Hi, is there anyone out there who has known or does know someone who has had an angiosarcoma caused by radiotherapy? I have had this diagnosis and treatment and would like to know how others have dealt with this.
Hello there..I have had two operationss to rid me of an angiosarcoma which occurred five years after radio therapy for breast cancer.. The first grew near the originall cancer op site. I was told it was very unusual. By the time it was brought to attention of my specialist it had grown very large and bled a lot. The op to remove it went well. He left a very large margin round it. Three months later I found another small but similar lump like a blood blister fight beside the previous op scar. Very unlucky I was told and the only treatment offered was a mastectomy. So I had that ten days ago. I am happy to chat about it. I'm glad to know I'm not alone. None of our practice doctors knew what it was.! I live in Sussex.
Many thanks for your email- I have had to change email address as it is so long since I have been on here and naturally fprgptten all details.
My AS sounds very similar to yours- I have had 3 big operations and a mastecnomy on both breasts, 28 chemos and my AS came from radiation after i was diagnosed with breast cancer as they gave me the radiation as I could not have chemo as I have got MS as well. When this AS appeared and was diagnosed I promptly had 2 heart attacks from the shock of the whole thing!. SO the past 4 years have been all a bit of a nightmare and as you know it is so rare- I live in NOrthern Ireland and I am the only person who has AS here= a lot of people have sarcoma but not AS. I have attended RM in London on one occasion as I wasnt happy with what they knew here and I will continue to use them if I feel the need.
I have had my up and down days ( a lot of those!) and some days obviously are better than others. But with counselling and trying to keep busy Im trying to forget and check daily. I am 62- what age are you and did you get it the same way as me from the radiation.
They know a lot more about it in the States and a lot more trials there- but to get over there is a nightmare with insurance. I try and remain positive- but I couldnt believe that I was the only one over in BElfast with this. Felt a but left out!! I am in the process of doing a documentary for the BBC about this disease and making people more aware as nobody knows anything about it ot even heard about it.
Hope you are getting over the op now and feeling not as sore and also a bit more positive. By the was my name is Evelyn and as I said 62, but dont act it!!!
Lovely to hear from you and would love to hear back again
