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.
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.
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!!
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.
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!!
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.
I am 21 months post-treatment at Florida Proton. I continue to be an advocate of proton radiation and have no side effects of significance to report. Other than fairly frequent urination(every two hours during the day and once at night) everything else is good.
My most recent PSA in late March of 2012 was 0.6 and I look forward to the time at three years when my PSA tests are done yearly.
I am two years post-treatment for Gleason 7 PCA. My most recent PSA taken three days ago was 0.5. I continue to have no side effects to speak of and am very thankful for my treatment choice of Proton Therapy.
I am also thankful that when I was diagnosed in Feb 2010, there was not a raging controversy about PSA testing. Maybe I would have chosen not to be tested. Of the approximately 240,000 diagnosed prostate cancer cases, 200,000 are gleason 6 (less aggressive), but what about the 40,000 or so gleason 7-10? Without testing and biopsy the nature of my pca would not have been known until it was too late.
I realize that this can be a decades long struggle but the sooner the beast is identified, the sooner the appropriate action can be taken or not taken based upon all the information. Prostate cancer is not over-diagnosed, it tends to be over-treated. I encourage all who read my story to make educated decisions.
Wow, it's hard to believe more than two years have passed since I had to sift through so much information to make an informed decision to treat my prostate cancer. I could not be happier with my choice. I have had no side effects and my PSA has been under one for the last 18 months(presently 0.5). I continue to be a strong advocate for this treatment.
Proton Therapy has been everything I hoped it would be. I read a number of stories representing various modalities on YANA prior to choosing Proton Therapy in 2010. The men that chose Proton generally were more satisfied than those that chose surgery, other forms of radiation, cryo, Hifu, etc. I am now one of those men. I have no side effects and my PSA has been stable and under 1.0 (presently 0.5) for the past two years. Happy New Year 2013 and low PSA's to all.
I am happy to report that nothing has changed, my PSA remains at 0.5 for the last year and I continue to have no side effects. Proton therapy has been everything that I had hoped it would be. If you read my story and updates please feel free to contact me.
Three years have passed quickly!! I have been tested every three months since completing treatment at Florida Proton in June 2010. I have been very pleased with the treatment and my steadily decreasing PSA, which hit a new low at 0.4 . I feel great and have had no side effects. I will report back in 6 months with my next test results Be well.
I am pleased to say that not much has changed. After PSA tested every three months, I am now being tested at a six month interval. I was told by my radiation oncologist at Florida Proton that a stable PSA under 1.0, preferably less than 0.5 would help lead to a long term cure. So far, thanks to Proton Radiation I am on track. Best regards to all that read my on-going updates.
My story continues to be positive. I am four years post-treatment and other than frequent urination and some radiation cystitis (checked out by my urologist by a scope) the entire Proton Therapy experience has been excellent. My PSA has been 0.4 for two years and I guess that is the main goal for treatment. My radiation oncologist at Florida Proton says one is "cancer free" at five years and "cured" at seven years, so I am getting closer to that goal with minor side effects. I will check back in December 2014.
At the end of this Month (Jan 2015) it will be 5 years since my diagnosis. My oncologist tells me that one is cancer free at five years and cured at seven years. I am thankful that I chose Proton Beam as my treatment of choice. I was reminded recently in the Brotherhood of the Balloon newsletter (BOB) that Proton Therapy is the only treatment for PCA that has a fan club. It has more than 7,000 members!!! Happy New Year to all that read my updates!!
After much research, I chose Proton Therapy more than five years ago. I have not been disappointed. My most recent PSA(0.4) continues a trend that started three years ago. I continue to have no side effects and lead a full retired life. I am glad that I did not panic when first diagnosed, but rather took time and made an informed decision. Regardless of how things work out, it is important not to have regrets. My next PSA is not for another year, as I am now on a different testing schedule. Low PSA's to all who follow my story!!!
It is a good thing that I have nothing new to report after completing treatment for prostate cancer with Proton Therapy. After six years I continue to have no side effects(urinary or sexual) and my PSA is still 0.4. We have a lot to be thankful for. Any questions please feel free to contact me.
I am very pleased to say there have been no changes in the past year. I continue to experience no side effects and be a strong supporter of Proton Therapy for Prostate Cancer.
John's e-mail address is: norbo1949 AT gmail.com (replace "AT" with "@")