I found out about womb cancer the hard way.

A guest blog for JustGiving by Debra Parry

Five and a half years ago, I was diagnosed with it.

Before the diagnosis I had never heard of womb cancer. In the UK, there has never been any awareness campaign for it. I didn't know anyone else who’d been through it and I had real difficulty finding relevant information about it. It felt as if I had a cancer that didn't exist.

I was diagnosed at an early stage after showing signs of abnormal bleeding. But I didn't fit the risk criteria because I was relatively young for such a diagnosis: it’s a cancer that tends to be associated with post-menopausal women in their 60s, whereas I was 50. Doctors assured me that I was young and fit enough to beat the cancer. I came away from hospital that day determined to see my daughter graduate the following year.

Since that day, I now know more about womb cancer than I ever thought I’d have to.

Here are four important things I’ve learnt about womb cancer:

1. The number of cases in the UK is rising. Unfortunately, the number of annual cases has continued to increase since 2010 and womb cancer is now the fourth most common cancer for women and the most common gynaecological cancer.
2. Diagnosis can be difficult. 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 smear test result doesn’t clear them of all gynaecological cancers. Smear tests aren’t designed to detect womb cancer.
3. We need to increase awareness. 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.
4. I am not alone. Since my diagnosis, I’ve gotten to know women of all ages, who’ve been through it or are going through it themselves. By speaking to them and sharing our stories, we have created a community that has help me and others beat cancer. Debbie Vince is one of the womb cancer survivors I met online (and is now a very good friend offline too). Debbie and I are both involved in setting up the UK’s first dedicated national womb cancer charity — Action on Womb Cancer.

The charity

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.

The path has not been easy. Along the way, 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 it is for the women its aimed at. He believed in us and in making womb cancer know about.

Crowdfunding

Action on Womb Cancer is very important to all of us involved in bringing it forward, and crowdfunding through JustGiving has been a hugely important step towards helping us make it a successful reality. We’re extremely grateful to JustGiving for making our crowdfunding campaign possible, as well as to all family, friends and total strangers for their donations to the crowdfunding page, along with their messages of support.

Poignantly, our charity’s crowdfunding page has become a tribute to the friend we lost to a recurrence of womb cancer midway through our fundraising. Through their generous donations, her family and friends are keeping her with us and spurring us on in her memory every step of the way.

Unltd #BigSocial2016

On the 25th February 2016, I was given the opportunity to talk about our Crowdfunding campaign at #BigSocial2016 in a workshop run by Louka Travlos of JustGiving. This was a great opportunity to spread the word about Action on Womb Cancer and to encourage others to start up crowdfunding campaigns for their own good causes. If you get the chance to attend Big Social next year, my advice is to go and enjoy the experience!

In June 2015, I was finally given the five-year all clear and am officially a cancer-free woman. I know how lucky I’ve been and I’m looking forward to helping other women via our charity thanks to the success of our crowdfunding campaign.