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Finding My Place as a Proton Therapy Advocate

April 11, 2019

For the two and a half years since my treatment for prostate cancer in 2016 I have taken it upon myself to be a proton therapy advocate, not from a clinical or medical viewpoint, but rather, through direct contact with the public, informing them of the possibilities of proton therapy. This has taken the form of writing two books and starting three websites. For the most part, I work in isolation, using my own resources, not part of a larger organization. I have given away more books than I have sold.

Last fall I attended the big ASTRO convention for radiologists, virtually all of whom use x-rays. My review called the proton therapy presence “a drop in the bucket.” I added a ribbon to my name tag that said “Proton Therapy Advocate.” It generated no interest.

So it was with great delight that I attended the National Association for Proton Therapy conference in Coral Gables, Florida, in late March at the spectacular newly-renovated Biltmore Hotel. (See my summary of the event.) Normally, such an event would be beyond my financial capability, but former proton therapy patients such as myself paid only $100 for the registration fee, rather than ten times that amount. Granted, the rooms were $300 a night, but a worthwhile value given the setting and amenities (and half of the posted rate of $600 a night). As a birthday present to my wife, I brought her along for a relaxing three days. We had time to visit Little Havana and share a few meals together, but mostly I was fully concentrated on the conference events.

I would like to say that I really flourished in this setting, filled with knowledgable people and crammed with programs about various aspects of proton therapy. Intellectually, I drank deeply of the information presented. I typed notes into my computer and took photos of more than 140 slides from presentations. Amazing things are happening, most of them good.

Initially, I was hoping for some kind of validation for the work I am doing. The few people to whom I gave copies of my books found them very interesting and pledged to buy copies for their clients. When I said I was a proton advocate, they responded affirmatively. At the same time, there was outlet to really present myself. At receptions, when people were gathering into groups of colleasgues, I didn’t feel like jumping in and saying “Hi, you don’t know me, but my name is Robert Ferré and I wrote two excellent books about proton therapy. Would you like to see them?” I thought of leaving books out on tables or other acts of guerrilla marketing, but it seemed petty amidst all of the big bucks vendors and presenters.

So I stayed in the background. In all, with the travel and lodging and meals I spent around $2,000. I could have taken a week-long cruise for that. It was a great splurge, pretending to be in proton therapy circles. As much as I enjoyed being there, I can’t afford to do that every year.

I went to the conference looking for recognition and affirmation, but then I had a real epiphany. This effort shouldn’t be about me any more than it is about them. It shouldn’t be about what they can do for me, or how many books I can sell. Rather, the question is what can we all do to help the cause of proton therapy. I can keep my books and websites up to date and make myself available to help others or speak to local support groups.

My best plan is to be just who I am, an independent voice who tells it like it is and a support person for all those who contact me for advice or information. No social media followers, no fancy newsletter, very basic web pages. When I shared with Deb Hickey, (who with her father Robert Marckini runs the Brotherhood of the Balloon, an organization of 10,000 members) that I wished Provision had adopted me as Loma Linda has adopted and financed them, she pointed out how overwhelmed they are most of the time, swamped with emails and the tasks of running the organization and putting out a newsletter. “Be careful what you ask for” was her wise advice.

I have come away more dedicated to my mission than before. I just need to get over myself. And be patient. The real star is proton therapy. The rest of us play a supporting role.

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Meanwhile, you may want to check out our two other related websites:
This is dedicated to Robert Ferre's books, Best Prostate Cancer Treatment: Proton Beam Therapy and Proton Therapy: Revolutinary Tretment for 80% of ALL Cancers . It has updates and additional information, photos, and more.
This site has an up-to-date list of proton therapy centers in operation in the United States, as well as a number planned or under construction.

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