Posted: Apr 04, 2017
Mr. Patrick Fisher is the co-founder and Chapter Leader of the Us TOO Rochester, New York support group.
Mr. Patrick Fisher: I happened upon Us TOO International through my own experience as a prostate cancer survivor. When I was diagnosed in 2010 I did not want to take part in a support group of any kind. I thought it would just be a room full of men not happy with their outcomes and did not want to be influenced by negativity about their choices. At that time, I guess I just wasn’t ready to hear other people’s opinions. I wanted to do my own research, make up my own mind, and move forward.
As naive as that might have been, it got me through. I decided on surgery. I had already lost five brothers and my father to different types of cancer. Then two of my surviving three sisters developed breast cancer. I felt that if surgery was an option towards a cure of my cancer, then I should pursue it.
So I did.
However, in the weeks and months following surgery I developed severe urinary incontinence. In 2012 I started to look for help. That was when I realized the error of being close-minded about support groups. In my search, I learned there weren’t any groups here in Rochester that specifically focused on patient education about prostate cancer, let alone side effects from treatment.
Patrick: The concern I realized is this: there are so many treatment options men need to know about in order to make an informed decision that providers simply do not have the time to do a thorough job of educating their patients. Too often, a surgeon may inform men about surgery and a radiation therapist may inform them about radiation, but few are fully informed about other options such as cryotherapy, high intensity focal ultrasound, 3T-multiparametric MRI, proton beam radiation, Cyberknife, etc.
Some providers refer men to Gilda’s Club, which has a national presence. The Rochester Gilda’s Club makes an ongoing effort to reach out to men with prostate cancer. However, they’re not funded specifically for those impacted by prostate cancer and subject matter experts do not typically facilitate the meetings they host. Without a facilitator present, there is no one available to correct any misinformation. This could result in some attendees leaving with wrong ideas about a particular diagnostic procedure or treatment option. In any case, at least Gilda’s Club encourages men to gather for sharing their experiences and being a support to one another.
There was another group at the time called Man-to-Man, sponsored by the American Cancer Society. In 2012, the American Cancer Society decided to no longer fund men’s support groups.
I had severe urinary incontinence after my surgery in 2010. While my surgeon was an exception to the rule and provided me with extensive information about the risks versus benefits of other treatment options and provided urinary incontinence treatment, traveling the path to full recuperation was still a long road for me.
By 2012, I had had multiple therapies for incontinence, but grew increasingly frustrated with the idea of having to use pads.
So, I started to seek additional support systems and did some research on the Internet. That was when I happened upon an Us TOO chapter located in Batavia, NY, not far from Rochester, only to discover it was no longer functioning. Then I discovered there were Us TOO chapters in Buffalo and New York City, but those were a hundred or more miles away. There was no Us TOO chapter in Rochester.
I then contacted the Us TOO headquarters and talked with Terri Likowski. Terri shared that Us TOO also hoped to form a Rochester chapter.
Patrick: Us TOO is a global nonprofit with more than two hundred chapters in the United States and other countries.
They provide access to support and education for those affected by prostate cancer. They have done a great job helping survivors and seeking sponsors (typically pharmaceutical companies) to fund publications about prostate cancer screening, imaging, diagnosis, treatment options and emerging research.
Initially, I just followed my instincts.
When I was diagnosed with severe urinary incontinence, I retired from the University of Rochester Medical Center where I was a community educator for HIV vaccine trials sponsored by the National Institutes of Health.
The position developed my skill for establishing community engagement. It also gave me first hand experience networking with local nonprofit organizations about other health issues.
In my career as a community advocate, I became a witness to the benefit of consumer education for patients.
Patrick: There was another Rochester survivor brought to my attention by Terri Likowski of Us TOO. I contacted him. The two of us seemed to have identical feelings about the need in the community. We concluded that all we could do was make an effort to see how the community responds to the idea.
I developed an ad and wrote a short article about the need for a local prostate cancer patient education effort. The ad identified a date and a location for our first meeting and invited like-minded people to attend.
Terri Likowski provided me with a contact person at a well-known pharmaceutical company that manufactures one of the medications used by prostate cancer survivors.
With two short phone calls, the drug company and a local urology office agreed to help pay expenses for the first call-to-action meeting. We ran the ad in a local Penny Saver. I believe the cost was $35.
One of our goals was to attract local urologists, oncologists and other survivors to attend. So, we decided not to have the meeting at a local church basement, but rather to find an appealing venue. I contacted a local golf course and country club to reserve a space. I arranged with their caterer for an evening meeting with a coffee bar, wine, and a vegetable and fruit tray.
The total cost was under $700. The pharmaceutical company covered all expenses, including the 35 invitations to urologists and oncologists.
My expectations were low. I thought we might get eight to ten people.
But much to our surprise, the room was packed. That first meeting made it clear: peer support for survivors and prostate cancer patient education were efforts that our community would indeed support.
More astonishingly, there were a few urologists in the room from different hospitals and urology centers that also wanted to support us and saw the need for such a group. That immediately gave us contacts within these various medical organizations.
We decided early-on those chapter meetings had to be more than a bitch session where men could complain. The focus had to be on patient education that increased awareness about treatment options and side effects. We also decided that our meetings had to be facilitated by urologists or subject matter experts.
And, so, Us TOO Rochester was formed at that first meeting in November 2012. We continue to conduct monthly meetings. In four years, the chapter grew from just an idea shared by two survivors to more than 350 members.
Meetings gave rise to more outreach, and more outreach resulted in more members. More members then gave rise to more local events. Members now help staff information tables at shopping malls and organize annual fundraisers. Fundraisers include car-shows, motorcycle rides, and the annual SEA Blue Ribbon Walk for Prostate Cancer similar to the walk conducted annually by Us TOO in Chicago.
Unfortunately, the other co-founder for Us TOO Rochester had to leave the chapter due to work demands. He served for only three meetings and I have been the chapter leader ever since.
Patrick: We have been meeting on the second Thursday evening of each month since 2012.
Most of our meetings have been at the Jewish Community Center for Greater Rochester. Their Senior Resource Program allows our Chapter to meet in their conference room for free. I schedule a subject matter expert to facilitate each meeting. The topic changes from month to month. Everyone leaves feeling more informed about that month’s topic than they did when they walked in.
Patrick: At first, I suggested topics and found local providers willing to conduct presentations. In recent months I formed a Working Group of survivors who help select topics. The Working Group now also helps organize local events.
Patrick: The Us TOO home office provides support to chapter leaders with monthly leader calls and a leader resource page on their website. They also provide forms and personnel to help ensure that chapter leaders have the guidance they need and that local printed materials correctly represent the Us TOO logo and brand.
When we conduct a fundraising event, checks are made payable and sent to Us TOO so donors can benefit from the 501(C) (3) charitable deduction.
A percentage of funds raised from our events support the Us TOO home office to help defray the cost of the free materials and resources provided to chapters. This agreement also makes it possible for our chapter to raise funds without the hassle of maintaining a private checking account.
For example, every year, Us TOO hosts the SEA Blue Prostate Cancer Walk & Run in Chicago. I followed their model and created a SEA Blue Ribbon Walk for Prostate Cancer in Rochester. We’re hosting our third walk this summer. At the first one, we had approximately 80 participants, a handful of sponsors, and raised about $10,000. Last year we had more than 400 participants, many more sponsors, and raised about $25,000. From the proceeds, we made a donation to the prostate cancer patient survivorship fund at the University of Rochester Wilmot Cancer Institute, a local cancer treatment facility and prostate cancer research center.
Now we’re looking for benevolent sponsors for next year and hope to grow even more.
Patrick: Don’t be afraid. Don’t be timid. Talk it up with peers. I bet if you pick six of your male friends, you’d find that at least one of them is also dealing with prostate cancer and may be willing to help.
When I started this chapter, I went to the breast cancer coalition here in Rochester, got an appointment with the Executive Director and asked how they got started. She was very eager to share ideas. I executed some of her suggestions. I also invited her to speak at our first meeting about the benefit of patient support groups for people with cancer.
My suggestion for those interested in starting a local chapter is to first contact the folks at Us TOO. Then, identify a venue, which could simply be a church basement or a local restaurant. It doesn’t have to be anything fancy.
Try contacting a local urologist to see if he or she will facilitate a discussion group at the first meeting. Consider placing a short, well-phrased line ad into your local Penny Saver.
Us TOO Rochester has accumulated over 45 urologists, oncologists and pelvic floor therapists who have facilitated our meetings, all at no cost. At each meeting, I provide a sign-up sheet requesting phone numbers and email addresses for the purpose of future communications related to prostate cancer. I create a simple flyer for each month’s meeting and then distribute it to all of the providers and people who have attended meetings.
Over time, our chapter has obtained the trust of these medical providers who now promote our meetings within their urology and oncology offices and often refer their patients to our chapter for additional support and information about treatment options.
But, reaching out to Us TOO is the way to get started. Have a conversation with Terri Likowski. Us TOO makes it easy. It doesn’t make any sense to reinvent the wheel. You might be starting a new group in your area, but this has been done time and time again in locations across the country and around the world. All you have to do is follow their model.
Patrick: Yes. Us TOO has a program called Community Conversations. They select four cities with Us TOO chapters to conduct a lengthy community conversation about topics concerning prostate cancer. Us TOO Rochester was selected as a location for a Community Conversation on Saturday, June 17, 2017. The University of Rochester Medical Center Urology Group and Wilmot Cancer Institute will host the event. Our venue is a local country club in Rochester.
We’re looking forward to this event: June is National Men’s Health Month.
Patrick: While I was diagnosed with severe urinary incontinence following my surgery, by being faithful to pelvic floor therapies and adhering to selfhelp recommendations, today I am no longer wearing any pads and have regained bladder control. The process of retraining my bladder (and my brain!) required 18 months and a lot of patience.
One day I stayed dry all day and have been pad-free ever since. I am proof that it is possible, and that over time even challenging recuperations can lead to success.
I have no regrets about choosing surgery.
I have learned there are many men who agree and that many others have no regret about choosing radiation, proton beam radiation, or other treatments like hormone therapies.