Angiosarcoma

Hi Phyllis 

your GP is trying to rule out RIAS radio induced angio sarcoma. He’s not saying it is this but I understand how worried you must be. There is a fantastic support group charity called sarcoma UK and their helpline is manned by people who have a wealth of experience in sarcomas of all types, why don’t you give them a call tomorrow ( 10am till 3pm) and chat through your concerns I’m sure they will be a great help to you. I myself had primary ( not caused by radiation) AS of the breast. 

Hi LottieLove ,

thankyou for your speedy reply . I will call them .

how are you doing now with your primary Angiosarcoma diagnosis ? have you had treatment and how are you feeling about everything ? 

thanks for the reassurance . Everyone on this  forum knows the effect of worry and waiting for results so it’s very kind of you to reply - it does make a difference . Thankyou .

I have primary angiosarcoma too, would be interested to hear about your experience. Was diagnosed when I was pregnant and had surgery to remove, it’s now back 2.5years after. I was pretty positive until then…

Hi Claire 

I was diagnosed Nov 2020 with primary AS in my left breast. Had lumpectomy followed by radical mastectomy Dec 20. No further treatment. Nov 23 AS appeared in right breast another radical mastectomy Jan 24. Nov 24 AS appeared as 2 small ground glass opacities in right lung and I have just been accepted into a trial to receive SABR radiotherapy which will begin next couple of weeks. ( I’m in Scotland but believe that England will give you this without being part of a trial) 

I don’t have any symptoms it was my routine surveillance CT scan ( every 3 months) that picked up the lung mets. I had another CT 27/1 and chance has been minimal which is good news. 

don’t give up hope there are still treatments that can help xx 

Sarcoma UK have lots of support groups around the UK if your not a member already I would recommend you join one they have been a great help to me and lots of others too. 

Thanks so much for sharing your history, it’s really helpful seeing as this is so rare it’s tricky to gauge anything from. I was really hoping to get through the 5 years without anything coming back, but that wasn’t on the cards. 

I’m having surgery on Tuesday and hopefully this will be the last of this for now, but I can’t help feeling like my days are numbered. I wouldn’t care quite so much but my kids are so little. Just want to get old and wrinkly and watch them be grown ups. 

Anyway, I’m catastrophising and thinking 10 steps ahead which never helped anyone. I’d find it really helpful to stay in touch! How old are you? Where are you? I’m 38 in kent

I think it’s totally normal to go over all the different scenarios in your head try not to think the worse because there is always a plan.

i live in central Scotland I was 59 when diagnosed and I have 5 grandchildren oldest 9 youngest 2 are 3 months Oliver and 7 weeks Milo. Like you I want to see them grow up but from a grandmas point of view.you are welcome to join our little support group I run which is supported by sarcoma nurses and sarcoma Uk. If interested let me know it’s a safe place to talk xx 

So sorry to hear you have gone through and still going through so much . I do hope this recent surgery goes well for  you and that you can muster up the courage to look forward . It must be so hard for you and Im sending you my best wishes .

I’m 72 and I have two grown up girls and one granddaughter . No matter how old they are you will still want to know about their future lives and it’s a very painful thought to have  that you might not . All you can do is be positive - easy to say I know - and look after yourself both physically and emotionally ..

 Try to eat healthily and go for a walk  in the fresh air every day if you  can - it gives focus .practice deep breathing if you can’t sleep and share your thoughts and worries .

Thinking of you 

C