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.
My mom was diagnosed with secondary breast angiosarcoma in Dec. 2009 (triggered by radiation she received for breast cancer in 2003). She has had chemo (6 cycles of Gemzar + Taxotere) followed by a radical mastectomy, and as of Dec. 2010, there is no evidence of recurrence. She will be getting more scans in a couple of weeks to see how things are doing. We live in the US and her primary medical team is through the Sarcoma Center at MD Anderson in Houston, TX.
There is a LOT of information about your angiosarcoma (as well as other forms) available through our "Angiosarcoma Awareness" support group, and I believe we have one if not more members who live in the UK. You can find us either through Facebook (search under groups for "Angiosarcoma Cancer") and through our non-profit website: www.cureasc.org
Wishing you the best, and look forward to connecting with you!
I have just read your message and see that it was dated March. I hope you are ok and getting some treatment. I too have been told this week that I Have Angiosarcoma caused by the radiotherypy I recieved in 1997 after my breast canser was removed. It is difficult getting information and what treatment that is available. I get my results on Wednesday to see if the cancer has spread. Please if you would like to chat get in touch. I live in Lancashire UK. Most of the info. seems to be from the USA. I hope you are fighting dont give in.
My mother was diagnosed with angiosarcoma. Usual scenario: triggered by radiotherapy 15 years previously.
I'd like to know if there's any kind of scan that an see it - MRI or CT?
It began with an evident problem on the skin in the area of the original radiotherapy, but the little information I can find about it suggests that it can re-appear anywhere else. She's now manifestng other symptoms that have me worried it's attacking an area around the ears (months of feeling light-headed that have now escalated to random moments of passing out).
I'm so sorry to hear that your mom is battling this cancer. Is she currently being cared for and monitored by a sarcoma expert? That's very important since angiosarcoma is so rare and aggressive.
Yes, there are imaging techniques that are capable of detecting and monitoring metastases (CT, MRI and PET), but they are all different techniques looking for different characteristics of tumor activity. My mother's sarcoma expert, Dr. Ravi at MD Anderson Cancer Center in Houston, Texas has only used CT scans to monitor her status.
Please visit the two internet sites below to connect with a large group of angiosarcoma patients and their families. Although the group is based in the US, the members are located all over the world with several living in the UK who can provide you with information on local resources.
I was diagnosed with BC in 2010 , had lumpectomy and rad therapy. Last November a "bruise" appeared where my lump was removed and after biopsy I was told I had radium induced angio sarcoma.I had a mastectomy and LD reconstruction in April of this year. I live in Kent,UK. I have visited the angio web site but couldn't find any Brits!
I have been told that recurrence is high and that I am at risk of future metastases locally or systemic , most probably in the lungs. I have to have chest CT every 4-6 months.
Would be nice to chat to someone in the UK that can relate to my situation.
Hi yes I am in the same situation as you. I was diagnosed in November 2014 and after 18 chemos and a LAPD it has now come back again this weekend. What treatment were you given and how is yours now. Evei
I am like you. It has a high recurrence. It's scary stuff but I had the 18 chemos which kept it at bay for 10 months but now it's back I'm not sure what the next move will be. I just want rid of it for ever! How are you going st the moment evei
