In 2001, a small group of Florence men found themselves in search of prostate cancer information. At the same time, they wanted to take what they learned and help other men in the community — now and in the future — in fighting the second-leading cause of cancer death among men. The small group began meeting in a conference room at Peace Harbor Hospital but soon outgrew that location and moved to the Presbyterian Church of the Siuslaw. A second meeting was added, known as the Lunch Bunch, in order to meet the needs and availability of more men and their families. As word of the program grew, it caught the attention of Us TOO International, which recognized Us Too Florence with the Edward C. Kaps Hope Award in 2011 for the group’s efforts in educating patients and their families about prostate cancer.
In addition to its twice-monthly meetings, Us TOO has began publishing a monthly feature in the Siuslaw News called “My Prostate Cancer Journey,” with each article featuring either the personal accounts of those who have experienced — or were in the midst of experiencing — their own cancer journey, or by providing information about prostate cancer in Us TOO founder Bob Horney’s “Behind the Headlines” articles.
Since April 2011, the program has a perfect monthly record, with articles and information made available in 20 different locations around Florence in large, white three-ring binders.
Us TOO’s goal with its “Journeys” and “Behind the Headlines” articles is to remove much of the mystery, fear — and in some cases stigma — of the disease and its treatment options. For anyone facing a prostate cancer diagnosis, they quickly discover there is are a wide range of opinions and perspectives about prostate cancer and possible treatment, from screening for the disease itself, to being diagnosed and how to treat it.
Do the harms out-weigh the benefits? Is the process to achieve a diagnosis really necessary? And are the potential long-term consequences worth the treatment?
To help answer those questions and the multitude of others that prostate cancer poses, Us TOO was established. Not just as a support network for those who are either dealing with — or who have survived — prostate cancer, but also to provide in-depth answers to questions in real time, and by true experts in the field of diagnosis and treatment. To that end, Us TOO has come to provide two exceptional opportunities each month for community members to meet and voice their questions and concerns to urologists Dr. Bryan Mehlhaff and Dr. Roger McKimmy. On the second Tuesday of each month from 5 to 7 p.m., Dr. Mehlhaff is in Florence; on the third Tuesday of the month from noon to 1 p.m., Dr. McKimmy is in Florence.
Both meetings are held at the Ichiban Restaurant on Highway 101.
In addition to those urologists, there are men who have experienced the journey of prostate cancer who are willing to share their experiences in a way that is real, honest and illuminating. It’s not always information that is easy to hear — but it is important to hear.
Meetings include urologists explaining what is on the horizon, what they see occurring with other patients, and how that relates to those in the group who are currently undergoing treatment as well as those who have yet to decide what — if any — treatment sounds like the best fit for them.
“Our goal is to provide accurate information so other men can decide what they want to do … get screened or not, choose a particular treatment or choose to avoid immediate treatment and utilize active surveillance,” said Horney, himself a prostate cancer survivor. “In the end, it is up to each man to take all the information he has gathered and make his choice. No one — urologists or prostate cancer survivors — can or will tell a man what he must do.”
For those who want more information but don’t feel comfortable in a room listening to prostate cancer patients, survivors and urologists talking about the disease, there are recorded videos from the Us TOO 2018 Pathways educational events in Seattle, Wash., Englewood, N.J., and Chicago, Ill., available at www.ustoo.org. There, hours of video information covering a wide spectrum of prostate cancer presented by medical experts is available to view on your own. (While on the Us TOO site, go to “Prostate Cancer” in the blue headline banner and, in the dropdown menu, click on “Educational Videos/Informed Decision Making.” The three educational events top the list with more informational videos following.)
“I think people are amazed at the topics covered,” said Horney, who explained that visitors to the website can go directly to a topic of interest by using the dropdown list, along with the time a topic appears in the video. By clicking on the time, visitors are taken directly to that presentation. “That is very helpful since the videos are three, four and even five hours long.”
In addition to the three videos available on the website, explore the other options listed, which cover a wide range of questions, concerns and personal experience — all in the effort to fulfill the Us TOO mission: “To raise awareness and provide educational resources and support services to those affected by prostate cancer to help them learn to fight this disease.”
“The power of Us TOO is in helping men — and those who love them — by transforming resignation into determination, and fear into hope,” Horney said in reference to the group’s mission statement.
Critical prostate cancer information is available by either attending an Us TOO Florence meeting or by visiting www.ustoo.org.
“The advantage of attending an Us TOO Florence meeting is the opportunity to ask your questions and leave with answers specific to you,” said Horney.