Granulosa tumor

[Barcelona]

I am 3 weeks post-op removing a large (18cm)tumor of my R ovary.  Intra-op findings were that the tumor was benign, but final pathology results confirm a granuloma ovarian tumor.  I am 35 and 18 weeks pregnant with our first child.  Does anyone have this type of tumor? I am told that only 1-2% of ovarian tumors are granulosa. My surgeon said that no chemo is required at this time but that I will have strict follow-up the rest of my life.  

Thanks!!

[cel0609]

hi, im cel from the Philippines. i am so  very eager to get any information about the granulosa tumor cancer because my sister is suffering from it. I want my sister to live longer. I love her very much!!!!
She feels very painful, im pity on her. Please help us!!! What shall we do to treat her and ease the pain she is suffering?
It was started 1999, she diagnosed for ovarian cancer, she was operated and removed her reproductive organs, complete hesteroctomy,
after 2 years, she undergone chemotherapy.
After 6 years, she had an infections and diagnosed that she had a
granulosa tumor cancer.
She was undergone another chemotherapy, but for 6 sessions of her treatment, she stopped for 2 sessions only because her body was very weak. For now she does not have any treatment, but only pain reliever.
This recent weeks, she become so weak. She is in pain, she cried and cried a lot. Im very affected for the pain she is suffering. Please help us.
Thanks

[Barcelona]

So how are you doing now?  16 years is a long time to "wait" for something to happen.  I just received my news yesterday, and I was ok at the tme, but today I am feeling pretty bad.  I was relieved after the surgery and ready to focus on the pregnancy, but now I feel overwhelmed,again!!! I have always been very healthy and strong and generally in control of my life.  Now I feel like I am sitting around waiting to start feeling bad to discover that there is a reoccurance.  What was your follow up routine for the last 16 years?  Do you have children?  Did you have them after the diagnosis or before?  Thanks for responding, and sorry for so many questions.  Cancer is one thing, and to have some weird, rare cancer makes me feel even more alone.  Thank God for the internet!!!!

Marissa

[scoutshadow]

Well I have to say I didn't 'wait' for a reocurrence to happen.  I didn't have kids then and was a bit of a mess in case it did come back and then the whole lot would go.  As it happened I had three children all conceived and born naturally.

I was told about 6 years ago that no further follow-up was needed as they had downgraded the tumour (or some ridiculous excuse like that).  So therefore I've not had any followup for the last six years.  In that time the tumour grew to 9cm - so pretty slow growing (it was seen on a date scan as a pedunculted fibroid when I was expecting my third child).  

NEVER again will I or anyone else take their eye off me.  However I'm pretty unstressed about it all now - if it happens it happens.  I have to say the last 6 years have been a blast - like a weight of my mind and I really don't want to go back to forever looking over my shoulder.  I'm going to live each day as it comes.  I'm quite surprised by my reaction as I thought I would be a nervous wreck.  Gladly that is not the case.

Please don't worry about this.  Take this time to enjoy your pregnancy.  Your post down below was one of a positive woman.  Keep those thoughts in your head and concentrate on the little kicks and the heartburn.

[scoutshadow]

I had a granulosa cell tumour removed 16 years ago when I was 29, I didn't have chemo either.  I was told it isn't effective with this type of tumour as surgery is usually the cure.  You need close follow-up treatment because the tumour can recurr very late, though statisically speaking this is less likely to happen.  Unfortunately I did reocurr this year and had a pedunculated tumour removed from my old scar site and it was resting on my bladder.  The good news was that there was no invasion of any vital organs and I didn't need chemo this time either.  It is a slow growing tumour so with close follow up it can be caught early.

You should check out ovca.net and also gctfnz.com (see post from sofinz further down).  The first one has a forum for those with this type of tumour and the latter has great access to medical information on the web as well as lovely jewelry you can buy to help fund further research.

This must be a stressful time for you especially with your pregnancy but please be assured that the doctors will keep a close eye on you.  Congratulations on your pregnancy and I hope that it progresses without any further complications.  Take care.