I have a 3 month follow up U/S in 2 days since I opted for the watch and wait scenario rather than surgery since the OBGYN I dealt with told me she thinks the chance of cancer is low. I told her my aunt died of OC but that didn't change her mind. I asked a couple of times to get the CA125 test but was told they wouldn't do it because it doesn't really tell them anything even when I asked to get it so I could know more when going in for my U/S and even just for my peace of mind.
So I took matters into my own hands and bought a test thru Ulta Labs. Went and got my blood drawn and got the results yesterday. I got the CA125, CEA, and CBC and everything was in the normal range. CA125 was 18. So that makes me feel better.
So what would you do if you were in my shoes and the U/S shows no change in the endo? Keep monitoring it or go in and have the lap done? I know the CA125 has showed up normal on people who ended up having cancer. I have no pain and I wouldn't even had known if this hadn't been found as an incidental.
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I don't want to end up with a false sense of security with everything showing in the normal range. I'm post-menopausal so an endo seems to be more concerning. But I've never had any surgery in my life so that kind if scares me.
hi - I would definitely get it removed as my cyst on a watch and wait grew very rapidly and with normal CA125 - I had to undergo full hysterectomy in the end. I would recommend it’s removed early.
ps what I didn’t know is endometriosis doubles your risk of ovarian cancer…better to have minimally invasive surgery early than much bigger surgery later down the line. Pps this is solely based on my experience and what I now know…
But do I have endometriosis because I have an endometrioma? I'm unclear about that. I've read in other forums that it definitely does mean it and you're at stage 3 or 4 and others where their doctor said even though they have an endo it doesn't mean endometriosis.
And Tumeric, sorry you’ve been thru this ordeal but the question is why didn’t your doctor recommend cyst removal earlier before it started growing rapidly or as soon as it did? I found that obgyns are not even interested in watching cysts w ultrasounds. The only thing they seemed to care about is testing for STDs or labor related issues but no one is eager to follow a cyst. If you don’t mind sharing what type of OC did yours turn out to be? Hope you’re very well now 💕
As an OC survivor going through recurrence, I would def have the lapro by a Gyno/Oncologist and def since your Aunt had it genetic testing done not saying this is the case but you can have a normal or low CA125 and still have OC.
bizarre that they refuse a simple blood test. I would seek a second opinion. Your doctor sounds a bit casual. Endo can lead to many problems and become malignant. Good luck.
Prior to my diagnosis, I was checked for 3 different tumor markers - only to have all come back normal. My CA-125 has never been above 10.
The only “symptom” I had (in retrospect) was some vague, lower back pain.
An ultrasound showed a mass on one ovary and possible fibroids.
Even an MRI was inconclusive. But it also said “suspicious for malignancy.”
After meeting with a gynecologist and then a gyn oncologist, I opted for a total hysterectomy. Right up until surgery, neither doc thought I actually had cancer.
It wasn’t until they began the laparoscopic surgery that they discovered that I had stage 3 OC. Both ovaries, 1 lymph node, and a portion of my omentum were cancerous.
I absolutely do not want to panic you. I am just telling you what I’d tell my best friend: I completely understand why surgery is not what you want. But nothing is more scary than hearing you have advanced stage cancer.
What I do know is that I could have been more passive myself, back when my docs were offering just a biopsy or ovary removal. But I didn’t ever want to feel regret. I chose to be as proactive as possible.
I believe that the women on this forum would defend your right to make whatever choice you felt was right.
But, since you asked, I would encourage you to be proactive too. I would get the procedure done. If nothing else, you will gain clarity on your situation.
Thank you so much for your reply! I have heard the same from others that had no symptoms, all tests were normal and they had cancer after none of their doctors thought they did.
When were you diagnosed and how are you doing now?
I was diagnosed in November 2022 (at the time of a planned laparoscopic hysterectomy). On January 2, I started chemo (Taxol/Carbo). I had an infusion every 3 weeks until mid-April 2023.
My chart said I “tolerated chemo well” but I felt otherwise. 😌 I had reactions to chemo so I had to do a slow drip (so each infusion lasted about 8 hours) and I had to take pre-medications before each session (mainly steroids and Benadryl).
My scans were clear and I was declared NED in May 2023. I should say that my surgery went well and my gyn onc got all of the visible cancer at that time. However I did have cancer in a lymph node and on my ommentum - so I was confirmed stage 3.
My tumor was studied and I did genetic testing before chemo began, and I think those are very useful tools for oncologists in terms of deciding post-chemo treatment too.
I was told that I’m HRD+ but not BRaCA+… so PARP inhibitors were offered. My insurance denied Olaparib but it covered Niraparib (Zejula) so that was what we went with. I’ve been taking Zejula since July 2023. However, I could not tolerate the side effects of 300 mg of Zejula (severe headaches, nausea, etc) so we went down to 200 mg. I felt much better at that level but my blood work showed very low neutrophil levels. Ultimately we settled on 100 mg of Zejula a day for my maintenance dosage.
My oncologist is honest that there isn’t data to support the efficacy of such a low dose but we are both willing to give it a shot.
So far, I’ve remained NED since chemo ended in April 2023. I have made positive healthy lifestyle changes and feel good most days. I struggle with anxiety about the future, especially since my own mother passed away after only 3 weeks of being diagnosed with colon and ovarian cancer.
I find walking, breathing techniques, and pilates to help ground me (as well as good ol’ Zoloft). I feel good *now* and there was a time during chemo when I wasn’t sure I would feel normal again.
I also happen to have 2 friends who have been diagnosed with stage 3 OC since I received my diagnosis. They had different symptoms, disease loads, and surgeries - but both of them are doing well now too. We even share the same gyn oncologist - and it has given me even more hope that treatments are improving faster than ever.
Let me know if you have any questions. I desperately wanted first person experiences when I was diagnosed.
Hi, from my own experience I'd certainly go through with the lab. I wanted surgery but it took that long on the NHS that ovarian cancer developed after years of having endometriosis. This is a very short version of my story, but I'd say go with lap even if cyst has shrunk. No doc really knows what is going on until they explore inside.Sending you good wishes!
Only speaking from personal experience and without any medical knowledge: I would go ahead with the procedure. My laparoscopic hysterectomy was done with something called a DaVinci robot. I have 5 small incisions and I didn’t even stay overnight (which I found shocking at the time). I was walking the next day, even if it was just a few houses on my street.
Everyone handles surgery differently but that was the easiest part of this whole ordeal for me.
The surgeon probably wished she had a longer incision and better views (which should would have gotten with a more traditional surgery) but again, cancer wasn’t considered likely.
I hope the shrinking you’re having means that it’s benign! But I would still want to be sure. I am thinking of you!
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Slightly elevated ca125 with transvaginal and pelvic ultrasound unremarkable. Is it safe to say I don’t have ovarian cancer?
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Here's what the GYN said
I have a mass on ovary and ca125 of over 300 my gyne don't seem worried as I have a history of endometriosis . What should I do ?
