Granulosa Cell Tumor

Hi Lyn,
I was just wonder if your docotor ever gave you the name of the doctor in Texas doing research. My tumor was thought to not be cancerous and they sawed it in half to remove it from my ovary. Unfortunately for me it was and it has now spread over my entire body. I have had 4 major surgeries with mulitple reoccurances. I was diagnosed in 1998 and am now 39 yrs old. Its been a year since you posted this e-mail and I hope that all is going well for you. Oh, if there is a specific protein marker in your tumor Gleevec has been noted to disolve the tumors. Unfortunately I do not have that marker. You can google it, as I do not remember the marker number.
I had Taxol chemo and all it did was make my hair fall out. Lupron injections kept the tumors from advancing for about a year and a 1/2 before the cancer broke through the meds. I kept my left ovary and uterus up until this last bout when the cancer invaded them both. Unfortunately, I have not been able to have children due to the GCT. Again, if you were given the docs name in TX doing the studies I would appreciate the info.

Thanks
Rebecca

My daughter Ali was diagnosed at age 11 with Granulosa Cellular Cancer. She is now 16 years old. I have been told by her team of Doctors that she is the youngest recorded case of this type of cancer. Her tumor(12lbs)was removed 5 years ago this month. Since the removal of her tumor she has been healthier than she has ever been. However, I was told that her cancer would without question return. I'm afraid there is no cure, she cannot receive chemo or radiation therapy. The only recourse in the case of a reoccurance is surgical removal. Ali has had her left ovary and fallopian tube removed. I am told that the areas that they are watching are reproductive, stomach, Liver, Lungs and lymphatic system. Her inhiben-B level is monitored monthly via blood tests and will be for the remainder of her life.

I know that this all sounds very negative in the small spectim but in looking at the big picture Ali's illness has taught myself and my family so many valuable lessons. While I keep a watchful eye on her health, I thank god for every single second she is still here with us and the health that she has today. Ali has an incredably healthy outlook and a much different outlook on life that I don't see in most adults today let alone a young lady her age. She has rubbed off on us all and we tend to not take the minor day to day pitfalls as hard as we used to. Life is way too short terminal illness or no. The power in positive thinking is incredible.

Annette,

Thanks for your encouraging post. I had a hysterectomy for a recurrance of GCT two Fridays ago. My first diagnosis and subsequent oopherectomy was in 2001 (Stage One). I am 49 years old.

My case goes before a panel of doctors at Beth Israel as to next treatment. After reading other posts, I'm sure that they'll be suggesting chemo. After reading articles in emedicine.com, I realize there may be some choices as to which drugs. Can you tell me the drugs used in your chemo?

Many thanks,

Barbara 

 

 

On 5/21/2007 Bee2007 wrote:

Annette,

Thanks for your encouraging post. I had a hysterectomy for a recurrance of GCT two Fridays ago. My first diagnosis and subsequent oopherectomy was in 2001 (Stage One). I am 49 years old.

My case goes before a panel of doctors at Beth Israel as to next treatment. After reading other posts, I'm sure that they'll be suggesting chemo. After reading articles in emedicine.com, I realize there may be some choices as to which drugs. Can you tell me the drugs used in your chemo?

Many thanks,

Barbara 

 

 

Hello, Barbara. First, congratulations on discovering your condition at Stage 1. That is very good news and will be instrumental in deciding the best course of treatment. My cancer was staged at 2C because the cancer had moved from one ovary to the other and the tumor had ruptured.

Treatments have changed a lot in the last few years, lessening the toxic effects while maintaining the benefit of the drugs. Also, there are new drug therapies that are very promising.

My chemo treatment in 2000 was Cisplatin, Etopeside, Bleomycin. Since my cancer recurred after that, that chemo familiy is now considered ineffective for me. A later recurrence was treated with Tamoxifin/Progestrone, but it recurred again. Last year I entered a clinical trial of a monoclonal antibody, APOMAB, being tested by Genentech at Premiere Oncology of AZ in Scottsdale. It was very effective in knocking down 4 of 7 tumors and the remaining 3 appear necrotic. You can get more info on my trial at this website: ovariancancer.org (click on Survivor Stories - Annette Leal Mattern).

Also, if your doctors want to talk to my oncologist, he is Mike Janicek, Scottsdale AZ and he has several granulosa patients. He has truly been a partner in sustaining a good quality of life while dealing with this stubborn disease.

FYI, women whose disease is discovered in Stage 1 have an excellent prognosis. And, granulosa cell is a slow grower, so if you are consciencious about it, you can have a full, happy, healthy life.

Please let me know if I can help in any way.

Annette

 

On 11/6/2006 Heather Deanne wrote:

My daughter Ali was diagnosed at age 11 with Granulosa Cellular Cancer. She is now 16 years old. I have been told by her team of Doctors that she is the youngest recorded case of this type of cancer. Her tumor(12lbs)was removed 5 years ago this month. Since the removal of her tumor she has been healthier than she has ever been. However, I was told that her cancer would without question return. I'm afraid there is no cure, she cannot receive chemo or radiation therapy. The only recourse in the case of a reoccurance is surgical removal. Ali has had her left ovary and fallopian tube removed. I am told that the areas that they are watching are reproductive, stomach, Liver, Lungs and lymphatic system. Her inhiben-B level is monitored monthly via blood tests and will be for the remainder of her life. I know that this all sounds very negative in the small spectim but in looking at the big picture Ali's illness has taught myself and my family so many valuable lessons. While I keep a watchful eye on her health, I thank god for every single second she is still here with us and the health that she has today. Ali has an incredably healthy outlook and a much different outlook on life that I don't see in most adults today let alone a young lady her age. She has rubbed off on us all and we tend to not take the minor day to day pitfalls as hard as we used to. Life is way too short terminal illness or no. The power in positive thinking is incredible.

Hello. I just read your message about your daughter. I want to reassure you that she can live  along life! I'm a 20-yr survivor of GCT. First diagnosed in my 30s when a large tumor ruptured. I was stage 2C. I've had several recurrences, some resolved with surgery BUT last year, when 7 new tumors presented (3 on the liver), I entered a clinical trial for a monoclonal antibody drug that causes "cell suicide" and only is attracted to cancer cells.

These new treatments will change our approach to treatment in the future. It is certainly promising for your daughter because GCT can be dormant for many years, then reappear. It was 12 yrs between the 1st and 2nd occurences in my case.

I believe there are 3 important things for you and your daughter to keep in mind:

1. Technology is improving our ability to discover the recurrence earlier and earlier. This will give her more treatment options and will likely be less traumatic.

2. Research and new drug development is very promising. There are literally hundreds of clinical trials going on in the US and around the world. For more info on this, go to ovariancancer.org. This advocacy group, which I happen to serve as a board member, keeps ovarian cancer on the radar screen of biotech / R&D / trials and legislative initiatives.

3. Granulosa Cell is a slow growing cancer.

Finally, I'm so happy to hear that you and she have such a great attitude about life. It is what has kept me alive and loving life all these years.

Please let me know if I can help in any way.

Annette Leal Mattern

Dear Annette1,

 Can u tell u how many surgeries and chemos u had before ur sucessful trials pls.? i hv gone through a lot,4 surgeries, 8 chemos, ur drugs is the last hope of my life.

 Can u tell me who was ur oncologist pls. too?

 tks very much.