Q&A with UCSF Patient and Support Group Leader John Nidecker

John Nidecker has been a patient advocate at UCSF and prostate cancer support group leader for many years. We asked him to provide his thoughts on what a support group is like and why a person might attend.

Please tell us about your experience with support groups.

I've been leading prostate cancer support groups in the Bay Area for 11 1/2 years, affiliated with Alameda Hospital, Santa Rosa Memorial Hospital, Sutter Pacific Medical Foundation, and UCSF. I was fortunate to be mentored by retired psychologist and support group leader Lester Cohen, PhD, a long term prostate cancer survivor. 

What typically takes place at a support group, and what is the format of your meeting?

Our meetings are a combination of education and interaction. I usually start each meeting with a brief summary of articles and abstracts I've found that might be of interest to a broad range of patients. We then do a "check-in" to bring ongoing members up to date on any new developments in their situations and to allow extensive sharing of experience. Then we have new members describe their situation and discuss their questions and concerns. 

Our discussions are generally fairly technical, as opposed to emotional, but we sometimes shift the mood for members who are in need of emotional support. In such cases, we urge them to seek counseling and we inform them about available psychotherapy resources. 

Each new member receives a booklet which includes general information about prostate cancer and lists of resources for further study. It also includes a set of guidelines for group participation, such as who may attend, that we don't practice medicine in the group, the importance of confidentiality, and rules for respectful interaction. 

Who can attend?

Meetings are open to anyone whose life has been affected by prostate cancer, including spouses/partners, of any affiliation or orientation. We see a variety of ethnic and racial backgrounds, and we usually have one or more women attending - wives, partners, and an occasional daughter or other caregiver. 

What kind of person goes to these meetings? 

Members are typically proactive, motivated, and curious, and they are feeling that they need a broader perspective to add to their medical team interactions.

Educational backgrounds vary widely, but it's heartwarming to see men transcend widely differing life experiences and express real mutual understanding and caring. 

 What are some of the common concerns from new comers?

Newly diagnosed men (and their partners) are usually primarily concerned about the lethality of their prostate cancer. Their anxiety is often alleviated by seeing other men who have long term experience and are either "cured" or are managing their cancer well. There's a lot of concern about side effects of various treatments and about treatment strategy in general: what sequence is best for an individual case, based on individual preferences and risk factors, as well as the risk of recurrence. In particular, many men are interested in Active Surveillance and whether pursuing AS will put them at greater risk for treatment failure in the long run. It's important to note that we use the term "cure" very cautiously and urge men to never "turn their back" on prostate cancer; rather, they need to monitor their condition essentially as long as they're alive. 

Why does someone continue to attend long after their treatment? 

I see two main reasons. One is to stay abreast of what's happening in the field, especially for men who opt for Active Surveillance. And men who have had local treatment may have long term issues with side effects or disease recurrence and want to interact with the group about how to deal with these circumstances. The second reason would simply be the desire to help other men and to share their own knowledge and experience.  

 In what ways do men (or women) find the support group helpful?

I think that, more than anything else, newly diagnosed patients and their partners are reassured and their anxieties are eased by interacting with a group of long term survivors of this disease. They, along with ongoing members, also gain a better understanding of the disease in general, which in turn may help them to work more effectively with their medical team.

 Do you have a "most memorable" moment when the advice shared really connected with someone?

Yes, one case comes to mind, of a man who had extensive disease but was not pursuing treatment. Meeting with the group convinced him to get serious about working with his medical team to prevent further progression. 

In general, keeping in mind that the advice we share is strategic, not medical, there have actually been numerous occasions where a person was in denial, let's say, about the seriousness of their disease, and they responded to advice to be more proactive with their medical team. On the other hand, there have been men who appeared to have low risk disease and were advised to learn more and to get second opinions before they rushed into radical treatment instead of considering Active Surveillance.