THE BLOG

Action on Womb Cancer

01/03/2016 11:57 GMT | Updated 01/03/2017 10:12 GMT

I found out about womb cancer the hard way - I was diagnosed with it in June 2010.

I knew nothing about womb cancer before diagnosis. There had never been an awareness campaign for it in the UK, I didn't know anyone else who'd been through it and I had difficulty finding out anything about it. It felt as though I had a cancer that didn't exist.

I was diagnosed at an early stage because of obvious symptoms - mild spotting that became persistent bleeding. It took time for me to realise - perhaps to admit to myself - that I wasn't going through hormone changes due to my age. At my most ill I was in almost constant pain, had breathing problems, could barely walk and for good measure was diagnosed with anaemia. I slept frequently, for hours at a time.

It turned out I didn't fit the risk criteria for womb cancer and was relatively young for such a diagnosis: it's a cancer that tends to be mainly associated with postmenopausal women in their 60s, whereas I was 50 and hadn't yet gone through the menopause. Doctors told me my case was random and assured me I was young and fit so could beat it. I came away from the hospital that day determined to see my daughter graduate the following year. I made it there and beyond.

Results from a hysteroscopy and biopsies had shown that I had a high grade endometrial tumour. I was scheduled for a hysterectomy and told to expect radiotherapy. Though in the end - and after a complication that had me in resus two weeks after the op due to a blood vessel opening up and me bleeding out - the cancer hadn't spread so surgery was the only treatment I needed. I didn't know whether to laugh or cry.

I now know more about womb cancer than I ever knew I'd need to. I know I'm not alone as the number of annual cases has continued to increase since I was diagnosed. I know that womb cancer is the fourth most common cancer in women and - as far as I'm aware - is now the most common gynaecological cancer. I know there's still no screening programme for womb cancer and that many women - and seemingly also some GPs - don't always understand that a negative pap smear test result doesn't clear them of all gynaecological cancers. Smear tests aren't designed to detect womb cancer.

One of the most important things I now know is that we need to be our own advocates when it comes to our health. That women must keep pushing for answers if abnormal symptoms persist even after a negative smear test result. By abnormal symptoms I mean bleeding after the menopause, bleeding between periods, spotting or discharge.

As a result of womb cancer I've got to know women of all ages who've been through it or are going through it themselves. Some of them are only in their twenties. Some of them didn't make it. That's the saddest part of all.

Debbie Vince is a womb cancer survivor I met online who is now a very good friend offline too. Debbie and I are both involved in setting up a dedicated UK womb cancer charity called Action on Womb Cancer.

Action on Womb Cancer is the brainchild of Dr Nic Orsi, Senior Research Fellow & Pathologist at Leeds University / St James Hospital. It was Dr Orsi's long held idea for his team to collaborate with womb cancer patients in order to set up a womb cancer charity. While Debbie and I were both keen to have a dedicated womb cancer charity, it was some time later before I could finally say yes to teaming up with Dr Orsi to make his vision - and ours - a reality. In between times my father became increasingly ill and, sadly, he died from cancer in October 2014. Dad didn't live to see me get the all clear: this charity is as much for him as for the women it's aimed at. He believed in us and in making womb cancer known about.

I finally received the five year all clear in June last year. It was an immense relief to walk out of the Gynae Oncology Department an officially cancer-free woman. I know I've been extremely lucky and I'm truly thankful for each new day in my post-cancer life.