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Frustrated, but hopeful

kmichae2
Posts: 2
Joined: Sep 2011

Hi Ladies, I really need some advice/guidance/suggestions...

I was diagnosed w/micropapillary serous carcinoma 3C in 9/11, finished chemo just this past February 2013 (I was part of a clinical trial of Avastin,  that's the reason it went on for so long) My CA 125 did get down to 9 but started creeping up since past December, but my last jump was a big one, more than double and it's now higher than it was before my surgery so my oncologist said we'd likely start chemo again in the fall.  (I had reached what they considered remission) So I went about my life because this summer has been crazy busy. I was upnorth with my daughter for her softball tournament and developed severe, and I mean 8-9 pain level, abdominal pain in the upper left side, at one point I was very close to passing out. Another parent took me to the ER and I had a multitude of tests...here's the crazy part...I told them I had recently been told I was in recurrence for OC - this was about a month after my last CA125. One of the tests was a CT and they did not see ANY cancer!!  (that's the hopeful part)  The only test that was abnormal was the blood test for my pancreas and since they found nothing else they decided it must be pancreatitis. This last a few weeks and I was better, not pain free, but better for about 3 weeks. Then BAM same pain, right side, brought me to tears,  now they decide it's probably gallbladder, but again all tests have been normal - Im having a HIDASCAN on Friday though, but I'm thinking it will be normal as well.  So I'm very frustrated but taking the fact that they saw nothing on the CT as a good thing.

Have any of you experienced this abdominal pain that they can't explain?  I've heard adhesions/scar tissue may cause pain like this.  Can that cause your CA125 to rise?

I'd very much welcome and thoughts and or suggestions. 

Thanks tons for listening.

Kim

mopar
Posts: 1954
Joined: Apr 2003

And congratulations on your remission!  I still stay you are in remission until you find out otherwise.  The rise in CA125 could very well be other issues, such as the possible pancreatitis, even an infection.  But I will say that, like you, I get concerned about any abdominal/pelvic pain - it just comes with having been a cancer patient.  I had pointed out random pains to my doctor, none with any definitive clues.  He told me that scar tissue (adhesions) can cause these pains.  My doctor even checked out my gall bladder at one time because I also had terrible pain in that area.  Nothing showed up. 

Please let us know what you find out.  In the meantime, hold the good thoughts.  Sending Prayers and Hugs your way!

Monika

 

mamajc
Posts: 22
Joined: Jun 2013

Hi Kim, I am so sorry you are having some abdominal pain. I had a friend with ovarian cancer whose Ca 125 started going up but had a negative cat scan. She had a PET scan and they were able to identify new tumors. She was told that it takes about 3 months for smaller mets to show up on a  catscan. Maybe it would be a good idea to ask for one. They are more expensive than catscans... but with elevated pancreatic enzymes, maybe it would be helpful.

They put her on avastin and gemzar and after a couple months of chemo, she is back in remission. She has clear cell ovarian cancer.

Joan

lovesanimals's picture
lovesanimals
Posts: 1285
Joined: Sep 2011

I'm so sorry you've been experiencing such severe pain.  Adhesions can certainly be a possible cause and it's possible that the pancreatitis is causing your CA 125 to rise.  I'm not familiar with the type of test you're getting on Friday, but please let us know how it goes.

Sending lots of good thoughts and prayers your way!

Kelly

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