Ovarian Cancer Patient | Sara's Story: How I Got Diagnosed & Treatment Decisions (Video 1/3)
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- Опубліковано 21 сер 2024
- Sara was diagnosed with stage 3A clear cell, high grade ovarian cancer at just 34 years old. In this in-depth conversation with www.ThePatientStory.com founder, Stephanie, she shares everything from diagnosis through navigating life after the diagnosis in these three videos (time codes to come):
Video 1: First Symptoms & Tests/Appointments
Video 2: Treatment & Procedures (Surgery, Chemo, PARP Inhibitors)
Video 3: Navigating Life with Cancer (Self-advocacy, finding a cancer community, importance of caregivers, managing "scanxiety," dealing with loss of fertility, survivorship)
VIDEO TIME CODES:
(1:56)1st symptoms
(4:43) 1st treatment decisions
(7:49) Admitted to hospital, self-advocacy
(11:38) Importance of being an informed patient
(14:46) Breaking the news to loved ones
(17:55) Approach with getting second opinion
FULL STORY AND TRANSCRIPT:
www.thepatient...
Sara…your story is so similar to mine. I was diagnosed with clear cell ovarian cancer…stage 1A. My IUD literally saved my life. I was 46 and started having weird periods. During an exceptionally heavy one, my IUD fell out. I decided to have another one placed so had an ultrasound first. I was told I had a cyst. Thank God my OB-Gyn tested my CA-125. From there it was complete hysterectomy and 6 rounds of chemo. It’s been nearly 9 years and I am here because my doc took me seriously and worked fast. Women MUST be their own advocate and insist their concerns need addressed. Thank you for sharing your story!
Jennifer, thank you for sharing your story as well! So glad to hear you got the care you needed and deserved ❤️ . -Stephanie
Hi. Jennifer , my wife also got the clear cell ovarian but she was in 1C , her doctors already made the full surgery and took all ovarian and related area and with 6 rounds of chemo within 1.5 months after surgery , now it already been 6 months , but me and my wife is worried about the relapse as everyone keep say the clear cell is dangerous than other type. she is same age of you (46 years) and I wish I would share some hope to her. so if you have some recommendation , please kindly let me know , Thank you so much
@@richyneung Hello! I’m sorry to hear about your wife’s diagnosis and I truly understand. The good news is that her cancer was caught before it spread to other parts of her body. Yes clear-cell is more aggressive but that doesn’t necessarily mean it will relapse. She will need to be monitored by her doctors closely but ovarian cancer in stage 1 is curable. I had a mentor when I was first diagnosed who was stage 1C clear-cell and she has gone on to live a great life. If your wife ever wants to talk, reply to this and I will send you my email. Take good care and many blessings!
I have just had a CA-125 and the result is 85 which is abnormal. They say it could be something else and not ovarian cancer but it’s worrying. I have to go for an ultrasound.
@@helenalovelock1030 Yes CA 125 is not the “be-all end-all”… I was told that by my gynecologic oncologist. It is simply a tool they use and it could be elevated for other reasons. I know it’s difficult, but try not to get too worried about it. If you ever need to chat, feel free to reach out on UA-cam and I will give you my email! Wishing you the best!
I lost my freind Lynne to O.C. 1 year after her diagnoses. Thankyou Sara for sharing your story. Hoping you are doing well now! I'm fighting stage 3 cervical cancer that was diagnosed in September 2021, ended up being packed, and catheterized for 2 months and staying in the hospital all that time, and took radiation, chemo, from October to December, and that was supposedly killed in 2021 after chemo, radiation, and brachytherapy for 3 days. In April of this year l found out it came back in 2 lymph nodes in the left side of my neck. Went through a PET scan and found out l have to try and fight it with chemo. Thank God for my daughter and grandbabies they are my Angels! If it weren't for them, l'd wouldn't be so positive! Prayers going up for you Sara. 🙏🫶
I don’t know how people get up on UA-cam and tell their story, but I’m grateful for their bravery. I guess we all have to go through something sometime.
Hope you’re doing well, Sara. ♥️
Im glad they let you see your paper work in time. Often doctors treat individuals poorly when they ask no matter how nice the patient is…
Wow her being so strong and detailed, and of course some of it comes from be in the medical field. Her way is very inspiring and I’m glad I came across this…
Tashema, so glad to hear Sara's story helped you. -Stephanie
I absolutely get that need to be in control of something. In the UK, it's a fight to get information, which is awful. I felt that my cancer was something I had no control over, so I needed to know all the tests, ops, procedures so I could understand and have faith in the why. I don't get how the nursing and medical staff couldn't grasp that and that made me lose faith in them. I hope your journey goes as well as it can and that you find your way of coping with whatever happens. It's a toughie, for sure. God bless x
Sara, your words and strength moved me. You were completely open and descriptive. I was moved to tears. To hold on to even the smallest amount of control was empowering. Sending my love and prayers to you as well as the lovely host. ❤️❤️🙏🙏❤️
Thank you so much for such amazingly kind words! Sara is such an incredible person and we are so grateful she decided to share her story to help others. Sending you love and prayers, as well ❤️. -Stephanie
She really had to be kind of smarter and more aware than her doctors! That’s awesome on her part, but it’s scary that her doctors never mentioned the symptoms, or weren’t even aware of them, and tried to convince her that she was pregnant. This story was a very eye opening story!
Your name says it all - "Good Grief." Underscores how much we have to advocate for ourselves! -Stephanie
@@ThePatientStory Yes, definitely! And for our family members that can’t advocate for themselves as well.
God bless Sara and all who have to deal with cancer in all its forms. Thank you for sharing your story, Sara, and thank you to this channel for helping bring her important message to others.
Im still in the beginning stages of finding out ,seeing a oncologist gynecologist on the 19th ,freaking out lots,they call it cystic mass
Has anyone taken chemo pills? Currently going through chemo for Stage 2 Endometroid Endometrial Carcinoma. My doctors in Canada are suggesting a 3 year chemo maintenance pill after 6 cycles of IV Chemotherapy.
I love you, Sara!!
Nice to meet you Sara
New Subscriber here from Amman Jordan Middle East Jordan
Good Luck
Elizabeth, thank you for the follow and kind words!
How did you know they didn’t mix your test up with someone else or get it wrong? I’m just amazed how women go to such great lengths after one test. Labs make a lot of tests.
What kind of cyst was it if you don't mind me asking? I have an endometrioma that's causing me all sorts of symptoms and pain. I had a total hysterectomy 2 yrs ago. My dr.s aren't listening to me.
Please find a doctor that will listen to you. 💕
How are you now?
I’m not a doctor but how do you have an endometrioma if you had a total hysterectomy? Do you still have your ovaries?
find a new doctor that will listen and arrange for its removal.
@@Katiee0592 unfortunately this is easier said than done as i am still trying to find one who actually listens. It's horrible once you're done with your early reproductive years you somehow become irrelevant and invisible.
Treatment is done without TAXOL? For ovarian cancer stage 3 .
Hello my name is Pretty from South Africa, is it possible to have an Iberian cancer before the age of 30? Cos I’ve been experiencing a brown discharge each and every month, severe period pains, and abdominal pains. I’ve been in and outs of hospitals and they say I have an infection- they gives me treatments but after the treatment these things comes back. What should I do? Please help 😢
try calcium and Magnesium pills, see if they work for you
Hi Pretty…by this time hopefully you have some answers. Hope you have not panicked…period pain and cramping is very common and doesn’t necessarily mean anything bad. Ovarian cancer symptoms are: Feeling full quickly after eating, bloating, abdominal pain, changes in bathroom habits like frequent urination or constipation. I would see if you can get an ultrasound to put your mind at ease 😊
I have been spotting for 6 most, skipped a couple of periods, but spotting throughout the month. About ever wk and a half I get nausea with pressure 8n lower abdomen with bloating and gas and bowel issues. I'm 46 and passed it off as perimenopause. I finally went to my gyno Dr. And she did an ultrasound. She tried to do a biopsy at my app but my cervix is closed. On the ultrasound she saw a "probable"cyst on my left ovary that she said she would monitor. I have a tiny fibroid on my uterine wall, and my lining is abnormally thick. They also saw a " probable" polyp, 1.5 cm big. They are doing a hysteroscopy/biopsy with sedation, but can't get me in till January. This terrifies me
Can you make an appointment with a totally different provider so you can be seen before January? Sis that’s too long to wait…
@@pronounsconspiracytheorist I don't think so, my insurance won't cover it. Someone suggested me to call and tell them I need it done before the end of the yr. I have reached my deductible for this yr. It's pretty high. In January, it will start over. I have kaiser. They are telling me they're backed up due to covid and since it's a biopsy it's considered elective surgery unless it life or death surgery🙄
@@pronounsconspiracytheorist btw....I love your title name...people call me a conspiracy theorist 😉
Do u have an iud? I have an iud and I’m always spotting with no period this concerns me :(
@@lsltorres12 no iud...never have taken birth control, never given birth. My periods have always been normal. I'm 46, so at 40, minor changes to cycles began, but seemed to be normal and perimenopause. All of a sudden spotting, but no real periods, nausea, and just recently unusual back pain and menstrual cramping at all times of the month. I had another ultrasound 2 weeks ago, and my endometrium has even gotten thicker. I finally have a biopsy this Wednesday. I do have most symptoms of endometrial cancer, but it could be one other condition that is like pre cancer. I should of pushed for a hysterectomy.
I had a laparoscopy for the removal of my ovarian cyst on 3rd January 2022... My movie insist had no symptoms... And even after having a cyst of 6 in my periods were normal... But after the surgery it has been 4 week I have not had my periods... Generally my cycle is of 3 to 3 and half weeks but it's over 4 weeks and there is no period... Also I am having minor cramping in my pelvic area and lower abdomen.. is it normal after a laparoscopy to have delayed period and cramping? ... If yes then how can I get my normal periods aur how long does it take to have normal periods after the surgery?
Gurleen, apologies for the belated reply! We do not provide medical advice - the best thing to do is to ask a specialist about that. Make sure you get your questions answered and don't be afraid to speak up for yourself. Sending you my best ❤️ . -Stephanie
Hi thank you Sara for sharing your story it was really helpful
Hi there. My name is Aliyah and I’m 22 years old and a mom to a 2 year old daughter. My mom had cervical cancer, my aunt and grandma breast cancer, and my cousin died of brain tumors at 25 years old . I have been having pain in my stomach for many months, no peorids in 8 months but swollen in my stomach and hard like I’m 3 months pregnant. I also have had white foamy stool and Back pain and always feeling full and going pee. I have begged the doctors to help me but I was in the er until 3am the other night for them to tell me nothing is wrong with me I just have a stomach bug. Could this be true? I also have had a lump in my breast and a cyst on my ovary that my obgyn dismissed I have medicade so I tried to make an appointment with a different doctor and they won’t let me please what do I do I don’t want to ignore this and die while I have a daughter but no doctor seems to care.. I’ve been so reluctant to believe myself because my daughters family on her dads side are all nurses and tell me I’m just crazy and a hypochondriac but I’ve never even thought or said something was wrong with me until after symptoms started
If pain happen sometime then should we need to concern or if the pain keeps happening then should we need to concern?
Hi Ash, we don't provide medical advice but if you are feeling pain (especially persistent), it's a good idea to seek some medical/professional attention if you can.
@@ThePatientStory Thank you so much
What do u mean by bloated stomach does it include excessive burping or passing gas? Or just plain bloated hard stomach?
Just bloated
Hi~My Mom also had constipation and diarrhea, at times; plus, lower
back pain and weight loss of 40 lbs.
Misdiagnosed for a year with Gallstones and was a Stage 3 CA:(
@@hollyfisher8811 sorry to hear that.. mine come out multiple gallstones,i just have gassy stomach all the time and excessive burping no pain anywhere on the body.
I had burping, back pain, bloted and 🔥 in my stomach. I went to do a test but like always doctors said is a cyst
See a doc don't take medical advice from anyone but def with bloating etc mk sure ur aware and don't ever be scared to call, I am a gyn nurse. Never stopped to even notice anything as I was always with my patients. July 2016 diagnosed with stage 3 ovarian cancer. Just I like to spread awareness be present with your body
Which is the trreatment correct for ovarian cancer stage 3 can you help me?
Hi there, sorry for the belayed response. We don't provide medical advice - this is a community platform to hear from other patients and caregivers.
@@ThePatientStory okay
a tumor can cause a positive pregnancy test??
Yup mines did..
It is horrible knowing you "should" be on the medical helping side and then being on the sick side. It does feel like a total loss of control.
Thriver. Way to think 🙂
And my Mother had ovarian cancer
Please get tested
@@christinesullivan5429 what a test?
@@christinesullivan5429 which is test?
CA125 leve
It should be between 0-35
Luke 11:28
But he said, Yea rather, blessed are they that hear the word of God, and keep it.
Proverbs 18:22
Whoso findeth a wife findeth a good thing, and obtaineth favour of the LORD.
1 Corinthians 11:13
Judge in yourselves: is it comely that a woman pray unto God uncovered?
Luke 19:23
Wherefore then gavest not thou my money into the bank, that at my coming I might have required mine own with usury?
King James Version
7:43 what is so funny?
Ur left eye looks like it’s pushed forward from its normal place....almost like proptosis but not quite
@@Sharon... I’m just telling you what I observed. I’m not telling you it’s relevant to cancer.
I notice it too! Didn't notice until I read your comment. You're right though.. looks different than the other eye
And how much is this connected to stds...very common...
Not true. Cervical cancer is connected to HPV, not ovarian cancer.
@brian miller
Where do you fantasize your opinions from? Do you think all men with prostate, bladder or colon cancers got them from STDs? Cancer for either men or women is not a sign that a person has had an STD.
Karmonas is great. My experience is with Karmonas Petoskey. I thought I detected a Michigan accent from u!😀