10/11/2016 12:53 GMT | Updated 11/11/2017 05:12 GMT

This Is What Life With Rare Cancer Looks Like

"It may be rare, but it is just as fatal." These words by Dr Steve Nicholson really struck me. He was talking about penis cancer, a disease that many people have never even contemplated. But he could just have easily been talking about any one of hundreds of cancers that we don't talk about very often, such as cancer of the penis or anus. And that is why in episode 6 of Stand Up To Cancer: The Podcast, we focus on lesser known cancers, and how beating them is just as important as beating the ones we hear about all the time.

We also meet Neil, who shares his experience of living with Penile cancer. Listen to his story now.

In this list of the top twenty causes of cancer death on Cancer Research UK's stats pages , the first four causes of cancer death are lung, bowel, breast and prostate cancer. But if you glance down to the bottom of the list, past brain cancer, pancreatic cancer and leukaemia, there is a category called 'all other sites'. Despite being placed at the bottom of the table, this category is actually the fifth most common cause of cancer death. Rare cancers take a lot of lives.

The trouble with treating rare cancers is in the name. They are rare. Scientists need to be able to study the cancer to find out how to beat it. And then they need to test new treatments on enough people to find out if it works. If a cancer that has just a few hundred cases a year, this makes it rather difficult to tackle.

Which is why Steve's work is so exciting. He is leading a clinical trial that is using some very clever statistical methods to nullify this problem. It will let him find the most effective way of treating cancer of the penis. It may surprise you that in 2016 we still don't know how best to treat penis cancer - that has to change. Meeting Neil, and hearing about his life-altering experience highlights that very urgent need.

At first glance, Steve's trial may not instantly grab people's attention. It doesn't involve flashy new drugs or revolutionary technology. But it could define how we treat penis cancer for an entire generation. It even has the potential to open the door for improving treatment for other rare cancers. And that should make people sit up and take note.

Also in this episode we meet another person who is working to beat a rare cancer, Professor David Sebag Montefiore. Keeping to the taboo theme of this episode, David, specialises in another rarely discussed cancer, cancer of the anus, which affects about 1000 people a year in the UK. This cancer can be detected at varying stages and David is trying to find out whether different severities of this cancer should be met with different levels of treatments.

The treatment he introduces us to is pretty flashy. His trial uses state-of-the-art radiotherapy machines which actually shape the beam of radiotherapy so that it wraps around the tumour, minimising the damage to healthy cells nearby. By tailoring the doses and frequency of treatment to the needs of individual patients, David is taking a step towards personalising treatment, something I believe is the future of cancer therapy.

Trials like these are essential. We can't just focus on the most common cancers, we need treatments that work for everyone. And that is why Stand Up To Cancer supports this sort of work. No cancer should be left behind. Join the rebellion

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