there must be new info on breast angiosarcoma

kaliki said:

My journey is just starting.
First, was I ever glad to find this sight! Like most here, have had difficulty finding information on angiosarcoma. However, unlike most of you, I haven't gotten from previous breast cancer treatment. Until now, my breast exams were fine. Actually I found the football lump myself. Hence I'm considered to have primary angiosarcoma in my left breast.

Apparently, as you'all seem to know, it's hard to diagnose. MD Anderson in Texas actually sends samples to John Hopkins Hospital for a confirmation after removing the lump. Unfortunately where I am, cancer centers aren't tops in the country.

If anyone has had treatment for this in California, I'd love to hear from you. It's a scary buggard to have and I'm trying to think as positively as I can! I have surgeon appointment in about an hour I guess to see what the next step is after the positive biopsy. I'm thinking total masectomy, but I don't have anyone to help me during the recovery. A breast cancer survivor friend who had total masectomy said it was very difficult to move and get comfortable because you couldn't really use either arm.

Anyway, if anyone can or doesn't mind sharing, I'd truly appreciate it.

Thanks so very much.
Kaliki

kaliki said:

Thank you for your reply
Survivor9yrs,
It's great news to hear you have been well for 8 months. I will keep positive thoughts for you. I had a mastectomy of one breast on Wednesday night and relieved it's out of me. Like you, I'm blessed that I have little pain. It's peculiar, but basically no pain which I'm happy about. I was going to have bilateral mastectomy but as I need to take care of my brother, felt the one would suffice for now. Besides, truth be told, if it has to spread, I'd rather it go to the other breast that other places it's known to go. I'm not sure what the 'most agressive' approach is to take. I did talk with an oncologist who wanted me to wait for surgery and take combination of Avastin and Taxol if it had spread. I told him I wanted/needed the mastectomy and then I would worry about spread and treatment afterwards. What I seem to read is that any treatment is basically still in clincial trials. I'm keeping my fingers crossed it hasn't spread. It's such a odd cancer and as you said, horrible.

Thanks again for your encouragement Survivor9yrs.

PS I'm new to this concept of posting information and message boards. Any suggestions from anyone, would be great.

kaliki said:

Surviving and Survivors
Survivor9yrs,

Thanks for the positive feedback. I'm frustrated now and trying to cope with a few issues from the surgery. My surgeon shrugged them off which kind of frustrated me. Yes, I had the numbness too. Part of that is gone now and it's a bit weird to have phantom feelings and other things. Anyway, I'm interested in hearing/knowing more about your treatment or of anyone elses. I have SO many questions about treatment etc. What I read is so negative and makes me think what's the use. The fact that you have done so well, gives me a we bit of hope. I haven't had the PET/CT scan yet. I was going to do so before mastectomy, but as I care for my brother and it's just the two of us, I had to get things prepared before I had surgery. I had done a lot of cleaning etc. and they said it was bad to do strenuous exercise before taking PET as it could give misrepresentation. I didn't want any 'misrepresentation' or guesses so opted to wait until after surgery. Now I have to wait minimum of three weeks before PET in order to let mastectomy area heal and show no 'misrepresentations'. So now I'm frustrated. One outside oncologist mentioned Avasten (sp) and tamoxcin? One apparently works on the blood and not chemo and the other is chemo. Mention of radiation treatment too. But I'm thinking is that wise, since that can cause secondary angiosarcoma.
Is there a special website where you've chatted with other survivors that I can join? I'm more than happy to give you my email address if that works and you wouldn't mind.