Radium Induced Angiosarcoma following BC

Is there anyone out there that has been diagnosed with radium induced angiosarcoma ?
I was diagnosed with BC in 2010 , had surgery and 4 weeks of rad therapy.
Last Christmas a “Bruise” appeared where the lump was removed.
After weeks of tests and examinations I was told it’s a rare cancer caused by a rare re-action to radiotherapy.
Now had mastectomy and LD reconstruction to remove angio tumour .
Would like to chat with anyone who has had similar, thanks.

Hello Vanessafromvenus

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Best wishes

June, moderator

My mother was diagnosed with breast cancer in 2003 and treated with conservative therapy - lumpectomy and radiation, no chemo. She has had no recurrence of her original breast cancer; however, in Dec. 2009, she developed secondary breast angiosarcoma resulting from the radiation she recieved in 2003. This is a rare consequence of the radiation.
Angiosarcoma is an aggressive cancer of the lining of the blood vessels that can arise in any part of the body and requires treatment by very experienced sarcoma oncologists and sarcoma surgeons. It is extremely important to not delay meeting with these experts in order to get the right treatment as quickly as possible. Most doctors, including oncologists, may never see a case of this cancer during their entire career.
A patient-driven non-profit has been created to provide information on this rare cancer: www.cureasc.org and we have members worldwide including several in the UK. There is a very active discussion and support group on Facebook and the group can be found by searching on: “AngioSarcoma Cancer”. There are close to 1,000 patients, family members and friends on that site. This group keeps up with all the latest treatment and information on this cancer. You are not alone!

Hi, I hope you are keeping well, I was originally diagnosed with lobular bc in May 2003, had lumpectomy with nodes clearance, followed by 6 months FEC chemo and 5 weeks radiotherapy, and 5 years tamoxifen… For 10 years my life gradually returned to normal and I learnt to live without fear of its return. In July 2013, I started getting horrendous pain in my left breast and noticed it became very bruised, I had a biopsy at my local hospital which was incredibly painful so much so that I got up from the table and promptly passed out…it took a few weeks for my hospital to diagnose Angiosarcoma but once they did they referred me to Leicester for consultation, unfortunately the consultant was on holiday so I rang the Royal Marsden to see if I could see one of their consultants quicker… The Royal Marsden saw me at the end of August and after punch biopsy confirmed I would have a mastecomy and ld flap on the 18th Sept…I went home after 4 days to recover and went back to the RM on the 10th October (my 51st birthday) to be told that although they removed 15cm by 15cm they didn’t have clear margins so chemo would be necessary…I started my first session of caelyx on the 4th December 2013, this has caused a problem with my heart but it is being monitored by the Royal Brompton, I am post 3 chemo now and wobbling a touch but keep thinking push through 3 more months and life can start to return to normal!!! What treatment course are you on? How are you dealing with it? Do you wish that there was more positive info on this form of cancer? I so hope you are ok, sending you big hugs x x

Hi, not been on here for few years when i was first DX with breast cancer in 2006, had surgery , 7 months chemo and 4 weeks rad therapy , been feeling un well for past year and keep going to my GP who was only intreasted in my high blood pressure then losing weight quickly from november  and found lumps on my scar.Had appointment with onco for january 8th which was sent out by mistake as i had been discharge from there  but i still went and told him and showed the lumps and being sent away as he said it was scar tissue! i managed to get the GP to refer me back to my breast surgeon 5 weeks ago and he said nothink to worry about but i push the issue and in the end had a biopsy done to told 4 weeks ago its Radium Induced Angiosarcoma. I was told that the Royal Marsden want to deal with this and was surpose to go back to my local hospital yesterday to get a up-date and result of my CT Scan and they phoned me yesterday morning to cancel it till next tuesday as they not herad  from the Marsden yet. I am so angery and upset and feel like yet again im just a number as i was miss diagnosed in 2006 for a year.

Do i ring the Marsden and chase them up ? also i would like to talk to any one else who has this sort of cancer, i feel so alone . Thanks 

Yes me

Hi sofie

I am sorry to read that you have this worry, please feel free to call our helpliners talk things through, lines open today 9-5 (weekdays 9-5 and Sat 10-2) on 0808 800 6000

Take care
Lucy BCC

Hello I’ve just been told pretty sure I have angiosarcoma just waiting for scans to confirm. Told me it was caused by radiotherapy which is pretty gauling just hoping a mastectomy will take it away. What stage are you at?