Dealing with prostate cancer can be a medical and emotional jungle. Every year in the United States, more than 220,000 men are diagnosed with the disease, and for many, dealing with the reality and expressing their fear of dying or living horribly with incontinence or impotence can be difficult.
The first two months after learning he had Stage 4 prostate cancer that had metastasized into his bones in November 2006, Gerry Heard lost his way “mentally and was overwhelmed.”
After diagnosis, he had “pity parties” and fell into depression. He eventually realized he had to do more for himself. “It dawned on me that no one was going to knock on my door and say ‘Here’s your cure. Have a nice day,’ ” Heard says.
He vowed to not “be a spectator the rest of my life, but to learn about my disease, be proactive about treatment, and to make lifestyle changes to enhance my chances.”
At his side was his sister, Mattie Glasper of Detroit, the oldest of Heard’s four siblings. “Our family is about faith and fight, and we were not going to take Gerry’s diagnosis lying down,” she says. She led formation “of our family adventure to help Gerry, who is a kind and compassionate man.”
Heard, an auto-supplier worker turned certified nurses’ assistant, joined the Cancer Support Community of Greater Ann Arbor after moving from Detroit. “The CSC was the beginning of the end of the depression that beset me. I started to realize that cancer was a part of my life, not all of it,” he says.
The CSC offers “a nurturing place to connect with others with cancer during and after individual experiences,” says Bonnie Dockham, founding program director.
Heard formed his team consisting of family and friends as well as religious and medical professionals. He got into meditation, joined a support program at the YMCA, and started exercising. He decided to travel, including going to the Grand Canyon, New York, and London.
“My spirit got reinvigorated and I made good use of every day. This reading, learning, and traveling got me into the great frame of mind” because he was living positively — “doing things to make myself better mentally and emotionally,” he says.
Heard says working with medical staff and the CSC has helped him accept death, “but not in a morbid way. It’s part of my life and the difficulties give me opportunities to help others.”
He also learned that there is no one person or one doctor who can tell you that one treatment is always the best procedure. “You must decide for yourself. It is your body and your decision, and no one can make it for you.”
Dr. Jim Abelson, a professor of psychiatry at the University of Michigan, says men often have emotional seclusion and may surround themselves with a cocoon of non-belief. Oftentimes, they are often uncomfortable talking about feelings.
“However, we are seeing improvements here, and men are now discussing their feelings more openly,” he says. “This is extremely important with this disease, where feelings are so intense.”
Abelson was diagnosed with prostate cancer in 2010, and had a prostatectomy some months post-diagnosis.
Dr. Daniela Wittmann
Dr. Daniela Wittmann, clinical assistant professor of urology and adjunct clinical assistant professor of social work, and leading member of the Jan and Dave Brandon Prostate Cancer Survivorship Program at the University of Michigan Department of Urology, agrees with Abelson in regards to improvements in men’s ability to talk about their emotions regarding survival, incontinence, and sexual health.
She says a big concern is related to sexual problems. “People grieve loss, so when a man experiences loss of libido and sexual competency, he feels lost,” she says. “Emotional support for the recovery of sexual health is critical to protect the long-term quality of life of prostate cancer survivors.
“It is important for this to be discussed with them and their partners,” Wittmann says. “Any patient needs to be empowered to discuss this topic with his health care provider. Patients may be grieving the changes in sexual function and be vulnerable. Yet they need to know what to ask and how to state it.”
Like Heard, Abelson had to learn how to deal positively with emotion in his life. An optimistic person, Abelson wondered what positive steps he could take. “I decided early that I would not die, so I opted for education, studying the different methods of treatment so I could fight the disease while minimizing the risks that most frightened me. For me, it was more about potential loss of potency than about mortality.”
Talking about prostate cancer without bringing up sex “runs the risk of doing a serious disservice to the disease,” Abelson says. “Eighty percent of men will die with prostate cancer, but only a small percentage will die from prostate cancer.”
Aggressive and potentially terminal prostate cancer is different from the prostate cancer encountered by most men. “Sexual side effects from prostatectomies seem like a huge risk,” Abelson says. “Otherwise, a case could be made for doing more of them. For many men, the emotions of prostate cancer are really about potency and reproductive capacity. This threat is often central in considering treatment options.”
The issue for any patient is that there are many known courses of treatment, but no attributable numbers to guide a patient on how many people have done each procedure. Patients have to investigate alternatives to learn what option is right based on their Prostate-Specific Antigen Test, Gleason score (grading prostate cancer tissue based on how it looks under a microscope), confinement of the cancer to the prostate gland or not, and related options.
Early detection is key to optimal outcomes and survival rates are high, Abelson says, adding annual medical checkups, screenings, and surveillance are critical.
Abelson has a family history of prostate cancer. His father had it and the treatment significantly reduced his quality of life. His brother also had it two years earlier than he, and his knowledge of the treatment options were imparted to Abelson and helped him focus on the emotional aspects of the issue. The family history facilitated early detection and the decision not to “watch and wait.” After thorough research of all options, Abelson opted for surgery.
He and his wife, Jamie, got advice from his brother and three potential treatment providers: two radiation oncologists, one who did external beam radiation and one who did implanted seed radiation, and a surgeon. He also had helpful discussions with U-M’s Wittmann.
“Programs like hers can really help with what is often the most challenging aspect of recovery, and can improve results,” he says.
Abelson’s work as a psychiatrist helped him engage the emotional aspects of his disease and to think about them in ways that let both facts and feelings shape his decision-making. “You can use emotions by trusting them to tell you what matters to you, but then access other parts of your brain to act wisely and sensibly as you make decisions that are not dominated by your first reactions.
“The strongest emotions … were rooted in fears about the possibility of having to live my life with urinary or bowel incontinence or serious erectile dysfunction,” he says. “Those possibilities definitely scared me.”
One thing that didn’t scare him was dying. “I knew from early detection statistics and my family’s history that I was not likely to die. I did not let that enter my mind as a possibility, and the probabilities were sufficiently in my favor that I was not forced to think much about this.
“I learned and grew from my experience. True, this is not a nice one and not one you want to handle, but if you face a serious health issue like prostate cancer, it is not simply going to go away. So grow from it,” he says.
Jamie Abelson, who is a board member of the CSC, says treatment for the emotional side effects of prostate cancer treatment goes on for years. “A couple must communicate well as they struggle to survive the disease and recover from treatment,” she says.
“Whatever the path a patient selects for treatment, emotions are important sign posts that give you information about what matters,” Jim Abelson says. “Pay attention to them. Listen to them. Talk about them. Keep thinking, finding allies, educating yourself, and making thoughtful decisions with the knowledge that there are no perfect solutions. Survival will come at some cost. But there are silver linings, perhaps most importantly in relationships with those you love.”
There are many treatments for prostate cancer. A patient must educate himself and his team and select the option that suits him best. Treatment options include surgery, radiation (brachytherapy or high-dose), cryotherapy, hormonal therapy, and watchful waiting. No one treatment is right or wrong.