Granulosa Cell Tumor

Would sure like to hear from someone who has been diagnosed with this granulosa cell tumor. who has not had a reoccurance. Is there any positive stories.I can grasp some hope from..
Does this mean 100% it will reoccur???

Hi! Would love to talk to someone going through similar problems - I have found it very challanging to get information about granulosa cell tumors. I was recently diagnosed with GCT in Jan 2005. Had a 9cm begnin mass removed along with one ovary. I was initially told everything was fine. At my follow up appointment after the surgery - I found out that the final pathology report came back with a problem. They found a 4mm stage 1 gct tumor deep within the ovary - all dr's said I should be fine and they would just watch me carefully for any changes. I know I should be happy - but there's that cloud of unknown that seems to be hanging over me. Wish there was a way to know for sure if there was anyother spots- or a way to know if the other ovary was OK. They don't seem to be in a hurry to do a total hysterectomy - at only 43 they said there is no hurry but would do it when I am ready. I am undecided if I should push to have it done. Hate to remove healthy organs and deal with a whole new set of issues with menopause- but on the other hand then I would at least know there is nothing else hanging around. Not sure I want to wait until something gets big enough for doctors to find. Would love to hear peoples opinions/experiances with GCT and what action their doctors have taken in the early stages. Everything I have read talks about the slow reoccurance rate (up to 15 - 20 years)- but it seems like so little is known or published about this type of cancer. Is that the normal rate - or just extreme cases? I would like to learn more about what to watch for and what to expect when or if it comes back. I had no problems or symptoms prior to the doctors discovering the 9cm mass last fall. Actually it was found by accident in an MRI I had done for an unrelated medical problem. I would like to know that I have a chance of finding and dealing with a reoccurance before it got to be 9cm or a big problem.

Best wishes to all and I look forward to learning and sharing information and experiences.

Hi,
I also was diagnosed with this type of tumor. I had it surgerically removed along with both ovaries and uterus. It was malignant but that is all that they are telling me. It did not rupture when it was removed so my doctor feels she got it all. I am like you and I should feel happy that it is gone. ( which I do) but I feel that it can return like my doctor told me. I will be seeing my doctor on Thursday for my 2 week post op. Hopefully she will have more info. I will post if she tells me something new. I will be praying for you.


Karen

I recently had an surgery to remove a cyst from from my ovary. Upon examination by the pathologist (did histopat), the findings was that is was a GCT and it was malignant. What is really bad is that it was raptured already when i had the surgery. Though the omentum taken during the surgery shows negative cancer cells from the rapture, still my doctor says this is really a gray area. So far, being not so good in using the internet for research, I have difficulty finding information about GCT, most especially possible treatment. Perhaps someone can share possible tips or sites with informtion on treatment like inhibin? Thanks.

Hi Jane,
I was also diagnosed with the same type of tumor. I have had the inhibin blood test and will be going for a cat scan. From what my doctor has told me this all just finishing up, after surgery to make sure it didn't reappear somewhere else. My doctor also has told me that chemo isn't used to treat this type of tumor because of the low malignacy. There is some info on the internet if you type in google or yahoo "Granulosa cell tumor." I will be praying for you ..let me know how you are doing.


Karen

Hi Karen,

Thanks!

Since the cyst removed was big (17cm) and raptured, the doctor gave us 3 choices: 1) to totally remove the uterus and right ovary (not good, I am just 25 and single, wanna have a family), 2) chemotherapy (may cause possible damage to the right ovary, and 3) wait and observe (have regular consultation with the doc and have regular checks like inhibin test, ultrasound and CT scan).

Since the histopath omentum is negative, my family has decided to take on the wait and observe path. Besides, neither of all the choice given can guarantee that no cancer cell has escaped the rapture. The doctor says inhibin is better that ultrasounds and CT scan as it will be able to detect things early. What type of inhibin test did you take? There are various type of inhibin test right?

In my case, the doctor did not exactly put in in terms of "finishing up", more like "this is the begining of a long journey", which kindda make people around me panic and treat me like i am so so sick.

When did you have your surgery? When was GCT diagnosed, before operation or after operation?

Nice to hear from someone in the same situation :-)

-jane-

Hi Jane,
I had my surgery on June 8, 2005. The mass was actually found in february but they didn't feel that it was cancerous at the time. I waited so long because I got a second opinion about surgery and also I didn't have any health insurance. I ended up having a hysterectomy ( I am 39) I have one child. I always wanted more but never got pregnant again.
She is 10 now so I figured I was done since I am going to be 40 in a month. Anyway.. mine was enclosed in the left ovary.. My doctor was going to leave my other ovary for hormones..but she said it looked suspicious to her so she took it out. I agree with your decision to try and leave everything in since you are so young. I hope you are doing well. Try not to worry.. my friends and family treated me that way for a while when they heard that it was malignant. My doctor told me in my case that these GCS can return but usually is about a 5% chance.

Let me know how you are doing,

Karen

Oh Jane I forgot to tell what inhibin test I had..It was called an inhibin B blood test. Hope this helps!


I am praying for you,
Karen

Hi Karen,

Thanks so much for the info. I'll be seeing my doctor this friday. Hopefully they will not prescribe any medications, I dislike medicine, and I kindda have this feeling that the cyst was reactive to the medicine the first doctor prescribed to try to dissolved it, so instead of dissolving, it grew bigger.

-janet-

Hi Jane,
I wish you luck on your doctor's appointment on Friday. I go on Friday for my Cat Scan. I am curious as to what kind of medication your doctor prescribed for your cyst that you felt made it bigger.

I hope you have a great day!

Karen