Trust Me to have a Rare Cancer!

When all this started, about six weeks ago, I was totally certain that I was going to be told that I had a bog-standard breast cancer (adenocarcinoma to the initiated) which is what my mother, my aunt, my paternal grandmother and my cousin all had (and, no, I do not carry the cancer gene). When I went up for the initial biopsy results, they told me that I certainly did not have that, but they could not be sure exactly what it was or which cells it started from. To be honest, that was the closest I came throughout this saga to totally falling apart.

Surgery came and went. I was feeling much better and put thoughts of histology away for two weeks. As the results day approached, I must admit that I got a little tense, but my brother came up to be with me and that helped enormously. It turned out, when I got the results on Tuesday, that I have a very odd (and rare) kind of cancer that is made up of lots of different kinds of cells. Kindly, they photocopied the pathology report for me so that I could bring it home and study it.

Several hours of Google searching later, I realised that it was VERY rare. I could find no proper trials, just a few small case series. Nobody seems to know much about it. There were no estimates of how things were likely to go. This was strange. I had not expected this at all. To be honest, I didn't even know that these tumours existed in the breast.

So, today I met the oncologist for the first time, yet another kind, caring doctor, who let me ask all my many questions and never hinted that I was eating into her brief time for lunch. And it certainly is rare: less than 1% of all breast cancers! 'Trust me', I thought, 'I can't do anything the normal way'. Of course, this has interesting implications, not least that nobody really knows the best way to treat it. So, we shall try everything: chemotherapy next, then radiotherapy. Fortunately for me, the nodes and margins were clear, so no further surgery is needed. I did ask if there were any experts anywhere in the world: the doctor said she would investigate. I did say that if she could find me one in Rome, I would be happy for the NHS to fund my treatment there. She laughed.

I must remember to tell her that if she writes me up, I want my name on the paper - at least I can achieve that one of my work objectives for the year!