Ovarian Cancer Survivor: How I Got Through Diagnosis, Treatment, and Side Effects
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- čas přidán 4. 10. 2020
- Randalynn shares her entire ovarian cancer treatment journey, from her first symptoms, through surgeries and chemo, and also dives into the emotional and mental impacts. The then-36-year-old mother-of-two reveals how she was able to get through months of treatment and recovery.
Her full story and treatment timeline will be uploaded to: www.ThePatientStory.com → Ovarian Cancer Stories.
Hi I’m 76 . At 50 I had stage 3 ovarian cancer a tumour the size of a rugby ball and womb cancer , I had chemo and radiotherapy , and 26 years later in good health , I know I’m lucky , but there are many others , best wishes to you all xx
@Christine, what a wonderful thing to hear, that you've been on the other side for over a quarter century! Thank you for sharing! -Stephanie
Ur so lucky I recently lost an aunt to this type of cancer I'm so depressed
@@faraimusakuro9090 hello , I’ve just read you lost you aunt , I’m sorry for your loss ,you must have loved her very much , that’s the downside of loving someone , that we feel devastated when they leave us ,time will help bout it’s painfull to get there , we learn to live with the pain ,big hugs to you
Happy to hear that and it gives hopes to me as well because 2weeks before even my mother had diagnosed with stage 3 cancer and we are all worried on her health. Recently done with surgery and waiting for chemotherapy.. So my humble request with you is how did u manage with chemotherapy treatment and how did you fight against cancer pls do guide me on how to overcome this problem like what are the food need to give to my mother and things need to be added and not.. because we want my mother to live long and healthy with us pls do help us..
@@sahanashreebs9562 lots of prayers first of all for sure and believe and then lots of fruits and veggies and stay positive, I’m having my second round of chemo on Thursday (4 more after that) stage 1 o.c. let’s pray together 🙏🏼🙏🏼🙏🏼
You are a fantastic moderator
This is very similar to my story. I had complex cyst in my left ovary but I developed severe back pain and found out my right ovary was 4x the size it was supposed to be. I was told to stop taking iron pills because they felt it was making the problem worse. I thought I had a UTI as well. They told me to take 4 ibuprofen a day and would see me back in 6 weeks. I wasn’t happy at all with their treatment. Hopefully I don’t have cancer 🙏🏾
Very insightful video✨💗I’m 20 years old and I just had surgery to remove a 27 cm 20lb malignant germ cell ovarian tumor from my right ovary and Fallopian tube,along with my appendix, lymph node’s, and stomach lining. 😢 in two weeks I go to follow up with my surgeon to find out if I have cancer and what stage and all that. I’m still processing everything, and waiting for answers is absolutely unbearable at times so I find myself watching many videos similar to this one😆 I thank you for educating people on this extremely rare form of cancer and reassurance that I’m not alone in this ✨🫶
I hope all goes well for you Ashley
Stay blessed for life . May u have a long and happy life❤️❤️
you are so right when you say that these are the details people don't get to hear about, and it has been so helpful listening to this video. thank you both for both your parts in creating this very useful, very educational, video! xo
Madeline, thank you for dropping this message! I am so glad to hear Randalynn's story was helpful. I feel lucky to be doing this work :). If you want more information on her story (and others), you can go to www.thepatientstory.com/cancers/ovarian. Sending you best wishes! -Stephanie
Your story is so similar to mine!! I was 31 years old. Dr thought I had dermoid cyst. (Had 2 cysts inside) After a surgery to remove the cyst, they found out it was malignant. The doctor called me and told me it was cancer. I had to wait another 6 weeks for second surgery to remove the ovary and staging. The whole experience was horrible and shocking. My diagnosis was stage 1A immature teratoma grade 2. I got lucky that it was found early.
So glad it was caught early! Hoping you are doing well. ❤️ Stephanie
I have the same diagnosis kindly help me and tell more plzzz
How do you find out, you have cysts?
Opppopppopppp9o0iopppl80😊😊@@ThePatientStory
I'm 43 and diagnosed with high grade serous carcinoma August of 2021. I had no positive cancer markers, bled for 9 months before my hysterectomy and was told adenomyosis was the culprit, a benign condition. I developed an adhesion after the first surgery which created a fistula between the colon, vaginal cuff and left ureter. Just before the second surgery for the ureter injury, the addendum of the pathology report came back for cancer. It was almost missed twice.
My Oncologist wanted chemo first but I insisted on staging first through debulking. She did the surgery, released the adhesion and removed the omentum, mesentery, bladder peritoneum, ovaries. It was spotted everywhere in the peritoneum. Stage IIIc.
I'm in remission as of March 2022. So glad the interviewee had a positive outcome. Hope that's still the case today.
omg unbelievable! hope you are doing ok now. God bless!
Hey this is amazing to hear. My mother has just been diagnosed with Ovarian cancer which has led to floating cancer in the peritoneum abdomen. Her doctor said he wants to do a full heated chemo wash which we’re not sure about. It would be amazing to speak with you to see how your treatment went?
@@tingwang7712 Thank you so much! I am still cancer free as of today. My three month follow up is this month so hoping bloodwork still looks good.
@@pyramidsinparis6217 Hi! 👋 I've heard of hot peritoneal chemo although I've not had it myself. If the patient can tolerate the treatment, it seems to have good results based on the studies I read. Sounds like your mom has similar spread in the abdomen. Mine was haphazardly spread throughout in small bits, not "caked on" organs like my Oncologist described other stage III patients as having. During my chemo, I avoided sugar completely to starve the cancer. I tolerated chemo really well with exception to the first dose of Taxol. I had a serious reaction (most do) where my BP shot up, O2 dropped to 82% and I passed out. They pumped me up with steroids and oxygen and I bounced right back. I had meds for nausea but I actually had food cravings instead. Within 3 days of the first round, I felt weak and exhausted but craved fried chicken 😂. I avoided it until day 7, best fried chicken I've ever eaten!
The hardest part wasn't the treatment, it was my mental state and my caregiver's mental state. It was just as hard on my husband as it was on me, maybe even more so. I felt guilty for having cancer and my husband felt guilty for not having it.
Don't be afraid to do research online but also do not let the statistics scare you. Many of them are outdated percentages that haven't been updated in years. I wish you, your mother and your whole family the best as you go through this difficult process. I recommend joining Reddit and subscribing to: r/cancer. The community there is very supportive. You can find me there as user frontpleatedpants. 🤗
@@ppmny7015 thank you so much for the reply it means a lot! Ah jeez, this is extremely heartbreaking 💔 but connecting with people like yourself really does help give hope. My mother doesn’t have any spread to her other organs it’s just in her abdomen ascites and ovaries. Did you have a fluid build up in your abdomen? The doctor has a really reserved approach, maybe it’s just me being a protective son but I would of thought a full hysterectomy with a debulk of the abdomen wall and ascites would be the way to go with chemotherapy… It’s so confusing as there’s so much information out there some incorrect that’s half of the anxiety. Really appreciate the response I’m desperately trying everything to save my mother I don’t know what I would do without her x
Thanks for sharing your journey Randolyn I resonate with so very much here I've had 4 recurrences but I'm honestly still standing I fet MRI and CT scan results on Monday please wish me well I ended up with several stomas and reversals amd now one permanent colostomy it's a tough journey but I focus on other things apart from my cancer and I fo enjoy life with good pain management and really awsome doctors wishing everyone here love and good health mind body and spirit 💜
Ladies thank you so much for sharing this. I'm so glad you are both doing well. It was so incredible to hear your story in such detail Randalynn. You are both such strong woman. Thank you 🥰. I haven't had ovarian cancer but had a large endometrioma which caused my elevated ca125 levels and the doctors initially thought cancer would be the outcome. My ovary was removed. The only symptom I had was that my monthly cycle had lengthened by 5 days each month which was odd. Yes we definately need to self advocate for ourselves. All thr best to you both.
Thank you Randolynn. I was diagnosed with Endometrial CA 1 month before my 33rd birthday. I developed the cancer as a result of Lynch Syndrome/HNPCC. I had my 1st colonoscopy at age 25 and again at age 30 but never heard about Lynch until AFTER I was diagnosed with Endo. So thankful that you are doing well. God bless you.
Winnie, thanks for sharing your own story. We hope you are also doing well.
thanks for this testimony. I am one year post OP, still have trouble eating sometimes and my belly hurts getting up, but I am back at home and living my new life. this was really informational and I am looking positive into the future. and yes, life is different. I also found that being 100% honest with your oncologist helps and it takes the fear away. this is the first time that I had the guts to listen to something like this and I even seek it out now. still I have a lot of belly pain (my muscles and nerves are healing right now). at first it gave me concerns, but I know what it is talking to my oncologist. thank you ladies, for talking about this and helping us all!
Anette, your words are so touching - thank you for opening up about your own experience. We'd love to repost your quote on our social channels if you'd like that ❤️. -Stephanie
Thanks so much for this testimony. I was diagnosed with ovarian cancer in March. Exploratory laparoscopy turned into debulking after the tumour started to bleed. I'm same stage as Randalynn. This week a port will be implanted and next Monday I start chemo.
Muriel, sending you positive thoughts as you go through treatment. I know it's not easy to be in your position and hopefully Randalynn's story will continue to be helpful.
There are more ovarian cancer stories on our channel here: czcams.com/video/YkqzMUYb5XQ/video.html and also written ones here: www.thepatientstory.com/cancers/ovarian/
Best,
Stephanie
Similar experience at 62. I have always had a bad stomach and had endometriosis until my periods ended. Doctors always said I had IBS. A little over a year ago had cramps and bleeding. I went to the ER and they did x-rays and found a small fibroid on my uterus even after menopause. I went to my MD for over a year complaining about cramps. I had a colonoscopy and endoscopy. They found nothing. My stomach doctor had me do a CT Scan and they found a malignant mass on my right ovary. I went to an oncologist and he felt fluid in my abdomen and hardened pelvic area. I go into surgery tomorrow morning. When I told my MD that I read that having endometriosis when younger has a risk of ovarian cancer. She said she never heard of that? What the heck? Serious needs to develop some sort of test for ovarian cancer so its not the silent killer. I mean they were able to send a man to the the moon. Why can't they create a test. I am so scared.....
Cathy, first, I am so sorry to hear what you've been through. I hope you are recovering now from surgery and am just glad that you fought for answers, and are now under what seems to be the right medical care... thinking of you. -Stephanie
@@ThePatientStory thank you. Day 4 at hospital. Waiting for pathology results. Doctor was able to cut the cancer he saw. Thank you for the support. Stay strong everyone. I think about you all out there everyday.
For people at high risk there is a CA125 test that should be done annually.
Hey Cathy, how’s the recovery going?
@@pyramidsinparis6217 I'm in remission but now I am experiencing a lot of back and leg pain. Doctors say it could be from chemo but my last chemo was in August. I go to a pain specialist this week. I was taking Norco and have stopped because I am sick of taking pain meds. Always afraid the cancer will come back somewhere else. I am on disability but it doesn't pay the bills and I need a job. I still have about 30 thousand in hospital and doctors bills to pay. It was more but I was able to get a hardship discount or full payment. I'm finding that a lot of these places just don't want to work with me. So I just put pay them 5 dollar payments which they don't like. But I will fight and trek on. I will sip life like a fine wine. Thank you for asking.
Excellent interview!! Lots of great information and insights!! Thank you ❤
Excellent video. Great advice and super communicator. Bravo. Well done.
Thank you so much for making this video!
Katie, so glad you found it helpful! Sending my best wishes to you. -Stephanie
We need to always go back and educate doctors when they misdiagnose.
Thank you for sharing your story, I’m awaiting scans presently due to pelvic pain,but I suspect something will be found due to my symptoms. I’m In The uk and we have very different care paths, we can’t choose who we see, we just get referred to a team, I had a spinal cord tumour in 2013 and my GP just referred me to the spinal team and I had no choice in hospital, no choice in surgeon, the hospital I was given was 45 mins away. It was an excellent service and outcome I have to say and there’s no worry about us finding someone,we just turn up to an appointment. I think you are incredibly brave and it must have been really hard with young children. I’m glad you have a good supportive family and friend network.
I am sorry what you went true praying for you. I am going exactly what you going true right now .am 4 weeks post opp. Tomorrow I am meeting to my chemotherapy Dr and this helped me to prepare so much . Thank you!!
Awesome interview once again, Randalynn is a really informative speaker, great attitude, beautiful. Heres to the very best to both of you. I'm going to add both of you to my prayer list for a continued healthy life.
I'm so glad you're doing well. Listening to your story. It reminded me as to when I went to my physician about a spot under my eye that would not heal. He got out his sophisticated magnifying glass. He told me he's happy to tell me it's not skin cancer. Well, after about another month, I made an appointment with the dermatologist. It was basil cell carsonoma. I had six stitches, but they got all of it. I wish you had been able to get to the doctor to speak to him in private. That's what I did, I let my doctor know that he was mistaken that it was basel cell carcinoma. Felt good.
also you rock Randalynn .......
Thank you for posting this.
Can you also do a video on your food habits before cancer and the change in diet after cancer. Stay healthy🙏
Yep. Your abdominal muscles are so important for mobility. When you have a c-section you are severing abdominal muscles. It's hard to move after!
They don't cut the abdomen anymore. It's along the bikini line now.
Love this channel. I'm an aspiring gerontologist and feel that age should have very little to do with waiting lists and resource allocation. There are so many useless younger people contributing very little to society by choice whereas you might be older but more experienced, knowledgeable and busy contributing to many things that could benefit society long term. Medicine needs to be entirely personalised and I'm glad AI and neural network technologies are going to push things in that direction.
Male ER doctors sent my daughter home with a ruptured appendix! They (males) claimed she was having a bad period.
So sorry to hear your daughter had such a terrible experience! Better training would be beneficial all around, especially when there's a lack of understanding.
As a woman, I avoid male doctors whenever I can. I’ve found that they generally have a bias toward women as being hysterical and are less likely to take my concerns seriously. Not all but most of the men I’ve come into contact with. Just not worth wasting my time on them!
@@k.mcdonald1960 it doesn't mean that men dont get treated similarly by male doctors. I remember a trainee telling me that my problem couldn't be a nerve issue because that only happened in about 7% of patients, so he ruled that out. Guess what it ended up being?
I am glad you are doing great! I am an ovarian cancer survivor. Thankfully I had a great OB GYN who did an ultra sound, saw the mass on my ovary and ordered the CA125 test that day. Results in one day...I saw a Gyn Onc the next day and complete hysterectomy the next day. Sounds like the docs you saw were not very competent. The CA 125 is a standard test for anyone who has a mass on their ovary. Can’t believe they didn’t do that first.
Jennifer, so happy to hear you had a wonderful doctor!
You have to remember, she was only 36. It was extremely unlikely that her mass was malignant. I can tell from your picture that you are much older, a much more likely candidate for a malignant mass. Also, the CA125 markers elevate for many benign conditions, as well as malignant ones. It is far from a foolproof test. I think you are going too far, with calling her initial doctors incompetent. Her cancer was caught at stage 1C, which is very good, an excellent prognosis for permanent remission. Ovarian cancer is referred to as the silent killer, because many do not have symptoms until it is late stage, and even then, they go to a GP, thinking that they have digestive problems, and are treated for GI problems for months, before finally being investigated for gynecological cancers. I think that all of this young woman’s doctors did an excellent job. The benign terratoma which they initially thought that she had, is much more common than is a malignancy, in a woman her age. And a terratoma would also have caused an elevated CA125 blood test. Your doctors suspected cancer faster, as your potential diagnosis, because of your age, not simply the elevated CA125 test results that you had. The average age at diagnosis for an ovarian cancer patient, is 63.
@@anglophils645 wow….You are quite condescending and nasty. I was only 46 and was told up until surgery that it was most likely benign. Also a digital rectal exam if performed properly can detect a mass on the ovary. Many women are diagnosed at a young age unfortunately. Unless you are a gynecologic oncologist or have been through ovarian cancer you really should keep your mouth shut.
@@jfreeman3978 Hello Yes I am still here. I am so sorry to hear about your diagnosis. I am eight years out now for which I am thankful. Some of the things that helped me during chemo was: having a very slow drip… This helps your body absorb the chemo better. My chemo sessions would last about eight hours. The next day I would have fluids run through my port to also help flush through the chemo drugs. Also I would get a vitamin B12 shot to help with energy. Also, I found that trying to stay busy helped. Try to get out for a walk as often as you can or even take a drive to get you out of the house… It will help with your mood. Feel free to email me. Please let me know how you are doing… You can do this! Jenni.lopez1984@gmail.com
@@jfreeman3978 Glad you have a good mindset about chemo. Yes, it is hard on the family and they don’t know quite what to say or how to react. I am a volunteer at Colorado Ovarian Cancer alliance in their peer mentorship program.
Blessings to you and your family!
When are doctors going to start listening and taking our concerns seriously? When will they allow for ca125 to become a standard?
Unfortunately, the reason the CA125 test is not standard, is that it is not fully diagnostic. It elevates for benign tumors, as well as for malignant ones, and even for plain old endometriosis. If it were an accurate predictor of ovarian cancer, we would all be given it annually, the way we are given a PAP smear, to predict cervical cancer. The CA125 test is given as a baseline marker, before you have surgery, so they can check it again, after surgery, to see if they got it all. While it is not a good initial diagnostic test, it is a reliable test after surgery. Once you have been diagnosed with cancer, and treated, if ninety days later, your CA125 test goes back up, your doctors know to scan you for a possible recurrence. That is where the CA125 test is helpful, not in the initial diagnostic stage.
Yes but it still tells you you have something. Especially if your numbers are high. And what's this plain old endometriosis? There is nothing plain about that. Its painful. 👍😁
My CA-125 was 1600 when I was diagnosed. I wish this test was more readily available when you are showing symptoms. One year out and still in remission.
Some side effects of surgery and chemo are the gift that keeps on giving. Saved my life, but life will never be the same.
You need to detox your body … This will enable your immune system to start working again proficiently … 🙏🏻
I'm sat waiting for biopsies, been told they take 2 weeks .Tests and proding,probing and poking,a x Ray, blood tests,urine tests, upto now has been 8 weeks. I'm in lots of pain lower abdomen feel and been sick,blood down below after menopause,acid reflux,carnt pee enough,fluctuating bowel movements.I still don't have a answer yet what's wrong with me,but the dreaded cancer is on my mind Given the worry I am in ,you are so so very brave and informative for sharing your story .BIG BIG THANKYOU
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Has anyone taken Avastin (Bevacizumab)? What are some side effects. I have recurrent ovarian cancer and my treatment plan may include this medicine.
I feel like providers are not being 100 percent honest with us patients
The ultrasounds don’t see my ovaries anymore. The doctor said the size of them after menopause are very small like the size of a bean. Since I have symptoms I asked for the CA125 test he said no bc it’s often false positives. I then asked for an MRI he said no. My recent pain is NOT colon related. It’s not a UTI. I think I need that MRI. THANK YOU FOR YOUR story. You felt tired but what were the other symptoms besides UTI?
Hi I have just stepped onto this roundabout. I got the ultrasound test, not so graciously ordered by my GP who is well aware several of my female relatives, including my mother were killed by o ca. My GP dismissed the report's contents but I knew she was wrong to do so. She did not compare it to my 5 year prior report which she had in her records. She did begrudgingly write an unsupportive in tone referral to a gyno saying that I wanted to discuss removing the ovary. I want it removed ... no discussion!
If she had compared those two reports my long past menopausal only remaining ovary had tripled in size sometime in the last 5 years, joined itself to my bowel, altered the bowel wall significantly, had a cyst and lots of foci (none of which were in play 5 years ago) ...... but nothing to see here to warrant urgent action, despite excessive urination, bloating, and multiple GI tract problems.
So I discussed it with a specialist treating me in the same general location and he had a vastly different view. He ordered a battery of blood tests and a CT scan (better visualisation) - all actioned within 3 days. An in hospital look see was booked for 10 days later during the discussion.
I know it isn't a death sentence as a friend came through years ago. And whilst I had to assemble all my ducks in a row prior to the specialist discussion to convince someone in power that I must be further investigated urgently, the hardest thing was seeing in writing on my forms that he was searching for CA125 and ovarian cancer, the latter listing the reasons he saw it as a strong possibility. Seeing it in writing broke me. Feeling strong again today. Just knowing that someone has my back medically, and that I have beat the unprofessionalism of my GP feels empowering. When I am through the booked hospital test I will be changing GPs. This isn't her first error of judgement for me. Just the most dangerous, potentially.
Keep on pushing. If you get into the hands of professionals take everything they offer. My friend did.
@@verandahmeanderthe doctors work for you which I found out late. My CA 125 was 3408 and it spread City of Hope told me incurable. I am in Mexico Bio Care Hospital getting treatments. There working on my immune system. For two years going back and forth with different doctors them telling me you’ve gone through menopause. You’re in your 60s your uterus system then that’s why you’re spotting. You do have a cyst but it’s nothing to worry about the emergency told me I had diverticulitis which I believe it was the ovarian cancer that spread. I got ascites which I thought was gas for three weeks, but my stomach wouldn’t go down. This was four weeks ago and when the pathology test came back, they sent me to city of Hope I did a pet scan that’s where it showed me It had spread and it was cancer. City of Hope said I was not a candidate for surgery too many tumors no radiation. The only thing they could do for me is give me aggressive chemo. I asked them how much more time if I did that he wouldn’t say he couldn’t say he said we will control it, that’s when I came to Mexico I want quality of life.
Not sure if someone could answer this for me but I had a hysterectomy a few years ago. Kept my ovaries though and for the past few years it seems, I’ve had horrible pain in my left ovary area. My dr said it was probably scar tissue or Mr ovulating.. but it hurts almost daily. I feel like I’m losing it.. is it normal?! Idk what to do at this point. The last ultrasound a few years back was clear.. what else could it be?
Go get a blood test AND a transvaginal ultrasound ASAP.
@@PCT6566 thx. I had one last week. All good. She referred me to a GI Specialist to get a CT. She said it might be diverticulitis. 🥺 thx again I really appreciate it!!! 💜
Demand the c 125 blood test
My mom has ovarian cancer
HOW can a cyst that size not show up on x-ray?!?
What the treatment is recomended for ovarian cancer stage 3C
Hi there, please refer to a professional medical expert for advice on treatment - we are not a medical advice site. Thank you and good luck.
I had a biopsy, some chemo, then the major hysterectomy, debunking, etc. surgery, followed by more chemo until the CA125 came down and finished the series.That was followed by a year of what they called maintenance chemo doses.
Here I am years later. It worked for me and had a remarkable specialist.
@@Messymy Where your from. .?
@@Messymy For my mom not was surgery, only chemoterapy they said it was not operable....
I'm just recently diagnosed. I had the debulking surgery first (that's how I was diagnosed). I'm about to start the first of my six cycles of chemotherapy.
She is so good looking, its like she is weirdly good looking, so yeah thats rare
I’m in st.louis I could use some help
For my mom it was not surgery only chemotherapy i don't understand why.
So glad she got care and that you are there for her. -Stephanie
Bruh how's ur mom now
@@findit5246 is not too well ....
@@findit5246 He has abdominal pain. ...
She is so fortunate that there were still ob-gyns. How many women are going to die for want of diagnosis in order to satisfy the pro-fetal life who are criminalizing doctors for doing their job.
The mind is a great tool, but lousy master...(per my guru). This amazing gal knows how to handle such a difficult situation (staying realistic and positive) without making it worse by overthinking it.
Dang she is dissing care takers . That’s a Karen