Angiosarcoma diagnosis
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. Thankfully, no chemotherapy unless scans detect cancer again.
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.
Comments
-
@donnaleelee I'm so sorry to hear all you have been dealing with lately. Glad to hear the prognosis was good and you will be watched closely. I can't say that I've had your exact emotional challenge but have had many physical changes to deal with over the years with this disease. I'm here to say it's okay to grieve the loss of your breast and it's normal. I remember looking at myself in the mirror my first time around and thinking who the hell are you? How did you get here? Between being bald and my bilat mastectomies, port etc. waiting for implants I felt like Frankenstein. Even now I tell my husband I am pieced together like a quilt. Give yourself time to adjust to this radical physical change, it's a lot to deal with. One step, one day at a time. sending big hugs and strength your way,
0 -
Hi @donnaleelee, I'm so sorry that you ended up with angiosarcoma. Radiation can have some devastating side effects. I ended up with several, radiation induced pulmonary fibrosis which destroyed much of my right lung being the worst. My pulmonologist told me that some people are genetically predisposed to have bad reactions to radiation at the cellular level. It's a very small percentage but that is no comfort when you are one of them.
The surgery is disfiguring. I don't know where in Boston you were treated but MGH has a burn unit which also does wound care for patients with other injuries including those with skin grafts. They use special film bandages that help reduce scarring. They can also do laser surgery to relieve pain and itching if that persists. There are counselors who deal with people whose injuries have left them disfigured, support groups, makeup artists and plastic surgeons if that is a possibility.
While I was cooking my arithritic knee buckled causing me to fall onto the stove and catch fire. I ended up in the burn unit with my face, arms and front torso covered in deep partial thickness (2nd degree) burns. I had just finished whole breast and axillary radiation six weeks prior. This was during covid so I could hide some of my face with a mask but it was hard to accept what I looked like. It took about a year but I healed up way better than I thought was possible. With makeup on I look normal now; nobody would ever guess how horrible I looked.
There are wound surgeons who work at other hospitals dealing primarily with diabetic wounds but they have training to improve the healing of other types. There would probably need to be coordination with your oncologist because of the cancer (I couldn't have laser surgery for the nerve pain in my right breast where my tumor was) but it's worth making inquiries about what can be done. At the very least specially trained counselors can help. It might never get perfect but it will get better. All the best.
1 -
Thank you @cookie54 for you encouraging words. It sounds like you have a wonderful, positive attitude and a supportive husband. I lost my husband almost five years ago to leukemia (AML) and he would have been my biggest cheerleader. We were high school sweethearts married for 49 years. I live in a multigenerational home with my daughter, son-in-law and 3 children, so I still have a lot of support. My daughter has had to change the surgical site dressing every day since I got home from the hospital. She is amazing. I am so blessed to have her. I will not be a candidate for reconstruction due to the skin graft and I will have to wait until around June to be fitted for a prosthetic. I feel a little lopsided!!
@maggie15, oh my goodness! I can’t believe what you’ve been through! My prayers are with you as you continue to heal. Thank you for your encouragement and suggestions for care. My plastic surgeon is MGH/Brigham and has been taking good care of me.
All the best to both of you.
0
