Moving on from prostate cancer

Ben Smith (l) chats with a proton therapy staff member in August 2006 as he prepares to be the first patient at UF Health Proton Therapy Institute.

By Carol Estocko

After Ben Smith was “fired” by his urologist 10 years ago for declining to undergo a radical prostatectomy to treat his prostate cancer, Smith fired up his computer and got to work.

“I started doing Internet research and looking at every available therapy at the time, even cryotherapy,” the 62-year-old Cocoa Beach, Florida, resident says. “All of the treatments had pretty good e ffi cacy. But then, they would talk all about the possible side e ff ects like impotence and incontinence — except for proton beam therapy.”

At the time, there were only a handful of clinical centers o ff ering proton therapy in the United States, including ones in Boston, Massachusetts, and Loma Linda, California. “I did a little more homework and found that the University of Florida was actually building one in Jacksonville, which is two hours from my home,” says Smith. He reached out to the sta ff of the soon-to-open University of Florida Proton Therapy Institute (UFPTI) and said he wanted to be the first patient.

“I waited for it to open,” says Smith, who received his first proton beam treatment at UFPTI on August 14, 2006.

“I was the first person in that machine when they turned it on,” he recalls. “I had 39 treatments, and the equipment worked every time. I might have been delayed while they tweaked something, but I never had a treatment get cancelled. This is complicated machinery — a particle accelerator, magnets. It’s crazy how huge, powerful and complex these systems are. And they got it up and running 39 days in a row.”

Smith, a retired aerospace engineer, thinks that many doctors still view proton therapy as an experimental procedure — if they have even heard about it at all.

“I think one has to be one’s own advocate,” he says. “I don’t think doctors want to harm you. But the urologist wants to operate. The radiation oncologist wants to radiate. Another person wants to do seed implants (brachytherapy). They want to do what they know. And a lot of people go with whatever the doctor says.”

Smith and his wife Lisa are in the process of restoring a 36-foot sailboat, which they plan to live on for the foreseeable future. They will travel, then determine where they want to settle down. “We are enjoying our lives,” he says.

“For me, proton beam was a treatment I was privileged and blessed to have, but it’s just something that I did, and I’m glad I did it. If I see an article on it, I’ll read it. But it’s not something that I need to make a major part of my life.”

This article originally appeared March 20, 2015, in Proton Therapy Today. Used with permission.

About This Newsletter

The Precision Newsletter is an electronic-only publication that is distributed by email. Each issue is sent monthly to patients, alumni patients and friends of the University of Florida Health Proton Therapy Institute. As the official newsletter of the Institute, the content is compiled and prepared by our communications representative and approved by the editor Stuart Klein, executive director of UF Health Proton Therapy Institute. Special bulletin newsletters may occasionally be prepared when timely topics and new developments in proton therapy occur.  We will make every effort to remove your name from the list. If you would like to send a Letter to the Editor, please click here.

 

Keep In Touch

It is easy to stay in touch with us online at floridaproton.org . Look at the top right corner of the homepage for Facebook , Twitter and YouTube icons, click and join us in the social media conversation. Also on the right side of the homepage there is a button for VTOC Patient Portal . Click here to open your secure account, view your records, complete clinical trial questionnaires and communicate with your nurse case manager.

 

Knowing how you are feeling during and after treatment is essential to providing you the best care possible and contributes to the care of future patients.