PETscan shows no improvement

BonnieR said:

NO Pets Here
Hi Nancy,

So many decisions in this journey. I would think only three doses of doxil was not enough to make much of difference but we are each different. My doc doesn't do pet/cts, just ct scans and believes they are not really accurate for ovarian cancer. Although he has let me have 2 of them in the past seven years. :-) I know for me the doxil worked way better then gemzar and was easier on my body, but it does take a few doses for it to work. I think my ca125 continued to rise the first two months and then started to slowly go down. What is your ca125 doing? Sending you lots of prayers for clarity on the next step, and for your medical team.

Hugs ♥ Prayers Bonnie

lindaprocopio said:

PET vs CT
Since my recurrence I was given the combo CT/PET scan, but my oncologist has always been very wary of PET scans. He says that false POSITIVES are very common for tumors less than 1 cm. (False NEGATIVES are very UNcommon, so you can feel confident about a clear PET when blessed with one!) PETs are quite accurate with larger tumors; it's the little things that light up that may not be cancer at all. The advantage is that a problem can be flagged sooner with a PET-scan. But I know quite a few women that had little lymph nodes light up on a PET-scan, had surgery for biopsy, and got the happy news that the node was benign. (But they had surgery for nothing.)

I know I read a study that said that initiating chemo on a tumor that is still too small to be visible on a CT-scan does nothing to prolong life when compared to waiting until it is visible on a CT-scan. That is hard for me to accept, and I did just take 10 rounds of taxol based on a PET-scan that could not be safely confirmed by biopsy. I think the BEST test is the combo CT/PET where both imaging is done back-to-back on the same machine, and one laid atop the other for diagnosis. The combo CT/PET gives off much less radiation than a CT-scan alone, but not every cancer center has that machine (I had mine in a 'mobile' trailer that id taken from site to site and shared.) And not everyone's insurance will pay for that costly test.

lindaprocopio said:

My chemo-onc won't do maintenance chemo either.
I was given weekly taxol because my oncologists were 95% sure I had a recurrance (based on a hard spike in CA-125 and a lit-up PET scan). Originally it was just to 'hold' me until after the holidays, but it turned out to be fairly effective in lowering my CA-125 (which dropped 100 points on the single agent taxol), so we stayed with it 10 rounds. I just started a chemo break, as my CT/PET scan was clear, even though my CA-125 is still at 42.5.

I believe that carbo/taxol will be my next line of chemo when (if!!) I recur again; followed by Doxil. But I think that single agent taxol is something I could go back to again later on. Sloan Kettering is AMAZING! You are so fortunate to be treated there! I would trust them completely.

lindaprocopio said:

Nancy: I recurred 8 months since last carbo/taxol chemo.
Nancy, I don't have ovarian cancer, but instead a rare form of aggressive recurrent uterine cancer that mimics papillary serous ovarian cancer in prognosis and treatment. And, actually, the prognosis for my cancer is even a bit worse than ovarian cancer at a similar stage. So, although I finished chemo March 26, 2009; I had 28 rounds of external pelvic radiation and 3 internal vaginal brachys after my chemo as a part of my initial treatment protocol. So, although my first remission was only 5 months, it had been 8 months since I;d had chemo when I started taking the single agent taxol for my recurrance.

So my experience may not be 100% pertinent to your decisions. I know that my gyn-onc felt that I should start carbo/taxol again right after my recurrance, but my chemo-onc likes to have at least a year in between re-using carboplatin. My CA-125 jumped from 11 to 155 to signal my recurrance, and the single agent taxol got it down to the mid-40's where it got stuck for the last 6 rounds.