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John M lives in New York, USA. He was 60 when he was diagnosed on March 1, 2010. His initial PSA was 5.1 ng/ml, his Gleason Score was 7 and he was staged T1c. His choice of treatment was Proton Beam. Here is his story.

Like many others on this site, I had taken regular PSA tests beginning at age 50. My PSA gradually increased but in January 2010 the velocity had increased more than 0.75 ng/ml per year and I went for a biopsy - (I fired the first urologist because he did not want to administer a numbing agent to the prostate). I found a caring Dr with a wonderful staff(very necessary to expedite all the tests etc that would be needed) and had a sixteen core biopsy. The Gleason Score was a 7 (4+3) involving 10% of one core, another core at 3+3 and a third core 4+3 involving 20% of the total tissue. I asked for a second opinion on the pathology which was sent to Johns Hopkins in Baltimore MD confirming the results.

I interviewed specialists in surgery (my own urologist), seed implantation, radiologists, cryotherapy Brachytherapy. I seemed to be the perfect candidate for a variety of modalities. The task appeared daunting. A friend suggested I read Bob Marckini's book You Can Beat Prostate Cancer. Marckini promotes proton therapy because of its healing power and very few side effects The doctors I had talked to never mentioned proton beam therapy. After much research, I chose protons because the side effects were far less of an issue and the 5-10 year survival rate (from anecdotal evidence) favored protons. [Although my personal view is that there are likely advantages with proton beam over photon beam therapies, I think it is important to record that this is a contentious issues. There are no studies at this time (2010) that clearly demonstrate this and no scientific agreement. See Proton Beam] Protons have a tremendous advantage over photon radiation in that there is no exit dose thus reducing the chance of secondary cancers and its ability to treat the margins of the prostate where cancer cells may have exited the prostate capsule. There are six proton centers in the USA.

I started treatment in April 2010 at the University of Florida Proton Institute in Jacksonville, FL and Completed 39 treatments in June 2010. The staff was very professional and our stay in Jacksonville was better than expected. My exit PSA (benchmark) was 3.3 and I will have a PSA test every 3 months. I have had no side effects to note, except some minor fatigue and burning upon urination(briefly).

I am looking forward to a complete recovery.

 

UPDATED

September 2010

 

 

It's been three months since my treatment at the University of Florida Proton Therapy Institute. I continue to have no side effects and have been thankful relative to other friends who had chosen surgery and continue to face on-going side effects.

My PSA is taken every three months and I want to stress that the PSA should be drawn at the same lab as different assays are used from lab to lab. This was pointed out by my oncologist at UFPTI. [...and by me:-) see PSA 101] My three month PSA is 1.9 down from 3.3 in June and 5.1 at the time of my initial diagnosis.

I must admit to considerable PSA anxiety the past few weeks. When there are no side effects one always tends to wonder "Did the treatment really work?" I am happy to report that it is really working!!! I will report back in late December.

I pray for low PSA's to all who read my story.

 

UPDATED

January 2011

 

 

December 2010. I am now 6 months post-treatment from the University of Florida Proton Therapy Institute in Jacksonville, Florida. I continue to have no side effects. Everything that was working prior to treatment is still working great.

I am in contact with a number of men who were treated with me and they have had similar experiences.My PSA continues its decline from a pre-treatment high of 5.1 to its present 0.8. My oncologist did inform me that there could be spikes in the process and it will take two years to reach its nadir.

So far, so good in New York!!

 

UPDATED

April 2011

 

 

I am nine months post-treatment after proton therapy at the University of Florida Proton Therapy Institute.

I continue to do very well with no side effects. My most recent PSA was 0.80 and my PSA will be tracked quarterly for three years.

I continue to be active, coaching a variety of sports at my local high school and look forward to the day when I seldom think of prostate cancer. I am fortunate to have a loving wife who has been an awesome partner through some trying times. She even bought me a gift certificate for a first tattoo (A Florida Proton symbol)!! I never thought I would ever consider body art, but what ever makes the process easier is ok. My very best to all that read my story.

 

UPDATED

June 2011

 

 

It has been one year since my conclusion of treatment at the University of Florida Proton Therapy institute in Jacksonville, Florida. I continue to have no side effects and all parts are still working great. Proton Therapy has been as advertised, I could not be happier. I still have some PSA testing anxiety a week or so prior to the quarterly test , but I have no regrets.

I continue to talk to as many men as I can, urging them to at least consider the option if they are a candidate (based upon their Gleason Score). More than likely your Urologist (surgeon) will not suggest it or claim to know very much about it. It definitely is worth investigating. Make your own informed decision. Don't give in to scare tactics and rush to a judgement. Be your own best advocate!!

 

UPDATED

January 2012

 

I am currently 18 months post-treatment. My PSA continues its downward trend from its high of 5.1 in January of 2010 to 0.5 in Dec of 2011.

I continue to have no side effects , either with continence or sexual function. I am thankful that I did comprenensive research prior to choosing a modality to treat my cancer and did not succumb to the "gold standard". I regularly talk to men that have "buyers remorse" for years post-surgery. I am very happy with my decision. It is important, regardless of how things turn out, not to have regrets.

John's e-mail address is: norbo@verizon.net