The Unknowns Challenge Prostate Cancer Patient Partners

7 min read

June 10, 2024 -- Prostate cancer has a huge impact on men. It’s the second most common cancer after skin cancer (an estimated 290,00 cases will be diagnosed in 2024 in the U.S.) and the second most deadly cancer after lung cancer (an estimated 35,000 deaths), according to the American Cancer Society.

Treatment of lower-risk prostate cancer with surgery or radiation can take its toll on men not just because it brings the risk of death, but because it carries side effects like erectile dysfunction, loss of libido, and incontinence, which can be socially disabling and require adult pads or diapers. Treatment of more advanced cancers, such as with hormones or chemo,  can have more severe side effects, such as memory loss and hot flashes.

Because of this, prostate cancer often is referred to as a “couple’s disease” because it impacts spouses and partners who serve as caregivers.

A new first-of-its-kind survey of over 1,100 caregivers shows the extent to which prostate cancer takes its toll not only on patients but also on partners of patients. Most patients have what’s known as favorable-risk prostate cancer, meaning they live largely uninterrupted lives and extends to those with treated cancers and those with deadly high-grade prostate cancer. 

Europa Uomo (Italian for “Europe man”), a patient advocacy group representing 27 patient support groups in countries across Europe, conducted recently the first-ever large-scale survey for partners of prostate cancer patients. 

Prostate cancer patient André Deschamps, past chairman of Europa Uomo, who coordinated the study, presented data from the survey of 1,135 patient partners to the European Association of Urology Congress in April in Paris. 

Only 20% of partners said they had received information about sexuality from a health professional before treatment – even though more than half said their sex life is important to them. Half of the respondents reported that their partner had incontinence after treatment – yet 18% said their health care provider had not mentioned the risk of incontinence before treatment. One in 6 said they had not been made fully aware of the possible consequences of treatment.

“There is a significant information gap here," Deschamps said. "All stakeholders must work harder to make sure that patients and their partners get appropriate information.”

Partners reported they were not informed about the potential consequences of treatment with surgery or radiation (16%), were not told about the risk of incontinence (18%), and were not informed about the risk for impotence (20%).

Allison Applebaum, PhD, a psychologist and founding director of the 14-year-old Caregivers Clinic at Memorial Sloan Kettering Cancer Center in New York City, said research has shown that caregivers of cancer patients in general face a greater potential emotional impact from life-threatening diseases than do patients themselves. 

“Caregivers often experience higher levels of depression, anxiety, and posttraumatic stress disorder than the patients they care for. Many caregivers suffer in silence, emphasizing the need for intervention and support services,” said Applebaum, who describes her experience as a caregiver to her father and a caregiving scientist in her book Stand By Me: A Guide to Navigating Modern, Meaningful Caregiving.

As an example, she cited one study that showed that 6 years after treatment for cancer, 20% of patients and 36% of caregivers had possible posttraumatic stress disorder. The patients in the study had a variety of cancers, including prostate, breast, and kidney. 

Stacy Loeb, MD, a urologist and lifestyle medicine specialist at NYU Langone Health’s Perlmutter Cancer Center, just published a study of 200 female partners of patients with prostate cancer in the U.S. that showed the significant impact of prostate cancer for their relationship and sexual quality of life. (She said another study is in the works on male and nonbinary partners of prostate cancer patients.)

She said survey respondents consistently cited “loss of connection” as a couple, high levels of distress, and poor communication with their spouses and health care providers about the impact of sexual dysfunction from prostate cancer treatment. In addition, she said there were higher levels of depression than American women in the same age groups evaluated in past studies.

Loeb said one of the issues is that oncology and sexual medicine are different subspecialties in urology. In specialized practices in the U.S. and Europe, the urologists who manage prostate cancer may be separate from those focused on managing sexual dysfunction. Many partners in Loeb’s study expressed an interest in referrals to sexual medicine specialists, sex therapists, and support groups.

Loeb and her team developed and validated a 19-question tool on the sexual health of female partners of prostate cancer patients. 

For the past 4 years, Karen Shaffer, 64, of Manalapan, NJ, has run an online support group for Fans for the Cure, helping female partners of men with the full range of prostate cancer. Her husband John, a public relations agent, died in 2014 at 54 from metastatic prostate cancer that spread to his bones and liver, 10 years after his diagnosis.

Shaffer said she and her husband did the best that they could to “keep it normal” so their two young children had positive memories of their father. 

“Because prostate cancer definitely affects marriage and affects the women just as much it affects the men,” she said. “Based on the support group, I would say women always feel there's danger lurking around the next corner from prostate cancer. We feel this very emotionally.”

She said intimacy is a key concern and that the Uomo study, if anything, captured but understated the issue.

“Women can be very frank and open about sexual dysfunction and intimacy in our relationships. Even if they're just listening to other women, even if they're uncomfortable talking, but they're just listening to other women.”

Shaffer, a former middle school teacher and public relations agent, said she and her husband felt doctors did not prepare them for the full impact of the treatment on John as a patient, who experienced more intense hot flashes from hormone therapy than he expected and permanent incontinence, and nor her as a caregiver for the effect on their lives, including sexually and emotionally.

In the case of advanced prostate cancer, she said, physical contact can continue, but the disease and its treatment can lead to the end of sexual intercourse. “It’s a frustrating proposition,” she said.

Shaffer said intimacy after treatment depends on the state of the relationship before treatment. 

Most of the 3.1 million men living with prostate cancer in the U.S. have low-risk prostate cancer, which can still have a psychological impact. Many already have diminished sexual powers because of age and other health issues, said Loeb. The average prostate cancer patient is diagnosed at age 68.

Sixty percent of the patients with low-grade prostate cancer opt for a monitoring protocol called active surveillance and choose not to undergo aggressive therapy that carries risks for side effects that can cause erectile dysfunction and incontinence. 

Gary Kebbel, 69, is a retired journalism professor from Lincoln, NE. He has been married to Ken Mason, 79, since 2013, and they’ve been partners for more than 40 years.

Prostate cancer entered their lives when Mason went on active surveillance of low-risk prostate cancer over 12 years ago. 

Kebbel, whose stepfather died from prostate cancer, said, “Prostate cancer is a challenge in your relationship just as if a spouse had been diagnosed with multiple sclerosis or anything else. How do you handle that? Are you the spouse there for the rest of your life according to your vows, or are you not?”

The diagnosis of a major disease is an opportunity to take a look at the bigger picture and what kind of person you are, he said. What kind of person do you think your spouse is? And what's your relationship? “And honestly, if you're having problems dealing with their illness, I think you ought to be in therapy,” Kebbel said. 

He said doctors often don’t manage prostate cancer as a “couple’s disease,” overlooking the impact of the cancer on the partner’s life. He said partners need to be included in discussions and decisions as both partners may interpret and process differently.

He said he and Mason, who also is retired and used to work in retail sales, decided from the time of diagnosis that they would attend all medical visits together.

He said this experience has brought him and Mason closer, which jibes with the Uomo findings that 43% of respondents said their bonds grew closer. Uomo did not ask about the sex of the respondents.

Kebbel said a side effect of Mason’s diagnosis with cancer of the prostate and also bladder and kidney cancers was he became more involved in managing his personal health and advocating for himself and following Mason’s example in researching his options.

“Partners like patients have to be more proactive in accessing health care and advocate for themselves for greater empowerment and engagement with doctors and medical research and technology,” Kebbel said.