Treated 2007 · Posted 2008 · Updated 2012 & 2015
"If you have not yet made your treatment decision as you read this, be sure to talk to as many guys as possible—not just those who selected proton therapy, but also those who selected other treatments. Above all else, make sure your treatment choice is your choice. You are the one who must live with the decision."
The patient support at Loma Linda University Cancer Center was top notch. The hospital's mission is "To Make Man Whole." Most guys thought that when they went out to Loma Linda they were going out there to be cured of cancer. That certainly was the case, but they, I included, found that they received so much more.
It has been a little over a year since my last treatment in May of 2007. My PSA was 0.5 as of March 2012; the last pre-treatment PSA was 4.7. I can honestly say that everything that worked on me prior to treatment still works.
I was informed prior to treatment that a year after treatment I would likely have some rectal bleeding. In fact, it was 1 year and 3 days that the bleeding began. Compared to reports of other patients, my bleeding lasted a bit longer than that of most other guys. Mine seemed to completely subside just after the 4-year mark while most other guys were done with it by two years. I should add that over the entire course of the bleeding period there was a consistent decrease in frequency of bleeding over time. My LLUCC physician said that as long as it decreases over time things should be OK. In fact, from the 2-year mark on there was a noticeable difference in frequency than before that point. At no time did the bleeding impose a major alteration on my lifestyle.
I'm as active now as I was before treatment. In July 2008 my wife and I rode our recumbent bikes from Buffalo to Albany, New York (400 miles) over an 8-day period. So anyone contemplating proton treatment, should plan on "pedal-to-the metal" if that's your speed before treatment. On our bucket list a San Diego to St Augustine bike trip. I've also taken up backpacking and taken on the 3rd section of the AT and hope to complete other sections before I check out.
One thing that was very important during my stay at Loma Linda was the Wednesday Night Meeting. Just seeing all those guys there the week of my arrival was very reassuring. Some of the meetings weren't particularly stimulating in the cognitive sense, but I made the commitment to attend each one unless providentially prevented, because I knew that there would likely be some guy present for the first time, who needed to see a bunch of guys completely at ease, confident of being in the right place.
I've had the opportunity to make presentations on my proton experience to several civic groups since I returned home and I encourage all proton patients to do the same, because you never know who may be present. I also am a regular at the local US Too group. I initially didn't attend upon returning home because I figured "I have my cure. Why bother?" But then I realized that by going I might have the opportunity to share my experience and give another guy a piece of information he might not otherwise have. I don't think anyone should tell another guy that proton beam therapy is the only way to go, as he must make his own decision. But being there to share one's proton experience is potentially a landmark experience for someone else.
One of the blessings of prostate cancer is that it made me face my mortality. I also became willing to take more time with folks facing a challenge, especially a health challenge. I tell all the guys who call me to ask about my experience that there is no time of day that I will not talk to anyone about the prostate cancer treatment decision, i.e., don't worry about what time it is before you call. In that same trend of thinking I've committed to making regular contributions to proton research at LLUCC. None of the contributions will get my name on a building, but it can be a positive contribution regardless of the amount. Each time I send a contribution in I make it in honor of someone who made a positive impact on me during the prostate experience, which is still going on. I realized that others had made contributions before my arrival so I could be blessed, so it was my turn to pay it forward.
Should anyone want to ask questions of me feel free to email me at the following address: ichoseproton at gmail dot com. When I respond I'll give you my phone number because I know that a phone call may convey the message better than email. You can also get all my contact information on a list provided by BOB as I've given Bob Marckini and Deb Hickey permission to share it with anyone who requests it.
My PSA has been below 1.00 for several years. I still tell everyone who calls me for information on my experience that my lifestyle has not changed from that before treatment – everything that worked before treatment still works.
As I review the whole experience, I would make the same treatment choice again if I were to rewind my life to the point where I was diagnosed with prostate cancer. One thing I would do differently is to request a second opinion on the biopsy before the samples ever left the doctors office for evaluation.
For those who are about to begin their proton treatment I encourage you to resist the temptation to return home on the weekends. Instead, invest yourself in the lives of the other guys who are there for treatment. Go do stuff with the guys – golf, all the touristy stuff, take the newbies around town to help orient them to the area. All of that will play a positive role in your healing process. Attend every support group/educational meeting offered. It may not be particularly stimulating every time you attend, but your presence will be an encouragement to the guy who just rolled in to town that day wondering if he made the right treatment choice.
Finally, if you have not yet made your treatment decision as you read this, be sure to talk to as many guys as possible. Not just those who selected proton therapy, but also those who selected other treatments. Above all else, make sure your treatment choice is your choice. You are the one who must live with the decision.
Since my last update I retired from college teaching. Life is filled with a lot of bike-riding, travel, golf, and fishing.
I am currently use my background as an exercise scientist and kinesiotherapist to receive clients for non-medical pain management (www.nonmedicalpainrelief.com). I am also working to bring a fitness program for people with Parkinson’s Disease to the Augusta, Georgia area, using non-contact boxing training; this is a method which has allowed many individuals to more successfully cope physically and cognitively.
I wish all who read this the very best throughout their prostate journey.