CA-125: Never elevated (but diagnosed Stage3A2 in Nov 2022)

[ZoeGirl123]

I was wondering if there are any other Stage3 ovarian cancer survivors who never had elevated CA125 levels in spite of advanced disease?

My tumor markers have always been “normal” although Ultrasound and CT scans detected masses before my debulking surgery (total hysterectomy).

I completed 6 rounds of carbo/paxil in April 2023 and have been NED since then.

I take 100 mg of Niraparib daily - as 300/200 mg were not tolerable dosages for me.

My anxiety about recurrence is compounded because CA125 has never been a good indicator of disease for me - and my oncologist won’t scan me again unless I present with symptoms. (I pushed for 2 CT scans since June 2023 due to pain but it only showed arthritis.)

Anyone else not able to rely on CA125 to warn of recurrence?

I’m working on being present, breathwork, exercise, and good nutrition. But I still worry more than I’d like.

Sending everyone here positive vibes!

[Phoebe1962]

Hi. I have stage 3 LGSOC which was diagnosed in February this year and for which I had radical debulking surgery in February followed by chemotherapy and bevacuizamab which will continue until next May.

My CA125 level has constantly been low and my CT scans both before the surgery and since it have not shown any signs of cancer. Nor did I have any symptoms of ovarian cancer , the diagnosis was a complete surprise.,So yes I’m definitely in the same situation as you.

I don’t have any words of wisdom except to say that I hope the treatment is effective and try not to worry about recurrence until you have a reason to be concerned. Try and live your life as best you can, filling your days with things you love. That’s the way I’m doing things now.

[Rosefence]

hi Zoe, I am sorry! My mum was recently diagnosed with 3A2 hgsoc. She is based in Germany. Once she finishes chemo, she will have scans every three months for at least three years. If there are no recurrences within 3 years, they will afterwards scan every six months. That’s normal procedure here. Try to get as many scans as possible, even if you have a less aggressive form of OC! Don’t wait for symptoms!

[Rosefence in reply to Rosefence]

also, my mum didn’t have elevated ca125.

[SopSinger]

My oncologist said that if a new symptom occurred and persisted for two weeks, get it checked out, otherwise not to worry. Doctors in the UK don't treat rising CA125 on its own unless you also have symptoms, so try not to worry that it isn't a good marker for you. Around 25% of patients don't have elevated CA125, so just pay attention to your body, without being obsessive. Sending hugs!

[delia2]

Hi. I have 3b HGSOC and my CA 125 was 8 at diagnosis and 6 at both recurrences. It is stressful not knowing. I was getting scans every six months. I’ve just finished chemo for the third time and am now getting one in three months because I still have a bit of cancer. If I were you I’d just “find” a symptom every once in a while. I don’t know how they can just never give you scans. Is that NHS policy or your oncologist? Maybe you could switch hospitals?

[thejoannabell in reply to delia2]

I was thinking the same thing about “finding “ symptoms at least once a year or so. I would think that they would have to scan if ca-125 isn’t a good marker for you. It is pretty reliable marker for me and I am still nervous about not getting regular scans any longer. (Diagnosed lllc in 2020, last scan was about a year and 1/2 ago.) Best wishes to you!

[delia2]

Thank you! I hope you stay ned!

[PyjamaDay]

I saw a recent conversation on a UK OC facebook group about having a CA19.9 blood test instead of/as well as CA125. Some ladies were saying it was more accurate for them than CA125. I'm afraid I don't know the details, and whether it's specific to certain forms of OC, but perhaps it's worth looking in to or asking your doctor/CNS about?

[Lara1 in reply to PyjamaDay]

Hi PyjamaDay,

I was just wondering about that! I just tested for both CA 125 and CA 19.9 and while the former has decreased for me after surgery and first round of chemo the latter is still elevated. It’s mostly used to monitor pancreatic cancer but it can also be raised in bile duct, colon, stomach, ovary and bladder cancer. Which makes it hard to know if it’s raised because of the initial OC or because there is spread somewhere in these organs. Do you happen to have the name of the FB group?

[PyjamaDay in reply to Lara1]

Hi Lara, it was on the ovarian cancer community group, a lady posted asking for other's thoughts & experiences on the 14th August facebook.com/groups/ovarian...

[Petrolhead]

I have CA19-9 and CEA as well as CA125. The CA19-9 used in mucinous OC because it acts like bowel cancer so they use the same test. My 125 test was not elevated above normal levels. I didn’t have any symptoms either. Might be worth asking about the CEA. It’s always worth having a bit more reassurance.

No test is guaranteed but it might be easier to persuade your oncologist to add another test rather than another scan.

Best wishes

Fay

[Sonya49]

Hi ZoeGirl

I’m in the same situation - I have stage 3B and I’m a CA125 non-secreter. I’ve just finished my 6th chemo a few weeks ago and I’m already anxious about recurrence. I’ve also had to push for a CT in 3 months time to see what’s going on (hopefully nothing!)

I wish I had something helpful to say…. You’re not alone and it’s really frustrating!😬

[0V0J0]

Hi. My CA125 has never been abnormal. Always 9 & 10. 50% of ovarian cancers do not show up on a CA125 so it should NOT be relied upon by the so called experts. I have found out about an HE4 tumour marker test ( it is currently being trialled by NHS England in 3 areas for early detection OC). It has been used in China since 2013 and Spain since 2017. Especially good for recurrences. I am currently paying to have this blood test done privately every 6 months and although my oncologist in Scotland had never heard of it my gynae oncologist has known about it for 10 yrs but was not allowed to suggest it to me as it is not on the NHS list. He is very supportive of me getting it and reporting it back to him. Hope this helps.

[Schnauzer19]

Hi ZoeGirl123, my diagnosis the same as yours, my CA125 was only 10 at diagnosis, it’s now 7. It is worrying we can’t rely on it but I’m going to use 10 as my “alert level” from now on.