By Chuck Strand
Prostate cancer support groups can be an invaluable platform for peers exchanging questions, offering information and sharing their personal experiences with treatment options and related side effects. There is genuine empathy and unmatched credibility from interacting with others who have “been there and done that.” The collaborative format of a support group facilitates conversations among group members who are assembled with the common goal of empowering each other with relevant knowledge and best practices.
There are countless people who credit their quality of life—even their continuation of life—as a direct result of attending a support group. Even so, some guys with prostate cancer may respond to the initial suggestion of attending a support group with any one or all of the following: “No, thanks; I’m good” or “It’s probably helpful for some guys but I don’t need a support group” or “I can just go on the internet and get whatever information that I need about prostate cancer,” and “I’ve got this.”
“No, you don’t ‘got this,’” according to Jerry Deans, speaking from his own experience of battling prostate cancer for 16 years. He knows the drill because he was that guy—the one who resisted going to a support group meeting.
Jerry was diagnosed with prostate cancer in 1998 at the age of 50. Two years after having surgery, his PSA began to rise. In response, he started salvage radiation and underwent a series of 38 treatments. His PSA continued to rise while the treatments produced severe and persistent proctitis as a side effect, which required six surgeries for bowel obstructions, adhesions and surgical hernias. The radiation impacted Jerry so negatively in part, because of previous bowel surgery for diverticulitis. Immediately following the completion of radiation treatment, and while dealing with proctitis in 2002, his physician advised him to wait for his PSA to rise to a higher level before initiating hormone therapy. The physician advised Jerry that this would allow him to survive for two or three more years once he started treatment.
At that point, Jerry decided to join the Us TOO Richmond VA prostate cancer support group. After listening to the information and advice that he received from other prostate cancer survivors at the support group, he chose a new oncologist and immediately made nutritional and lifestyle adjustments to slow the inevitable growth of the cancer. In 2006, Jerry learned that the prostate cancer had metastasized to his lungs. With aggressive hormone treatment his lungs were cleared of the cancer in 2008. Although the cancer returned to his lungs one more time, it was again successfully treated with second-line hormonal therapy.
Jerry Deans has managed his prostate cancer for more than 16 years while maintaining his quality of life, which was due in part to his participation as an active member of his local Us TOO prostate cancer support group. And last year, he became a member of the board of directors for Us TOO International Prostate Cancer Education and Support Network, which includes more than 320 independent support groups led by volunteers across the United States and in several other countries. Support group and chapter meetings are free of charge and open to newly diagnosed patients, patients currently undergoing treatment, prostate cancer survivors, their spouses/partners, family members and friends, and health care professionals interested in sharing information and learning more about prostate cancer. This objective has been consistent since the nonprofit was founded in 1990 by five prostate cancer survivors who organized the first Us TOO support group meeting.
Jerry’s commitment to support groups extends beyond the prostate cancer community. In response to a number of tragic events impacting his family, including the death of his teenage daughter, the death of his first grandchild, and the paralysis of his son, Jerry and his wife, Patsi, have reached out to others in their local community. They’ve been leading a grief support group at their church and retreats in their community for 10 years to help others learn how to deal constructively with loss and trauma.
Jerry shares the following thoughts and feelings about his experience specific to managing prostate cancer and his empathy to the initial resistance to joining a prostate cancer support group.
Here is his overview on some of the benefits that can be gained from attending a prostate cancer support group:
It wasn’t that I didn’t value the concept of a support group. I just had the mindset that I would be able to go it alone. I grew up as a self-described survivor and a worst case scenario problem solver. I served as an officer in the U.S. Army and built my career on my leadership skills as warden of Marion Correctional Treatment Center, CEO of Southwestern Virginia Mental Health Institute in Marion, VA, and assistant commissioner of facility management with the Virginia Department of Behavioral Health and Disability Services. Before I retired, I had responsibility for managing 16 facilities throughout the Commonwealth of Virginia with approximately 8,700 employees and an annual budget of a half a billion dollars. I was the guy other people relied on for the answers and solutions to problems.
Cancer, as well as other trials and tragedies in life, teach us that we are not in control. This is a real shock for most of us. We live our lives thinking that we are the "masters of our destinies and controllers of our fate." A diagnosis of cancer robs us of that sense of control. It takes time and work to adjust to a new realization. You don’t know what you don’t know.
As it has for others, cancer has forced me to face my mortality at ever deeper levels. It has presented me with a problem for which there are no easy answers. Having been focused on being in control all my life, a diagnosis of cancer forced me into a very uncomfortable psychological and spiritual place, and participation in a support group helped me to navigate my way through it all.
It can be overwhelming to deal with a disease. Trying to do it alone adds the negative impact of isolation. A lot of men have a tough time admitting
that they don’t have it all together, they don’t have control, or they don’t know the solution. Most of us are uncomfortable with expressing our emotions. We have been culturally conditioned to hide our feelings and men are taught that feelings are a sign of weakness. We can do anger pretty well; maybe in part because it’s the only emotion expressed by men that is supported in our culture. There is real power in hanging out with other people who are going through the same experience. It’s about learning and gaining knowledge, which is empowering. Conversely, ignorance breeds insecurity and fear. Dealing with prostate cancer can be scary; partly because a guy cannot be in control of managing his health if he does not know what he is up against; or if he does not know his options for dealing with prostate cancer.
Fully participating in a support group (not just attending—although that is a start!) can be life changing – especially for the type of guy who’s been “the boss,” or the “go-to guy” with all of the answers for how to get things done. Depending on the guy’s personality, he may not naturally be open to seeking or accepting help from other guys. But if he can find the courage and confidence to put himself out there, the process of interacting with others at a support group meeting can be a very positive experience. Recognize that nobody is born with prostate cancer. Everyone who attends a prostate cancer support group shares a common bond and a passion for learning about treatment options that are best for their situation. Very few people who are diagnosed with prostate cancer have an existing knowledge base specific to the disease diagnosis, treatment options, side effects and quality of life. A diagnosis of prostate cancer can be overwhelming and crippling. It can be tough to identify a path or action plan, or even to know basic questions to ask in order to get the answers that are needed for moving forward. Not being sure where you are, where you are able to go, or how to get there is extremely unsettling, uncomfortable and downright scary. But take heart in the Chinese proverb that reassures while counseling, “To know the road ahead, ask those coming back.”
Ironically, some guys who are so intent on not appearing to be weak when hit with a prostate cancer diagnosis fail to ‘man up’ to dealing with reality. They react to their fear by withdrawing or ignoring the problem. They may not be aware that the disease isn’t all about them. Prostate cancer has a direct effect on spouses/partners and family members. Realizing this may result in the guy feeling a sense of guilt or shame for inconveniencing others or for not continuing to fill the role of being the one who others can lean on.
It is so important for a man to bring his wife or partner into the process of dealing with prostate cancer. Common side effects of treatments are erectile dysfunction and incontinence. Depending upon the situation these issues can be non-existent, temporary, or ongoing. There are treatments available that effectively manage both conditions but navigating through the process can take its toll on a relationship. For certain, a best-case outcome can only result from a man and his wife or partner working through these challenges together.
Sometimes the wife of a man with prostate cancer will attend a support group meeting alone. That can be very valuable for her since her life is directly impacted by her husband’s disease. There are break-out sessions at some of the mee ngs that are exclusively formed for the wives or partners to discuss issues among themselves. But sometimes a wife will attend a meeting to try to work around her husband not acknowledging his diagnosis. By not taking responsibility for managing the problem, his “head in the sand” attitude puts added pressure on his wife to mop up after him. If he is not owning his disease management, it’s impossible for his wife to manage his condition for him. Her attempt of trying to spoon feed information to him hoping to get him to deal with the situation is futile.
The experience of grief and adjustment to a loss like prostate cancer is much more difficult and takes much longer than we expect. This is particularly true of sudden unexpected losses that we have not been able to prepare for. Loss impacts us on all levels: emotionally, psychologically, physically, and spiritually.
We are never prepared for the turbulent emotions, spiritual questioning and personal isolation that are often associated with being diagnosed with a serious disease like prostate cancer. A person’s life has been altered forever and he has to adapt to a "new normal." Reconciling oneself to this new reality can be much more di cult than initially anticipated. It is common to experience depression or post traumatic stress disorder, which may include intense anger, sadness, anxiety and vulnerability.
We learn that the journey none of us would choose has been thrust upon us. Our only choice is how we respond—constructively or destructively. Loss brings a sense of isolation so it’s important to seek out others who have endured similar losses. This is the power of support groups. Through these groups we realize that we are not alone on the journey. There are traveling companions who are willing to encourage us and show us the way.
Prostate cancer support group participants benefit from the advice, tips and knowledge of other men who are committed to gaining the knowledge that’s needed to make smart choices for taking control of effectively managing their disease. The sense of sharing life’s lessons and helping others can be infectious. In the spirit of paying it forward, it can be gratifying for a guy who’s been helped by others at a support group to be able to turn around and help someone else down the line. That ability can only come from having accepted help previously. It is a logical, empowering and life giving process that speaks to the core of positive human interaction—a beautiful thing!
Originally published in PCRI Insights, August 2014, VOL.17, NO.3
Us TOO International Director of Marketing and Communications Chuck Strand develops strategy and content for prostate
cancer support services, educational resources and advocacy/ awareness initiatives for digital and printed materials including website content and user experience navigation, branding, email development and distribution, fundraising campaigns, events and social media.
Us TOO International is a nonprofit organization established in 1990 to serve the prostate cancer community by providing educational materials and resources that include 325 volunteer-led support groups across the U.S. and abroad. Us TOO was founded—and continues to be governed— by people directly affected by prostate cancer. The mission of the 501(c)3 is to be the leading prostate cancer organization helping men and their spouses/partners and their family members make informed decisions about prostate cancer detec- tion and treatment through support, education and advocacy.