Why we need to continue to support research and support for men with testicular cancer.
Testicular Cancer is a relatively rare disease.
In most of the western world, this cancer accounts for around 1% of cancer diagnoses in men, however it remains the most common cancer in boys and men aged 15 – 40 (except for Australia, where the incidence of testicular cancer in this age group is second only to skin cancers). Treated early, the survival rate is exceptional compared to other cancers – better than 95% for much of the world and approaching 98% or better if detected early. In fact, the chemotherapy agents that oncologists use these days are so effective, that even in later stage and intermediate risk disease the survival rate is still well over 90%. However, incidence is on the increase – the disease is twice as prevalent now as it was 50 years ago. Here in Australia, more than 750 men are expected to be diagnosed with a testicular cancer in 2016. That’s around 2 men every day.
In many circles, testicular cancer is referred to as a great success story in modern day oncology.
This is certainly true when you look at just the statistics, and certainly no one would argue that a scenario where the vast majority of patients treated for the disease survive, but this only paints part of the picture. Effectively and completely removing cancer from a patient’s body does prevent them from dying of the disease, however the ramifications of this treatment can be significant and can also be long lasting. There is evidence that men who are treated for testicular cancer suffer long-term physical and psychological distress as a result of the chemotherapeutic agents that oncologists use to kill the cancer cells.
One of the biggest problems in determining just how big this issue is, is that the methods we use to measure psychological distress were developed to measure either other cancers, or worse, developed and validated specifically for women (most commonly those with breast cancer). Many of the aspects that these tools measure are simply not relevant to testicular cancer patients, or the aspects of the disease that are the most concerning for men travelling the cancer journey aren’t measured at all.
Testicular cancer is also unique in that for a disease which has great survival statistics, there is often very little time for men to effectively digest and understand their treatment options before these treatments commence. Anecdotally, we hear time and time again that the period between sitting in a Urologist’s office and being told you have cancer to being in the operating room having a testicle removed is measured in hours, not days. In my mind, when time is limited it is critical to have access to sensible, relevant and evidence-based advice for these men. Unfortunately, your good friend Google in situations like this is not at all helpful and can very quickly send you down a rabbit hole of opinion, hearsay and misinformation.
Although I confess to not having a personal testicular cancer experience, I’m immensely proud of the work that my colleagues have been doing at the Movember Foundation to support the men and boys across the world who are living with and beyond testicular cancer.
The Foundation has identified four key areas to help these men live happier, healthier and longer lives.
Firstly, testicular cancer is a relatively poorly understood cancer. It is our shared view that while we know how to treat the disease efficiently, there is currently no simple or accurate way to determine who will be cured of the disease and who won’t. To ultimately beat this disease, we need to better understand the biology of testicular cancer and in particular understand the mechanism of relapse.
Secondly, we need to better support men through the long-term physical side effects of treatment. Men who have had chemotherapy and/or radiotherapy are at a higher risk of further cancers, a higher risk of heart disease and other neurologic, kidney and fertility disturbances later in life. Many of these risks can be minimized with good medical management, but we think there needs to be a concerted effort to better understand these long term risks and the ways that they can be mitigated.
Thirdly, evidence is emerging that there is a unique set of long term psychological impacts on being labelled as a testicular cancer survivor. With long term survival comes long term living with the impact of the cancer – men with testicular cancer face long term effects such as fear of recurrence (the cancer coming back), questions about fertility and masculinity as well as struggles with ordinary life tasks such as being able to find employment, health insurance, partners etc. Given the disease strikes men most often between the age of 15 and 40, men who are treated for this disease are often already on a journey of self-discovery, they often haven’t yet met a life partner or even contemplated having children. I can only sympathize with these men (and boys!), when cancer places these decisions squarely in their frame of reference and with a great deal of urgency.
The final piece of the Movember Foundation four pronged attack on testicular cancer relates to the critical period around the time of diagnosis. Around 2/3rds of men who face a diagnosis of testicular cancer will face significant psychological challenges at this critical time of their lives. My colleagues and I have a strong view that this is a time period where these men absolutely must be adequately supported and informed.
This April, the Movember Foundation is getting behind Testicular Cancer Awareness Month.
Our ambition is to make men and boys more aware of the disease and to “Know thy Nuts”. It is important in our view, that all men – from their teenage years onwards — get to know what feels normal and seek the advice of a trusted doctor if something doesn’t feel right in either of your testes. It is our belief that ultimately beating this cancer relies on early detection. If caught early, the disease is ultimately treatable and the notion of a world where no man need die of testicular cancer is inching ever closer. It is equally important that men find a doctor that they trust and talk to them about all of their medical worries – both mental and physical.
This April, you too can show your support for the Movember Foundation’s Testicular Cancer Awareness campaign. Head to movember.com and follow the links to the testicular cancer awareness pages to learn more about testicular cancer, including how to perform a self-examination, where to get good advice, what to look out for in terms of signs and symptoms and where to go to purchase our limited edition testicular cancer awareness soap-on-a-rope or boxer short and sock combination packs. Then, boys, when you are next in the shower, acquaint yourself with what feels normal downstairs. You never know – it might just save your life.
Project Manager, Testicular Cancer Initiatives
The Movember Foundation
Photo courtesy of the author.