It was a shock and after much research and a second opinion at Mayo, Rochester, my decision was to go to Loma Linda University for Proton Beam Therapy. Our brother-in-law had done this 10 years ago. We had absolutely no support or information on this option. It was only by our insistence and research that WE came to this decision. We did have to appeal our insurance rejection (BCBS/MN) and then were accepted. LLUMC will work with you, cost-wise, if your insurance does not cover you.
It was a wonderful experience. Their faith based hospital is so much a part of the healing with much support and humor. We were fortunate to be able to take the time -three months- to accomplish this treatment. We met so many great people from all over the USA and other countries - 163 men being treated there for prostate cancer every day. They also treat brain cancer and early stage breast cancer. Feeling good and having no side effects was a great plus. We were able to enjoy our days with golf, walking, exploring the area or sitting by the pool with a book. Wonderful and my first PSA four months after treatment went from 4.92 to 1.79.
Now our concern is our older son who is 39 just had PSA/DRE done and has come back at 3.18. We heard through the Mayo doctor that a first PSA over 1.0 is cancer but cannot now find any information on his statement to us and need to find out more about catching this earlier than waiting for PSA of 4.0 and a positive DRE (Digital Rectal Examination). [To the best of my knowledge there is absolutely nothing to support the statement that a PSA of over 1.0 is cancer. PSA is NOT cancer specific and even at the current ' trip-wire' of 4.0 ng/ml more than two thirds of men will NOT be diagnosed with prostate cancer - see PSA 101 for the basics on this much misunderstood test.]
We want him to be proactive but not be panicked about it. How many young, working people with three little children can take three months off work and family and accomplish the Proton Therapy. With that thought there were younger men there working from their computers and their families just had to stay home. The thought of surgery at such a young age does not sit well with us. Everyone should consider the proton option but also understand it is a personal decision. There are a few more sites now for protons plus Mayo is putting in two, Rochester and Scottsdale. Loma Linda may be the only one with such wonderful full circle support. [From all accounts the Jacksonville, Florida Proton Beam Therapy center provides a very pleasant environment and may have modeled themselves on the excellent facilities at Loma Linda.]
I am still very pleased with my treatment choice. I have had no residual side effects to this point and my PSA number is going down after 2 checks - 0.71 at lst reading. It is 1 year since completion of my treatment.
My PSA continues to go down 1-1/2 years after completion of Proton Beam Therapy. I am still very happy with my decision for this treatment out of Loma Linda, CA. Check this option out before you make a decision. There are minimal if any side effects.
I am pleased with my decision for Proton Beam Therapy 2-1/2 yrs. ago. My PSA numbers continue to go down with each 6 month check with no side effects to this point.
I am still so pleased with our decision to do proton beam therapy. My current PSA is 0.34 and still go in every 6 months to check this number. There are no current side effects.
I am living a full and healthy life and very pleased to have chosen proton beam therapy. It will soon be 5 years.
Almost six years out, I am healthy, happy and active at 68 years old. I am on a once a year PSA check now with a 0.28 reading. Proton beam therapy is an excellent choice and there are many now choices around the country for this option. This option is now treating many other cancers. It does much less collateral damage than traditional radiation plus side effects have been nil for me. You are welcome to contact me to discuss this option.
I am doing great and continue to be an advocate for proton beam therapy, specifically Loma Linda. I will soon be a 7 year survivor and am so very grateful and continue an active life at 69.
Brian's e-mail address is: robinerickson824 AT gmail.com (replace "AT" with "@")