52 yrs., Weston Super Mare
North Somerset, England
Dx 9/5/05 PASC
Finally diagnosed with Angiosarcoma, primary of left breast on 5 September 2005. This was after months of being told it was definitely not cancer as breast cancer is not painful; told to take starflower oil for a month as it was menapausal, and ‘my breasts’ fault! Rewind to the previous December 2004..woke up one morning, ready for work….noticed I was losing blood…period not due and no period pain present either. Blood loss getting worse, went to hospital. Blood pressure down dangerously low…kept in overnight…found nothing! Gave me meds to stop bleeding. Put it down to being 47 and menopausal..ok. I believe personally this could have been the trigger. Anyway, 3 months later..noticed small discomfort in boob….beginnings of a pebble shaped lump but nothing to shout about…assumed it was ‘menapausal’. This grew nicely and in May 2005 went to GP. Sent off to breast clinic….lots of tests done for standard breast cancer….nothing except they kept ‘hitting blood’ with biospy etc. Sample finally sent to path lab in June, despite the fact that they said it was definitely due to hormones,and assured me it was NOT cancer. No bruising was present throughout, just a pebble growing more and more….pressing on nerves on my left arm, becoming very painful at times too. I had mastecomy on 23rd September 2005 by a standard breast surgeon at Weston General Hospital. Graded as more than 10% grade 3 so was placed in the care of Professor Hassan in Bristol Royal Infirmary. Offered intensive adjuvant chemotherapy, was warned that this can be fatal and it was my choice whether or not I had this, as there is no evidence that it helps. Accepted this and tolerated 4 rounds (out of 5) as my heart also stopped at one point. then had radiotherapy for 4 weeks (or 24 days). Regular scans followed. I used the NICE guidelines to get myself transferred to the Royal Marsden Hospital in London (special sarcoma unit) under the care of Prof Judson. He believes that scans are far too much radiation – over 60 times more than x ray; radiation can cause cancer, he also believes stress is not good for cancer either..so waiting for results can be too stressfull. Instead I got 3 monthly x rays on my lungs (because realistically that is the only place they can work on if it goes there)…and results within minutes. This went to 6 monthly checks. I have had no recurrence to date. My next appointment is 23rd September which is exactly 5 years! I consider myself cured.
I refuse to wear a prophesis (cant even spell it) I am lucky to be small breasted so it hardly shows really. If people dont like it, then they dont have to look. For me, to place a false thing in my ‘adapted bra’ would be a constant reminder that I had had angiosarcoma, so perhaps that is my denial. I like denial, it suits me and I wear it well. I dont read anything on the internet connected to angiosarcoma because it scares me and sticks in my consciencness…and I dont like that…not comfortable! I made a promise to myself (after losing all five of my other angio friends on Sarcoma Alliance) that I would continue to stay on the email support list of Sarcoma UK and offer support and comfort to anyone who is diagnosed with this. I also want to shout ‘Im here!’ to other humans who have been given this diagnosis…and thanks to Lauren, I can do this via facebook. Thank goodness for people like Lauren who has the gumption to face this thing, research it and set up a fantastic website! I have met some amazing brave inspirational people though angiosarcoma facebook page!
Gilly Carpenter, Weston super Mare, North Somerset, England. (now aged 52 yrs) forever young though xxxxxxxxx