Granulosa cell tumour

Hi Ladies,

I'm an American 34 year old woman who was diagnosed with granulosa cell tumor about two weeks ago. Are either or you still active on this board? It is hard to find others as you have mentioned and it is also hard to find women my age. 

Hope to hear from you

Hi ladies

I'm a Granulosa Cell Tumour Survivor of three years four months.  There are many survivors out there of all ages and from all over the world.  I have found great support from a group of women who have formed their own support page.  Unfortunately Macmillan have removed my link, in their wisdom.

I think this is a terrible shame as support for Granulosa Cell Tumour Survivors is sadly lacking from Macmillan and the other cancer support groups.

[Edited by admin]

I feel so annoyed that they removed my link, that I have posted it again.  It's a closed group and you have to apply to join.  I'm sure Macmillan will remove this again but someone might see it before it goes.

Hello KitKat 

I think you can safely say it's a rare one to have, so you are definitely not the common or garden type! There are a few of us out there, though, so keep searching, it's comforting to find others that are in the same club when you are first diagnosed. I hope you have someone close to help you through this? 

it's a time to gather as much information as you can, without getting too lost in the detail, and then using the information to try to make you feel a bit more in control of things and being able to check that what you are being told at hospital etc is right. Up to you if you go to any of the support groups etc that might be on offer to you. I went to find out what was there, but haven't taken any of it up as I feel there are more people who need it than me. 

Im 53, so not quite in the same age bracket, but I am at the early stages of finding out like you, just a bit further down the line. 

My consultant reassured me that recurrence is rare, and warned me of the dangers of surfing the internet too wildly, which was good advice. I have taken him at his word and tried to get on with life, and have just had my first set of 3 monthly monitoring tests, which have all come back looking good! 

I have heard that the Facebook page is very good. I looked at some research in New Zealand, and a few entries across a variety of forums. Sadly I think there isn't too much being found out about it by experts as few people suffer from it comparatively, and there is therefore little demand for a cure, more research or information, meaning they also have little data. The best way to find out what little is known is from this kind of controlled forum where you can ask questions of those who actually have it. 

I had a full hysterectomy and was told chemo isn't necessary -  so I count myself lucky. I recovered relatively quickly as I had no cut, it was all taken out vaginally - doubly lucky, though I had nothing to warn me if I was lifting something too heavy! I have been really well since, and am back at work, and doing fine. I had a bit of a wobble emotionally around the time of my tests, but generally am doing really well, have a group of fab friends and am now trying to get fit, lose weight and have decided to stop eating red and cured meat, which many experts mention is a good move. otherwise I carry on as normal, whilst thanking my lucky stars I have had a warning to enjoy life more! 

Ask me anything you like, and I will try to answer you. I'm I would also say that the way you feel and the way you react is normal for you, don't let anyone tell you how you ought to feel or how you ought to react. Stick with positive people, find upbeat research and think healthy thoughts. Let me know if there's anything else I can help with, and hope to hear back soon, stay calm and gain knowledge! 

Yes ladies, the Facebook page is excellent.  It's supportive, the ladies are very well informed and it's very well moderated. 

Hi Ribera,

So happy to learn you are in remission! 

[Edited by admin]

Do you mind sharing any information about the treatment you had? I'm in Process of weighing first and second opinion and trying to choose my provider is confusing and hard decision. It's hard to feel confident when you feel like you don't understand everything. 

Thank you so much for replying to this. It is so helpful to hear from other folks dealing with the same disease. 

KitKat

Hi Lizziebet,

Thank you for such a nice post. It is great to hear from You and Ribera. Congrats on your blood test-what a wonderful milestone!

I have been doing as much reading as I can and have learned a lot. One of the things I'm reading about now is the sampling of lymphnodes as a part of the staging surgery. The risk of lymphedema is scary but may be necessary. 

My husband and I have been trying to conceive for nearly three years and have been working with a fertility doctor for about a year. So at least for now the oncologists aren't talking about hysterectomy. I know other young women have kept their reproductive organs and been fine but I do want to do everything I can. I have a second appointment with my oncologist tomorrow. I had a second opinion with another doc and luckily the recommendations weren't wildly different but I'm fretting about which one to go with. It's all very confusing. 

I'm lucky to have a wonderful husband and my mom, who is retired, has been coming with me to the different appointments and keeping me sane through everything. I also have some really great friends. I haven't told many people yet but those that I have told have been keeping my spirits up. 

It looks like chemo for me due to the tumor being cut open in my abdomen during surgery. But I'm very lucky other than that because it was caught early and I have a good prognosis on some of the other factors they look at. It's weird how it goes in and out of feeling real, feeling scary and so on. I'm grateful to have a couple other gals to talk to who understand.

KitKat

Unknown said:

Hi Ribera,

So happy to learn you are in remission! 

[Edited by admin]

Do you mind sharing any information about the treatment you had? I'm in Process of weighing first and second opinion and trying to choose my provider is confusing and hard decision. It's hard to feel confident when you feel like you don't understand everything. 

Thank you so much for replying to this. It is so helpful to hear from other folks dealing with the same disease. 

KitKat

[Edited by admin]

I had a full hysterectomy, including removal of ovaries, tubes, uterus, cervix and omentum.  It was open surgery so they could look around for other cancer.  I also had washings to check for cells.  I was diagnosed a 1c as I had cancer cells on the outside of the tumour, which was 6cm x 9cm.  Following surgery I had two CT scans and a mammogram.  I have regular blood tests, testing inhibin A & B, which is the most important one and also for LH, FSH and Oestradiol.

I hope this all helps.

I know of other younger women like yourself who have had surgery which preserves some of their organs.  Some of these ladies have gone on to have a baby.  There are ladies in America who share details of the best doctors to go to for GCT.  These ladies are very well informed on the latest research and treatments. 

Posts are private and cannot be seen by friends and family.  

There's more information on Granulosa Cell Tumour Cancer here:

http://www.gctf.org.nz

Hi Kitkat

So sorry to hear of your diagnosis.  There really isn't much info available about Granulosa Cell Turmours.  My understanding is that if diagnosed at stage 1 the only treatment required is surgery (in my case a full hysterectomy) as chemo doesn't work on this type of cancer.  With higher stages the treatment can be radiotherapy.  In younger women like yourself it's also possible to preserve one ovary so there's chance of conceiving.  The downside of GCT is that there is a chance it can come back at any time during your life.  This means that you will need regular blood tests (the ones Ribera mentioned) and CT scans.  This means that if it does return it will be diagnosed early.

As I'm not currently on Facebook, does anybody know if your 'friends' can see that you belong to the private GCT group? I only told a very small number of very close friends of my diagnosis as wouldn't want anybody else see I belonged to the group.