Granulosa Cell Tumor

I am 43 and have never had children.I had my right ovary and tube removed Feb 2005 and was diagnosed as stage 1 GCT. over the last year there was another growth that appeared on my left ovary which my oncologist has been watching that is now getting bigger (it held steady for about 10-12 months) so she is recommending to take out the other ovary, tube and uterus. I have been overweight (up and down) all my life and had irregular periods for 10+ years.

I don't have any pain or discomfort and my CA125 levels are very low.  Is there anything I can do to help things go away and prevent recurrence?  I have a great oncologist and she does't seem too worried-she just wants it out(I know she has seen much worse)  I guess I'm trying to figure out just how serious this is and what I need to ask the doctor?

What happens after they take everything out? Will I need hormones for the rest of my life? Does this mean that I won't be going through menopause or will it hit after the surgery? What can I expect?  I can't really talk to my family about this right now so links to any support groups would be appreciated as well!

Thanks!

[scoutshadow]

Hi
I had a granulosa cell tumour removed along with left ovary and fallopian tube 16 years ago.  It was large (16x14cm) but 2 weeks later further surgery was needed to remove a large haematoma and drain sites were installed.

I have just had surgery to remove a GCT tumour coming from the right drain site that was adhered to the bladder. This one was 9cm.

I am sorry to read that you have recurred so soon.  Have you had a test to determine FSH and oestrogen levels?  You could also be tested for inhibin.  Sometimes these tumours produce oestrogen which leads to breakthrough bleeding.  Conversely some tumours produce inhibin which blocks ovulation (I think).  You should get these tests before your operation so that you know what type of tumour this is.  Discuss this with the oncologist.

The cure for these tumours is often surgery. I'm sorry but I don't know of anyway to stop them growing or shrinking. It seems that your tumour has been caught at an early stage which is good. The best person to remove it is a gynae/onc.

With removal of all reproductive organs, you will go into surgical menopause.  If your periods are irregular then you may well have low oestrogen but you cannot determine this without a blood test.

You should get some form of hormone replacement therapy, as you are still young, and you should discuss this with your oncologist.

All the best to you.

[scoutshadow]

These are some forums and sites you might find useful.

www.gctf.org - can click to the New Zealand site from here.
www.gctf.org.nz - gives access to medline articles.
www.ovca.net - has its own granulosa cell tumour group.

Hope this helps!

[Sofi in NZ]

Kia Ora,

I want to invite all of you GCT survivors to visit our website (www.gctf.org.nz) to read our latest newsletter.

We are announcing a "world first", a database of medical histories specific to GCT that will serve as a very effective resource in the future for women who have questions about GCT recurrence, treatment options, side effects, etc.

As a reader of this discussion group you realise that often the best information about how to deal with GCT comes from other women who are dealing with it themselves since so few doctors have an extensive knowledge of the disease.

So our hope is that you, fellow GCT survivors, will contribute your medical history and that researchers will use that data in addition to their other tests as they focus on development of some targeted therapeutics.

WE DO NOT ASK FOR ANY PERSONAL INFORMATION, SIMPLY MEDICAL HISTORY DATA.

Once we have a reasonable number of submissions we will have a tool available from our website that you will personally be able query the database to answer questions that you may have.

I thank you immensely for your help with this huge project.  This will benefit all of us.

Sofi

Managing Director
Granulosa Cell Tumour Foundation NZ
www.gctf.org.nz