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Rising CA125

catherine58's picture
catherine58
Posts: 92
Joined: Feb 2007

Hello all you transatlantic semi colons!

History ... I was diagnosed in Feb 2007 with a large tumour in my ascending colon and three lymph nodes affected by cancer ... Sailed through surgery and nine rounds of Folfox, and have been feeling great ever since. I have recently had some genetic testing and was originally suspected to have HNPCC (tumour showed micro-satellite instability which I gather nearly always indicates a genetic cancer). However, as yet they have not been able to pinpoint a specific gene change ...

As HNPCC carriers have a high risk of developing ovarian cancer I have started having my CA125 checked. This has been climbing steadily and is now 40, albeit only five points above the normal range, but still the trend is upwards. The doctors here (in the UK) favour a "wait and see" approach and suggest having it tested again in a couple of months ... I feel that in the US I would probably be given a battery of tests and possibly be offered a pre-emptive hysterectomy (here they tend to be opposed to surgery unless absolutely necessary).

I am 51 and still haven't got through the menopause (alas!) but my periods are all over the place and I sometimes get three weeks of pre-menstrual symptoms (backache, bloating etc). Have scoured internet for other possible causes of rising CA125 and of course scared myself silly in the process, as most of them don't seem to apply to me (e.g. pregnancy, endometriosis). Have read that other cancers, inc colorectal, can also cause level to rise ... My CEA has always been low but as it wasn't tested pre-surgery I don't know whether it's a good indicator for me or not ...

Wonder if anyone else has had a similar experience?

Catherine

angelsbaby's picture
angelsbaby
Posts: 1171
Joined: May 2008

Nice to see you again, No answers for you sorry I remember you posting about the same time as i was. Take care

michelle

PamPam2's picture
PamPam2
Posts: 376
Joined: Jan 2009

Hi Catherine
My tumor had spread outside the colon wall and to one overy. When they did the surgery they went ahead and did a full hysterctomy. I had given my surgeon written permission to go for it when he was in there and be aggressive with anything he found. Also three lymph nodes out of 14 tested were positive. I have always been glad this was done. The instant menopause was a little trial,not much compared to everything else, but now at least I don't have to worry about cancer in any of this area. I hope you can convince your physicians to be more aggressive if that is what you wish done. Sometimes I wonder if it was them personally, if they would just want to "wait and see." Hoping the best for you.
Pam

JADot's picture
JADot
Posts: 720
Joined: Jan 2006

Hi Catherine,

I am so sorry I was not able to get back to you sooner. What you described happened to me, and I chose to go the "take them all out path". After they looked over the bits there was no cancer. Instead of being bitter, I just chose to be happy w/ every way in which cancer was not found. As I learned afterwards that CA125 is not a terribly good marker with a lot of false positives. Apparently a lot of things can make it elevated temporarily. Hope have sorted out the reason by now. Keeping fingers crossed.

Are you thawing in England now :-)

Cheers,
Ying

lcarper2
Posts: 638
Joined: Dec 2009

Run don't walk to the doctor.no matter what we say here you need to consult you ONC get checked after you have been ned for as long as you have this needs to be address by a doctor...good luck...

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

Late 2005 my CT scan showed both ovaries were enlarged and my CA125 was 46 so I freaked even though my onc and the ob onc both did not think it was cancer related. The radiologist that did the ultrasound keep referring to the enlargements as "mets" so I freaked a little more and had my ovaries and fallopean tubes taken out laproscopically. Instant menopause and it ended up being 3 benign cyst on one ovary and 2 on the other!!! I was 51 and pre-menopausal.

I remember my oncologist saying CA125 was less reliable than CEA and we all know people whose CEA is 0 yet they have colon cancer.

It could be a sign of pre-menopause especially since your cycle symptoms sound like it to me.
Here there is a urine test you can do to see if you are pre-menopausal. I'd do that since CA125 can be impacted by hormonal things and if you aren't, raise cain with your doc.

Lisa P.

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