Granulosa Cell Tumor

Hi Karen,

My menstrual period is so irregular, happening approx 4 times a year, no specific pattern. I decided to consult with an OB gyne last year and she prescribed Provera (for mentration) and she also had me undergo ultrasound to determine if there are cyst or not. Well, there was and rather small (2x1.5cm). She prescribed me contraceptive (Dianne) for 3 months to hopefully dissolve the cyst. After taking it for 3 months, I had another ultrasound again, this time the cyst was 9x5cm already.

I am not accusing or what, it just makes me afraid to take on any medication after this incident. I know there might be other factors, but i don't know :-)

-janet-

Hi Janet,
My menstrual cycles were all out of whack too. My doctor prescribed provera too. And I also took the pill for a while. The doctor's kept telling me that it was just my hormones. Makes me wonder too. I guess like my husband says.."why do you keep talking about it when it is over" I am glad I have you to talk to :) My husband doesn't like to talk about any of this.


Have a good evening!
Karen

Hi Karen,

If in you case, your husband do not wish to talk about it, in my case, i don't want to talk about it to my family and relative, i don't like people making a big fuss and i most especially don't want my family to worry. I am also glad to have you to talk to about this.

Good luck too on your CAT scan.

-janet-

Hi Janet,
My Cat Scan went well I was kindof sick on Friday because of the stuff they make you drink before hand. And also the IV contrast they do when you are in the machine. I see my doctor this Thursday. I really hope that I am free and clear. Then I still have to see the oncologist that was in the operating room with me..He was the one that directed my doctor not to remove any lymph nodes since they did not find any cancer in any of my female organs except for my left ovary. I am hoping to put this chapter behind me so I can concentrate on my family. It has been so stressful. How are you doing?


Have a good evening!
Karen

I know you wanted to hear from someone who has not had a recurrence, but until you hear from them you might be encouraged to know that my first granulosa cell tumor was diagnosed in 1987 and I am still around. Have had 2 subsequent recurrences, chemo, lots of surgery - but living a full and fairly normal life. I'm also on the board of directors of the Ovarian Cancer National Alliance (www.ovariancancer.org). We are trying to get National Cancer Institute to focus on some rare ovarians, such as GCT, so that we can get more specialized treatments. Good luck. Annette

Hi Karen,

For my CT scan, they just had me drink lots and lots of water. I felt so bloated afterwards. When they injected the dye for the contract, it felt weird, kindda tinggling sensation.

My doctor has advice me to have the Inhibin B test. Luckily we now have it here in the country. I'll be doing it monday next week.

I do hope things will be ok already for you.

Hi Annette,

Are you a doctor?

You mentioned you had 2 recurrence, but why lots of surgery, are you saying you had more than 2 surgeries for those 2 recurrence?

I am kindda afraid to have chemo, but one of the doctor i talked to adviced me to at least have chemo. The oncologist mentioned that when one undergoes chemo, they become so thin and loss their hair :-(

Hi Annette, Karen, & Jane....my name is Lyn and I was first diagnosed with a GCT in May of 2002. The cytology was borderline, meaning it was right on the line between benign and malignant, so they told me all they thought I needed was the surgery and that the likelihood of a recurrence was very low, and that if it ever recurred, it would probably be a "late recurrence", meaning in 10-20 years. But, here I am three years later with a recurrence. They had brought me in every three months to do sonograms, blood tests, and had done 2 triple contrast CT scans since January. They said they saw one 2 cm mass and decided to surgically remove it, just to be careful. Well, I had my 2nd surgery on Sept 6th and when they opened me up, they found a far more extensive problem than they had anticipated; there were numerous masses spread around my abdomen. My doc removed as much as she could, but couldn't get it all. So, as it seems to have turned out, my tumor cells were more malignant than they had thought/reported (benign tumors don't spread) or maybe this new problem has to do with the fact they they cut the 1st tumor in half BEFORE they removed it from my body in 2002, allowing malignant cells to spill out and contaminate my healthy tissue.
My doc here in AZ said I should go see another doc in TX bec he does research on this type of CA. I am waiting to hear back from his office, but it has been over 3 weeks since my surgery and i haven't heard from them. From what I am told, if I ever hear from them, I will need to do a comination chemotherapy, though the results of my chemo panel were unusual in that my cells were non-reactive to the main chem they use for this kind of CA.
I really thought that all the tests they did would keep me safe, or at least catch "something" early, but this is not the case.
Annette - I am so glad to hear your story...I am 35 yrs old, and have a 21 month old baby girl that I need to be around for in the years to come. You mentioned lots of surgeries - they have told me that I will most likely need many other surgeries, as well, which doesn't bother me(I had my last sur on Sept 6 and competed in a triathlon on the Sept. 24th).

I noticed that there are 2 threads on this subject - This one "granulosa cell tumor" and one called "granulosa cell cancer". I put my message on both.

I was diagnosed with GCT two and a half years ago. I was stage 1a and had a TAH/BSO at the age of 50. I am involved with the Granulosa Cell Tumor Foundation (www.gctf.org), along with the New Zealand branch (www.gctf.org.nz), which are desperately trying to raise funds for research on this woefully under-researched cancer. Please go onto these websites for lots of information. This kind of ovca is so rare that the doctors don't know what to do with it and treat women with chemo that has been only tested on other, more common ovca. Also, on the (www.ovca.net) website, there is a very active thread on the message board for GCT. I have received so much info there from women who have been dealing with this frusttrating cancer. As far as ovca goes, I guess this is the kind to get because it grows so slowly (but not always!) Good luck to you all!
Also, Annette1 - are you still collecting info on GCT patients? How do I reply? Thanks,
Cindy

I had surgery six weeks ago for a tumor, did blood test before surgery said level was low, probably not cancer. Two weeks after surgery they said everything was fine, ( they sent my tumor samples to Stanford Medical Pathology University) 4 weeks later tell me I have stage 1 cancer, I am 48 years old, my mother died of ovarian cancer at age 52, I had a full hyterectomy. My gyn sent me to oncologist, he said he has only seen one case, and not sure how to treat me, so now I am being sent to UC DAVIS, Sacramento, Ca to doctor who just treats rare female tumors. I am scared because of my mother's history, and that not much is known about this. They don't whether treat me with chemo or just watch it. I don't want to end up like my mother.

I am 20 years of age, and had sugery on 12/28/05/. I had my right ovary removed to what we thought was an ovarian cyst. It turned out to be the unexpected. I was diagnosed with JGCT. I was tested two weeks prior to my sugery for ovarian cancer and everything came back normal and ok. Anyways I have had the hardest time finding information about GCT, and my doctors are failing to give me any information. From what I understand that reoccurence is at higher risk than what my oncologist originally told me. I am considering to have a complete hysterectomy, I know I am young but I feel like this is the only way to really know. If anyone would be willing to give any advice, I would greatly appreciate it!

Thanks,
Jessica