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
Questions for your surgeon/medical team when diagnosed - ILC based but also relate to other BC types
This document has a huge number of questions that you may like go over - and put to your Surgeon, Onc, and/or Medical team at some stage of your diagnosis and treatment ..... Altho it is based on those with Invasive Lobular Cancer (ILC) .... many of these questions also relate 100% to all BC Types .... the more questions you ask, the more you understand your diagnosis. Go thru them and see if any may relate to you. If some questions specifically refer to ILC - you could replace ILC with 'your' BC type ..... and see if you'd like to put any of them to your own medical team? https://lobularbreastcancer.org/wp-content/uploads/2023/03/Questions_for_My_Doctor_FINAL_-2023.03.21.pdf