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Angiosarcoma

Member

Re: Angiosarcoma

Thank you Sue and Lynne for your support and caring posts . I can't tell you how much it means ...am feeling rather emotional at the moment . It has been a real roller coaster ride since I was first diagnosed with breast cancer in 2008 ....then thyroid cancer in 2012 and now this in 20014 .
The Sarcoma surgeon was lovely yesterday and said he was pleased with the way my wound was healing . There is no more treatment to be had , so he is referring me to Oncology for future monitoring .They are part of the MDT so if any problems arise they can refer me back to the Sarcoma team quickly . When I asked about a prognosis he said it wasn't a good cancer to have and my tumour was particularly large , but each case is different (heard that before lol ) so it was impossible to predict what my specific cancer would do in the future !! At least he didn't tell me NOT to start reading " War and Peace " LOL .
So all in all it was as good as I could get ...just have to live each day as it comes .
Waiting for my oncology appointment then perhaps will start to think of a holiday .
Hope everyone is keeping well .
Love, Jill xx
Member

Re: Angiosarcoma

Hi Jill,
I have been following your recent posts and I want to thank you for bringing your unfortunate situation to our attention.
I agree totally that you should have been forarmed with the possible side effects and can understand that you must be feeling very angry and many other emotions too.
I sincerely hope that your forthcoming appointment will give you some much needed hope. Sending you lots of positive vibes and a big big hug! Take care and keep us all up to date with any developments. Xxx lynne.
Member

Re: Angiosarcoma

Hi sue,
Know exactly what you mean about over thinking everything! I do the same and it always causes me extra worry and anxiety.
Good luck with your forthcoming treatment. My radiotherapy starts on 12th march eeeek!!! Take care xxx
Member

Re: Angiosarcoma

Jill, hope your appoinment went well today

 

Sue  xx

Member

Re: Angiosarcoma

 

Thanks for your comments ladies, I always seem to overthink everything!

Just can't help thinking there is an 80℅ chance there will not be a recurrence, the tumour was grade 1, I am taking letrozole, which is working as it shrunk my tumour by 50%, surgeon got clear margins.......ho hum - guess it will be done,  but know I will be screaming inwardly at each treatment!

Take care everyone  Sue

Member

Re: Angiosarcoma

Everyone's case is so different Bobtail, so you have to weigh up the pros and cons carefully and look at your own risk situation .
I already had lymphoedema of the left breast following my axillary clearance , which immediately put me at higher risk , I might have gone ahead with rads even if I had been warned , just wish I had been able to have that choice , but it was never mentioned . I think it is important to be told the truth and involved rather than just have treatments thrust upon you . Good luck with whatever you choose to do .
Hugs,
Jill x
Member

Re: Angiosarcoma

Hi bobtail,
Please think carefully regarding not having your planned radiotherapy. If you have a 20% chance of the cancer returning without radiotherapy and a less than 1% chance of developing a angiosarcoma from having radiotherapy, its surely worth the risk? My oncologist said that out of the 1000s of people he treats with radiotherapy a really small number develop it. Im just about to embark on my radiotherapy and although like you I have reservations I think the return of the cancer troubles me more.
Take care and I hope you reach a decision which is right for you soon. Xxx
Member

Re: Angiosarcoma

Good luck with your appointment on Monday Jill. I am seriously considering refusing radiotherapy, although the oncologist said there was a 20% chance of recurrence without and did have 1 positive node, but I just don't feel comfortable with it

Member

Re: Angiosarcoma

I seem to be a lone voice with this horrid disease , but will continue to post as I feel it needs more publicity . Am going to see the sarcoma team on Monday as a six week follow up to my radical mastectomy . Hopefully will find out more about any treatment plans and prognosis .
Hugs,
Jill xx
Member

Re: Angiosarcoma

Thanks Nel , but there doesn't seem to be anything about this aggressive cancer in that thread .
Hugs ,
Jill x
Member

Re: Angiosarcoma

Thank you for the link Jo , I have posted on that thread , although as it is rather old am not sure if anyone is still there to reply . I will also give the helpline a call to see if there is any info they can give me . All I have found through my own research is very depressing . I feel so cheated that the treatment supposed to help me is going to kill me !!
Hugs,
Jill x
Member

Re: Angiosarcoma

Hi lavendersblue

 

I have done a search of this website and have found a thread from 2013 where angiosarcoma is discussed.  I have put you the link below.  As this appears to be quite rare you may find it helpful to give our helpline team a ring and talk to them about your concerns, they will be able to research any up-to-date information there is out there on this condition in order to support you.  Calls to the helpline are free from landlines and most mobiles 0808 800 6000.  Lines open at 9am today through to 5pm (weekdays) and 10-2 Saturdays.

 

Heres the link: http://forum.breastcancercare.org.uk/t5/New-members/Radium-Induced-Angiosarcoma-following-BC/m-p/741...

 

I hope you find this helpful.

 

Take care,

Jo, Moderator

Nel
Member

Re: Angiosarcoma

Hi lavendersble if you look in the post directly below yours. You make get some information there x
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Member

Angiosarcoma

I was diagnosed with angiosarcoma on Christmas Eve , a direct result of the radiotherapy treatment I received for my breast cancer in 2009 . I can find no reference to it anywhere on this site and was wondering if there was anyone else out there suffering from the same problem ?