Hello everyone, I’m looking for people’s thoughts please .
I was diagnosed with HGSOC in July 2022.
Had 5 cycles of chemo ( 1 of carboplatin and taxol - allergic response to taxol , 4 of carbo) debulking operation in Jan 2023 , followed by 2 further rounds of carboplatin.
I have been receiving Avastin and Olaparib since April 2023 .
My CA 125 was at its lowest in Sept 23 at 11 and has steadily increased since then to 43 at present .
My oncologist is reluctant to scan me as he says that this marker is not necessarily a sign of progression of disease as my reading at diagnosis was in the upper 2000s , so is still a small percentage of that at present .
I have said several times : what is the point of a normal range if the percentage is seen to be more relevant. He has suggested that if it reaches 100, we scan then , as we would have to stop both treatments if progression was found .
I know I could push for a scan but am not sure of the best way forward. I am symptom free . Has anyone else been told that the CA125 is not the be all and end all of diagnosis?
I’m just in such a dilemma and would appreciate your thoughts please .
Thanks K x
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Norelo8
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Thanks for replying Pooshon, it’s interesting that your oncologist takes the same view .
I suppose one of my problems is that I hadn’t been having any symptoms , until I was diagnosed at stage 4b in 2022, which occurred following unusually prolonged constipation.I I’m scared I’m missing something
My oncologist did a scan this year at 48 and there were already substantial tumors. She put me on second line chemo straight away.Can you, or anyone with you advocate for you?
It could take a long time between 40 and 100. Ask whether if you had any tumors now how advanced they could get in the interim?
They may want to be holding out on next treatment to ensure there's sufficient to treat vs how many treatments you can handle in the next few years?
hi, my oncologist scans once I hit over 30, but goes by the trend rather than the number. I started at 450 on diagnosis.
That said, this time my CA125 has stayed at 10 and I’m symptom free, but he decided to scan 12m after I finished the last chemo and they found some ‘concerning changes’
Hi Norelo8, my story is almost identical to yours in terms of dates, diagnosis and treatments, however the highest my CA125 has ever been was 38 and that was with a 14cm tumour! It has remained around 10 since completion of surgery and chemotherapy. I have had a CT scan every 3 months so far, regardless of CA125 number. Fortunately I have remained symptom free and NED to date. If I was you I'd definitely be pushing for a scan!
Re being scared you're missing something: I know exactly how you feel.
I don't know whether this will fit your situation and you may already know about it but there's a trial which showed no difference in outcomes between women treated early for a recurrence based on CA125 and those treated later based on symptoms. There can also be some benefits to waiting in terms of extending as far as possible the period of time between chemo treatments. The Target Ovarian Cancer website has some useful information.
Go with what your oncologist says - the point is that you are on Olaparib and Avastin - if he does a scan now, and there's even the slightest hint of visible progression on it, you will have to stop the drugs you are on immediately, those are the NICE rules. Those drugs, if not holding the cancer completely steady, will be slowing it down considerably, so you don't want to stop them unless they stop working altogether, because then the only option is more chemotherapy. Your oncologist is following this treatment route because he knows this... And yes, you may eventually need more chemo, but the longer you can put that off, the better, particularly given you will not be able to have either of the drugs you are currently taking again (NICE rules).
This is very useful information, and remember, just because the CA125 has increased, doesn't necessarily mean that any potential evidence of disease will be immediately visible on a CT scan.My CA125 increased slowly over a period of several months, with no visible evidence on a CT scan, it was approx 9 months before there was evidence of a recurrence and another 3 before I started chemo again.
It didn't seem to affect the long term outcome, and I'm now 3 years NED after secondary debulking and chemo for HGSOC 3C.
My oncologist looks if my CA125 is trending up. Symptoms aren't always there when there is a tumor/cancer spreading. I would recommend that you talk more with your oncologist to understand their reasoning. I've also learned that we have to be advocates for ourselves and push to understand or to get someone to listen to us.
Hello 👋 It is a worrying time when CA levels rise but I would suggest speaking to your oncologist for some reassurance. My oncologist has the same view. I have stage 4b clear cell cancer, & have just reached remission after 1st line treatment. However my CA level is still at 79. My Oncologist said its is likely to still come down further as there is no evidence of disease and will only scan in future if it were to continually rise & I experience symptoms.
Yours is still low & a scan can't pick absolutely every little thing so it may be better to wait & see. Tough I know. All the best whatever you decide xx
My CA-125 rose and then continued to trend upward. PET scan revealed a reoccurrence 2 months after frontline. This is strictly anecdotal but for some it seems rising CA-125 is predictive and future scans then show disease. For others they might have a low CA-125 with progression. My CA-125 at diagnosis was 2050. HGSOC Stage 3C BRCA- HRD-.
CA125 definitely is NOT the be all and end all of diagnosis. Many consultants these days don't even tell patients their CA125 results, because it causes so much anxiety. Scans are much more reliable. Additionally, many consultants don't treat rising CA125 even if it's rising a lot (although yours is only just above normal), on the principle that treatment impacts quality of life, and can also be less effective if given too often. I would definitely say trust your doctor!
I see you have so many conflicting replies. I don't want to confuse you at all. My thoughts are that you should put trust in your doctor. If there is any chance of you being removed from those drugs I wouldn't take it personally. I have been fighting this disease for 18 years. My CA 125 is generally over 200 and I have had a decent quality of life. I am on a trial right now taking a parp inhibitor with Avastin.
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