Angiosarcoma

Public Archive
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I was recently diagnosed with primary angiosarcoma of the right breast.  So technically, I don’t have breast cancer, but a cancer that happens to be in my breast.  Unfortunately, my local hospital failed to diagnose my cancer 16 months ago when I found the lump, as a biopsy was not considered necessary and we left with a categorical reassurance that “this is NOT cancer” and the ‘advice’ that I would ‘just have to live with it’.  Thankfully, a call back after a routine mammogram in September took me to a teaching hospital and they biopsied the (much) larger lump immediately.  There was still some disbelief around the diagnosis due to it’s rarity (0.4% of primary breast cancers, apparently) and more tests to confirm it.  I am due to have a mastectomy with removal of some of the chest wall next week after a long two months of scans and tests (it’s a full time job, this cancer business!).  I’ve found the threads around preparing for the hospital stay very helpful and am learning the lingo and abbreviations :slight_smile:  I’m under the care of the QE in Birmingham and it’s a great hospital, but I wonder if the involvement of two teams (breast and sarcoma) explains why I have to chase every result and information?  I’d really love to know if anyone else has angiosarcoma; I’m feeling the rarity at the moment, and not in a good way!

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Hi Tat4tit, 

I am sorry to hear you are having a difficult time. I am sure some of our users will be along soon to offer their support. 

You may also wish to try posting in our ‘Living with and beyond breast cancer’ section of the forum as this section has more active users. You can find this below.

forum.breastcancercare.org.uk/t5/Living-with-beyond-breast-cancer/ct-p/living_with_beyond_breast_cancer

In the meantime do give our support line a call at 0808 800 6000 who would be happy to offer their support and advice.

Best wishes, 

Lizzy 

Digital Community Assistant 

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Sorry can’t help with the angiosarcoma bit, but falling between 2 stools,of even 3 is my experience. Between surgeons, oncologist and radiotherapy the communication can be dire. I have had to chase up lots of stuff myself, l find consultant secretaries a really good resource to find out if jobs/ referalls have been completed,and to get them done.

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My hospital offered copies of all clinic letters right from the start, if info goes to my GP it also comes to me. Worth asking for ? i find it a very useful summary and planning device.
Good luck with all
LL xx