Granulosa Cell Tumour Research Foundation

We present here a selection of questions we have been asked. We are not qualified to make treatment recommendations but we do research literature to provide a summary of published findings about a question.

If you don’t find an answer to your question here, use the form at the bottom of this page to send it to us and we will try to answer it.

Does pregnancy pose a greater risk for recurrence of GCT than not getting pregnant?

We have not found any research that states pregnancy following a diagnosis of GCT increases the risk of recurrence. A couple important caveats to this are: 1) that we are discussing a normal pregnancy, not one following fertility treatments, and 2) the original diagnosis was not advanced-stage disease. It has also been reported that in the cases where there was recurrence, there is no significant difference in disease free survival between women who have fertility-sparing surgery at time of initial surgery, and those who opt for more radical surgery.

My Dr. will not test AMH, how can I convince him to do this? He keeps telling me my insurance might not cover it and the test will be +/- $500.

If you go to our website under Resources>Inhibin testing, you will see a letter from a clinical group that deals with many GCT cases every year. They document reasons for their recommendation that AMH and Inhibin B be followed for GCT patients.

As far as the cost, we do not know what the current cost is, but $500 seems high given that Inhibin B costs only ~$100 USD from Arup Labs in Utah. We believe that for AMH they forward samples to Women & Infants Hospital in Rhode Island.

What treatment is being recommended if you are positive for the FOXL2 gene mutation?

Virtually all cases of adult GCT carry the FOXL2 mutation, but it is not something that can be targeted with a treatment. Part of the problem is that since it was just discovered in 2009, scientists still do not completely understand how it is contributing to development of GCT. For the time being, the FOXL2 is most useful as a means for pathologists to definitively classify someone’s cancer as adult GCT.

When you have stage 1a GCT is there less chance of recurrence?

In general, there is less likelihood of recurrence with stage 1a GCT. It is important, however, that the same schedule for follow-up with a gynecologic oncologist is observed for the long term. While not statistically frequent, recurrences have happened with stage 1a disease.

What is the normal level for inhibin in post-menopausal women?

Inhibin (typically inhibin B) should be <10 pg/mL in menopausal women (see Mayo Clinic guidelines).  It is used as a marker for recurrent disease because inhibin is generated by granulosa cells (and thus GCT) but how much it should increase before a clinician is concerned about recurrence is not uniform.  Inhibin production by GCT will be different from one woman to the next.  So there is no set value that you can use as a guide for indicating recurrence, but if it is rising sharply through consecutive tests then it might indicate GCT is present.