Hello All,
I was just wondering if anyone has gone through the following treatment course at Mayo Clinic in Rochester. My Doctor said he is following the Fox study.
I tried looking for that study but I was unable to find it.
I am scheduled for a Moderate Hypo fractionated program (26 treatments 2.7 gy a day).
I did not have my Proton therapy at Mayo but I did have it eight years ago. No pain, not tired, no side effects. Congratulations to you on choosing Proton Beam Radiation.
Great to hear about your successful treatment. What are the factors that made it the right treatment for you. The doctors I've talked to have all said that it is not a treatment I should consider. (I should ask why, they spent more time talking about the reasons that other treatments are right, not why this one is wrong for me)
I had the same response from my urologist. So I asked my GP why I was getting the cold shoulder treatment and he said to me, "Jim, the medical profession is a business. We don't get any kickback "dollars" from treatment centers. Make the decision that you think is right for you." When I had my proton beam treatments their were only five centers in the United States provided proton therapy, now their must be close thirty. The cost to build a proton center is $160,000 million. Highly prohibitive to local hospitals to justify. I am from Iowa and the U of Iowa hospitals and clinics are some of the best in the country, I was able to visit with the various radiologists, surgeons, with the latest in technology at that time. But none could relieve my concerns about the side effects of their treatments.
I talked to a number of men that had had proton therapy and all had the same experiences that I have had over the past eight years. No side effects. No discomfort, no follow up treatments. Since my treatments, the U of Iowa has built a Proton Beam Center, Mayo has built two, one in Rochester and the other in Phoenix, Cancer centers have built several all over the country. Medicare approves it and will pay for it. Mine cost Twenty-five dollars, a co-pay charge for my first visit. You have made the right decision.
Oh, by the way, my urologist who diagnosed my cancer dropped me as a patient because I refused to let him treat my disease! Good Luck and God Bless You!
Wow what a tough question!!
Just to make things clear on my situation.
I am starting my treatment plan this coming Tuesday and I do not know what the results are going to be. Only my God does.
I am NOT qualified to make this decision on my treatment plan and I only wish there was a definitive answer for my situation.
If you ask a surgeon they will recommend surgery, if you ask a seed Doctor they will recommend seeds and if you ask a radiation external beam Doctor they will recommend external beam.
Just to recap here are my stats and information that I have compiled over the past two
months.
I am 52 years young or old depending on the day 
My health is good with the exception of the prostate cancer.
My biopsy revealed a Gleason 6 which has been confirmed by the local pathologist and the John Hopkins lab.
My local pathologist said I had cancer in 4 out of 13 samples. 2 cores were 5% or less
1 core 10% or less and 1 core 30% or less.
John Hopkins said I have cancer in 7 or 9 cores with one core having 80% percent less and another on had 30% or less, all others were 5% or less.
Based on my research I have a 1 out of 5 chance of having a more aggressive gleason in my prostate.
The following test confirm that the cancer is confined to the prostate.
Bone scan, 3t multiparamic MRI (before biopsy) and CT Pelvic.
Unfortunately my insurance will not pay for a PET scan choline 11 but with my numbers
my Doctors are not even considering this scan.
If you look at the memorial sloan calculators I have a pretty good chance of living another 15 years without doing nothing.
According to memorial sloan active surveillance program I do not qualify for active surveillance because of my age and the number of cores i have that have cancer.
There is a lot of debate about Gleason 6 in Urology circles about whether or not to treat or leave it alone. Feel free to read on google. Google Scholar is another good tool.
I have two google alerts setup. One of them is called Cancer Cure and Prostate Cancer Cure. It seems like every other day I hear about all of the treatments or potential treatments that are on the Horizon. Here is one that came into my inbox this morning.
medicalnewstoday.com/articl...
With all of the positive new on the Horizon am thinking that if they can control this disease for five years then I am hoping that they will have a better way to manage it or even cure it 5 years from now.
I read the book you can beat prostate cancer without having to resort to surgery by Bob Marckini. Call a proton center and there is a good chance they will send you a copy for free. In the middle of that book there is a decision making chart, this helped me to analyze the pros and cons of the various treatment options.
amazon.com/You-Can-Beat-Pro...
When I was first diagnosed my Urologist (surgeon) (age 48 in excellent health) said " As your your Doctor I recommend you have your prostate removed" then later on in the conversation he told me his Dad had prostate cancer and then he said "when I get prostate cancer I am going the radiation route". He told me radiation has come along way when it comes to accuracy and effectiveness. He told me with his active life style he could not handle the chance that he could be incontinent for the remainder of his life.
I met with a man from my Church "13 years post proton therapy" no cancer re-occurence, no ED, no incontinence and no side effects.
I met two other guys from my church.
One guy had a robotic RP, 3 years later his PSA ticked up. He went through radiation and now he is on ADT.
The other guy same situation.
My wife knows another man who had RP and no re occurrence yet but I do not know about his QOL.
I talked another guy who had robotic RP, six months later he is still dealing with ED issues and incontinence.
I met a guy who's dad had his prostate removed 30 years ago, he told me last week that his Dad's PSA started inching back up again.
I have emailed hundreds of Proton patients and received hundreds of good responses back.
One guy had a re occurrence 11 years later. He thinks that a cancer cell had already been released outside of the prostate before he started his treatment.
There are other options just in case all of the cancer is not killed in the prostate.
Tookad, Cryo, Hifu, Seed, (Salvage Surgery (difficult but can be done, I also heard from another Proton patient that Memorial Sloan (MSK) surgeons are working on some newer techniques on this option. They think this option will be perfected within 3 years).
If the cancer is not in the Prostate then I think you would have all of the same options that a surgical patient would have.
I also discovered that depending on your stage and Gleason score that there is high probability that microscopic cancer is already ready floating around outside of the prostate. This is why surgeons recommend radiation even after they do surgery.
My thinking is with my current situation why not use the best radiation option available today (Proton (pencil beam delivery)) and skip all of the side effects that can come with surgery. Note: With Proton they can treat up to a 12 mm margin around the prostate, in theory this is supposed to kill any cancer cells that may have gotten out of the prostate.
So to summarize my goal was to choose a treatment plan that is highly effective, least invasive and with the least amount of side effects (short term and long term).
For my situation, here are my top three.
Note: Seeds are a darn good option and in the hands of the right Doctor it is almost a toss up between Proton and Seeds but you may still have to deal with the side effects that come with seeds. Note: I am not saying that there are no side effects that comes with Proton but from all of my interviews with former patients and my own research it appears that there are far fewer than the other treatment options.
1. Proton Pencil Beam (using the most current\proven radiation treatment plan)
2. Proton Conformal Beam or Seeds (using the most current\proven radiation treatment plan)
3. Surgery
Now if I had a confirmed more aggressive cancer then I would re evaluate my options.
I.E Gleason 7 or higher
1. Surgery and Proton together
2. Proton and Seeds
and from what I have been reading maybe a little bit of that ADT as a cancer killing booster.
That is how I came to my conclusion.
One last thing to add.
This is a revision to my previous post.
I.E Only Gleason 7 (confirmed with Pet Choline 11 scan)
1. Proton Pencil Beam (using the most current aggressive\proven radiation treatment plan)
large margins, amplified dosage to the cancer lesions)
2. Proton conformal beam and maybe add in some seeds for escalated dosing.
3. Surgery
Gleason 8 or higher (confirmed with Pet Choline 11 scan)
1. Radical Prostate Removal with supplemental proton or photon radiation to kill the microscopic cancer cells. Preferably Proton.
and from what I have been reading maybe a little bit of that ADT as a cancer killing booster.
Note: All of the treatment options I mentioned apply if the cancer is still thought to be confined in the cancer (meaning the stage). From what I understand the higher the Gleason the more likely the cancer has left the prostate.
hhgh difference in biopsy results .... i think i would get a third opnion ...
gud luck
Hey Steveo, Thank You for posting, after reading it ... before had me schedule for surgery to having a consultation with the proton center in Baltimore MD .. totally have changed my thoughts, cannot wait to talk to them and have them tell me what to expect, they are also during a study that I fit that person so going to go thru the study (to help out anyway I can) if I go thru with the therapy. good Luck and I will be in touch to see how you are doing and to post my results from the study (not sure what treatment I will be going for but right now proton seems to me the Best option .. will see this coming Thursday.
Take Care and Thank You So Much Again For Posting and for everyone else that has chimed in =) !!!
Tony
Tony,
Good luck to whatever you choose. If you decided to go for Proton you may have a hard time getting insurance to approve it, they will most likely tell you that photon or surgery is your only option.
Tony,
Here is another example that just came into my inbox today of what is on the horizon.
"I don't think there's a limit to the type of tumor we could potentially treat, as long as it has been infiltrated by the immune system," Dr. Levy concludes.
medicalnewstoday.com/articl...
This links talks about infiltrating a prostate cancer tumor via the immune system.
Apparently prostate cancer is a tough nut to crack.
hopkinsmedicine.org/brady-u....
Thanks Steve .. I believe you are making the right choice and I will probably be making the same right choice =)
I hope and pray that I am, but time will tell.
My only small concern is that I am in the moderate hypo fractionated program. I kinda feel like I am getting ready to take a ride on the newer version of the USS Enterprise from Star Trek.
Tony,
This was another cool tool I used.
pctrf.org/comparing-treatme...
Now some of these studies and results were done years ago.
I think when Proton first came out they were still trying to figure out how much radiation was needed to kill all of the cancer and get good consistent results. I noticed after visiting 4 proton sites each one had different protocols.
Here are the protocols that was recommended to me for each location.
45 treatments, 1.8 gy a day Total 81gy Conformal Beam location California
39 treatments 2.0 gy a day Total 78gy Pencil Beam location Tennessee
26 treatments 2.7 gy a day Total 70.2gy Pencil Beam location Minnesota
44 treatments 1.8 gy a day Total 79.2gy Conformal Beam Illinois
I will be getting the 26 treatment protocol (Moderate Hypo Fractionated). When I asked my Doctor if it was just as effective as the protocol that uses the total of 79.2 gy, he said yes and the QOL was the same to. He mentioned the Fox study.
I am thinking the insurance companies are pressuring the medically community to keep the cost down this is why you will see more shortened Proton and Photon programs come on line.
mayo clinic rochester is said to charge the same for proton as other forms of radiation.
Yes that is what I was told by the main insurance guy over there. But their out-of-pocket cost is way more than what the Tennessee program would charge me if I had to pay for it out of pocket.
Hi Steve. I am scheduled for my Proton consult at MD Anderson on May 21st. I am seriously thinking the Pencil Beam may be the best option for me. I would be interested to know what you decided and how your treatment is going. Thank you for posting all of your research. It helps. Andy
The treatment side effects were minimal. I am scheduled to get my first PSA check in July.
My urine streams seem stronger, erections are good. Let me know if you have any specific questions.
He may be talking about Fox Chase which has a number of clinical trials. See foxchase.org/news/2017-04-1...
Now thar you mention it he did mention the Fox Chase study. I was trying to find the numbers on that study couldn't find them I'm assuming it was similar to the Florida proton study which was very effective using the lower dosage but longer treatments I believe it was 99% at 5 years.
Things are great!
I just got back from Mayo a week ago. My psa is .021 previous reading was .028
Minimal side effects (minor ED)
I occasionally take 20mg viagra.
Sometimes I dont even need it.
Next year will be my 5 year anniversary.
🤞🙏💪
I'm at a similar point now. How have things been 4yrs later?
BCF after 9 years post proton therapy
Proton Therapy verses SBRT side effect differences
EBRT- (External Beam Radiation Therapy) 
Deciding What Treatments for Localized PCa.
Fatigue BEFORE treatment (A bit of a rant) 
