GCT recurrence based in inhibin levels

I was diagnosed with GCT a while ago and have had a TAH BSO for this reason. Last January I was diagnosed with DCIS and underwent a unilateral mastectomy. I now see my oncologist every four months. I had a discussion with him today that made me wonder if I was getting accurate treatment. I asked for him to draw my inhibins again because they keep rising and in January my inhibin B was up to 79. It's my understanding that in a postmenopausal woman, that level should be undetectable. He said that he would order them because I asked, but he doesn't have a lot of faith in following tumor markers. We had a similar discussion in January, and he said that when my level reaches 100 then I should see a gynecologic oncologist at Baystate. In his defense, he has only seen one other GCT case in his whole career, but should I be concerned, and maybe getting a second opinion? I am worried because it feels like the care I'm receiving is simply waiting for the numbers to go up and for the cancer to form another tumor. Any advice would be helpful. Thanks

[Annekathryn Goodman, M.D.]

Hi there
you should absolutely be followed by a gynecologic oncologist for your granulosa cell tumor

you should also have an estradiol level checked
it is possible that if you have a recurrent granulosa cell tumor, elevated estrogen could be a cause of your DCIS of the breast

are you on tamoxifen?

inhibin is a sensitive measure of granulosa cell tumor recurrence

you need a CT scan of your abdomen

please let us know how things are going
take care

[TammyStP]

Thankyou for your input. Inhibin A was up to 5.7 and Inhibin B was up to 146. I see Dr. Myers at Baystate on Thursday morning. I imagine that she will order a scan for me at that time. I will ask her about the estradiol too. I am not on tamoxifan (tamoxifen) because my oncologist said that it is not for postmenopausal women. The alternative was offered, but I declined. For me the side effects were not worth it. Thanks again for your input. I will be in touch at the end of the week. ~Tammy

[TammyStP]

Hi there,
Results of the Ct scan show that I have 4 new masses.

"Bilateral pelvic masses are seen. An ovoid mass in the right adnexal region measuring  2.8x1.8cm in size. Platelike region of soft tissue superior and slightly left lateral to the urinary bladder measuring 2x4cm. Ovoid herterogeneous mass medial to the left external ileac vessels measures 1.8x2.7cm. 2x2.2cm mass anterior and lateral to the inferior left psoas muscle."

I see Dr. Myers again on Thursday to discuss my options, which we already know includes another "debulking" surgery and the possibility of needing a bladder resection.

I'm glad that I stuck to my guns and went somewhere else! Hopefully this is something that can be done at Baystate... otherwise I will have to go to Boston or Dana Farber. I guess I'll just have to wait and see.