Angiosarcoma
I have been diagnosed with angisarcoma. Caught very early and removed from breast. Actually double mastectomy. Stage 1. Now getting second opinion on treatment.
It is very very rare. Anyone out there with it?
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I was diagnosed last week. Recommended treatment: chemo, radiation then mastectomy. Going for PET Scan this week for staging. They said it was caused by radiation I had in 2017 for breast cancer. I'm terrified. Also going to try to get into Moffitt Cancer Center in Tampa. They have Angiosarcoma group.
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I was diagnosed with angiosarcoma exactly 4 weeks ago. It all happened so quickly. My PET scans showed no signs of metastasis. My surgeon had me scheduled for a double mastectomy surgery and Sentennel lymp node removal immediately.
They believe because it was localized, they could get it all with surgery, but I wasn’t able to get reconstruction until they confirm that I wouldn’t need radiation therapy.
So Here I am, exactly one week post op and terrified to remove my bandages. I’ve covered up all my mirrors and honestly don’t want to see anything until my reconstruction surgery… it’s silly, I know, but my doctors were more concerned with saving my saving my life. For that I will forever be grateful.
I may have lost my breasts, but I get to live. I get to see my daughter grow up, go off to college, get married someday.
Of the three possible factors that caused my Cancer, the only one that makes sense is “chemical exposure”. I was unknowingly exposed to roundup weed killer for many years by the landscape company contracted by our management firm where I live. Unfortunately, it’s so rare of a cancer that no law firm is willing to take my case.
I guess there’s a grief process to this in a way… and apparently I’ve not yet reached “acceptance” yet.
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Hi @saltygirl22, and welcome to Breastcancer.org. We're so very sorry for the reasons that bring you you here, but we're really glad you've found us. You're sure to find our community a wonderful source of advice, information, encouragement, and support — we're all here for you!
We wanted also to ask if you've asked your doctor about genetic testing? According to Mayo, angiosarcoma can also be caused by having a BRCA1 or BRCA2 genetic mutation. Knowing this information may also help steer any further necessary treatment.
We hope this helps and please let us know else we can support you!
—The Mods
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I was diagnosed with angiosarcoma in November 2024, 15 years after treatment for triple negative breast cancer in 2009-2010 when I was 56. Back then I had chemotherapy, lumpectomy and radiation in that order. Was cancer free all those years. This past fall I noticed a discoloration on the skin at the lumpectomy site which led to the angiosarcoma diagnosis.
I saw specialists in Boston and the best results they have seen to treat this rare diagnosis is radical mastectomy requiring skin graft at time of surgery. Radiation is off the table since it is caused by radiation. On January 15, 2025, I had the surgery. Recovery is long and difficult because I have two wound areas, the surgical site and the donor graft site on my thigh.
The pathology report showed good margins and optimistic prognosis. However, I will require follow up with an oncologist and scans every 3 months for the foreseeable future.
Although the healing is progressing, my challenge is emotional. For the first 5 weeks post surgery I couldn’t bring myself to look at it. For the first time yesterday, I took a quick glance after a shower and was so horrified that I cried off and on for the rest of the day.
I feel very much alone and thought I would post here to see if there might be someone who has had a similar challenge.1 -
Hi @donnaleelee, it's promising that your pathology report indicates a good prognosis, although we are sorry that you've had to undergo a difficult surgery. Your mastectomy and grafting procedure was very recent, so it is normal (though understandibly disconcerting!) to see prominent scarring, skin discoloration, swelling, and other post-surgical effects at this point early on in your recovery process. Will you be considering reconstructive surgery?
We hope others can chime in on here to share their experiences with you, and we also invite you to attend our Bonded by Breast Cancer Zoom meetups where you can connect with others that are also now managing the emotional chapter of their post-treatment journey, like you. You are not alone!
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