Advice would be appreciated…

Hi Ladies,

I’ve been lurking here for a while now, hoping to discover information relating to possible causes of high CA125.

I have been having unpleasant symptoms for several months, (pain on and off at different times of the month, heavy prolonged bleeding, general tiredness and back ache). My doc ordered a CA125 last year and it came back elevated, so she referred me to a Gyn.

TVUS was normal, the Gyn explained that endometriosis was the likely culprit and recommended a diagnostic laparoscopy. Lap, and endometrial biopsy, came back negative. No endo, no fibroids, no cysts and my uterus appeared to be normal. My Gyn felt that an endometrial ablation might solve my bleeding problems which he thought could be caused by hormonal imbalance, but was not prepared to carry out the procedure until we got to the bottom of the high CA125 (retest at the time of my lap came back elevated again at 64).

Next stop was an appointment with a gastroenterologist for a colonoscopy and CT scan – both normal. No polyps, no IBS, no diverticulosis. He also retested the CA125 and yes, you guessed it, it was elevated again at 90.

He recommended monitoring the CA125 again three months later. I have recently had the results back, - another increase, up to 113 now. As we seem to have ruled out other benign causes, my Gyn now suspects adenomyosis, which he says can only be diagnosed after removal of the uterus, or in his words I could be a ‘ticking bomb’.

Has anyone out there had a similar experience? I have another CA125 scheduled next month and an appointment with my Gyn to discuss options, one of which would be a hyst. I know that OvCa is uncommon in someone my age (42) but I can’t help thinking about the possibility.

I would suggest seeing a gyn oncologist. The fact that your CA125 keeps moving (in the upward direction) seems unusual. Something's going on. I applaud your doctor for taking a CA125 right from the start. Seems like his/her eye was focused.

BTW, I was 45 when diagnosed with ovarian cancer. It does happen, probably more than we think.

Good luck, wishlist. Keep searching till you get answers. Trust your gut.

Wishlist

I was 43 when first diagnosed with ovca. That is so weird that your CA125 continues to rise, but clinically they can find nothing wrong.

I agree with Maureenie. Get referred to a GYN/ONC.

Please let us know how you come out.....

Hi wishlist, and welcome

I would second what ((Maureenie)) proposed. Before I was dxed, I was in your exact spot, except that my gyn referred me right away to a gyn oncologist.

I had a whole series of CA-125's drawn, looking for a trend (which we found, eventually).

Elevations of the level you are referring to are not uncommon in menstruating women with endo or adeno or several other conditions, however, it needs to be investigated.

I had a perfectly normal TVU other than what appeared to be a functional cyst or two at the time of my diagnosis

Dorrie

These are experts and hopefully can find out what is causing the CA125 to rise with nothing showing. He/She may wish to see all your reports as well. I too would be concerned and would want to get to the bottom of it and the gyn/onc is the way to go.

Hi Dorrie

I hope you don’t mind me asking a couple of questions! I was wondering why if your TVUS didn’t appear suspicious, you opted for surgery. Were your CA125 results very high? How long did you continue the blood tests before going ahead with surgery?

My gyn has said that hyst is an option for me, but it seems an extreme measure based on CA125 numbers alone, although of course it would cure the painful, heavy bleeding which would be a relief. Incidentally none of my blood tests were drawn during menstruation.

Thanks to all for the advice re a gyn/onc; I will certainly be talking to my gyn about a referral.

	Quote:
Next stop was an appointment with a gastroenterologist for a colonoscopy and CT scan – both normal. No polyps, no IBS, no diverticulosis. He also retested the CA125 and yes, you guessed it, it was elevated again at 90.

Hi, just a quick note. . . . a colonoscopy can't diagnose IBS. It can only show that there isn't any malignancy or abnormality. Or at least that is the belief in the UK.

I have had all sorts of symptoms that could be all sorts of things inc. ovca or colon ca; I have had colonoscopies that showed nothing; so they decided it must be "IBS" (which seems to stand for "I don't know"

Love and best wishes
H

A couple things about my history

--I was having no symptoms at the time of my diagnosis. My mom had been dxed with several kids of cancer including breast, ovarian and colon (over a 15 year period). At the time of her ovca dx, which was just 5 months before mine, her gyn-onc suggested annual monitoring with a ca-125 and TVU.

--My CA-125 was 90, and over a two month period of time, more than doubled; these ca-125s were drawn so that they were at the same time in my menstrual cycle, to hopefully standardize for any effect of undiagnosed endo. (I honestly don't remember what phase it was - just that it was important to be the SAME time - I think it may have been several days after the start of my period, but I really don't remember)

--I gave permission for an oophorectomy and left the decision about a hyst to my doc (a gyn oncologist). I was strongly considering an oophorectomy anyway.

--The inital pathology was "not normal" "not cancer" on the ovaries. After a brief intraoperative discussion with my DH (who is an MD) and my long term gyn, who was assisting, I had a total hyst right then and there.

Even after the doubling, my gyn onc did give me the option of waiting another month. Frankly, my regular gyn was much more interested in an immediate hyst. I found the gyn onc to actually be more conservative

Dorrie

Hi wish,

Excellent advice from everyone!! You really do need to get to the cause of this rising ca125 number and I too applaud you doctor for even running the test.

Unfortuately ovarian cancer does not discriminate and age is not an issue. We have heard from teenagers on this board who unfortunately were diagnosed with it.

An appointment with an oncologist/gynecologist is definately warrented.

Wishing you lots of good luck
Rosalie