Published by
Stanford Medicine

Cancer, Men's Health

Managing a prostate cancer diagnosis: From leader to follower, and back again

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s bonus column comes from patient advocate Jim Rieder.

Caring for others has always been part of my approach to life. I built my career in health care serving as the CEO of a statewide non-profit foundation, in addition to being the CEO of seven diverse types of hospitals. Naturally, I was intimately familiar with the steps necessary for a person to become an empowered patient. But when I was forced into the role of being the patient, the initial transformation was surprisingly more intense and unsettling than I had imagined it would be.

Managing prostate cancer is a battle. Recognize it as such. Invest the time and energy necessary to empower yourself with the knowledge you’ll need to make informed choices about your path of treatment

When a person is diagnosed with any type of cancer, the obvious objective is to get rid of it completely as quickly as possible. After being diagnosed with prostate cancer in 2002 and doing my due diligence, I ultimately decided that a radical prostatectomy was the best course of treatment for me. I had the surgery in 2003, and I’m very happy to report that I’ve been cancer-free ever since. However, it’s important to recognize that there’s not a one-size-fits-all solution for treating prostate cancer.

In response to prostate cancer diagnosis, it’s critical to take a step back, take a few deep breaths, and try to approach the situation calmly and logically. Don’t let anyone rush you. There’s ALWAYS time to evaluate the medical options and get a second opinion from another medical expert who ideally is not affiliated with the same practice as the physician who provided the initial diagnosis or treatment recommendations. Know that watchful waiting or active surveillance can be viable options. Every treatment has side effects, which typically include erectile dysfunction and/or incontinence. The skill of the physician and the amount of experience specific to the procedure being performed are very important in minimizing the presence and ongoing impact of these side effects.

Some guys pursue their treatment and quietly return to business as usual without ever talking about their prostate cancer or its side effects. While I respect the option of maintaining privacy, I encourage anyone who’s facing a diagnosis of prostate cancer to reach out for help from others who have already traveled the same path, and to reciprocate down the line by helping others who will be grappling with the involuntary transition into joining the prostate cancer community. Also recognize that prostate cancer affects spouses or partners, as well as family members. Their support is also very important.

Being my nature of wanting to help others, I’ve been very active with the James Cancer Hospital support group, an affiliated chapter of Us TOO International  in Columbus, Ohio. I know from experience how valuable a support group can be as the platform for peer interaction to learn from other prostate cancer survivors who’ve “been there and done that.” The camaraderie developed in the support groups often impacts local communities by raising awareness and money for prostate cancer through high-visibility activities such as beer tasting events, mustache and beard shaving events, swimming races, running races and walks.

Managing prostate cancer is a battle. Recognize it as such. Invest the time and energy necessary to empower yourself with the knowledge you’ll need to make informed choices about your path of treatment. Develop a strategy, find the best medical team, and fight back with the support of your fellow warriors.

Jim Rieder retired in 2001 after more than 40 years of executive hospital leadership. In addition to being a consumer reviewer for the Congressional Directed Medical Research Program for Prostate Cancer, he actively serves as a community leader with the Ohio State University James Cancer Hospital support group, an affiliated chapter of Us TOO International. He has been on the Us TOO International board of directors since 2010 and was elected chairman of the board in 2013. He’ll lead the Us TOO BoardWalkers team on September 14 at the 10th Annual SEA Blue Chicago Prostate Cancer Walk & Run to raise money to fund free prostate cancer services provided by Us TOO and Wellness Place.

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