I'm going through the diagnosis process at the moment - OC still not confirmed, but I wondered what all your initial symptoms were and how far along they were before you got help? What were your initial CA125 levels? Do any of you have other gynaecological conditions like me, which includes ovarian cysts, fibroids and endometriosis?
Very worried over here and I guess I'm reaching out to hear other people's experiences at this stage in the process. I've seen a consultant and had a CT scan, just awaiting results
Thanks xx
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K-Bear88
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My very first symptom was pain, mostly in my left ovary before/ during my period, bloating that would persist and got worse over time and urgency to urinate. At the beginning of the year my period started skipping a month which I thought was due to perimenopause - could still be the case, but during the no period months my symptoms were worse. All in all, very non specific signs and easily attributable to anything but OC. My only CA level measured so far is 188. My gynecologist discovered a mass during an annual ultrasound. My main risk factors are breast cancer in my family on my mother’s side and perimenopause. A couple of years ago I did a short herbal hormone balancing treatment which helped with breast pain and heavy menstrual bleeding, but now I’m wondering if it did not also play a role in my current OC.
I’ve just been through the diagnosis phase myself which took a month and was very stressful, so I very much understand what you are going through. Try to focus on the positive aspects and take it one step at a time.
Thanks very much for your reply. I’m only 36 and a mum of two pre-schoolers. I have an abdominal mass and bloating. CA125 measured 89. I’m also worried I’ve got ascites but haven’t had any results yet, just Dr Google. I need to stop looking things up and wait but it feels like the longest wait of my life 😩
Initial symptoms are so varied from person to person, you could probably fill a book. I really didn't have any initial symptoms, except the most vaguely rounded tum which still looked fine in all my size 10 dresses, so I thought it was old age as am in my seventies. AS I had had breast cancer 20 years before my GP did blood test which showed CA125 in 400s so that was first trigger but it took 3 months (because of investigatory complications) to start treatment. Nonetheless, 3 years later I am NED, although terminal but treatable. I know others who are still merrily living normal lives ten years after the same diagnosis, i.e. 4b. Did not have any other gynae issues. You will feel better once you have your result and, if OC, you have a plan. Limbo can always be difficult. MY very best wishes, and take heart. Emma xx
Thank you for your reply and sharing your experience. My mum had breast cancer twice and finally passed away at age 54. Although no BRCA gene in our family. I’m convinced I’ve got OC, I just hope they can treat me 🤞🏻😔
I very much relate.. my mother lived with inoperable 4 stage breast cancer for almost 8 years. My grandmother got a mastectomy but died 2 years later.. Seeing them go through this ordeal took its toll on me and unfortunately I did not address my trauma appropriately.
I was expecting breast but it turns out this beast can evolve.. also no BRCA based on my genetic tests so far. Had I had it, I would have considered ovary and breast removal after I had my daughter. The anxiety is the worst part. Try to find ways to manage it that work for you. I’m seeing a psy, meditating, yoga etc.
I’m really hoping that you do not have this. And even if you do, you probably caught it early and it’s treatable.
One day (around 1st Feb 2023) I felt little pain in stomach and couldnt eat properly for two weeks where my tommy got big like 6 months pregnant women. I keep thinking Im going to burst… went to GP and had blood test done. When went to discuss the result of my CA125 was over 5000. GP told me go to A&E and all started there. So no symptom before that at all. I was told later on that it must have been there for four years or so and finally burst.
Yes, I agree. I never googled and only asked people I knew in the field some questions but waited to see oncologies.
Hi, my symptoms were mainly related to endometriosis - pain, heavy bleeding, IBS, bleeding between periods but I think that was from womb polyp. Investigations showed possible malignant transformation of endometrioma which surgery confirmed. CA125 was 67 before surgery.
Am sorry you're in the position, the waiting is so horrendously hard. The unknown especially. Feel free to private message me xx
I'm so sorry to hear you're going through this worrying time.
My first was a sudden and brief pincer-y pain in my belly. I had it a few times, weeks apart. Then I noticed a lump in my tummy which disappeared. I decided foolishly that it must be a hernia, and didn't even get it seen to. This was in June 2023. However, I think that may have been a pedunculated fibroid on my uterus that I had, in addition to what turned out to be ovarian cancer and actually also uterine cancer. I will never know if the lump was the fibroid, or it was the tumour (both ovaries and pedunculated fibroids 'float' about).
Around July maybe I started to not want to eat much. I put this down to stress. Over the last few years I'd also had a few urine infections, which I put down mostly to peri-menopause.
By early September, I was on holiday and uncomfortably bloated and unable to do a no 2. I knew I should go but couldn't. My boyfriend was feeding me tablets for his own issues which would relieve the bloating for a bit but then it would return.
Late September I suddenly bled, twice, a few days apart. (I was on HRT and the bleeding was not when it should have been). It wasn't like period blood. It was like blood when you had just cut yourself. It was only then I knew that my problems were gynaeological, rang 111 and got straight on the cancer pathway.
During October (2 x US scans done during this time as well as a uterine biopsy) I felt increasingly exhausted, not helped by sleep. My bloating became rapidly worse and by the first week of November, to get from A to B I was slowly waddling like a pregnant woman and having to go up and down stairs pretty gingerly. On the left (cancerous) side, I felt like my organs were being pushed upwards / into my hip. When I lay down in the bath, I could see that my left side of pelvis was raised significantly more than the right. Once, I couldn't wee for 5 minutes. I had to stand in the bath and contort myself/ push out my pelvis just to be able to wee.
Surgery was mid Nov 2024. My OC (Clear Cell type) was staged at 2B out of caution/due to adhesions to the bowel even though the tumour was still encapsulated inside the left ovary (only just). The tumour was 15cm x 12 x 10 or thereabouts. There was no visible evidence of disease outside of the ovary. My UC was staged at 1A and had only just tipped into the cancerous stage at the time of surgery. The peduncular fibroid was 10cm diameter.
Fast forward to June 2024 after Carbo/Taxol regime and I have had a clear scan!
I tell you all this because in my experience, scan reports and symptoms can be hugely confusing and it's not until surgery that you will get the full picture.. , and even then things can remain a mystery. I still don't know which cancer caused the bleeding and never will. I hope you find this timeline helpful a though we are all different and Clear Cell does not behave like HGSOC ie Clear Cell grows much more quickly.
But mainly I hope that you find hope in my story, which so far, is good and I am recovering well. My hair is even growing back! I am still very tired though. My cancer could come back, but I am hoping that had the potential spread to the bowel happened, as they feared it could have (microscopically) we may have seen it appear by this stage, 8 months post surgery. I may eat my words, but all we can do is hope!
Good Luck I am thinking of you and wishing you well
PS Just re-read your question, so adding that I did indeed have endometriosis but did not have it diagnosed til last Nov! I had had very painful periods in my 30s and 40s (I am 52) and had also had ovarian pain on the left hand side before/during my periods in these decades but (there is a theme here with me) I put it down to just periods.. being a woman, etc and never got it seen to. This endometriosis is thought to have grown into my Clear Cell OC.
When my CA125 was done in Oct 2023 (so during diagnosis) it was 60 something and the CA19-9 one was almost exactly the same. So again, will it remain a mystery as to what raised these? Given I had a fibroid and endo, was it the cancer that raised it or those? So mad. CA125 went down to 2 after surgery, but then they had removed the fibroid, ovaries, uterus (and thus the endo) so who knows if it will be a marker for me going forward. I haven't seen my onco yet post scan so haven't been able to ask. x
First of all I’d say ignore the CA-125. It’s unreliable. Mine was reassuringly low. My cyst turned out to be malignant.
My symptoms were non- existent almost, until I discovered post menopausal bleeding with a rapidly growing ovarian cyst. The only other thing I could say is I had noticed a little more urgency to urinate when I needed to go. I’d put it down to middle age and thought I needed to do more pelvic floor exercises.
I’ve recently started a blog about my experience - called it The Size of a Marlon in tribute to my cyst! You might find it helpful to have a read. Posts are not long.
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