Proton Beam Graduate

i have to concur with tony b    i also had the surgery which was no where near the brutal proceedure  i was explained it might be , im  2.5 weeks out and feel very good very very minimal urinary issues 1 pad a day and erections that work now  with the help of meds which will only improve in time, HOWEVER i also chose surgery  because of my age and the difinitive studies that have been done over  time , if i were 55 or older i would have done proton  therapy it is a wonderful option , maybe even for  younger men the 15 plus yr data just wasnt  enough for me  i personally think with the newer data for 20 plus yrs of sucess for  proton  it will be a major if not the the new gold standard for pca, with all the new proton facilties going up everywhere its no secret it works ,,,lets face it ,they dont duplicate failures ,,,,,,,,,,dirt

Richard and all,

I've decided to take that advice, and I have an initial consultation set for July 23rd, at the Midwest Proton facility in Bloomington, Indiana. Hopefully I'll be accepted as it looks like the best option for me, and about 6 hours drive from here. I don't see too much side effects from this treatment in the postings, although Murphy's Law will apply I'm sure. My sister related a sad story of her neighbor who had the Proton Beam for his lung cancer and the gold locator thing broke up and things went badly. Can't beat Murphy. I'm surprised Dr. Walsh's book has only a paragraph regarding Proton Beam. I wonder why?

But I feel good with the choice, it fits my age and situation, so I'll keep the board posted on my progress. Ought to be an adventure for the ol'timer.

charley/70/tn

Hi everyone

I was happy to discover that this thread is still alive! Best of luck to Richard and Charley as they pursue their radiation treatments (i.e., proton or a combination of IMRT x-ray and proton). Ken, I am happy to hear that things are going in the right direction for you after some initial set backs. There is no question that proton treatment is not for everyone and that surgery does have its merits. I point this out in my tread relating to my journey with PCa referenced in my footnote below.

Yes, Proton treatment is ramping up, but keep in mind that many think that proton therapy has its greatest merits with many cancers that are closer to the body surfaces, rather than the deep-seated prostate bed. The reason that new proton centers are cropping up all over this country is not only to treat PCa, but many other cancers. Proton therapy is considered a much safer form of radiation treatment, especially for children whose body structures are still too fragile in the development stage and are more susceptible to negative side effects from photon or IMRT x-ray radiation (which is not usually the case with adults). As I look back at the start of my treatment, I feel very fortunate to have been accepted for proton treatment (the hospital I was treated at only accepts less than 75 PCa annually for PCa treatment because they devote so much of the time of their facility to other cancers). I had to wait about three months from the time I made an appointment for a consultation with my radiation oncologist to the time I started treatment. The wait time may be even longer today, which can be very frustrating. It appears that Loma Linda still devotes a major portion of their proton treatment facilities to PCa patients. Good luck to all!

Dave

Hi Charley (Corynski)

There is a simple reason why prominent prostate cancer surgeons, such a Dr. Patrick Walsh of Johns Hopkins and Peter Scardino of Sloan-Kettering don't say much about Proton radiation treatment in their books. They are surgeons, they believe in performing the radical prostate surgery (not robotic) and are not going to promote any form of radiation. When I started to do extensive research on treatments for PCa soon after I was diagnosed, I had the same quandry as you. I even had difficulty finding enough definitive information about Proton treatment on the internet. I really had to dig for it. Thankfully, I came upon the YANA (You are not alone) website and found a mentor who had proton radiation treatment at the proton center that I selected for treatment based on his advice and experience. My mentor was so helpful to me in my decision making process, especially his recommendation that I should consult with a top medical oncologist who was very helpful to me in carefully evaluating my treatment choices. He also introduced me to Bob Marckini, who established his Brotherhood of the Balloon website (principally starting with alumni of the Loma Linda PCa treatment center) and who wrote the book entitled "You Can Beat Prostate Cancer (and you don't need surgery to do it)". If you have not read his book, you should do so. The book was issued after my treatment, but would have been very helpful to me in making my treatment decision if it had been available. Bob has done so much to make PCa patients aware of the merits of Proton treatment, depending on your stage of PCa. Best of luck to you.

Dave

http://www.protonbob.com/proton-treatment-homepage.asp

Hey Charley

I think you will find Bob Marckini's book helpful in cementing whatever treatment decision you have made or will make. True to form, most urologists recommend surgery (mine recommended robotic surgery with one of the best in the country (Ash Tewari at NY-Presbyterian Hospital). I consulted with him and decided against surgery at my age as I was told by a top medical oncologist that my chances of eradicating my cancer were about equal with any form of treatment. My primary care physician suggested that I consider radiation therapy (i.e., IMRT x-ray radiation) at Sloan-Kettering Cancer Center. I was happy that he didn't urgethat I have surgery! In any event, I told him that I was interested in radiation treatment, but only proton. He didn't seem to know much about it. Before treatment I sent him a letter telling him of my decision to opt for proton and why I made that decision. He seemed to give me a thumbs up on my next visit to him. You really have to educate even good doctors about the merits of proton radiation treatment for prostate cancer. I can't exactly blame the doctors because only a very small percentage of prostate cancer patients have been treated with proton at the very few available treatment centers until recently; new proton treatment centers have been opening and more are in the building or planning stages. Cheers!

Dave

Hey Charley

That's the way it always goes.  Hopefully you can pass on the extra copy to another PCa patient in the future who has to make the tough decision of selecting a treatment.  If the Florida Proton Center is giving out copies of Bob Marckini's book, they must have high regard for it.  Yes, it is a quick read and a must read for all of those who are diagnosed with PCa, no matter what treatment they opt for.  Bob is certainly objective in his book and goes through all of the pros and cons of each treatment.  You and I are about the same age and somewhat close as to the stage of PCa before treatment.  At our age it made no sense to me to subject myself to surgery, although many men our age would disagree.  The guys who opt for surgery seem to feel strongly that they want that cancerous prostate out of their body. Initially, I was not a fan of having radiation put into my body, but when I educated myself about proton radiation, I had no objection to this form of radiaiton which purports to be safer and hopefully will lessen the chances for negative side effects down the road.  Again, some would disagree and say that IMRT x-ray or photon radiation is just as safe.  The bottom line is deciding on a treatment that you feel is right for you and having it done by the best expert doctors you can find.  My radiation oncologist does seeds, x-ray and proton radiation--I could not get him to admit to any bias toward any of the three.  Since I joined this forum in late 2006, we have added some new members who have had or will have proton treatment.  Dutch is a member here who is about our age now, was treated at Loma Linda about 7 years ago and appears to be doing fine with a miniscule PSA.  Cheers!

Dave