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Radium Induced Angiosarcoma following BC

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Member

Re: Radium Induced Angiosarcoma following BC

Hi Patsy , just found your two posts .... I am really sorry to hear that you too have possibly got angiosarcoma . I was really gutted when told that mine was caused by radiotherapy treatment for breast cancer in 2009 !!!

Have you had a skin punch biopsy yet ? You really need that to have it confirmed as it doesn't seem to show on scans . My ultra sound scan was clear !!! Luckily my surgeon was really thorough and did the skin punch in Dec 2014, I was diagnosed on Christmas Eve .

I am being treated by the Sarcoma team in Leeds and had a radical mastectomy on 13th Jan this year . No other treatment on offer ....saw the oncologist 3 weeks ago and he was concerned by a patch on my scar , so went back for another skin punch two weeks ago . Also concerned by lump in remaining breast , so core biopsy on that . Waiting for results of these now ...appointment for that on Tuesday 26 th . Waiting is such a stressful thing !!
Hope you get some news soon ...
Hugs, Jill xx
Member

Re: Radium Induced Angiosarcoma following BC

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?
Member

Re: Radium Induced Angiosarcoma following BC

Although this thread is quite old I am hoping that there may still be some members around who contributed to it . I would love to be in touch with others affected by this dreadful disease .
I was diagnosed on 24th Dec 2014 with angiosarcoma , as a direct result of my radiotherapy treatment for breast cancer in 2009 .
I had a radical mastectomy on 13th Jan 2015 removing left breast and chest wall muscle . Path report showed grade 3 , 3 cm tumour , but hopefully clear margins . Am waiting for sarcoma MDT meeting to find out next steps .
Hugs ,
Jillx
Member

Re: Radium Induced Angiosarcoma following BC

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
Member

Re: Radium Induced Angiosarcoma following BC

hi, i have just posted on here about my self, now im going to ring the RM and see if they can give me some answer. How are you doing now ? x
Member

Re: Radium Induced Angiosarcoma following BC

Yes me
Member

Re: Radium Induced Angiosarcoma following BC

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 

Member

Re: Radium Induced Angiosarcoma following BC

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
Member

Re: Radium Induced Angiosarcoma following BC

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!
Member

Re: Radium Induced Angiosarcoma following BC

Hello Vanessafromvenus


Welcome to the forums.


Whilst waiting for other users to come along you may find it useful to contact our free helpline on 0808 800 6000, opening hours are Monday to Friday 9.00 – 5.00 and Saturday 10.00 – 2.00.


Best wishes


June, moderator

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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.