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Prostate Cancer: Talking to People About Your Diagnosis

Approximately 1 in every 8 men will be diagnosed with prostate cancer at some point in their lives. In fact, it is the second leading cause of cancer death in men in the United States. However, once diagnosed, many men find it difficult to talk about it or reach out for help and support as they navigate their cancer journey.

While no one knows why there is shame and stigma associated with prostate cancer, Christopher Filson, MD, assistant professor of urology at Emory University School of Medicine in Atlanta, believes it may be related to how the diagnosis and side effects of treatment can affect your sex life and how manly you feel.

“[These] may be topics that men are wary of discussing with family members, friends, and others, making the situation a little more delicate. And it may be more difficult for them to branch out from their usual support networks to obtain more information,” Filson says.

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The prostate is a walnut-sized gland that surrounds the urethra, which is a tube that transports urine out of your body. The prostate also produces and stores fluid that aids in the production of sperm in your body. However, Filson claims that when cancer cells grow in that gland, it can “decrease sexual function and urinary control.”

“[This] can be the most difficult time for a man, especially if he is still concerned about cancer treatment.”

It’s Not Just About Cancer

Jerry Deans is all too familiar with this sensation. Deans was diagnosed with prostate cancer more than 22 years ago. Deans received the diagnosis in 1999, when he was 55 years old, as a result of a gut feeling to get a physical.

He knew no one who had prostate cancer. Deans asked his doctor if he knew anyone with whom he could connect. It was discovered that there were several people present, but none of them were telling anyone about their condition.

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

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Instead, people tend to look it up on the internet. According to Deans, this can be overwhelming.

“It’s like drinking from a fire hose; you’re completely overwhelmed by it all. As a result, you will require the assistance of others.”

Finding out you have prostate cancer can have a negative impact on your mental health and cause:

Deans underwent surgery soon after his diagnosis, and the doctor told him he might have beaten this for good. As a result, Deans claims he did not bother reaching out to a support group.

Unfortunately, the cancer returned a year later.

Despite radiation and chemotherapy, Deans’ levels of protein-specific antigen (PSA), a type of protein produced by prostate cells that can be used to track the progression of cancer, continued to rise.

Deans and his wife were informed by an oncologist that his cancer had spread and that he might have it for the rest of his life.

Deans says, “We were very depressed.” “It was one of the darkest days of my life when I discovered I had metastatic prostate cancer somewhere in my body.”

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He picked up a brochure for a prostate cancer support group on his way out of the doctor’s office.

He met not only others going through a similar journey, but also a urologist who had prostate cancer, at his first meeting. Deans was able to get a second opinion, learn coping strategies, and gain insight into the experiences of others who had prostate cancer.

The support group became a place for him to “speak freely” about whatever was bothering him, as well as an educational resource for him to learn more about his condition.

“The cancer doesn’t care if you pay attention to it or ignore it and deny it. If you want to live a long, healthy life, you must arm yourself with information, support, education, and the ability to advocate for yourself, according to Deans.

The Disease of the Couple

Prostate cancer, in addition to taking a physical and emotional toll on you, can cause physical side effects and a lack of communication, both of which can have an impact on your relationship with your partner.

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When Bob Wright, 74, was diagnosed with prostate cancer in 2007, he had no symptoms. Doctors told him he had no evidence of recurring disease after a few years of treatment (NERD). However, the side effects rendered him “severely impotent and incontinent.”

“I remember seeing a sign that said prostate cancer is the couple’s disease. Because many men become impotent as a result of prostate cancer treatment, such as radiation or surgery, and this has an impact on the couple’s relationship,” Wright, an Austin, TX native, explains.

“So that part is probably the most traumatic part that many people are unaware of.”

Filson encourages partners to accompany him to doctor appointments, especially the first time. Partners can frequently improve communication about reality, point out abnormal symptoms, and encourage men to get tested.

Having a partner present can be especially beneficial if you are embarrassed or ashamed of your prostate cancer diagnosis or symptoms.

“I try to assess the relationship and see how well we communicate,” Filson says. “You often get subtle cues from partners who roll their eyes when their significant others don’t reveal information or are stubborn.”

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Filson is able to prepare female partners for what is to come because they are often the primary caregivers for men with prostate cancer.

In 2020, Vivian Conboy, 49, received devastating news when her 55-year-old husband was diagnosed with stage IV prostate cancer. What surprised her the most was that she had family members who had prostate cancer but never told anyone about it.

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

“People have said, ‘Oh yeah, I have that.’ Oh, yeah, I have this,’ but it’s extremely taboo.”

Her husband is still reluctant to talk about it. Conboy says he often makes jokes about it in front of his brothers or friends, such as paying for life insurance. She, on the other hand, chalks it up to a “coping mechanism.”

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Conboy didn’t feel she could talk to her friends about her husband’s health or the changes in their intimate life because she was the primary caregiver. As a result, she sought assistance and advice from a local support group.

“It was beneficial to read other people’s stories. “I was just here to commiserate, and it’s nice to know you’re not alone in this,” Conboy says.

She now encourages her nephews and sons to get tested early and work on staying healthy, which includes eating well. She claims it’s her way of normalising the conversation about prostate cancer.

“There is nothing to be ashamed or embarrassed about.”

Keith Hoffman’s then-fiancée (now-wife) encouraged him to see a urologist after his PSA test revealed slightly elevated levels. Hoffman was fortunate in that his prostate cancer was detected early, and he was able to have surgery the same month.

It did, however, take its toll on him.

“One thing I learned during my cancer journey is that it is extremely difficult to deal with anyone being told they have cancer,” Hoffman says. His wife also pushed him to seek help from a local support group led by Us TOO, a national prostate cancer support organisation with local chapters.

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

The Importance of Assistance

Hoffman and Wright met at the same Austin, Texas, local chapter. Both attest to how important and “valuable” it is to seek help, share your journey, and discuss your diagnosis with peers, particularly those who have faced similar challenges.

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Regardless of the stage of your cancer, being informed can feel empowering.

“They can simply feel safe and say or not say anything,” Wright explains. “However, the magic occurs after the meeting. The guys do not want to return home.”

Speaking with others about your diagnosis can help you:

Create a sense of community and support.
Make you feel less isolated or alone
Educate you and give you the confidence to face your diagnosis and treatment.
Open up additional resources that can provide information such as treatment dos and don’ts, assistance with side effects management, recommendations for health care providers, and tips for living a healthier lifestyle.
Depression and anxiety can be alleviated.
Assist you in learning coping skills and acquiring stress-management tools.
Make a safe space for you to express your feelings, doubts, and fears.
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If you can’t find a support group in your area, there are many virtual communities where you can share your experience.

Aside from support groups, you can also rely on your hospital’s cancer care team. This group includes therapists, social workers, palliative care specialists, and oncologists, among others. Frequently, the resources are free of charge. If you have any concerns, consult your doctor.

Yoga and meditation, as well as counselling with a therapist, can also help you improve your mood and navigate your cancer journey.

It is critical to notify your doctor if you are concerned about medication or treatment side effects, bladder issues, or sexual dysfunction. They might be able to find treatment options that are more suitable for you.

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