Still from After Testicular Cancer documentary, courtesy of checkemlads.com
When talking about testicular cancer charities most people will invariably think of Lance Armstrong’s LiveStrong or even Cancer Research UK. As a testicular cancer survivor myself I wanted to highlight some of the lesser-known names and charities I’ve come across in the last five years who have made a real difference to people’s lives – through awareness, research, support or raising funds – but haven’t received as much credit as they deserve.
Most of the small testicular cancer charities are run by survivors or volunteers. I’m in awe of anyone who has experienced cancer (survivor or carer) and starts a charity because they are confronting demons they’ve already battled, and that takes real guts and determination. They are also raising awareness at grassroots level, which is undoubtedly saving lives.
But first, someone who doesn’t seem to get mentioned a lot in the UK, even though he is a pioneer in testicular cancer treatment.
Dr Lawrence Einhorn, MD
Cisplatin (chemotherapy drug), has proved very effective in combating testicular cancer and has undoubtedly played a large part in the high survival rate (96%) we are seeing nowadays.
This is great news – as a recent flurry of articles highlighted – however, this doesn’t tell the whole story: one important person’s contribution was largely overlooked.
In the 1970s an American, oncologist Lawrence Einhorn, MD, revolutionised cisplatin’s use in the treatment of testicular cancer, increasing the survival rate dramatically within a short space of time. He combined cisplatin with etoposide and bleomycin to create the BEP regime, which, over 30 years later, is still the standard treatment today. That’s a lot of mens’ lives saved.
Dr Einhorn’s most famous patient has to be Lance Armstrong, Livestrong’s founder, and he prescribed a treatment that enabled Armstrong to continue his cycling career. He also pioneered secondary chemotherapy regimes (also known as salvage chemo) for relapsed patients (such as myself), treatments to lessen the side-effects – the list goes on.
If it were possible to elevate someone to God status then surely Dr Einhorn deserves that honour. Here’s an interview with the great man.
Checkemlads cancer charity
I recently discovered checkemlads, founded by testicular cancer survivor Phil Morris. They are a fantastic charity for anyone who feels confused, lonely, embarrassed, scared or needs emotional support before, during or after treatment. They’ve worked hard at raising awareness and their website contains informative videos, survivor stories and other useful advice including a discussion group on Facebook. They also meet with other survivors for a trek up Snowdon in memory of those who, sadly, didn’t make it.
They are genuinely passionate and it shows – in fact it was the photo of Phil Morris (at the top of this page) that inspired me to write this.
Nick O’Hara Smith
Nick O’Hara Smith and checkemlads.com have been raising awareness about low testosterone, which can affect some survivors of testicular cancer. Symptoms can include depression, mood swings, lethargy, aggression and cause health problems in the future.
Nick’s campaign also raises the issue of life after cancer in general. Obviously, surviving cancer is overwhelmingly, and rightly so, the most important goal, but it’s also clear that quality of life after treatment is important too. Going through cancer is tough; you can’t just finish your treatment, wave the cancer goodbye and walk away. There has to be payback: relationships, work, finance, confidence, well-being, health – can all be adversely affected by the whole experience. As Shine Cancer’s infographic shows, most survivors are left with physical and mental scars.
Nick, checkemlads, Shine, Orchid and a few other survivor stories highlight other problems post-treatment but that’s straying off-topic and for another post.
Shine Cancer Support
Shine Cancer isn’t a specialist testicular cancer charity, but a network for younger adults – 20s, 30s, 40s (typical, I’ve just hit 50) – affected by any cancer. I’ve included them because, like checkemlads, they’re a great charity offering support, friendship, advice and information. Founded by Emma Willis, she also runs the small c project, which as their website states: ‘…aims to identify and explore the gaps in support and information…allow us to start the search for solutions’.
Orchid cancer charity
I have to give a special mention to Orchid Cancer, set up by testicular cancer survivor Colin Osborne, as they supplied the funding for research into my treatment and I’ll always be grateful for their support.
They specialise in male-specific cancers – prostate, testicular and penile – offering support, information and advice as well as investing in research (I was part of their research trial). They have two dedicated male cancer information nurses (Katherine was one of my liaison nurses at St Barts) who can answer questions via email.
If your testicular cancer has relapsed and you need advice, Orchid is a good start for information.
Dr Jonathan Shamash
Dr Shamash is a specialist consultant in relapsed testicular cancer at St Barts, London (in conjunction with Orchid) and was my consultant. What can I say? I thought I was broken beyond repair but he fixed me.
Other testicular cancer charities
I’ve listed some more testicular cancer charities below – apologies to any I’ve missed.
- The Mark Gorry Foundation: Sadly, Mark didn’t make it but his legacy lives on with his testicular cancer foundation. Based around Cheshire.
- Balls To Cancer: Raising funds for awareness, education and research. They also plan to open a contact point for men worried by cancer.
- Ballboys: Founded by Keith Binley & Darren Schindler. Raising awareness of testicular cancer through sport and humour.
- Talking Testicles: Set up by survivor Ryan Walshe. Aimed at giving 15–24 year-olds educational talks in a fun and interactive way.
- Wendy Gough Cancer Awareness Foundation: Offers phone support and raises awareness about the early signs and symptoms of cancer.
- The Robin Cancer Trust: Raising awareness of germ cell cancer in 16–35 year olds. Set up in memory of Robin Freeman. Based not far from me in North Essex.
- Howay The Nads isn’t a charity but a group that raises awareness and offers support. Based around Newcastle and the North East.
Important foot notes
The rules are the same for easily curable cancers as they are for any type of cancer: The earlier you get treatment, the better your chances. Even if the cure rate reached the magic 100% it would still be absolutely essential to check yourself regularly and if anything unusual is found, see your GP.
Although testicular cancer predominantly affects younger men, it can still strike at any age. I was 44 years old when diagnosed and there was also a 54-year-old gentleman on the same ward a few months earlier.
Thanks to Phil Morris at Checkemlads.com for inspiring me to write this piece. It’s taken me five years to come out of my shell but I’m getting there.