THE SECRET TOLL OF PROSTATE CANCER

After my surgery, there was a time my wife was `frightened for her life'

When business consultant Elvin Box was diagnosed with aggressive prostate cancer in 2016, and was told he needed urgent treatment, his first question was: “Will I die?” His second was: “Will I be able to get an erection again?”

For Elvin, now 65, and his wife Judith, also 65, from Laindon, Essex, in England — childhood sweethearts who met at 16, and now have two daughters and six grandchildren — sex was an important part of their 41-year marriage. He admits his first instinct was to ignore facts.

Loss of sexual function following prostate cancer treatment is, for most men, far more than just an unpleasant side-effect; it's life-changing. Recently the impact of sexual dysfunction was recognized, with new guidelines for prostate cancer care published in The Journal of Sexual Medicine.

The guidelines are based on 25 years of research and combine perspectives from 37 international clinicians and researchers, as well as prostate cancer survivors and their partners. They acknowledge sexual dysfunction as the most reported quality-of-life outcome and the greatest unmet need in prostate cancer care.

They also encourage health-care professionals to provide tailored care to enhance the sexual health of every patient, and to facilitate decision-making between clinicians, patients and their partners.

One in eight men in the U.K. will be diagnosed with prostate cancer in their lifetime, with approximately 1.4 million men diagnosed globally in 2020. In England, 86 per cent of these men will be alive five years after diagnosis, and between 25 and 80 per cent of them will have some form of erectile dysfunction.

It's not the cancer that affects sexual performance, but the treatments. “While different treatments (surgery, radiation, hormonal therapy) have somewhat different effects, all cause erectile dysfunction, loss of or diminution of ejaculation,” explains Daniela Wittmann, associate professor of urology at the University of Michigan, and a certified sex therapist.

“Men on hormonal therapy lose their sex drive because of the loss of testosterone, and have diminished erectile function, diminished ejaculation and possible loss of orgasm. Surgery can damage nerves that are responsible for erections, and erectile dysfunction (ED) occurs immediately after surgery.

“Even when surgeons attempt to save those nerves, they take a long time to recover (two-plus years) and it's likely they will not recover fully. With the loss of the prostate, men can still orgasm, but they lose the ability to ejaculate.”

Yet patients aren't receiving specialist advice or support. Results from the 2016 U.K. Life After Prostate Cancer Diagnosis study revealed that few men with prostate cancer were offered help with sexual problems.

Overall, 57 per cent of men were not offered any of these interventions at all.

Offered a choice between radiotherapy followed by testosterone-lowering hormone treatment, or a radical prostatectomy (surgical removal of his prostate), Elvin chose surgery because he was told it would be nerve-sparing, and he might, be able to manage intercourse again.

He learned that if he hadn't been operated on in August 2016, his tumour would, within weeks, have spread, making his cancer incurable. Although he feels lucky, he says the treatment negatively impacted his ability to have sex, his confidence, his personality and his relationship.

“I tried pumps and masturbation, pelvic floor exercises and Viagra, all of which helped to a certain extent, but by July 2017 I was becoming increasingly frustrated and agitated,” he recalls. “I missed the spontaneity of sex. I started to feel very unsure of myself, with my confidence seeping away, and worse, I felt very, very angry.

“It wasn't Jude's fault at all, but I began to argue with her all the time. The arguments were about things that had happened years before — I was completely unreasonable and irrationally jealous. The truth is, I knew I wasn't the man I was before my cancer, and I couldn't come to terms with that.”

Then, on a trip to Barcelona — and to his great shame and regret — he attacked his wife. “Following another argument, I got into such a blind rage that I actually lifted her up and threw her against some shutters. It scared the life out of her, and me. It was horrific.

“The next morning, we spoke about it. She said I had been unrecognizable and she'd been frightened for her life. We both came to the conclusion that I desperately needed help.”

Wittmann says sex lives benefit after prostate cancer treatment if men and their partners grieve the sexual changes they're experiencing and consider non-penetrative strategies for sexual pleasure.

“It is not necessary for men to lose their sex lives just because their erections are not working well,” she explains. “There is plenty more of their sexuality to draw on. And for some men, erections will not be very affected or will return fairly well over time. There are also practical tools — vacuum devices, injections, pills, penile implants — and sex therapy and support groups, which can help too.”

Elvin had two years of therapy to work through his feelings, come to terms with his loss, and find new ways to enjoy sex. His marriage is stronger.

“Before, we never talked about our sex life. Now we have to talk openly and candidly. I am so grateful to Jude that she never left me when I was at my worst. She said she wanted to, on many occasions, but she couldn't because her love was unconditional.”

The new prostate cancer care guidelines take partners like Judith into account. Wittmann says they too end up with unmet sexual needs, but don't always feel entitled to be upset. The guidelines also consider the needs and experiences of men from different ethnic backgrounds, or who are LGBTQ+.

“For too long, sexual health research in prostate cancer has focused on white, heterosexual men,” says Karen Robb, a chartered physiotherapist and program implementation director for Cancer Movember U.K. “The guidelines are an important step in acknowledging these limitations and ensuring that equity, diversity and inclusion sit at the centre of high-quality care.”

Elvin was involved in the early stages of designing the guidelines and is now an ambassador for the men's health charity Movember. “I think we all need to learn to talk about our sexual health just as easily as we do about our dental health,” he says.

One in eight men in the U.K. will be diagnosed with prostate cancer in their lifetime, with approximately 1.4 million men diagnosed globally in 2020. Hilary Freeman