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Proton Beam Graduate

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Prostate Cancer
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Dirtmover
Regular Member
Joined : Apr 2008
Posts : 158
Posted 6/17/2008 3:11 PM (GMT -8)
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

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smilingoldcoot
Regular Member
Joined : Jan 2008
Posts : 338
Posted 6/17/2008 4:00 PM (GMT -8)

corynski & anyone interested

I am currently at Jacksonville.  If you are considering Proton you need to get your info in and start the process as the waiting time is getting longer.  You can always change you mind later. 

I am kinda an odd duck.  I am on Hormone Therapy (Lupron & Casodex), My first half of treatments are photon (IMRT) and my last half will be Proton.  They are and will be radiating not only the prostate but the lymph node they suspect may have cancer. Most Proton patients do not have hormone therapy or IMRT.  The center will decide that based on your test results.  Also there is a new trial with some new patients only getting 29 treatments (higher dosage) but the requirements are what I have heard very strict.

I do not urinate any more than before starting treatment as I had BPH and it was already somewhat of a problem. No incontinence ever and ED was already a problem with BPH and high blood pressure.  I already had a problem with diarria so that can't all be blamed on radiation.  Hot flashes are from the Hormone therapy and not the Proton. 

If one can afford the treatment (Insurance and travel expenses) I would sure seriously consider it.

If I can answer any questions just ask.

http://www.proton-therapy.org/ list of proton centers and some information and links to each.

RIchard yeah tongue yeah

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corynski
Regular Member
Joined : Apr 2008
Posts : 63
Posted 6/18/2008 5:40 PM (GMT -8)
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
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smilingoldcoot
Regular Member
Joined : Jan 2008
Posts : 338
Posted 6/19/2008 7:21 PM (GMT -8)

Proton facilities that I have read about being in the works:

Hampton, VA

Boca Raton, FL

Grosse Point, MI

Oklahoma City, OK

Chicago, IL

Philadelphia, PA

Seattle, WA

It takes several years from planning to treating patients.

The fact that so much money is being put into these very costly facilities indicates to me the view of those in the know.

I am only in my early stages of radiation treatment so I have no first hand information except my fellow patients here at UFPTI and those who have completed treatment elsewhere during the past 15 years or so and share their stories on forums such as this.

Also go to www.yahoo.com/protoninfo for a proton forum.

Richard yeah tongue yeah

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pcdave
Regular Member
Joined : Oct 2006
Posts : 444
Posted 6/19/2008 8:22 PM (GMT -8)
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

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corynski
Regular Member
Joined : Apr 2008
Posts : 63
Posted 6/20/2008 3:24 AM (GMT -8)
Greetings All

The wait is about the same at MPRI. From my initial call, it is 5 weeks to consultation, and then she said about 6-9 weeks until start of treatment. Initial consultation is one day, then in about a month, she said I'd need to come up for 3 days for the workup. That's about 13 weeks total wait before the beginning of treatments, so for me it looks like around early Oct, and running thru early Dec.

I was ready for a Da Vinci surgury before I stumbled upon Proton Beam, mostly from personal accounts in the forums. Surprisingly, in his book 'Surviving Prostate Cancer', Dr. Patrick Walsh hardly mentions Proton Beam. Rather, he credits the radiation writeup to Danny Song and Theodore DeWeese of Johns Hopkins, who mention it briefly without suggesting that side effects are reportedly much less with the Proton treatment. It seems PB should have gotten a more positive writeup.
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pcdave
Regular Member
Joined : Oct 2006
Posts : 444
Posted 6/20/2008 6:28 AM (GMT -8)
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
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corynski
Regular Member
Joined : Apr 2008
Posts : 63
Posted 6/20/2008 8:41 AM (GMT -8)
Thanks Dave

I'll get that book and read it. I'm curious what my urologist will say regarding my choice when I see him Thursday. I would hope he will be supportive. He wasn't suggesting one over another when I saw him last.

I appreciate your help.

charley
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pcdave
Regular Member
Joined : Oct 2006
Posts : 444
Posted 6/20/2008 9:17 AM (GMT -8)
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
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corynski
Regular Member
Joined : Apr 2008
Posts : 63
Posted 6/21/2008 8:38 AM (GMT -8)
Dave

Outrageous, right after I ordered Bob Marckini's book from Amazon, one arrived in the mail from the Florida Proton Institute. I had called for an information package and it was included. Good thinking on their part.

I read the book in the last 24 hours. It's an easy read and an excellent book, as it covers about everything you might want to know to begin a search for a prostate cancer treatment. He favors the Proton Beam, mainly after systematically eliminating all the contenders. It really boils down to the quality of life you want after the treatment.

It's hard to imagine that Proton Beam treatments will not become the standard of excellence in the future. Medicare and the insurance companies are behind the demand, and they will insure that new treatment facilities will eventually be standard in every community. And it's not just prostate cancer, but brain cancers and breast cancers and many exotic cancers that many are cursed with, especially infants and young who are currently untreatable.

charley/70/tn
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pcdave
Regular Member
Joined : Oct 2006
Posts : 444
Posted 6/21/2008 10:31 AM (GMT -8)
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

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corynski
Regular Member
Joined : Apr 2008
Posts : 63
Posted 6/21/2008 1:38 PM (GMT -8)
Dave

Yes, my experience has been similar. My first thought was surgery, to be rid of it, but I quickly learned it's not that simple. Then the seeds seemed right. So I read dozens of personal histories and tried to imagine how I would feel with their results. When I got around to the proton therapy I could just feel it made more sense to me. I've been a workaholic all my life but my body is saying no more, slow down. I know the surgery would take it's toll on me.

Bob Marckini certainly has an incredible array of men, including many doctors, who have experienced good results from PB, and with such excellent results that it became obvious to me it is likely the wave of the future, just starting to gain in popularity. I do believe in science.

One thing for sure, there is nothing like these forums for such an incredible amount of information exchange. I'll be happy to be able to talk intelligently with my urologist next visit, for sure.

charley
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