Hormone Therapy For Desmoid Tumor

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My child has a desmoid tumor and has had two surgeries that resulted it in growing back each time within two years. We are now considering radiation or homone therapy to shrink the tumor and are interested in anyone who has had success with using hormone therapy to shrink their tumor and how long has it stayed shrunk.

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Foodmaven

What kind of hormone treatment are we talking about giving your child? I have a positive progesterone receptor type of sarcoma, I think desmoid is similiar? I took an aromatase inhibitor for uterine sarcoma and am stable for 3 1/2 years. I am off it a year to rest my body. All of the women on our list who take what we call anti-estrogen hormones are either getting shrinkage of staying stable or taking it to prevent recurrence. So far, it is working. Doctors only started giving this to uterine sarcoma patients about 4 years ago.

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Monetmom

Thank you for your quick reply. I've been working 12 hours a day at my job trying to wrap up things before I take time off to be with my daughter and haven't been able to check my personal e-mail in a month. I'm not sure what hormone therapy yet. Right now, my daughter is scheduled for surgery at the end of the month and the most common follow-up protocol for desmoids is radiation. However, radiation concerns me because the growth is close to her spine. I've been trying to explore alternate treatments on the web. She is only 27 and I'm not sure how many years she'd have to be on hormone therapy if we were to pursue it, but this is her third surgery and the tumor keeps growing back.

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Foodmaven

Whatever hormone treatment they suggest will be for about 5 years if she can tolerate the side effects. It is not like HRT. It is an anti estrogen treatment. You did not say where her primary was. Mine was in the uterus in a fibroid. I have had 4 recurrences and I am a 24 year survivor, so tell your daughter to have hope, there are people out here who have gone through a lot and are still surviving. Best wishes to your daughter, Never give up hope! Miracles do happen.

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Monetmom

Desmoids are classified as aggressive fibroidmatosis, which is what started me investigating anti-estrogen therapies. Her tumor is on her back above her waist. She had a serious fall several years ago which they say my have triggered its growth. I'll pass on your good wishes and the fact that you're still going strong after 24 years. Thanks for your support and my best wishes for your continued good health. Linda

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Tammy_r

I just wanted to write to you and see how your daughter is doing. I was diagnosed in 1982 when I was twelve years old. I am 36 now with three daughters of my own. I have had 14 surgeries, the max of radiation, and one full year of chemotherapy,also hormonal drugs and inhibitors. Gleevec seemed to work for awhile. Now the tumor is growing again. Despite all this and as hard as it is to live with. Try to remember this disease is an inconvenience, but you can have a full life.

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Annnnnne

I was diagnosed with a desmoid tumor on Dec.24/05 and had it removed on Jan.21/06. I have decided not to follow up with the radiation treatments because it is so close to my ovary that I may not be able to have anymore children in the future. It has only been 6 months since the surgery, but I was wondering IF all the people who have had surgery had it done by an oncological surgeon? And has anyone had it come back after radiation?

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Marissa2008

I am 15 and have a reoccuring desmoid tumor in my thigh. I have had four surgeries since I was first diagnosed when I was 12. My last sugery was a little over a month ago and I started radiation therapy this week. Because I have had reoccurences in the past, the doctors aren't giving me much hope that radiation will work. I was wondering what other treatments people have had that had worked. My doctors have talked about the Gleevec and chemotherapy, but they have told me that it doesn't work for everyone. Have these treatments worked for anyone?

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Jessicafromnj

On 1/25/2006 Tammy r wrote:

I just wanted to write to you and see how your daughter is doing. I was diagnosed in 1982 when I was twelve years old. I am 36 now with three daughters of my own. I have had 14 surgeries, the max of radiation, and one full year of chemotherapy,also hormonal drugs and inhibitors. Gleevec seemed to work for awhile. Now the tumor is growing again. Despite all this and as hard as it is to live with. Try to remember this disease is an inconvenience, but you can have a full life.

I am also 36 years old and have survived Desmoid Fibromatosis for 24 years. I was on Tamoxofin for a little over a year at age 12 and then I was given radiation of the pelvic region and lower back area. My tumor is changing suddenly after three missed pregnancies. We are now at NYU clinical cancer center getting tested for new growth or possibly radiation induced cancer from 23 years ago! I am freking out to say the least. I am also dealing with the possibilty of never having children of my own. I've been very healthy the past 23 years and now this. Anyone want to share? I'm scared out of my mind.

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Jessicafromnj

On 7/23/2006 Marissa2008 wrote:

I am 15 and have a reoccuring desmoid tumor in my thigh. I have had four surgeries since I was first diagnosed when I was 12. My last sugery was a little over a month ago and I started radiation therapy this week. Because I have had reoccurences in the past, the doctors aren't giving me much hope that radiation will work. I was wondering what other treatments people have had that had worked. My doctors have talked about the Gleevec and chemotherapy, but they have told me that it doesn't work for everyone. Have these treatments worked for anyone?

Radiation did help stop my desmoid tumor. It just stopped and never grew again for 23 years. Now I am dealing with it again. It's like it woke up all of a sudden. I know that the doctors will find a way to control your tumor. Keep a positive spirit. Please let me know how things go.

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