Adult granulosa cell tumor and HRT

Hi JenC_aGCT and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

While you're waiting for replies, it would be great if you could put something about your diagnosis and proposed treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Hi JenC-aGCT

Welcome to the Ovarian group. I am sorry to hear of your cancer. I hope that you are beginning to recover from your hysterectomy last week.

My own cancer was endometrial but I also had a full hysterectomy with ovaries, tubes etc. 

HRT was mentioned to me but I was told that it was best to wait until my post op results came back. When they did it confirmed that my cancer was oestrogen and progesterone positive. It meant that if I did take HRT after the surgery it could mean a recurrence would be more likely as the hormones could potentially feed a new cancer. However I was also told that it was a very much risk vs benefit decision and individual to each person. 

If I did have it then low dose patches would be a better option but also that it would be better not to take unopposed oestrogen. 

I decided not to and see how I got on. I do however take vitamin D and calcium for bone health after discussing the benefits with my CNS.

Jane

Hey there,

First of all sorry to hear about your current health. My gf is currently recovering from a surgery following a reoccurence of juvenile granulosa cell tumour and is actually starting chemo today. She also had a hysterectomy as well as a removal of the omentum and some peritronem stripping to remove all cancer.

Anyway. Her current treatment plan is that after chemo she's going to go on letrozole which is a hormone suppressant. We've seen before diagnosis that when we tried hormone therapy before such as nortithisterone (which is a progesterone synthetic hormone), her symptoms worsened. Which probably made the cancer spiral into a later stage at diagnosis. The hope this time is that lowering hormones will reduce reoccurence risk. We also saw that with each occurence there was a hightened level of estrogen such as polyps, thickened lining, prolonged heavy periods ect. So it's clear this thing is secreting estrogen.

The theory many oncologist have is that yes these cancers can secrete hormones, but many of them also have hormonal receptors, meaning they also respond to hormones. So what happens is this kind of feedback loop. They create the hormones they need to fuel itself. However, they cant create estrogen from nothing. They need something called aromatase (the process of converting adrogens to estrogen) to create that estrogen, which is where aromatase inhibitors such as letrozole should theoretically supress that from happening.

However, some juvenile gct have shown that can they secrete things other hormones other than estrogen, so maybe the same can be said for adult gct ? Every cancer is different. But I have seen some agct cases that have responded positively to hormone suppression.

So personally I would explore all of this with your oncologist and bring up any fears you may have. He may have good reasoning for his decision ie having tested your specific cancer for things like receptors or the FOXL2 mutation.

All the best to you,

Wendy

PS - sorry if I got too 'sciency'. GCT is rare and juvenile even rarer so I did alot of digging for any infomation.