Talking to People About Your Prostate Cancer Diagnosis

About 1 in 8 men learn they have prostate cancer in their lifetime. In fact, it is the second leading cause of cancer death in men in the United States. But after hearing the news, many men find it difficult to talk about it or seek help and support along their cancer journey.

While no one is quite sure 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, says that it may have something to do with how the diagnosis and the side effects of treatment effects may affect your sex life and your manhood.

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

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

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

It’s more than just cancer

Jerry Deans knows this feeling all too well. It’s been over 22 years since Deans found out he had prostate cancer. In 1999, when Deans was 55, a hunch to undergo a physical exam led to the diagnosis.

No one he knew had prostate cancer. Deans asked his doctor if he knew anyone he could connect with. It turned out that there were several people, but none of them told anyone about their condition.

“If men are afraid of it, they won’t share it. [They] don’t call other men and say, ‘hey, i have prostate cancer and i’m scared of dying. What should I do about it? “They just don’t do that,” Deans says.

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Instead, the trend is to search for it on the Internet. Deans says it can be overwhelming.

“It’s like drinking from a fire hose – you’re just overwhelmed by it all. So you need the support of others.

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 that for good. So, Deans says he didn’t bother to contact a support group.

Unfortunately, the cancer returned about a year later.

Despite radiation therapy and chemotherapy, Deans’ specific protein antigen (PSA) levels – a type of protein produced by prostate cells that can measure cancer progression – continued to rise.

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

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

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As he walked out of the doctor’s office, he picked up a brochure for a prostate cancer support group.

When he first met, he not only met other people going through a similar journey, but also a urologist with prostate cancer. Deans was able to get a second opinion, learn coping strategies, and gain insight into other people’s prostate cancer journey.

The support group became a space where he could “talk freely” about anything that troubled him, or use it as an educational resource to learn more about his condition.

“Cancer doesn’t care if you pay attention to it or if you forget it and deny it. If you want to survive to live a long, healthy life, you have to do it with information, support, education and standing up for yourself, ”says Deans.

The couple’s illness

Prostate cancer, in addition to having a physical and emotional impact on you, can lead to physical side effects and a lack of communication that can affect your relationship with your partner.

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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 signs of recurring disease ( NERD). But the side effects left him “severely helpless and incontinent.”

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

“So this part is probably the most traumatic part that a lot of people don’t know. “

Filson encourages his partners to go to doctor’s visits, especially the first time. Often times, partners can communicate reality better, report abnormal symptoms, or push men to get tested.

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

“I’m trying to assess the relationship and see how the communication goes,” Filson says. “You often get subtle clues about partners rolling their eyes at loved ones who don’t disclose information or are stubborn.”

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Because female partners tend to be the primary caregivers for men with prostate cancer, Filson is able to prepare them for what lies ahead.

For Vivian Conboy, 49, her 55-year-old husband’s diagnosis of Stage IV prostate cancer was devastating news in 2020. But what surprised her most 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 from the locals because my husband has it and he’s very involved in the community,” says Conboy, from New Jersey.

“People said, ‘Oh yeah, I got that. Oh yeah, I got that,’ but it’s very taboo.”

It is always difficult for her husband to open up about this. Conboy says he tends to joke about it in front of his brothers or friends on things like paying for life insurance. But she attributes this to a “coping mechanism”.

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As a primary caregiver, Conboy didn’t think he could talk to his friends about her husband’s health or the changes in their intimate life. So she contacted a local support group for help and advice.

“It helped to read other people’s stories. I was just there to empathize and it was good to know that you’re not the only one going through this, ”says Conboy.

Now, she encourages her nephews and sons to get tested early and work to stay healthy, including eating healthy. She says it’s her way of normalizing the discussion about prostate cancer.

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

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

But it still took its toll on him.

“One thing I’ve learned during my cancer journey is that it’s very difficult to deal with someone who is told they have cancer,” says Hoffman. It was also his wife who pushed him to contact a local support group run by Us TOO, a national prostate cancer support organization with local chapters, for help.

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

The importance of support

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

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Getting informed can be stimulating, no matter what stage your cancer is in.

“They can just feel safe and they can say or say nothing,” says Wright. “But the magic happens after the meeting. The guys don’t want to go home.

Telling others about your diagnosis can:

  • Offer companionship and support
  • Make you feel less alone or isolated
  • Educate you and make you feel able to cope with your diagnosis and treatment
  • Open up additional resources that can provide things like do’s and don’ts, help manage side effects, suggestions for healthcare providers, and tips for living a healthier lifestyle.
  • Relieve depression and anxiety
  • Help you learn coping skills and learn tools to deal with stress
  • Provide a safe space for you to speak openly about your feelings, doubts and fears

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

In addition to support groups, you can also rely on the cancer care team at your hospital. This includes a variety of health professionals such as therapists, social workers, hospice specialists and oncologists. Often the resources are available free of charge. If you have any questions, ask your doctor.

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

If you are concerned about side effects from medications or treatments, bladder problems, and sexual dysfunction, it is important to let your doctor know. They may be able to find treatment options that work best for you.

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