Hi everyone. This is my first post on here. After visiting my GP with a strange “bruise” on my breast, I was fast-tracked for further tests. Thanks to an incredible Macmillan nurse, I was thoroughly examined, ultrasound , mammogram and a punch biopsy taken of the area, which was now a raised purple-red growth. I owe everything to this skilled nurse who had a high level of suspicion and even at the outset, recognised this to be what eventually was confirmed.
Two months later, in April, after tge biopsy was sent to a specialist centre, I was diagnosed with radiation induced angiosarcoma, a rare and aggressive cancer as a result of the radiotherapy treatment I had in 2019 for breast cancer.
Just over eight weeks ago, I underwent surgery, a radical mastectomy to remove the entire breast and the pectoral muscles behind.. pretty invasive! Incredibly, clear margins of 3cm were managed, but the angiosarcoma was stage 3. . I had been referred to the nearest Sarcoma hub and the treatment I had from the Breast care nurses and surgeons was excellent.
I’m now being monitored by a Sarcoma oncologist at The Bexley Wing, St James’s Hospital, Leeds. I’ve had my first post-surgery chest X-ray ( to check for spread) as part of the “surveillance “ programme and am currently awaiting results. Apparently I will have one every three months for the first two years. But everything takes an absolute age, in the limbo of waiting for results.
It’s all been quite a journey and the prognosis doesn’t appear to be good, and surgeon was clear about high chance of recurrence, often in the same area or in the scar line….but as the oncologist says, live your life, don’t just exist from one x-ray to the next… not so easy to do, but I’m trying not to project into an unknown future and just deal with where I’m at…
Some days I don’t know what to think.. so I just bumble on…
Is there anyone else had the same, or a similar experience?
Hi RedKiteWing
Welcome to our community, hope you find some comfort from joining our special family.
My experience is very different in that my wife has Leiomyosarcoma, hers of gynacological origin though with everything she went through even before a diagnosis things were difficult. For Janice her cancer was incurable at diagnosis but the doctors decided to try chemotherapy. The first was partially successful but caused other problems and so had to be stopped halfway. The doctors managed to cure those issues and then tried a different drug and that seems to have put her cancer to sleep - now she only gets monitored about once a year.
I struggled at times but eventually did a living with less stress course that really helped me. Your point about not just existing from one x-ray to the next and that unknown future really matches what I learnt. It took Janice perhaps a bit longer but eventually we both got to "living with cancer" rather than any alternative. Some days are harder than others - but that is fine.
Waiting for results from scans can be a worry, so common on here we sometimes call it scanxiety but after 10 years for us it has got easier.
<<hugs>>
Steve
Hi Steve, thank you so much for replying to my post and I’m so sorry to hear of what your wife, Janice, and you have been dealing with…my apologies too for my delayed response- I’ve had a few technical glitches with mi iPad and I’m a bit of a technophobe, so it’s often completely discombobulating!
I can only imagine what a long journey you’ve been through- and over 10 years! That’s amazing, especially with the initial diagnosis, it sounds as though you have both found a way of living with what has been thrown at you.
Scanxiety! Very apt.. I’m still waiting for the chest X-ray results ( 3 weeks today- but maybe that’s what it will usually be, who knows.) but in the meantime, I am throwing myself into jobs around the house, and lovely walks onto the moors
I live in a very beautiful area and being out in the landscape feeds my soul. At the moment, I’m fit and well enough to do this, so count myself very fortunate. …
Sendings hugs to you both. 
Jane
