I was diagnosed in June of 2009 and was very angry, disgusted and depressed about the situation. I was told by my personal physician to get on the computer and check out all the options and he would send me to a specialist - a very good doctor. If the first one didn't satisfy me he would send me to another one, etc, until I was satisfied with the treatment offered. The urologist who diagnosed me said I had two options, surgery or radiation seeds. Neither appealed to me so I started my research.
Luckily I found the Proton Therapy. There are virtually no side effects during or after the treatment and it leaves you a whole man. [The question of efficacy and side effects for proton beam therapy vs. photon beam therapy (the more common EBRT - External Beam Radiation Therapy - is photon beam) is a hot topic and there is no general agreement on the statement made by Dean here. This is because there are no definitive comparative studies to support the statement] I would recommend this treatment to any man or anyone with any type of cancer. Check it out on PROTON BOB.
I spent a week in Jacksonville getting the measurements, MRI and CT scans needed for the proton therapy and am returning to start my treatments the 19th of October '09. There are different lengths of treatments according to how your cancer is. Mine is for 39 weeks, as of now. Your time in the therapy is about two minutes, give or take a few, but office time included it will be about two hours and then you are free to do anything you want for the rest of the day.
The University of Florida Proton Therapy has made housing available for you including everything, dishes, linen, furniture, TV and pc if you want it. They will give you brochures on the prices per month when you get there. Also, you can go to the YMCA for $50 a month while there and they recommend it.
I will update when I complete my therapy.
Best of Luck To All,
I finished my 39 treatments of Proton therapy December 15,2009 at Jacksonville, Florida.
While taking my treatments I did anything I wanted. I had no side effects to speak of. A little burning when urinating during treatments. The doctors put me on Aleve and cranberry capsules and that took care of that. I have no ED or incontinence. I feel better now after treatment than before. My energy level increased after about 2-3 weeks in therapy.
I had a PSA of 5.7 at one lab and 6.57 at another lab before treatment. I had a PSA test January 13th, about a month ago and my PSA was 3.5, according to my wife. I thought it was 2.5. The doctors told me that it will continue to fall as time goes by. I have to get PSA checked every three months this year and I have a doctors appointment in June and December of this year. I will update as I go along.
I highly recommend Proton therapy above all the other options I explored.
I just went to Jacksonville, Florida for a check up. My PSA has dropped to a 2.0 from a high of 6.57 at one lab and 5.8 at another.
The doctor there said it would continue to drop. My PSA started to drop after my treatments. It was 4.3, 3.3, 2.3 and now 2. My doctor said everything was going along normal whatever that is. I think he meant the dropping of my PSA and my prostate going back to a normal size.
I still take the cranberry capsules for burning when I urinate. That is getting better as time goes on. I do anything I want, as usual, since I started treatments. I have no other problems. I don't suffer from ED or incontinence and I don't have to wear pads or Depends.
I still highly recommend the Proton Therapy above all the treatments I researched and that was many. I can't understand why anyone would want to have any other treatment and suffer the rest of their life.
I will update as time goes along. I will be having a check up every six months in Jacksonville.
Best wishes to all and good luck with your decisions.
I just found that my PSA is now 2.3. It was a 2.0 the last time I was checked and a 2.3 before that. I am a little disappointed but was told by my doctors that it may spike after treatment before it reaches its lowest point.
Although disappointed I am still doing fine and feeling well with no side effects as of yet. I don't expect to have any problems and am looking forward to the next PSA test in December. I would still recommend Proton Therapy after constantly reading the side effects of the other treatments. I have no ED or incontinence but am still taking the cranberry capsules. As I have said, I probably will take them from now on knowing that they are good for the urinary tract among other things.
I will continue to research prostate cancer as long as I am capable and plan to live a long and fruitful life.
I had a PSA June 2010 and was very disgusted and depressed because it was a 2.3. I was told by the doctors that this could happen as my PSA was falling but wasn't prepared mentally for this. The last PSA in December 2010 was a 1.7. WHOOPEE!! Finally, a number below a 2.0. I will be very happy when I get below a 1.0 or less. I am looking forward to my next test June 1, 2011. I am hoping for a good report again.
I will try to update when I get this test regardless of what it is. I will try to prepare myself mentally for either way it turns out. I will never overcome the mental stress I have had. It is devastating to know something is inside you eating away at your body.
My friend who lives in Texas is in hospice now, dying from cancer. He didn't get the treatment he needed soon enough and is going to pass on any day now. He is 65 years old. Too young to die from cancer.
Oh, I have a cousin who got the HIFU treatment in the first of 2009 and he just found that he has another tumor in his prostate that has to be treated. Just a foot note to those considering HIFU. He said $25,000 out of his pocket wasted since insurance doesn't cover this type of treatment. He is depressed about his outcome.
May God bless and comfort all.
I'm sorry I haven't updated but I have been busy living a cancer-free life, for now anyway. I am still doing well and have no side effects from the Proton treatments. I am looking forward to a long life and cancer free, I hope. I don't think I will have to worry about prostate cancer anymore and hope the big C doesn't sneak up on me somewhere else. I am checked every six months by my personal physician and he faxes results to Florida Proton Center.
I will still be more than happy to talk to anyone seeking info about my treatments, which I still recommend.
My last PSA, as of December 1, 2012 was 1.4. It seems as if it will stay in this zone, which is ok.
Sorry I haven't updated like I was supposed to. No excuses, just a procrastinator. My PSA is now 0.65 as of June, 2014. As expected and explained to me by my doctors in Jacksonville, Florida, it will keep going down. I don't know where it will stop but am hoping it will be 0. I still have no side effects. My nightly bathroom visits are normal. None to one each night. It varies according to what I drink during the day and how much. Caffeine has the worst effects but I can't resist.
I still believe I chose the right treatment as I have explained before. I would still be available for discussion if there is anyone who wants to contact me. My email address remains the same.
Good luck and God bless to all.
My PSA; has constantly been falling with a few spikes now and then, which is normal according to my doctors in Jacksonville Proton Center.
The lowest was .65 in 2014. Now it is .75, which is normal according to the Proton Center. They told me it would fluctuate as it falls.
I am pleased and very happy that I just got a clean bill of health. I had a scope done and my bladder, kidneys and prostate are cancer free. Also, I had a colonoscopy done and it came back normal.
As I stated before, I still have no side effects from the Proton Beam therapy done in Jacksonville, Florida. I finished treatment the 15th of December 2009 and am doing fine. I would still recommend this treatment.
I've had only one person contact me since I posted on this site. He decided to do the Proton therapy at M D Anderson in Texas. He called me and we talked a long time. He had researched all treatments also and decided on Proton treatment. (good luck and best wishes Charles.)
My PSA goes from .68 to .71 back and forth. Maybe the testing but I am still happy with my results.
God bless and may the Lord be with all who go through the treatments chosen. I am still available for info if anyone wants to email me.
Dean's e-mail address is: buckmd AT yrless.net (replace "AT" with "@")