How TrueNTH is helping couples enjoy sex after Prostate Cancer

Author: James Brandis & Serpil Senelmis

Treatment for localised Prostate Cancer can have several side effects including, for many men, the inability to get an erection. Health services have traditionally just focussed on survival, but new programs are enabling men and their partners to maintain intimate, physical relations.

When Dean Janes was diagnosed with prostate cancer at the age of 47 he was shocked, but not panicking. The drywall installing crane driver didn’t think he was going to die and his partner was confident that they had really good care. But there was a particular aspect of the treatment that was causing them concern.

We didn't know if we were ever going to be able to do it again. We were so young that we were freaking out. We were very stressed before the surgery,” Dean’s partner explains.

With winter coming on, the couple fled their home in Oshawa, Canada and headed south to the warmth of Mexico for some rest and relaxation.

This is something I might recommend to other couples going into cancer surgery. We did spend a lot of our free time making love, because we didn't know when the next time was that we were going to be able to do that,” Dean’s partner confides.

So, we just made love, love, love, love,” Dean clarifies.

The other thing Dean and his partner did before treatment was to sign up for TrueNTH’s SHAREeClinic. TrueNTH is a global network of programs that enable men diagnosed with prostate cancer to improve their quality of life – it’s funded by the Movember Foundation.

As part of TrueNTH, SHAReClinic is the Sexual Health and Rehabilitation e-Clinic offering personalised support for sexual dysfunction after prostate cancer treatment.

It’s headed up by Dr Andrew Matthew, a Senior Psychologist at the Princess Margaret Cancer Centre in Toronto, Canada. He says when it comes to prostate cancer treatment, “by far and away the single greatest impact is specific to sexual dysfunction.”

We know that about 80% of patients will experience long term sexual dysfunction. The majority of those will describe the experience not only of lacking function but also affecting them emotionally.

Men have told Dr Matthew that they feel that it's their problem because they've lost their erectile functioning and they feel guilty that they've let down their partner. It also goes to the core sense of their masculinity – that being sexually viable is part of being a man.

As well sometimes the partners would take on the belief that maybe they weren't attractive enough, or they weren't doing something right and that's why he wasn't recovering as well. So, you can see that there's a real chance for miscommunication,” Dr Matthew warns.

Treatment for localised prostate cancer is increasingly successful, with the 10 plus year survival rate approaching 95%. Until recently the majority of the focus has been on treating the cancer, rather than focusing on the patient as a whole. Dr Matthew explains that we’re now seeing a shift in prostate cancer treatment – while the focus is still on curing the cancer, now there’s more attention given to survivorship and quality of life.

However, the availability of treatment programs for the management of sexual dysfunction after prostate cancer treatment is the exception rather than the norm. When TrueNTH set about filling the gap in these programs, they chose not to simply focus on major treatment centres.

We wanted to develop programming that had access and reach so that people who live outside of major urban centres have similar access to care that they do in the major centres”.

As an online resource, SHAREeClinic has both digital and human resources. On the digital side there’s a variety of videos and information online that are customised to the patient. So, the experience is different for radiation or surgical patients, singled or coupled and gay or straight men.

We teach the couple to put sexual intercourse on the backburner for a while and try to have them continue to maintain sexual activity at a routine not unlike they had prior to treatment, but just not penetrative in form,” Dr Matthew says.

On the human side, the patient is assigned a sexual health nurse who reaches out to the man by phone and is then available at any time for a secure chat on a mobile phone app. That person is trained in sexual health specific to prostate cancer. Dean describes his nurse as a personal cheerleader.

It's nice to talk to somebody who knows. I thought that I was not doing well – I was complaining, and she told me that I was better than most of the guys out there. She was praising me and saying, 'that's good, that's really good, you're doing great'. She made me feel better, not so discouraged, knowing that it was going to get better.

The men are able to invite their partners into the program where they can have their own access to the digital resources, and their own private conversations with the sexual health nurse. Dean’s partner was by his side at all of his medical appointments and they chose to be together when they spoke to their nurse, Monique, as well.

From the partners perspective I like that I have someone to talk to as well. Dean is the one going through the surgery and he's the one with the symptoms. But there are residual symptoms with the partner as well and it's nice that I have someone to check in with,” adds Dean’s partner.

While SHAReClinic is currently operating out of six major institutions across Canada, it’s still being tested as a pilot program. It’s being compared with a long running face-to-face clinic at the Princess Margaret Cancer Centre in Toronto.

If we can get similar outcomes to a face-to-face clinic that would be fantastic because of the reach and accessibility, approachability and sustainability. And if it's better, then away we go,” Dr Matthew declares.

Sexual dysfunction programs in the USA and the UK

A similar pilot program is underway in the USA using a completely web-based system that’s aimed at couples as well as single men. Like SHAReClinic, the TrueNTH Sexual Recovery program is customised to the patient to provide relevant and practical information.

The aim is to broaden out the idea of what sex is and how that can be satisfying regardless of sexual dysfunction that comes as a result of treatment.

Dr Daniela Wittmann is Associate Professor of Urology at the University of Michigan and overseeing the TrueNTH Sexual Recovery program. While this intervention doesn’t provide a sexual health nurse, it does encourage participants to talk to health professionals.

It has a section that supports men and partners in talking to their health care providers about their sexual concerns, because that is a very big problem in healthcare. People just don't talk about it and patients don't know how to ask.

The TrueNTH Sexual Recovery program is in place in five major institutions across the United States and recently jumped the Atlantic to the United Kingdom.

Our first experiment with cultural differences is the UK adaptation. They ran some focus groups and sort of, re- wrote it. They will be trying it out this year with men with prostate cancer.

The question hanging over all of these pilot programs is ¬– how do you measure success? In the past the answer has been to measure the improvement in sexual function. Dr Wittmann says it’s no surprise that most interventions are not capable of achieving that.

If you look at the trajectory of erectile function for men treated for prostate cancer, the ultimate trajectory is decline over time. So instead of sexual function we chose satisfaction with sex life because it's a much broader concept and it does not insist on men having their natural erections back.

In addition to supporting men and their partners directly, the TrueNTH Sexual Recovery program is a valuable resource for clinicians, oncologists and others who treat prostate cancer.

If we are successful, this is going to provide relief to a large proportion of men and it will also provide something for health care providers to offer to men, which typically they are unable to provide,” Ms Wittmann says.

Success for Dean and his partner

Dean’s treatment for prostate cancer was a complete success and he’s been declared cancer free. After three months off work, he’s about to head back to the building site.

Dean’s partner says their love-life has changed and is a bit less spontaneous, but that’s not a bad thing.

I'm up for the challenge. I'm actually excited to see all the changes that have happened with Dean so far. It's three months after surgery and we've been able to make love and that's been wonderful. But it's not like it was before. So now we're just trying to figure out what our new normal is.

For his part, with his partner by his side and SHAReClinic in his corner, Dean isn’t stressed at all.

While they haven't told us any new moves, they encourage lots of homework which I'm up for. Well semi up for.