Has anyone had there ca125 go up but feel so well

[DeefromLeeds]

Hi - i've just been for my 8 month check-up I felt totally shocked when the Dr said my ca125 had risen to 47 - I have been feeling so fit and well - The DR said she is going to send me for a CT scan..and told not worry is probably just a trend.!! any help would be appreciated

[BusyLizzie]

Hi Dee,

Everybody's cancer secretes a different amount of protein which is what the CA125 measures. So some people hardly show any increase in CA125 but the cancer is quite active, and other people have a high secreting cancer (like me) and so a slight increase is not likely to be detected by yourself. What was your CA125 at diagnosis?

My CA125 was 1600 (also stage 3c) at diagnosis, and I only started to feel unwell after treatment once it returned to around 500. However, this was probably because it was in my peritianum and so I started to bloat with ascites. How unwell you feel, is therefore probably to do with where the cancer is.

The CA125 is one of only 3 measures. The CT scan and how you are feeling are also very much taken into account by oncologists. They are keen to tell you that they don't treat numbers. Not sure I like the "just a trend" comment. Surely you want it to be a blip not a trend! Oncologists are a strange bunch.....

Love Lizzie

X

[DeefromLeeds in reply to BusyLizzie]

Hi Lizzie my CA125 was 2500 when first diagnosed, with treatment if went to 15. After 3 months I felt unwell and my CA125 was 50 and cancer was back.. It was 47 today... I suppose I've just got to wait and see what the scan shows..

Love Dee xx

[BusyLizzie in reply to DeefromLeeds]

Hi Dee,

Hopefully nothing with such a low value for you.

Love Lizzie

X

[wendydee]

Hi Dee

Hope it's nothing too significant. Have you got a specialist nurse at the hospital who you could ring? I find they are excellent at explaining the nuances of these things. It's not too far above the safe limit of around 35 (that's what I was told), so may be a blip.

Hope it is

Love Wendy xx

[bosue]

Hi Dee, I've been told my CA125 is a' red herring', it was only 28 when I had recurrence, after chemo it stayed around 40 t0 48 the scan was clear .Now waiting for results of recent scan as C125 is still rising. I have been told that you can have three CA125 blood tests in one day and they would all show different counts.My Onc nurse said "its only numbers" its the scan that will show anything, so please dont waste time worrying, I know more easily said than done. Good luck .Love Sue x

[daisycandoit]

Recently my ca125 stayed low at 37 when subsequently a pet scan revealed there was significant active disease present, so we were all thrown by that. Don't want to sound negative but they do keep saying it is just no's he did explain how that could happen but I didn't understand love Diane x

[nikki9]

hi my ca125 was 11,000 when diagnosed with 2c, after 6 treatments of carbo/taxol it went down to 17. On my 6 month check it had risen to 24 my onc said that the ca125 was a marker and as long as i felt well then i would be left alone. Unfortunately i became short of breath and had to have my lungs drained, also my tummy was uncomfortable and bloated, i had a scan which showed that oc was active and my ca125 had risen to 140 i am now having another course of chemo carbo/gemcitabine. I agree with everybody the ca125 is only a marker so please dont worry (sorry a silly thing to say) anyway a big hug nikkix

[Becalm]

hi! Dee

Yes - I like you was totally shocked when my consultant 'phoned to tell me that after over three years clear( following surgery and chemo.)my recent check-up showed that my CA125 had gone up to 47! You are so right to have it thoroughly checked. In my case it proved to be recurrence and I think I would have hesitated to reply in this way to your question if I were not also able to say that a further three years and some chemo. on I am still going pretty strong.

My consultant also said in that 'phone call - 'don't panic'- and I think that is good advice. Many things ,like infection elsewhere can push up your CA125 and as others have said it may just be a blip. Let us know how you get on and meantime you will certainly be in my thoughts..

B.

[lesleywigston]

When initially diagnosed over 6 years ago my ca125 was 9000.It went to 250 after hysterectomy and down again to 10 after 6 lots of chemo.The cancer returned after 5 months(ct results) but markers didnt change and even after another 6 lots of chemo they remained low though tumours were still present.Radiotherapy 18 months ago on para aortic nodes and markers never went beyond 27.yesterday i had the results of my first scan in 9 months and it showed no increase in tumour sizes and no other signs but my markers have increased to 70.It has warrented another ct in 3 months.On other sites i have read that pet scan is more detailed,should i ask for one? Has anyone else had one?

[BusyLizzie in reply to lesleywigston]

Hi Lesley,

Last December my CA125 was rising but the CT scan showed nothing obvious. I was therefore sent for a PET scan which shows pre tumour activity and they were able to confirm disease progression from this. They are very expensive though, so I think your onc will possibly resist unless it is his/her idea.

Love Lizzie

X