In late May, 2005 I went to my doctor for a routine physical. I also was concerned about a mole on my back. My brother had just been diagnosed with Malignant Melanoma. As part of the physical he ordered a full blood workup. That was when I learned I had an elevated PSA 11.137 ng/ml. I was referred to a Urologist for follow up.

My GP told me that the high PSA may not be a problem but when he mentioned the dreaded "C" word my brain short-circuited and I really don't remember to much after that.

When I got home I told my wife. We had a long talk about it and decided to keep a positive attitude about it. After all, there are many reasons for elevated PSA.

I wouldn't be here if there was no problem. Four days ago I got a call from the Urologist. He told me my Biopsy was positive for cancer cells. I had CANCER.

I have to admit I did not take it very well. The first hour or so wasn't to bad. The Urologist's words were still in my head. "Don't let this upset you to much. It is very treatable and you have plenty of time. It is in the early stages and there are many options for treatment." He also told me that I may want to just keep an eye on it. See how it progresses. He wanted to see me in his office so we could discuss the options. I have an appointment for August 11, 2005. It would be sooner but my wife and I already had plans for a week vacation in Nashville, TN and we decided not to postpone it. After all, I have plenty of time. Right?

Well, then it hit me. I have Cancer. That night I was a basket case. I was scared to death. I have always had a fear of dying and now it hit me like a ton of bricks. I lay in bed trembling. My wife helped me through the night.

Now I am on a crusade to find out everything I can about my cancer. Alternative treatments, Surgery, Radiation, You name it. I have not even met with the Urologist yet but when I do I hope to know as much about this thing as he does, maybe more. I am still pretty shook up. It dominates my thoughts. I can get away from it for a few minutes but it just creeps back in. I guess my biggest fear now is whether or not it is contained. My wife got the Pathology report from the Hospital. She is a nurse there. It indicates no spread outside of the prostate but I know only a bone scan and MRI will tell for sure.

I want to continue updating this and let you know where my journey leads. I want to thank all of you that have come before me to tell your story. Reading them has helped. I wish there was live chat somewhere I could go. Or just someone to talk to.

Oh! by the way. I asked the Urologists if I had to worry about any complications from the biopsy. He said not really, sometimes there might be infection but we can handle that easily. Well he did not tell me that the biopsy could accelerate the cancer or provide a pathway for it to escape the Prostate. If he had I might have insisted on an MRI or some other form of imagery before he did the biopsy. I am still angry at that. Taught me a lesson. Be informed , educate yourself. Trust NO ONE.

In early September 2005 I was in a state of panic. I had spent 6 weeks reading everything I could find on Prostate Cancer. The Partin tables were telling me I had a pretty good chance the cancer had spread outside my prostate. I was pretty convinced I was a walking dead man.

My wife and I had poster boards hanging on the walls with charts and diagrams we had made trying to compare treatments. I had stacks of papers and pamphlets all over the place. I had been sent information from different treatment centers. All, of course, urged me to take their treatment as I was a perfect candidate for them. Their treatment would be the ONLY one to cure me. I was a basket case. I was angry. Why hadn't my doctor tested my PSA. I went 10 years to this doctor and he never once suggested I get a PSA test. I wasn't sure who to blame, him or myself.

I finally told my wife it was time to make a decision. I had to choose a treatment. I started reviewing the charts and thinking back over the progress I had made. I soon realized that I always kept going back to Proton Beam. When I looked at cure rates Proton seemed to work about as well as the others. When I looked at side effects Proton seemed to have the fewest. When I talked to men treated with Proton they seemed to be the most satisfied.As I reviewed the charts the numbers and percentages all seemed to point to Proton as the Treatment that would work best for me. Keep in mind that phrase, TREATMENT THAT WOULD WORK BEST FOR ME. That is important. You have got to look at Prostate Cancer as an individual not as a group. Each man has a different case.

I made one more phone call to Bob Marckini. He is the founder of Proton Bob. He urged me to call the men on the contact list. I did. I am now at Loma Linda Medical Center in California. I am on my 10th day of treatment.

There was concern over whether my cancer was outside the prostate or not so I underwent a endorectal MRI with spectography. It showed no evidence of extracapsular extension. That is significant because it determines whether you will receive Proton only or a combination Proton/Photon radiation. Obviously Proton alone is preferable. There are less side effects. However the side effects of the combination treatment are significantly less than with Photon alone.

This is getting a bit long so I'll cut it short. If you want to know more about Proton go to Proton Bob. In closing I will say the Doctors and staff at this facitily are wonderful caring people and every effort is made to make sure your treatment is a good experience. Actually we are having a lot of fun here. As they say, It is a Radiation Vacation.

Any questions please feel free to call me or email me.

Good luck and I wish you well.

I must apologize for not updating sooner. Truth is I have been in such good health I have just about forgotten I had Prostate cancer.

My last PSA was done 6 months ago. I decided I was not going to run to the doctor every couple months for an update. Proton takes as much as 2 years to finish its work. Until then I will not know my outcome. But based on the men I have talked with who have received Proton I believe I will be OK.

It has been eleven months and five days since I was given my last dose of Protons. So far I am doing fine. I had a couple months of off and on urinary discomfort that was helped by Flomax. Beyond that I have had no problems.

Prior to treatment I had a few problems with ED. During treatment my Doc gave me some Viagra to try. Well it worked great. I still use it occasionally but most of the time it is not needed. I have never had a single incidence of incontinence.

The Docs at Loma Linda told me to expect about a 30% drop in PSA with the first six months. My PSA dropped from a high of 14.7 ng/ml to 4.3 ng/ml (think it was .3) I don't have it in front of me right now. In either case it was about a 70% drop. I was happy about that. DRE was negative. My Doc said it felt normal but was a little "mushy". Well I guess 44 Proton treatments will do the to ya.

I have a script for a PSA test right now. I just need to get in to get it done. But, it is hunting season now and I have been spending my days stomping around in the woods and swamp behind my house in search of that big Whitetail Buck that I know lives out there. I got a nice Doe last week. So the meat is in the freezer. Very Lean red meat I might add. I also shot a nice Turkey last month so I have been having a good season so far.

I promise to get my PSA checked soon and I will post my results. I recommend Proton therapy as a treatment for Prostate cancer. But, having said that, no one can say what the long term outcome will be until you get there. I look forward to many more deer hunting seasons.

This will be a very Merry Christmas indeed. My last update I said my PSA had dropped to 4.7 ng/ml. I was mistaken. It was 3.7 ng/ml.

Last Thursday I finally got up the nerve to go for my 1 year follow up PSA. I was a bit tense about it. I just got a call from my Doc. PSA 1.6 ng/ml....... Woooooo hooooooo!! Life is good.

I did not realize how tense my wife was about it until I saw the tears. Happy tears.

So from a high of 14.7 ng/ml prior to Proton treatment to 1.6 ng/ml. That is good news indeed. My Doc wanted to know if I was on any Hormone treatment he didn't know about. He was very surprised at this PSA level. But, that does not surprise me since he also knew nothing about Proton Radiation when I told him that was my choice of treatment.

So far zero side effects from the treatment. I feel fine and all systems are functioning just fine. Guess I'll relax until my next PSA level test in six months. Anyone wants more info on Proton call me or go to Proton Bob.

Bill Robinson

I want to touch base since it has been so long. I have not had a recent PSA test done. My Insurance Company is balking at doing them more than once a year because my last PSA was normal. Can you believe that?! It's as if I never had the cancer . Never mind that my doc wants to make sure it hasn't come back. My last PSA was April 2007 so I have to wait until April to get an update. I will come back and update as soon as I get the test. Just so you know I am fine. No side effects from the Proton Beam at all.

I have developed a few other medical problems but non related to the cancer or the treatment.

I want to let everyone know how things are progressing. I updated a couple weeks ago but did not have a current PSA reading to share.

Well I got the news yesterday. My PSA is 0.72. I am two years post treatment and that is right on target. I still have no side effects from the treatment and I feel great.

Heck I am having more problems from stopping smoking than from the Cancer. I have gained 20 pounds in 8 months. I need to lose some weight.

I am happy to report that I am still here. I am also happy to report that as far as I know I am Cancer free. I never say "cured" because I don't think you ever are. It will be 4 years since I started treatment in September 2005. I think my story is pretty typical of the men who have received Proton Therapy for their Prostate Cancer.

The only real side effect I have experienced is urgency of bowel but I would not consider it severe. It has gotten better. Rarely is a problem. I just had to plan my day a little better. I also have learned to eat a healthier diet. Staying regular and consistent helps a lot.

There has been occasional ED but I really don't think it is any more of a problem than it was before Proton. So I can't actually blame it on the Proton treatment. Viagra as needed takes care of that.

I had one episode of rectal bleeding but it was after a little constipation. It only happened once.

That is the extent of my side effects from the Proton treatment. I am doing fine. I still recommend Proton as the choice of treatment for Prostate Cancer. I was treated at Loma Linda Medical Center in California. I highly recommend them. I cannot speak for the other Proton treatment centers.

Good luck guys. If you have any questions please feel free to contact me.

Bill

Well folks,

One more year has passed and it seems all is well in Prostateville. My latest PSA was done Nov 23, 2009. It is 0.59 This PSA test was done in a different Lab so there may be some variation from my last test. When possible it is best to use the same Lab but I have relocated 500 miles south. And I must say I am liking the weather here.

As for the rest, no real glaring side effects have shown up. I did have the one episode of rectal bleeding but it never happened again. The Colonoscopy I had showed some minor revascularation (whatever that means). The Doc said it was nothing to worry about. Hey! it ain't his Colon. Of course I am going to worry about it. I still have some urgency of bowel but I have that under control. A BM in the morning and I am set for the day. No accidents. And it is getting better.

ED is still a bit of a problem. The mechanics work ok it seems my Libido might be the problem. Viagra still works fine. I have been under a lot of stress this last year. My younger Brother, 54 years old, was diagnosed with NHL (non-Hodgkin's lymphoma) right after Christmas last year. He fought it hard but lost his fight in September. I am still suffering from that. I cannot accept that he is dead. I am having problems with depression. I also relocated to another state, bought a new house and my old house has not sold.

Beyond that I am OK. I believe my Cancer is gone and will not return. I will continue to update my story. but only once a year when I get my PSA checked. I am still writing songs and making a little music. But this year I have not done much.

Feel free to contact me if you have any questions about Proton Treatment.

Bill

My goodness, how the time goes by. I guess this is going to be a very boring update. It's been more than five years since I was treated for my Cancer. I guess I'm past the five year survival rate statistic. I look forward to the ten year mark.

My PSA has stayed the same for a few years. No change is good news. I am due for my yearly check. I am sure it will be fine. If it isn't I'll let you all know.

I am happy to report I am doing just fine. I don't have any side effects that I consider related to the Proton Treatment or Prostate Cancer. I still have some ED. I had it before the treatment and it is no different now than it was before. I recently learned it was likely due to Low T. But I use Viagra and it takes care of it. They have medication to raise my Testosterone level but I am reluctant to do so because Prostate cancer feeds on Testosterone. [This is a subject of considerable debate on Internet Forums. There is a developing view that in some cases where the disease seems to have stabilized or remained in remission some form of Testosterone therapy may help men with low levels. No Testosterone supplements should be taken without medical approval or discussion.]

I am due for my annual checkup next month and I will discuss it with my doctor then. It seems Low T causes some other issues as well. If the Treatment will help those issues I might consider it. Bottom line is I have no side effects to report from Proton Treatment. As far as I know my Cancer is gone. As long as my PSA stays around 0.55 I guess I am OK.

Anyone considering Proton should go ahead if they believe it is the correct choice for them.

It has been 6-1/2 years since I received Proton Beam Treatment at Loma Linda Medical Center. I still have some ED issues but for the most part I am still functional. To be clear the ED started before the treatment so I do not believe Proton had anything to do with it.

I have no other side effects from the treatment. I really don't think about it any more. My last PSA was 0.56 That was a year ago I am due for a check now. I have no reason to believe my PSA will be any different this time. I think 0.56 is my Nadir. If there is any change I will update.

I am doing fine. AS far as I am concerned my Cancer is gone. The Proton treatment was a success and I would recommend it to anyone.

Good luck to you all in whatever treatment you choose.

I had a slight increase last year in my PSA to 0.69 but I am not concerned. My PSA has stayed right around 0.56 and I believe a change of 0.13 is of no consequence. It's been 7 1/2 years since I was treated with Proton at Loma Linda and I have had no changes.

It's been almost a year since my last PSA test. I guess it's time for another. If there is any increase I will come back and update this report.

It has been almost 9 years since my Proton treatment. To be honest I have not thought much about it these last two years. I have not had a PSA test for about two years. I think my last was 0.67

I still have the same amount of ED but I do not believe it was caused by Proton. I was developing ED before I was diagnosed with PCA. I have since learned my Testosterone levels are very low and probably were very low prior to PCA. Since I cannot take Testosterone because of PCA I really cannot do much about it. Viagra helps but it cannot induce desire.

I really have no other news other than to say I feel fine. I am approaching my 70th birthday and do hope to see another decade.

I suppose I should get my PSA tested but I am not sure what difference it would make at this point. If it is back I suppose I could go on Hormone therapy until it becomes resistant. But so far I'm not sure I want to know.

Diagnosed in 2005 treated at Loma Linda with Proton Beam. It has been a long time since I have updated my story. Nothing new to report. I'm still here. I started having ED issues about a year prior to treatment. I also had some bowel Urgency prior to treatment. It worsened after treatment but is now pretty much under control. My ED was due to a very low Testosterone level. Unfortunately it is recommended we do not use T supplements or anything to increase our T levels. So it is risk Cancer returning or suffer the effects of Low T. It's been 11 years and so far no recurrence. I guess it is possible to have Prostate Cancer with low Testosterone levels. Maybe that is why mine has not returned but I prefer to believe it is the result of Proton Beam.

It's been a while since I updated. I guess one of the benefits of a successful treatment is after a while you just forget about it. I think the only time I think about it is when I get some ache in a bone that I can't account for. That old fear of "what if it got out of my Prostate before the Protons destroyed it all" question pops into my mind. But then the pain goes away and I get my yearly PSA test result and all is good and forgotten again. The question of side effects always comes up. The same year I was diagnosed with Prostate Cancer I had already had two things start. One was bowel urgency and some "leakage". Doc told me it was not uncommon as we age. The sphincter gets weak. Did the Proton treatment make it worse? I don't think so. It was gonna get worse anyway. Kegel exercises have helped keep it under control. The other is E.D. That started early in the year before the Cancer DX. It got progressively worse as the year went on and has never improved. I later found out it is Low Testosterone that caused it. My count is about as low as it can get with having none. It also caused weight gain and lack of energy (or drive) Viagra helped for a while but without Testosterone you're pretty much screwed (no pun intended). And since I have Prostate Cancer I have been advised by all my doctors to NEVER take testosterone supplements. So, no Testosterone, no sex. I guess I could force it but I just do not have any sex drive. Would I call that a side effect? Absolutely. I cannot take Testosterone supplements because I had Prostate Cancer and since my Prostate was not completely removed it is a risk. If Proton left enough Prostate for cancer to redevelop. So far it has not. So 12 years later I am still Cancer free. Would I choose Proton again. Yes. Nothing has changed that.

Not much to add. I am 74 years old now. It's been 13 years since I was treated at Loma Linda in California. I have been impotent for several years now. I don't think Proton had anything to do with it as it started before treatment. I have extremely low Testosterone levels. Doctors do not want me to treat it because of the Prostate Cancer history. It's a choice to risk it or not. Either way I am apparently cancer free. It never even enters my mind unless something happens to trigger it. I had some lower back pain last year so I went in for a PSA test just to be sure. I think it was 0.09. I can't really remember for sure. For anyone trying to decide what to do I recommend Proton but do your own research and do what works for you.

15 years and all is well. Nothing to add beyond my previous entries.

It's been 15 years since I had Proton radiation for my prostate cancer. One of the main points for proton was no radiation side effects.

A few months ago I started seeing blood in my urine. I went to the doctor. They looked in my bladder to see why. Found I have radiation cystitis from the Proton. That is probably the source of the bleeding. They also found a small spot of cancer. I then had surgery to remove the small spot of cancer. They also found I have an enlarged prostate and some radiation damage in my prostate. The result is I am not recovering well from the surgery. 5 weeks out and I am now stress incontinent, still bleeding more than before the surgery and having bladder spasms.

So I guess the original claim of no side effects is inaccurate. But the good news is still no prostate cancer.

Hopefully time will cure the stress incontinence and the bleeding will stop.

Thought I'd update this. 5 weeks since bladder surgery. It was done with a scope through my penis which means through the urethra and prostate. I'm still seeing blood in my urine and have stress incontinence. The only reason I am updating is I am not sure how long this is going to continue. I am not healing because I have radiation cystitis. I am not unhappy about being treated with proton but I am unhappy it damaged my bladder. Did it cause the cancer? I put in a call to Loma Linda and explained my situation. The person I talked to said she was forwarding my information to the Doctor who treated me and he would contact me. It's been a week and I have not heard from him. It is getting more difficult to trust ccx anyone.

If you are considering Proton beware. What 5hey told me is a LIE. I was told no radiation cystitis would occur. No healthy tissue would have permanent damage. Protons destroy sick tissue and healthy tissue would heal just fine. That is a lie. I was told the proton were targeted so specially no tissue outside the prostate would be affected. That was a LIE. The main reason I chose proton was based on those lies, few side effects. I called Loma Linda and t as liked to them. They told me the protons were allowed to hit a larger margin to make sure any cancer outside my prostate was radiated. I had no cancer outside my Prostate.

I am now facing major surgery to correct the stricture in my urethra caused by the Proton radiation. Had I not been lied to I would probably have chosen robotic prostate surgery.

Trust no one.

If you are considering Proton beware. What 5hey told me is a LIE. I was told no radiation cystitis would occur. No healthy tissue would have permanent damage. Protons destroy sick tissue and healthy tissue would heal just fine. That is a lie. I was told the proton were targeted so specially no tissue outside the prostate would be affected. That was a LIE. The main reason I chose proton was based on those lies, few side effects. I called Loma Linda and t as liked to them. They told me the protons were allowed to hit a larger margin to make sure any cancer outside my prostate was radiated. I had no cancer outside my Prostate.

I am now facing major surgery to correct the stricture in my urethra caused by the Proton radiation. Had I not been lied to I would probably have chosen robotic prostate surgery.

Trust no one.

not complaing to much. I knew the risks of radiation. but of course I bought the hype Proton only kills cancer cells and healthy cells would repair themselves. well the cancer cells were killed. my last psa two years ago was 0.26. but I was getting blood in my urine. had a spot of cancer in my bladder' Surgery removed it but there was significant scarring in my urethra from Proton radiation. the proceedure aggeavated the scarring causing a stricture and I could not urinate. surgery fixed that but the damage was done, removing the stricture also removed the ability to hold my urine, now i I am incontinent. But, I am still alive 19 years later. I have heard they have refined the proceedure. not sure I believe it since they lied to us to begin with.

I called Loma Linda and tralked to the doctor I had. he didn't deny it. he also said they increased the margin to be sure they got all the cancer. I had an endorectal MRI which showed the cancer was confined to my prostate so why?

Bill's e-mail address is: willrobsmusic AT gmail.com (replace "AT" with "@")