25 April 2021: Everybody agrees that integrated health care is the best way to address illness and enhance wellness. But actual prostate cancer care is divided into narrow splinters of excellence. That’s what I and 99% of the prostate cancer survivors I have met worldwide experienced. It was up to us to stitch together the pockets of excellence provided by specialists. And for most of us there were lots of gaps.

This week I’ve found some sensible suggestions about why integration is so absent from most health care, particularly in areas like prostate cancer treatment and recovery. Here are a few hypotheses.

  • The system prefers neat, clear solutions to tangled interdependence.
  • Anything to do with sex is taboo, or at least too difficult to talk about.
  • There are challenges about proving (or even claiming) professional standing in such areas.
  • Maybe it is all about the money.

Preferring clear-cut solutions

Clinicians tend to focus on solvable problems. So say four smart and experienced professionals, themselves grappling with cancer. They are also educated in matters of health care, human sexuality and occupational therapy. Their views were published last week in a podcast  on Curious Conversations about Sex. I see the benefits of this scalpel-sharp clinical focus on solutions – leading for example to brilliant cancer treatment options such as my own amazing robotic-assisted laparoscopic surgery. “My treatment team focused on my survival, not my living” said one on the podcast. And the bottom line is we do want our clinicians first to secure our survival.

I would add that it is not just clinicians who want certainty – most of their patients also just want them to get the cancer out. People just diagnosed with cancer aren’t always good at listening to the what-ifs and complexities of recovery after treatment.

But then, if we survive the cancer, all the challenges of living with our new bodies and relationships do inevitably emerge. And that is where an integrated ecosystem of health care is needed. My recovery process needed attention to diet, exercise, sexuality, physiotherapy, relationships with loved ones and spiritual adjustment. But none of these were recommended by my clinicians and they couldn’t even refer me when I specifically asked.

I hope the world’s enforced experience of radical uncertainty in the last couple of pandemic years might help us all face up to complexity. It’s time to stop limiting ourselves to problems that can be neatly boxed and solved.

Navigating awkwardness and taboos around sexual matters

On the podcast a healthcare professional said “It is risky for me to ask my clients about sexual matters. There’s often the possibility that they might think I am hitting on them. Or perhaps that I am opening a path for them to hit on me.”

This really got me thinking. Clinicians have to navigate the taboos and awkwardness – and so do we as their clients. Many of us don’t want to talk to a relative stranger about intimate matters. In many cultures the language for such conversations barely exists outside the bedroom.

This is going to take a lot of investment in better conversations (as we are doing in the Recovering Men conversations). There will be no integrated healthcare ecosystems unless people bridge gaps to talk about awkward health matters. This means better communication and relationship skills for clinicians. It also requires support for patients to overcome our reluctance to open up and share responsibility for our own wellness.

What is the appropriate professional standing?

“It’s hard to claim I am well informed about sex” says one of the professionals in the podcast – highlighting just how complex such issues are, and how multifaceted and diverse people’s sexuality and sexual needs and experiences are. I see now how it can be easier to just say “I’m not an expert on that” and stick to your knitting, as a surgeon or oncologist or urologist.

My call to the clinicians is create multidisciplinary teams and bring in the allied professionals to address the areas where you lack professional standing.

Listen to the full podcast! Cancer diagnoses in their 30s – two couples speak frankly about the way cancer ripped up their life plans and threw them to the winds.

There’s lots more than the issues mentioned in this post. They also explore the impact of cancer and its treatment on their relationships, their non-binary sex lives, the ups and downs of libido and new forms of pleasure in new bodies.

One of the health professionals in the podcast is Tess Deveze, the Intimacy Occupational Therapist, host of the hugely successful Intimacy and Cancer Facebook group and author of A Better Normal: Your Guide to Rediscovering Intimacy After Cancer

Perhaps it is just about the money

In a recent conversation with my son in the US, he posed the hypothesis that it is all about the money: surgery and oncology usually attract vastly higher fees than dietitians, physiotherapists, fitness coaches, occupational therapists and psychologists. Somehow the medical insurance system as well as practitioners and their patients/clients all tend to follow the money, setting more store by the expensive treatments and often neglecting the relatively cheaper services that promote wellness.

My experience with prostate cancer and its treatment says that wellness services promoting healthy eating, exercise, sexual and mental health are just as essential as surgery.

I think it is up to all of us – medical and allied professionals and their patients/clients – to value and promote consideration of these in proper integrated health care ecosystems.

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[Editor’s note: just over a year after publication of the podcast mentioned above, I participated in an international podcast miniseries Conversations on Cancer. The series explores a variety of relationships to cancer, death, male and female body and identity, and the role of caregivers. ]

Related post: free coaching offer

To test the theory that “it’s all about the money” I decided early in 2024 to offer some free couples’ coaching – to support prostate cancer survivors and their partners to adapt to the changes. This is not a substitute for medical intervention but a way of filling in some of the human relationship gaps left by a splintered health care system, without putting a strain on the budgets of those who are struggling.