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JannyB's avatar
JannyB
Member
15 days ago

Angiosarcoma (my purple spot)

Hi Everyone,
I’m writing this in the hope that it will help others in being alert to this disease which is so rare (US figures state 1 in a million people get this). I had radiation and a lumpectomy in 2016 for breast cancer and got lymphodema in that left breast, this seems to be what most Angiosarcoma cases had previously. I have done my own research with every medical person I meet and only 1 nurse has seen it. Not my top Oncologist, not my Doctor and most importantly not the Emergency department at the hospital I presented to by the time the thing was sticking out of my breast like a purple raspberry. At the emergency they did a scan and sent me home saying nothing was wrong.  A few weeks later I asked my Doctor about it and she sent me to see an Oncologist who ordered a scan and a biopsy. My breast was full of Angiosarcoma which is very agressive. The purple growth outside my breast had doubled in 2 months.  I would be dead now if I had accepted that first diagnosis.
If you ever get something on your breast the is reddish purple please demand a biopsy. It could save your life.  
I’ve since had a double mastectomy (the other breast by my own request). As it’s now mid April and I’m feeling great no further treatment is planned but I am waiting to see a Sarcoma specialist for a chat. I will probably have to be scanned in the future as it is said to be aggressive. My faith in God and a herbal tea that I took when I had breast cancer is getting me through at present.

Lots more of love

Jan

 

 

breast-cancer

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  • arpie's avatar
    arpie
    Member
    14 days ago

    SO sorry to read of this development, JannyB  and thank you for alerting us to it.  How shocking that the Emergency Dept sent you home without referring you on for further investigation/biopsy ....  Terrific that your GP sent you to an Onc who 'did the right thing' by you xx

    Well done on being so proactive & I am glad that you are recovering well from your surgery xx

    Take care & all the best xx

    • JannyB's avatar
      JannyB
      Member
      14 days ago

      I said to my Oncologist “You saved my life Dr Wong”, he said “No Jan, you saved your life by not accepting that first response at the hospital”.

      Arpie, thank you for the good wishes. The usual prognosis on Angiosarcoma is 2 years because it usually metatises pretty quickly but I’m going to beat that. I’ve seen on utube a Doctor in America who is 16 years from diagnosis so it is possible! God is the God of miracles so I’m praying for healing.

      Jan