1c granulosa cell tumor

[evolene]

any long term survivors on this site thank you

[Dolcie]

Hi ive got and had Granulosa cell carcinoma since 2011 but they think it does originally go back to 1998 !

[Dickturpinretired]

My wife was diagnosed with a granulosa tumour in the middle of 2014. Very sadly she has recently died. I have read a lot about these tumours. Because they are rare there is not immense amounts of research. They are not yet curable but many do not recur for many years. They are quite unpredictable. My wife had an aggressive form of the tumour and this was known when first diagnosed. The first line of defence is surgery and if they recur in one place further surgery may be done. If they recur and have already spread surgery is not possible. In those cases there are a couple of chemo options and also some hormonal drugs that can be used. Sadly my wife had a bad reaction to both sorts of chemo and they only reduced the size of the tumours-not eradicated them. She tried three kinds of hormonal drugs but none worked for long. However her experience will not be the same as yours. You could ask your doctor if they think you have an aggressive form of granulosa. I know from what I have read that it is positive that your granulosa has been identified before it has spread. Women have gone as long as 30 years before recurrence. You will now have regular check ups for the rest of your life with blood tests to check for markers in your blood that can indicate whether the disease is returning. Our experience was that this is a roller coaster ride. Anxiety never completely goes but it is possible to live with this and enjoy life. There is a research centre based in new zealand. Www.gctf.org.nz and a Web based support group gct survivor sisters . I wish you the best of luck for the future.

[Howick01]

My friend who is not on this site is a long term survivor-10 years plus.

She had ovaries removed with no chemo.

She had her uterus removed last year but not because of cancer.

She is 57 years old now.

Take care x

[teebow]

I actually belong to a Facebook page that is dedicated to GCT. It has many members with varying histories. If you're interested, message me and I'll give you more information. It is a tremendous resource for those of us who have it. 😊

[Di16]

I was diagnosed with GCT, also stage 1 c, 9 years ago. Unfortunately it has recurred, & I'm due more treatment, but I'm still a survivor

[lorenz1947 in reply to Di16]

How big was your first tumor? Did you do chemo the first time? If so, what type?

[Anne-2]

Hi!

I had a diagnosis of a GCT about 6 years ago and no reoccurrence to date. It does seem in the main to reoccur many, many years afterwards.

try to stay strong-nits a shock isn't it?

Love

Anne xx

[lorenz1947]

Did you do any treatment? What stage were yoU?

[Di16]

I was stage 1c at diagnosis and had surgery to remove tumour plus total hysterectomy and they also removed my ovaries and omentum. I then had 3 recurrences treated by removal of the tumour. The third time, my cancer spread straightaway. I was told no more surgery, so they tried 3 different types of chemo and 4 different types of hormone therapy. Then they sought a second opinion, and I had more surgery to remove all the tumours at a different hospital. Di

[lorenz1947 in reply to Di16]

Thanks for info. Hope all is well. Do you recall how big your initial tumor was?

[Di16]

I am well, thank you. My initial tumour was 18 cm. Di

[lorenz1947 in reply to Di16]

Hi. Did you have BEP chemo? Did you try Femara/Letrozole? I am stage 1C and they are recommending BEP.

[Di16]

I haven't had either of those. I've had 3types of chemo - carboplatin, then weekly taxol. The last one was caelyx. I also tried 4 types of hormone therapy - Arimidex (Anastrazole), Exemestane, Tamoxifen, and Zoladex. Di