Prostate Cancer Blog – Proton Therapy for Prostate Cancer

Former proton patient and member of the Brotherhood of the Balloon, Steve Snyder of Roanoke Rapids, NC was treated with proton therapy at MD Anderson in 2016. Today he’s feeling great and cycles 150-200 miles per week. “I’m as healthy as an ox!” Steve says. “I would like to thank the BOB for guiding me to the data I needed to support my battle with Blue Cross Blue Shield for proton therapy. Also, without reading stories of denials and appeals from former patients and BOB members, I may have given up; those stories gave me hope to fight on … Thank you also for publishing your newsletter. Without it, my health would not be what is it today.” In the photo below, Steve (4th in line wearing a blue jersey) is cycling from the mountains in western North Carolina to the coast (more than 500 miles!). Keep it up, Steve!

If you’re interested in learning more about proton therapy, visit the Brotherhood of the Balloon website. If you’ve already received proton therapy for prostate cancer, sign up to become a BOB member. It’s free!

I’m the “younger” nephew of this web site’s owner (Jim Tuggey), and manage the web site, administer the WordPress blog software, and generally take care of all things tech. Our web site just hit 10 years, and it’s been very rewarding to provide this public service for others who are faced with anything related to cancer and/or the prostate. As a consequence, I’ve learned a lot about prostate cancer!

So imagine my surprise (and the irony) when I recently learned of having a high PSA reading (6.5 ng/mL). At 53, I knew I had been putting off the big physical you should undertake when you turn 50 – so I finally got off my butt and went in for my checkup. Unfortunately, it had been five years since I had last had a physical, so I didn’t have a baseline PSA reading to compare. (Now in Denver, I called my doctor’s office in Atlanta who informed me my records were in long term storage).

One thing was clear: I had a peace of mind knowing that if I needed serious treatment, proton therapy was the likely avenue I would pursue.

Off to the Urologist I went, and I liked the doctor I found – Dr. Alexander Philpott of the Urology Center of Colorado (TUCC). What transpired next was fairly typical – an exam, and recommendation of a biopsy, and then the biopsy itself. My exam was normal, but the out of the blue 6.5 with no prior baseline led Dr. Philpott to his biopsy recommendation. From 12 samples, we learned that there was no signs of cancer. While I knew right away that my PSA of 6.5 was not a death sentence, I also know that a negative biopsy might not mean I’m free and clear. So I’ll have to pay much closer attention to this moving forward.

In my next post, I’d like to write about a book that Bob Marckini recommended to me: Prostate Cancer Breakthroughs 2014 – New Tests, New Treatments and Better Options. It has the potential to be a another game changer, just like Proton Therapy has been. The screening and pre-treatment choices are advancing at a rapid pace, and if you’re at the stage where you are facing undergoing a procedure, this book is a must read.

Hello to any man who has learned he has prostate cancer and now must decide what treatment option to select and where that treatment should be provided. The quick answer is PROTON TREATMENT at Loma Linda University Medical Center’s Proton Treatment Therapy Center (LLUMC). Call 1-800-776-8667.

In my case, my local urologist called in April of 2012 with the news that my prostate biopsy showed cancer. Gleason score was 3+4 for a total of 7. PSA was 9. (Current PSA is 0.37)

The decision for treatment was easy. My brother-in-law owner of this blog, Jim Tuggey, had gone to Loma Linda in 1999 for proton treatment of his prostate cancer and has been singing the praises of the treatment and the people ever since.

So I called the above number, sent the necessary medical records, flew to Southern California for a first meeting, came home and packed. My wife Judy and I drove to Loma Linda for my first treatment in mid-June of that year.

The nine weeks we spent at LLUMC was one of the best vacations we ever had and we have traveled a lot. The people at LLUMC are wonderful – they truly care. The treatment each day, five days a week, normally took little time, leaving the rest of the day for any activity of our choosing. The get-togethers on Tuesday, Wednesday and Thursday evenings were great times. The housing options were superb. And the other patients represent people who searched out several options of treatment, and did not simply accept the recommendation of the urologist back home and decided that proton treatment is the better option.

You are encouraged to do the same.

Floyd Jordan
fjjordan@gmail.com or 501-922-4311

MARCH 2014 is here and there is a lot said in the latest “Bob Tales”. (LINK HERE)

How lucky we are to have a smart, dedicated man in Bob Marckini who is always up to date on the status of protons. Bob has developed a complete program with the support of the Loma Linda team and we are all benefitting from his hard work.

Deb Hickey is right there keeping the show on the road and we winners in the Prostate Cure race are exceedingly happy with the results. Results count and given that, we already accept the impact of what has really been the impacts using “Protons”, vis a vis the crowd of “Naysayers”.

I have full faith in the use of Protons and our input broadens each time a new person reports “Proton” success. Here I am about to reach 85 and have no Prostate issues.

My personal burden has been lifted thanks to Jay Rolls, a close relation, who knows how to write English and manage much of the Technical side of “Charter” in Denver. He administers this site for me.

If you can call me between 8:30am and 5:30pm, I should be here to talk.

Looking for happy results!

Jim Tuggey, Colonel, USA Army retired

Here’s an interesting article about a prostate cancer patient and how he dealt with his treatment options within the UK. Link to article is HERE. Without any options to obtain proton treatment inside his own country, he turned to a treatment center on the European continent – over in Prague, Czech Republic.

Reprinted with permission by Gerard Bartasavich. Original article is HERE.

When Gerard “Bart” Bartasavich went for his annual physical, he mentioned to his doctor that he seemed to be urinating more than normal. The doctor performed a PSA test and discovered that Bart’s levels were high. He referred Bart to a urologist who performed a biopsy. When Bart didn’t receive a quick response, he assumed the biopsy results were good. But just to be sure, he called his doctor one day while at work.

The doctor informed Bart that he had prostate cancer, and that it was aggressive.

“The phone just dropped, my mouth dropped,” Bart recalled. “I was just totally stunned.”

It was April 2008. Bart was 56 years old.

With a Gleason score of 8.0 and a PSA of 5.62, Bart was advised by his urologists that removing his prostate was the best option, but that there was a chance he would be in diapers the rest of his life and wouldn’t be able to function sexually. A urologist at a Cleveland hospital even told Bart that doing his own research on prostate cancer was a bad idea.
“The doctor told me ‘don’t Google it,’” Bart said. “So, the first thing I did was Google it!”

Bart was familiar with proton therapy because a family friend had received it in California, and he began to discuss the possible treatment with some of his doctors. One doctor informed him that it was too expensive, and another warned him that he could bleed to death due to his history of ulcerated colitis. But this was contrary to what he learned from his friend and through online research.
Due to the aggressive nature of Bart’s prostate cancer, he was rejected by another proton therapy provider. As he continued to do research he discovered the IU Health Proton Therapy Center in Bloomington, Ind., which was reasonably close to his home in Ohio.

“It was brand new, and they took the worst cases,” Bart recalled. “They were concerned about the patient, and that was the turning point for me.”

Bart’s insurance provider initially denied his treatment, so the staff at the Proton Therapy Center resubmitted the claim and won his appeal for coverage.

Bart began undergoing treatment at the IU Health Proton Therapy Center in September 2008. “Initially, I was scared to death. I was actually petrified,” he recalled. The aggressive nature of his cancer and his history with ulcerated colitis were valid concerns for Bart.

While undergoing his treatment, he met with doctors once a week to discuss the progress. Due to his ulcerated colitis, Bart had a colonoscopy midway through the process to determine if the treatment had caused any damage.

“The doctor came skipping down the hall,” Bart remembers. “He said there were no side effects from the proton radiation.”

During his treatment, Bart continued to go about his life as normally as possible. The Proton Center helped him find an apartment in Bloomington. He and his wife, Vera, would go out to eat, go for walks and enjoy the beautiful state parks in the area. They also took trips to the Indianapolis Motor Speedway, Nashville, and French Lick. Bart refers to it as his “radiation vacation.”

He also enjoyed being able to listen to the music of his choice during his treatment sessions, settling on some Rod Stewart classics. “I used to turn that up as loud as I could, and didn’t even realize I was getting the treatment,” he remembers.

Bart was impressed by the personable nature of the staff at the center. “It wasn’t uncommon for a doctor or one of the staff to yell out, ‘Hi Bart’,” he said.  “When you were there, you felt like a friend versus a patient.”

After Bart’s successful treatment, he returned to Ohio to spend time pursuing his love of woodworking and classic Thunderbird cars. With a current PSA of 1.53, he still keeps in touch with the staff and fellow patients he met during his treatment. He is an advocate for proton therapy, and for the IU Health Proton Therapy Center.

“This center is something special,” Bart says. “I was totally impressed with the treatment I had.”

Isn’t it interesting the way information can be “spun” by those with an agenda, to make a point that fits their cause? One of the best examples of this is the political debates and subsequent analyses on network and cable television. They even have “spin rooms” where pundits from each side get together and take snippets of the debate (often out of context) to make their candidate look good and the other guy look bad.

Here’s another example of spinning the data: The number of physicians in the U.S. is 700,000. According to the U.S. Department of Health and Human Services, accidental deaths caused by physicians per year are 120,000, or 0.171 per physician. The number of gun owners in the U.S. is 80 million and, according to the FBI, the number of accidental gun deaths per year is 1,500. So, the number of accidental deaths per gun owner is 0.0000188. Therefore, statistically, doctors are approximately 9,000 times more dangerous than gun owners. I guess you can conclude–guns don’t kill people … doctors do.

Ridiculous? Absolutely. But, this is no less ridiculous than some of the claims, attacks, and distortions being directed at proton therapy.

Early this year a terribly flawed study from the University of North Carolina, looking backwards, using Medicare billing codes to identify what they thought were side effects, concluded that proton therapy for prostate cancer is no better than IMRT, and proton produces more rectal side effects. All the other prospective, scientific, peer-reviewed studies, which reached different conclusions, were ignored. Nevertheless, the media loved it and ran with it. Clearly there was another “agenda” at work here.

But, truth, justice, and the facts are on our side. This month we begin our “Mythbuster” series of articles on the ten myths about proton therapy. We will debunk these myths, one at a time, with facts and reputable, published studies.

Our group consists of more than half the men alive today who have had proton therapy for prostate cancer. We have members representing every proton center in the U.S. and three overseas. Our 2009 survey of BOB membership showed conclusively that prostate cancer cure rates were at least as good as the best alternatives and quality of life after treatment far superior by every measure. A subsequent, scientific survey of our membership was far more comprehensive. These results have been analyzed and are soon to be published. We will let the results and the facts speak for themselves.

Stay tuned, Bob Marckini

My brother-in-law finishes up at Loma Linda’s Proton Facility this month and tells me that the LLUMC staff at the Proton center and the overall staff at this wonderful facility have impressed him in every way, from knowledge to service for the patient.

In the meantime I have been reading a number of the available medical advice papers that lists Radiation Therapy, Hormone Therapy, Surgery, Cryoablation, and last “old Faithful” Watchful Waiting. The unfortunate facts are that these suggestions are not uncommon and once again, Proton radiation is not mentioned on these pamphlets.

In fact, the following quote seems to decide for the men who are diagnosed; that “surgery” is the answer!?

“Prostate cancer is the second leading cancer killer of American men, and 1 in 6 will be diagnosed with the disease during their lifetime. In 2012, more than 240,000 men will get the chilling diagnosis — and then be faced with the decision of whether or not to undergo surgery.”

My personal experience tells me to say “no” to surgery, a course of action that was suggested to me in 1999 by my Urologist in Texas. By pure luck I met a Doctor in Fort Worth, Texas who told me in specific terms – “Go to Loma Linda’s Proton Center, that’s where they kill cancer.”

Hard to find fault with a treatment that took my 15.6 PSA down to 0.1 in August 1999, where it has stayed to this date!

Next week (17th) I return to the Houston Cancer Center MDA, to review my status. I will be there until the 2oth and hope to return home with a bunch of Good news!

I do not wish to visit the radiation machine again, and seem to be slowly getting the hang of how to get better.

I can’t thank all of you who checked up on me and know that I’m better because you did. So here’s a picture of the IMRT machine used in Houston for the treatment that lasted just over five weeks (Weekends not used).

In the meantime, I have been in touch with over 30 men regarding their Proton progress and five others who asked me “What happens”? The reports say that the Proton is still being denied by some and while that is going on many men and some women are happily completing their treatment with protons for a variety of cancers.

I have talked to a lot of people while at MDA and I am amazed at the number I see every day while I am there. The program is well managed and when I go back I will see some friends who are being treated for almost every “cancer” imaginable.

My Prostate is fine, doesn’t even talk to me and seems happy with the treatment I received in 1999 at Loma Linda’s Proton Center. PSA stays at 0.1 at each annual physical in November each year.

So here’s the picture of the equipment in Houston, there is about ten minutes of preparation and then the IMRT radiation treatment lasts from 15 to 30 minutes. I had three Chemo treatments that lasted most of all day, three days and have been here in the Dallas/Fort Worth area since last May 2011.

Click photo to see full size

The first month is complete consisting of IMRT Radiation five days a week and three treatments with Chemo Therapy (once a week) that compliments the IMRT to bring the “Tongue Cancer” to a stop.

The schedule continues through the month of May and if all goes as forecasted I should be “Rid” of this pest by months’ end.

By the end of the third week of treatment I discovered that I could not keep up with an adequate diet to truly maintain my weight and health. The Radiation/ Chemo combination changed my ability to taste and enjoy food. I discovered you can’t live on “Milkshakes” and a product named “Ensure” that delivers a lot of calories but falls short of your total needs.

Thankfully and right on time, in walks the Representative from the Department of Clinical Nutrition and soon you find out the solution to your health needs. “Isosource,” a high calorie medical food, fills the bill and a “peg tube” (feeding tube) is required so they can “fill ‘er up”! At the MDA cancer center this is routine and I suggest you overcome your stubbornness, get it done and “get on with your life”!

Please realize that this is a “Temporary Solution”, it is not a permanent thing and will go away after you are properly fed.

SO my remaining schedule looks like: IMRT May 6
IMRT May 9, IMRT May 10, IMRT May 11, IMRT May 12, IMRT May 13,
IMRT May 16, IMRT May 17, IMRT May 18, IM RT May 19, IMRT May 20,
IMRT May 23, IMRT May 24, IMRT May 25.

These are the last treatments I will have and hope to have a ride home to the Dallas area arranged immediately upon completion.