My hysterectomy and cancer journey – Anya’s story

I had been suffering from heavy bleeding on and off since the birth of my second child in 2012 , medication and the contraceptive pill did nothing to ease the bleeding and I was referred to a gynaecologist, I initially saw a locum gynaecologist who persuaded me to have a Mirena coil fitted.

However that made matters matters worse and some six months later following several appointments with another gynaecologist, a hysteroscopy and scans it was discovered that coil had managed to lodge itself in my uterus and that the small fibroid I had had for years had suddenly enlarged in size. My gynaecologist recommended I had a hysterectomy- I was 37 years old at the time with 2 young children and had not been fully sure that I wanted such drastic surgery that would so suddenly bring my child bearing days to an end and there was all the worries as to how I was going to mange the children after having such major surgery. Anyway, I had the surgery and as things turned out thank goodness I did.

The surgery went well, I recovered quickly and was back swimming and being quite active within a month of surgery. I felt better then I had for weeks. Then the bombshell came, 5 weeks after surgery I was contacted by my gynaecologist asking me to go back and see her in 3 days time. Unfortunately due to a hospital error the letter telling me I needed a ct scan landed on my doorstep before I had seen the consultant.

It was my 38th birthday and I found myself at the hospital being told by the gynaecologist that the histology results post surgery had found a rare gynaecological cancer called uterine leiomyosarcoma. I spent the next 6 weeks in and out of hospital appointments, CT scans , meeting with specialist doctors to ascertain if the cancer had spread-thankfully it had not and how to treat me to prevent recurrence.

My life was turned on its head, as the anxiety about would I survive, what would happen to my family, could I get over this kicked in. The prognosis was and remains unclear given the rarity of the cancer, the doctors are cautiously optimistic about the future but leiomyosarcoma is an aggressive cancer with a high risk of recurrence. It is now 18 months since I had the hysterectomy and I remain well at present, I am getting used to the 3 monthly check ups at hospital and the twice yearly CT scans. It has been and continues to be a difficult journey but each day I am so grateful that I had the hysterectomy as had I not the cancer would have been able to spread and I may not have known it was there until it was too late.