Primary angiosarcoma, just diagnosed

Hi Claire

I'm sure there are others with similar diagnosis on here. I think well differentiated is a good sign (though I'm not medical) and if they're confident surgery can get rid of it even better. I'm sure this diagnosis has been hard for you and a huge shock...surgery is a potential means to cure if it's only in this one place. They will follow you up with scans regularly...the surgeon will be able to advise on stats and recurrence rates but I would focus on this surgery and getting better. I'm sure others will comment who have similar diagnoses x

Hi Claire I was diagnosed with a undifferentiated pleomorphic sarcoma grade 3 in my breast in April . I was referred to the royal marsden sarcoma unit and had a mastectomy end of may .I have just started radiotherapy and am having 30 sessions. pleomorphic mean aggressive and they could not tell type of sarcoma I had which is why they called it undifferentiated  .Ionce I finish my radiotherapy I will have scans every 3months for first 2years then 6 monthly..  they told me surgery reduces the risk of it coming back and so does the rafiotherapy. Too be honest I was just glad to get rid of it. It is a scary time I know and sarcomas a rare which makes it even scarier but there is a lot of support out there . My consultant did give me some statistics but to be honest I have not thought about them and could not tell you what they were. Don't look on Google I did that when I first was diagnosed. Speak to your consultant he will answer any questions you have. I wish you well .take care

Thanks for replying! Yeah it definitely was a shock, I found the lump when I was pregnant so thought it was likely something related to that, at least I got it checked and didn’t assume it would be ok! It is meant to be good that it’s well differentiated but it’s a bit odd because that’s meant to mean it’s slow growing, but it appeared quite quickly. I’m having a CT scan to check it’s not spread but the surgeon seemed to be confident it wouldn’t have, not really all that sure why though. Will keep everything crossed.

I don’t know what grade mine is or anything yet, I guess they’ll do the CT scan and figure it out from that. It’s interesting that they didn’t know what kind of sarcoma yours was, similarly they didn’t know whether mine was a sarcoma or another kind of non cancerous growth of blood vessels, I thought things were quite clearly malignant or not but it seems it’s not quite that straightforward. I did do some googling when they said sarcoma might be a possibility, and it wasn’t a nice experience! As my doctor seems to think surgery should treat it, that’s helped reassure me a bit. I’ve been referred to the Royal Marsden as well, so we may have the same consultant! 

Hello Claire

Just before Christmas 2022 my left breast turned a funny colour which spread to cover the whole left breast in a very short time.  I had cancer in that breast in 2010.  Underwent lumpectomy,  8 rounds of chemo and 15 radium.

Also had cancer in right breast 2020.  No chemo but lumpectomy and 15 radium.

I was seen promptly by consult, had scan but he thought ut was just bruising, keep an eye on it and go back I  8 weeks.

It went worse so rang hospital.   Saw another consultant who thought the same.

It went worse!  So an appointment was made for me to see the surgeon who had done the last lumpectomy. 

She was puzzled but not worried.   Did 3 punch biopsies which were clear.

16 weeks later she found another lump and sent me for another scan.  This was not considered a problem. 

At my discharge appointment surgeon mentioned angiosarcoma but said it wasnt that.  OK I thought.  Fine.

A couple of days later i remembered the word and thought I'd see what i didn't have.

The first Google pic was identical to my breast.

I've since had unsatisfactory conversations and two letters telling me i dont have it.

My worry is, though, on the research it says AS is so rare and the biopsies must be done in the purple spots to determine what it is.  This wasnt done.

Six months later the colour has remained the same but the breast now seems to be easily marked.

I wonder if you are able to share your of diagnosis?

I'm still anxious.

Good luck.