THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2017 SO THERE IS NO UPDATE.
A couple of months before I turned 60, I had a routine physical exam with blood tests at my family doctor's office. Afterward a nurse called me to tell me that my PSA was 8.7, and that the doctor wanted me to see a urologist. I didn't know what a PSA was or why a score of 8.7 would make me want to see a urologist. After researching the PSA test on the Internet I told them that I wanted to wait a few months and have the test again, thinking that there must be some other explanation than prostate cancer, and the problem would go away by itself. The doctor's response was that even if I did have prostate cancer, it is a slow growing disease and I probably wouldn't die from it in a couple of months, and I was scheduled for a re-test in December. Boy was that a mistake.
What I didn't find out until 6 months later was that my PSA reading starting rising five or six years ago. After being officially diagnosed with prostate cancer in February 2009, I pulled the results of my routine blood tests from the last few years. In 2002 my PSA was 1.7, and in 2004 it was 3.7. The 2004 lab report said that my PSA was "normal" because it was less than 4. What they didn't take into account was the increase from 1.7 to 3.7 in two years; a sure indicator that something may not be "normal" and it deserved to be watched carefully.
If my doctor had considered the increase in PSA from 2002 to 2004 as a serious indicator, I would have had annual tests, and we might have caught the cancer at a much earlier stage. I didn't find any evidence in my family doctor's records that they even did another PSA test until 2008. I share the blame, because I'm the type of person that doesn't go to the doctor's office unless I really feel really ill, or if I am required to have a physical as part of an insurance application, etc., so maybe I didn't get any blood work done at all. I don't remember.
The retest in late December showed that my PSA rose to 13.6 and my free PSA was only 10%. I immediately saw a urologist, and his DRE (Digital Rectal Examination) turned up a moderately enlarged prostate with a firm spot on one side. The subsequent biopsy showed cancer in only one of twelve cores taken, but that core was 61% cancer, and it was a Gleason 7 (4+3). The urologist said I was a stage T2a, but he said I was at intermediate risk because the Gleason was over 6, the PSA was over 10, and the PSA was rising pretty rapidly. I had a CT scan and bone scan that didn't show any indication of metastasis.
Oddly, my urologist didn't recommend a treatment plan; he told me to go home, do my own research, talk it over with my wife, and then let him know if I had any questions. So I did a lot of research on the Internet, learning about Gleason scores, PSA doubling time, Partin scores, cancer staging, intermediate risk vs. low risk and high risk, etc. Then I researched everything I could find about the various forms of treatment. It amazed me how much information there is about this disease on the Internet.
I thought I had read about all the treatment options, the effectiveness of each, and the scary side effects, when I stumbled onto proton radiation therapy. A Christian pastor I listen to on the radio, James McDonald from Harvest Bible Chapel in Chicago (his radio program is called "Walk in the Word"), mention that he had prostate cancer and that he was going to have proton therapy at Loma Linda in California. I hadn't seen anything about that yet, so I concentrated my research on finding out about proton therapy and then comparing it to other treatment options for intermediate risk prostate cancer. I learned that the effectiveness of most treatments for low and intermediate risk prostate cancer is about equal, but the side effects of proton therapy - both the side effects during treatments and the risk of long term or even permanent side effects after the treatment is finished - is much lower with proton therapy for intermediate risk patients. This was a huge relief to me, because before I came across proton therapy, I had resigned myself to getting IMRT radiation and hormone therapy. I say resigned myself, because my Google searches on hormone therapy turned up numerous websites where prostate cancer patients described the very unpleasant short term and sometimes severe long term side effects of Lupron. I still haven't found a single website where any proton patient has anything bad to say about the side effects of proton therapy.
I was happy to learn that one of the six places to get proton therapy in the United States is at the University of Florida Proton Therapy Institute in Jacksonville, just two hours from where I live and work. They sent me a package of information via FedEx, and they included Bob Marckini's book "You Can Beat Prostate Cancer." Since then I checked out websites like Brotherhood of the Ballon and YANA - You Are Not Alone. I also visited UFPTI and talked with several current patients. None of them were having anything but very mild side effects. Most of them were from out of town, and they acted like they were on vacation in sunny Florida.
Thanks to the people at UFPTI, my insurance company approved my request for proton therapy, and I am now waiting for my initial consult with the physicians at UFPTI. Hopefully I can begin treatment in late May or early June, and then I can get on with the rest of my life. I'm sure I've made the right decision to have proton therapy. I thank God that the cancer was found before it got any worse, and I'm sure that with God's help I will get through this just fine.
I completed 39 proton beam radiation treatments at UF Proton Therapy Institute in Jacksonville, Florida on August 12, 2009. All the people at UFPTI were really terrific -- the doctors, nurses, receptionists, security guards, administration, and especially Gary Barlow and his group of therapists. They made it a very pleasant experience. I have already recommended this facility to friends of mine, and I would highly recommend it to anyone who wants their prostate cancer cured and wants to live a normal life free of side effects during and after the treatment.
While many of the patients at UFPTI were either retired or taking a leave of absence from work and staying in Jacksonville, I continued to work a normal 8-5 work day during my treatments and never missed a day of work. The people who scheduled the treatment times were very cooperative and gave me evening treatments. I commuted 2 hours to Jacksonville after work and 2 hours home after the treatments; more than 9,000 miles of driving in 8 weeks. I met two other men while I was there who made the same journey. It was an easy drive because the entire distance was on Interstate highways, and we all thought it was worth the drive (more on this later).
Each week I met briefly with a nurse and one of the doctors so they could monitor how I was tolerating the radiation. They asked the same questions over and over again each week. They wanted to know if I had any pain or blood during urination or bowel movements; if I had any incontinence, hesitation, or urgency during urination; and how many times I got up at night to urinate. For the first 4 weeks, I didn't experience any of those problems. One doctor told me to wait a few weeks before bragging too much. He suggested that I start a regimen of Aleve and Cranberry capsules twice a day -- the Aleve was to reduce inflammation and swelling in the prostate, and the cranberry capsule would help with urinary difficulties. He was right. About the 5th week I started to feel very minor burning and some urgency to urinate. I told them that the pain was less than 1 on a scale of 1-10, that the urgency was not a problem issue, and I occasionally got up once during the night. I started taking the cranberry capsules, but didn't feel that the Aleve was necessary. By the 6th week, the symptoms increased slightly, especially by the end of the week's treatments. During each weekend I recovered completely.
I should have listened to the doctor's advice, however, because by the 7th week I was getting up twice at night to urinate. But that wasn't the real problem. Before each treatment started, the therapists had us drink a glass and a half (15 oz.) of water to fill up the bladder and move it out of the way of the proton beam. Sometimes that water didn't get all the way through my system before I started my two-hour journey home, and I had to stop at one of the rest stops along the interstate highway. The first rest stop was 22 miles from UFPTI, and I became a regular visitor to their facilities for the last two weeks of the treatments. On one night, I had to stop five times on the way home, each time with a very urgent need to urinate. After that night I started taking Aleve along with the cranberry capsules, and the problem was reduced drastically.
My PSA on the day after my last treatment was down to 5.7 (from 11.2 just prior to starting at UFPTI). The doctor told me that my minor symptoms would gradually disappear and that I could reduce the Aleve as needed. By the third week I stopped taking Aleve and at four weeks my symptoms were completely gone. I sleep through the night and have no other problems. My next PSA test will be in November, and I will meet with my radiation oncologist in 6 months.
I believe that my experience was helped a great deal by the support I received and the prayers offered up by my family and friends. And don't tell the Administrator of Patient Services at UFPTI, but patients prayed for each other while we were there too. God is good all the time!
I've been getting regular PSA tests since I completed my treatment using Proton Radiation at University of Florida Proton Therapy Institute in Jacksonville, Florida in 2009. (www.ufpti.org) My PSA dropped rapidly following the treatment and remains at 0.2 - 0.3. As I had hoped, I have no side effects from the Proton Radiation; everything that I learned in my research about Proton Radiation prior to my treatment has proven to be true. If you want to learn more about Proton Radiation, here's a great resource: www.protonbob.com
I have three friends who also had Prostate Cancer. One of them didn't tell anyone that he had the disease, so I didn't have an opportunity to recommend Proton Radiation. He had robotic surgery because his doctor told him that was the recommended treatment. Today, he has severe incontinence problems as a result of the surgery, and his wife tells me they are both miserable because of it. His surgeons have tried a variety of procedures to correct his problems, but nothing has worked. It appears he will be stuck with the problems for the rest of his life.
I did recommend Protons to the two other friends. One of them lives here in Florida and was treated at UFPTI with the same results that I had. The other guy lives in Cleveland and was treated with seeds at Cleveland Clinic. He said the treatment was painful at first, but the results have been good.
From time to time I get inquiries through this website from men who have been diagnosed with Prostate Cancer. I'm always happy to discuss my treatment with them, and I always recommend that they give Proton Radiation serious consideration. And I always tell them that if I had it to do over again, I would make the same choice.
The University of Florida Proton Therapy Institute recently reported that 99% of their patients treated for early and intermediate risk prostate cancer are living cancer free five years after treatment. My PSA five years after my Proton Radiation treatment for intermediate risk prostate cancer remains at 0.2, so that makes me part of the 99%. In addition, UFPTI reports that three quarters of their high risk patients are also living cancer free after five years. Here's the link: http://www.floridaproton.org/news/proton-therapy-prostate-cancer-results-long-term-patient-survival-and-excellent-quality-life
Beyond being cancer free, I am also free of any side effects from the treatment. I lead a normal, healthy lifestyle; just like I expected. And I couldn't be happier with the results. I have continued to proactively talk with men about prostate cancer and the many treatment options including Proton Radiation through a prostate cancer support group, and occasionally someone will read my story on yananow and contact me via email. I'm always happy to offer encouragement and whatever assistance I can.
Almost seven years after my proton radiation treatment my PSA is consistently either 0.1 or 0.2. So the cancer is gone. And the best part is, there have been no side effects of the treatment.
My boss' brother just lost his battle with prostate cancer. He let it go too long. (Please don't do that. Watchful waiting is a viable strategy for early stage cancer, but the emphasis should be on the watching, not the waiting. Watchful waiting doesn't mean ignoring your cancer and hoping it goes away. It won't go away, and if left untreated long enough, it will kill you.) Once he decided to get treatment, he chose surgery. He developed sepsis and that hospitalized him. The surgery didn't get all the cancer, and he didn't want to undergo chemotherapy to eradicate it. The cancer spread and took his life. What a shame.
You don't have to be afraid of Prostate cancer. It is easy for oncologists to kill (especially if they use Proton Radiation - I'm living proof) if it is caught at an early or intermediate stage. Stay positive, do some research before you choose a treatment. Don't just take your doctor's advice; it may not be the best thing for you. Check out the sources I listed in my earlier posts. Feel free to email me if you would like to know more about my treatment or Protons.
John's e-mail address is: smalljhsd AT embarqmail.com (replace "AT" with "@")
NOTE: John has not updated his story for more than 15 months, so you may not receive any response from him.