“SEA Stories” – About Prostate Cancer Support, Education & Advocacy
SEA Stories are real life accounts of personal experiences with prostate cancer. These stories highlight the importance of Support, Education and Advocacy within the prostate cancer community. We would like to show the full range of what people are experiencing, so what you read here might be sad, funny, confusing, beautiful, angry, or triumphant. Some deal specifically with our SEA Blue Prostate Cancer Walk & Run. We would like to showcase as many stories as possible and we will continue to add to this page.
Ken Willmarth Us TOO Support Group Leader - Modesto, CA
Ken is a valuable asset to Us TOO in his role as the Modesto, CA Support Group Leader. He works together with his local team to strengthen and extend the reach of Us TOO in his community. The integrity, warmth and compassion that he provides to his group each month supports the credibility of the organization.
CLICK HERE to read Ken’s thoughts on Support, Education, and Advocacy.
Myrna Porter Founder of the SEA Blue Chicago Prostate Cancer Walk & Run
11 years ago, Myrna Porter saw a need to bring the prostate cancer community together, increase awareness, and help raise funds to provide support and education for those affected by the disease. She helped fill that need as one of the founders of SEA Blue.
(Pictured: Myrna Porter with SEA Blue co-founder, Russ Gould)
Jerry Deans Longtime SEA Blue Participant, and Vice Chairman of the Us TOO Board of Directors
Jerry Deans is a longtime participant in SEA Blue and a highly valued member of the Us TOO team. As Vice Chairman of the Us TOO Board of Directors, Jerry provides guidance and leadership based, in large part, on his experience as a prostate cancer survivor. He has a long history of helping others through many different difficult situations. His outlook on life is truly inspirational and well worth your time to read.
CLICK HERE to read a personal experience from Jerry Deans.
(Pictured: Jerry Deans)
Debbie Trinco Captain of SEA Blue Team Trinco
Team Trinco is one of the longest running (and regularly one of the largest) teams at SEA Blue. Their arrival at the event site is always a busload of vim, vigor, blazing blue, and early morning enthusiasm. This SEA Story describes what makes the team tick.
Us TOO support groups offer a great forum where those who are affected by prostate cancer can exchange information and advice. You can often see the panic and helplessness of those newly diagnosed, and it has been extremely gratifying to have helped those in need become confident in their treatment decisions as they themselves often help others.
I have a favorite quote which goes like this: “People will probably forget what you said and probably not remember what you did, but they will never forget how you made them feel”. When we end our support group meetings, we all feel better than when we came. Doctors can perform surgery or other treatment but it is the members who help us all heal. - Don Trappler - Cape May, New Jersey
The Us TOO Florence Support Group has been the “gift that keeps on giving” us friendship, information and hope! Thank you! - Ray & Marilyn Barba – Florence, Oregon
I have been an Us TOO support group leader since 1994. In that time, I have seen many changes in both the diagnosis and treatment of prostate cancer. The Us TOO organization has allowed me to provide my support group members with the most current information available regarding prostate cancer. Using a combination of the Hot SHEET newsletters and the US TOO website, I keep our meeting topics fresh and interesting to the members. Us TOO gives me a sense of confidence that I am staying current in my knowledge of the constantly evolving ways to deal with this disease. As a caregiver and son of a prostate cancer survivor, I know that the information from Us TOO that I share with my patients and family members has been researched and reviewed before it goes out to the public. That allows me to maintain a reputation as a "trusted source" when others are looking for answers to the many questions prostate cancer survivors have to deal with. - Jeff Shea - Sheboygan, Wisconsin
Since 2012, the Us TOO prostate cancer support group in Rochester NY has conducted monthly patient education seminars on a wide variety of topics - one topic per month, facilitated by a local urologist, oncologist or subject matter expert. However, when I attended the Austin Us TOO Community Conversation online, I was truly impressed by a number of observations:
It was very easy for this senior citizen with limited computer skills to get logged into the conversation.
In just a couple of hours the program covered the importance of early detection, staging, imaging techniques, and risk vs. benefit of multiple treatment options including surgery and radiation; and even hot-button topics like proton beam radiation, stereotactic radiation, and the recently FDA approved HIFU.
Most impressive was that in just a couple of hours, and in the convenience of my home with my morning coffee at my side, this online conversation covered topics that takes our support group a full year of monthly meetings, and scheduling a dozen urologists or oncologists, to discuss.
I felt like I was actually attending the conference.
As a chapter leader with four years’ experience planning monthly meetings for those affected by prostate cancer in Rochester and the Finger Lakes region, I am sensitive to the growing need for this level of patient support and education. I only hope that Us TOO International can continue to conduct this Community Conversation program quarterly in 2017. It is my intention to approach our regional cancer centers and ask their management to consider a plan for making future Us TOO Community Conversations available for viewing in a conference room or auditorium and to then promote attendance among their patients and the larger community. - Patrick Fisher – Rochester, New York
At my advanced prostate cancer support group, I typically learn something new at each meeting. The combined knowledge of the members exceeds that of the typical urologist. The group keeps me apprised of the best therapies, drugs, and specialists for the various aspects of prostate cancer. - Walt D’Ardenne – Santa Cruz, California
Since the Santa Cruz California group became affiliated with Us TOO in December of 2000, our group has subscribed to their credo, “sharing is caring.” Us TOO has certainly been committed to the prostate cancer community and we will continue to do our best to honor our commitment to share information with others about prostate cancer because we care! Many thanks go out to all the wonderful folks at Us TOO who have helped so many throughout the years! - Howard Waage, Facilitator, Santa Cruz County Prostate Cancer Support Group
Us TOO has provided me, as a support group leader, with the same support that I aim to provide for our Mornington group. As well as the excellent resources and information, Us TOO has given me that sense of belonging, that I am not alone, that I am cared for. Us TOO (the people, of course) have been an inspiration to me on my prostate cancer and support group leader journey - my Australian accent not only accepted, but encouraged! This “positive impact” is only enhanced by the 15,573 kms "it" had to travel! - Roy and Helen Francis – Mornington Peninsula, Australia
Over the years I have become a multi-cancer fighter of prostate, kidney, malignant melanomas, multiple squamous cell and basal cell skin cancers. Soon after being diagnosed with prostate cancer in 1996, I went to my first US TOO prostate cancer fighter support group meeting when it met at Memorial Sloan Kettering Cancer Center. Over a short period of time, the group leader, fellow members, and expert guest speakers inspired me, gave me hope, gratitude, information and a life affirming positive spirit that motivated and moved me to be a proactive and informed prostate cancer fighter in advance of any treatment.
We now meet monthly at New York Presbyterian-Weill Cornell Medicine. At each meeting we have an expert guest speaker, clinician, researcher or scientist who presents cutting edge science and day-to- day pragmatic data. Being an US TOO New York prostate cancer fighter member and group co- leader has made an enormous impact on the quality and meaning of my life. Volunteering with prostate cancer fighters and their significant others has given me a voice and platform locally and regionally to educate, inform and to be as helpful as I possibly could be to the many hundreds of people over the years that I’ve had the privilege to encounter. - Jack David Marcus – New York City, New York
Every time you attend an Us TOO support group meeting and discuss prostate cancer with survivors and those being treated, you can learn something new. That is an opportunity to pass on ideas and suggestions and also impart information that you have learned to the newly diagnosed looking for help. - Harvey Orlov – Palatine, Illinois
Our group's theme is that to receive blessings, you need to be a blessing to others. We believe that giving freely of your time, resources and one's compassion/empathy is returned multi-fold. Iris, Ginya and I have received much more than we have given since starting our group in Sarasota, FL almost six years ago. We try to take the scary "you have prostate cancer" numbness and put it into prospective. Be a blessing. - Steve Gordon and Ginya Carnahan – Sarasota, Florida
My grandfather lost his battle 7 years ago. Being involved with the SEA Blue event not only allows us to keep Pa’s memory alive while helping to raise funds and awareness for the fight against prostate cancer, but also helps teach our children the importance of giving back and helping others. Us TOO is very dear to our hearts. - Meghan and Evey Dencs – McHenry, Illinois
A majority of the members are cancer survivors (including myself) and we mutually support one another as we cope with having cancer. I enjoy the camaraderie. I have known and been with some of these men and their wives for 16 years. It is like having an extended family. - Richard Nesbitt – Marshfield, Wisconsin
With the journeys of the other support group members and the urology doctors at our meetings, all our fears have been removed. - Gary and Joanna Sanders – Mapleton, Oregon
If you have a SEA Story you would like to share about your personal experience with prostate cancer or the support community, please contact Tim Mix, Communications Manager at firstname.lastname@example.org or 630-795-1002.
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