ProtonPals

My Proton Therapy Prostate Cancer Process

Condensed Version

Proton therapy is cancer killing machine that targets cancer with precision to a millimeter while sparing nearby healthy tissues and causing very few, if any, side effects. It is important to remember that x-ray radiation with its side effects, which is what virtually everyone has heard of in the past, is not the same as proton radiation. Proton radiation is best for the prostate, Lung & thoracic, Pediatric cancers, Esophageal cancer, Head and neck, Brain, Central nervous system and spine, Gastrointestinal, Ocular, Sarcoma, Female genital tract, & Skull base. Great web-sites to check: http://www.mdanderson.org/care_centers/radiationonco/ptc/ & http://www.protonbob.com & http://protonpals.net/

Prostate Cancer Treatment: The goal is to eliminate cancer, save your sexuality and not have urinary problems (the two big treatment side effects) or for that matter any other side effects. I have seen figures like other types of radiation or surgery can cause sexual problems in 40-60% of men and urinary problems in 30-50%. All doctors you visit will typically tell you your treatment alternatives, but you will likely find no doctor who will mention what might be the magic bullet Proton Therapy as their network cannot perform proton radiation. I’ve been asking patients how they found out about this and they all have a strange story. One man was actually meeting with doctors at M. D. Anderson’s main facility and even they did not mention proton therapy. The Proton Therapy Center has M. D. Anderson’s name on it and M. D. Anderson doctors, but it is a mile from the main campus and built by private investors.

Proton therapy is NOT experimental. The first treatments were in 1954, however the first hospital based proton treatment center in the United States was built in 1990 at Loma Linda University Medical Center in California. Loma Linda has treated over 13,000 patients as of early 2009. Other facilities are in Jacksonville, near Boston, Indiana University and Sacramento. The reason there are so few treatment centers is the cost of the facility is prohibitive. The only proton therapy center in the Southwest is M. D. Anderson which is a brand new $125 million state-of-the-art facility which treated its first patient May 2006. If you must travel to a proton therapy facility for treatment this is the best facility to choose. I understand the retail cost of treatment is $144,000 but Medicare pays for the treatment.

My cancer treatment discovery drill in a nutshell: My annual physical found rise in my PSA – a biopsy by a urologist found cancer – talked to urologist about open nerve sparing open surgery ? met with nerve sparing robotic surgery doctor – talked to radiation seed or IMRT x-ray radiation doctor – a friend shared an article on Proton Radiation Therapy. The decision was easy.

Everyone here, like me, discover Proton Therapy by accident – a friend, an article, a lucky hit on the Internet, etc. Your doctor will not mention Proton Therapy, it’s bad for business. Note: Several patients with more advanced cancer are required to have hormone therapy (Lupron shots) in addition to proton therapy and the shots have significant side effects that last over 6 months.

My Proton Radiation Therapy Process at M. D. Anderson, Houston, Texas

Exploratory Visit 11/15/2007

The goal is to understand the process and to be accepted by the doctor as there are limited patients and there is a waiting list. They are also selective and typically will not take patients with a PSA over 20, Gleason scores over 8, people with cancer spread outside of the prostate or with pacemakers or hip replacements

Simulation Proton Therapy Day at M. D. Anderson 12/13/2007

I had X-rays and CT scans used to design plates used only for my prostate for precise radiation accuracy and to minimize side effects.

Treatment Began 1/2/2008 (38 treatments required)

Process: You are to drink lots of water to fill your bladder to protect it from radiation. You enter the building, put on a gown, & wait your turn. You enter the treatment room, lie on a table and have a probe inserted in your rectum to protect other body parts. You then have an x-ray line you up perfectly followed by protons shot in one hip than the other for about 30 seconds each side. That’s it for the day and the visit takes less than an hour and you feel nothing.

My treatment was done Monday through Friday. I returned to Dallas each weekend. Patients from further away stay for the entire time or fly home some weekends. M. D. Anderson provides a long list of places to stay.

Never have I seem such a friendly helpful professional group of folks in one place. Somehow they figured out how to have everything evolve around the patient and actually transmit that feeling to the patient. Everyone has given me business cards from the doctor, to nurses and other professionals all of which made it a point of saying they were there for me and to call them as they gave me their card (it wasn’t something you picked out of a display as you checked out). Everyone, including the doctor, also gave me their e-mail address. How often have you wanted to talk to your doctor or at least his assistant and found that virtually impossible without an appointment? And yes, the place even has free parking. I actually look forward to the treatment. All patients are upbeat so the atmosphere is totally positive.

On 2/22/2008 38 treatments were completed and I’m done. Haven’t felt any different or had any side effects.

After your last treatment you ring a gong at a little ceremony and go home. That’s it.

Follow-up Begins

After 3 months I returned to the Proton Radiation Center to give blood and meet with the doctor for a DRE. My PSA dropped to 1.3 which is good. At the 6 month point I mailed in blood using a kit given me by the Proton Radiation Center. My PSA was 1.2. The 9 month PSA was also 1.2. At 12 months the reading was 0.8, 18 months 0.5 and 24 month 0.4.  The normal follow –up is every 3 months for the first year, every 6 months for the next three years and than yearly for six years (total 10 years). Different labs don’t necessarily come up with the same results so M. D. Anderson wants accurate controlled results based on personal visits or mailed in blood. I’m confident proton therapy works.

This the medical professions best kept secret. Our favorite question to our doctor when he describes our treatment choices is “what would you do doctor if you were me”? This is the doctor’s favorite question as his answer is generally all choices work but he leans toward whatever he does. A better question is “please tell me about proton radiation”. If you are concerned about side effects and pain proton radiation is the only correct answer.

I’ve taken pictures of almost everything and everyone that I’ve described above. To view the pictures go to A Proton Therapy Slide Show and click slide show. For a much more detailed description of the above go to My Cancer Journey at the same web-site. BAN  3/18/2010

Join ProtonPals now to keep up your knowledge on cure results

3 Ways to Join

Go to protonpals.net and click “Sign-up”

Enter your name & contact info in the book in the patient gown room

Call Joe Landry at 832-335-0353 

UPDATED 3/19/2010 BanCapron