June 10, 2024 – Prostate cancer has an incredible impact on men. According to the American Cancer Society, it’s the second most typical cancer after skin cancer (an estimated 290,000 cases will likely be diagnosed within the United States in 2024) and the second deadliest cancer after lung cancer (an estimated 35,000 deaths).
Lower-risk treatment for prostate cancer with surgery or radiation could be stressful for men not only due to the associated risk of death, but in addition due to unwanted effects resembling erectile dysfunction, lack of libido and incontinence, which could be socially disabling and require adult pads or diapers. Treatment of advanced cancers, resembling with hormones or chemotherapy, can have more serious unwanted effects resembling memory loss and hot flashes.
For this reason, prostate cancer is also known as a “couple’s disease” since it also affects spouses and partners who provide take care of the affected person.
A brand new, unique survey of over 1,100 caregivers shows the extent to which prostate cancer burdens not only patients but in addition their partners. Most patients have what’s generally known as a favourable risk prostate cancer, meaning they lead a largely untroubled life. This applies each to patients with treated cancer and to those with fatal high-grade prostate cancer.
Europa Uomo (Italian for ‘Europe Man’), a patient advocacy group representing 27 patient support groups across Europe, recently conducted the primary large-scale survey of partners of prostate cancer patients.
André Deschamps, former president of Europa Uomo and prostate cancer patient who coordinated the study, presented Data from the survey of 1,135 patient partners to the Congress of the European Association of Urology in April in Paris.
Only 20% of partners said they’d been given sexual education by a health care provider before treatment – although greater than half said their sex life was necessary to them. Half of those surveyed reported that their partner suffered from incontinence after treatment – but 18% said their doctor didn’t warn them of the danger of incontinence before treatment. One in six said they’d not been fully informed concerning the possible consequences of the treatment.
“There is a significant information gap here,” said Deschamps. “All stakeholders need to work harder to ensure that patients and their partners receive adequate information.”
The partners stated that they’d not been informed concerning the possible consequences of surgery or radiation (16%), they’d not been informed concerning the risk of incontinence (18%) they usually had not been informed concerning the risk of 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 generally face greater potential emotional distress from life-threatening illnesses than the patients themselves.
“Nurses often suffer from depression, anxiety and post-traumatic stress disorder at higher rates than the patients they care for. Many nurses suffer in silence, emphasizing the need for interventions and supportive services,” says Applebaum, who describes her experiences as her father's caregiver and as a nursing researcher in her book. Stand By Me: A guide to modern, meaningful care.
As an example, she cited a study The study found that 6 years after cancer treatment, 20% of patients and 36% of caregivers could have experienced post-traumatic stress disorder. Patients within the study suffered from quite a lot of cancers, including prostate, breast and kidney cancer.
Stacy Loeb, MD, a urologist and lifestyle medicine physician at NYU Langone Health's Perlmutter Cancer Center, just published a study of 200 female partners of prostate cancer patients within the U.S. that showed the numerous impact of prostate cancer on their relationship and sexual quality of life. (She said one other study of male and nonbinary partners of prostate cancer patients is within the works.)
She said survey respondents consistently cited “loss of connection” as a pair, high levels of stress and poor communication with their partners and health care providers concerning the impact of sexual dysfunction brought on by prostate cancer treatment. In addition, she said they suffered from depression at higher rates than American women in the identical age group studied in previous studies.
Loeb said one in all the issues is that oncology and sexual medicine are different subspecialties of urology. In specialized practices within the U.S. and Europe, the urologists who treat prostate cancer could also be separate from those that deal with treating sexual dysfunction. Many partners in Loeb's study expressed interest in referrals to sexologists, sex therapists and self-help 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, New Jersey, has led a web-based support group, Fans for the Cure, which helps the feminine partners of men with all types of prostate cancer. Her husband, John, a public relations agent, died in 2014 at age 54 from metastatic prostate cancer that spread to his bones and liver 10 years after his diagnosis.
Shaffer said she and her husband did their best to “keep things normal” so their two young children would have positive memories of their father.
“Because prostate cancer definitely impacts marriage and affects women as much as men,” she said. “I would say from the support group that women always feel that prostate cancer is a danger lurking around the corner. We feel that very emotionally.”
She said intimacy was a key concern and that the Uomo study, if it captured the issue in any respect, had understated it.
“Women can talk very openly and honestly about sexual dysfunction and intimacy in our relationships. Even if they're just listening to other women, even if they're uncomfortable talking about it, they're just listening to other women.”
Shaffer, a former middle school teacher and public relations agent, said she and her husband felt doctors had failed to organize them for the complete impact of the treatment on John as a patient, who experienced more severe than expected hot flashes and suffered from persistent incontinence consequently of the hormone therapy. She, as a caregiver, also failed to answer the impact on their lives, including sexually and emotionally.
With advanced prostate cancer, physical contact can proceed, however the disease and its treatment can result in the tip of sexual activity. “It's a frustrating issue,” she said.
Shaffer said that intimacy after treatment relies on the state of the connection before treatment.
Most of the three.1 million men who’ve prostate cancer within the U.S. have a low-risk prostate cancer that may still have psychological effects. Many have already got diminished sexual performance as a consequence of age and other health problems, Loeb said. Prostate cancer patients are diagnosed with the disease at a median age of 68.
Sixty percent of patients with low-grade prostate cancer select a monitoring protocol called “active surveillance” and forgo aggressive therapy with the danger of unwanted effects that may result in erectile dysfunction and incontinence.
Gary Kebbel, 69, is a retired journalism professor from Lincoln, Nebraska. He has been married to 79-year-old Ken Mason since 2013; the 2 have been partners for over 40 years.
Prostate cancer entered her life when Mason began energetic surveillance for low-risk prostate cancer over 12 years ago.
Kebbel, whose stepfather died of prostate cancer, said, “Prostate cancer is a challenge to your relationship, just as it would be if one spouse had been diagnosed with multiple sclerosis or something else. How do you deal with that? Are you the spouse who is there for the rest of your life, according to your vows, or not?”
A diagnosis of a serious illness provides a chance to take a look at the large picture and see yourself as an individual, he said. What type of person do you’re thinking that your spouse is? And how does your spouse relate to that? “And frankly, if you're having trouble dealing with your partner's illness, I think you should get therapy,” Kebbel said.
He said doctors often fail to treat prostate cancer as a “couple's disease” and overlook the impact of the cancer on the partner's life. He said partners should be involved in discussions and decisions because each partners may interpret and process the disease otherwise.
He said he and Mason, who can also be retired and used to work in retail, decided from the time of diagnosis to attend all doctor's appointments together.
He said the experience brought him and Mason closer together, which is consistent with Uomo's findings, which found that 43% of respondents said their bond had turn into closer. Uomo didn’t ask concerning the gender of respondents.
Kebbel said a side effect of Mason's diagnosis of prostate cancer, in addition to bladder and kidney cancer, was that he became more concerned along with his personal health and advocated for himself, following Mason's example in exploring his options.
“Partners and patients alike need to be more proactive in access to healthcare and advocate for greater influence and involvement with physicians and medical research and technology,” Kebbel said.