granulosa cell tumor recurrent

http://www.gctf.org.nz/         here is the right link!  It's a foundation dedicated ONLY to GCT.  Read about the founder, she died of GCT so her husband is carrying on the research!  YOU can trust what this site says.

Hope it helps,

Lori

On Jun 25, 2008 12:00 AM greenasagourd wrote:

Hi all.  Another GCT survivor here.  You can read a little more about my experience under the thread "Granulosa".

I feel for all of you having recurrence of this cancer.  Knowing its rarity, it must be difficult to know the best treatments.  I'm praying that you can find the right answers for your situation.

I do have a couple of questions.  My entire reproductive system was surgically removed after GCT was found on one ovary.  I was told that by taking the entire repro system the most likely place for it to recur was gone.  So far, so good for me.  How about you?  Did you have your entire repro system removed upon diagnosis or just the cancerous ovary?

Also, have any of you had other cancers?  I'm now having some breast cancer issues.

Hi Green,

I had only my left ovary and tube removed initially.  Then when it returned, it didn't go to any of my reproductive organs... it came back in the peritoneal of my abdomen!  And spread seedlings throughout my body.  

Just something to think about.

Lori

hi lori,

how many time debulking surgeries hv u had? what did ur doctor do when it spread throughout ur body?

mine is all over my body too, i had 3 time debulking, but surgeon said too many this time he can not do it.

i hv tried everything on chemo, nothing has worked so far.

Hi Gracelagui1

How old were you at first diagnosed?  What was your stage at first? How many years later did it come back?

My first was in 2008. My only ovary ruptured inside of my stomach. They found 13cm of GCT.  Now it is 2012, and my inhibin is climbing again.  My doctor will not do anything until my inhibin reaches 70 to 100.  I think I am headed for the debulking surgery you speak about with Lori.

Thanks

TB in GA

Hi TB,

I was diagnosed at 28, stage IC, IT came back 1 yr immediately. since then I am never in remission, i donot quite keep up with INHIBIN lever, i do CT.

Every case is individual, that is what my gyn.onco said to. u gonna to follow up closely, otherwise 2nd opnion is needed, i hv seen many doctors already.

Rgds.

Hi gracelagiu1

I appreciate you sharing your knowledge. June is a big month for me.  I go back to the doctors to see how things are looking. I also go see the breast surgeon.  I know every case is individual but at least we have each other. There maybe something each of us can help the other. I too was at 1C.   If you don't mind me asking ... what do you mean "you are never in remission".  Did you take Chemo?  I did for 3 full weeks and one day on the off weeks. My doctor gave me cisplatin and bleomycin. 

My doctor will not do CT scan until my levels of inhibin are at or between 70 to 100.

Now.. what about symptoms...  Here lately I have been so tired.  My hair is growing like crazy. When I eat, I feel bloated. Bowels changing constantly. Are there anything else that I need to pay attention to?

My tumor ruptured inside of my stomach.  Ok.. so I am falling asleep trying to type.  Talk with you all soon..

Take care..

TB in Ga

Hi TB,

I am always on chemo, BEP,DOXIL,TOXEL/CIPLASTIN,TOMAXIfin/magel, and all these clinical trial drugs i can not remember their name, sometimes AVAstin, Genzar,radiation, everything, nothing can stop this deseaze.

I am back to doxil again since too many tumors make surgery is not feasible anymore. I am ready to go, i am so tired, truly want to rest in peace.

take care.

Hi Gracelagiu1

I apologize if it is hard to talk about this. I find it better for me at times to talk with others who are experiencing the same type of disease.

Reading other postings BEP and radiation is not affective. So you are stilling taking these treatments? It sounds as though you have tried everything to see if it would work.  

I understand that you are tired and truly want to rest in peace. In my mind, I don't want to be put on all of these drugs. The side affects are more toxic and they make you feel horrible. While taking my chemo my stomach was in knots. My daughter hated seeing me in this condition.When I go back to the Dr. and they tell me surgery is not feasible that is when I am done with all drugs except pain killers if I need them ... lol

You know when people are told they have cancer, it is like the world stops turning for that person but nothing else. You know the way I feel today sometimes changes tomorrow. I go through mental challenges with this whole ordeal. Everything in life makes so upset and I feel like I am running so hard but in reality I am standing still.

I feel so sad for you, myself, and all the others who struggle with this disease. We are helpless and I do not like being without the controlling keys. LOL...

My husband wants me to fight this disease. My fighting and his means two different things.

I would like to say... you and every person who fights this way are my heros. 

Thank You!  Remember I am as well as the others are praying.

TB in GA

Hi All

I live in England and have looked up various cancer sites to get more info re; GCT'

I was diagnosed oct 2010 with what was thought to be a fibroid problem and then told it was a cyst and after surgery with my full repro organs removed was told it was a  GCT and it was UNLIKELY to return.

Under 2yrs down the road.  I  have just come out of surgery for a reccurent GCT . I am again told it may not return but , if it does , the only treatment is surgery. I have never been put on any other medication. I am 53yrs young and was advised not to take HRT.

I am being treated by the top cancer hospital in England. Royal Marsden , London. 

I found out by "accident " that the reccurent GCT had returned because I had a scan for something else that was not associated with my cancer, the scan showed fluid in my abdomen !! which was then investigated. I will continue with being monitored every   3months , scans and blood tests etc..

Josie

On Jul 29, 2012 8:33 PM bettyb59 wrote:

Hi All

I live in England and have looked up various cancer sites to get more info re; GCT'

I was diagnosed oct 2010 with what was thought to be a fibroid problem and then told it was a cyst and after surgery with my full repro organs removed was told it was a  GCT and it was UNLIKELY to return.

Under 2yrs down the road.  I  have just come out of surgery for a reccurent GCT . I am again told it may not return but , if it does , the only treatment is surgery. I have never been put on any other medication. I am 53yrs young and was advised not to take HRT.

I am being treated by the top cancer hospital in England. Royal Marsden , London. 

I found out by "accident " that the reccurent GCT had returned because I had a scan for something else that was not associated with my cancer, the scan showed fluid in my abdomen !! which was then investigated. I will continue with being monitored every   3months , scans and blood tests etc..

Josie

Hello Josie,

I'm sorry to hear of your diagnosis. 

I have been with Prof Gore's team at the Marsden for 12 years. I have a granulosa cell tumour.

I'm going through my third year of chemo. I have had five operations. It is inoperable now. The chemo did, last time, shrink the tumour by 2-3cm. It has just stablised it this time. I have my next xhemo early August.

But, I'm here to tell you that the future is bright. Research shows that this type of cancer can be cured. Follow the New Zealand medics, they are very knowledgable. 

However, because it is a rare form of cancer, little attention is given to the disease. Which means they do not test on this disease, so they know little about what treatment is best for it.

Stay strong, stay focussed. It can be an isolated place to be, just because we are few in number. Although, granulosa cell tumours affect 2% of the population. I think that is signifcant.

By sheer positivity in mind you can alter your future... :) x