Cancer diagnosis brought us closer, but it also forced us to have more difficult conversations

An Irish Prostate Cancer Outcomes Research project is working on implementing a questionnaire assessing the sexual concerns of partners of patients with prostate cancer.

Wallace Costa, left, whose parter Martin Sweeney was diagnosed with prostate cancer, would like others — especially doctors — to understand that partners also live through the uncertainty.

JUST over a decade ago, Martin Sweeney, 59, was diagnosed with prostate cancer. The Dublin man had a family history, so was aware of the disease, but “didn’t do anything about it”.

His GP included a PSA test in his annual bloods and, when his levels jumped in the space of a year, he was referred for further investigation, which led to a diagnosis of prostate cancer.

Sweeney had a radical prostatectomy.

“I didn’t properly talk to Wallace [Costa, his partner] about what was going to happen to us and to him, which is something I regret to this day. But the only thing I can say is that I was not in a place where I could make any rational decisions about things because, overwhelmingly, cancer was in my head, and I just wanted to have it gone.”

Costa, for his part, would like others — especially doctors — to understand that partners also live through the uncertainty.

He says: “A little empathy and inclusion in conversations can make an enormous difference.”

One medic working to address the impact a prostate cancer diagnosis can have on partners is Mr Daniel Galvin, a consultant urologist at St Vincent’s and the Mater hospitals, and the principal investigator of the Irish Prostate Cancer Outcomes Research (Ipcor) project.

Ipcor’s findings have revealed several key insights into prostate cancer diagnosis and treatment in Ireland.

At the same time, an adjunct patient group, the Lived Experience Advisory Panel (Leap), comprises 12 men who have experienced prostate cancer treatments.

“We’ve linked in with some of them around forming a similar group with family members and partners,” says Galvin.

“We also held an open meeting last year in UCD, inviting the partners or carers of men with prostate cancer to attend.”

Ipcor is also working to implement a questionnaire on the sexual concerns in partners of patients with prostate cancer (Scippp-f), he says, which examines the impact a prostate cancer diagnosis has on partners.

Sweeney is chair of Leap and is also co-lead, along with radiation oncologist Dr Paul Kelly of the PRO-ACT Survey — a Cancer Trials Ireland patient-led initiative exploring the impact of prostate cancer treatment on sexual health, relationships, and overall wellbeing.

“People are living longer,” Sweeney says. “They’re being diagnosed earlier. Treatments are more effective, so they’re getting over their treatments. All of which is undeniably positive, but the flipside is “we have no professional services … in place to address these unmet needs of patients and partners.”

Sweeney, a retired civil servant, is now cancer-free but has ongoing sexual function issues.

“I wasn’t properly prepared for the sexual wellbeing aspect of things, and the fact that I changed psychologically in terms of how I felt about sex.”

While medication and devices for erectile dysfunction helped, Sweeney found the real challenge wasn’t so much the physical aspect, but the psychological and emotional adjustment involved. “The big issue is that intimacy and sex are totally different things,” he says, explaining that open communication helped the couple navigate their new normal.

The surgery has left Sweeney infertile. At the time, he feels “there wasn’t a real understanding that as a gay man … heading for 50, I might want to have a family in the future”.

He also has ongoing issues with being unable to fully empty his bladder and may have to have a procedure to remedy it at some point.

Costa says: “The diagnosis reshaped our relationship. It brought us closer in many ways, but also forced us to have more open and difficult conversations. We’ve had to communicate differently, sometimes awkwardly, but with greater honesty and patience.”

He adds that he wishes he had known that “the journey doesn’t end with treatment”.

“It continues in quieter, ongoing ways for both of us.”

Worries and fears

Darren Hedden whio was treated for Prostate cancer in 2023 with his wife Pauline . Photograph Moya Nolan

Darren Hedden (53), who is now cancer-free, was diagnosed with prostate cancer in April 2023.

His GP had initially noticed his PSA reading was a little high for his age so, out of an abundance of caution, referred him to a urologist who reviewed his bloods, performed a digital rectal exam (DRE) and sent him for an MRI — which was clear.

Six months later, Hedden’s PSA levels remained elevated, so a biopsy was performed. This resulted in a diagnosis of prostate cancer.

Hedden, a dad of three, is diligent when it comes to looking after his health, so his diagnosis came as a shock to him and to his wife Pauline, who was, she says, “definitely very much blindsided”.

He was given the options of active surveillance, radiation, or surgery to remove his prostate gland, with the last recommended by his surgeon — and the option he ultimately chose — having discussed the pros and cons of each.

The couple were able to discuss their worries and fears with each other from day one. “We’ve always been very open and honest with each other, and we feel we can definitely talk to each other about everything and anything,” Hedden says.

He began pelvic floor physio in August before his September surgery, and feels his commitment to his own recovery, which he kept up post-op, stood to him.

“[Pelvic floor exercises] absolutely help with recovery,” agrees Galvin.

“It also empowers the patient and makes the patient proactive in the recovery. They’re doing something that’s benefitting themselves … and [it] engages them in the whole process.”

Hedden’s surgery was a success, and his urinary and sexual function gradually returned. When bladder control was regained, “mentally you begin to feel normal”, he says, although as his seminal vesicles were removed along with his prostate, the resultant ‘dry’ orgasms were an adjustment. “It is the same sensation, but it’s a different sensation”.

He can get an erection without medication but finds the knowledge of having that back-up reassuring.

“Once he came home, the first week was hard because he isn’t used to not doing anything,” Pauline says.

“You don’t often see him quite low or worried; he’s an optimist. So that was hard because he was genuinely a bit fearful as to how things would be.”

Hedden, who was very open with friends and family about his cancer journey, was reassured by talking to a man who had been through prostate cancer surgery a year previously, and realising that his recovery was actually ahead of schedule.

“That gave him a bit of confidence, and I think that’s why he likes to talk to other people about it,” Pauline says, referring to her husband’s patient advocacy work.

Both he and Martin Sweeney are ambassadors for the Marie Keating Foundation, sharing their stories to help others.

Impact on sex life

Dermot Kelly, who is a psychosexual therapist at Mind and Body Works’ Dublin clinic, and has had prostate cancer himself, says that while medical treatment can be excellent, discussion around people’s sex life post-op is confined to the mechanics of the physical — “whether you can get an erection or not”, with the bigger picture of the impact on intimacy ignored.

Couples can be unaware of how or where to reach out for help in dealing with the new reality of their sexual and intimate lives, he says, “unless one or other has the idea to go to therapy”.

For those who don’t wish to or are unable to attend therapy, Kelly suggests supporting the person in opening up a little bit, by “asking questions around, ‘tell me about what’s happening for you? How are you physically, are you able to get erections or not, are you interested in sex or not?’

When the time is right, he suggests partners bring up their own intimacy needs. “Start with ‘what’s happening for you?’ Then begin to introduce ‘this is what I’d like’, ‘this is what I need from you’ and ‘can we work on this together then?’

If therapy is an option, even one session with a qualified therapist can help a couple start a conversation, particularly if they haven’t been having the conversations about sex before, Kelly says.

Therapy can also help men understand that the changes they’re experiencing are quite typical after prostatectomy, hormone therapy, or radiotherapy, Kelly says.

When people don’t talk about these issues or don’t hear others talking about them, they can start to believe that no one else is going through the same thing, resulting in a significant sense of isolation. This, Kelly says, is why support groups are so valuable. “Men go into the groups and realise, ‘OK, I’m not the only one’, which is a huge insight.”

Risks and symptoms

• Prostate cancer is the most common male cancer in Ireland.
• One in six people born with a prostate will be diagnosed in their lifetime.
• Rates of prostate cancer are higher in black men, with one in four getting diagnosed with prostate cancer.
• Men are two and a half times more likely to get prostate cancer if their father or brother had it.
• Inherited genes, especially BRCA 2, being overweight or obese, can also be risk factors to be aware of.
• Prostate cancer responds well to treatment and, if detected early, it can be treated successfully.
• Early detection saves lives, allowing for better treatment options that may include a non-invasive active surveillance plan if suitable, and can ensure a more straightforward cancer journey – and most importantly, improve survival outcomes and quality of life.
• A digital rectal examination may be requested depending on the PSA level and any symptoms, deeming it to be part of the diagnostic plan.
• Having regular PSA levels checked as instructed by your GP or urologist can help to detect prostate problems or cancer in its earliest stages.
• Prostate cancer can often be asymptomatic. This is why open and honest communication between men and their GPs is so vital and why we urge men to ask about that important PSA blood test.

Signs and symptoms to be aware of

• Dysuria: difficulty and pain passing urine.
• Urgency: difficult to postpone passing urine.
• Frequency: going to the toilet more frequently than before.
• Nocturia: getting up more than twice a night to pass urine.
• Hesitancy: taking time to get going when passing urine.
• Flow: has become weak or intermittent.
• Incomplete emptying: feeling that the bladder has not emptied properly.
• Blood: present in the urine.
• Erectile dysfunction: inability to get an erection

Do not wait for signs and symptoms to present before taking action, as prostate cancer is very often symptom-free, particularly in its early stages. 

If you are having urinary symptoms, speak to your GP. These can occur for a variety of reasons and may not be cancer-related, but the sooner they are addressed, the better the outcome.

Information supplied by the Marie Keating Foundation, compiled by director of nursing services Helen Forristal. 

• See mariekeating.ie