Angiosarcoma

Hi 1ANNEHM 

I'm pleased to hear that you are getting support from the Macmillan nurses and sorry you are undergoing all this uncertainty and anxiety. 

I had to look up AS and it says how rare it is, which is most likely why you haven't received any response to asking if anyone has any experience of it.

I know it's a lot easier said than done, but I guess the people who will have seen practically everything will be your oncologist/consultant and if they don't think it is AS, then perhaps try and ease your concerns a little by the fact that they feel that it's not AS.

I'm sorry I can't help more, but maybe by answering your post is back to the first page and there might just be someone who has some experience of AS.

Kindest wishes, Lesley

Has the consultant explained why she was certain it was not AS? Also, what does she say it is? From what you say, I am guessing you may do better if more information was made available to you in the form of a really detailed explanation. Is there an option to get that from the consultant? 

Thanks GreyCats, no the consultant didnt say why she didnt think it was AS nor what it could be. I'd never heard of AS and was quite relaxed until I thought I'd find out more the next day.  I was really shocked as the images on Google are identical to mine.  They could be my photos.

They had a case conference about me (and others as per their usual team meeting) and told me all the team thought it wasnt AS, to monitor it and the consultant radiologist will review on his return from holiday in 2 weeks.

I will ring them then for an update.

Thank you.

This is a tricky one. What would the treatment pathways options be for you if this were indeed AS?

It seems there is a choice now between two options: one, to accept what you are being told, keep monitoring, and try not to think about it too much otherwise. The other option is to keep insisting on being given answers, and keep digging for more information (which is different to opinion.) Quesations I might ask had this been me:

1.  Is it possible that there is AS in the breast and the biopsies just missed it?

2.  If the answer to #1 is yes, it is possible -- how do we find out for sure?

3.  If the answer to #1 is no, it is not possible -- how and why do we know that with certainty?

4.  Assuming this is not AS, why does it look identical to images of AS and what is it then?

5.  If the answer to #4 is vague and along the lines of, "we don't know" -- what needs to be done to find out and how soon can we do it?

I am going to keep an eye on this thread in the hope that you will let us know what you decide to do and what happens. This is not only about physical health but also about peace of mind. The doctors may not always have all the answers, but in such situations I would like them to explain to the patient in as much depth as that patient wants to hear. To me, this is all part of good care, and a patient who feels well-informed will be enabled to made more confident choices.

Can you send pics to GP for dermatology referral as possible AS. A biopsy of the affected area could give you an answer faster through deem (if they are happy to biopsy a nipple)

According to the experts from Johns Hopkins unless the punch biopsy is done directly into the purple spots it wont be found.

I had 3 PBs - 1 into the area the scan showed TISSUE thickening, 1 into the puckered area under the original lumpectomy SCAR and one on the cleavage side .

None were in the purple spots which all seem to be on the aureola/nipple.

Also according to the experts there is no cure or treatment.  It is caused by radium treatment and 70% die within 12 months, 30% make it to 4 years.

It is now 3 months since it appeared.  No worse, no better.

I feel fine, if anxious.  I dont think it's any more painful than before. But I would like an answer one way or the other.

X

Pictures have been sent to consultant radiologist for his opinion as its radium treatment that causes it.  He still on holiday I'm afraid.

So well written and so true.  Being informed is the beginning and then the patient can move on from that point.  
Barbara

The MDT may well be right and this could be something else entirely that immitates the appearance of AS, but the only way to be sure, by the sounds of it, is to insist on a biopsy from the areas that would give definite answers. I am wondering why they have not done that, and I am not discounting that they may have a good reason, but they need to tell you that too, if that is the case. "We don't think it's AS but we have no idea what it is" isn't really good enough.