Granulosa cell tumour - chemo advice

[pachacuti]

Hi all,

I've recently been diagnosed with granulosa cell tumour, after a large 'cyst' was found on my left ovary. I had a full hysterectomy, omentectomy and during surgery my surgeon found a small nodule on the r.h. peritoneum. The histology has shown that this is granulosa cell tumour, and has been staged as 2b.

Surgeon was reasonably positive about GCT being treated by surgery, but wanted me to speak to oncologist. They have said it's a tricky one, as GCT can return - I can choose whether to have chemotherapy (paclitaxel and carboplatin every 3 weeks for 5 months) or not - they say it's so rare and doesn't always respond to chemo, that it's hard to say whether chemotherapy could actually help prevent a return or not. I'm feeling torn - worry that if I don't have chemo and it does come back, will I regret not trying it? Has anyone had any similar experiences with GCT and chemotherapy, any advice would be much appreciated! It doesn't sound as though there are any trials in the UK - is there anything else I should be considering?

I'd also be interested in any views on adjusting diet to combat GCT - have you made any changes which have helped?

Many thanks in advance for any help!

[Cumbrianlass5]

I am sorry I can give no advice on GCT but can tell you that the horror stories you read about chemotherapy are so often just scaremongering. I had carb/taxol chemo, as they are considering for you, and had a couple of poor days after each dose but then was really well for the rest of the 3 weeks to the next cycle. I would give yourself every chance that is available. They say the chemo might not work, but it hopefully will. I am so sorry you are going through this and that you have such a hard decision to make, but I do hope and pray all goes really well for you. I am at least glad they caught it at stage 2. All best wishes x

[Di16]

I have GCT. When it was diagnosed, I was told it doesn't respond well to chemo, & more surgery is the usual treatment if it recurs. I did have more surgery. Then there came a time when it had recurred, & the surgeon was reluctant to operate, referred me to oncologists for chemo to see if it would work for me. I was never offered chemo to prevent a recurrence. Carboplatin & Taxol didn't work very well, later I had Caelyx which didn't help at all. I've also had hormone blocker tablets, which did keep it stable for quite a while, & further surgery.I joined forums for ladies with GCT through facebook - GCT survivor sisters, a world wide group, very American in its approach because many of the members are from there, & UK GCT survivor sisters. A lot of ladies in these groups do seem to have chemo.

I can't tell you what would be right for you. For me, I have said yes to most of what has been suggested, as mine did recur, & I'm still here 13 1/2 years later. It is normal to worry at the beginning, but you learn to live with your diagnosis & get on with your life. I hope you make the decision that will be right for you.

Sorry this is a long post. There are others on here with GCT, so I hope someone else will reply.

[jmackmom]

Chemotherapy is also an assault on your body so you need to think about that. But after research I chose single agent Carboplatin for my 1a mucinous ovarian cancer with high grade cells. There is much research out there that shows that the single agent carboplatin is just as effective and much less toxic than the combination. It’s such a personal choice and I would never tell anyone what to choose but if they didn’t even think it would be effective I don’t think I would do it. Again, it’s a personal choice. Best of luck.

[delia2]

I have hgs OC so can’t give advice but my experience of carbo taxol was not like Cumbrianlass’s. Maybe because I am older? Was 69 at the time. I found the chemo devastated my body and I needed about 8 months to get my strength back and then I had a recurrence. Taxol causes neuropathy which is not always reversible. It’s a big decision. If you could take a maintenance drug of some kind it might help. It sounds like you’ve done research but I would keep at it. Good luck with your choice!

[Madmarilyn]

I ha e GCT too, and found the forums DI suggests an excellent source of information, as it is a rare form, and some doctors don’t really understand it. They are all extremely supportive, and I have found more comfort in knowledge and information from them than anywhere else. I’ve also had chemo twice, and although everyone is different, I’d say it’s do-able. I’d also suggest hats rather than wigs when you lose your hair, but again, it’s whatever suits you. You don’t mention your age, or if you know if you have adult or juvenile GCT. Mine is juvenile, but I’m 57! Be8ng diagnosed with cancer can be scary, but there is definitely comfort to be found in a community where everyone is in the same boat and happy to offer advice and support. Do join the Facebook groups, you don’t have to visit often, but the info and advice there is invaluable.

[pachacuti]

Thank you all for your replies, I really appreciate the time you have taken to write and your honesty and advice. I've the adult version, and I'm 43... I've just requested to join the Facebook groups you mentioned - as you say, when it's so rare, it's useful to have any info you can find. Thank you again for your thoughts xx

[Lovedogs41]

Hi there I would do your research thoroughly and go with your gut instinct.Chemo is extremely toxic to every cell in the body and can cause problems in the future.I would not choose to have it if there was little benefit.

[Nicky100]

I haven’t had this particular type so I wish I could help. If you need to chat about anything else or need support you can PM me xxx

[Artichoke78]

I have gct. They told me while surgery is the best option, bc my gct had spread a lot, that I should also do chemo. I recurred 1.5 years later, but I'm realizing that is part of this disease unfortunately. It's like fungus if your tumor ruptured or there was spillage.

[ClairePL]

Hi pashacuty,I am from USA,NJ, diagnosed with Adult Granulosa C., stage 1C2. Sloan Hospital in NYC (number one i cancer treatment) does not suggest chemo and I believe they don't even for your stage.(just surgery). Other places like in New Jersey suggest chemo for all stages after 1C , but truth is that they don't know if it helps. Hope that helps. You can request that they do some genetic testing on your tumor as there are some characteristics connected with the prediction of recurrence. Best

[Slorenz in reply to ClairePL]

I had stage 1C granulosa. Was offered BEP chemo which apparently is very toxic. I was so scared and in a state of panic but did a ton of research and found studies staying no proof chemo will prevent recurrence. So chose against it and had anxiety everyday if I did the right thing. I then went to Northsore in Chicago and they had me try letrozle. I did recurr in 5 years and then had another surgery, Was too afraid to be disabled from the chemo when nobody knew if it woudl help.