Anyone Out There have Angiosarcoma from Radiation?

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Maureen3
Maureen3 Member Posts: 11
edited March 2014 in Breast Cancer #1
I was diagnosed with Stage III breast cancer five years ago next month. I had a mastectomy, chemo and radiation. Earlier this year, during my six month check up, my Oncologist found 12-15 tiny tumors in the radiated tissue. A biopsy of two of them revealed they were benign angiosarcomas. This is apparently an uncommon manifestation of radiation therapy. The only documented treatment is to remove them as there's evidence that they may morf into angiocarcinoma(s) without warning. Because I have so many, it would require the removal of most of my chest wall plus, plus, plus to capture all the radiated tissue. In consultation with my oncologist (an awesome woman) we opted to try Avastin first to see if they could be reduced or eliminated through drug therapy. Didn't work. Last week a burst of 8-10 more tumors appeared. She's recommending I try Rapamycin. I'm reluctant, as the side effects include potential relapse of breast cancer among other not fun things. Anyone out there experience this radiation-related problem? I would so appreciate any words of wisdom about how to make this difficult decision. Thanks!

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  • Cindy54
    Cindy54 Member Posts: 452
    #2
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    Maureen, I don't have any experience with your type of cancer. I have never heard of this horrible beast that you have. I was hoping some of the others would chime in and post, but I see you have no replies yet. I guess you are just a rare gem here. I read your post again and it sounds like you are thouroughly looking at your options and doing as much research as you can. Can you call the cancer society and ask if they could refer you to someone in a similiar situation? I think if you could talk to some of the others with your type of cancer that would help with any decisions you need to make. I wish you well and send a hug and a prayer, Cindy
  • Unknown
    Unknown
    #3
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    Maureen, I am sorry that you have to go through this. It is very upsetting I'm sure. I have never heard of this particular side effect of radiation. I gather it is very uncommon. Does your oncologist have any statistics at all on the effectiveness of the drugs that she is suggesting? Removing them surgically does sound quite extreme. There must be a drug that can help with this. Wish I coould be more helpful. Please keep us posted. God bless, Eileen
  • Maureen3
    Maureen3 Member Posts: 11
    #4
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    unknown said:

    Maureen, I am sorry that you have to go through this. It is very upsetting I'm sure. I have never heard of this particular side effect of radiation. I gather it is very uncommon. Does your oncologist have any statistics at all on the effectiveness of the drugs that she is suggesting? Removing them surgically does sound quite extreme. There must be a drug that can help with this. Wish I coould be more helpful. Please keep us posted. God bless, Eileen

    Cindy and Eileen, thanks so much for your replies. From all I've learned from my oncologist and the research I've done on my own, this is not common. The most comprehensive research we've found was a study of a small group of women in the UK (about 30) who had these kinds of radiation induced tumors. Sadly for me, the women tracked had maybe one to three tumors- not the dozens I have- and all of them had them surgically removed to preclude the potential evolution into angiocarcinoma. My oncologist has indicated that we are 'learning about this together' as there simply isn't any data out there to help us determine what, if any drugs might reduce or eliminate these tumors, or better yet, if there is any research or drugs which have merit in keeping these benign tumors from becoming cancerous. Thanks for your comments however- it is so helpful to know that someone else is listening and has an understanding of how hard this is.

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