Receiving a diagnosis of testicular cancer can impact young men in many ways. In a previous article, we discussed the physiology of testicular cancer, and in this article, we hear from men who have been through testicular cancer treatment.
Testicular cancer is uncommon in Australia. Cancer Australia estimates an incidence rate of 1 in 181 (or 0.55%) risk of being diagnosed with testicular cancer by the age of 85.
Canadian research examining mental health usage by men with testicular cancer over a 10-year period, concluded that ‘testicular cancer survivors use mental health services more often than healthy controls’. And furthermore, ‘the difference in mental health service use persisted over a median follow-up of 12 years.’
A narrative study led by researchers from the University of Calgary and the University of Newcastle spoke with survivors of testicular cancer to understand their experiences from diagnosis through to treatment.
Young men’s testicular cancer experiences study.
The stated aim of this study was ‘to understand the experiences of young men with a diagnosis of testicular cancer using a narrative approach, with the intention of informing models of care and support in clinical services.’
A total of 21 young men were recruited to participate in this narrative study, with an average age of 34 years old.
- The average time since diagnosis was 4.1 years.
- 76.2% were Caucasian, South Asian (14.3%), Latino (4.8%) and First Nations (4.8%).
- The majority were married or co-habiting (57.2%).
- 76.2% of these men did not have children.
- 2 men were still on treatment, 7 had completed treatment within the past 2-years, and 12 men were >2-years post treatment.
The men were allocated into small focus groups, and from these group discussions a number of meta themes, sub-themes and shared themes emerged.
For this Real Men’s Health article, we will focus only on the shared themes expressed.
Shared Theme 1: Environments for support
This theme explored the physical, mental, emotional and temporal spaces that the men with testicular cancer could find support.
On some occasions the support from others including health professionals was well accepted, however, in other times the support could have been better before treatment had started (all quotes taken verbatim from the original manuscript),
“The doctor I had was just so, not really insensitive but matter-of-fact, emotionally detached. I guess when you’ve been doing it for so long you kind of remove yourself from human connection because it’s your job. You state the facts and you carry-on but it lost touch with the human element and that I think was a massive slap to the face I wasn’t prepared for”
For the men diagnosed with testicular cancer at a younger age, the available resources and supports were found lacking,
“I went to that cancer seminar with my mom because she’s a doctor and she was helping me through the whole thing and I was the youngest patient by like 40 years… I think resources are good but it kind has to be the right resources because that alienated me instead cause is like nobody here understands what I’m going through. I’m not gonna be able to relate to someone in their 50 s who has a family. It’s like, no. I’m 18. These people don’t know what I’m going through. So that alienated me.”
The opportunity to discuss testicular cancer with someone with lived experience, could have provided empathy and understanding for the journey ahead,
“It would have been nice if I just had somebody to say like, you know, ‘this is what’s going to happen and you know it’s going to take you long time to recover from it but you can get back’ sorta thing and uh yeah that’s kinda…I don’t know like I thought that would’ve been…sorta helpful to know someone who’d been through it before.”
Being provided a safe space for disclosure following treatment was an immense relief, as one man noted,
“It’s almost ironic because ever-ever since I had one of my testicles removed um a year ago um I’ve actually met a woman who um I’ve been fortunate enough to be able to talk to openly about it and um I was—I am very thankful that she’s able to look past that um so that’s been a major coping thing for me to be able to talk to someone about it.”
Shared Theme 2: Conversations about cancer
The young men in this study provided a variety of perspectives about the types of cancer discussions they initiated or experienced following diagnosis.
Due to the known high survival rate of testicular cancer, some observed that health professionals spoke to positive aspects of the diagnosis,
“My outlook was a lot brighter when I was very first diagnosed um and I think that part of that was because when it comes to cancer everybody’s always try to give you the best case scenario and-and some of the other potential things that might happen are kind of brushed over a little bit.”
Some conversations were difficult to receive and process,
“[The surgeon] had the worst bedside manner he’s like, ‘oh by the way we got your CT scan back, it spread, it’s in all your lymph nodes and your abdomen.’ He’s like ‘don’t worry I’ve referred it to the oncologist, he’ll be in touch with you. See you later, I’m past like, I’m off duty’. And I was sitting in the hospital bed like holy fuck.”
One man discussed how his own diagnosis, provided an opportunity to speak with another who had experienced the same,
“There’s a kid that I grew up with, we were a door apart, he had testicular cancer about a dozen years before I did and so the day that I, when I got back from the doctor when I finally got my initial diagnosis, I gave him a call and he kinda counselled me through it.”
Shared Theme 3: Time stress
The ability to manage ‘time’ from diagnosis was highlighted by the men in this study. Some in part related to the rapid transition from diagnosis to surgery,
“I had such a short window of time like I don’t know if I really had a chance to have it sink in and figure out how to cope. Between diagnosis and surgery, I had about a week. So there was the initial shock.”
Following surgery, some experienced waiting time stress- to find out what the next steps in treatment were for them,
“There was probably a four-week gap between when I had my surgery and when I first came here and understanding if I would need radiation or chemo. And that four-week time of sitting there with that uncertainty puts you through hell.”
The completion of cancer treatment, allowed some men to reflect about the time that has past,
“As the years have gone by and I’d start talking about it more I realized there’s more and more things that were unresolved issues but I just did what I could to get past it and I never really circled back to maybe deal with the fallout.”
Young men’s testicular cancer study conclusion.
The researchers concluded their findings of this study of young men with testicular cancer by noting; ‘our recommendations for improved clinical care for these patients include encouraging the expression of concerns with clinicians that may not be just physical, but psychosocial as well.’
Expert Opinion: Joe Bakhmoutski, Testicular cancer survivor
Going through cancer was not at all fun, and I wondered – do other people have questions and worries like I did?
So, I posted a video series that was basically the frequently unasked questions about testicular cancer. And five years on, the biggest number of views and comments and emails that I keep on getting is all about topics that, strangely, still feel like taboo – like, will I be able to have sex after treatment? And is the sex going to change, or feel different? Could I still have kids after cancer?
When you’re a young person who’s still fledgling life has now suddenly taken a turn, these worries become magnified, often unspoken, and swept by the wayside because of the clinical needs and due process.
For me, that’s changed by finding an online community focused on testicular cancer. There, I could ask questions, reflect, and not feel like I was a freak, or alone. That’s armed me with knowledge and thirst to ask questions and figure out the mental side of testicular cancer.
My message is: don’t go it alone, and don’t take things at face value! Nobody knows you the way that you know yourself, so please, ask the questions, connect with the people who know what it’s like – on forums, on socials, wherever you find them, and be your own champion!! Because you deserve it. Rock on!!
A link to Joe’s website can be accessed here.
