OVARIAN CANCER COMMUNITY
Anyone familar with AFP markers concerning immature teratoma?

Anyone familar with AFP markers concerning immature teratoma?

Hi everyone...I'm new to this community although I have been browsing here for information for some time. I'll give a brief rundown of my situation...I had a laparotomy surgery in late November to remove a huge (22 cm) ovarian cyst/tumor which turned out to be an immature teratoma, grade 3. I also lost my left ovary and 20 lymph nodes (which were biopsied and found to be clean) but thank God I didn't need a hysterectomy. !

   Since finding out the results in early January (apparently my oncologist had them for a MONTH and never notified me !! I gave him some hell about that but am still upset regarding it) I've talked to numerous doctors and had some additional testing done (triple CT scan, with and without contrast as ordered by my oncologist...who claimed it was "inconclusive"....the most useless $11,500 bill I've ever had) and recently had my blood markers run for comparison to the post surgery bloodwork that was done while I was in the hospital. I've also been told to get a PET scan but have yet to do so.

   According to my oncologist as well as my surgeon, the teratoma gives off markers, which is a good thing and can be used as a monitoring tool. These are CA 125 and AFP. After receiving these results I am going in for a consult with another oncologist Tuesday...but the general consensus when I ask a Dr. about them and what they mean, is that since immature teratoma is so rare (and most haven't dealt firsthand with a case) they can't say or really give me any information or advice.

   Except of course, to do chemotherapy, BEP. I've heard this from day one and am frankly very frustrated by it...if at all possible I want to avoid it, besides the side effects during and after, I can't find consistent information and evidence that indicates it's even necessary. I've been reading studies on whether chemo is necessary after surgery...which contained subjects who had grades 1-3 immature teratomas...and it appears that surgery and close monitoring is enough for the majority of these patients.

But anyway, my question is for anyone who might possibly have knowledge of or has dealt with immature teratoma...or is familar with AFP levels. Here are what mine were right after surgery in late November, and what they are now ~

Two days after surgery, 11/22/08

AFP Tumor - 236.8 (normal range 0.0 - 9.0)
CA 125 - 573.2 (normal range 0.0 - 35.0)

Results from bloodwork 2/14/09

AFP Tumor - 131.2 (still high)
CA 125 - 10.7 (within range)

   My main questions are about the AFP levels and how quickly they drop or rise...does it take weeks? Months? Should a normal AFP be much lower than this after my surgery, considering how much time has gone by? If I were to monitor this as opposed to chemo right away, how often might I be checking these markers?

I am sorry this is so long...wanted to provide some background along with the question. Thanks to everyone who takes the time to read and/or answer.

Carolyn
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