PASC, Dx 5/2008, London
I’m married with 2 daughters, 5 grandchildren and a cat. Born in 1953, with relatively good health and no incidence of cancer in any of my family that I can trace. I work for an insurance company in London but since diagnosis I have been thinking of retiring, and with this aim I have recently become involved in a voluntary working party within the health service representing patients, and liasing with healthcare professionals, consultants etc to improve the service offered. This is my story.
Early 2008 I thought my right breast seemed larger than the left one. After several months of frequent checking I eventually visited my doctor who thought there was nothing to worry about, but just to be on the safe side she referred me for tests.
Fortunately I live within a mile of the Royal Marsden so was seen there very quickly in the first instance. After several biopsies I was referred to the sarcoma Multi-Disciplinary Team where angiosarcoma was confirmed in May 2008. Through the wonders of private medicine (I knew I went to work for a reason) I had a full mastectomy in June where it was found to be angiosarcoma, some 11 cm (4 inches) grade 3/stage 2. This operation was followed by some 33 doses of Radiotherapy where I managed to work through all the treatments right up to the last week when I was admitted to the Royal Marsden for exhaustion/dehydration/2 infections (all the skin came off) and because they wanted me to finish the last 5 sessions.
All was clear until 2009 when a lump appeared on my back, followed by some red plaques. Oops! This was confirmed to be a recurrence of the angiosarcoma and was removed with just about clear margin on the skin but no follow up treatment was possible as it was too close to the spinal column for RT. I have been advised that the only chemo shown to make any appreciable different to this type of cancer is extremely toxic cocktail which they are holding back (probably as a last resort if/when it returns).
I am now living in that scary world of being a NED (no evidence of disease) but waiting for it to come back.
May 2008 diagnosed Angiosarcoma in breast treated by mastectomy in June 2008 and RT in July – Sept 2008 (33 doses)
May 2009 diagnosed recurrence in muscle on back and surrounding skin treated by wide local excision. Clear margins on “lump” barely clear margins on skin