there must be new info on breast angiosarcoma

survivor9yrs

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

your journey with AS
kaliki,
so sorry to hear you are having to go through this horrible cancer. i had secondary AS. diag. in oct. it has now been 8 mos. and all is well, so far. i had a simple mastectomy of one breast. thinking back, i did not have any trouble with it. no pain. i was able to do all i needed to. take the most agressive approch to rid yourself of this cancer. there are alot of survivors of this. good luck.
survivor9yrs.

kaliki

survivor9yrs said:

your journey with AS
kaliki,
so sorry to hear you are having to go through this horrible cancer. i had secondary AS. diag. in oct. it has now been 8 mos. and all is well, so far. i had a simple mastectomy of one breast. thinking back, i did not have any trouble with it. no pain. i was able to do all i needed to. take the most agressive approch to rid yourself of this cancer. there are alot of survivors of this. good luck.
survivor9yrs.

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.

survivor9yrs

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.

thinking of you
kaliki,
glad to hear you are doing good. from everything i have read, it is much better to have it removed and then chemo. the chemo. can than work solely on any mets or just safeguarding your body, instead of having to use it all to kill a tumor. my nurses couldn't believe i had no pain from my mastectomy. i'm numb. i had taxotere and gemcitabine. so far so good. have you had a ct or pet scan. mine had not spread. had a pet and ct before surgery. i do know a person who is a 4 yrs survivor of this and have chatted with others who have survived from 1-7 yrs. so maybe it can be beat. i sure am going to try.. so good luck.
survivor 9yrs

kaliki

survivor9yrs said:

thinking of you
kaliki,
glad to hear you are doing good. from everything i have read, it is much better to have it removed and then chemo. the chemo. can than work solely on any mets or just safeguarding your body, instead of having to use it all to kill a tumor. my nurses couldn't believe i had no pain from my mastectomy. i'm numb. i had taxotere and gemcitabine. so far so good. have you had a ct or pet scan. mine had not spread. had a pet and ct before surgery. i do know a person who is a 4 yrs survivor of this and have chatted with others who have survived from 1-7 yrs. so maybe it can be beat. i sure am going to try.. so good luck.
survivor 9yrs

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.

survivor9yrs

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.

hang in there
kaliki
i know all to weell how frustrating this all is. when i was first diag. they were going to do the chemo first. then since my scans were clear, they decided to do the surgery first. i'm so glad they did it that way. 2 wks after surgery i started chemo. one wk. i had gemcitabine, the next wk i had gemcitabine and taxotere. then a wk off. i had 12 gemcitabines and 6 taxoteres. i had alot of side effects. especially fluid retention and shortness of breath. it was a long winter. my incision is all numb and i too have some phamtom feelings. i guess that is normal. no matter what you read, it is all worth the treatment and anything else they throw at you. it's your life, grasp it and hold on. i wonder most every day, will it come back. will today be that day. but at the same time, i'm enjoying my life and look forward to each day. all normal.. it is a nasty cancer, but there are people who have made it. most of those i have chated with are on this site. there is a facebook page for angiosarcoma, i have not been on it. cancercompass, and many more. please feel free to give me your email. it is much easier to chat through that and more private. keep on fighting and have the scans as soon as possible. chemo can also effect the scans. it did mine. as for radiation.. that's your choice. i wouldn't be in this mess if i hadn't had it. but it may be your best choice. talk with your onc. and make that decision together. it's your body..so send me your email and we will get through this. take care
survivor9yrs.

kaliki

survivor9yrs said:

hang in there
kaliki
i know all to weell how frustrating this all is. when i was first diag. they were going to do the chemo first. then since my scans were clear, they decided to do the surgery first. i'm so glad they did it that way. 2 wks after surgery i started chemo. one wk. i had gemcitabine, the next wk i had gemcitabine and taxotere. then a wk off. i had 12 gemcitabines and 6 taxoteres. i had alot of side effects. especially fluid retention and shortness of breath. it was a long winter. my incision is all numb and i too have some phamtom feelings. i guess that is normal. no matter what you read, it is all worth the treatment and anything else they throw at you. it's your life, grasp it and hold on. i wonder most every day, will it come back. will today be that day. but at the same time, i'm enjoying my life and look forward to each day. all normal.. it is a nasty cancer, but there are people who have made it. most of those i have chated with are on this site. there is a facebook page for angiosarcoma, i have not been on it. cancercompass, and many more. please feel free to give me your email. it is much easier to chat through that and more private. keep on fighting and have the scans as soon as possible. chemo can also effect the scans. it did mine. as for radiation.. that's your choice. i wouldn't be in this mess if i hadn't had it. but it may be your best choice. talk with your onc. and make that decision together. it's your body..so send me your email and we will get through this. take care
survivor9yrs.

Email address
Survivor9yrs, I sent you mail through this website with my email address. If you don't/didn't get it, let me know and I'll just post it here.
Thanks.