I have had GCT 6 times in the past 10 years. I have had been treated with chemo, and Avastin but keeps coming back. So tired of fighting

[jdavis]

This crap! Anybody else have this many reoccurrences? Feeling a little discouraged. Everytime I have surgery it takes longer and longer to heal. I have pain from a lot from all the scar tissue. Just hoping to connect with someone else who's had many reoccurances.

[jennybutler]

Gosh I know how you feel I have only had 1x operation and 6x carboplatin came back after 18months. Finished 6x Paxi/taxol/ carbo in July back by the end of November but seems stable and not having chemo. for as long as can be put off, seems the usual pattern. I have a big family who want me to keep fighting and I will for them, sure thats why we all go through this roundabout. I am sure you will get through this again chin up girl do not let the bugger get you down easy to say but do try.

Love and big hugs Jenny xxxxx

[jdavis in reply to jennybutler]

Thanks Jenny for your words of encouragement, it so helps to know we are not alone in this fight!

BIG HUGS Julie

[francescahannah]

I was diagnosed 10 years ago this June and have had many recurrences. I've only had surgery at the beginning and am now on my fifth line of chemo. I also had radiotherapy on first relapse but didn't work for long. I've never had avastin. At times during the last couple of years I've been really tired of fighting but somehow my desire for life comes through. I've been lucky add it's more or less stayed in my abdomen and i've been well and really enjoyed life between treatments. I live in Manchester and have treatment at the Christie.

[jdavis in reply to francescahannah]

Its crazy how peoples bodies react different to different treatment but we seem to all have the same health issues. My cancer has also stayed in my abdomen. My body hasn't responded to any chemo/Avastin treatments so all they can due at a recurrence is surgery. Thanks for your Post!

Julie

[Hidden]

Just sending you my best wishes.... there are many of us that have had more than one recurrence and yes treatment is very exhausting ... I am sorry that you are in a lot of pain too...your post suggests that you have also had a lot of surgery which surprises me... as there is not a lot of repeat surgery done for ovarian cancer unless it is for other problems

i.e. a hernia or adhesions etc.

I am sorry but I don't mean to seem dim but what does GCT stand for ?

Thinking of you love x G x

[jdavis in reply to Hidden]

Thanks Gwen for posting. I have had 7 surgeries one of which was a hernia repair. I have had all my care from Seattle's Cancer Care Alliance. I for whatever reason haven't responded to the different treatments my oncologist has tried, so surgery it has been.

I wish you the best of luck with your health!

Loves and hugs, Julie

[Di16]

I have GCT (granulosa cell tumours) too. I've been told more surgery is usual with GCTs when they recur. I am on my 4th recurrence. I was first diagnosed 6 years ago, and had surgery then. I have had 3 further operations to remove recurrent tumours from my pelvis. The last was January last year. By Easter last year, a check scan showed tumours in my abdomen. As it recurred so quickly, I went on a trial with Arimidex for 6 months, which didn't work for me. I have now just finished my first course of chemo - have a scan at the end of this week. Although I haven't had quite as many recurrences as you, & haven't been fighting quite as long, I can understand you feeling discouraged. I get fed up with it coming back, & lately the effects of chemo have been getting me down at times. But I'm fighting on. I sometimes also feel quite alone having such a rare type of OC, & have been wondering if there is anyone else on this site with the same problem. I now know I'm not the only one, and wish you well.

Di

[Hidden in reply to Di16]

Dear Di,

Thank you for explaining what GCT is, (sorry it seems obvious now you've explained) I didn't know that you are given more operations with this type.

Thinking of you and best wishes love x G x

[jdavis in reply to Di16]

I'm so happy I have found this site with all these wonderful survivors! This is actually the first time I haven't felt alone. Thank you for your post Di!

Julie

[Anne-2]

Hi!

I was diagnosed with a GCT nearly three years ago post-op and was told at the time that chemo would not be of any benefit to me as this particular tumour is chemo resistant.

Fortunately, I have not, so far, had a reoccurrence and was actually told that it may be 20 or 30 years before it might manifest again.

I'm so sorry that you have been less fortunate and hope you feel a lot better soon.

Love

Anne

[Di16 in reply to Anne-2]

I was also told initially that it would probably be 20 years before it recurred, & that chemo would not be of any benefit. I am one of the unfortunate ones in having first recurred after only 2 years. When I was told last year that surgery was not now appropriate, the oncologists were willing to try alternative treatments. A trial with Arimidex tablets (one of the breast cancer tablets being trialled with some OC patients) didn't work for me. I was then offered chemo. I was told that there was some chance of it helping now that the tumours are growing more quickly, but they are not expecting a brilliant result, and warned me it may still not do any good.. If it has some chance of helping I agreed to try.

Glad you are still well.

Di. .

[Hilsuk]

Hi Di - i had agressive ( v.high mitotic index) GCT 2 yrs ago and was told that treatment options are really mainly repeated surgery -as you know it tends not to respond well to chemo-know what you mean about rareness and feeling isolated. I found the granulosa cell tumour foundation of new zealand (GCTF )really helpful and they have a patient forum too thats very supportive _sure you've already found them . Unfortunately 18m later I was diagnosed with high grade agressive primary peritoneal cancer -its incredibly rare to get both ( dont panic! ) and this was inoperable but has gone ( for now ) with chemo . Might be worth them checking your ca 125 from time to time as well as your inhibin levels. Keep fighting girl - thats what we have to do ..... believe tamoxifen , arimedex/letrazole may help as reduce oestrogen levels -take care xx

[Di16 in reply to Hilsuk]

Hi, thanks for your comments. I hadn't found GCTF, will have to look it up. I have had CA 125 checks. A few weeks ago it was still down in single figures. I spent 6 months on a Paragon trial, taking Arimedex, & it did bring the inhibin levels down, but unfortunately it didn't stop all the tumours growing, & I was told I could only have remained on the trial if there had been no further growth. So chemo has now been tried. I have my end of treatment scan on Saturday, and see the oncologist next week to see the results, & discuss what might happen next. I'm glad your primary peritoneal cancer has responded to chemo, & hope you have a long period free of it. Di.

[Chilie57]

Hello Jdavis

I was diagnosed with GCT on 1-20-14. I had a complete hysterectomy. I will support u to get through this as I will need ur support as well. You are not alone !! My battle is just beginning . Lean on me.

When ur feel low remember this

Never under estimate the power of a single act of kindness to make a significant difference in someone's life ! Your act may just be the added lift that someone needed to go from Faling to Flying !!!!

Take Care

[Virginia149]

I have had recurances so many times I can't remember. First time in '94. Recurrence in 2000. Been dealing with it ever since. Have good times and bad. I'm pretty tired of fighting it too!!

[gregc]

My wife has been fighting GCT for 16 years now. It comes back without fail it seems every 2 -3 years. Surgery/ cyber knife seems to be the method . I have been very involved in all aspects of her fight. Vigilance and not over reacting have helped her to live a normal happy life so far.