Angiosarcoma of the breast

Hi Hope you are doing well

I was diagnosed with angiosarcoma of the breast in august 2007, coursed by radiation recieved in 1997 when i was 35.

I had a mastectomy and then three munths later, more skin had to be taken from the chest wall, now i am on chemo therapy/ taxol.

CAn anyone tell me what they are on, i live in england and feel my be the oncologists in the states may see more people with this disease,

any feed back would tell me more as the doctors don't seem to say to much.

Ashlea,

Iam 32 years old and was diagnosed with breast cancer in Oct. 2007.  After 6 months of treatment and a double mastectomy they said it was angiosarcoma.  That was in March 2008.  After 8 weeks of radiation, I have just been told (July 2008) that it has metastesized to my lungs and liver.  I am curious how you are handling the taxol because I am supposed to start it next week.  Have you had any evidence that Taxol is working on your tumors or did they get all your tumors out and there's nothing to watch? 

About doctors...there aren't many anywhere who've seen many of these cases.  It is too rare.  I have been seen in Los Angeles, at Cedar's Sinai.  They have a sarcoma center - Dr. Forscher.  I have heard great things about MD Anderson Cancer Center in Texas and Dana Farber on the East Coast somewhere as well.    

Best of Luck and Praying that your body is healed!

God Bless,

Monica

Do you know exactly which chemo drugs your sister received for her angiosarcoma?  I was misdiagnosed in October with a breast cancer, , but found out in March after chemo and double mastectomy that it was angiosarcoma.  I didn't receive the right "cocktail" of chemo drugs for angiosarcoma the first time around, and I have just been told that it has spread to my lungs and liver.  They are starting me on Taxol next week and possibly Avastin as well. 

Please let me know what drugs she received as I want the same outcome as she has experienced!  I hope she is still doing well!

God Bless,

Monica

Hi Ashlea, hope you are feeling OK and handling chemo, hard to do, I'm sure.

My experience, as I said earlier, was breast angiosarcoma caused by radiation I received in 1994 for a different breast cancer.

My oncologist at Nevada Cancer Institute did not feel chemo was appropriate for me at this time.  I had a mastectomy on 5/1/2008 and a subsequent CT/PET fusion scan did not indicate any gross metasteses.  Therefore, my surgeon and oncologist feel that AT THIS TIME, careful monitoring is indicated but they found no basis for chemo now.  I would add that this was the second oncology opinion I received.  The first opinion was that I should start doxorurubicin at once but my surgeon strongly disagreed with that recommendation.  I may have chemo in the event I have a recurrence of this beast but at the moment, no chemo.  I will be having regular CT/PET scans and whatever other monitoring tests they feel are necessary. 

I'm sorry but I'm not sure what taxol is.  If it's similar to or related to tamoxifen, I had a course of that following my 1994 cancer. 

It's true that the doctors don't see many cases of this, that is also the case in the states.  My own primary care physician admitted that he'd never heard of such a thing which is why he referred me to the leading-edge breast care specialist in nearby Las Vegas.  It is very difficult (from my standpoint) to obtain information on this monster but it is because there are so few of us, I guess not enough to provide a good statistical base.  I fear that this could become a pandemic, given how many women were treated with lumpectomy/radiation for breast cancer during the past .

I wish you the very best outcome, please post and keep us informed of your progress.  I am curious as to why it was necessary to do follow-up surgery after your mastectomy.  Was this a recurrence or?

Hang in there!

Dianne

HI diane

Well in march 2007, went to my surgoen and said there was a bruise on my breast they took biopsies and said that i hd changes of the skin, not to worry, but he didn't know how long it would take to calm down.

july went back and they still said changes but they were showing signs of change so the best thing to do was to have a mastectomy, i waited 6 weeks on his advice went on holiday, lots of changes happened, so i told them  not to tell me skin changes again it was cancer, did op and than they told me that it was angiosarcoma but they thought they had got very good margins, two weeks latter i woke at 4 in the morning and the scar had burst thay said it was infection but it didnt really clear alto gether.three months later had to have chest wall wide excersion as it was still there, so then had skin graft, i had fluid build up from the beginning although they didn't admit to that until the practise nurse rang and said something had to be done, that was when they took more biopsies and got me in touch with Professor Hassan at oxford cancer research, england, he was the person that said the taxol chemo would be the best i have it once a week for three weeks and then a week off will take that for about six months.

The chemo has helped as before i was having to pop fluid from my chest about four times a day, i would get  about a pint of fluid a time, not wery nice and very difficult to go out, since chemo started three months ago it no longer needs popping, and the pain is so much better only have pain when i stretch.

let me know how things go with you and what treatment you have had.

Many thatnks for replying hope all goes well

Ashlea 

hi hope you sae doing well i hope wht treatment did they give you how is it going, hpe you are managing to cope well

all the very best

ashlea