elevated CA125 in 45 y/o bc survivor

[RobynLee]

Hello and thanks for any guidance here.
I am a 45 year old woman who had breast cancer at age 37.  I have tested BRCA1 +2 negative (though my family is flooded with the BRCA 2 gene).  

Since September 08 I have had many pelvic symptoms, bloating, cramping, indigestion etc.  Serum shows mildly elevated Amylase and Lipase consistently (despite removing gallbladder in December).

In addition to this, I have been running mildly elevated CA125 since first checking it in November.  The highest it's been (and is currently) is 45.  

Transvaginal Sonogram revealed normal ovaries and an edometrial polyp of 1.3 cm.  This polyp was imaged 2 years ago and was then .5mm.

Not sure what to do from here.  Could the polyp possibly be responsible for the elevated CA125 and the Pancreatic enzyme elevation?  Could a polyp of this size cause cramping throughout the cycle - especially during times of estrogen surges.  I've read that bleeding is the main symptom associated with uterine polyps, and I do not bleed heavily, nor to I have any breakthrough bleeding between cycles.  My periods are very short (3 days) - though I continue to cramp and feel as though I'm bleeding when I'm not.  I do seem to get some relief days 4-7 or so.

Thank you so much for any insights.

Best, Robyn

[ladyjogger31]

Hi congrats also on your 8 years of survival. I agree with Becky she has given you very sound advise. I just want you to know we are all here for you and will be praying.
Love, Terry

[Tybear]

I personally, would go for the Ct scan. I had an ultra sound and it did not detect that anything was wrong, except that my kidney was backed up - the doctor's were quick to tell me my problems were from kidney stones! It wasn't until I had the Ct scan, that they saw everything. They literally told me " you have a tummy full of tumors"...it was quite the shock, especially because I was feeling so good otherwise.
My CA125 did drop after surgery, to about 16 where it's stayed ever since. It is suppose to increase when your cancer grows, but it didn't move when I had my recurrence at all. It's definatley not reliable for me...
I actually have to go for a CT scan every 10 - 12 weeks to see how I'm doing, so I hear you about the radiation thing! I should be glowing by now...
You can't look at the future what if's, only worry about the here and now - I think, if your this concerned, then the benefit's of a CT scan outweigh the risks.
Just my thoughts though...you do what you need to - there's nothing worse than second guessing yourself and living with doubts!
Take care and best of luck,
Becky

[RobynLee]

Thanks so much Becky. I appreciate your insight.  I was wondering if the CA125 of 46 has ever increased or decreased for you  - even after treatment?   My gyn explained that some women just don't produce CA125 in association with their ovarian cancer (even when advanced) - but I thought if one did produce it - it was an indicator of progression or response to treatment etc.  Now I'm thinking that some may have the mildly elevated CA125 for some other reason and Ovarian CA maybe an unrelated phenomenon.

This truly is a hard thing to understand.  If you don't mind sharing, was it a sonogram or CT scan that helped the doctors determine your cancer?  I've been offered a CT with PET, and have been reluctant because of the fact I've had so much radiation due to other issues (spine).  My sonogram said the ovaries looked fine and the uterus has a growing polyp (1.3 cm).  If you were me would you go for the CT?

Thanks again Becky.  I truly wish you well in every way.

Robyn

[Tybear]

To be honest, the CA125 test is really not a good test to diagnose ovarian cancer, especially in pre-menopausal women. There are some ladies on here who had numbers in the hundreds and it wasn't cancer and then you have others, like myself, who had somewhat "normal" numbers, and it was cancer. Mine was 46 when I was diagnosed stage 3c...go figure. Of course I had other symptoms that tipped me off that something was wrong and I didn't just go by that number.
My only thought would be if the number doubles or triples say, every two or three months...how often do you have that test done?
Most women use the CA125 test to track thier progress through chemo...if they had a very large number before surgery and then it dropped dramatically after surgery, they track it all through chemo to see if it's working. If the number decreases, they're on the right path. If it increases, then chemo most likely isn't as effective as thier dotcor's would have hoped for.
I don't know what to tell you...please talk to your doctor about your concerns. Maybe they could have your trans/vaginal ultrasounds done more frequently and have your CA125 test done every three months or something.
The truth of the matter is, there is no "reliable" test available to diagnose ovarian cancer. The best you can do, knowing your history, is to be pro-active with your health...it sounds like your doing a really good job of that so far!
Take care,
Becky

[RobynLee]

Thanks much Becky.
I am thinking it may be time to take out the polyp (it's there for 2 years that we've been following it) since it has more than doubled in size. Perhaps it is effecting the CA125.
The doctors are quite concerned and seem to feel I should consider complete hysterectomy.  I'd like to put it off till menopause passes - but if the CA125 stays elevated I may not have such options.  Do you know if it were ovarian cancer lurking...would the CA125 soon escalate.  Is it any consoloation if it stays around the same level (45) for 6 months + as opposed to continuing to rise?  

Again thanks for your support!
Robyn

[Tybear]

Well, first off, congrats to you on 8 years of survival - that's great!
There are many things that can elevate a CA125 other than ovarian cancer - endometriosis, ovulation, any sort of infection or inflamation can all cause it to increase. It sounds like you are recieving great care though, with your doctor doing a trans/vaginal ultrasound...I would imagine that they'll just keep an eye on your polyp for now. I would be tempted to ask him, at what point would they be concerned with your CA125? Knowing your prior health history, I would like to think they'll keep close tabs on you, closer than they would with most women who do not already have a history of cancer.
I would think that yes, a polyp that size could contibute to your excessive cramping, but you should consult your doctor about it. Maybe they could remove it?

Sorry I couldn't be more help!
Take care,
Becky