Granulosa Cell Tumor

I am 21-years-old and have just recently been diagnosed with Adult Type GCT. I went to the doctor because I had been having my period for over two weeks and after an ultrasound I was told there was about an 8 cm mass in my left ovary. At first my gynecologist thought it might be a dermoid cyst and said I would need to have surgery to remove it. It was very scary to find all this out, especially since I had never had to have any type of surgery before. I was supposed to have a laparoscopy and go home the same day. I had surgery June 8 and things didn’t go as planned. As soon as my gynecologist cut into my left ovary I started bleeding a lot so he had to make a full incision. He also ended up taking out my whole left ovary and tube (which ended up being a really good thing). I stayed in the hospital for three nights and had to have a blood transfusion because my hemoglobin got down to 5 (I got 2 units of blood). I had an appointment with my gynecologist a week after I got out of the hospital, and that is when I found out that it was more than a dermoid cyst. The mass ended up being bigger than he thought and the pathology report came back saying it was cancerous. I just recently saw an oncologist/gynecologist and he told me it was Adult Type GCT. It looks like it was confined to just my left ovary and that it was stage 1.The only follow-up he recommended was taking Provera and going in every 3 months for about a year for an exam and blood work. He said I will need to have continuous follow-up to make sure my levels are good and it doesn’t come back. His biggest concern was me developing Uterine Cancer but he said the follow-up and taking Provera should help that. I would really love to hear from others who have or are currently going through a similar experience. There really isn’t a lot of information out about this and it is pretty scary not knowing and dealing with this at such a young age. Does anyone know how common it is for it to recur or to develop Uterine Cancer?Is the survival rate good if caught early? Thanks.

Hi, I just turned 40, but I dont look or feel like your normal 40yr old woman. The same thing happened to me just last week with the exception of the blood transfusion. Your not alone & I'm a little scared too. I hv an appt with an oncologist as well next week. My cyst with the granulosa cell tumor was 14cm large & they also removed my left ovary. They said that the tumor was contained in its capsule which was very relieving for me to here. I don't know what my treatment will be, but I'm hoping & assuming that it will be the same as what you had stated. Please email me at let me know how you are doing & coping so far. My incision really bothers me still , but thank god no pain. Hope all is well with you & hope you are up & running again.

Hi! I have GCT also. You need to go to an oncologist because being on any kind of hormone is considered to be a bad thing. It is good he told you to get regular check ups though. Are the blood tests Inhibin A and B? That is the usual blood test. Most important thing is to get an oncologist who hopefully knows something about GCT. Good Luck.

hey there, i am 22 years old and  7 weeks postop with a gct. it was a pretty large one and my left ovary and tube were taken out. i saved the other ovary and uterus for future children and will have the rest removed when that is finished. it is stage 1a gct which is good and all i have is followups and blood tests forever hopefully. i too am worried about reccurances. there is so much out that to read and i guess no one knows for sure. glad to know there are more people with this rare cancer.  

Hi My daughter aged 14 was diagnosed with juvenile granulosa cell tumour She had surgery in August 2012 where they removed her right fallopian tube and ovary What they removed weighed a whoppping 8kg We found out in September it was this type of tumour At the moment they have advised regular screening monthly blood tests and regular scans every 2-3 months Not sure what stage its at Not alot of information as no one really knows much about it So keeping fingers crossed it doesnt reaccur

Hello,

I am new to this site. I was diagnosed with GCT last year, completed chemo and am very down about the prognosis for GCT. I just wondered if any of you live down South? I live in South Carolina and would love to know if there is anyone near my part of the world who is dealing with this. Somehow, I would feel better if I knew someone else with this who isn't worlds away... I don't know anyone and have never met anyone going through this. I just feel very displaced and alone right now. Thanks for any feedback..

Kay

 

 

 

Hello Kay and everyone I am from the UK My daughter and i have never heard of this before  Have just read peoples messages on here I cant help much Kay as we do not know enough about this ourselves The UK has been in touch with Germany as they are the only specialists can help us We are much in the dark as everyone else Just praying everyone has a safe and healthy journey x

Kay,

I live in Detroit, MI, and actually today is the 4year anniversary of my surgery.  I was diagnois with GCT in December 2008, I had never heard of it before. Started to do a lot of research on the topic.  I am blessed to have an oncologist that is familiar with GCT.  It was not recommended for me to have chemo.  I have had Inhibin A &B blood testing every 3 months, and a CAT scan or PET every 6 months. 

Hi,

Do you know what stage you are? Have you ever had the cancer enter your lymph nodes? Thanks,

Kay

Kay,

Just reread my respond, and I need to correct something. I did not have chemo.  I was diagnoised at a stage 1b, and no it has not enter my lymph nodes.  I have had my inhiblin to go up for a few months, however it went back down on its own.  Now I have the blood test, and if no change no test.  I was told by on Oncologist if the count rises, then we have to go back to having the Cat Scans or PET.