Being diagnosed with terminal cancer is about as difficult as it gets.

But when it’s a form of cancer that’s so rare there’s barely any information on it, things get even tougher.

Sue Clarke, 57, was initially told her vulval cancer – cancer of the external genitals – was survivable.

But a few months later, the Brockholes grandma was told she had just 12 months to live.

Comparatively little is known about vulval cancer because of its rareness; in the US it accounts for six in every 1,000 cancer diagnoses and just 1,200 diagnoses in the UK each year.

And the lack of information on its treatment and prognosis has made it all the more upsetting for Sue’s husband Stanley and her three children.

That’s why daughter Amanda Vickerman has formed a team of approximately 20 friends and relatives to run the Huddersfield Race for Life in July.

Except it’s not just about raising money for Cancer Research UK.

Amanda, 36, said: “Unfortunately there’s not much research on it because it’s so rare.

“Ultimately, we want to find a way of treating it.

“I don’t want a family to go through what we’ve gone through.”

Because research on vulval cancer is limited Sue, a former security guard, has had varying diagnoses and is never sure whether radiotherapy, chemotherapy and other treatments will work.

READ MORE: Huddersfield Race for Life 2015: Leeds Road Playing Fields becomes sea of pink at Cancer Research fun run

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Amanda said: “It is more difficult to deal with. They’ll try chemo, but we don’t know how successful it will be.”

The team called Sue’s Dashing Divas will be tearing around Leeds Road Playing Fields, on July 10, alongside thousands of other women and children.

You can sponsor the Dashing Divas – and their three little dudes – at www.justgiving.com/amandavickerman .

Amanda added: “I feel I have to try everything while I’ve still got my mum.

“We’re not giving up – we’ve been told there are people who have survived.

“We want to keep fighting to see if there’s anything out there or anyone who can help us.”

Amanda Vickerman (centre) and friends, from left; Mags Horsfield, Annabel Rich, Kath Madden, Ria Kaye, Kelly Rogers and Lyndsay Savage, in training for the race for life on the roads around Brockholes.
Amanda Vickerman (centre) and friends, from left; Mags Horsfield, Annabel Rich, Kath Madden, Ria Kaye, Kelly Rogers and Lyndsay Savage, in training for the race for life on the roads around Brockholes.

The exact cause of vulval cancer is unclear, but risk increases with age, smoking and certain skin conditions.

Symptoms include persistent itching, soreness and bleeding outside periods.

For more information visit: www.nhs.uk/Conditions/cancer-of-the-vulva.