You must do what you feel is best for you. Don't be afraid to change doctors if there is something about them that you aren't happy about. You must advocate for yourself. Keep records on everything so you know what treatment you are getting.
I have read that bleaching our hair blonde can lead to bladder cancer but I still play around with my hair. I'm so sorry about your news. Wishing you all the best. I might stop messing about with my hair now.
Just to listen to your body…if you feel that something is wrong, do not be afraid to switch doctors, until you are sure you have found the right one.And one more thing, i have learned from the cancer cell: if a cancer cell is fighting that hard to survive, we should do at least that much for our selves.
Can comment on the experience of someone very close to me who was basically in denial about the seriousness of seeing blood in urine. Luckily I saw it & immediately Dr. Google led me to request that an appointment be made with a Urologist. Surgery , tumor removal & on seeing a Urology Oncologist bladder removed. Thank God 4 years later and the patient is healthy & leads an active, productive &fulfilled life.
When my husband was diagnosed with stage four renal cell carcinoma six years ago, I annoyed the hell out of doctors because I asked so many questions. Being a recruiter in the pharmaceutical industry, and placing doctors in new in industry, I saw them more as candidates, and less as “gods”. I was used to negotiating their compensation packages, so they did not intimidate me. Thank God, because I demanded second opinions which ultimately I believe saved my husband’s life. 6 1/2 years later, he golfed 18 holes today. After the first meeting with the initial oncologist, they had given him a year. Sending you lots of positive energy and vibes, you got this! ❤
I was diagnosed 2 year's or so ago that I had RCC but that I didn't need to worry it's growing slowly ???? I asked why they think it's cancer I had cancer in 2014 in my breast her2+ metatisized anyway I got letter the other day asking me to come to hospital next year October I'm fuming a dunno what to think now but I did get the RCC on screen on my phone..I also had heart attack last year 2 day's before my daughter's birthday but hopefully this year we can spend time together ❤️ hope everything goes well for you Michelle I shall pray for you dear 🙏🏽
Thanks, Michelle! I DO got this and appreciate the love and support we receive from other patients who share their stories and encouragement, like you❤
Michelle, I am so happy that your husband had a good recovery. My young husband with stage 4 renal cell carcinoma did not make it. We were lucky, though in that the oncologist office we went to had three doctors. Each had close connections to a different nationally known hospital. I asked questions constantly and they were unbelievably patient.
I went for my first colonoscopy in 2021 and was diagnosed with colon cancer. As a mother of 4, the news was devastating. As a Christian, I have no doubt that God saved my life. A kept hearing a small whisper, to get tested. I had no symptoms, and was under the age of 50. This was a stage 1! My Drs were perplexed and kept asking what made me decide to get tested. My response, “I listened to that still small voice.” I’m inspired by your story. Wishing you the best of health.
Thank you @PaulaTaffeAdams ! I'm SO glad you listened to that still small voice! Our instincts, intuition tell us what we need to know. Our choice is whether we listen or not. I hope you are recovering so you can be there for those precious children!
Margo, my experience was identical to yours: no pain, no burning when I urinated. I bled massive and made an appointment with my PCP. When he saw my urine specimen, he immediately called a specialist who wanted to see me right then. That doctor waited for me as it was after office hours. After the exam, he told me that I had a tumor. I asked what that meant and I’ll never forget his response. “You have cancer.” That was on a Tuesday and I had the surgery on Thursday. I watched the procedure and saw the tumor. Luckily it had not invaded the bladder wall. I had it twice more and each time the tumor got smaller than the time before. For three years I had my bladder checked every six months, after that once a year for fifteen years. Every time I see a new doctor, I get asked if I smoked. I had smoked for eight years but had quit cold-turkey fifteen years before. Every time the doc told me it didn’t matter how long ago I had quit and that smoking is the #1 factor in bladder cancer. I was very lucky. I know about two people who didn’t survive it. Unfortunately my luck ran out six weeks ago as after an MRI, it was discovered that I have renal cell carcinoma, found by accident as the MRI was unrelated to the cancer. We’ll see how it goes. I’m very happy that you got through this devastating experience. I’ve made the decision that if worse comes to worse, I’m not going to go through chemo and radiation. Just keep me comfortable. I’m 80 years old and have lived to be much older than both parents and also two younger sisters. I’m ready to go. Hopefully I’ll beat this one too.
My prayers and thoughts are with you! I’m just starting with the diagnosis of blood in my urine! I’m in my early 70’s but have good thoughts and hope for as good as it can be! God bless you!
Hopefully it’s a UTI which is easily taken care of. If it turns out to be cancer, my best wishes for you. In my case the three surgeries were short and I drove myself home afterwards. The word cancer in itself is devastating but not nearly as much as even ten years ago. I know this will be difficult but try to keep a positive mindset. Best wishes, Diane
I too had two types of tumors in my bladder. High grade muscle invasive bladder cancer. Only symptoms chronic UTIs no visible blood. I was almost blown off by doctors but thank God a cystoscopy was done. Bladder, uterus, appendix and 22 lymph nodes removed 1/7/2019 after 5 rounds of MVAC. I’m so glad you are here to tell your story. ❤sending my love to you
Hello, happy you are doing well *edit.. I read another comment of yours and saw all your complications and things you're dealing with after the fact * so sorry you had to go through all that! When you say chronic UTIs.. do you mean actual diagnosed UTIs (by urine cultures that actually said you had bacteria) or do you mean symptoms of UTIs but there was never actually an infection? I ask because everything out there says symptoms of UTI mimicks bladder cancer but doesn't specify if actually having diagnosed UTIs is a sign .. because the symptoms can be explained by the urine cultures being positive
@ Thank you. Yes it’s confirmed cultured UTIs. I have had one now for 20 months that every time I stop antibiotics I get so sick. Fevers, chills, terrible smelling pee.. I’m working on finding the cause.
When I started getting sick with Ovarian cancer, I had little to no symptoms, one of them was urinating too much. I talked with my primary doctor and it was not looked into. Also, I was so exhausted all the time. However, I was running my own daycare and working very long hours. That was just about it. I started to get sick the day before I went the E.R, but I knew the next day would be Friday and I just decided to suck it up. Six hours after being in the E.R., was the first time I heard cancer. I have learned to listen to my body. Rest when I am exhausted. Don't be too hard on myself. Also, to live in the moment. It is okay to be on depression and anxiety meds, it helps me live in the moment. Also, Ovarian cancer might take my life but not today.
Love your determination to seize the day, Donna! None of know how long we have on this blue planet, so enjoying the present is the best gift we can give ourselves!
I had 1 possible symptom of Fallopian Tube/Ovarian Cancer prior to being diagnosed with stage 3C in March 2016. I had right pelvic pain for several years. A couple of times throughout the years, I would see the gyn for the pain. I had a few CT scans which did not show anything. When the pain persisted and CT scans came out negative, I requested the tumor marker blood test and was always told no, your scans are good, insurance will not pay for the test. I responded well, I will pay. I was never given that opportunity to pay for this test on my own. I tried so hard to be my own advocate but when a dr(s) is not listening to you and they have already made their mind up about what is causing your pain, you feel helpless. If it wasn’t for me getting flu like symptoms in Feb 2016 and then several days later getting red spots all over my body, I would never have known anything was wrong with me. It was my primary dr who saw those spots and said I think you need a CT scan. Finally, the scan showed enlarged lymph nodes on my right pelvic area. I will never forget reading that report on my portal and the last few words were “patient should be referred to an oncologist”. That scan was the start of this nightmare called cancer.
You are so right Margo. We have to be our own advocates and never, ever care about hurting a doctor's feelings. Your life is more important than that. And one more thing everyone....remember Doctors are not Gods. Doctors work for you so as Margo said there are good doctors out there and bad doctors out there. Find the best because you know your own body better than anyone and never forget....the Doctors work for you. Fire the bad ones until you find the best. God Bless You Margo and thank you for making this video for all of us. Sending lots of love and prayers to you.
5 specialists looked at my MRI scan and one suggested it be investigated for cancer. My GP refused stating it was only 1 doctor out of 5. I was diagnosed 10 months later with stage 4 carcinoma. I wish I had listened to that one specialist.
I have been diagnosed with aggressive stage 1 T1 bladder cancer. My urologist encouraged me to have a 2nd opinion. I now have appt with another doctor to be sure my diagnosis is confirmed. Very useful video. Thank you for sharing your experience. Very happy you beat this cancer. I'm waiting for my appointment & hopefully good results
Biggest lesson learned: Don't wait! No cancer in my family either. Last January, I got a pain in my lower right quadrant while out to dinner with a friend. I ended up leaving, going home and laying with a hot water bottle thinking it was gas. Went to the ER, and I was blessed to have a Dr that ordered ultrasound and CT scan right there. He found a "complex cystic mass" on my right ovary. He ordered an MRI next day and a consult with a women's specialty gyno hospital. My pain went away the next day, and in 8 days I had a consult with a surgeon who specializes in wrns gyno cancers. She set me up for surgery. They discovered I had Stage 2 cancer on the right ovary, and some spread to the left fallopian tube. I got a complete hysterectomy and 6 sessions of chemo that ended mid June. My latest pelvic exam and CT scan showed no signs of anything. However, I will have to follow up for the next 5 years.
That's exactly what happened to me except my doctor only ordered an MRI then said to take more exlax. I knew something was wrong and 10 months later I ended up in the ER where they diagnosed me with stage 4 cancer. If my doctor had listened to me, perhaps I would have been as lucky as you.
Incredible interview! She checked out and hit on every critical step along the way and had the good fortune of working in the life insurance industry, knowing how to search and what to google. Really appreciate the fact that she figured out how to learn what she didn’t even know to ask, her urologist who didn’t refer her to a urologist/oncologist and that he didn’t have the equipment to do what was needed and, in fact, how important to have access to major health centers who do. I love that she didn’t need to demean or vent anger to advocate for herself. Really admire how she approached everything and, quite literally, saved her own life by having the courage and tenacity to learn.
Thank you for sharing. My dad was diagnosed with bladder cancer. He had no pain. His symptom was frequent urination at first. The blood in the urine came after. The cancer wasn't invasive. He lived for five years after. He was elderly so the cancer couldn't be removed. There is no cancer in my family.
Sorry for your loss. Currently, I am going through the same cancer. Could you please share more details like what diet your dad followed? It would be great help.
I was diagnosed with Bladder Cancer at the age of 33 (Low Grade Papillary Carcinoma, No invasion to smooth muscles and other parts). I underwent TURBT tumor was removed. No chemotherapy has done. But i do have a 3 months ultrasound for 1 year and every 6 months yearly then after. Thanks God Everything went to normal. God is good. Being diagnosed with cancer is devastating. Now that I am cancer-free, I hope everything will return to normal. I aspire for a life without any more remissions.
Many Marine Vets. have similar bladder cancer from Camp Lejeune contaminated water. Early diagnosis is key to extended life, even though long term prognosis cannot be guaranteed. Thank you for bringing to light how important it is not to sit back and wait.
I was born at camp Lejeune, my father was stationed there, my mom carried me and gave birth to me there I was saturated in the water,. I have had bladder issues my entire life now I'm peeing straight blood and passing blood clots, waiting to see the urologist now, I have a sneaky suspicion it's bladder cancer, they found a lesion on the wall of my bladder 6 years ago during routine . I'm pretty nervous
I am so glad you advocated for yourself. BCG is in short supply too, it has been for over a year. BCG is usually mixed with heparin and instilled into the bladder. Thank you for sharing your story
Thank you for your comments and support, P slay! I experienced the BCG shortage in 2020, since that is the typically recommended treatment for Stage 1 bladder cancer. Thing was, my doctor missed a 2nd form of cancer that would not have responded to BCG. Had I gone that route, I would not be here today. Which is why I'm such a big advocate for getting a 2nd and even 3rd opinion!
@@austintexaslivinghouses It is very scary that there is so many missed diagnosis and I am hoping you are doing well in 2023. I think physicians need to slow it down and really listen to the patient, we know our body better than anyone including a physician. I am so glad you did not go into " watchful waiting". I really like your quote, "we don't want to hurt our doctors feelings" this is your life. Continue to tell you story, I am sure you saved lives here. ❤❤❤
My dad was 89 & a life long smoker when he was diagnosed with bladder cancer. No symptoms whatsoever until blood showed in his urine. He blamed the red in the cherry pie he had eaten The day before. Seriously? When it stopped, his theory was validated… until it came back. First diagnosis- bladder infection. Later, a brief scan revealed 2 suspicious polyps. A further scan showed hundreds of polyps like stalactites & stalagmites all over the interior of his bladder. The urologist told him to stop smoking & undergo a chemo infusion that could be done in his office. Dad refused both. Fir the next 5 years he underwent numerous bladder wall scrapings that continued to thin the walls. He suffered from anemia, fainting, transfusions & dizziness. He was too old for bladder replacement surgery & too stubborn to quit smoking & have chemo. He died at 94 in a nursing home he hated. His urine looked like cherry koolaid & his tongue was full of thrush due to prolonged antibiotics. His sisters lived into their 100s, neither one a smoker. FIGHT!
That was a tough fight for your father at such old age. Since I am dealing with a similar bad situation could you please share any particular diet that you followed which helped you? Or anything which helped during the cancer journey.
Thank you for sharing your fight against cancer. Sharing information like yours about cancer journey is so important to so many who at some point will develop cancer. Our environment and food supply is so cancer producing🥶
It’s nice to believe that, but the most important variables that determine whether someone has a good outcome with cancer are the medical variables such as type of cancer, stage at diagnosis, and effectiveness of available treatment options. What you are suggesting is the problem with the battle metaphor with respect to cancer. It implies that those who die of cancer were not virtuous or strong enough to beat their cancers, which is empathically not true.
We certainly increase our chances of survival when we take good care of our emotions, as well as our bodies. Gaining and keeping a positive attitude while fighting a life-threatening disease is a challenge. Something really valuable I learned from my journey is to be kind with myself when I fall short of staying positive. Some days, I just didn't have it. Felt like giving up. And that's not me usually! Gentle, self compassion for all the experiences helped reduce my suffering.
Thank you! That means so much to me, because I enjoy telling stories and in some ways, wish I didn't have this particular one. But I do and I felt compelled to share it with the hope that it will help others facing difficult challenges. I also wrote a book about what I learned and you can check that out, if you'd like: amzn.to/3aPDs3t
Absolutely right about not waiting. My husband would have died immediately if we hadn't pushed for a diagnosis. Instead he lived 5 yrs. Even at that, it was a battle. And the urologist definitely should have directed her to the oncologist-urologist. I am a lawyer, my husband's sister was a board member of a prominent hospital where he went. I was appalled at the mistakes, sheer incompetence, and carelessness displayed by the surgeon (now under legal investigation for drug use) and the hospital. Never go into this type of illness without someone with you AT ALL TIMES POSSIBLE.
When we are facing health challenges, we definitely need support from people we love and can count on, even if that's by way of a phone, like I had to do during quarantine!
Don’t accept no answers, I AGREE! I am going through that now personally. Doctors don’t agree with what is wrong with me. Very disheartening! But I started feeling, don’t want to bug or annoy any doctor. For example a few years ago, I pushed getting a test sooner than usual, doctor finally approved it, the test led to surgery that the doctor said, saved my life!
Dr keeps checking with my bladder issues. Second time doing cancer work up. It’s scary. He didn’t find anything last time but testing is still scary. My neighbor died from bladder cancer last Christmas.
Did you back share the information with the doctors you saw, so that they’d be better informed for the next patients? Thank you so much for sharing your journey and perspectives. I pray you remain cancer free. ✝️
Lost my family to cancer, dad and three sisters, mom succumbed to another illness though had been treated for cancer. I have been diagnosed twice with cancer and these words echo in my ear as I write this note, John, you have cancer. Not necessarily the worst three words to hear when I think this over, Your Dad Died! I thought these may be the worst three words I would hear for a while though was wrong, indeed. I heard these words of a loved ones once more when my sister Linda died the following year of cancer and soon following her, Wendy passed away f cancer. I had lost my youngest sister Nila to cancer in 1970`s, she had a newborn child a few months before her demise in her early twenty`s. A few swift years after my mom's death I was diagnosed with cancer, I remember hearing these words, YOU HAVE CANCER though I was pleased with this, and I shall tell you why. My mother, Norma Jean outlived four of her beautiful children and wonderfully strong faithed husband of 45 years. She did not outlive all her children of which I am grateful to have her not leave with this thought. I as say, a few very short years pass when I hear these three words, you have cancer. I went through Chomo and also radiation treatments were used on a tumor in my head/neck in 2014. I am a cancer survivor and I have a story to tell! I am the son of Wndl n Jn
It sounds like the cause might have been environmental. Perhaps your childhood home? Buildings built before 1980 have asbestos. There was one street in my hometown where almost every family had at least one member who developed cancer. It all started after an industrial spill that had killed all the fish in surrounding waterways.
In most cases Cancer sneaks up on you without symptoms until you have had it for a while. Best of luck to you. I’m glad your doctors were frank with you as hard as it had to be to hear it. ❤️🙏
Super lady, what a spirit to match her acumen. Blessings and Thanks for your insights, courage and clarity. I will be thinking of you on International Women's Day for your leadership and grace.
I was also diagnosed with 2 cancers mine were totally unrelated. CLL and gallbladder cancer, exactly a week apart. Fortunately both were caught very early, so I’m good.
Oh my!!! So sorry you have had to go through all this! My husband has bladder cancer, in remission, and had his prostate removed due to stage three prostate cancer. He has checkups on both every year, started out 3 months, then 6 months, now yearly. Cystoscopes are very uncomfortable according to him! He has one bladder cancer removed, then again a year later, third year a scare, during surgery, found out it was not cancer…. Gotta take care of YOURSELF! Continue with physicals, bloodwork etc!
I have had bladder cancer 2x. The second time I did immunotherapy. Been ok for 3 years. Dr said we have to keep watching. I get my check every 5 years of my colon. I get pretty cancerous polyps. Thank goodness we catch them in time so we just keep watching.
Always ask for a second opinion. My dad had stage 4 esophageal cancer and was misdiagnosed stage 2 in San Antonio. Needless to say we went to MD Anderson and they were able to diagnose him stage 4 and get the treatment plan in one week.
Hi Julie! Yes, we will release Margo’s second segment Wednesday November 2. Let us know if there are other topics that would be helpful to cover in the future. Thanks for watching ❤️
Never feel bad about taking control of your own or a loved ones medical treatment. My husband had been diagnosed with Stage 3 Pancreatic Cancer. It's a very long journey of major malpractice, but in a nutshell, if I hadn't taken control and put my husband in the car and driven 3 hours to OHSU in Portland, he wouldn't be alive today. Due to their quick action and diagnostic skills, they were able to diagnose what was causing the life threatening complications (that were actually caused by a surgeon at St. Charles, they took action and today he is 3 years cancer free! When I had asked to have my husband transferred to OHSU, I was told they wouldn't be able to do anything more than what was currently being done. If I had listened to them, I would be a widow right now. You MUST take charge of your medical care!!!!
I had no symptoms either until the tumors literally started coming out over my neck rib cage etc. I had also acquired blood clots again in my legs. My diagnosis was non Hodgkin's Lymphoma Grand B Cell. I was 57 as well at the time it was diagnosed. It was the early days of covid so absolutely no visitors at the hospital. Nothing like poison dripping into you for 5days straight at a time to truly let you know what your made of!
It scares me that mri didn’t pick it up. I’ve had intermittent left bladder pain since Feb. Had cystoscopy, laparoscopy, mri, ct, ultrasounds- not showing anything.
Our bodies are so mysterious. Cancer cells and small tumors don't always show up, but the cystoscopy did, thankfully. Good luck finding the issue and treatment you need, Tracy.
OMG what a story, many twists and turns, and lessons on empowerment. It is so hard to do all the research she did, and sadly many people don't have good insurance. There isn't a good way to find doctors other than who is signed up with your insurance. That's just an alphabetical list of names. Websites that list opinions and ratings is highly subjective, and most have few responses. Many of those sites have been sued by doctors for negative reviews, so it's very hard to know who these people are.
Thank you! I have found this one of the most helpful testimonies. I have just had a cystoscope and a tumour was present I am booked for surgery Nov 22. To date I feel very uninformed and Dr,s are so over worked in Canada that my Family Dr. was annoyed that I call to discuss. At the time of my cystoscope the Urologist had no time for my questions. Very hard to not feel overwhelmed. So thank you for your time and sharing your experience.
Trish, thank you for watching! We are so glad to hear this story was helpful. Please let us know if there are topics we should cover that would be helpful.
My cancer story… whew 😥 … I had a kidney stone which was causing a lot of pain so I went to the ER … they weren’t sure if it was a kidney stone so the did a ultrasound to see if it was an ovary problem . The first thing that was strange was when while doing the ultrasound she asked me if I had had a hysterectomy because she couldn’t find my uterus. Well the results were that I needed a biopsy. Went to the gyno and he said well you have no symptoms so let’s wait till you do. Two years later I found a new Dr and she said why haven’t you had a biopsy and I told her what my retired Dr said. She said well we are not waiting…so I had another ultrasound and it was worse, my uterus was smaller and thicker. So I had a biopsy and yes it was cancer. So I got an appointment with the U of M and went there lucky I got in quickly. Within 2 weeks I had a hysterectomy and all looked good … he said one and done. Until the tumor board saw a more invasive tumor Papillary serous. And I would have to have 6 chemo treatments. Lucky it was new and hadn’t spread. It’s been 5 years and I am fine. I had not precursors at all and I had no symptoms at all. Thank you kidney stone or I wouldn’t have known.
Isn't it surprising how often we hear of some other health issue causing us to discover a more sinister disease like cancer. My 2nd bladder cancer, Plasmacytoid, is asymptomatic, disguises itself to convince the body its' cells are just regular bladder cancer cells. Nothing to see here!
What an awesome lady you are! Thank you for sharing your story! Blessings to you. I have a small story. Cancer came knocking in our family. My beautiful sister has metastasized breast cancer. She was a model of good health. Took care of herself wonderfully, expertly, always researching to attain the optimum health - no toxins, no bad foods, great nutrition, worked out. She was very careful. The unfairness of cancer is hard for me to handle.
Cancer is just $*&@. While I understand that life isn't fair, I'd be lying if I didn't admit I am still bothered by the unfairness! Sending support and hugs to you and your sister.
June 2022, I was in the bathroom ready to go to work. Going to the toilet I realised that as I was urinating I noticed a real dark colour like coca cola. Funny how it, was I'd thought am I dying. Waited a month to see if things would clear up. But then alarm bells rang, went to see the G.P. They took a urine sample and found blood present. I was told it was Hematuria. From surgery to biopsy I was told it was stage 2 bladder cancer. Broke down but the doctor told me you're very lucky we've caught it in time. Had 6 courses of BCG in the bladder. Had a sample taken after the course of BCG. I eventually got the good news that I was cancer free. But still gonna be having treatment to make sure the demons stay at bay.
I lost my brother after a fight. It just came back everywhere 😢 . I am going to follow you and of course I wish you the best. I am a fighter so I push. I have basal cell carcinoma but of course its quite treatable the biggest problem with me is I have Neuromuscular Scoliosis ++. Surgery is very soon. I had an UTI and let my PC treat me maybe a mistake. Good God take care I sending love ❤️ 🤗
Did you have the Safe and Effective?? So many health problems and worse, since 2021. I really wish you ❤ and regaining of your natural immunity against cancer and other illnesses!
I was treated for a uti for weeks. I had pain in my bladder and right side. Prescribed antibiotics. I then went into retention had to have a catheter for a week then I did isc four weeks. Got app for u/s and. At the u/s. App Tech said kidneys were fine but wouldn’t say anything about my bladder but there were abnormal cells so wait for flexi. I new then it was bad news. Turns out to be bladder cancer. I’ve had it party removed waiting to hear what’s next 😔 up date. I have to have my bladder removed asap. Then I will live my life like no other 🥰
Steven, First off, thank you so much for watching! Secondly, I am so sorry to hear this. We are hoping to share more bladder cancer stories to help other patients. Would you be willing to share your story? If so or if you have any questions - please reach out to community@thepatientstory.com
@@ThePatientStory sorry but not that good on the Internet, I would if I could, mostly because my experience like everyone else's is different, I could explain the pain I have had from my first of two resection's last November etc but unfortunately as I said I wouldn't know how to start and do it, sorry
Oh you ate so very right. YouHAVE TO ADVOCATE FOR YOURSELF!! In ANY AND ALL DISEASES PROCESSES! I had to do this for my husband when he developed rare cardiac symptoms I had to"argue" with umpteen specialists in multiple places before we finally got a diagnoses 10 years later at the MAYO clinic. You have to find the expert and keep pushing!!
Love what margo said about the "contract with cancer" sign this and get lost!!! Sadly that contract was voided meaning this disease can creep up even healthy people 🤬👿💔
Stephanie are you the daughter of Linus? He is a phenomenal gyn oncologist who trained at MD Anderson. I had the privilege to work with him at Westchester Medical Center in the 90’s.
I had a very heavy loss of blood during menopause drugs stopped it. Doctor suggested he operate to explore. I said thanks but no thanks. I'm perfectly fine now.
Hi Margo, I am very appreciative of your sharing your bladder cancer story. Hope you don't mind a question, on the radical cystectomy/ileal conduit part: Were there any complications from the surgery and the urinary diversion? I prefer the idea of Ileal Conduit urinary diversion option, except when many reports describe those serious complications, such as potential kidney failure, bowel blockage, etc. The way these complications are mentioned sounds like all patients might encounter them. I really hope these reports mention the complications only because they are required to, however unlikely they are. Thanks.
I chose the lower risk urostomy option. While I don't like the bag for aesthetic reasons, it hasn't stopped me from doing things I love. I went scuba diving earlier this month and had no issues.
I haven't had any complications to the urostomy. Of course, I don't love the bag, but I do love having my life back. Just went scuba diving earlier this month with no issues! 🤿
You are a smart, savvy woman. You should be a patient advocate and help others navigate. Probably a thankless job for little or no pay. I'd love to know more about how to get all your records. Seems whatever test or procedure you have, you're simply told the results will be forwarded to your doctor, and you never see the actual report. Anyway, thank you for sharing your wisdom and your journey. The very best to you and your family.
It seems to be as difficult in the US to get an initial diagnosis of cancer as it is here in the UK. The obvious doesn't occur to primary care doctors.
No one doctor can know everything, which is why it's a good idea to find the best specialist in the field. They have seen the most cases, so provide the deepest experience with our specific illnesses. I'm so grateful I was able to see Dr. Kamat at MD Anderson!
When my son was 6yrs old I noticed blood in the toilet bowl and when I pee as well and ignore it I had some poo check up and it come out there's nothing my son will be 37 soon.the bleeding did not come back and still worried after watching this video.
MARGO, did you ever end up having the first type of treatment for the 1st cancer that was discovered, seeing that you sought a second opinion and where it led you to the 2nd cancer?
No I didn't. It was BCG therapy and interestingly, my first doctor's office called to say, "We have bcg and you should come and get it because there's a worldwide shortage etc." I replied that I appreciated them calling me but I was getting the 2nd opinion the next week and would determine treatment regimen then. I had NO idea that the MD Anderson doctors were going to tell me I would be dead in 12 months if I had proceeded with that BCG treatment and done nothing else!
I was diagnosed in June of 2024. with bladder cancer. i dont know if it was early or not. but i ask the doctor what his feelings were. he said i have Stage 0 and to under one. the first urologist couldn’t see it with a cystoscope and said it was too tiny. so i had a million tests. all tested negative no masses. no tumors not even anything in the bladder. this week i had a Turbt operation i waited one month to see the specialist. and month to schedule the procedure. im finished with the initial operation. was pretty quick. and now waiting for my followup sept 5th , I’m my surgeon is correct and the pathology. matches the surgeons thoughts. he may want to do several other chemo washes to prevent this from coming back. i take it one day at at time. and i do what ever my doctors tell me to do. i wish you all the best of luck.
I cant watch this, I had a lump removed from right breast, on return to take the dressing off, there was a puckering in the left breast biopsied and yes first was hr2 second was hr3, chemotherapy, bilateral mastectomy, herseptin.. oral chemotherapy, phew thank god that's over, genetically I'm not predisposed, kept it short, stay strong and be kind to yourself 💓💞😘 still here.
Hi Margo, so sorry you needed to go through all this! Just curious if before your MRI did you have a KUB ultrasound (kidneys, ureters, bladder) or did they not do an ultrasound as the first step? Thanks!
As a lay person, I wonder why they don’t first remove the bladder? Then chemo, etc. Obviously there is an important reason it just seems like if it’s aggressive and rare you’d think getting it out of your body ASAP would be a good thing.
I had the same regimen for an agressive breast cancer…..first neoadjuvant chemo and after that surgery.It is done that way for the extreme agressive types of cancers, chemo is more for the case in that some cancer cells already travelled in some other parts of our body, or to shrink the tumor or to be able to check after if the chemo worked
@@IamParalegal The expert urologists oncologists look for organ preserving solutions first. But in my case, Plasmacytoid always comes back and it is always fatal, so they throw the kitchen sink at it. And I'm hear to live and tell about it:)
My husband had his bladder cancer over 15 +years ago, and at the time, it was confirmed that the cancer did not go through the wall, so once scraped inside, he was good to go. No need to remove it if they’ve scraped it all and hasn’t gone through the wall. So, no, don’t take out the bladder right off the bat. He quit smoking, and went for 6 month checkups for years and now goes on an annual basis. It has come back at least once, but again, scraped and he’s good. So far so good.
Hi I'm from the UK I've had blood in my urine since begining of July, its now end of September. Yes I've been to see my GP numerous times, blood tests, urine test, no UTI, GP asked for Urgent Ultra Sound but it got declined (no one told me) now have been referred.......18 week wait for an appointment. Symptons got worse GP did an Urgent Referral, phoned hospital and they haven't received it, can only see original referral from 4 weeks ago! Don't now what to do but the NHS don't seem to be bothered!
I'm going through a similar scenario as we speak. I began with micro proteins in my urine. My PCP and Oncologist (prev. breast cancer), said "don't worry about it your labs look good". But being an RN for >40 years, I did worry about it. I bought some dip sticks and began checking my own urine. After the first couple, traces of blood began showing up on the dip stick. I called and made an appointment with urology as I also tried to make a nephrology appointment. I was able to see the urologist first. Ordered a urine cytology and a CT urogram, which found my tumors (#2). Cystoscopy today to confirm tumor and will schedule for TURB asap. If I had listened to my docs, I'd be in trouble eventually. I did have frequency of urination, but was told I had overactive bladder and given medication. Patients need to be proactive and don't settle for being brushed off.
I did bleed post menopause, 1st no UTI -got Pelvic Ultrasound. Waiting for a Gyn/Urologist. She takes months to see. Question: Does it MATTER WHAT TYPE OF UROLOGIST?? help!
@@austintexaslivinghouses Back in 1998, my Organic Chemisrty text book had a highlighted page stating "Aspertain brakes down in the bladder and turns cancerous" yet it still was in drinks and food. So sorry.
I was diagnosed with stage 4 carcinoma of an Unknown Primary but two tumours seem to be responding in different ways. My daughter suggested that I may have 2 different cancers. I asked the doctors, and although they don't know the primary, they claim it's not 2 cancers. But how can they be sure?
Oh the irony of getting one cancer only to find out another kind is hiding out. Key takeaways: don’t dally, get second opinions, watch people like this who demonstrate resilience and self-advocacy.
Hair dye...that is very concerning that nobody reacts those chemicals...they directly go to the renal(kidneys) system and bladder and out of system but inside body causes colletarall damage..
I was urinating red wide - completely painless - but did pass some clots that felt weird - not painful. I drink a lot of red wine and a friend asked if I drank too much. It was surreal to say the least.
My dad was diagnosed with bladder cancer 2020 no history of cancer he did chemo and radiation and passed away in June of this year it was a vengeful cancer i pray people have better results
I'm so sorry for your loss, Gin-Gin. It's a terrible disease and we all do our do our best to fight it. Prayers for you and your family for healing and peace.
What was the biggest lesson you learned in your own cancer diagnosis? Leave us a comment below 👇
You must do what you feel is best for you. Don't be afraid to change doctors if there is something about them that you aren't happy about. You must advocate for yourself. Keep records on everything so you know what treatment you are getting.
I have read that bleaching our hair blonde can lead to bladder cancer but I still play around with my hair. I'm so sorry about your news. Wishing you all the best. I might stop messing about with my hair now.
Have good insurance
Just to listen to your body…if you feel that something is wrong, do not be afraid to switch doctors, until you are sure you have found the right one.And one more thing, i have learned from the cancer cell: if a cancer cell is fighting that hard to survive, we should do at least that much for our selves.
Can comment on the experience of someone very close to me who was basically in denial about the seriousness of seeing blood in urine. Luckily I saw it & immediately Dr. Google led me to request that an appointment be made with a Urologist. Surgery , tumor removal & on seeing a Urology Oncologist bladder removed. Thank God 4 years later and the patient is healthy & leads an active, productive &fulfilled life.
When my husband was diagnosed with stage four renal cell carcinoma six years ago, I annoyed the hell out of doctors because I asked so many questions. Being a recruiter in the pharmaceutical industry, and placing doctors in new in industry, I saw them more as candidates, and less as “gods”. I was used to negotiating their compensation packages, so they did not intimidate me. Thank God, because I demanded second opinions which ultimately I believe saved my husband’s life. 6 1/2 years later, he golfed 18 holes today. After the first meeting with the initial oncologist, they had given him a year. Sending you lots of positive energy and vibes, you got this! ❤
I was diagnosed 2 year's or so ago that I had RCC but that I didn't need to worry it's growing slowly ???? I asked why they think it's cancer I had cancer in 2014 in my breast her2+ metatisized anyway I got letter the other day asking me to come to hospital next year October I'm fuming a dunno what to think now but I did get the RCC on screen on my phone..I also had heart attack last year 2 day's before my daughter's birthday but hopefully this year we can spend time together ❤️ hope everything goes well for you Michelle I shall pray for you dear 🙏🏽
Thanks, Michelle! I DO got this and appreciate the love and support we receive from other patients who share their stories and encouragement, like you❤
@@austintexaslivinghouses I meant to reply with my personal channel:)
What a brave,& smart lady!
We al can learn from her!
Michelle, I am so happy that your husband had a good recovery. My young husband with stage 4 renal cell carcinoma did not make it. We were lucky, though in that the oncologist office we went to had three doctors. Each had close connections to a different nationally known hospital. I asked questions constantly and they were unbelievably patient.
I went for my first colonoscopy in 2021 and was diagnosed with colon cancer. As a mother of 4, the news was devastating. As a Christian, I have no doubt that God saved my life. A kept hearing a small whisper, to get tested. I had no symptoms, and was under the age of 50. This was a stage 1! My Drs were perplexed and kept asking what made me decide to get tested. My response, “I listened to that still small voice.”
I’m inspired by your story. Wishing you the best of health.
Thank you @PaulaTaffeAdams ! I'm SO glad you listened to that still small voice! Our instincts, intuition tell us what we need to know. Our choice is whether we listen or not. I hope you are recovering so you can be there for those precious children!
“Don’t accept no answers when you can get answers.” That is a wonderful advice.
Hello how are you doing?
Margo, my experience was identical to yours: no pain, no burning when I urinated. I bled massive and made an appointment with my PCP. When he saw my urine specimen, he immediately called a specialist who wanted to see me right then. That doctor waited for me as it was after office hours. After the exam, he told me that I had a tumor. I asked what that meant and I’ll never forget his response. “You have cancer.” That was on a Tuesday and I had the surgery on Thursday. I watched the procedure and saw the tumor. Luckily it had not invaded the bladder wall. I had it twice more and each time the tumor got smaller than the time before. For three years I had my bladder checked every six months, after that once a year for fifteen years.
Every time I see a new doctor, I get asked if I smoked. I had smoked for eight years but had quit cold-turkey fifteen years before. Every time the doc told me it didn’t matter how long ago I had quit and that smoking is the #1 factor in bladder cancer. I was very lucky. I know about two people who didn’t survive it. Unfortunately my luck ran out six weeks ago as after an MRI, it was discovered that I have renal cell carcinoma, found by accident as the MRI was unrelated to the cancer. We’ll see how it goes.
I’m very happy that you got through this devastating experience. I’ve made the decision that if worse comes to worse, I’m not going to go through chemo and radiation. Just keep me comfortable. I’m 80 years old and have lived to be much older than both parents and also two younger sisters. I’m ready to go. Hopefully I’ll beat this one too.
My prayers are with you, Diane. This was my mother’s story.
All the best to you.
Please take care. Bless you with all the strength, love and respect. Prayers. Thank you for sharing.
My prayers and thoughts are with you! I’m just starting with the diagnosis of blood in my urine! I’m in my early 70’s but have good thoughts and hope for as good as it can be! God bless you!
Hopefully it’s a UTI which is easily taken care of. If it turns out to be cancer, my best wishes for you. In my case the three surgeries were short and I drove myself home afterwards. The word cancer in itself is devastating but not nearly as much as even ten years ago. I know this will be difficult but try to keep a positive mindset. Best wishes, Diane
Glad this lady advocated for herself! The concerning part of most of these cancer stories is that the patients were mostly dismissed in the beginning!
We deserved to find the best doctors, who are top in their fields of expertise, to treat us:)
I too had two types of tumors in my bladder. High grade muscle invasive bladder cancer. Only symptoms chronic UTIs no visible blood. I was almost blown off by doctors but thank God a cystoscopy was done. Bladder, uterus, appendix and 22 lymph nodes removed 1/7/2019 after 5 rounds of MVAC.
I’m so glad you are here to tell your story. ❤sending my love to you
Hey, hope you’re doing good. Where (hospital) did you get treated?
@@kanikagupta2456 Thank you! A hospital in MN
Thank you Suez5468. Thank you for sharing yours and I'm sending you love and peace for continued wellness!
Hello, happy you are doing well *edit.. I read another comment of yours and saw all your complications and things you're dealing with after the fact * so sorry you had to go through all that!
When you say chronic UTIs.. do you mean actual diagnosed UTIs (by urine cultures that actually said you had bacteria) or do you mean symptoms of UTIs but there was never actually an infection?
I ask because everything out there says symptoms of UTI mimicks bladder cancer but doesn't specify if actually having diagnosed UTIs is a sign .. because the symptoms can be explained by the urine cultures being positive
@ Thank you. Yes it’s confirmed cultured UTIs. I have had one now for 20 months that every time I stop antibiotics I get so sick. Fevers, chills, terrible smelling pee.. I’m working on finding the cause.
When I started getting sick with Ovarian cancer, I had little to no symptoms, one of them was urinating too much. I talked with my primary doctor and it was not looked into. Also, I was so exhausted all the time. However, I was running my own daycare and working very long hours. That was just about it. I started to get sick the day before I went the E.R, but I knew the next day would be Friday and I just decided to suck it up. Six hours after being in the E.R., was the first time I heard cancer. I have learned to listen to my body. Rest when I am exhausted. Don't be too hard on myself. Also, to live in the moment. It is okay to be on depression and anxiety meds, it helps me live in the moment. Also, Ovarian cancer might take my life but not today.
Love your determination to seize the day, Donna! None of know how long we have on this blue planet, so enjoying the present is the best gift we can give ourselves!
I had 1 possible symptom of Fallopian Tube/Ovarian Cancer prior to being diagnosed with stage 3C in March 2016. I had right pelvic pain for several years. A couple of times throughout the years, I would see the gyn for the pain. I had a few CT scans which did not show anything. When the pain persisted and CT scans came out negative, I requested the tumor marker blood test and was always told no, your scans are good, insurance will not pay for the test. I responded well, I will pay. I was never given that opportunity to pay for this test on my own. I tried so hard to be my own advocate but when a dr(s) is not listening to you and they have already made their mind up about what is causing your pain, you feel helpless. If it wasn’t for me getting flu like symptoms in Feb 2016 and then several days later getting red spots all over my body, I would never have known anything was wrong with me. It was my primary dr who saw those spots and said I think you need a CT scan. Finally, the scan showed enlarged lymph nodes on my right pelvic area. I will never forget reading that report on my portal and the last few words were “patient should be referred to an oncologist”. That scan was the start of this nightmare called cancer.
@@susandaly59 I hope all is well with you now.🙏
@@susandaly591q as
You are so right Margo. We have to be our own advocates and never, ever care about hurting a doctor's feelings. Your life is more important than that. And one more thing everyone....remember Doctors are not Gods. Doctors work for you so as Margo said there are good doctors out there and bad doctors out there. Find the best because you know your own body better than anyone and never forget....the Doctors work for you. Fire the bad ones until you find the best. God Bless You Margo and thank you for making this video for all of us. Sending lots of love and prayers to you.
Thank you! I'm happy to accept your love and prayers:) And I send some right back to you.
5 specialists looked at my MRI scan and one suggested it be investigated for cancer. My GP refused stating it was only 1 doctor out of 5. I was diagnosed 10 months later with stage 4 carcinoma. I wish I had listened to that one specialist.
@@LisaMaryification My thoughts and prayers are with you.
@@LisaMaryification I’m so sorry to heard your story 😢
I have been diagnosed with aggressive stage 1 T1 bladder cancer. My urologist encouraged me to have a 2nd opinion. I now have appt with another doctor to be sure my diagnosis is confirmed. Very useful video. Thank you for sharing your experience. Very happy you beat this cancer. I'm waiting for my appointment & hopefully good results
Hello what were your symptoms if you don't mind sharing?
Hey how are you doing today?
Biggest lesson learned: Don't wait! No cancer in my family either. Last January, I got a pain in my lower right quadrant while out to dinner with a friend. I ended up leaving, going home and laying with a hot water bottle thinking it was gas. Went to the ER, and I was blessed to have a Dr that ordered ultrasound and CT scan right there. He found a "complex cystic mass" on my right ovary. He ordered an MRI next day and a consult with a women's specialty gyno hospital. My pain went away the next day, and in 8 days I had a consult with a surgeon who specializes in wrns gyno cancers. She set me up for surgery. They discovered I had Stage 2 cancer on the right ovary, and some spread to the left fallopian tube. I got a complete hysterectomy and 6 sessions of chemo that ended mid June. My latest pelvic exam and CT scan showed no signs of anything. However, I will have to follow up for the next 5 years.
Wish you well. God bless. ❤🙏🏼
Mary, I'm so glad you didn't wait!
"Wait and See" is not smart with health issues!
I am curious. Had you been vaccinated or not ?
That's exactly what happened to me except my doctor only ordered an MRI then said to take more exlax. I knew something was wrong and 10 months later I ended up in the ER where they diagnosed me with stage 4 cancer. If my doctor had listened to me, perhaps I would have been as lucky as you.
Love this lady, shes so assertive & articulate!
This was one of the best interviews I've watched. The interview questions were excellent, Margo W. has provided so much information. Thank you both.
Incredible interview! She checked out and hit on every critical step along the way and had the good fortune of working in the life insurance industry, knowing how to search and what to google. Really appreciate the fact that she figured out how to learn what she didn’t even know to ask, her urologist who didn’t refer her to a urologist/oncologist and that he didn’t have the equipment to do what was needed and, in fact, how important to have access to major health centers who do. I love that she didn’t need to demean or vent anger to advocate for herself. Really admire how she approached everything and, quite literally, saved her own life by having the courage and tenacity to learn.
Thank you, Buela! Amazing what we can do when our life is on the line:)
Thank you for sharing. My dad was diagnosed with bladder cancer. He had no pain. His symptom was frequent urination at first. The blood in the urine came after. The cancer wasn't invasive. He lived for five years after. He was elderly so the cancer couldn't be removed. There is no cancer in my family.
Sorry for your loss. Currently, I am going through the same cancer. Could you please share more details like what diet your dad followed? It would be great help.
I was diagnosed with Bladder Cancer at the age of 33 (Low Grade Papillary Carcinoma, No invasion to smooth muscles and other parts). I underwent TURBT tumor was removed. No chemotherapy has done. But i do have a 3 months ultrasound for 1 year and every 6 months yearly then after. Thanks God Everything went to normal. God is good. Being diagnosed with cancer is devastating. Now that I am cancer-free, I hope everything will return to normal. I aspire for a life without any more remissions.
Hey what’s TURBT?
@@kanikagupta2456 Transurethral Resection of the Bladder Tumor.
A TURBT is when they cut parts of the tumor so then they give you chemo and hope to dissolve the tumor completely.@@kanikagupta2456
Congratulations on being cancer free @Lordbyron0850 !
Were you tired all the time cold and hot??
Your self advocacy is inspiring! Thank you for sharing your story. I have learned a lot!
Thank you!
Stephanie you are a good interviewer! And Margo is a good patient/interviewee. Good job, ladies. You will help many with this video.
Thank you @kaylong ! We hope to help others by sharing our stories:)
Very articulate, loved your positivity and steps you took to handle this cancer. I hope you continue well.
Thank you Dinah!
Many Marine Vets. have similar bladder cancer from Camp Lejeune contaminated water. Early diagnosis is key to extended life, even though long term prognosis cannot be guaranteed. Thank you for bringing to light how important it is not to sit back and wait.
I was born at camp Lejeune, my father was stationed there, my mom carried me and gave birth to me there I was saturated in the water,. I have had bladder issues my entire life now I'm peeing straight blood and passing blood clots, waiting to see the urologist now, I have a sneaky suspicion it's bladder cancer, they found a lesion on the wall of my bladder 6 years ago during routine . I'm pretty nervous
I am so glad you advocated for yourself. BCG is in short supply too, it has been for over a year. BCG is usually mixed with heparin and instilled into the bladder. Thank you for sharing your story
Thank you for your comments and support, P slay! I experienced the BCG shortage in 2020, since that is the typically recommended treatment for Stage 1 bladder cancer. Thing was, my doctor missed a 2nd form of cancer that would not have responded to BCG. Had I gone that route, I would not be here today. Which is why I'm such a big advocate for getting a 2nd and even 3rd opinion!
@@austintexaslivinghouses It is very scary that there is so many missed diagnosis and I am hoping you are doing well in 2023. I think physicians need to slow it down and really listen to the patient, we know our body better than anyone including a physician. I am so glad you did not go into " watchful waiting". I really like your quote, "we don't want to hurt our doctors feelings" this is your life. Continue to tell you story, I am sure you saved lives here. ❤❤❤
My dad was 89 & a life long smoker when he was diagnosed with bladder cancer. No symptoms whatsoever until blood showed in his urine. He blamed the red in the cherry pie he had eaten The day before. Seriously? When it stopped, his theory was validated… until it came back. First diagnosis- bladder infection. Later, a brief scan revealed 2 suspicious polyps. A further scan showed hundreds of polyps like stalactites & stalagmites all over the interior of his bladder. The urologist told him to stop smoking & undergo a chemo infusion that could be done in his office. Dad refused both. Fir the next 5 years he underwent numerous bladder wall scrapings that continued to thin the walls. He suffered from anemia, fainting, transfusions & dizziness. He was too old for bladder replacement surgery & too stubborn to quit smoking & have chemo. He died at 94 in a nursing home he hated. His urine looked like cherry koolaid & his tongue was full of thrush due to prolonged antibiotics. His sisters lived into their 100s, neither one a smoker. FIGHT!
That must have been difficult for you. Thank you for sharing.
That was a tough fight for your father at such old age. Since I am dealing with a similar bad situation could you please share any particular diet that you followed which helped you? Or anything which helped during the cancer journey.
@@anon-w9lYou are blessed to live to 89 ,I only wish I could live that long.🙏
Thank you for sharing your fight against cancer. Sharing information like yours about cancer journey is so important to so many who at some point will develop cancer. Our environment and food supply is so cancer producing🥶
Such an articulate, intelligent, and courageous woman. I really appreciate her interview.
Thank you:) I'm glad you enjoyed it.
Such a positive person with a great outlook, which makes a difference for a good outcome.
It’s nice to believe that, but the most important variables that determine whether someone has a good outcome with cancer are the medical variables such as type of cancer, stage at diagnosis, and effectiveness of available treatment options. What you are suggesting is the problem with the battle metaphor with respect to cancer. It implies that those who die of cancer were not virtuous or strong enough to beat their cancers, which is empathically not true.
We certainly increase our chances of survival when we take good care of our emotions, as well as our bodies. Gaining and keeping a positive attitude while fighting a life-threatening disease is a challenge. Something really valuable I learned from my journey is to be kind with myself when I fall short of staying positive. Some days, I just didn't have it. Felt like giving up. And that's not me usually! Gentle, self compassion for all the experiences helped reduce my suffering.
Wow! 70%. Thank you so much for this information. I had no idea. Will keep that in mind for sure 💜
Discarding this offer to share
What a great and funny storyteller Margo is ...
Thank you! That means so much to me, because I enjoy telling stories and in some ways, wish I didn't have this particular one. But I do and I felt compelled to share it with the hope that it will help others facing difficult challenges. I also wrote a book about what I learned and you can check that out, if you'd like: amzn.to/3aPDs3t
Absolutely right about not waiting. My husband would have died immediately if we hadn't pushed for a diagnosis. Instead he lived 5 yrs. Even at that, it was a battle. And the urologist definitely should have directed her to the oncologist-urologist. I am a lawyer, my husband's sister was a board member of a prominent hospital where he went. I was appalled at the mistakes, sheer incompetence, and carelessness displayed by the surgeon (now under legal investigation for drug use) and the hospital. Never go into this type of illness without someone with you AT ALL TIMES POSSIBLE.
When we are facing health challenges, we definitely need support from people we love and can count on, even if that's by way of a phone, like I had to do during quarantine!
Don’t accept no answers, I AGREE! I am going through that now personally. Doctors don’t agree with what is wrong with me. Very disheartening! But I started feeling, don’t want to bug or annoy any doctor. For example a few years ago, I pushed getting a test sooner than usual, doctor finally approved it, the test led to surgery that the doctor said, saved my life!
Good for you, Lorraine!
Dr keeps checking with my bladder issues. Second time doing cancer work up. It’s scary. He didn’t find anything last time but testing is still scary. My neighbor died from bladder cancer last Christmas.
Did you back share the information with the doctors you saw, so that they’d be better informed for the next patients? Thank you so much for sharing your journey and perspectives. I pray you remain cancer free. ✝️
I did share that with them. Thank you for your support and prayers!
Absolutely, very important to be your own advocate! At the end of the day it is your life!
You are so right!
Lost my family to cancer, dad and three sisters, mom succumbed to another illness though had been treated for cancer.
I have been diagnosed twice with cancer and these words echo in my ear as I write this note, John, you have cancer. Not necessarily the worst three words to hear when I think this over,
Your Dad Died! I thought these may be the worst three words I would hear for a while though was wrong, indeed. I heard these words of a loved ones once more when my sister Linda died the following year of cancer and soon following her, Wendy passed away f cancer. I had lost my youngest sister Nila to cancer in 1970`s, she had a newborn child a few months before her demise in her early twenty`s.
A few swift years after my mom's death I was diagnosed with cancer, I remember hearing these words, YOU HAVE CANCER though I was pleased with this, and I shall tell you why.
My mother, Norma Jean outlived four of her beautiful children and wonderfully strong faithed husband of 45 years. She did not outlive all her children of which I am grateful to have her not leave with this thought. I as say, a few very short years pass when I hear these three words, you have cancer.
I went through Chomo and also radiation treatments were used on a tumor in my head/neck in 2014. I am a cancer survivor and I have a story to tell!
I am the son of Wndl n Jn
Wow @jonofwndlnjn! that's a lot to deal with. Wishing you all the best for continued good health from here on out.
ml
It sounds like the cause might have been environmental. Perhaps your childhood home? Buildings built before 1980 have asbestos.
There was one street in my hometown where almost every family had at least one member who developed cancer. It all started after an industrial spill that had killed all the fish in surrounding waterways.
In most cases Cancer sneaks up on you without symptoms until you have had it for a while. Best of luck to you. I’m glad your doctors were frank with you as hard as it had to be to hear it. ❤️🙏
🤗
She is a very articulate, informative and intelligent woman.
I appreciate those comments, BDMBPM:)
Super lady, what a spirit to match her acumen. Blessings and Thanks for your insights, courage and clarity. I will be thinking of you on International Women's Day for your leadership and grace.
thank you!
This woman is absolutely beautiful. I bet many woman would kill to look like her at her age.
You are so kind to say that, Chad! Let's just say ring lights are very flattering:)
I was also diagnosed with 2 cancers mine were totally unrelated. CLL and gallbladder cancer, exactly a week apart. Fortunately both were caught very early, so I’m good.
Hai did you get treatment or natural
@@valarymudala8955 gallbladder removal and liver resection. Precautionary oral chemo for 6 months. No treatment for CLL until I’m symptomatic.
@@betsydavis4062 Wishing you continued good health!
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@@betsydavis4062delete
Oh my!!! So sorry you have had to go through all this! My husband has bladder cancer, in remission, and had his prostate removed due to stage three prostate cancer. He has checkups on both every year, started out 3 months, then 6 months, now yearly. Cystoscopes are very uncomfortable according to him! He has one bladder cancer removed, then again a year later, third year a scare, during surgery, found out it was not cancer…. Gotta take care of YOURSELF! Continue with physicals, bloodwork etc!
AMEN to all of that, Lorraine!
I have had bladder cancer 2x. The second time I did immunotherapy. Been ok for 3 years. Dr said we have to keep watching. I get my check every 5 years of my colon. I get pretty cancerous polyps. Thank goodness we catch them in time so we just keep watching.
Early detection is the best weapon for treatment! I had my first colonoscopy recently and got the all clear - see you in 10 years report:)
Always ask for a second opinion. My dad had stage 4 esophageal cancer and was misdiagnosed stage 2 in San Antonio. Needless to say we went to MD Anderson and they were able to diagnose him stage 4 and get the treatment plan in one week.
Are there going to be follow on episodes to Margo’s story? She is so informative and such an inspiration !
Hi Julie! Yes, we will release Margo’s second segment Wednesday November 2. Let us know if there are other topics that would be helpful to cover in the future. Thanks for watching ❤️
@@ThePatientStory thank you
Never feel bad about taking control of your own or a loved ones medical treatment. My husband had been diagnosed with Stage 3 Pancreatic Cancer. It's a very long journey of major malpractice, but in a nutshell, if I hadn't taken control and put my husband in the car and driven 3 hours to OHSU in Portland, he wouldn't be alive today. Due to their quick action and diagnostic skills, they were able to diagnose what was causing the life threatening complications (that were actually caused by a surgeon at St. Charles, they took action and today he is 3 years cancer free! When I had asked to have my husband transferred to OHSU, I was told they wouldn't be able to do anything more than what was currently being done. If I had listened to them, I would be a widow right now. You MUST take charge of your medical care!!!!
Absolutely! I'm so glad you hubby is 3 years cancer free!
I had no symptoms either until the tumors literally started coming out over my neck rib cage etc. I had also acquired blood clots again in my legs. My diagnosis was non Hodgkin's Lymphoma Grand B Cell. I was 57 as well at the time it was diagnosed. It was the early days of covid so absolutely no visitors at the hospital. Nothing like poison dripping into you for 5days straight at a time to truly let you know what your made of!
#TRUTH
It scares me that mri didn’t pick it up. I’ve had intermittent left bladder pain since Feb. Had cystoscopy, laparoscopy, mri, ct, ultrasounds- not showing anything.
Our bodies are so mysterious. Cancer cells and small tumors don't always show up, but the cystoscopy did, thankfully. Good luck finding the issue and treatment you need, Tracy.
I have learned life is very fragile, should not be taken seriously,
Just live it to full as tomorow is not promised!
There is truly no gift like the present.
This woman is so inspiring and just watching her video makes me feel like she has a great personality❤ I wish her all the best
and bravo for sharing your story for all of us out here - well done
I just started and omg, I can't even begin to imagine 💔 this news.
I feel bad about this, how’re you doing?
OMG what a story, many twists and turns, and lessons on empowerment. It is so hard to do all the research she did, and sadly many people don't have good insurance. There isn't a good way to find doctors other than who is signed up with your insurance. That's just an alphabetical list of names. Websites that list opinions and ratings is highly subjective, and most have few responses. Many of those sites have been sued by doctors for negative reviews, so it's very hard to know who these people are.
Thank you! I have found this one of the most helpful testimonies. I have just had a cystoscope and a tumour was present I am booked for surgery Nov 22. To date I feel very uninformed and Dr,s are so over worked in Canada that my Family Dr. was annoyed that I call to discuss. At the time of my cystoscope the Urologist had no time for my questions. Very hard to not feel overwhelmed. So thank you for your time and sharing your experience.
Trish, thank you for watching! We are so glad to hear this story was helpful. Please let us know if there are topics we should cover that would be helpful.
Thank you Trish. I hope you get the care you need.🙏
Wasthe cyctsoscopy hurt?
How are you doing now?
She’s great! I love her.
Thank you for watching!
Thank you Cathy!
My cancer story… whew 😥 … I had a kidney stone which was causing a lot of pain so I went to the ER … they weren’t sure if it was a kidney stone so the did a ultrasound to see if it was an ovary problem . The first thing that was strange was when while doing the ultrasound she asked me if I had had a hysterectomy because she couldn’t find my uterus. Well the results were that I needed a biopsy. Went to the gyno and he said well you have no symptoms so let’s wait till you do. Two years later I found a new Dr and she said why haven’t you had a biopsy and I told her what my retired Dr said. She said well we are not waiting…so I had another ultrasound and it was worse, my uterus was smaller and thicker. So I had a biopsy and yes it was cancer. So I got an appointment with the U of M and went there lucky I got in quickly. Within 2 weeks I had a hysterectomy and all looked good … he said one and done. Until the tumor board saw a more invasive tumor Papillary serous. And I would have to have 6 chemo treatments. Lucky it was new and hadn’t spread. It’s been 5 years and I am fine. I had not precursors at all and I had no symptoms at all. Thank you kidney stone or I wouldn’t have known.
Isn't it surprising how often we hear of some other health issue causing us to discover a more sinister disease like cancer. My 2nd bladder cancer, Plasmacytoid, is asymptomatic, disguises itself to convince the body its' cells are just regular bladder cancer cells. Nothing to see here!
What an awesome lady you are! Thank you for sharing your story! Blessings to you. I have a small story. Cancer came knocking in our family. My beautiful sister has metastasized breast cancer. She was a model of good health. Took care of herself wonderfully, expertly, always researching to attain the optimum health - no toxins, no bad foods, great nutrition, worked out. She was very careful. The unfairness of cancer is hard for me to handle.
Cancer is just $*&@. While I understand that life isn't fair, I'd be lying if I didn't admit I am still bothered by the unfairness! Sending support and hugs to you and your sister.
@@austintexaslivinghouses Thank you! ❤ I wish a lot of health to you!
Best of Life wishes for your Margo. ❤❤❤❤❤❤
June 2022, I was in the bathroom ready to go to work. Going to the toilet I realised that as I was urinating I noticed a real dark colour like coca cola. Funny how it, was I'd thought am I dying. Waited a month to see if things would clear up. But then alarm bells rang, went to see the G.P. They took a urine sample and found blood present. I was told it was Hematuria. From surgery to biopsy I was told it was stage 2 bladder cancer. Broke down but the doctor told me you're very lucky we've caught it in time. Had 6 courses of BCG in the bladder. Had a sample taken after the course of BCG. I eventually got the good news that I was cancer free. But still gonna be having treatment to make sure the demons stay at bay.
I lost my brother after a fight. It just came back everywhere 😢 . I am going to follow you and of course I wish you the best. I am a fighter so I push. I have basal cell carcinoma but of course its quite treatable the biggest problem with me is I have Neuromuscular Scoliosis ++. Surgery is very soon.
I had an UTI and let my PC treat me maybe a mistake.
Good God take care I sending love ❤️ 🤗
Thank you and I hope all of your treatment and surgery go well:)
Did you have the Safe and Effective?? So many health problems and worse, since 2021. I really wish you ❤ and regaining of your natural immunity against cancer and other illnesses!
I really appreciate this post!
I am so glad:)
Love your arrangement/contract with cancer, I made the same deal. Here we are.
Here we are. I should have gotten that signature! LOL!
I was treated for a uti for weeks. I had pain in my bladder and right side. Prescribed antibiotics. I then went into retention had to have a catheter for a week then I did isc
four weeks. Got app for u/s and. At the u/s. App Tech said kidneys were fine but wouldn’t say anything about my bladder but there were abnormal cells so wait for flexi. I new then it was bad news. Turns out to be bladder cancer. I’ve had it party removed waiting to hear what’s next 😔 up date. I have to have my bladder removed asap. Then I will live my life like no other 🥰
I hope all is well with you now Pat!
Same with my mom, was treated for a uti, a few times and then finally it got worse and she was diagnosed with kidney cancer, died within 4 months.
Excellent video. Thank you
I'm glad you found it helpful!
God love ❤ you girl, just waiting for my big operation, two cancers in my bladder as well, bladder and prostrate removal surgery,
Steven,
First off, thank you so much for watching! Secondly, I am so sorry to hear this. We are hoping to share more bladder cancer stories to help other patients. Would you be willing to share your story? If so or if you have any questions - please reach out to community@thepatientstory.com
@@ThePatientStory sorry but not that good on the Internet, I would if I could, mostly because my experience like everyone else's is different, I could explain the pain I have had from my first of two resection's last November etc but unfortunately as I said I wouldn't know how to start and do it, sorry
Thank you Steven. Sending you prayers for a smooth surgery and quick recovery. Who needs a bladder? It's so last year:)
@@austintexaslivinghouses 😁 thankyou, sure if we didn't have a laugh what's the point take care
@@majorwhite51
Excellent video. God bless you!❤️✝️👍💐
Oh you ate so very right. YouHAVE TO ADVOCATE FOR YOURSELF!! In ANY AND ALL DISEASES PROCESSES! I had to do this for my husband when he developed rare cardiac symptoms
I had to"argue" with umpteen specialists in multiple places before we finally got a diagnoses 10 years later at the MAYO clinic. You have to find the expert and keep pushing!!
We DO have to keep pushing, advocating, staying focused on self care!
Love what margo said about the "contract with cancer" sign this and get lost!!! Sadly that contract was voided meaning this disease can creep up even healthy people 🤬👿💔
Laughing is so much more pleasant than crying:)
Stephanie are you the daughter of Linus? He is a phenomenal gyn oncologist who trained at MD Anderson. I had the privilege to work with him at Westchester Medical Center in the 90’s.
I had a very heavy loss of blood during menopause drugs stopped it. Doctor suggested he operate to explore. I said thanks but no thanks. I'm perfectly fine now.
Diane, I'm so glad to hear that you're fine!
Hi Margo, I am very appreciative of your sharing your bladder cancer story.
Hope you don't mind a question, on the radical cystectomy/ileal conduit part: Were there any complications from the surgery and the urinary diversion? I prefer the idea of Ileal Conduit urinary diversion option, except when many reports describe those serious complications, such as potential kidney failure, bowel blockage, etc. The way these complications are mentioned sounds like all patients might encounter them.
I really hope these reports mention the complications only because they are required to, however unlikely they are.
Thanks.
I chose the lower risk urostomy option. While I don't like the bag for aesthetic reasons, it hasn't stopped me from doing things I love. I went scuba diving earlier this month and had no issues.
I haven't had any complications to the urostomy. Of course, I don't love the bag, but I do love having my life back. Just went scuba diving earlier this month with no issues! 🤿
@@thriversurvivor That’s good to know, at least one patient does not have these intolerable complications. Thanks.
You are a smart, savvy woman. You should be a patient advocate and help others navigate. Probably a thankless job for little or no pay. I'd love to know more about how to get all your records. Seems whatever test or procedure you have, you're simply told the results will be forwarded to your doctor, and you never see the actual report. Anyway, thank you for sharing your wisdom and your journey. The very best to you and your family.
What a powerful story!
Thank you, Andrew.
It seems to be as difficult in the US to get an initial diagnosis of cancer as it is here in the UK. The obvious doesn't occur to primary care doctors.
No one doctor can know everything, which is why it's a good idea to find the best specialist in the field. They have seen the most cases, so provide the deepest experience with our specific illnesses. I'm so grateful I was able to see Dr. Kamat at MD Anderson!
OMG thank you soooo much 4 this!
You're welcome, Ceci:)
Love approach taken
Although I don't have cancer or know anyone with cancer I find these stories soooo interesting. I never knew the bladder could be taken out : O
When my son was 6yrs old I noticed blood in the toilet bowl and when I pee as well and ignore it I had some poo check up and it come out there's nothing my son will be 37 soon.the bleeding did not come back and still worried after watching this video.
Thank you for sharing your story.
God bless u and thanks for sharing !
I appreciate that and your welcome
I'm reading from 🇬🇭. Hope u doing well now!
@@reginaopoku2203 I'm thrilled to report I am doing great!
@@austintexaslivinghouses wonderful news my dear ! Wish u all the best in life dear !
Thanyou for sharing your story praying for you beautiful stay strong 💜
Thank you I’m one that doesn’t push but I will now 🤩🤩🤩🤩🤩💖💖💖💖
Yes! Push! I'm a people pleaser, but when our lives are on the line, get outta my way!
MARGO, did you ever end up having the first type of treatment for the 1st cancer that was discovered, seeing that you sought a second opinion and where it led you to the 2nd cancer?
No I didn't. It was BCG therapy and interestingly, my first doctor's office called to say, "We have bcg and you should come and get it because there's a worldwide shortage etc." I replied that I appreciated them calling me but I was getting the 2nd opinion the next week and would determine treatment regimen then. I had NO idea that the MD Anderson doctors were going to tell me I would be dead in 12 months if I had proceeded with that BCG treatment and done nothing else!
I was diagnosed in June of 2024. with bladder cancer. i dont know if it was early or not. but i ask the doctor what his feelings were. he said i have Stage 0 and to under one. the first urologist couldn’t see it with a cystoscope and said it was too tiny. so i had a million tests. all tested negative no masses. no tumors not even anything in the bladder. this week i had a Turbt operation i waited one month to see the specialist. and month to schedule the procedure. im finished with the initial operation. was pretty quick. and now waiting for my followup sept 5th , I’m my surgeon is correct and the pathology. matches the surgeons thoughts. he may want to do several other chemo washes to prevent this from coming back. i take it one day at at time. and i do what ever my doctors tell me to do. i wish you all the best of luck.
Such a strong woman
I haven't met anyone yet, who sets out to be as strong as we become to overcome some of the outrageously difficult challenges that come our way:)
I cant watch this, I had a lump removed from right breast, on return to take the dressing off, there was a puckering in the left breast biopsied and yes first was hr2 second was hr3, chemotherapy, bilateral mastectomy, herseptin.. oral chemotherapy, phew thank god that's over, genetically I'm not predisposed, kept it short, stay strong and be kind to yourself 💓💞😘 still here.
Thank you so much. This is so so very helpful.
I'm so glad for any help that sharing my story provides
Yes you know your body you know when something wrong
It's smart of us to trust our instincts!
Hello Danna, how are you doing?
Hi Margo, so sorry you needed to go through all this!
Just curious if before your MRI did you have a KUB ultrasound (kidneys, ureters, bladder) or did they not do an ultrasound as the first step?
Thanks!
As a lay person, I wonder why they don’t first remove the bladder? Then chemo, etc. Obviously there is an important reason it just seems like if it’s aggressive and rare you’d think getting it out of your body ASAP would be a good thing.
Is removal the best therapy?
I had the same regimen for an agressive breast cancer…..first neoadjuvant chemo and after that surgery.It is done that way for the extreme agressive types of cancers, chemo is more for the case in that some cancer cells already travelled in some other parts of our body, or to shrink the tumor or to be able to check after if the chemo worked
@@IamParalegal The expert urologists oncologists look for organ preserving solutions first. But in my case, Plasmacytoid always comes back and it is always fatal, so they throw the kitchen sink at it. And I'm hear to live and tell about it:)
@@austintexaslivinghouses Happy for your success in battling the disease. ❤️✝️
My husband had his bladder cancer over 15 +years ago, and at the time, it was confirmed that the cancer did not go through the wall, so once scraped inside, he was good to go. No need to remove it if they’ve scraped it all and hasn’t gone through the wall. So, no, don’t take out the bladder right off the bat. He quit smoking, and went for 6 month checkups for years and now goes on an annual basis. It has come back at least once, but again, scraped and he’s good. So far so good.
Hi I'm from the UK I've had blood in my urine since begining of July, its now end of September.
Yes I've been to see my GP numerous times, blood tests, urine test, no UTI, GP asked for Urgent Ultra Sound but it got declined (no one told me) now have been referred.......18 week wait for an appointment.
Symptons got worse GP did an Urgent Referral, phoned hospital and they haven't received it, can only see original referral from 4 weeks ago! Don't now what to do but the NHS don't seem to be bothered!
I'm going through a similar scenario as we speak. I began with micro proteins in my urine. My PCP and Oncologist (prev. breast cancer), said "don't worry about it your labs look good". But being an RN for >40 years, I did worry about it. I bought some dip sticks and began checking my own urine. After the first couple, traces of blood began showing up on the dip stick. I called and made an appointment with urology as I also tried to make a nephrology appointment. I was able to see the urologist first. Ordered a urine cytology and a CT urogram, which found my tumors (#2). Cystoscopy today to confirm tumor and will schedule for TURB asap. If I had listened to my docs, I'd be in trouble eventually. I did have frequency of urination, but was told I had overactive bladder and given medication. Patients need to be proactive and don't settle for being brushed off.
I did bleed post menopause, 1st no UTI -got Pelvic Ultrasound. Waiting for a Gyn/Urologist. She takes months to see. Question: Does it MATTER WHAT TYPE OF UROLOGIST?? help!
I'm not a doctor, but as a patient, I recommend getting 2 or even 3 opinions from the specialists.
Did you ever use a sugar substitute in your diet?
once upon a time, but I gave up all of those a looooong time ago. Gave up diet sodas etc. decades ago.
@@austintexaslivinghouses Back in 1998, my Organic Chemisrty text book had a highlighted page stating "Aspertain brakes down in the bladder and turns cancerous" yet it still was in drinks and food. So sorry.
I was diagnosed with stage 4 carcinoma of an Unknown Primary but two tumours seem to be responding in different ways. My daughter suggested that I may have 2 different cancers. I asked the doctors, and although they don't know the primary, they claim it's not 2 cancers. But how can they be sure?
How are you doing now?
Yes on 2nd opinions
Oh the irony of getting one cancer only to find out another kind is hiding out. Key takeaways: don’t dally, get second opinions, watch people like this who demonstrate resilience and self-advocacy.
Great take away lessons!
I have 2 types of Leukemia. The 2nd one is bad and rare. Bless you.
How are you doing now?
So, what is her outcome?
Hair dye...that is very concerning that nobody reacts those chemicals...they directly go to the renal(kidneys) system and bladder and out of system but inside body causes colletarall damage..
Really??
Good point! Same with golf course chemicals.
I was urinating red wide - completely painless - but did pass some clots that felt weird - not painful. I drink a lot of red wine and a friend asked if I drank too much. It was surreal to say the least.
My dad was diagnosed with bladder cancer 2020 no history of cancer he did chemo and radiation and passed away in June of this year it was a vengeful cancer i pray people have better results
I'm so sorry for your loss, Gin-Gin. It's a terrible disease and we all do our do our best to fight it. Prayers for you and your family for healing and peace.
@@thriversurvivor thank you and bless you