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Talking to People About Your Prostate Cancer Diagnosis

About 1 in 8 men learn that they have prostate cancer sometime during their lifetime. In fact, it’s the second leading cause of cancer death among men in the U.S. But after they get the news, many men find it hard to talk about it or to reach out for help and support as they navigate their cancer journey.

While no one really knows why there’s shame and stigma attached to prostate cancer, Christopher Filson, MD, assistant professor of urology at Emory University School of Medicine in Atlanta, says it may have something to do with how the diagnosis and side effects of treatment side effects can affect your sex life and how manly you feel.

“[These] may be topics that men are very cautious about discussing with family members, with friends, and others, making it a little bit more sensitive. And may be more difficult for them to branch out to get more information from their typical support networks,” Filson says.

The prostate is a walnut-sized gland located right below the bladder and surrounds the urethra — a tube that carries urine out of your body. The prostate also makes and stores fluid that helps your body make semen. But when cancer cells grow in that gland, Filson says it can “decrease sexual function and urinary control.”

“[This] can be the hardest time for a man, particularly if they’re still anxious about cancer care.”

Jerry Deans knows this feeling all too well. It’s been more than 22 years since Deans found out that he had prostate cancer. In 1999, when Deans was 55, a gut feeling to get a physical led to the diagnosis.

Nobody he knew had prostate cancer. Deans asked his doctor if he knew anyone he could connect with. Turns out, there were several people, but none of them were telling anyone about their condition.

“If men are afraid of it, they’re not going to share it. [They] just don’t call up on other men and say, ‘Hey, I’ve got prostate cancer and I’m scared to death. What do I do about this?’ They just don’t do that,” Deans says.

Instead, the tendency is to look it up on the internet. Deans says that can be overwhelming.

“It’s like drinking out of a fire hose — you’re just overwhelmed by it all. So, you do need support of other people.”

Finding out that you have prostate cancer can take a toll on your mental health and cause:

Right after his diagnosis, Deans underwent surgery, and the doctor told him he might have beaten this for good. So, Deans says he didn’t bother reaching out to a support group.

Unfortunately, the cancer came back about a year later.

Despite radiation and chemotherapy, Deans’s levels of protein-specific antigen (PSA) — a type of protein produced by prostate cells that can measure a cancer’s progression — kept climbing.

An oncologist told Deans and his wife that his cancer had spread, and that he may have it for the rest of his life.

“We were very depressed,” Deans says. “It’s one of the lowest days in my life to find out that I had metastatic prostate cancer somewhere in my body.

On his way out of the doctor’s office, he picked up a brochure for a prostate cancer support group.

At his first meeting, he not only met others going through a similar journey, but also a urologist who had prostate cancer. Deans was able to get a second opinion, learn coping strategies, and get insight into other people’s prostate cancer journeys.

The support group became a space where he could “speak freely” about whatever was troubling him, or use it as an educational resource to learn more about his condition.

“The cancer doesn’t care whether you pay attention to it, or just forget about it and deny it. If you want to survive to live a long, healthy life, then you need to do that with information, support, education, and advocate for yourself,” Deans says.

Prostate cancer, besides taking a physical and emotional toll on you, can bring physical side effects and a lack of communication that can affect your relationship with your partner.

Bob Wright, 74, had no symptoms when he found out he had prostate cancer in 2007. After a few years of treatment, doctors told him he had no evidence of recurring disease (NERD). But the side effects left him “severely impotent and incontinent.”

“I still remember a poster that said prostate cancer is the couple’s disease. Because many men, as a result of having treatment for prostate cancer, the radiation or surgery, end up being impotent, and that affects the couple’s relationship,” Wright, a native of Austin, TX, says.

“So that part is probably the most traumatic part many don’t know.”

Filson encourages partners to come along to doctor visits, especially the first time. Often, partners can communicate better about the reality, point out abnormal symptoms, or push men to get tested.

Having a partner there can be especially helpful if you feel shame or embarrassment about your prostate cancer diagnosis or symptoms.

“I try to gauge the relationship and see how the communication is,” Filson says. “You often get subtle clues as to partners who roll their eyes about their significant others not disclosing information or being stubborn.”

Because female partners tend to become primary caregivers to men with prostate cancer, Filson is able to prepare them for what’s to come.

For Vivian Conboy, 49, her 55-year-old husband’s stage IV prostate cancer diagnosis came as devastating news in 2020. But what surprised her more was that there were family members who had prostate cancer but never shared anything about it.

“I’m starting to hear more about prostate cancer now from local people because my husband has it and he’s very involved in the community,” Conboy, a New Jersey native, says.

“People have come out, ‘Oh yeah, I have that. Oh yeah, I have this,’ But it’s very taboo.”

It’s still difficult for her husband to open up about it. Conboy says he tends to crack jokes about it in front of his brothers or friends about things like paying for life insurance. But she chalks it up to a “coping mechanism.”

As the primary caregiver, Conboy didn’t feel she could speak to her friends about her husband’s health or the changes in their intimate life. So, she reached out to a local support group for help and advice.

“It helped to read other people’s stories. I was just here to commiserate and it was good knowing you’re not the only one going through it,” Conboy says.

Now, she encourages her nephews and sons to get tested early and work on staying healthy, including eating healthfully. She says it’s her way to normalize the discussion around prostate cancer.

“There’s nothing to be embarrassed or shameful about.”

When Keith Hoffman’s PSA test showed slightly elevated numbers, it was his then-fiancé (now-wife) who encouraged this 62-year-old to go to a urologist. Fortunately for Hoffman, his prostate cancer was caught early, and he was able to have surgery the same month.

But it still took a toll on him.

“Something I learned in the cancer journey was that it’s very hard to deal with anyone being told they have cancer,” Hoffman says. It was also his wife who pushed him to reach out to a local support group led by Us TOO, a national prostate cancer support organization with local chapters, to get help.

“It gives men the opportunity to talk to other men and their caregivers about all aspects of the process from not just the obvious comfort of doctors and specialties, but choice of treatment, tips, or things to recognize along the way in terms of soreness or expectation of recovery time from a lay person’s set up,” Hoffman says. He relied on the group’s support and camaraderie so much that he decided to join the national organization’s board of directors.

Hoffman and Wright met at the same local chapter in Austin, TX. Both attest to how important and “valuable” it is to seek help, share your journey, and talk about your diagnosis with peers — especially those who’ve been through similar obstacles.

Getting informed can feel empowering no matter what stage your cancer is in.

“They can just feel safe and they can say or not say anything,” Wright says. “But the magic happens after the meeting. The guys don’t want to go home.”

Talking to others about your diagnosis can:

  • Provide camaraderie and support
  • Make you feel less alone or isolated
  • Educate you and make you feel empowered to face your diagnosis and treatment
  • Open up additional resources that can provide things like treatment dos and don’ts, help managing side effects, suggestions for health care providers, and tips for living a healthier lifestyle
  • Ease depression and anxiety
  • Help you learn coping skills and gain tools to deal with stress
  • Provide a safe space for you to talk openly about your feelings, doubts, and fears

If you’re unable to locate a support group in your area, you can find many virtual communities to join and share your journey with.

Besides support groups, you can also lean on your cancer care team at your hospital. This includes a variety of health care professionals like therapists, social workers, palliative care specialists, and oncologists. Often, the resources are available at no cost. If you have questions, ask your doctor about it.

Exercises like yoga and meditation, as well as counseling with a therapist, can also improve your mood and help you navigate your cancer journey.

If you’re worried about medication or treatment side effects, bladder issues, and sexual dysfunction, it’s important to let your doctor know. They may be able to find treatment options that work better for you.

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