Granulosa Cell Cancer

I just found out that my 29 year old daughter was diagnosed with stage-3 granulosa cell cancer. She will start chemo next week. I am devastated by this information. She just had her second surgery (first was an emergency procedure after a mass ruptured), to remove one tube and ovary.

Her wedding is planned for June 2005.

Can anyone help me understand what do do to support her? What will she be going through? She is 1,000 miles away from me.

Thank you.

My mother is getting ready to have surgery for granulosa cell cancer - ovarian cancer, she has already been thru 5 or 6 chemo treatments. I live 600 miles from her and it makes it very hard to be there for her like I want to, so I basically talk to her every night, that's the only way I know how to be supportive. And what makes it hard is there is not a lot of info on this type of cancer, so I feel like my questions cannot be answered, so I am very glad I found this message board, b/c so many others feel the same way!!! (I’m glad it's not just me and my mother feeling that way) it's almost like all of my questions have been answered just by reading about what other women are going thru!!!! I wish you and your daughter the very best!!!!!

Thank you for answering. My daughter will be married June 11 in Cincinnati. She has postponed her chemo until after the wedding, because she has been told she will lose her hair. I am still working full time, otherwise I would be there with her for the treatments. I WILL be traveling there for the wedding. Please stay in touch. I will do the same.

I am an 18yr survivor of granulosa cell, currently in my 3rd occurence. My first @ age 37 resulted in 3 surgeries including radical hys. Second, 12yrs later w/ tumor on the pancreas, required extensive surgeries. Last month, 5 yrs after the 2nd, 1 major tumor & 6 other cancer "spots" surrounding the bowel, resulted in bowel resection and debulking. During the 2nd occurence I also had standard ovarian cancer protocol (Bleomycin,Etopeside, Cisplatin). Now the onco team says those treatments may have killed some of the cancer but that because granulosa is a "slow growing" cell, the cancer cells are able to lie dormant and unresponsive to chemo. That's why we keep getting this disease years later (unlike most ovarians that are more aggresive). I'm also a board member of the Ovarian Cancer National Alliance and am putting out a search for granulosa survivors to try and gather info that might help us survive. The promising thing for your daughter is that it is possible to live a long time with this condition if one is diligent about monitoring it. Can you think of some way to help you or daughter? AnnetteLealM.

Annette,
I am encouraged by your email. My daughter's oncologist is reluctant to provide her with answers about what to expect. He stated that he has no statistics for someone with GC at her young age. She was advised to harvest her eggs prior to chemo for future invitro-fertilization. Initially, she was told that the fee would be $12,000. Shortly after that they settled on $4,000. I am working a second job to help pay that fee. As a parent, I am scared to death. It sounds like you have been through hell, but you are a vigilant fighter. I will do whatever I can to help her. I feel so helpless being 1000 miles from her. I am at least 3 years from retirement, and I want to be the best grandpa in the world if that day comes. Thank you for sharing your experience with me. God bless you. Please stay in touch.
Dan

Dan- Yes, some experiences with this condition are incredibly difficult, but I also have a fantastic quality of life. Inspite of all the surgeries, I have normal body functions, enjoy a rich and full married life, am active (golf, work out, grandma), eat normal foods and generally love life. There is much you should know about the chemo treatments for ovarian, particularly how to deal with side effects. They are tough but studies show that 50-60% of granulosa women respond to the chemo. As tough as it was, I wish it was available to me again. If you wish, I would love to send you my book as a wedding gift for your daughter. After the wedding, you and your daughter should check out the Ovarian Cancer National Alliance(www.ovariancancer.org).
Annette

I am sorry to hear of your daughters condition. She is so young, On the brighter side I think this cancer is slow and therefor can be removed before spreading. I wish your daughter the best of luck. I to have just been diagnosed with same.. I was horrified but i am trying to research it the best i can..hopefully they will get more info on this..

Good luck and god bless

Thank you. I just returned from my daughter's wedding in Cincinnati. The ceremony was beautiful. I kept thinking of her the night she was born. Such a tiny sweetheart, and now she's all grown up. We danced together for the first time since Father/Daughter night when she was a freshman in high school.

God bless you!

Hi Annette1,
You mentioned that as a board member of the Ovarian Cancer National Alliance you are looking to be in contact with other GCT women for their experiences. I had a radical hysterectomy last Jan 14 05. They knew before they went in that I had early cancer in the uterus, and that according to the ultrasound I had a growth on an ovary. They took everything and during the laparoscopic surgery, the affected ovary which was also stuck to the bowel, ruptured. It was found to have a GCT which they staged as 2C due to the sticking and rupturing. The abdominal washings were negative. They did not remove the omentum to my consternation. There were a lot a adhesions. CT scan 3 months later showed numerous unidentified specks and streaks. Another CT scan done a month later for comparison showed nothing of the former areas of concern. Inhibin B test was 5.5, CA125 test was 6. No chemo or any further treatment was recommended at that time since the second CT showed no concerns.
That is where I am at this point. I am due for another visit to the gyn/onc specialist next month. I too am terrified of recurrance. I keep picturing my other organs as hosts to the little cells wandering around in there from the rupture.
I have been taking a lot of antioxidant supplements, carrot juice, essiac tea and have radically changed my diet. I am eating almost no meat, soy or dairy (I was a HIGH dairy and soy eater) and am aiming toward a "high percentage" raw vegan diet. As we know, the Granulosa Cell Tumor originates in the layer of cells of the ovary that produce the hormones. That is why I had the occurance in the uterus, with all the hormones being produced in floods by the tumor-it caused the beginning of what happened in the uterus. That is why I am so worried about the hormones in animal foods and the hormone effect of soy. I want to get full benefit from not only the antioxidant properties of the fruits and vegetables I eat and if they are largely raw, I hope to benefit from the live enzymes. I don't know if all this is quackery or not, but it sure isn't hurting me since I feel much much better than when eating dairy, meat and mostly cooked foods. I enjoy the fresh flavors of the foods and the light, non-sluggish feeling after a meal. I was previously a VERY heavy coffee drinker, but since I have been concentrating so much on antioxidant teas etc, I don't have any craving for coffee whatsoever. I make a smoothie every morning consisting of lots and lots of mixed greens (usually a lot of spinach) with a pineapple juice base, brocolli tops, some kelp granules, usually two kinds of sprouts, a half an avacado, a banana, an apple, and some bee pollen with sometimes some aloe vera juice. It tastes very refreshing and very satisfying. I could never get enough greens just by adding more salad and carrot sticks to my meals.
That is pretty much what I am doing. Hoping to stay healthy. Suggestions welcome.
Tirza

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! Cindy