During the Pandemic, I was diagnosed with a very rare and aggressive type of soft tissue cancer called angiosarcoma which was most likely caused by my previous radiotherapy.
I decided to join the community as I believe much more can be done to ensure that research is done into rare cancers. I don’t like the thought that, because my cancer is rare, there isn’t sufficient investigation going into effective treatment or prevention.
I was originally diagnosed with breast cancer in 2015. I was treated with radiotherapy to the breast and armpit and was put onto Tamoxifen for up to 10 years to help reduce the risk of recurrence. In about 2018/19, I noticed a small mark and reported it at a routine annual check. The breast care nurse said it looked fine but that she’d book me in for an ultrasound if that reassured me. I had the ultrasound and was told that all was OK.
By 2020, the bruising on my breast had got significantly worse and I made an appointment with my GP and because of Covid, this was a phone appointment and she referred me back to the breast care team. The appointment took several weeks to come through. I attended alone because of Covid and all the staff were masked up and kept as far away from me as they could. The consultant reluctantly did a biopsy (as she was trying to maintain social distance) and then stitched me up. I was left with the impression that the biopsy was precautionary.
A few days later, I received a phone call from a different breast care consultant to report on the results of the biopsy. He started by apologising that this was being done over the phone rather than face to face. He said that, unfortunately, they had found that I had angiosarcoma, most likely caused by the radiotherapy. This was a very rare and aggressive type of soft tissue cancer. Unfortunately, angiosarcoma doesn’t show on ultrasound scans – hence missing earlier signs of a rare cancer.
I asked about treatment, and he said that surgery (mastectomy) was the most likely route and that I would be referred on to a specialist sarcoma service and that they would be having a Multidisciplinary Team Meeting to plan my treatment.
I was in total shock. I had never heard of angiosarcoma and a quick Google made for very scary reading. About an hour after the phone call, a breast care nurse rang me. She said that she had been present when the consultant phoned and she was now following up to check what I understood and to see how I was. Again, she was very apologetic that this was being done over the phone due to Covid.
I was told that the only treatment was surgery and so a mastectomy was scheduled. I was warned that, even if they got clear margins, angiosarcoma tends to skip over margins and that there was a high risk of spread to the other breast or to the lungs.
Because of Covid, all my face to face consultations were alone. I had to go to hospital on my own, with no visitors. This made it very difficult to take in lots and lots of complicated information and so I’m glad that I took every opportunity to write everything down from the outset.
During all of the pre-op scans, it emerged that the Tamoxifen had also caused unwanted side effects so I was also referred to a gynaecologist and have had to start a whole raft of other treatments. Whilst having surgery, the sarcoma specialists performed a mastectomy closely followed by the Gynae team who operated on the other end! Because of the risk of recurrence I now have 3 monthly scans and consultant appointments. So far, all has been well.
Having a rare cancer, particularly during the Covid Pandemic, is a lot to take in. Information on my particular type of sarcoma is sparse and the statistics are a bit alarming.
Fortunately, I generally don’t spend time worrying about things I can’t control so I’m shamelessly making sure I spend lots of time enjoying my huge list of hobbies and interests.
I worked in a senior IT manager role, with a huge amount of pressure and responsibility. Through discussion with my GP and several professionals, I concluded that I didn’t have enough headspace for myself AND a high pressure job.
The brain fog and pain from the various drugs (ironically, for the breast cancer and not the sarcoma), the prognosis and the large number of medical appointments (I’m a regular visitor to 5 different hospitals plus my GP!) made me eligible for ill health retirement.
Having taken retirement, I haven’t looked back. I’m really enjoying myself and don’t have any time to waste worrying about my underlying conditions. Every cloud…
I saw an advert for RareCan on Facebook. I hadn’t heard of it before, but thought it looked interesting as there’s a huge void to fill in the UK.
It would be nice if RareCan is able to offer support to its members,it is great they are able to promote awareness of my experience as well as help increase research opportunities. Communities of RareCan members would be helpful too.