Anybodyo gone through chemo for stage 1C of GCT - My Ovacome

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Anybodyo gone through chemo for stage 1C of GCT

Ruqys profile image
13 Replies

I am 43 and has been diagnosed with GCT followed by total hysterectomy. Now the problem is histopathology says it is stage 1A and the surgeon said that there was a 2cm rent on posterior surface which make it 1C. They are confusedly suggesting chemo. Do anybody can help me out. Kindly guide me what to do out of your experience. If chemo is necessary which one is more effective. Tumour size was19cm with high mitotic index.

Thankyou

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Ruqys
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Lindaura profile image
Lindaura

Dear Ruqys,

So sorry you have to endure this situation at such a young age.

Yours is a very rare type of cancer and not many of us have had it.

Here is what I have found about it:

“Granulosa cell tumor of the ovary is a rare type of ovarian cancer that accounts for approximately 2% of all ovarian tumors. This type of tumor is known as a sex cord-stromal tumor and usually occurs in adults. Granulosa cell tumors of the ovary cause higher than normal levels of estrogen in a woman's body. The symptoms of this excess estrogen depend on the woman's menstrual status; the most common symptoms include early puberty for affected young girls, an increase in abdomen size or irregularities of menstrual cycles in premenopausal women, and abnormal uterine bleeding in postmenopausal women. The exact cause of granulosa cell tumors is unknown. Treatment consists of surgery to remove the tumor, and additional treatments may also be used depending on the extent of the tumor.[1]

Surgery is the first step of treating a granulosa cell tumor of the ovary and aims to remove as much of the tumor as possible. Additional treatments - such as radiation therapy, chemotherapy, or hormone therapy - may follow surgery depending on the severity and extent of the original tumor, or if the tumor regrows after surgery (a recurrence).

Last updated: 1/7/2016

I think it best if you trust your Oncologist. If they are suggesting Chemo, there is probably a reason for it.

Best wishes,

Laura

Ruqys profile image
Ruqys in reply to Lindaura

Thanks for the reply

Caroles1 profile image
Caroles1

Hi Hun,

Sorry you find yourself here,

Glad Laura has looked into the info for you, it just backs up what I am going to say.

I was Ic, had the op, then 6 months carbo/taxol, lucky enough to have it with a top expert in Harley Street due to insurance.

I am still here, nearly 5 years NED (never a boast), only to let our brave ladies it is possible.

My advice would be do the chemo, very do able, it gives you the best chance.

It’s what they are advising you to do,

Love,

Carole xx

Ruqys profile image
Ruqys in reply to Caroles1

Thankyou, your advice is my inspiration. I have seen many of we had gone trough carb/taxane but I am being suggested to go for BEP..

Madmarilyn profile image
Madmarilyn

Hi, so sorry you have this diagnosis. I would strongly suggest you join "GCT Survivor Sisters!" Group on Facebook - a huge amount of detailed info from direct experience of this rare cancer. I did, after I was diagnosed with GCT two years ago, and have learnt enough to challenge my oncologist when I feel it necessary. I had a hysterectomy when it was discovered, sadly recurred and had further laparoscopic surgery before being referred to a specialist in London. I tried drugs, then more radical surgery ( I recurred again but you might not!) followed by chemo at that point (Cabo/taxol, which is kinder than BEP) and am now on Letrozole with Metformin. I wish you much luck with this, but urge you to become as informed as you can be. That will help you make the decision that is right for you. Xxx

Ge0rg1na profile image
Ge0rg1na

Hi

Sorry you are having to go through this but you were right to come to this forum for support.

I have a different cancer but diagnosed stage 1c in 2010 and then had a hysterectomy followed by carboplatin chemotherapy. I'm still here but have had many operations and chemo regimes along the way but as I mentioned, it's a different cancer. But go for it and believe it is doing you good. Hope all goes well, Gina x

Ruqys profile image
Ruqys in reply to Ge0rg1na

Thanks for your reply. Best wishes

Di16 profile image
Di16

I also have GCT, diagnosed 11 years ago, 18 cm tumour, ic at the time as there were a few cancer cells in some fluid in my abdomen. I was told at the time I didn't need chemo. I have recurred since, & have had more surgery, chemo, & hormone blockers. Like Marilyn, I'm currently taking Letrozole.

One of my oncology team told me some time ago that a cause has been found to GCT. It is linked with a gene mutation on gene FOXL2, not an inherited problem like the more common brca, but something that will have happened in my body, not passed on to me by my parents, & I can't pass it on to my daughters & granddaughters. I read a document some time ago on the web site of the gct research foundation of New Zealand. It was called GCT for Dummies, & gave a lot of info.

I'm afraid I can't tell you which treatment will be most effective for you, we are all different. Di

Ruqys profile image
Ruqys in reply to Di16

Lot of thanks for responding. I am confused between BEP and carb/taxol

Craftyclara profile image
Craftyclara

Hello. I would definitely trust your surgeon and go with Chemo. I had 1C Mucinous ovarian at age 46 and they recommended chemo to ensure nothing was lurking after surgery as my 26cm tumour had started to rupture. Although it is scary to think of chemo you will get through it. Good luck and sending lots of healing wishes. I am 3 years clear and so glad I did the chemo. I had carboplatin and paclitaxel but understand things have progressed since I went through treatment. I also used the cold cap and it was most effective. X

Ruqys profile image
Ruqys

Thank you for replying, I have decided to go for it

Madmarilyn profile image
Madmarilyn

Good luck, it's not as bad as you might think! I was told by the oncologist that it's not cumulative, and that the first round is as bad as it gets on the every three week treatment, as your body has the chance to get rid of most of it before the next round. Will you be every three weeks? Tip: take all the extra anti-nausea tablets they give you, don't save them as I tried to do the first time! I also shaved my head in anticipation, as your hair follicles can hurt as it falls out, and I bought bright coloured hats (try Anna Bandana website, but there are others) to coordinate with my clothes, but didn't bother with a wig at all. Then I carried a small box of cheesy biscuits to make sure I always had something to nibble on, which helped me not feel nauseous at all, as well as a spare pair of knickers and wet wipes in the car in case of accidents....never used, but very reassuring! I also carried a small anti-bac gel everywhere, esp to the supermarket, made sure friends knew to stay away from me if they had a cold etc., and actually managed to sail through it. I learnt to use makeup to make me feel good, and wish you luck - let us know how you get on!

ClairePL profile image
ClairePL

Hi Ruqys,I am new and sow your post with your diagnose-which is the same as mine. I just got surgery the end of October and waiting for chemotherapy. Will do a second opinion but I am so scared and really don't know much a lot about what is the best option. How are you doing?How has everything gone for you? I am 47. Thank you

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