My PSA doubled from 2.9 in 8 months to 5.8 in 2007. Family doctor thought I should see an Urologist. No symptoms just getting up a couple of times at night in the last year. Besides my father didn't have prostate cancer until age 71 (successfully treated with seeds to date). I figured I had 20 more years not to worry.
Well the Urologist performed a digital on my prostate said it felt normal but slightly enlarged. He decided to test my PSA again but it shouldn't be anything to worry about. My PSA came back at over 5.0 so he decided to schedule a biopsy. They did the ultrasound and cored 12 samples out of me. The anxiety of the procedure was worse than the actual biopsy. No sweat! They said the ultrasound looked just like any 53-year-old prostate and looked normal from that point. I left the office feeling a little sore but somewhat relieved.
They called my wife the next day and said I had cancer and to see the Urologist the next day. It was a tough day for me, needless to say, thinking I was home free for now. It appears that my diagnosis says I have 3 tumors (2 on one side the other one on the other side) at a score of Gleason 6 and T1C scale. I have some perineural invasion. Doctor said it is lucky we found it at the early stage (this is luck!) Of course as an Urologist and surgeon he wants to do a radical prostatectomy in the next few months. Whoa! This is a quality of life decision. This procedure is well documented on this site from others experiences. The urologist indicated for me this would have some incontinence (leakage) for a while, possible bowel function complications and 50-80% erectile dysfunction. No heavy lifting for a few months. This whole diaper, pads and loss of functions shook me. I have never been really sick or operated on in my life so this is new territory. He suggested this because of my age for a cure and longer life!
Well I have done quite a bit of research and talked to many who went through this. What a hurricane of information to digest! Radical prostatectomy is out, in my mind. Most appear to have varying degree of problems for years. Other men's stories, books and groups have helped me decide. It appears I have many options. I started to investigate "Cyberknife" but its still photons or x-rays and that has its issues. Seed Brachytherapy have complications. IMRT (Intensity Modulated Radiation Therapy) or IGRT (Image Guided Radiation Therapy) looks good, ADT (Androgen Deprivation Therapy) is out, and Cryotherapy or HIFU (high intensity focused ultrasound) is also out for me. Watchful waiting may eventually kill me at a younger age. Besides I have been a vegetarian (no meats and very little dairy) for over 13 years, don't smoke (quit years ago) and exercise daily. Plus I have been taking supplements like selenium, flaxseed oil, sawgrass palmetto and others to ward of cancer for years. Didn't seem to help in my case.
I checked other oncologists locally (MD Anderson- a Houston based network - has a branch here and they are number one for cancer treatment in the US) and interviewed with the Dattoli center in Sarasota Fl. Dr Dattoli is a pioneer in prostate cancer treatment including Brachytherapy, IMRT, and IGRT and has a world wide following with 1000's of successes. He took the time out to interview me on the phone for an hour and half. Impressive operation.
My research is leaning towards proton treatment based on effects, success, experience, quality of life and other reports including "Proton Therapy for Prostate Cancer: The Initial Loma Linda University Experience" clinical investigation. Every center I visited compared their standards to Loma Linda. Recent Newswire indicated that "Loma Linda has enjoyed more success than all other comparable competitors systems, with higher throughput, the most patients treated, and the most types of diseases treated with the most reliable and efficient device on the market." There must be something to it. You can read more stories about it at Proton Bob or see the procedures. Until recently you could only get this treatment in Loma Linda University in California or Boston John Hopkins. Proton therapy is now available in other centers in the US and around the world (including the new NCC in Korea). Investments of 130 million dollars to build a proton center are daunting though. This will change with the new proton lite operations (recent PRNEWS Wire) that will be built for less money and made available to more patients. There are many scheduled (11) to build around the US over the next few years. FDA and Medicare approve it and so does many insurance companies.
I will keep you posted on the progress. I am scheduled February 5, 2008 for my first consultation at Loma Linda. Treatment will start shortly thereafter. Also Good news my insurance has pre-approved the procedure. Take care and bless all of you during this heartrending future.
I was accepted during my consultation date on February 5th 2008. My body pod was created during this visit. I had a lot of anticipation on the balloon that would be inserted in my rectum during this process as well as drinking and holding 20 ounces of water. This is necessary to protect the colon and bladder during your radiation treatments. Well the anticipation was worse than the procedure of the balloon insertion. Actually I was quite comfortable laying in my pod with a blanket wrapped about me. This was actually a dress rehearsal for the real upcoming treatments. I started treatment February 25th; I could have started earlier but had to get some affairs in order. My insurance carrier preapproved the treatment while I applied at Loma Linda. Only out of pocket expenses were my deductible and housing while there.
I had a small amount of bladder urgency during treatment. I took Advil to handle this. I was able to walk 4 -5 miles a day and work out and swim at the center. I even went on a few trips one to Phoenix that was over 5 hours and was able to manage the side effects.
I can not praise the Loma Linda Medical University enough for the wonderful human and compassionate care I received there. It may sound odd but the Loma Linda experience is a highlight in my life. I do miss the comrade of the time spent at Loma Linda. I made great lifetime friends (and one was from Australia) and the forums and meetings that they encourage to participate in make it very unique.
I finished up 45 Proton radiation treatments May 5 2008. I can say it was a breeze and I have a normal healthy life. Since being home I am back to my normal schedule of work and activities. The urgency is gone and as a matter of fact night time urination is back to once a night or none. Everything works just fine. My PSA has since dropped from 5.3 to 1.4. I have another PSA test in March 2009. Most men in my group are reporting similar results.
The time away from home was just a small inconvenience to pay for what I see in side effects. I am so happy to still have a normal life. I had grave concerns for the treatments and the time away from home but my spouse and I managed it quite well. I have friends and relatives who had other treatments and they are still dealing with side effects years later. Not for me
As far as I am concerned Proton therapy is the treatment for prostate cancer.
Good luck to all in your journey and take care. I’ll keep you posted on my progress.
For more information on proton patient therapy here is a recent clinical/brief study Conformal proton beam radiation therapy for prostate cancer: concepts and clinical results completed at Loma Linda by Dr. Carl Rossi.
Well it’s been a year since my last and 45th proton radiation treatment and I’m feeling great. I continue to have a normal life with no side effects. I am very active in my work and exercise regularly.
I have no night time urination and everything else works just fine. And now I have a new PSA test result to report. It is now at 0.8. I am very happy.
I will get another PSA test in 6 months and will advice.
Proton therapy and life is good!
Here is quick update (12/16/2009) on my latest PSA last month. It came in at 0.8 which is no change from the last test. A quick call to Loma Linda and the staff indicated this was great news. They said this may be my PSA-nadir. You can read more about it here. For what I read A man is never cured of PCa. However a cure can be defined as being diseased free for 10 years. So if it stays at .8 I'm happy. I continue to have excellent health and enjoying life. Cheers!
