I've worked in healthcare over 40 years and am still shocked by the number of people (mostly women) who blindly follow anything their doctor says without asking questions or doing research. If you feel like your doctor is not listening to your complaints, doesn't take you seriously, refuses to explain things to your satisfaction, doesn't adequately answer your questions... GET ANOTHER DOCTOR. Yes, doctors have some expertise and training, but they don't know everything, they make a lot of mistakes and nobody knows your body better than you.
This particularly goes for diabetes. After I was diagnosed I dove into research. I came to disagree with a lot of the treatment. Avoiding carbs was the key to reversing it, along with tapering off the meds. Do your own research and do it quick. I hear reversal is most successful if done asap after diagnosis. I have had normal numbers and no men's for almost three years no we. It's a great alternative to living with insulin and Metformin. My doctor said it's like I was never diagnosed. I'm also 60 pounds lighter. If I'd listened to my doctor I'd probably be going for dialysis by now. BTW, when I crave a food I eat it, then go back to being disciplined. I never feel deprived.
Very few humans are good listeners and actually hear what you're saying. We cant expect doctors to be any different. The older we get, the deafer they get, imo.
@@smallbeginning2 That's a very good point. Are you in a country with socialized medicine? Thank goodness here in America we still have the choice of who we want to care for us. Apparently Jessica's health insurance plan even allows her to go out of state (from Missouri to Minnesota) to get the very best care.
My son had a PCP, her medical care was sorely inadequate. Went to a second PCP for my son. Same situation. He's now going to the 3rd PCP in 14 months. 3rd PCP has done the bare minimum. I think it's time to look for a new one. THIS IS REDICULOUS!!!!!!!!!!
43,000 people have seen this video now, Jessica. They have sisters, daughters, parents. You have undoubtedly raised awareness in hundreds of thousands of people now, and saved more than a few lives.
Are you for real? You’re knee-deep in this right now and you’re already thinking of others and educating/communicating. This made me cry at how amazing you are. So proud x f#cking warrior
I’ve had a pre op for a pending hysterectomy. I’ve not been given a date yet, but most be fairly soon . My cervix has closed so they can’t continue to test for abnormal cells. I was thinking of asking to have my ovaries left because apparently there is still a small release of hormones released that helps prevent osteoporosis. Since listening to what you said about ovarian cancer not tested for , perhaps I am better to have all taken out just in case .
I’m so glad you’re sharing this. My husband’s cancer has devastated our lives. His cancer was already stage 4 and we didn’t even know he was sick. UA-cam has become my therapy in dealing with it. Praying for you!
Big hug, I know how hard it is. My dad's cancer seemed stage 3 when it was initially discovered; one week later it turned out to be stage 4. He basically had zero symptoms, just some vague throat pain. Best of luck to you and your husband!
I was diagnosed with ovarian cancer almost exactly one year ago. I’m doing well now. (I finished chemo in March, and my hair is almost 2” long now!) My presentation was the opposite of yours: ovaries looked normal on ultrasound, but CA-125 was over 700 (normally less than 35). As both a doctor and a patient, I can tell you the information you present in this video is absolutely correct. Before I went to med school, I envisioned myself as a primary care doctor who would give all my patients a full body CT every year! But medical training taught me the risks of this approach outweigh the benefits. The benefits are small. The risks are not only a lot of radiation exposure, but false positive results. CT scans frequently turn up things that look abnormal, but aren’t. A third reason some screening tests turn out to be more harmful than helpful is statistics. No test is 100% accurate; they all have false positive and false negative rates. If we screen large numbers of people for rare diseases, the false positive rate can be higher than the true positive rate. It was the combination of symptoms, ultrasound, and CA-125 (and doctors who knew how to work with this information) that allowed you and me to be diagnosed. Thank you for sharing all your information with the world. I wish you the best.
Thank you, that is very helpful. Always have believed medicine is still more of an art than a science in a way. When money is involved, that’s when I get upset.
This is the frustration with ovarian cancer. For most people, there are no signs until is is quite progressed, and I hope you continue to be cancer free. Not all scans are hazardous, e.g., MRIs and ultrasound are very, very safe. And yes, a whole body scan is going to turn up all sorts of weird and wonderful things. But, it is also up to you and the doctor to determine what to follow up on. There is a (probably) benign tumor in one of the bones of my shoulder, found during an MRI to look for a tear. My doctor and I discussed this and decided to leave it. I have a (probably) benign tumor in one kidney, found during a scan for something else. And yes, often times diagnosis requires multiple tests, as not all are positive. It still doesn't mean some tests shouldn't be done. I think a simple abdominal ultrasound, as part of a well women exam, should be done. Will it find cysts and lumps and bumps... yes. Will it detect every ovarian cancer... no. But it is a basic and safe test that might help identify SOME cancers earlier. Breast self-examination does not detect cancer at a better rate than mammograms, yet we are encouraged to do it and any lumps we find are then investigated appropriately. This is really no different.
I was diagnosed with ovarian cancer last year also. Sorry to hear you too. My CA125 is normal but I have a lot of pelvic cramping, back pain, fatigue which I have had more or less for a long time but it seems to be getting worse, not sure. I am really wary of the CT I have scheduled in Oct. because of the radiation and false positive and negative results you talk about. I don't know if I should go through with it or not. I don't have a good doctor overseeing my care. I've had terrible trouble, even with the surgeon. But what else can I do. I have no idea what to do and I don't trust my doctors and I am super scared. what other test is there? nothing? they said MRI is not good nor ultrasounds. I've already had a full hysterectomy but was not staged because the surgeon didn't find the cancer that was inside one ovary and on the surface until after the surgery when it was biopsied. It was a borderline serous tumor but the pathogoist said she thought it had spread. I just am at a total loss and so confused. No wonder this cancer is so lethal. There are no accurate tests for it. I just don't know what to do. Do you think I should go through with the CT? I'm trying to find another good gyn oncologist I can trust but it is really hard. I'm in a rural area, closest major city is Seattle three hours from where I live. Sorry to dump on you. I've never felt so unsure about my medical status or the doctors I have had. Good luck to you. Any input is appreciated. Take care.
As far as scans go I am a advocate for low dose CT scanning for cancer. I had lung cancer that was found incidentally when I got a CT scan for a entirely different issue. I had no symptoms and most lung cancers are stage 3-4 by the time symptoms become evident. My cancer was stage 1 and I am so glad I had that CT scan and found my lung cancer.
I had uterine cancer. My only sign was some light spotting after going through menopause. They did a ultrasound and determined by the thickness of my uterine lining (which is a different parameter in different countries-good I live in the United States) that I needed a biopsy. They found the cancer and scheduled me for a full hysterectomy and removal of two lymph nodes. They said my ovarian was very enlarged on one side but no cancer there - only in my uterus. I’m cancer free 3 years now. I am praying for your full recovery! 💕
I just had a biopsy the other day I have the same symptoms as you a thick uterus and they found a polyp in my cervix and it’s all tested for biopsy. I’m going for an MRI next week. I am almost 62 years old and a bit concerned
@@brendaogara2543what was your diagnosis.. I am going thru the same, 59yo 10yrs into menopause.. just had a day of spotting.. TVUS showed 5mm thickness and an 8mm polyp, scheduled for biopsy with D&C..
I work in medical research. A colleague and I were discussing ovarian cancer and how it is often diagnosed at late stages. I asked why he thought that was th case and he said "It's because there is so much room down there. You can have a grapefruit sized tumor and not be aware of it. Not true in the brain, or in a bone or in the neck." And I thought, "That is probably true. Also, no bones down there in the immediate vicinity. So a met to a bone (which will alert you with pain) is way less likely than with lung cancer or breast cancer or a cancer in the joints. all argues for more early molecular biomarkers for testing.
Lung cancer is often very difficult to diagnose in the early stages. My sister had back pain, and when she was diagnosed, after one doctor sent her for physical therapy, her lung cancer was stage 4. It had already metastasized.
I have ovarian cysts. I can feel them quite well when they get to what I deem to be a tennis ball size, thank you. I know that they are not, but they are very uncomfortable. GYN's tend to be dismissive and tell me that it shouldn't hurt, but it doesn't make it any better or get me help. I wonder if your attitude as a researcher is just a by-product of the more dismissive attitude throughout the entire field that delays a chance to diagnose sooner. 🤨
@@joew7041 you're making a wrong conclusion. Research does not mean patient contact. In fact zero patient contact. I do research. Meaning, the topic I happen to research is sometimes ovarian cancer. But in my case is more typically genetics, and molecular biology and imaging and a bunch of other things. Relax. My "attitude" is not dismissiveness nor hostility. But yours is.
@@joew7041 you hit the nail on the head...R&D by far is so dismissive. I wonder if they take a oath to be so silent! I have a family member who is a notable research oncology scientist and when asked questions she absolutely refuses to answer.
I had cysts that were ignored because they told me that cysts are normal for women. After several trips to the emergency room, nothing was done. I had a positive pregnancy test, by the next day it was negative and ultrasound confirmed no baby. Instead they saw liquid and when I got CT scan, they saw a tumor that burst which was most estimated to be the size of a softball. After surgery and several biopsies, no sign. Now I got another positive pregnancy test with HCG rising. I'm terrified. It's so scary. The symptoms can be so similar. So scary. It makes me feel better I'm not alone. I am waiting for ultrasound to confirm what's going on currently.. I had a rare form which grows slowly. Mine was stage 1c. Thank you for the inspiration and strength. ❤
@@mrsbucky1 I was fortunate enough to actually get pregnant after being told it wouldn't happen again. I do have another cyst on the other side, though. They said it is a dermoid and are monitoring it currently.
Since my family has a high cancer history I have the transvaginal sonogram pap smear mammogram and breast sonogram every year. Last year I had some symptoms bothering me so I had another transvaginal Braca and saline Sonogram plus uterine biopsies done. Another CA 125 all negative. Uterine lining quite thin. Trying to stay on top of this. We need better testing to find this cancer in early stages. I'm hearing FRa is a faily new test for diagnosing Ovarian cancer. A dear lady I knew from church had been diagnosed with Ovarian cancer in her 50's. She was treated and went into remission. It did reoccur twice. Her last battle with it she had genetic testing and was put on Lynparza. Definitely shrunk the tumors and she lived into her late 80's. Thanks so much for bringing awareness 🙏 ❤️
I agree that they should do a yearly scan on everyone. The money they would save in the long run! I had endometrial cancer in 2019. It’s a process that I don’t ever want to go through again. I had chemo and internal radiation. I’m cancer free! I wish you all the best in your journey and it is a journey. 🙏
Thank you so much for this video. I was diagnosed stg 3 ovarian in January. I just finished treatment and I’m recovering well. My symptoms and situation is very similar to urs. With my weight it was hard to tell a lot of things, but also I’ve always thought my frequent urinating, heavy periods, UTI’s, bloating, fatigue, and back pain, I assumed was normal and cause of my weight. What made me go to the dr was feeling full fast and that pain in my abdomen! I had that pain for 4 months! I was misdiagnosed with GERD and H.Pylori. Turned out, it was a 20cm mass on my ovary. Cancer at 30 as well as a radical oophorectomy and debulking. Now that treatment is over and I’m in menopause, I realize how shitty I felt all these years. I feel so much better. Every day has its challenges, but I’ll take it over what I was feeling before. These videos help me so much. Im in this journey with you. Im proud of you and have you in my prayers. Thank you for sharing♥️
A PAP smear checks only for cervical exam. Most people don’t realize that an ovary is about the size of a large almond. During the bimanual exam the doc is trying to feel the ovary between skin, abdominal fat and intestine. By the time someone can feel the mass it is quite large!
That is something I didn't realize until this past year or so, that the PAP smear doesn't check for ovarian cancer. A CT also doesn't detect everything, as in if something is in the bladder or maybe colon, etc, it might not be seen.
But they check the ovaries when you have a pap smear. My gyneacologist (in Europe) does the pap smear first and then she does the transvaginal ultrasound and ultrasound of the lower belly on the outside. I always ask her if she sees any tumours in there. A transvaginal ultrasound examines the uterus, fallopian tubes, ovaries, cervix, and vagina. I'm in my early 30s and I go once per year to have it done as part of prevention.
I have to push to get ultrasounds. My mom died from ovarian cancer, so I’m going to continue to push for those ultrasounds. I’ll even pay out of pocket if I have to (but it seems like good preventative common sense to get one yearly!).
Just found you! I was diagnosed May of 2023. I had a complete hysterectomy at 29 and I had just turned 66. I was extremely fatigued, had pain in my lower left quadrant and I had extreme constipation. I knew things were not right when I started having severe pelvic pain almost like period cramps, and some times 1:04 felt like early stages of labor. I had one ovary on the left that was left to prevent me from going into early menopause. I had a large mass that had grown in that ovary and then my bowels had wrapped around that. This was found from an external ultrasound…immediately upon exam. From there I had to advocate for myself to get the process started to conclusively diagnose what eventually was called stage ovarian cancer. The process since has still been bumpy. I had a severe reaction to the product Avastin that given to me after my fourth chemotherapy session. I have been hospitalized twice with a stroke and TIA’s as a result of elevated blood pressure. I realize I’m probably very atypical as I’m also immune deficient but I also know that much of the treatment plan is trial and error. It’s not always a “one size fits all”. Best of luck to you and you will be in my prayers. Stay strong!
My mother’s symptom was a heaviness in her uterus area. Now, she had had a endometrial ablation done when she was about 52 (she was diagnosed with ovarian cancer at 65) and that had pretty much sealed the opening of her cervix so when her tumour started leaking fluids it got trapped in the uterus and made it really heavy. She’s an ICU nurse and had guessed what her diagnoses would be before the surgery but it was after the surgery we found out it wasn’t a cyst but that it was cancer. She was at a stage 2 or 3 with a bit of spread to the stomach lining. She’s 81 now and fine except for some nerve damage in her feet from the chemo.
@@smallfootprint2961 an ablation is the burning out of the uterus lining, it fused one of my tubes and ovaries to the outside of my uterus and had to have a complete hysterectomy, surgeon said it was a mess.
@@smallfootprint2961 She needed it because she had been bleeding heavily for weeks. Apparently one can get bleeding lesions in the uterine lining because of hormones during peri menopause. The procedure is a cauterisation of the uterine lining and that created scar tissue. In her case those scars sealed her cervix. Not a nice procedure but something had to stop the bleeding.
Because your grandmother passed from it, you should certainly be offered the tests we do have available. DNA tests for any markers should also be offered and insurance should cover it. All the best with this journey!
Same with Gilda Radnor (er). Family history. I read her book... Think her.mother also had it. She was going to doctors with complaints and told they could not find anything wrong. This was over 40 years ago. My friend's mom was ex's with stage IV two Christmas's ago. Amazingly they have helped her! O.P. , no radiation, but some pills.
I hesitated to watch this video. I was just at my annual last Wednesday and my doctor is sending me for an ultrasound next Friday. She says it's probably nothing, but she feels like there's some swelling in my belly and just wants to "rule out" anything serious. I've been going back and forth between "I've always had a big belly" and "OMG I don't want to die!" I'm so impressed with how you are being so strong and you're able to make these videos without crying your eyes out. I'm so scared.
I am so glad you are getting it checked out ❤️ I know firsthand how scary it is, but try to just deal with the information you currently have and not dwell on the “what ifs” too much. Easier said than done. Just know you are doing everything you can possibly do at this time. ❤️ Prayers that it’s nothing serious.
You shouldn’t die if you get it diagnosed early! My tumor was the size of a babies head (the gynecologist totally missed it) I had to argue with him to get a pelvic ultrasound and the appropriate bloodwork but I was willing to stay until I got what I needed! It sounds like your doctor cares so please trust this doctor.
It's okay to not be "strong", cry if you got to. I know I do, a lot. And I guess crying doesn't mean we're not strong, it's just a way of dealing with anxiety.
Sharon, it shouldn't be a matter if the doctor cares or not, they should be doing their job! Particularly doing their job for both women and men, NOT totally dismissing women per usual!!
My sis was 42 when she received her ovarian cancer diagnosis. It also took her team a while before they staged her at 3 or 4. Thank you for helping educate people. I pray for you and Brian.
I think full body scans in the long run would save insurance companies more money. The cost of cancer treatments, CT scans, radiation, etc cost more than one preventative body scan. Praying for you Jessica and thank you for the information.
You absolutely are correct on what you were saying about yearly screenings and the frustrating aspects of insurance companies getting in the way of you and your health care. MRI is one of the other gold standards that can be used to detect pretty much any kind of cancer. Unfortunately with our for-profit health care / health insurance system that we have in the US, we don't give a crap about spending money to do preventive stuff. Our system robs people not only of their money but also of their health long-term. That is something that needs to change.
...and once something is found, the health insurance companies love to say no. My experience with my father, who had private high cost health insurance as a self employed person. First time(s) he tried to make a claim.
@@pantameowmeow.s.1149 I even hate the word claim. As if it's something that you have to provide it evidence to some nameless greedy business that you're sick or injured...
Thank you for talking about this.I’m so angry that prostate C can be detected by a simple blood test, and ovarian C is usually discovered very late. My mom lost weight and was “gassy” , her dr never picked up on the earlier signs. Then her lungs filled with cancerous fluid ,and they found it when she couldn’t breathe, stage 4. She never had an actual tumor. I wish you the strength to fight with everything you got.
I’ve been having abdominal pains, I have cysts, my lungs filled with fluid too, can you tell me more about what happened with your mom and her symptoms?
@@Zoethefurrytabby she had her gallbladder removed a few decades earlier so the gassiness was not too unusual ; it was just more prominent with bloating. She had a hernia (unrelated to cancer) and that dr could see granularity on her omentum. There was never any visible tumor on the ovary. The most prominent early symptom was weight loss . Then one lung filled with fluid (pleurisy). The ER drained it but the dr mistakenly didn’t order the correct tests on the fluid to check for cancer. So they waited months till there was fluid again, the correct tests were done and she was diagnosed stage 4. I didn’t understand how serious the lung fluid was at the time.. Make sure the pleurisy fluid is tested correctly. All the best 💕
@@Zoethefurrytabby it’s also important if there is a history of this cancer in your family(BRCA gene). Maybe look for research in your area . My sister signed up for one in Montréal: “I took part in a research thing today Early detection. Of ovarian and endometrial cancer. Blood tests. Saliva sample. Endovag ultrasound then a regular pap. And then a nasty uterine pap. Quite painful for about 10 seconds. But worth it. Since they began this study they inadvertently found ovarian cancer and endometrial cancer in several of their subjects. All at stage 1 or stage 2. All curable.” So I think there may be tests out there; but we have socialized medicine in canada so they mostly only do the minimum.
@@ericksonsails thanks for the correction. Doesn’t change the fact that men could get diagnosed at stage 1 if they make minimal screening efforts. My mom was diagnosed at stage 4 when the cancer was already in her lungs and brain. That was my point. WHY are women diagnosed so late .
Praying 🙏 for a full healing Jessica. My mum passed away from ovarian cancer 5 years ago and was stage 4 when she was diagnosed. My mum was 79 when she was diagnosed although it was devastating, at least she had lived a long life surrounded by her children and 5 grandchildren. I miss her terribly and praise the Lord Jesus, he carried her through the journey with no pain and a quick and peaceful passing. It is a terrible illness and not a cancer that you can screen for like some others. Let’s hope this can change in the future with research and fundraising to push this further. Amen 🙏
Thankyou Jessica, it’s very kind of you to think of others and give all the advice you can on this .. I wish you all the love in the world and may you have strength for all the treatment you have to have.. The love of a good man like Brian will see you through lovely lady....bless you x
When I watched the Gilda Radner story they recommended the following test and I have it done annually: CA-125 Blood Test A CA-125 blood test can be used as part of an overall approach to monitoring ovarian and other cancers. It’s used as a screening tool for people at very high risk for ovarian cancer.
I think as women we are taught to ignore abdominal pain and discomfort as normal. I have had awful periods, bloating, and pain with sex and peeing all the time, for the last year and kinda just wrote it off as bad periods after my c-section. Had my pap and it came back as abnormal for the second time so they decided to do a colposcopy again and found out I have a rare form of uterine cancer that has spread to my cervix which is the only reason it was even caught on my pap. I never knew they werent checking for uterine cancer (or ovarian) until my diagnosis. Thank you for sharing and I hope your journey to remission goes well! You sharing your cancer journey makes me feel less alone as I am starting my own.
I think it is ridiculous that we are so behind in women's health issues. Not many people are aware that heart attack symptoms are different for women than they are for men. We are not treated the same. You are lucky to have really good care.
It's true. It took me 7 years and 4 doctors to get diagnosed with the same heart disease my mother had. Three doctors in a row just kept diagnosing me as "old" when I actually need a pacemaker. The 4th doctor actually listened to and heard me. What if I hadn't given up?
I agree. She's is lucky to have good care. I was diagnosed early last year but my care is so bad I'm afraid I'm not going to make it anyway. Good doctors are hard to find and I'm glad she's with a good team at Mayo.
@@wordswordswords8203 I'm so sorry you're going through this. If you are in the US and have insurance you can call and see if they have a nurse advocate to coordinate your appointments and treatments.❤️ I hope your care gets better and you can kick cancer's boot! Sending you lots of love and support.💐
After reading the comments, it makes one wonder if there was a cancer that affected only men, would there be better testing options/research? When I had heart trouble at 30 they told me it was an anxiety attack, ended up a few years later after moving out of state, that I needed heart ablasion, maybe a pacemaker, but the ablasion worked. So, listen to your gut & find a doc that will listen & have your best interest!
September is Ovarian Cancer Awareness Month and I wanted to share some information with all of you. Please share this video to help spread awareness about the signs, symptoms and (lack of) screening for ovarian cancer. 💙 Here is a playlist of all the videos related to my cancer diagnosis: bit.ly/KrockCancerJourney
hello my mom is a two time cancer survivor out of respect i will not give much info just that she had Neroendocrine cancer and was cancer free. then mom had a normal scan and found out she had stage 2 Ovarian Cancer had treatment and is cancer free. her cancer came after my dad died and i have been traumitized by his death
Thanks so much for pointing out that being young does not mean you cannot develop cancer. My sister-in-law who is 37 was diagnosed with stage 3 colon cancer in July of this year. She had no related symptoms at the time so it has been a complete shock.
Thanks Jessica. Did the Terry Fox Run today. Was glad I was healthy enough this year. Almost five year journey with endometrial cancer and all the complications from, sepsis, surgeries, radiation, C. difficile, etc. I just deal with it like going to the dentist. Don’t like it but got to do it. Take care. Judy BC Canada.
Thanks so much for your video!! I haven’t watched all your other videos yet but I was curious what size the cysts were. I have bilateral ovarian cysts and have all the symptoms you’ve described but cancer was never in the discussion with the gynecologist. He was only worried about if one of the cysts bursted so I’ve been trying to shrink them with vegan diet and exercise before the next ultrasound.
Thank you for making this video. My aunty was diagnosis with ovarian cancer thirty years ago. She just turned 85 and is alive and well. 🙏❤️ Your hat is gorgeous by the way 🌻
Thank you for sharing this! I am a retired R.N. who worked ICU/CCU. Obviously I had many years of education. This cancer was never on our list except that it can occur. We never knew this information even 30 years ago. Thank you again and again!!!! We need to know this firmly!!!!!!!
Thank you this info. You may have saved many lives. My sister-in-law had ovarian cancer and her only sign was difficulty breathing. She went to two drs that dismissed her dyspnea as seasonal allergies. The 3rd dr found she had a COLLAPSED LUNG due to metastasis of the ovarian cancer. It was too late for her to get treatment. Keep sharing your journey. We are with you in spirit🕊.
My Mom died of uterine cancer in 2005 at the age of 72yrs. I was diagnosed with uterine cancer in 2009 at the age of 53yrs old. My only symptom was break through bleeding. I thought it was only menopause🤷♀️ Stay strong! Praying for your beating cancer!🙏🙏❤️ Love your channel!
I'm praying for you during this journey with Ovarian Cancer. I don't have Ovarian Cancer but I had a stroke in January and it to has changed my life. One day you are living your life and then the next day your life is completely changed. Please know that you talking about Ovarian Cancer will help that one woman that sees your video. I would love to start a channel to talk about stroke and possibly helping that one person. Praying for you.
If ultrasound is the only way to detect ovarian cancer I find it should be part of the yearly check-up. I have my next check-up in November and I will ask my doctor all about it. All the best for you and thank you for sharing these information with us! So valuable.
Hi Jessica great information you shared. I would like to add for women of a certain age if you have post menopausal bleeding GET IT CHECKED OUT. It could save your life, it sure saved mine. Thinking and praying for you!
Love your knit hat and top! I’ve had an overactive bladder for decades and developed abdominal bloating a few years ago. …but because of weight gain. If I experience anything more out of the ordinary I will have it checked out. I’ve been a vegetarian for 30+ years and because vegan (WFPB) in 2021 when I needed my gallbladder removed - very important video! Thank you!😅
My ob/gyn stressed over and over to me the same thing, so when I started spotting I called her right away. She scheduled a d&c within a week. Fortunately they found nothing, and I haven't had trouble since, but she still asks me every pap appt.
My mother's ovarian cancer was found accidentally when they went in to remove a large fibroid tumor from her uterus. That was 60 years ago. No chemo. No radiation. Just remove everything possible and send you home to wait and see if they got it all. She was 36. She lived to be 90. It took many years to get past the fear and depression, the worry every time she had a twinge or felt a little sick. But eventually she beat the fear and took back control of her life.
I am thinking to not go through chemo either, after debulking surgery. Was your mom on HRT? I am also 36 and it’s comforting to know she lived that long despite surgical menopause…
My mom had her annual check up at her GYN around Thanksgiving and was clear. After December she began having symptoms (swollen belly) and was diagnosed with Ovarian cancer. My brother couldn't believe that there was no test for this cancer. That was back in 1998. I developed a condition that was out of the ordinary for me and ran to the doctor. I was diagnosed with early stage Endometrial cancer in 2017. There's no test for that either, until you actually get it. The only course treatment was total hysterectomy. Thankfully I didn't need chemo or radiation. Because it was caught early I was spared. This is usually not so for Ovarian cancer. Grateful Jessica that treatment for Ovarian cancer has significantly improved over the past two decades when my mother fought against it. Stay encouraged.
We caught my endometrial cancer because I had fibroids causing problems. I ended up getting a total hysterectomy in which they also found tumor (non cancer) in my ovaries. I was 58 at the time, and not going every year for my check up. Shame on me and I feel very lucky. It could have gotten very bad had I put off the visit that found it.
My diagnosis of endometrial cancer resulted in hysterectomy in 2019, at 70. No further treatment needed as well, didn’t know it then but stats show IF it recurs it usually is within 3 yrs, my 3yrs anniversary (surgery) is October 1, unfortunately I’m having symptoms again, and have ultrasound scheduled for This Wednesday. Glad Jessica has a supportive husband, many folks go thru cancer with little emotional support.
I found your channel about a month after your diagnosis and have followed you since. I have been an ovarian cancer survivor since 2014. Thank you for sharing your story. Your sharing your story. Some of the symptoms you had are the same ones I had. I also had yearly checkups And was scheduled to have my yearly exam when I decided I didn't need to wait until then to get checked. When my doctor did my surgery my tumor weighed 7 1/2 pounds. I had my last check up less than 13 months before. I am praying for you. After watching your story, I have decided to look for more ways to encourage other women to really listen to their bodies and get checked further if after seeing their Drs. for their yearly check up if things just don't feel right. You and your story have been an I an inspiration to be more active. Thank you for sharing your story.
@@AyoonMir low fat and plant based. I didn’t cut out all meat just less meat. Minimized sugar intake and cut out most processed foods. Prayers for your mom.
@@sonjaweekley6124 have u been on some medication after recovering from cancer.Actually my mom was recovered 4 months ago and now her cancer got back on a same place but doctors had not given any medicine to her just check after every 3 months thats why I'm asking have u been on some sort of medication?
Ovarian Cancer is the sneakiest SOBs for women...no tests and even with a family history, symptoms sometimes come down to the specific woman. I appreciate this video, Jessica...for the information you share for someone who really doesn't know
Hi. I'm so PROUD of you for being able TO SAY you have Ovarian Cancer. When we first heard about your issues before the Mayo Clinic, you couldn't even say you might have it. Now, you said it several times, n even talking about your experience n testing more comfortably. " BE AN ADVOCATE FOR YOUR OWN HEALTH " . BEST Advice Given. Big Hugs n Warm Thoughts !!!!! Peace to you and yours
You are so right about being your own advocate. There seems to be a list of platitudes doctors keep so patients remain calm. The 90% of tumors are benign is one. They never let you know about that other 10%. My sister was having stomach issues. She went to doctors but then let her insurance dictate so much of her care rather than doing what she knew she needed. So many things got delayed like an ultrasound and a biopsy due to insurance. When she finally got a diagnosis, it was liver cancer. Fight for yourself, demand the treatment you need, don’t let doctors or insurance companies push you aside because you don’t fit the profile. You deserve the best - so demand it.
I had lots of tests, and all was negative for cancer ,till they ordered a few more, not so common blood tests , and bingo, found positive markers for cancer, not the CA125! I have a 5 cm ovarian mass and I’m in my 60’s! Now, I’m on “ a list “ to have surgery but not in a rush it seems like, it’s frustrating and scary !
Thank you so much for this video! I have a family history of ovarian cancer. It started with my paternal grandmother. She got ovarian cancer in her late 70's. Then years later, one of my paternal aunts (my father's sister) got ovarian cancer in her early 60's. She died from this disease. Many years later, her sister was diagnosed with ovarian cancer just prior to her death. Cancers run in my family. All my grandparents, aunts and uncles, and my mother died of a cancer. After my mother got diagnosed and passed away from breast cancer, I and my sisters decided to get genetic testing for BRCA and BRIP genes. My tests were negative, but 2 of my younger sisters had the BRIP genes. One sister was positive for the CHEK 2 gene. The BRIP gene is a genetic marker for a possible (small) risk of a familial ovarian cancer. Both my sister then had total hysterectomies. Seven months after one of my sister's surgery, she was diagnosed with breast cancer. She just celebrated her 5th anniversary of being cleared. My mother had 3 types of cancer before she passed away. My one sister with the breast cancer also had thyroid cancer several years before that. My one surviving maternal aunt has had 3 cancers. If you have any increased risk of cancer from family history, consider genetic counseling. If you have ovarian cancer in your family history, consider getting genetic counseling and tested for both the BRCA and BRIP genes.
Tremendously helpful video. My grandmother had ovarian cancer (way back in 1969). In a strange way, it feels as if little has changed. She was diagnosed after it had spread. Her symptoms were subtle (at first). Baffling. With all the advances in medicine/science, you'd think we'd be further along when it comes to the diagnosis of this disease. Hm...could be that you've started a revolution. I must say, you do look like a warrior in that lovely crocheted hat!
Women aren't taken seriously in doctor offices. We are dismissed, told it's because we're over weight, told it's all in our head, or told were getting old and this is what old feels like so get used to it. They want to give women antidepressants and to do nothing about the actual symptoms!!!!!!
@@barbarabanley6798 I tell you, too many men think they are smart and have created all kinds of abuse for women, But I tell you again, they will stop laughing when they stand before GOD, who is testing hearts. Maybe a female doctor would be better. I have one here in Greece. Didn't choose her, but was sent to her. Thyroid.
I had my period show up… despite the fact thatI had gone through menopause a few years ago. I had been irregular all my life,so didn’t think it was important. I checked on line and that was what prompted me to see my doctor. So, ladies, beware and be aware.
Retired Nurse here, it’s a tough call as to when to go to the doctor. Jessica was wise to set a time limit if the pain didn’t go away. If you go to the dr for pain, they will ask you how long it’s been going on, if you say yesterday they will probably not be concerned. If you have persistent pain then see your dr. Waiting 2 weeks is not going to make a difference. In an emergency of course go to the ER. Pain for a weeks needs attention. Go Jessica 😅👍
Hi Jessica. So sorry for you, I know it's not easy. You look like you are having a pretty good day, which is great. I feel like science is letting women down. I have family and friends who have had ovarian cancer. I always say people can go to the moon but can't find cures for diseases! Just baffles me. Praying for you and Brian. Each time you make a video you will have to show us your shirts. :)
I agree. Very baffling how behind the times the science is on this. It's a fairly "rare" disease so I think that might be part of it. 22, 000 women a year diagnosed in U.S. Not as much as many other cancers. No excuse if that's it. I got diagnosed with it last year and am finding my care just awful. My doctors are downright hostile to me. Sucks.
Wow. I'm so glad you made this video. I was diagnosed with ovarian cancer last August. It was an incidental finding when they took out my uterus. I was lucky it seemed to be early stage but the surgeon didn't stage me because he didn't know the ovary had cancer in it until after the surgery. So here I am every three months getting a pelvic exam and a CA125 which is normal. I am very interested to hear that your CA125 was normal even though you had pretty significant ovarian cancer. That's really good for me and other women to understand, that the test doesn't mean all that much. One thing I do want to mention is that if you do have a close relative with this disease like immediate or close extended family, that's a pretty big head's up to get the CA125 and transvaginal ultrasound. However, as you so aptly put, even doing that isn't necessarily going to pick it up and/or extend your life if you have the disease which I don't completely understand but is very depressing. I have a question for you. Actually, I'll start another comment with my question since I am so deep into this long comment. Sorry. : ) I am finding it very very troubling that there is no good test for this disease, even with me now in the surveillance mode, I am not particularly assured by the pelvic and CA125 exams I am getting. Another thing is some things put women at higher risk in addition to the genetic/familial component. One is not having kids, two, being Jewish heritage, I think starting menstruation early is another one... there are more, you can find them online. I'm not sure if ovarian cancer has an estrogen driving component as in if you are overweight you are more likely to have it? I am quite overweight. So, yea, that something to look into. Ok, I'm going to start a new comment with my question. I want to say to you, sorry, I'm new here, don't know your name, but to this brave woman making this video. Honey you are smart, brave, have a wonderful attitude and a generous spirit. Yes, great idea about bringing in guests and just getting as much info about there as possible. I think you said you are at Mayo Clinic. That's a good place to be getting help. Thats important, too. You are an inspiration, and you stay strong.
Is it common for an overian cancer patient if the CA 125 test exceeds its limit like 100. Does it mean that the cancer have got back or it could be just normal please let me know waiting for ur reply
I love how empowered you are, Jessica. Mindset can make a huge difference in a person's experience. I look forward to hearing more about how you're doing. :)
This is great to reach your subscribers and educate as many people as possible. The best advice, as you said, is to know your body and don’t delay if something feels wrong. I had no symptoms other than urinary frequency and constipation. No pain at all but I knew this was unusual for me. I was also fortunate to have a doctor who listened to me and ordered the trans vaginal ultrasound and from that my diagnosis was suspected and then confirmed through surgery done by a gynecological oncologist, also important. My doctor initially said stage 4 but was later upgraded to 3C. After chemo I have had no evidence of cancer for almost 7 years. Keep doing what you are doing and I wish you all the best.
I refuse to believe that yearly ultrasounds would not reduce ovarian cancer deaths! I am an 11-year ovarian cancer survivor. My cancer was caught at stage 1 because I had fibroids and had had an ultrasound a year before I had some symptoms and had a second ultrasound. The fibroids were ok, but the radiologist could see a cyst inside one of my ovaries. He saved my life by looking beyond the fibroids and seeing a small cyst. Cysts are common and often resolve themselves, so my primary physician said to wait a few months and get another ultrasound to make sure my cyst was gone. I forgot all about it, but my dr made the followup ultrasound appointment for me and I then found out that the cyst did not go away, but was larger. That started me on the road to a surgery to remove that ovary, and the cyst did turn out to be cancer, so I had 18 weeks of chemo and then a full hysterectomy (I was past menopause so it was an easy decision.) My oncologist said my symptoms that led to my ultrasound (where the cyst was found) were not from the cancer, and I would not have felt symptoms from the cancer for another year or more, after it spread. So periodic ultrasounds saved my life, as did a talented radiologist, and my primary physician who made sure I had the followup ultrasound. Anyway, I bet if men got ovarian cancer, there would be a test for it already. In the meantime, ultrasounds for other reasons are the best chance women have to have their ovarian cancer found early. You have my best wishes for successful chemo and a cure, not just a remission. I hope we are both here 11 years from now to celebrate life!
I'm so glad you told us there's no test for this, I mistakenly thought pap smear also tested for ovarian cancer. You're a champ for using your voice to help others when you're facing this. Praying for your swift and full recovery.
Similarly to ovarian cancer, rectal cancer goes unnoticed. I had no symptoms at all! It just sickens me though because if doctors had done a digital exam like they used to, mine could have been caught way sooner!
you poor little thing. no symptoms at all?? good lord! yes what u are saying is true. im so sorry yours wasnt caught sooner. wishing u hugs and healing. ps...i think Farrah Fawcett died of rectal cancer over a decade ago? i figured that because a celebrity died from it, there would be more research dollars assigned to it but i dont recall seeing any public awareness works surrounding rectal cancer?
As someone who suffers with lots of health issues, especially auto immune issues, I feel your frustration with medical technology and how it seems to be so lacking. Even more frustrating is that insurance companies decide when and how often you can be checked for certain issues. Sending hugs and prayers! I saw so many specialists and had so many scans for my symptoms only to find out that it was low vitamin D. Once I started researching how important vitamin D levels are in preventing autoimmune issues and hard to detect cancers (like ovarian cancer), I was angry. Why is such a simple test that can affect our health not part of regulate bloodwork panels? You are your best advocate ❤️ trust that you know your body better than anyone.
You are 100% correct! The insurance companies use humans to make money off of but we are not their prostitutes! Your vitamin D blood level is one of the most critical markers because if it is low you will get many diseases including diabetes, heart disease and cancer but insurance and doctors put every roadblock in the way of getting your vitamin D measured because they make money off of all the diseases that the low vitamin D causes. Ideally the vitamin D blood level is between 60-80 ng/ml
With your grandma having ovarian CA-if you made the drs aware in your family history the dr should have been exploring more with you. I am so sorry you are dealing w/ the ca. You posting this information is so important and my hat is tipped to you.
Whoa.. here in Germany my gynecologist did check me once a year with the ultrasound, it's normal.. so sorry to hear your story, thank you for sharing and I hope you will get well very soon.
Thank you for posting this. Its a taboo subject that needs to be discussed esp as specialists saying it's rare for under 30's to fet it. I've got a friend who lost her daughter to ovarian cancer 18 months ago who was in her mid 20's when diagnosed and died when she was 30. Her parents have set up a legacy in her name on Facebook.
The old Line... to be honest I followed your channel because you were losing weight from "plant-based " dietary eating. Something I believe in. Your channel morphed into a very serious issue,, Wow. I can't believe how honest you have become. I wish you the both the best
It's good to get something checked when you think there is something not right. You might not even be able to be seen for a month, possibly even longer for your first consultation, so time is of the essence. Jessica, I wish you all the best!
if you have family history of cancer, get regular check ups. I had ovarian and breast cancer in my family. A regular check up showed some cysts. I insisted they be looked at rather than a watch and see. I went to my gynecologist I had in Virginia and she had a scan done. Since I had "chocolate" cysts meaning there was matter or blood in the cysts. We agreed that they should be removed and tested. A week after having both ovaries removed, I was back for a full hysterectomy. It was stage 2 there were no symptoms. But because of strong family history my doctor and insurance agreed to removal of both ovaries. It could easily have been fatal but I always had in mind my family history. So if it's hard to notice symptoms early on, at least be proactive in testing regularly especially if someone in your family has a history of cancer. I wish you the best and thank you for letting others know about your experience
Thank you for the great video. The only reason that I found out at stage 2B, was because I started having a leaking bladder that I was having checked out. I always had my yearly screenings and regular Pap smears. They finally did a transvaginal ultrasound that detected two ovarian tumors. One was the size of a grapefruit and the other was the size of a plum. I wish they automatically did a ÇA 125 as part of the yearly exam for women. I understand why the do not, but I think it might have helped in my situation.
This is a good example of why simple palpation is a poor test. You may have had masses that were missed by your doctor. I have 1/2 x 1/2" fibroadenoma in one breast. It has not been detected by any doctor doing a routine breast examination in over 30 years. If I show the doctor where it is, they can readily feel it, but have never found it on their own.
Hi hope your doing well. I know this is from 2yrs ago but I had a transvaginal ultrasound and came back with mass on my ovary. It doesn't say cancer just listed as a cystic stucture I'm wondering if that's how yours came back.
I had bladder cancer and it’s the same situation as ovarian cancer. Took 2 years to finally be diagnosed. No test to determine diagnosis. Scoping and biopsy to diagnose. Mostly caught in later stages in women. I saw 3 urologist until I finally got a CORRECT diagnosis. Incorrectly diagnosed as “OVERACTIVE BLADDER” for years. At this point it had invaded the muscle wall. Frequent urinating was my main symptom, no blood. May I suggest homemade bone broth and fasting to get you thru chemo. I was a huge help for me. Chemo wasn’t too bad until my last treatment. Last treatment was horrible. Don’t give up! You’ll get thru it. Good luck in your journey.
Please know Jessica that Ovarian cancer is never yours or anyone else fault. Thank you for passing on this information, it is good for all women to know this information. Your explanation was very thorough.
They would find all sorts of things that aren't necessarily "normal" but that don't actually need treatment, so there would be huge numbers of unnecessary procedures and fear.
Beautiful miss Jessica who is an inspiration - thank you for sharing your journey. You have peef bear on one shoulder, and a guardian angel on the other.
You did a great job raising awareness Jessica, so thank you for that. It just sucks. You were doing all the right things and I'm so sorry you're going through this. Those of us that aren't can consider ourselves extremely lucky because as you said, there is no way to know about ovarian cancer until you have sypmptons. It's frightening we don't have a test for it. Take good care of yourself!❤
Thank you for sharing so honestly. The truth of what you say is courageous and really helpful to us.I'm not religious. But I pray for your recovery because the world needs people like you and Brian.
Thank you for sharing your story. I’ve been doing research and trying to read stories because I’m scared. My mass was found on my left ovary after experiencing intense abdominal pain and the mass causing my ovary to turn on itself. I was rushed to the hospital and they were scared to touch me because a OBGYN specialist and oncology were not available. I was discharged and am scheduled for my surgery next week. Everything you talked about has been my experience and I’m scared. I just pray all is well and no cancer is found. Thank you for sharing your story.
After my sister was diagnosed at late stage 4, she told me that one thing she had noticed was post menopausal ovulation pinching sensation that she had in her fertile years. She didn't go right in because she was in between insurance with the change over to medicare. Sadly, years earlier she tried to get her OBgyn to do the CA125 test (as did I) and was told it wasn't reliable enough to use... Wish she would have insisted. Anyway, I too started having the reemergence of pain during ovulation so I went in and they did internal and external ultrasound. It is frightening to think that most testing is not conclusive. Thank you for sharing and please add the above symptom to the list people may want to watch for. Giant hugs to you and Brian and Peef and your fur babies.
There is something called mittleschmirtz.. spelling? .. you can have painful ovulation without cancer.. just FYI.. the pinching feeling may be totally independent of th CA.. but maybe it was!
@@CassieDavis613 exactly. I've been told its not a screening tool but more like a tool to check for the rise or fall during the course of the disease... and if suspected .. with all that being said... it could be used more often ? That and more TVUSs. And better exams... I went to a gun with post menopausal bleeding and he didn't lay a hand on me.. just said its normal , I asked for tvus due to symptoms and past issues... he agreed..there were 3 concerning findings.
I totally agree that there should be some type of screening for not only ovarian cancer but I have endometrial cancer and there is no screening for that either…..my only risk factors I had was age and possibly frequency of urinating…😮….I’m 68 and never had an abnormal Pap test either……. We should all band together and demand some type of screening!! 👍🤗🫣🙏🙏 By the way my cancer was stage 4…..I’m doing well now with total abdominal hysterectomy and 6 rounds of chemo….no evidence of disease….I’m feeling like my old self and looking forward to life again…🤗👍❤️.
Do you mind if I ask how they knew or diagnosed the endometrial CA? I just had a TVUS and showed endometrial fibroid, polyp and ovarian something or other type cyst 2cm.. its been about 4 -5months and thinking about scheduling with a doc to discuss.. the nurse who told me results didn't think anything was too concerning..
@@lulamamie8524 thank you I’m feeling great back to golfing/walking…..I walked through my chemotherapy and surgery….I really think it helped me recover faster….❤️🤗👍
Thank you so much for sharing all this info. I have my pap scheduled for tomorrow. I have been so scared of cancer because my 6 year old son (5 at the time) was diagnosed with ALL Leukemia and he really needs me. Jessica I am sorry that you are going through this but you have a lot of ppl cheering you on! You can beat this and kick cancers ass!!! 👊🏽👊🏽👊🏽 we are right along side you!! 💪🏽💪🏽💪🏽💪🏽💪🏽
Yes, everyone must advocate for their own health! I had to push for my own diagnosis of another type of cancer that is also hard to catch early. Some of the symptoms you mentioned for ovarian cancer also apply to uterine fibroids, especially the heavy periods. Hang in there Jessica! You are such an inspiration to everyone that must face such a terrible diagnosis as cancer!
You sound so upbeat and energetic telling such a devastating stroy Im currently being tested for cancer and have a tumor growing near my bladder and bowel etc ...and cant imagine how you feel living with such prognosis. ...and so many problems. I experience severe pain daily and wonder how "you" cope . Ive watches close relatives and pets suffer with aggressive cancers ...but they were never as energetic as you . Wishing you so much love, light and peace Bless you and have a very merry christmas Hope you are okay now Xxx
I went through Endometrial cancer a few years ago. A very frightening experience and I pray for you, Brian, your family, and your team of doctors each day. Sending you and Brian much love!
Unfortunately the papsmear does not screen for endometrial cancer either. As a cytotech those endometrial cells may be shed during a papsmear but usually not.
@@DaniElle-di4ho the gyno takes a biopsy of your uterus wall... thats how mine was caught because I was bleeding a lot. ( I also did an ultra sound first to see how think the uterus wall where )
@@DaniElle-di4ho I went in because I was having an extremely heavier than normal period. They did a pap and ended up sending it to Mayo clinic because their testing came back suspicious, but they couldn't tell more than that. Mayo is the one that found it.
I'm here because I'm freaking out. Found a large mass on my ovary. Estrogen levels are out of control but my CA-125 is normal. I don't know what's going on, but thank you for providing this video. The information itself is comforting regardless of what is going on with me. I wish the best for you.
Where I live (Puerto Rico) the ultrasound is made in every check up. Is so strange in the states do not do it. This information that you’re sharing is eye opening and helpful.
Thank you for creating this video! Symptoms were considered ‘normal’ for me. One DR at my emergency room visit looked further and alerted me, I had removal procedure last week, had I not had a team of healthcare professionals walking me through the tests I wouldn’t have known.
You are doing such an important service in educating people! Also, you look super cute in your flower hat - own it girl!!!! Praying for you both every day! ❤
You are an amazing strong women. What a great thing you are doing with this informative video! Ovarian cancer is so elusive. My mother, my fathers sister and mother all were diagnosed with ovarian cancer. May the peace of Christ surround you and strengthen you on this journey. Peace.
We’re all pulling for you J! Thanks for taking the time to make this video for others. ❤ (PS my parents did a raw food diet when my dad had prostrate cancer, it made a huge difference in his overall health and his oncologist couldn’t believe how fast his blood counts improved.)
I am with you with the body scan. Ovarian cancer is so hard to diagnose due to where the ovaries lie. My family has no history and yet my Mother and I both had pre-cancer/Stage one. Best of luck to you and Thank You for sharing.
Hi Jessica. Thank you for sharing your story. Considering your family history you may want to get genetic screening for the BRCA gene. If you do test positive then your insurance company will pay for more frequent screening such as MRI and diagnostic ultrasounds or even "risk reduction surgery" (mastectomy in your case). Just a thought. If you are positive for the BRCA gene it means you directly inherited it from your parent who inherited from your grandmother. The gene does not skip a generation. Just some thoughts to consider. God bless you and Brian.
To elaborate a bit more on ovarian cancer screening (from a junior doctor who is by no means a specialist in oncology or statistics, but who probably has a bit more of an understanding of how screening tests get developed and funded than the average person) There are a few things that get taken into account when assessing a test as being “good” as a screening test in asymptomatic people. This might offer a bit of an explanation as to why CA 125 is not recommended as a screening tool in asymptomatic women. Specificity - This refers to how well the test identifies patients who do not have the disease. It compares the number of patients without ovarian cancer who have a negative test (true negatives) and the patients without ovarian cancer who have a positive test (false positives) (i.e. there is another condition that makes CA 125 high). In this case there are a few - including endometriosis, liver disease, menstruation, pelvic inflammatory disease, pregnancy, fibroids - that could cause CA 125 to be high. A good screening test would need to be very specific to ovarian cancer. Sensitivity - This refers to how well the test identifies patients with ovarian cancer. It compares the number of ovarian cancer cases that are detected by the test (true positives), compared to the number of ovarian cancers that are missed (false negatives). A highly sensitive test means most cases of ovarian cancer are picked up by the test. Sensitivity is really important with regards to being able to detect early stages of disease. The CA 125 is not great at this, picking up only 50% of early ovarian cancers, vs 85% of late stage cancers. Because of this, if someone had no symptoms or vague symptoms, but had a normal CA 125 at an annual check up, it could be falsely reassuring. This is the main reason it is not recommended as a screening test in asymptomatic people. Someone like Jessica, whose CA 125 was not elevated, would have been in the 50% that were missed. CA 125 does have its uses. It is used in patients with confirmed ovarian cancer that do have a raised CA 125, then it can be used to assess response to treatment (i.e. if it is going down, then the patient is likely responding to treatment) or to assess for recurrence (i.e. the patient has had successful treatment, and it is monitored over time). In the case of ovarian cancer, when early diagnosis could be absolutely game changing - a screening test is absolutely needed! It’s just CA 125 isn’t perfect for the above reasons, and we don’t have a good solution yet. There are other things we can do, and which the Krocks are doing an incredible job at - raising awareness, educating about symptoms, encouraging patients to advocate for themselves and share their own stories, and encouraging clinicians to consider ovarian cancer earlier on (before it is literally staring us in the face.) I have certainly learnt a lot from Jessica sharing her experiences.
@@blinkybill2803 You are absolutely correct about why the CA125 is not used routinely. However, there are many tests that have poor predictability but are in current use. Take the Prostate Specific Antigen (PSA) test. It doesn't predict prostate cancer even 50% of the time. But now, it is becoming the preferred test over the digital rectal exam (DRE), and is being offered to even younger men, to set a baseline. All covered by insurance companies. There are definitely health disparities between man and women and I think this is one of those areas. For example, having a doctor stick their fingers in your vagina and vaguely press around your abdomen trying to "feel" for a mass is as unpleasant as a DRE and only predicative if the mass is large. This farce of an ovarian cancer screen could/should be replace by a simple ultrasound. In addition, there are many ovarian cancer genetic markers than just CA125, including BRCA1 and 2. Why aren't all individuals who are assigned female at birth (AFAB) screened for these markers in their late teens? If you don't have them... great, normal screening for you from now on. If you have one or more, then you get enhanced screening, as appropriate. There is a lot that could be done for earlier diagnosis with the tests and tools we have now, especially for non-breast cancers that affect AFAB individuals.
Oh 100%, lots of things are done routinely that are not very helpful. In Australia neither the college of gynaecologists nor the college of GPs recommends bimanual pelvic exams in asymptomatic women anymore (as part of well women checks), and I think the ACOG in the US doesn’t either. But how many women have this quite invasive examination done yearly, which could also be falsely reassuring. People with prostates in AUS usually get pretty in-depth counselling about how PSA is an imperfect test before deciding whether to do screening. There isn’t really a good reason why that couldn’t also be done for people with ovaries, with things like genetic screening or tumour markers. The barrier with radiological screening would be getting funding (either from the government with socialised medicine, or insurance), in order to pay the ultrasonographers and radiologists required to do and report the test. Also need to consider the health disparity due to poverty, and that in a country like the US then even if these tests are encouraged for screening, there is a whole subset of the population who would remain disadvantaged. Basically there’s a lot that needs to be improved
1-2x a year!!! also, if the BRCA is present, instead of mammograms Breast MRIs should be standard. My insurance co will not pay. I have BRCA! $3600 on them vs the enormous cost to treat cancer???? The oddity of the yearly check up is that they don’t do the finger up bum and ultrasound, which should also be standard for ALL women!!! Not all women know they have BRCA gene. So meant reasons not to get tested. People who are from poorer communities, may not ever know they had cancer in their body. In many communities, ANYONE can be a Corner (this is not right the mortician that is elected - I can’t think of the word - akin to mortician). Also, want to know why women are diagnosed so late? We women are always written off! My female PCP, who? Actually I’m not with her anymore because I hate her that’s not nice but I HATE her, she knows I have the Bracha to mutation and I requested when I first moved to her at her clinic to get yearly referrals for my mammogram MRI , and my annual check up every six months with the ultrasound and the CA, 125 bloodwork as per previous protocol. This woman said to me when I was 35 years old, “at your age, you do not need to worry about this you are too young. Anyhow, most people who have the BRCA mutation most likely will not get cancer.” We aren’t friends. Lol Also, she wrote me off when I was hunched over in so much pain due to Acute Pancreatitis (not alcohol related nor was I aware of what was going on) and was dismissive of me. I ended up in the hospital in and out and it had been over three years now. I have now learned that the BRCA mutation is related to Pancreatic cancer also. Not kidding. Point? Don’t let the doctors bully you and remind them they work for us!!!!!
Thank you for sharing your journey. It's so awful that cancer patients need to share that they weren't "negligent " in their Healthcare. My son had a huge softball size tumor next to his liver. Good news that it wasn't cancerous- but first symptom was that he couldn't hold down food... because tumor was so big. It's crazy. Also, love the hat!
My grandma fought ovarian cancer for 9 years. She was diagnosed at a late stage. Her first sign/symptom was bloating. She could hardly put her pants on and she wasn’t a large woman. It’s been 12 years since she passed. We’ve come to learn that our family has the BRCA gene mutation. We believe my grandma had the gene mutation as she had breast and ovarian cancer. Both my mom and aunt have the gene mutation and my aunt has had breast cancer twice. I (thank God) do not have the gene mutation. With your grandma having ovarian cancer and you having it at such a young age I would highly recommend you get tested for the gene mutation asap. It may help you and other family members be aware of the increased risk of cancer if you’re positive. Thank you for this video and thank you for spreading awareness about ovarian cancer!
Sending you some love I was diagnosed 3 months ago had first chemo didn't realize it would knock me for six I keep saying we've got to try and fight this horrible thing but it's hard I'm 53 I had hysterectomy in 2013 they were supposed to remove my fallopian tubes but they didn't now I have ovarian cancer stage 4 stay strong and keep goingxxxx
So glad I found your video, My mom had ovarian cancer pretty young and here I am having every symptom associated with Ovarian cancer. Fingers crossed it’s just a cyst. Appointment Monday for Sonogram.. you’re so inspirational and thank you for sharing your journey with us ❤
Women have been under treated forever! It is/was common to chalk everything up to “hysteria “ Great info , thanks for being so brave to share Keep fighting!!💕
This is really important information, especially since they aren't even doing PAP smears every year anymore, so the woman's exam, including checking the ovaries manually, may not be done even every year. I think they should do the ultrasound every year, at least. My doctor did one at my last appointment and it only took a few minutes. I didn't need a separate appointment like I have in the past with other medical groups.
I've worked in healthcare over 40 years and am still shocked by the number of people (mostly women) who blindly follow anything their doctor says without asking questions or doing research. If you feel like your doctor is not listening to your complaints, doesn't take you seriously, refuses to explain things to your satisfaction, doesn't adequately answer your questions... GET ANOTHER DOCTOR. Yes, doctors have some expertise and training, but they don't know everything, they make a lot of mistakes and nobody knows your body better than you.
This particularly goes for diabetes. After I was diagnosed I dove into research. I came to disagree with a lot of the treatment. Avoiding carbs was the key to reversing it, along with tapering off the meds. Do your own research and do it quick. I hear reversal is most successful if done asap after diagnosis. I have had normal numbers and no men's for almost three years no we. It's a great alternative to living with insulin and Metformin. My doctor said it's like I was never diagnosed. I'm also 60 pounds lighter. If I'd listened to my doctor I'd probably be going for dialysis by now. BTW, when I crave a food I eat it, then go back to being disciplined. I never feel deprived.
Very few humans are good listeners and actually hear what you're saying. We cant expect doctors to be any different. The older we get, the deafer they get, imo.
It's not that easy in all countries. In my country you have to phone the city and get permission to change doctors, you have to justify it etc etc.
@@smallbeginning2 That's a very good point. Are you in a country with socialized medicine? Thank goodness here in America we still have the choice of who we want to care for us. Apparently Jessica's health insurance plan even allows her to go out of state (from Missouri to Minnesota) to get the very best care.
My son had a PCP, her medical care was sorely inadequate. Went to a second PCP for my son. Same situation. He's now going to the 3rd PCP in 14 months. 3rd PCP has done the bare minimum. I think it's time to look for a new one. THIS IS REDICULOUS!!!!!!!!!!
43,000 people have seen this video now, Jessica. They have sisters, daughters, parents. You have undoubtedly raised awareness in hundreds of thousands of people now, and saved more than a few lives.
Are you for real? You’re knee-deep in this right now and you’re already thinking of others and educating/communicating. This made me cry at how amazing you are. So proud x f#cking warrior
I know, I couldn't even tell my husband next to me about her video and what she is sharing without tears. I admire her so much.
I want to cry 😢😢😢 I had two periods in a month this month and I have a cyst
Ty lady for doing this ❤❤❤
I’ve had a pre op for a pending hysterectomy. I’ve not been given a date yet, but most be fairly soon .
My cervix has closed so they can’t continue to test for abnormal cells.
I was thinking of asking to have my ovaries left because apparently there is still a small release of hormones released that helps prevent osteoporosis.
Since listening to what you said about ovarian cancer not tested for , perhaps I am better to have all taken out just in case .
I’m so glad you’re sharing this. My husband’s cancer has devastated our lives. His cancer was already stage 4 and we didn’t even know he was sick. UA-cam has become my therapy in dealing with it. Praying for you!
Praying for you as well ❤️❤️❤️
Sending prayers for your husband and family
I’m so very sorry ❤️
Big hug, I know how hard it is. My dad's cancer seemed stage 3 when it was initially discovered; one week later it turned out to be stage 4. He basically had zero symptoms, just some vague throat pain. Best of luck to you and your husband!
I appreciate you sharing your story. You will be in my prayers. ❤️🌹
I was diagnosed with ovarian cancer almost exactly one year ago. I’m doing well now. (I finished chemo in March, and my hair is almost 2” long now!) My presentation was the opposite of yours: ovaries looked normal on ultrasound, but CA-125 was over 700 (normally less than 35). As both a doctor and a patient, I can tell you the information you present in this video is absolutely correct.
Before I went to med school, I envisioned myself as a primary care doctor who would give all my patients a full body CT every year! But medical training taught me the risks of this approach outweigh the benefits. The benefits are small. The risks are not only a lot of radiation exposure, but false positive results. CT scans frequently turn up things that look abnormal, but aren’t.
A third reason some screening tests turn out to be more harmful than helpful is statistics. No test is 100% accurate; they all have false positive and false negative rates. If we screen large numbers of people for rare diseases, the false positive rate can be higher than the true positive rate.
It was the combination of symptoms, ultrasound, and CA-125 (and doctors who knew how to work with this information) that allowed you and me to be diagnosed.
Thank you for sharing all your information with the world. I wish you the best.
Thank you, that is very helpful. Always have believed medicine is still more of an art than a science in a way. When money is involved, that’s when I get upset.
lookup Dr Bergs recent vid interview on cancer = very informative. and also see Shawn bakker md vids on cancer.
This is the frustration with ovarian cancer. For most people, there are no signs until is is quite progressed, and I hope you continue to be cancer free. Not all scans are hazardous, e.g., MRIs and ultrasound are very, very safe. And yes, a whole body scan is going to turn up all sorts of weird and wonderful things. But, it is also up to you and the doctor to determine what to follow up on. There is a (probably) benign tumor in one of the bones of my shoulder, found during an MRI to look for a tear. My doctor and I discussed this and decided to leave it. I have a (probably) benign tumor in one kidney, found during a scan for something else. And yes, often times diagnosis requires multiple tests, as not all are positive. It still doesn't mean some tests shouldn't be done. I think a simple abdominal ultrasound, as part of a well women exam, should be done. Will it find cysts and lumps and bumps... yes. Will it detect every ovarian cancer... no. But it is a basic and safe test that might help identify SOME cancers earlier. Breast self-examination does not detect cancer at a better rate than mammograms, yet we are encouraged to do it and any lumps we find are then investigated appropriately. This is really no different.
I was diagnosed with ovarian cancer last year also. Sorry to hear you too. My CA125 is normal but I have a lot of pelvic cramping, back pain, fatigue which I have had more or less for a long time but it seems to be getting worse, not sure. I am really wary of the CT I have scheduled in Oct. because of the radiation and false positive and negative results you talk about. I don't know if I should go through with it or not. I don't have a good doctor overseeing my care. I've had terrible trouble, even with the surgeon. But what else can I do. I have no idea what to do and I don't trust my doctors and I am super scared. what other test is there? nothing? they said MRI is not good nor ultrasounds. I've already had a full hysterectomy but was not staged because the surgeon didn't find the cancer that was inside one ovary and on the surface until after the surgery when it was biopsied. It was a borderline serous tumor but the pathogoist said she thought it had spread. I just am at a total loss and so confused. No wonder this cancer is so lethal. There are no accurate tests for it. I just don't know what to do. Do you think I should go through with the CT? I'm trying to find another good gyn oncologist I can trust but it is really hard. I'm in a rural area, closest major city is Seattle three hours from where I live. Sorry to dump on you. I've never felt so unsure about my medical status or the doctors I have had. Good luck to you. Any input is appreciated. Take care.
As far as scans go I am a advocate for low dose CT scanning for cancer. I had lung cancer that was found incidentally when I got a CT scan for a entirely different issue. I had no symptoms and most lung cancers are stage 3-4 by the time symptoms become evident. My cancer was stage 1 and I am so glad I had that CT scan and found my lung cancer.
You could just be saving someone's life. ❤
Yes! ABSOLUTELY!❤❤❤❤
I had uterine cancer. My only sign was some light spotting after going through menopause. They did a ultrasound and determined by the thickness of my uterine lining (which is a different parameter in different countries-good I live in the United States) that I needed a biopsy. They found the cancer and scheduled me for a full hysterectomy and removal of two lymph nodes. They said my ovarian was very enlarged on one side but no cancer there - only in my uterus. I’m cancer free 3 years now. I am praying for your full recovery! 💕
Had almost the same situation
I just had a biopsy the other day I have the same symptoms as you a thick uterus and they found a polyp in my cervix and it’s all tested for biopsy. I’m going for an MRI next week. I am almost 62 years old and a bit concerned
@@brendaogara2543what was your diagnosis.. I am going thru the same, 59yo 10yrs into menopause.. just had a day of spotting.. TVUS showed 5mm thickness and an 8mm polyp, scheduled for biopsy with D&C..
What was your thickness?
@@brendaogara2543what was your diagnosis and how thick? Going thru the samething now and mine is 5mm with an 8mm polyp.. scheduled for D&C
I work in medical research. A colleague and I were discussing ovarian cancer and how it is often diagnosed at late stages. I asked why he thought that was th case and he said "It's because there is so much room down there. You can have a grapefruit sized tumor and not be aware of it. Not true in the brain, or in a bone or in the neck." And I thought, "That is probably true. Also, no bones down there in the immediate vicinity. So a met to a bone (which will alert you with pain) is way less likely than with lung cancer or breast cancer or a cancer in the joints. all argues for more early molecular biomarkers for testing.
That makes sense. Thank you for sharing.
Lung cancer is often very difficult to diagnose in the early stages. My sister had back pain, and when she was diagnosed, after one doctor sent her for physical therapy, her lung cancer was stage 4. It had already metastasized.
I have ovarian cysts. I can feel them quite well when they get to what I deem to be a tennis ball size, thank you. I know that they are not, but they are very uncomfortable. GYN's tend to be dismissive and tell me that it shouldn't hurt, but it doesn't make it any better or get me help. I wonder if your attitude as a researcher is just a by-product of the more dismissive attitude throughout the entire field that delays a chance to diagnose sooner. 🤨
@@joew7041 you're making a wrong conclusion. Research does not mean patient contact. In fact zero patient contact. I do research. Meaning, the topic I happen to research is sometimes ovarian cancer. But in my case is more typically genetics, and molecular biology and imaging and a bunch of other things. Relax. My "attitude" is not dismissiveness nor hostility. But yours is.
@@joew7041 you hit the nail on the head...R&D by far is so dismissive. I wonder if they take a oath to be so silent! I have a family member who is a notable research oncology scientist and when asked questions she absolutely refuses to answer.
“WHEN IN DOUBT GET CHECKED OUT” love that!!
I had cysts that were ignored because they told me that cysts are normal for women. After several trips to the emergency room, nothing was done. I had a positive pregnancy test, by the next day it was negative and ultrasound confirmed no baby.
Instead they saw liquid and when I got CT scan, they saw a tumor that burst which was most estimated to be the size of a softball. After surgery and several biopsies, no sign. Now I got another positive pregnancy test with HCG rising. I'm terrified. It's so scary. The symptoms can be so similar.
So scary. It makes me feel better I'm not alone. I am waiting for ultrasound to confirm what's going on currently..
I had a rare form which grows slowly. Mine was stage 1c.
Thank you for the inspiration and strength. ❤
I just read your post on UA-cam. I hope you were actually pregnant and not another cyst!
@@mrsbucky1 I was fortunate enough to actually get pregnant after being told it wouldn't happen again. I do have another cyst on the other side, though. They said it is a dermoid and are monitoring it currently.
Since my family has a high cancer history I have the transvaginal sonogram pap smear mammogram and breast sonogram every year. Last year I had some symptoms bothering me so I had another transvaginal Braca and saline Sonogram plus uterine biopsies done. Another CA 125 all negative. Uterine lining quite thin. Trying to stay on top of this. We need better testing to find this cancer in early stages. I'm hearing FRa is a faily new test for diagnosing Ovarian cancer. A dear lady I knew from church had been diagnosed with Ovarian cancer in her 50's. She was treated and went into remission. It did reoccur twice. Her last battle with it she had genetic testing and was put on Lynparza. Definitely shrunk the tumors and she lived into her late 80's. Thanks so much for bringing awareness 🙏 ❤️
I agree that they should do a yearly scan on everyone. The money they would save in the long run! I had endometrial cancer in 2019. It’s a process that I don’t ever want to go through again. I had chemo and internal radiation. I’m cancer free! I wish you all the best in your journey and it is a journey. 🙏
Thank you so much for this video. I was diagnosed stg 3 ovarian in January. I just finished treatment and I’m recovering well. My symptoms and situation is very similar to urs. With my weight it was hard to tell a lot of things, but also I’ve always thought my frequent urinating, heavy periods, UTI’s, bloating, fatigue, and back pain, I assumed was normal and cause of my weight. What made me go to the dr was feeling full fast and that pain in my abdomen! I had that pain for 4 months! I was misdiagnosed with GERD and H.Pylori. Turned out, it was a 20cm mass on my ovary. Cancer at 30 as well as a radical oophorectomy and debulking. Now that treatment is over and I’m in menopause, I realize how shitty I felt all these years. I feel so much better. Every day has its challenges, but I’ll take it over what I was feeling before. These videos help me so much. Im in this journey with you. Im proud of you and have you in my prayers. Thank you for sharing♥️
Apko betana mein problem hota ho ga back pain mein.??? Plz reply
A PAP smear checks only for cervical exam. Most people don’t realize that an ovary is about the size of a large almond. During the bimanual exam the doc is trying to feel the ovary between skin, abdominal fat and intestine. By the time someone can feel the mass it is quite large!
That is something I didn't realize until this past year or so, that the PAP smear doesn't check for ovarian cancer. A CT also doesn't detect everything, as in if something is in the bladder or maybe colon, etc, it might not be seen.
But they check the ovaries when you have a pap smear. My gyneacologist (in Europe) does the pap smear first and then she does the transvaginal ultrasound and ultrasound of the lower belly on the outside. I always ask her if she sees any tumours in there. A transvaginal ultrasound examines the uterus, fallopian tubes, ovaries, cervix, and vagina. I'm in my early 30s and I go once per year to have it done as part of prevention.
@@riase That's amazing. In America they don't do any ultrasounds at your annual appointment.
I have to push to get ultrasounds. My mom died from ovarian cancer, so I’m going to continue to push for those ultrasounds. I’ll even pay out of pocket if I have to (but it seems like good preventative common sense to get one yearly!).
Just found you! I was diagnosed May of 2023. I had a complete hysterectomy at 29 and I had just turned 66. I was extremely fatigued, had pain in my lower left quadrant and I had extreme constipation. I knew things were not right when I started having severe pelvic pain almost like period cramps, and some times 1:04 felt like early stages of labor. I had one ovary on the left that was left to prevent me from going into early menopause. I had a large mass that had grown in that ovary and then my bowels had wrapped around that. This was found from an external ultrasound…immediately upon exam. From there I had to advocate for myself to get the process started to conclusively diagnose what eventually was called stage ovarian cancer. The process since has still been bumpy. I had a severe reaction to the product Avastin that given to me after my fourth chemotherapy session. I have been hospitalized twice with a stroke and TIA’s as a result of elevated blood pressure. I realize I’m probably very atypical as I’m also immune deficient but I also know that much of the treatment plan is trial and error. It’s not always a “one size fits all”. Best of luck to you and you will be in my prayers. Stay strong!
My mother’s symptom was a heaviness in her uterus area. Now, she had had a endometrial ablation done when she was about 52 (she was diagnosed with ovarian cancer at 65) and that had pretty much sealed the opening of her cervix so when her tumour started leaking fluids it got trapped in the uterus and made it really heavy. She’s an ICU nurse and had guessed what her diagnoses would be before the surgery but it was after the surgery we found out it wasn’t a cyst but that it was cancer. She was at a stage 2 or 3 with a bit of spread to the stomach lining. She’s 81 now and fine except for some nerve damage in her feet from the chemo.
Why on earth would the cervex be sealed up? Sounds abusive. Help us understand this.
I had an endometrial ablation, it was a huge failure followed by a complete hysterectomy. But the doctor insisted I try that first, SMH
@@smallfootprint2961 an ablation is the burning out of the uterus lining, it fused one of my tubes and ovaries to the outside of my uterus and had to have a complete hysterectomy, surgeon said it was a mess.
@@smallfootprint2961 She needed it because she had been bleeding heavily for weeks. Apparently one can get bleeding lesions in the uterine lining because of hormones during peri menopause. The procedure is a cauterisation of the uterine lining and that created scar tissue. In her case those scars sealed her cervix. Not a nice procedure but something had to stop the bleeding.
@@minnesotagal507 I’m sorry that happened to you, that’s really bad!
Because your grandmother passed from it, you should certainly be offered the tests we do have available. DNA tests for any markers should also be offered and insurance should cover it. All the best with this journey!
Same with Gilda Radnor (er). Family history. I read her book... Think her.mother also had it. She was going to doctors with complaints and told they could not find anything wrong. This was over 40 years ago. My friend's mom was ex's with stage IV two Christmas's ago. Amazingly they have helped her! O.P. , no radiation, but some pills.
I hesitated to watch this video. I was just at my annual last Wednesday and my doctor is sending me for an ultrasound next Friday. She says it's probably nothing, but she feels like there's some swelling in my belly and just wants to "rule out" anything serious. I've been going back and forth between "I've always had a big belly" and "OMG I don't want to die!" I'm so impressed with how you are being so strong and you're able to make these videos without crying your eyes out. I'm so scared.
I am so glad you are getting it checked out ❤️ I know firsthand how scary it is, but try to just deal with the information you currently have and not dwell on the “what ifs” too much. Easier said than done. Just know you are doing everything you can possibly do at this time. ❤️ Prayers that it’s nothing serious.
fingers crossed
You shouldn’t die if you get it diagnosed early! My tumor was the size of a babies head (the gynecologist totally missed it) I had to argue with him to get a pelvic ultrasound and the appropriate bloodwork but I was willing to stay until I got what I needed! It sounds like your doctor cares so please trust this doctor.
It's okay to not be "strong", cry if you got to. I know I do, a lot. And I guess crying doesn't mean we're not strong, it's just a way of dealing with anxiety.
Sharon, it shouldn't be a matter if the doctor cares or not, they should be doing their job! Particularly doing their job for both women and men, NOT totally dismissing women per usual!!
My sis was 42 when she received her ovarian cancer diagnosis. It also took her team a while before they staged her at 3 or 4. Thank you for helping educate people. I pray for you and Brian.
I think full body scans in the long run would save insurance companies more money. The cost of cancer treatments, CT scans, radiation, etc cost more than one preventative body scan. Praying for you Jessica and thank you for the information.
You absolutely are correct on what you were saying about yearly screenings and the frustrating aspects of insurance companies getting in the way of you and your health care. MRI is one of the other gold standards that can be used to detect pretty much any kind of cancer. Unfortunately with our for-profit health care / health insurance system that we have in the US, we don't give a crap about spending money to do preventive stuff. Our system robs people not only of their money but also of their health long-term. That is something that needs to change.
...and once something is found, the health insurance companies love to say no. My experience with my father, who had private high cost health insurance as a self employed person. First time(s) he tried to make a claim.
@@pantameowmeow.s.1149 yup
@@pantameowmeow.s.1149 I even hate the word claim. As if it's something that you have to provide it evidence to some nameless greedy business that you're sick or injured...
Fellow recent ovarian cancer person right here. Such a sad plight we face and hard to understand why no screening and limited treatment. Prayers!!
Thank you for talking about this.I’m so angry that prostate C can be detected by a simple blood test, and ovarian C is usually discovered very late. My mom lost weight and was “gassy” , her dr never picked up on the earlier signs. Then her lungs filled with cancerous fluid ,and they found it when she couldn’t breathe, stage 4. She never had an actual tumor. I wish you the strength to fight with everything you got.
Prostate Cancer is not detected by a simple blood test. The PSA just gives the doctor some of the information for a diagnosis.
I’ve been having abdominal pains, I have cysts, my lungs filled with fluid too, can you tell me more about what happened with your mom and her symptoms?
@@Zoethefurrytabby she had her gallbladder removed a few decades earlier so the gassiness was not too unusual ; it was just more prominent with bloating. She had a hernia (unrelated to cancer) and that dr could see granularity on her omentum. There was never any visible tumor on the ovary. The most prominent early symptom was weight loss . Then one lung filled with fluid (pleurisy). The ER drained it but the dr mistakenly didn’t order the correct tests on the fluid to check for cancer. So they waited months till there was fluid again, the correct tests were done and she was diagnosed stage 4. I didn’t understand how serious the lung fluid was at the time.. Make sure the pleurisy fluid is tested correctly. All the best 💕
@@Zoethefurrytabby it’s also important if there is a history of this cancer in your family(BRCA gene).
Maybe look for research in your area . My sister signed up for one in Montréal:
“I took part in a research thing today
Early detection. Of ovarian and endometrial cancer.
Blood tests. Saliva sample. Endovag ultrasound then a regular pap. And then a nasty uterine pap. Quite painful for about 10 seconds.
But worth it. Since they began this study they inadvertently found ovarian cancer and endometrial cancer in several of their subjects. All at stage 1 or stage 2. All curable.”
So I think there may be tests out there; but we have socialized medicine in canada so they mostly only do the minimum.
@@ericksonsails thanks for the correction. Doesn’t change the fact that men could get diagnosed at stage 1 if they make minimal screening efforts. My mom was diagnosed at stage 4 when the cancer was already in her lungs and brain. That was my point. WHY are women diagnosed so late .
Praying 🙏 for a full healing Jessica. My mum passed away from ovarian cancer 5 years ago and was stage 4 when she was diagnosed. My mum was 79 when she was diagnosed although it was devastating, at least she had lived a long life surrounded by her children and 5 grandchildren. I miss her terribly and praise the Lord Jesus, he carried her through the journey with no pain and a quick and peaceful passing. It is a terrible illness and not a cancer that you can screen for like some others. Let’s hope this can change in the future with research and fundraising to push this further. Amen 🙏
Thankyou Jessica, it’s very kind of you to think of others and give all the advice you can on this ..
I wish you all the love in the world and may you have strength for all the treatment you have to have..
The love of a good man like Brian will see you through lovely lady....bless you x
When I watched the Gilda Radner story they recommended the following test and I have it done annually: CA-125 Blood Test
A CA-125 blood test can be used as part of an overall approach to monitoring ovarian and other cancers. It’s used as a screening tool for people at very high risk for ovarian cancer.
But Jessica's ca125 showed nothing.
@@sl4983 my ca-125 was completely normal when I was diagnosed...Marker tests are not accurate for everyone
I think as women we are taught to ignore abdominal pain and discomfort as normal. I have had awful periods, bloating, and pain with sex and peeing all the time, for the last year and kinda just wrote it off as bad periods after my c-section. Had my pap and it came back as abnormal for the second time so they decided to do a colposcopy again and found out I have a rare form of uterine cancer that has spread to my cervix which is the only reason it was even caught on my pap. I never knew they werent checking for uterine cancer (or ovarian) until my diagnosis. Thank you for sharing and I hope your journey to remission goes well! You sharing your cancer journey makes me feel less alone as I am starting my own.
I think it is ridiculous that we are so behind in women's health issues. Not many people are aware that heart attack symptoms are different for women than they are for men. We are not treated the same. You are lucky to have really good care.
It's true. It took me 7 years and 4 doctors to get diagnosed with the same heart disease my mother had. Three doctors in a row just kept diagnosing me as "old" when I actually need a pacemaker. The 4th doctor actually listened to and heard me. What if I hadn't given up?
I agree. She's is lucky to have good care. I was diagnosed early last year but my care is so bad I'm afraid I'm not going to make it anyway. Good doctors are hard to find and I'm glad she's with a good team at Mayo.
@@wordswordswords8203 stay strong! Fight! Ask for help. Easier said than done, I know. Just don’t give up! ❤
@@wordswordswords8203 I'm so sorry you're going through this. If you are in the US and have insurance you can call and see if they have a nurse advocate to coordinate your appointments and treatments.❤️ I hope your care gets better and you can kick cancer's boot! Sending you lots of love and support.💐
After reading the comments, it makes one wonder if there was a cancer that affected only men, would there be better testing options/research? When I had heart trouble at 30 they told me it was an anxiety attack, ended up a few years later after moving out of state, that I needed heart ablasion, maybe a pacemaker, but the ablasion worked. So, listen to your gut & find a doc that will listen & have your best interest!
September is Ovarian Cancer Awareness Month and I wanted to share some information with all of you. Please share this video to help spread awareness about the signs, symptoms and (lack of) screening for ovarian cancer. 💙 Here is a playlist of all the videos related to my cancer diagnosis: bit.ly/KrockCancerJourney
hello my mom is a two time cancer survivor out of respect i will not give much info just that she had Neroendocrine cancer and was cancer free. then mom had a normal scan and found out she had stage 2 Ovarian Cancer had treatment and is cancer free.
her cancer came after my dad died and i have been traumitized by his death
Prayers for you and your mom ❤️❤️❤️ I am glad to hear she is cancer free.
Thanks so much for pointing out that being young does not mean you cannot develop cancer. My sister-in-law who is 37 was diagnosed with stage 3 colon cancer in July of this year. She had no related symptoms at the time so it has been a complete shock.
Thanks Jessica. Did the Terry Fox Run today. Was glad I was healthy enough this year. Almost five year journey with endometrial cancer and all the complications from, sepsis, surgeries, radiation, C. difficile, etc. I just deal with it like going to the dentist. Don’t like it but got to do it. Take care. Judy BC Canada.
Thanks so much for your video!! I haven’t watched all your other videos yet but I was curious what size the cysts were. I have bilateral ovarian cysts and have all the symptoms you’ve described but cancer was never in the discussion with the gynecologist. He was only worried about if one of the cysts bursted so I’ve been trying to shrink them with vegan diet and exercise before the next ultrasound.
Thank you for making this video. My aunty was diagnosis with ovarian cancer thirty years ago. She just turned 85 and is alive and well. 🙏❤️
Your hat is gorgeous by the way 🌻
Thank you for sharing this! I am a retired R.N. who worked ICU/CCU. Obviously I had many years of education. This cancer was never on our list except that it can occur. We never knew this information even 30 years ago. Thank you again and again!!!! We need to know this firmly!!!!!!!
Thank you this info. You may have saved many lives.
My sister-in-law had ovarian cancer and her only sign was difficulty breathing.
She went to two drs that dismissed her dyspnea as seasonal allergies.
The 3rd dr found she had a COLLAPSED LUNG due to metastasis of the ovarian cancer. It was too late for her to get treatment.
Keep sharing your journey. We are with you in spirit🕊.
Things you can do:
Listen to your body, be an advocate for you, get annual screenings for other possible stuff.
My Mom died of uterine cancer in 2005 at the age of 72yrs. I was diagnosed with uterine cancer in 2009 at the age of 53yrs old. My only symptom was break through bleeding. I thought it was only menopause🤷♀️
Stay strong! Praying for your beating cancer!🙏🙏❤️
Love your channel!
I'm praying for you during this journey with Ovarian Cancer. I don't have Ovarian Cancer but I had a stroke in January and it to has changed my life. One day you are living your life and then the next day your life is completely changed. Please know that you talking about Ovarian Cancer will help that one woman that sees your video. I would love to start a channel to talk about stroke and possibly helping that one person. Praying for you.
Love and prayers from a cancer survivor ❤
Thank you ❤️
If ultrasound is the only way to detect ovarian cancer I find it should be part of the yearly check-up.
I have my next check-up in November and I will ask my doctor all about it.
All the best for you and thank you for sharing these information with us! So valuable.
Hi Jessica great information you shared. I would like to add for women of a certain age if you have post menopausal bleeding GET IT CHECKED OUT. It could save your life, it sure saved mine. Thinking and praying for you!
Love your knit hat and top! I’ve had an overactive bladder for decades and developed abdominal bloating a few years ago. …but because of weight gain. If I experience anything more out of the ordinary I will have it checked out. I’ve been a vegetarian for 30+ years and because vegan (WFPB) in 2021 when I needed my gallbladder removed - very important video! Thank you!😅
My ob/gyn stressed over and over to me the same thing, so when I started spotting I called her right away. She scheduled a d&c within a week. Fortunately they found nothing, and I haven't had trouble since, but she still asks me every pap appt.
My mother's ovarian cancer was found accidentally when they went in to remove a large fibroid tumor from her uterus. That was 60 years ago. No chemo. No radiation. Just remove everything possible and send you home to wait and see if they got it all. She was 36. She lived to be 90. It took many years to get past the fear and depression, the worry every time she had a twinge or felt a little sick. But eventually she beat the fear and took back control of her life.
I am thinking to not go through chemo either, after debulking surgery. Was your mom on HRT? I am also 36 and it’s comforting to know she lived that long despite surgical menopause…
My mom had her annual check up at her GYN around Thanksgiving and was clear. After December she began having symptoms (swollen belly) and was diagnosed with Ovarian cancer. My brother couldn't believe that there was no test for this cancer. That was back in 1998. I developed a condition that was out of the ordinary for me and ran to the doctor. I was diagnosed with early stage Endometrial cancer in 2017. There's no test for that either, until you actually get it. The only course treatment was total hysterectomy. Thankfully I didn't need chemo or radiation. Because it was caught early I was spared. This is usually not so for Ovarian cancer. Grateful Jessica that treatment for Ovarian cancer has significantly improved over the past two decades when my mother fought against it. Stay encouraged.
We caught my endometrial cancer because I had fibroids causing problems. I ended up getting a total hysterectomy in which they also found tumor (non cancer) in my ovaries.
I was 58 at the time, and not going every year for my check up. Shame on me and I feel very lucky. It could have gotten very bad had I put off the visit that found it.
My diagnosis of endometrial cancer resulted in hysterectomy in 2019, at 70. No further treatment needed as well, didn’t know it then but stats show IF it recurs it usually is within 3 yrs, my 3yrs anniversary (surgery) is October 1, unfortunately I’m having symptoms again, and have ultrasound scheduled for This Wednesday. Glad Jessica has a supportive husband, many folks go thru cancer with little emotional support.
I found your channel about a month after your diagnosis and have followed you since. I have been an ovarian cancer survivor since 2014. Thank you for sharing your story. Your sharing your story. Some of the symptoms you had are the same ones I had. I also had yearly checkups And was scheduled to have my yearly exam when I decided I didn't need to wait until then to get checked. When my doctor did my surgery my tumor weighed 7 1/2 pounds. I had my last check up less than 13 months before. I am praying for you. After watching your story, I have decided to look for more ways to encourage other women to really listen to their bodies and get checked further if after seeing their Drs. for their yearly check up if things just don't feel right. You and your story have been an I an inspiration to be more active. Thank you for sharing your story.
Can you plz tell me about ur diet plan which you followed at that time as my mom was diagnosed with overian cancer n am worried about her😢
@@AyoonMir low fat and plant based. I didn’t cut out all meat just less meat. Minimized sugar intake and cut out most processed foods. Prayers for your mom.
@@sonjaweekley6124 have u been on some medication after recovering from cancer.Actually my mom was recovered 4 months ago and now her cancer got back on a same place but doctors had not given any medicine to her just check after every 3 months thats why I'm asking have u been on some sort of medication?
@@AyoonMir just vitamins
@@sonjaweekley6124 thank you soo much
Ovarian Cancer is the sneakiest SOBs for women...no tests and even with a family history, symptoms sometimes come down to the specific woman. I appreciate this video, Jessica...for the information you share for someone who really doesn't know
Hi. I'm so PROUD of you for being able TO SAY you have Ovarian Cancer. When we first heard about your issues before the Mayo Clinic, you couldn't even say you might have it. Now, you said it several times, n even talking about your experience n testing more comfortably. " BE AN ADVOCATE FOR YOUR OWN HEALTH " . BEST Advice Given. Big Hugs n Warm Thoughts !!!!! Peace to you and yours
You are so right about being your own advocate. There seems to be a list of platitudes doctors keep so patients remain calm. The 90% of tumors are benign is one. They never let you know about that other 10%.
My sister was having stomach issues. She went to doctors but then let her insurance dictate so much of her care rather than doing what she knew she needed. So many things got delayed like an ultrasound and a biopsy due to insurance. When she finally got a diagnosis, it was liver cancer.
Fight for yourself, demand the treatment you need, don’t let doctors or insurance companies push you aside because you don’t fit the profile. You deserve the best - so demand it.
I had lots of tests, and all was negative for cancer ,till they ordered a few more, not so common blood tests , and bingo, found positive markers for cancer, not the CA125!
I have a 5 cm ovarian mass and I’m in my 60’s! Now, I’m on “ a list “ to have surgery but not in a rush it seems like, it’s frustrating and scary !
Update
Thank you so much for this video! I have a family history of ovarian cancer. It started with my paternal grandmother. She got ovarian cancer in her late 70's. Then years later, one of my paternal aunts (my father's sister) got ovarian cancer in her early 60's. She died from this disease. Many years later, her sister was diagnosed with ovarian cancer just prior to her death. Cancers run in my family. All my grandparents, aunts and uncles, and my mother died of a cancer.
After my mother got diagnosed and passed away from breast cancer, I and my sisters decided to get genetic testing for BRCA and BRIP genes. My tests were negative, but 2 of my younger sisters had the BRIP genes. One sister was positive for the CHEK 2 gene. The BRIP gene is a genetic marker for a possible (small) risk of a familial ovarian cancer. Both my sister then had total hysterectomies. Seven months after one of my sister's surgery, she was diagnosed with breast cancer. She just celebrated her 5th anniversary of being cleared.
My mother had 3 types of cancer before she passed away. My one sister with the breast cancer also had thyroid cancer several years before that. My one surviving maternal aunt has had 3 cancers. If you have any increased risk of cancer from family history, consider genetic counseling. If you have ovarian cancer in your family history, consider getting genetic counseling and tested for both the BRCA and BRIP genes.
Tremendously helpful video. My grandmother had ovarian cancer (way back in 1969). In a strange way, it feels as if little has changed. She was diagnosed after it had spread. Her symptoms were subtle (at first). Baffling. With all the advances in medicine/science, you'd think we'd be further along when it comes to the diagnosis of this disease. Hm...could be that you've started a revolution. I must say, you do look like a warrior in that lovely crocheted hat!
Like she said, and is true, symptoms can mean a LOT of things.
Women aren't taken seriously in doctor offices. We are dismissed, told it's because we're over weight, told it's all in our head, or told were getting old and this is what old feels like so get used to it. They want to give women antidepressants and to do nothing about the actual symptoms!!!!!!
@@barbarabanley6798 I tell you, too many men think they are smart and have created all kinds of abuse for women, But I tell you again, they will stop laughing when they stand before GOD, who is testing hearts. Maybe a female doctor would be better. I have one here in Greece. Didn't choose her, but was sent to her. Thyroid.
I had my period show up… despite the fact thatI had gone through menopause a few years ago. I had been irregular all my life,so didn’t think it was important. I checked on line and that was what prompted me to see my doctor. So, ladies, beware and be aware.
Retired Nurse here, it’s a tough call as to when to go to the doctor. Jessica was wise to set a time limit if the pain didn’t go away. If you go to the dr for pain, they will ask you how long it’s been going on, if you say yesterday they will probably not be concerned. If you have persistent pain then see your dr. Waiting 2 weeks is not going to make a difference. In an emergency of course go to the ER. Pain for a weeks needs attention. Go Jessica 😅👍
Hi Jessica. So sorry for you, I know it's not easy. You look like you are having a pretty good day, which is great. I feel like science is letting women down. I have family and friends who have had ovarian cancer. I always say people can go to the moon but can't find cures for diseases! Just baffles me. Praying for you and Brian. Each time you make a video you will have to show us your shirts. :)
I agree. Very baffling how behind the times the science is on this. It's a fairly "rare" disease so I think that might be part of it. 22, 000 women a year diagnosed in U.S. Not as much as many other cancers. No excuse if that's it. I got diagnosed with it last year and am finding my care just awful. My doctors are downright hostile to me. Sucks.
Wow. I'm so glad you made this video. I was diagnosed with ovarian cancer last August. It was an incidental finding when they took out my uterus. I was lucky it seemed to be early stage but the surgeon didn't stage me because he didn't know the ovary had cancer in it until after the surgery. So here I am every three months getting a pelvic exam and a CA125 which is normal. I am very interested to hear that your CA125 was normal even though you had pretty significant ovarian cancer. That's really good for me and other women to understand, that the test doesn't mean all that much.
One thing I do want to mention is that if you do have a close relative with this disease like immediate or close extended family, that's a pretty big head's up to get the CA125 and transvaginal ultrasound. However, as you so aptly put, even doing that isn't necessarily going to pick it up and/or extend your life if you have the disease which I don't completely understand but is very depressing.
I have a question for you. Actually, I'll start another comment with my question since I am so deep into this long comment. Sorry. : )
I am finding it very very troubling that there is no good test for this disease, even with me now in the surveillance mode, I am not particularly assured by the pelvic and CA125 exams I am getting.
Another thing is some things put women at higher risk in addition to the genetic/familial component. One is not having kids, two, being Jewish heritage, I think starting menstruation early is another one... there are more, you can find them online. I'm not sure if ovarian cancer has an estrogen driving component as in if you are overweight you are more likely to have it? I am quite overweight. So, yea, that something to look into.
Ok, I'm going to start a new comment with my question.
I want to say to you, sorry, I'm new here, don't know your name, but to this brave woman making this video. Honey you are smart, brave, have a wonderful attitude and a generous spirit. Yes, great idea about bringing in guests and just getting as much info about there as possible. I think you said you are at Mayo Clinic. That's a good place to be getting help. Thats important, too. You are an inspiration, and you stay strong.
Is it common for an overian cancer patient if the CA 125 test exceeds its limit like 100. Does it mean that the cancer have got back or it could be just normal please let me know waiting for ur reply
I love how empowered you are, Jessica. Mindset can make a huge difference in a person's experience. I look forward to hearing more about how you're doing. :)
This is great to reach your subscribers and educate as many people as possible. The best advice, as you said, is to know your body and don’t delay if something feels wrong. I had no symptoms other than urinary frequency and constipation. No pain at all but I knew this was unusual for me. I was also fortunate to have a doctor who listened to me and ordered the trans vaginal ultrasound and from that my diagnosis was suspected and then confirmed through surgery done by a gynecological oncologist, also important. My doctor initially said stage 4 but was later upgraded to 3C. After chemo I have had no evidence of cancer for almost 7 years. Keep doing what you are doing and I wish you all the best.
I refuse to believe that yearly ultrasounds would not reduce ovarian cancer deaths! I am an 11-year ovarian cancer survivor. My cancer was caught at stage 1 because I had fibroids and had had an ultrasound a year before I had some symptoms and had a second ultrasound. The fibroids were ok, but the radiologist could see a cyst inside one of my ovaries. He saved my life by looking beyond the fibroids and seeing a small cyst. Cysts are common and often resolve themselves, so my primary physician said to wait a few months and get another ultrasound to make sure my cyst was gone. I forgot all about it, but my dr made the followup ultrasound appointment for me and I then found out that the cyst did not go away, but was larger. That started me on the road to a surgery to remove that ovary, and the cyst did turn out to be cancer, so I had 18 weeks of chemo and then a full hysterectomy (I was past menopause so it was an easy decision.) My oncologist said my symptoms that led to my ultrasound (where the cyst was found) were not from the cancer, and I would not have felt symptoms from the cancer for another year or more, after it spread. So periodic ultrasounds saved my life, as did a talented radiologist, and my primary physician who made sure I had the followup ultrasound. Anyway, I bet if men got ovarian cancer, there would be a test for it already. In the meantime, ultrasounds for other reasons are the best chance women have to have their ovarian cancer found early. You have my best wishes for successful chemo and a cure, not just a remission. I hope we are both here 11 years from now to celebrate life!
I'm so glad you told us there's no test for this, I mistakenly thought pap smear also tested for ovarian cancer. You're a champ for using your voice to help others when you're facing this. Praying for your swift and full recovery.
Similarly to ovarian cancer, rectal cancer goes unnoticed. I had no symptoms at all! It just sickens me though because if doctors had done a digital exam like they used to, mine could have been caught way sooner!
you poor little thing. no symptoms at all?? good lord!
yes what u are saying is true. im so sorry yours wasnt caught sooner. wishing u hugs and healing.
ps...i think Farrah Fawcett died of rectal cancer over a decade ago? i figured that because a celebrity died from it, there would be more research dollars assigned to it but i dont recall seeing any public awareness works surrounding rectal cancer?
As someone who suffers with lots of health issues, especially auto immune issues, I feel your frustration with medical technology and how it seems to be so lacking. Even more frustrating is that insurance companies decide when and how often you can be checked for certain issues. Sending hugs and prayers!
I saw so many specialists and had so many scans for my symptoms only to find out that it was low vitamin D.
Once I started researching how important vitamin D levels are in preventing autoimmune issues and hard to detect cancers (like ovarian cancer), I was angry. Why is such a simple test that can affect our health not part of regulate bloodwork panels?
You are your best advocate ❤️ trust that you know your body better than anyone.
You are 100% correct! The insurance companies use humans to make money off of but we are not their prostitutes! Your vitamin D blood level is one of the most critical markers because if it is low you will get many diseases including diabetes, heart disease and cancer but insurance and doctors put every roadblock in the way of getting your vitamin D measured because they make money off of all the diseases that the low vitamin D causes. Ideally the vitamin D blood level is between 60-80 ng/ml
With your grandma having ovarian CA-if you made the drs aware in your family history the dr should have been exploring more with you. I am so sorry you are dealing w/ the ca. You posting this information is so important and my hat is tipped to you.
Whoa.. here in Germany my gynecologist did check me once a year with the ultrasound, it's normal.. so sorry to hear your story, thank you for sharing and I hope you will get well very soon.
So it's the standard in Germany to check with ultrasound once a year?
What? I'm in the Netherlands and aren't allowed to go the gynecologist without specific symptoms
@@sl4983 i think it is, especially if you have symptoms.
@@smallbeginning2 it depends on your age and symptoms, yes.
@@smallbeginning2 but you should go to a yearly check up to prevent cancer. After hpv negative it could be after 3 years.
Thank you for posting this. Its a taboo subject that needs to be discussed esp as specialists saying it's rare for under 30's to fet it.
I've got a friend who lost her daughter to ovarian cancer 18 months ago who was in her mid 20's when diagnosed and died when she was 30. Her parents have set up a legacy in her name on Facebook.
The old Line... to be honest
I followed your channel because you were losing weight from "plant-based " dietary eating. Something I believe in.
Your channel morphed into a very serious issue,, Wow. I can't believe how honest you have become. I wish you the both the best
It's good to get something checked when you think there is something not right. You might not even be able to be seen for a month, possibly even longer for your first consultation, so time is of the essence. Jessica, I wish you all the best!
if you have family history of cancer, get regular check ups. I had ovarian and breast cancer in my family. A regular check up showed some cysts. I insisted they be looked at rather than a watch and see. I went to my gynecologist I had in Virginia and she had a scan done. Since I had "chocolate" cysts meaning there was matter or blood in the cysts. We agreed that they should be removed and tested. A week after having both ovaries removed, I was back for a full hysterectomy. It was stage 2 there were no symptoms. But because of strong family history my doctor and insurance agreed to removal of both ovaries. It could easily have been fatal but I always had in mind my family history. So if it's hard to notice symptoms early on, at least be proactive in testing regularly especially if someone in your family has a history of cancer. I wish you the best and thank you for letting others know about your experience
Thank you for the great video. The only reason that I found out at stage 2B, was because I started having a leaking bladder that I was having checked out. I always had my yearly screenings and regular Pap smears. They finally did a transvaginal ultrasound that detected two ovarian tumors. One was the size of a grapefruit and the other was the size of a plum. I wish they automatically did a ÇA 125 as part of the yearly exam for women. I understand why the do not, but I think it might have helped in my situation.
Maybe the CA 125 (which I had not heard of before) and the ultrasound every year would be good.
This is a good example of why simple palpation is a poor test. You may have had masses that were missed by your doctor. I have 1/2 x 1/2" fibroadenoma in one breast. It has not been detected by any doctor doing a routine breast examination in over 30 years. If I show the doctor where it is, they can readily feel it, but have never found it on their own.
Hi hope your doing well. I know this is from 2yrs ago but I had a transvaginal ultrasound and came back with mass on my ovary. It doesn't say cancer just listed as a cystic stucture I'm wondering if that's how yours came back.
I had bladder cancer and it’s the same situation as ovarian cancer. Took 2 years to finally be diagnosed. No test to determine diagnosis. Scoping and biopsy to diagnose. Mostly caught in later stages in women. I saw 3 urologist until I finally got a CORRECT diagnosis. Incorrectly diagnosed as “OVERACTIVE BLADDER” for years. At this point it had invaded the muscle wall. Frequent urinating was my main symptom, no blood. May I suggest homemade bone broth and fasting to get you thru chemo. I was a huge help for me. Chemo wasn’t too bad until my last treatment. Last treatment was horrible. Don’t give up! You’ll get thru it. Good luck in your journey.
Please know Jessica that Ovarian cancer is never yours or anyone else fault. Thank you for passing on this information, it is good for all women to know this information. Your explanation was very thorough.
Thank you for this informative video! I’ve often wondered why we all can’t get a full body scan every year to check all of our “systems”. 🤷🏼♀️
Yeah, me too
Radiation
I think that's a good idea, too. But CT scans can be hard on the kidneys, so I don't know.
They would find all sorts of things that aren't necessarily "normal" but that don't actually need treatment, so there would be huge numbers of unnecessary procedures and fear.
An ultrasound should be given to check things. Easy peasy. Why isn't this offered?
Beautiful miss Jessica who is an inspiration - thank you for sharing your journey. You have peef bear on one shoulder, and a guardian angel on the other.
You did a great job raising awareness Jessica, so thank you for that. It just sucks. You were doing all the right things and I'm so sorry you're going through this. Those of us that aren't can consider ourselves extremely lucky because as you said, there is no way to know about ovarian cancer until you have sypmptons. It's frightening we don't have a test for it. Take good care of yourself!❤
Thank you for sharing so honestly. The truth of what you say is courageous and really helpful to us.I'm not religious. But I pray for your recovery because the world needs people like you and Brian.
Thank you for sharing your story. I’ve been doing research and trying to read stories because I’m scared. My mass was found on my left ovary after experiencing intense abdominal pain and the mass causing my ovary to turn on itself. I was rushed to the hospital and they were scared to touch me because a OBGYN specialist and oncology were not available. I was discharged and am scheduled for my surgery next week. Everything you talked about has been my experience and I’m scared. I just pray all is well and no cancer is found. Thank you for sharing your story.
After my sister was diagnosed at late stage 4, she told me that one thing she had noticed was post menopausal ovulation pinching sensation that she had in her fertile years. She didn't go right in because she was in between insurance with the change over to medicare. Sadly, years earlier she tried to get her OBgyn to do the CA125 test (as did I) and was told it wasn't reliable enough to use... Wish she would have insisted. Anyway, I too started having the reemergence of pain during ovulation so I went in and they did internal and external ultrasound. It is frightening to think that most testing is not conclusive. Thank you for sharing and please add the above symptom to the list people may want to watch for. Giant hugs to you and Brian and Peef and your fur babies.
There is something called mittleschmirtz.. spelling? .. you can have painful ovulation without cancer.. just FYI.. the pinching feeling may be totally independent of th CA.. but maybe it was!
An elevated CA 125 can be caused by non cancer causes and not everyone with ovarian cancer will have an elevated CA 125
@@CassieDavis613 exactly. I've been told its not a screening tool but more like a tool to check for the rise or fall during the course of the disease... and if suspected .. with all that being said... it could be used more often ? That and more TVUSs. And better exams... I went to a gun with post menopausal bleeding and he didn't lay a hand on me.. just said its normal , I asked for tvus due to symptoms and past issues... he agreed..there were 3 concerning findings.
@@Katie-vy5rd was just adding to the possible symptoms to watch for and prompt a check-up.. This is such a hard one...
M freaking out 😢n i watching ds video. That to in month of September. I pray for ur speedy recovery❤sister
Hang in there Jessica. I hope sharing all this online, even though it’s all so frustrating, provides you strength and comfort. We are pulling for you!
I totally agree that there should be some type of screening for not only ovarian cancer but I have endometrial cancer and there is no screening for that either…..my only risk factors I had was age and possibly frequency of urinating…😮….I’m 68 and never had an abnormal Pap test either…….
We should all band together and demand some type of screening!!
👍🤗🫣🙏🙏
By the way my cancer was stage 4…..I’m doing well now with total abdominal hysterectomy and 6 rounds of chemo….no evidence of disease….I’m feeling like my old self and looking forward to life again…🤗👍❤️.
Hello @Safari. Blessing to you❤❤❤ I hope you remain “No Evidence of Disease” 🤗🤗🙌🏻
Do you mind if I ask how they knew or diagnosed the endometrial CA? I just had a TVUS and showed endometrial fibroid, polyp and ovarian something or other type cyst 2cm.. its been about 4 -5months and thinking about scheduling with a doc to discuss.. the nurse who told me results didn't think anything was too concerning..
@@Katie-vy5rd they did a biopsy and an vaginal ultrasound ……👍🤗🙏
@@lulamamie8524 thank you I’m feeling great back to golfing/walking…..I walked through my chemotherapy and surgery….I really think it helped me recover faster….❤️🤗👍
@@safaridreamer5831 thanks for the reply! Glad to you are doing well! Good job to have caught early enough. 🌼🌺😺
My grandmother also had ovarian cancer. You are so Brave and love that you are educating everyone. god bless you.
Thank you so much for sharing all this info. I have my pap scheduled for tomorrow. I have been so scared of cancer because my 6 year old son (5 at the time) was diagnosed with ALL Leukemia and he really needs me. Jessica I am sorry that you are going through this but you have a lot of ppl cheering you on! You can beat this and kick cancers ass!!! 👊🏽👊🏽👊🏽 we are right along side you!! 💪🏽💪🏽💪🏽💪🏽💪🏽
bless you and I am sending good thoughts for your boy! 💗You sound like a strong momma! 💪
A Pap smear is great, but will only diagnose cervical cancer/cervical abnormalities. Uterine and ovarian cancer need other tests to be diagnosed.
Yes, everyone must advocate for their own health! I had to push for my own diagnosis of another type of cancer that is also hard to catch early. Some of the symptoms you mentioned for ovarian cancer also apply to uterine fibroids, especially the heavy periods. Hang in there Jessica! You are such an inspiration to everyone that must face such a terrible diagnosis as cancer!
You sound so upbeat and energetic telling such a devastating stroy
Im currently being tested for cancer and have a tumor growing near my bladder and bowel etc
...and cant imagine how you feel living with such prognosis.
...and so many problems.
I experience severe pain daily and wonder how "you" cope .
Ive watches close relatives and pets suffer with aggressive cancers
...but they were never as energetic as you .
Wishing you so much love, light and peace
Bless you and have a very merry christmas
Hope you are okay now
Xxx
No question is stupid. Everyone deserves an answer.I pray that you are Cancer free, soon! Thank you for your informative video.
I went through Endometrial cancer a few years ago. A very frightening experience and I pray for you, Brian, your family, and your team of doctors each day. Sending you and Brian much love!
Unfortunately the papsmear does not screen for endometrial cancer either. As a cytotech those endometrial cells may be shed during a papsmear but usually not.
How did you screen for endometrial cancer? I am concerned about it
@@DaniElle-di4ho the gyno takes a biopsy of your uterus wall... thats how mine was caught because I was bleeding a lot. ( I also did an ultra sound first to see how think the uterus wall where )
@@DaniElle-di4ho I went in because I was having an extremely heavier than normal period. They did a pap and ended up sending it to Mayo clinic because their testing came back suspicious, but they couldn't tell more than that. Mayo is the one that found it.
I'm here because I'm freaking out. Found a large mass on my ovary. Estrogen levels are out of control but my CA-125 is normal. I don't know what's going on, but thank you for providing this video. The information itself is comforting regardless of what is going on with me. I wish the best for you.
Where I live (Puerto Rico) the ultrasound is made in every check up. Is so strange in the states do not do it. This information that you’re sharing is eye opening and helpful.
Thank you for creating this video! Symptoms were considered ‘normal’ for me. One DR at my emergency room visit looked further and alerted me, I had removal procedure last week, had I not had a team of healthcare professionals walking me through the tests I wouldn’t have known.
You are doing such an important service in educating people! Also, you look super cute in your flower hat - own it girl!!!! Praying for you both every day! ❤
You are an amazing strong women. What a great thing you are doing with this informative video! Ovarian cancer is so elusive.
My mother, my fathers sister and mother all were diagnosed with ovarian cancer.
May the peace of Christ surround you and strengthen you on this journey.
Peace.
We’re all pulling for you J! Thanks for taking the time to make this video for others. ❤
(PS my parents did a raw food diet when my dad had prostrate cancer, it made a huge difference in his overall health and his oncologist couldn’t believe how fast his blood counts improved.)
I am with you with the body scan. Ovarian cancer is so hard to diagnose due to where the ovaries lie. My family has no history and yet my Mother and I both had pre-cancer/Stage one. Best of luck to you and Thank You for sharing.
Hi Jessica. Thank you for sharing your story. Considering your family history you may want to get genetic screening for the BRCA gene. If you do test positive then your insurance company will pay for more frequent screening such as MRI and diagnostic ultrasounds or even "risk reduction surgery" (mastectomy in your case). Just a thought. If you are positive for the BRCA gene it means you directly inherited it from your parent who inherited from your grandmother. The gene does not skip a generation. Just some thoughts to consider. God bless you and Brian.
Every woman’s annual exam should have a CA125 blood test!
To elaborate a bit more on ovarian cancer screening (from a junior doctor who is by no means a specialist in oncology or statistics, but who probably has a bit more of an understanding of how screening tests get developed and funded than the average person)
There are a few things that get taken into account when assessing a test as being “good” as a screening test in asymptomatic people. This might offer a bit of an explanation as to why CA 125 is not recommended as a screening tool in asymptomatic women.
Specificity - This refers to how well the test identifies patients who do not have the disease. It compares the number of patients without ovarian cancer who have a negative test (true negatives) and the patients without ovarian cancer who have a positive test (false positives) (i.e. there is another condition that makes CA 125 high). In this case there are a few - including endometriosis, liver disease, menstruation, pelvic inflammatory disease, pregnancy, fibroids - that could cause CA 125 to be high. A good screening test would need to be very specific to ovarian cancer.
Sensitivity - This refers to how well the test identifies patients with ovarian cancer.
It compares the number of ovarian cancer cases that are detected by the test (true positives), compared to the number of ovarian cancers that are missed (false negatives). A highly sensitive test means most cases of ovarian cancer are picked up by the test. Sensitivity is really important with regards to being able to detect early stages of disease. The CA 125 is not great at this, picking up only 50% of early ovarian cancers, vs 85% of late stage cancers. Because of this, if someone had no symptoms or vague symptoms, but had a normal CA 125 at an annual check up, it could be falsely reassuring. This is the main reason it is not recommended as a screening test in asymptomatic people. Someone like Jessica, whose CA 125 was not elevated, would have been in the 50% that were missed.
CA 125 does have its uses. It is used in patients with confirmed ovarian cancer that do have a raised CA 125, then it can be used to assess response to treatment (i.e. if it is going down, then the patient is likely responding to treatment) or to assess for recurrence (i.e. the patient has had successful treatment, and it is monitored over time).
In the case of ovarian cancer, when early diagnosis could be absolutely game changing - a screening test is absolutely needed! It’s just CA 125 isn’t perfect for the above reasons, and we don’t have a good solution yet. There are other things we can do, and which the Krocks are doing an incredible job at - raising awareness, educating about symptoms, encouraging patients to advocate for themselves and share their own stories, and encouraging clinicians to consider ovarian cancer earlier on (before it is literally staring us in the face.) I have certainly learnt a lot from Jessica sharing her experiences.
@@blinkybill2803 You are absolutely correct about why the CA125 is not used routinely. However, there are many tests that have poor predictability but are in current use. Take the Prostate Specific Antigen (PSA) test. It doesn't predict prostate cancer even 50% of the time. But now, it is becoming the preferred test over the digital rectal exam (DRE), and is being offered to even younger men, to set a baseline. All covered by insurance companies. There are definitely health disparities between man and women and I think this is one of those areas. For example, having a doctor stick their fingers in your vagina and vaguely press around your abdomen trying to "feel" for a mass is as unpleasant as a DRE and only predicative if the mass is large. This farce of an ovarian cancer screen could/should be replace by a simple ultrasound. In addition, there are many ovarian cancer genetic markers than just CA125, including BRCA1 and 2. Why aren't all individuals who are assigned female at birth (AFAB) screened for these markers in their late teens? If you don't have them... great, normal screening for you from now on. If you have one or more, then you get enhanced screening, as appropriate. There is a lot that could be done for earlier diagnosis with the tests and tools we have now, especially for non-breast cancers that affect AFAB individuals.
Oh 100%, lots of things are done routinely that are not very helpful. In Australia neither the college of gynaecologists nor the college of GPs recommends bimanual pelvic exams in asymptomatic women anymore (as part of well women checks), and I think the ACOG in the US doesn’t either. But how many women have this quite invasive examination done yearly, which could also be falsely reassuring.
People with prostates in AUS usually get pretty in-depth counselling about how PSA is an imperfect test before deciding whether to do screening. There isn’t really a good reason why that couldn’t also be done for people with ovaries, with things like genetic screening or tumour markers.
The barrier with radiological screening would be getting funding (either from the government with socialised medicine, or insurance), in order to pay the ultrasonographers and radiologists required to do and report the test.
Also need to consider the health disparity due to poverty, and that in a country like the US then even if these tests are encouraged for screening, there is a whole subset of the population who would remain disadvantaged.
Basically there’s a lot that needs to be improved
Fern, you are so right!!! Women are dismissed, period. Men have all these advantages over women's 'health care' or should I say quack care?
1-2x a year!!! also, if the BRCA is present, instead of mammograms Breast MRIs should be standard. My insurance co will not pay. I have BRCA! $3600 on them vs the enormous cost to treat cancer????
The oddity of the yearly check up is that they don’t do the finger up bum and ultrasound, which should also be standard for ALL women!!!
Not all women know they have BRCA gene. So meant reasons not to get tested. People who are from poorer communities, may not ever know they had cancer in their body. In many communities, ANYONE can be a Corner (this is not right the mortician that is elected - I can’t think of the word - akin to mortician).
Also, want to know why women are diagnosed so late? We women are always written off!
My female PCP, who? Actually I’m not with her anymore because I hate her that’s not nice but I HATE her, she knows I have the Bracha to mutation and I requested when I first moved to her at her clinic to get yearly referrals for my mammogram MRI , and my annual check up every six months with the ultrasound and the CA, 125 bloodwork as per previous protocol. This woman said to me when I was 35 years old, “at your age, you do not need to worry about this you are too young. Anyhow, most people who have the BRCA mutation most likely will not get cancer.”
We aren’t friends. Lol
Also, she wrote me off when I was hunched over in so much pain due to Acute Pancreatitis (not alcohol related nor was I aware of what was going on) and was dismissive of me. I ended up in the hospital in and out and it had been over three years now.
I have now learned that the BRCA mutation is related to Pancreatic cancer also. Not kidding.
Point? Don’t let the doctors bully you and remind them they work for us!!!!!
Thank you for sharing your journey.
It's so awful that cancer patients need to share that they weren't "negligent " in their Healthcare. My son had a huge softball size tumor next to his liver. Good news that it wasn't cancerous- but first symptom was that he couldn't hold down food... because tumor was so big. It's crazy. Also, love the hat!
Thank you for sharing. God bless you and your husband. I pray for you to be healed completely in your body and life🙏❤️
Thank you for sharing this information and your experience with ovarian cancer. You are helping many women.
I was dx with stage 3c ovarian cancer back in 2012.
My grandma fought ovarian cancer for 9 years. She was diagnosed at a late stage. Her first sign/symptom was bloating. She could hardly put her pants on and she wasn’t a large woman. It’s been 12 years since she passed. We’ve come to learn that our family has the BRCA gene mutation. We believe my grandma had the gene mutation as she had breast and ovarian cancer. Both my mom and aunt have the gene mutation and my aunt has had breast cancer twice. I (thank God) do not have the gene mutation. With your grandma having ovarian cancer and you having it at such a young age I would highly recommend you get tested for the gene mutation asap. It may help you and other family members be aware of the increased risk of cancer if you’re positive. Thank you for this video and thank you for spreading awareness about ovarian cancer!
Sending you some love I was diagnosed 3 months ago had first chemo didn't realize it would knock me for six I keep saying we've got to try and fight this horrible thing but it's hard I'm 53 I had hysterectomy in 2013 they were supposed to remove my fallopian tubes but they didn't now I have ovarian cancer stage 4 stay strong and keep goingxxxx
Thank you for being vulnerable and sharing your journey with us. Continued thoughts and prayers for you and Brian.
So glad I found your video, My mom had ovarian cancer pretty young and here I am having every symptom associated with Ovarian cancer. Fingers crossed it’s just a cyst. Appointment Monday for Sonogram.. you’re so inspirational and thank you for sharing your journey with us ❤
Did you find anything out?
How did it go? I'm in the same situation myself....they are testing for ovarian cancer.
Women have been under treated forever! It is/was common to chalk everything up to “hysteria “
Great info , thanks for being so brave to share
Keep fighting!!💕
Ya, just give women antidepressants instead of actually doing the work to figure out what the symptoms are. 😳😡😳
This is really important information, especially since they aren't even doing PAP smears every year anymore, so the woman's exam, including checking the ovaries manually, may not be done even every year. I think they should do the ultrasound every year, at least. My doctor did one at my last appointment and it only took a few minutes. I didn't need a separate appointment like I have in the past with other medical groups.