CA125 question: I have stage 1c clear cell... - My Ovacome

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CA125 question

JOY202452 profile image
11 Replies

I have stage 1c clear cell cancer. My CA125 marker has been falling. Was 15.4 before third chemo, however it increased 2.5 points before 4th chemo. Now 17.9. Interesting in hearing from others eith variable CA 125 markers.

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JOY202452
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11 Replies
lesleysage profile image
lesleysage

Hello Joy, other 'internal happenings' can influence your CA125 to rise a bit, not just just activity of the cancer, so have you got, or had, an infection or something which could cause a bit of inflammation?

After I had surgery for bowel cancer nine years after my last clear cell cancer treatment had finished, the CA125 rose from 8 to 16, stayed at this and then gradually dropped to a stable level of 12.

If you have a CNS, then maybe talk this concern over with her? Warm wishes. L

JOY202452 profile image
JOY202452 in reply tolesleysage

Hi Lesley. Thanks for your message. I feel okay, no infection I can think of. My hips hurt as I have started hiking a bit. Feels like scar tissue adhesions. I had extensive endometriosis which made the tumour removal more complex. . My CNS says nothing to worry about but they will watch it: But I must admit it upset me as it was trending down nicely.

lesleysage profile image
lesleysage in reply toJOY202452

I can really understand this; Even after all these years, both my husband and I have feelings of 'being on edge' / anxious when the 6-monthly, and now moving to annual, ovarian cancer and bowel cancer test comes round. All we do is notice this anxiety and also focus on noticing other nicer things; it helps us keep a balance for most of the time. Warmest wishes.

JOY202452 profile image
JOY202452 in reply tolesleysage

I think the anxiety will always be there. I just need to get through the first few years clear. Terrified of a recurrence .

lesleysage profile image
lesleysage

A 'last share' - do contact the Support team at Ovacome for any queries, just a good ear to listen to you and also explore their 'Keeping Connected' grops and Webiinars by some of UK's finest gynae oncologists and surgeons. Many of us here, find their range of services a great help. xx P.S: Freephone 0800 008 7054

Flower-Lover profile image
Flower-Lover

I have clear cell stage 1A. Had 2 sessions of chemo and Niraparib for 9 months. My CA125 has never been reliable as a cancer marker. It has always remained around 18 even when I had my tumour before the Hysterectomy . Others I know have had very high markers of 100 or above. Some in 1000’s. It seems that perhaps your marker is like mine and is not a good indicator. Maybe speak to your oncologist about this. Take care

Flower Lover

Gerontious profile image
Gerontious

Hi Joy, I have raised CA125. Following chemotherapy it had dropped to 36. I've been on naraparib for 6 months and a PET scan last November was clear. However my CA125 has been steadily rising and at the last BT it was 350. Needless to say I find it a bit worrying. I am aware that it can be for any number of reasons and my oncologist said that some people are more sensitive to that test than others. I don't really know what to think. I have another scan at the end of February so I'm hoping it will still be clear. As for the CA125.....

Jacky5 profile image
Jacky5

I have peritoneal cancer. I had chemo 5 years ago and my CA125 also fell initial then rose towards the end of my treatment. I was told it was a normal reaction to the treatment and the inflammatory reaction it created. I can't remember exactly how long after treatment it fell again but maybe around a month or two?

All the very best to you.

Marieck profile image
Marieck

I also had clear cell and mine jumps up and down by about two. It also depends how high that number was before treatment? Mine was 28 before any treatment and is now about 7. The lower the number before treatment the more significant small changes are is my understanding. Hope that helps

FDMD profile image
FDMD

I know that the CA marker can go up bc of increased inflammation in the body. I wouldn't worry as the images give a better picture. In my own experience a few numbers increase is totally normal..it's when the number started to double like 13 to 26 for example, there was some progression. But again that's just me and my body. But I wouldn't stress over a few numbers increased

SopSinger profile image
SopSinger

That's well within normal and has not doubled. Clear cell often doesn't secrete CA125 so the test doesn't show very much. If your CNS is not worried, you don't need to be either!

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