When I was diagnosed with an uncommon and aggressive womb cancer in 2014 my surgeon described it as "ovarian cancer in the wrong place". He was right and now, as I grapple with the complexities of this cancer recurring, I am asking whether it is time to stop naming cancers by their site and start to think in a new way.
Let me explain. I was 50 when I was diagnosed with a high-grade uterine serous carcinoma - an uncommon form of womb cancer. At a molecular level it is much more like an ovarian cancer - except that it originated in my uterus. When it comes to treatment and access to clinical trials and new treatments that makes all the difference.
Back in 2014, my first line of treatment was surgery, chemotherapy and radiotherapy. If I'd been diagnosed with a high-grade ovarian serous carcinoma (OSC) I could have been spared the radiotherapy because research shows it is ineffective for these women. Six and a half weeks of pelvic radiotherapy is not a picnic and has long-term consequences.
Treatment over and I wanted to know whether I carried a genetic fault, given my mother's history of cancer, and to find out if there was a risk to my children and siblings. If I'd had ovarian cancer I would automatically have qualified for a genetic test to look for a genetic fault known as a BRCA mutation that carries a high risk of breast and ovarian cancer. As a woman with womb cancer, I was not officially eligible.
I was lucky enough to see a clinical geneticist with a particular interest in uterine serous carcinoma who agreed to genetic screening. I tested positive for a BRCA1 mutation that was the likely cause of my cancer. The consequences of this are far reaching for my family, for other women with USC and for me.
First, my family. Each of my three sisters and both my daughters has a one in two chance of carrying the same genetic fault. One sister is positive so now faces preventive surgery. Her own daughters, in their 20s, are going through testing as I write. My own teenage daughters are too young but will need to make their own decisions in time.
The impact for other women with this rare form of womb cancer is also potentially huge. It seems unlikely that I am the only woman with uterine serous carcinoma and a BRCA mutation. How many of the 900 or so women a year diagnosed with uterine serous carcinoma are also BRCA carriers?
I know some women diagnosed with uterine serous carcinoma who have breast cancer in their families and yet are being turned down for genetic testing because, their doctors tell them, womb cancer is a not risk for BRCA mutation. Part of me realises that I am a lay-person and not in a position to argue the point. Another part of me wants to say: "Come over here and say that to my genes".
And then there is me. The cancer I was diagnosed with is aggressive and the prognosis is poor. In my case, the initial treatment kept the cancer at bay for nine months but in autumn 2015 it recurred. It's now on the march through my lymph system.
There is very little research into womb cancer - despite the rate increasing by 10% a year. By comparison there's a lot of research into new treatments for BRCA-related ovarian and breast cancers.
If my diagnosis had been ovarian cancer, I would be eligible to join clinical trials of these new treatments. Longer term, I could be eligible for a drug on the NHS that could help me live longer - and with a better quality of life. As things stand, the "womb cancer" label excludes me. I am working with a leading oncologist to try to find a way around this barrier. It's not easy.
In a world where science and research is taking us down the road of highly specific treatments that interact with specific molecules in specific cancer cells, it no longer makes sense to classify cancers by their site of origin. We need a new system that classifies cancers by their type - and the treatments that are likely to work.
I used to think this was an esoteric and academic argument for scientists. Today, I am one of a number of patients for whom this is real and urgent. It's time for scientists, doctors, cancer patients and NHS England to work out a way forward that enables women like me, with an atypical or rare diagnosis, access to latest treatments and genetic tests.
For more information about womb cancer or gynaecological cancers please contact women's health charity, The Eve Appeal or getting in touch with their specialist gynaecological cancer information service Ask Eve via email email@example.comSuggest a correction