Angiosarcoma of the breast

Carolynlg

Hello Everyone,

I had bilateral BC 8 years ago. I had Surgery, Chemo and Radiation then. I had a few complications, infections, and other stuff that wasn't too much fun but mostly everything went well. I've had a great 8 years since then. Wonderful life and sure can't complain. This year I went in for my routine mammogram and suddenly I was right back on the merry-go-round.

It seems they have found an Angiosarcoma in my right breast. From what the DR's. have told me combined with the research I have done this is a rare and aggressive cancer of the breast with a strong tendency to recurr locally and metasize to the lymphatic system. Whoo! that is a mouthful. I've found other info as well that is even more of a downer but I'm trying to keep a positve attitude here and concentrate on the postive. I have a great SO. I have total confidence in her. I'm not sure yet what further treatment will follow surgery. That is set for Nov 24. I will have a bilateral mastectomy then.

 I guess I'm supposed to post a question here not just dialog all day. I'm looking for someone else who has gone through this and can tell me what their experience was/is. What treatment did you have and what successes or problems did you face? Also did you have reconnstruction right away or not at all, or maybe at some later time. I''m very confused now and not sure of what path I should be taking.

8 years ago I was on another BC Forum (I can't find it now) and the gals there were a terrific support team. So I'm hoping that you all will be too and that I can likewise support someone else in their need.

God Bless you All

Carolyn

Ozzi

I did not have an angiosarcoma but I did have a double mastectomy 9 years ago.  I had immediate reconstruction begun (skin sparing, tissue expanders, saline implants) and have never regretted it for a day.  Of course the surgery is rough at the beginning, but do your excercises and make sure to treat yourself well.  From surgery to the end of the reconstruction was about 9 months - depending on the course of chemo that my be recommended.  I have already said a prayer for you and will keep you in my thoughts.  One day at a time Carolyn,  You are already a warrior - you will continue to be well. 

Carolynlg

Ozzi, Thanks for the encouragement. And thanks for your prayers. I do believe that I will be well. But it is nice to hear someone else say so too.   God Bless You. Carolyn

MsBliss

Dear Carol,

I am sorry that after 8 years of success this pops up.  I hope that you take control of your care and educate yourself as much as possible and that includes some nutritional choices that will favor a good recovery.  My rad onc told me that the risk of angiosarcoma is elevated after radiation therapy for bc.  You mentioned that you had rads, did you do the standard therapy after lumpectomy?  Do you remember if you had any blistering or burns?  If you do mx are you going to do recon?  If so, you might want to find out if a skin sparing mx is a possible choice for you.  Best of luck.

rhonda47

Dear Carolyn,

I was diagnosed in 2006 with angiosarcoma of the breast..

caused by radiation treatment for breast cancer in 2000.

My original surgeon mis-diagnosed the fingernail sized mark on

my breast - saying it was fluid.

I felt it wasnt.. and lymphoema clinic doctor was certain it wasnt also..

I went back - a biopsy, and bingo - angiosarcoma...

This surgeon was mumbling about taking part of the breast,.."saving" it ..

which pleased me of course, but I went for another opinion and took myself off to a large

cancer hospital here in Melbourne, Australia ... a radical mastectomy and they found

3 masses of tumour hidden in the breast...

Wow - what a nasty thing this is.

Anyway I'm very well.. no side effects..have decided not to have a reconstruction..

too big an operation and loss of that poor breast doesnt worry me at all...

I hope you have had some successful treatment also...

Wishing you all the best..

Rhonda

Megsie

Hi all,

My sister has been diagnosed with angiosarcoma of the breast. She is Australian, but lives in Auckland. She is 65. In September 2012 she had a mastectomy of the left breast, and three follow up operations since then, but the dreaded cancer is still lurking. ( a few bruise spots still evident in her chest around the operated areas.)  She has pretty much run to the end of knowledge regarding this disease in Auckland, and hopes to find doctors in Australia, who are more familiar with this disease. Can any one help with names of oncologists who have familiarity with angiosarcoma of the breast?

thanks a lot and best wishes to everyone who is suffering from this terrilbe disease.

(any news or information for me is welcome!)

from Meg

Megsie

Hi Carolyn,

Three years later, how is it going now? would love to hear.

From Meg

Megsie

Hi Rhonda,

I hope your treatment has gone really well, and that you are better now? Can you give me any move information on how you have gone in the subsequents months since you original post....I need more information about this condition for my sister who has been diagnosed with angio.

Hoping you are well.

Best wishes from Meg

rhonda47

Hi Meg:

I must admit I forgot about this forum . .. I am sorry for such a long period between replies...

Treatment for angiosarcoma was in 2006 so have had trouble free years since then, until lately having noticed a bruisey mark below mastectomy site.

Oncology surgeon Professor Henderson at Peter Mac here in Melbourne said he thinks it could be just a mark from bra but I will go back for biopsy in a month if I am still worried about it. Of course I am still worried and indeed may go back sooner. Am going braless which is not a good look but I want to rule out the mark is from wearing a bra.

How is your sister?

Rhonda