Let’s Talk Lynch- The importance of talking openly and honestly

Shelley blogs about her bowel and womb cancer diagnoses, finding out she has Lynch Syndrome and why she thinks everyone needs to talk openly and honestly about gynae health.

My story doesn’t start with my endometrial cancer, but with colon cancer for which I had a right hemicolectomy in November 2016. Incidentally, just before I was due to see my surgeon for my first follow-up appointment, I was chatting with a palliative care nurse I know and told her my father had had colon cancer and when she asked me what my ethnicity was (Ashkenazi Jewish), she suggested having my genes tested. On asking my colorectal surgeon about this and having worked out that my father had been around 62 at his original diagnosis, he felt there wasn’t any need for testing.

Seven weeks after my right hemicolectomy, we were at my partner’s daughter and son-in-law’s house a couple of days before Christmas when I had a small cough and felt an old familiar feeling of a discharge from my vagina. I went to the loo and saw what looked like dark mucus – similar to what I used to get at the beginning of a period. As I had been post-menopausal for 14 years this was something of a surprise.

The discharge continued, so I managed to get an appointment with a female GP on 30 December and described my symptoms. I told her I wasn’t sure if it was bleeding – it wasn’t bright red blood – but that it had continued for a week and showed no signs of slowing down. I was worried that perhaps something had “shifted” or been otherwise disrupted during my colon cancer surgery (perhaps a little absurd but I couldn’t think what else it might be). She felt the best thing to do was to take a swab and send it away for analysis.

In the new year I was told there was a sign of slight infection and so she prescribed a vaginal antibiotic suppository. After completing the prescription (five days from memory) nothing had changed. I gave it another week or so, hoping the antibiotics would do their thing, before seeing a male GP in the middle of January who prescribed a different antibiotic (this time in tablet form) but also suggested a transvaginal ultrasound, which was done in the first week of February. I was called back to the doctor within a few days and told that there was something there but they needed a closer look, which means a hysteroscopy (a camera goes where the ultrasound scope had been). Being post-menopausal for some time, the gynaecologist just couldn’t get the instrument into me and I was in a great deal of discomfort. There didn’t seem to be a smaller speculum available so she suggested it should be done under general anesthetic. After a lot of hassle trying to book this, it took place on in the first week of March and 11 weeks after my first symptoms, endometrial cancer was diagnosed.

I had my full hysterectomy and oophorectomy on 10 April 2017, three weeks after my 60th birthday.

It was after my endometrial cancer diagnosis I contacted my colorectal surgeon again and asked “so, what about this gene testing then?” he agreed it might be a good idea.

I was diagnosed with Lynch Syndrome in October 2017. Now I am on a schedule of bi-annual colonoscopies to check for any further colon cancer. My gynaecologist is confident that there is nothing at risk in his area of expertise but he is still checking my vagina every six months for any sign of cancer, as this is still a possibility, although remote. There are a few other cancers to which I am susceptible but colon and gynaecological ones are the most prevalent.

Lynch Syndrome is described as “rare”, currently thought to affect 1 in 275 people in the UK although the figure could be considerably higher if more people were tested for it. So, if an immediate relative (parent or sibling) has had one of the cancers associated with Lynch (see the Inherited Risks pages), then they and you should be tested. Many GPs have not heard of Lynch, in fact I’ve had to give a leaflet about it to a GP I saw after my diagnosis.

With no support from the health service for my Lynch diagnosis, it is up to me to pay attention to my body and to react to anything of which I am suspicious. It’s a careful balance between being vigilant and paranoid which informs but doesn’t dominate my day-to-day existence.

I am one of the lucky ones. My cancers were caught early and surgery seems to have sorted them but I know of many others who are not. Be vigilant and get to know your body!