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This member is a YANA Mentor This is his Country or State Flag

Rob Simon and Gayle live in Missouri, USA. He was 48 when he was diagnosed in July, 2005. His initial PSA was 0.80 ng/ml, his Gleason Score was 6, and he was staged T2a. His choice of treatment was External Beam Radiation (Proton Beam). Here is his story.

My brother Ron, to whom I was very close, died of prostate cancer just 2 years ago in August 2003. He was 62, and his cancer was diagnosed in an advanced state, having already metastasized to his bones at the time of diagnosis (at age 60) in August 2001. The reason for the advanced state was because he hadn't had a physical in many years, which frankly was not very prudent for a man over the age of 50. He knew this, and chastised himself about it constantly during the last two years of his life.

He made me promise to get annual physicals, since, as you all know, a man's likelihood of developing prostate cancer increases significantly if your father or brother had the disease (my father did not, to our knowledge; he died of a stroke at age 64, and my other brother, Bill, is alive and healthy at age 67).

I had my first physical within 6 months of Ron's diagnosis, and have had one annually ever since. It was during my annual physical this past March (2005) that my doctor noticed a small nodule on my prostate. My PSA was only 0.8 ng/ml, but due to the presence of the nodule, I was directed to an urologist for further checking, and he recommended that I have a biopsy, which I did in early May (by the way, my urologist is apparently very good at this based on other accounts I have read I had no pain and minimal discomfort during the actual procedure, and minimal after-effects). The results came back inconclusive; 11 of 12 mapped tissue samples were normal, however there was one tissue sample (from the area where the nodule is) that was considered "suspicious" and warranted another biopsy within the next few months (the doc advised that it be done no sooner than 6 weeks later), at which time they would focus on the area of suspicion.

I had this done 9 weeks later in early July, at which time they took 5 more samples from the suspicious area only, and I received the unfortunate results a week later T2a, GG 6 (3+3), PCa in less than 3% of the tissue, but fortunately fully contained (which was expected given the small size and low PSA).

I now have some decisions to make regarding treatment, and I intend to get a second and maybe even a third opinion before taking action, including a second pathological opinion on the biopsy considering the small amount of cancerous tissue. Assuming pathological agreement, I'm pretty certain that I will have treatment of some kind before the end of 2005, probably in October or November. My brother's experience and the fact that the tumor is palpable, albeit small and with low PSA, tells me that watchful waiting may be risky (I'm open to opinions). My type A personality also would make WW difficult.

You won't be at all surprised that my uro has suggested RP. He does robotic laparoscopic, which so far I like compared to open or even to standard laparoscopic, if surgery is my chosen route. Fortunately, I had already started researching prior to diagnosis, and had already learned much previously during my brother's ordeal, so I will consider all options, but at my age it seems that surgery or radiation therapy of some type (currently leaning toward IMRT in this category, but have yet to see a radiation oncologist, so far from my final opinion) are the best routes to consider (again, open to opinion). My wife Gayle has been very supportive emotionally, has helped with the research, and will be by my side helping me with all these decisions, and I am extremely lucky and thankful that we have such a close relationship. I can't imagine doing it without her help.

By the way, I'm in excellent physical shape, which should work to my advantage (I weigh the same now - 170 lbs as I did when I was in high school) with no other physical aliments other than the occasional sore muscles from overexertion. I have always exercised regularly and watched my diet, but I've probably eaten more red meat than I should have over the years and I've definitely drunk more beer and wine than I should have over my lifetime, but any truly abusive alcohol use was when I was in college and for a few years thereafter; back when I was "invincible" (I'm sure many of you can relate to those days).

I will add more once I have chosen my treatment. I will be soliciting advice from this and other support groups via e-mail throughout my decision process, and greatly appreciate any and all input.

UPDATED

October 2005

It's been three months since I wrote my initial story, and it seems like much longer. I have researched every option available to me, and am confident in my decision.

I originally indicated that I was leaning toward surgery. That was because it had been less than 2 weeks since my diagnosis, and I was leaning on my urologists words that surgery is best for younger men. For some it may be, and I certainly do not disparage the choice of surgery for those who are comfortable with it, but after researching it thoroughly, I frankly found that surgery scares me too much to be comfortable with it, regardless of the skill of the surgeon. I was not comfortable with watchful waiting (e.g. active surveillance) due to the fact that my brother died from advanced PCa, so I thoroughly evaluated all other options.

I strongly considered seed implants and IMRT, but in my opinion neither offer a better chance of success than proton therapy, and proton therapy appears to have much fewer side effects. I also looked at HIFU, but since it is not FDA approved and I cannot afford to pay for the procedure out of pocket (including the cost to travel outside the US), I chose proton therapy. I will be going to Loma Linda University medical Center in Southern California to begin treatments on Oct 24.

I had my orientation and planning session on Oct 6, and I am very impressed with the skill and caring of the nurses and doctors. The testimonials from former proton patients helped also - I spoke to 10 men who had the treatment, and corresponded via e-mail with at least 10 more, and all had nothing but glowing things to say about the treatment. I will have a total of 44 treatments in just over 2 months (they have recently increased the number of treatments from 40 to 44), so I should be finished just after Christmas if all goes according to plan. Fortunately, my wife will be able to join me in California, and I am very grateful that she will be with me. We found a place that will accommodate our two dogs, so they will be with us also. My company has been very accommodating also, in that they are allowing me to work part time on a remote basis. The great thing about proton therapy is that you don't feel bad during the treatments (or after), so working part of the time is very feasible.

For any men newly diagnosed and who have the flexibility to temporarily relocate if necessary, I strongly urge you to check out Loma Linda and proton therapy. I will update my story again once I have completed my treatments.

UPDATED

January 2006

I am writing this on January 18, 2006. I completed my proton radiation treatments at Loma Linda University Medical Center on December 30, 2005. I cannot emphasize enough how happy I am that I made this choice. My radiation oncologist was Dr. Carl Rossi, and he and his nurse Sharon Hoyle are very professional and caring people, as are the entire staff in the radiation medicine unit at LLUMC. I began my treatments the last week in October, and had a total of 45 treatments. They are administered once per day, 5 days a week, except on holidays. Most men have 44 treatments, but I needed to have one extra due to the density of my pelvic bone (I don't understand the physics behind that - I trusted my doctor on that decision). The total amount of radiation was the same as for men who receive 44 treatments, which I believe is 79.2 gy (it might be 79.6 - I don't have the sheet in front of me, but it's one or the other). At no time during my treatments did I feel bad. I worked out vigorously at LLU's workout facility (the Drayson Center - free to all patients) at least 3 times each week, and most weeks 4 times, I went on long walks daily with Gayle and the dogs, and I played 15 rounds of golf while I was there. Not a bad way to spend time during one's cancer treatments. Plus, as I mentioned in my previous update, I was able to work on a remote basis, putting in roughly 20 hours each week.

The only side effects I experienced during treatment was some burning during urination and during ejaculation. In both cases, it was lessened significantly by simply taking two Aleve per day. I also had a little more frequency of urination, but I attribute that more to the fact that I was drinking a lot more water. The burning is now completely gone less than three weeks post treatment. I have suffered no potency issues at all. Everything still works great in that regard, although there is very little fluid upon orgasm, and that will become even less over time. After all, they are killing the prostate!! I guess there is a chance of decreased potency over time. We'll see what happens, but right now everything's great, so I need to take advantage of it while I can!

Apparently, some men also experience increased fatigue from the treatment, but I had none. Dr. Rossi said that the level of activity during treatment helps limit fatigue, and I think I'm proof of that. My age probably helps in that respect, too - I was the youngest one there during my 9 weeks of treatment. However, age didn't seem to be a factor for many of my fellow patients - there were lots of men 20 years or more older than me who were also working out 3-4 (or more) days per week, and many of them were also playing golf regularly.

The support groups at LLUMC really make it an enjoyable experience. I have a difficult time imagining any other place with the level of care they offer. The treatments themselves are certainly not pleasant (read details), but they are by no means unbearable, and the techs do everything they can to make them as easy as possible. The only inconvenience is when the "machine" goes down (i.e. the accelerator or the computer), but that only happened about 8 times in ten weeks, and in most instances it was less than a two hour delay. Occasionally they are down for an entire day, which happened to me three times. That simply means that you don't get treated that day, come back the next day, and add a day to your stay.

My first post-treatment checkup, which will include PSA and DRE, will be 4 months after my final treatment, so sometime at the beginning of May. I will update again at that time. Until then, I'm not going to worry about cancer and get on with my life. I am confident that I am cured, and I feel very fortunate. I know there are no guarantees, but my statistical chances are very good, and positive mental attitude is as important as anything. If anyone wants to talk to me in more detail about my experience at Loma Linda, please do not hesitate to send me an e-mail, and we can exchange numbers. Best of luck to all men out there who are dancing with the bear.

One last comment - my treatments were fully covered by my insurance (subject to deductible and co-pay, of course), with no hassle whatsoever.

UPDATED

May 2006

I am writing this on May 16, 2006. I am just over 4 months post-treatment, and I just received the results of my first post-treatment PSA test. It is headed in the right direction, currently at 0.50 ng/ml. It was 0.80 ng/ml at diagnosis, so it is down by roughly 40%. We were told to expect a reduction between 30% and 50% at first test, but not to expect it to be as low as it will ultimately be. Dr. Rossi (my radiation oncologist at Loma Linda) advised that it sometimes takes as long as three years for the PSA to reach its nadir (i.e. low point) and that for most men it then stays at that point for many, many years (hopefully forever). In the interim, some of the earlier tests may even show a slight increase over the previous test. In most cases, this is a "PSA bounce", and not of concern. If it rises for three consecutive tests, then it may mean the cancer has returned. With radiation therapy of any kind, there is no assurance that PSA will become undetectable or register as less than 0.10 ng/ml, but as long as it remains low and steady over time, one should be confident about the long term. There are many former proton patients whose PSA leveled off around my current level of 0.50 ng/ml, so I remain confident in my long term prognosis.

As respects my general health otherwise, I'm feeling great. No urinary issues at all. Potency remains strong, although admittedly my stamina is not the same. But the result still feels good, and I've got enough stamina to keep my wife happy (that's what she says, anyway - maybe she's just being kind, but I think she's being truthful). I am religiously taking my supplements of vitamin E, Omega 3 fish oil, and selenium, and I continue to try to eat right. We are eating much less red meat, and a lot more tomato based foods. Work is stressful once again, but so what else is new. My reaction to work stress is a lot different than it used to be, though - an experience with prostate cancer really puts things in perspective.

My next PSA test is in October. Until then, I consider myself cancer free.

UPDATED

February 2007

This update is overdue. I have had many changes in my life since my last update, all positive. I'll keep this succinct.

In October 2006 I had my second post-treatment PSA test, and it was 0.6 ng/ml, up from 0.5 ng/ml in April. I had been told that a slight bounce was possible early on, but after informing my doctor and nurse at Loma Linda about the increase, they suggested that I have another test in about three months time. So, I waited until the end of January and had another PSA test, and am pleased to report that it is now 0.3 ng/ml. That was great news to start the New Year.

As for the rest of the "issues" associated with prostate cancer treatment, I am also pleased to say that I have no continence issues whatsoever, I never experienced any rectal bleeding as some proton patients do. My potency is still good, although admittedly it's not the same as it was pre-treatment, but I knew that would be the case.

The biggest change in our life is that in May of 2006 I accepted a job with a new firm and my wife and I (and our dogs) have relocated to Bermuda! From about as far away from the ocean as to can get in the US (St. Louis) to the middle of it. Its a great opportunity for me, although my work schedule is extremely busy. I try to minimize the stress. As I've said in previous updates, my view of work issues is a lot different than it was before I was diagnosed with cancer. We love living here, and will likely be here between 4 and 6 years. After that, who knows! I just consider myself extremely fortunate to have caught my cancer early and treated it, thereby allowing us to take advantage of this great opportunity.

All the best to all of you, wherever you may be on the road of battling this disease. The war is winnable!

UPDATED

February 2008

It's been one year since my last update. I am pleased to report that my most recent PSA test at the end of January 2008 was 0.3 ng/ml, which is exactly what it was in January 2007.

I did have a test in July 2007 as well, at which time it was 0.5 ng/ml. My doctors at Loma Linda advised me not to be concerned about the slight up tick in July, because it is common for their to be a slight PSA bounce within the first couple of years after radiation treatment. I will admit that I was nevertheless a little concerned going into my January 2008 test, because I certainly didn't want to see it increase two consecutive tests. Needless to say, the 0.3 result put my mind at ease.

Everything else is fine. Continence is perfect, no other internal issues, and potency remains the same as it was a year ago. Main issue in that respect is stamina. "Getting there" is not a problem, and the finish remains enjoyable!!

I encourage anyone who wants more information about my experience to contact me. I will update again in January 09.

UPDATED

May 2009

I can't believe it's been another 13 months since my last update [Rob tried to update as promised, but due to ISP problems, his update was lonly received in May], so I am now 39 months post treatment.

I am very pleased to report that my most recent PSA test at the end of February 2008 was 0.3 ng/ml, which is the same as it was in August 2008 and January 2008, so three consecutive readings at the same level. That leads me to believe I've reached my nadir, and I'm happy with that. Proton radiation does not necessarily lead to an undetectable PSA. There are many former proton patients living happy, healthy lives with PSAs higher than mine was at diagnosis (0.8).

Everything else is still fine - better than fine! Continence remains perfect, no other internal issues, and potency has, if anything, gotten better. I know that makes no sense, and perhaps it's just mental, but any "reluctance" that existed previously has essentially disappeared over the course of the past year. Stamina is still not what it was pre-treatment, and I don't expect it to be. But quite honestly, I went into this expecting some level of ED after three years, and that hasn't happened. I'm certainly not complaining.

I also had my first ever colonoscopy last spring, and the report from that was "all clear, come back for another in 10 years". The doctor knew I had radiation therapy, but he didn't know it was proton therapy. He told me that I had the least amount of radiation proctitus that he had ever seen in a man who had radiation therapy for prostate cancer. I then explained that I had proton therapy, and he said it shouldn't make a difference. I disagree, but I didn't tell him that.

I encourage anyone who wants more information about my experience to contact me. I will update again in early 2010.

UPDATED

June 2010

It's been a little over a year since my last update. I am pleased to report that my most recent PSA test in April 2010 was 0.3 ng/ml, which is the fourth reading of 0.3 in the last five (roughly every six months). The only deviation from that is the one from August 2009, which was 0.2 ng/ml. I think it is probably safe to say that I have reached my nadir. I will have another PSA test this fall, and if that one is in the same range, I will then revert to annual tests, since I am approaching my five year anniversary since completion of my proton radiation treatments (Dec 2010 will be five years). Just so everyone understands, it is normal for a PSA reading to remain after proton therapy. Rarely does the PSA reading hit 0.0 or less than 0.01 after protons.

For the purpose of full disclosure I will report that I had several instances of rectal bleeding over a period of four to five months in 2009. It first occurred in June, and occurred eight more times after that, most within the first month. Each time there was no discomfort, simply bright red blood in my stool and on the toilet tissue. It never occurred consecutive times. I am convinced that it is probably due to eating rougher food than I should which irritates my proctitis. Since I had a colonoscopy in April 2008 and got the "all clear", I'm not concerned about it, and it has not occurred yet in 2010.

Everything else remains normal. I have no continence issues, and have yet to meet a former proton patient that has had continence issues. I also have no potency issues. Four and a half years since completion of my treatment and my sex drive is the same as it was prior to treatment, which has always been strong, fortunately for me. [One of the predictors for a better chance of avoiding ED with all treatments is an active sex life prior to treatment]

We are still living in Bermuda and enjoying life. I can still be reached at the address below.

I will report again in 2011.

All the best to everyone.

UPDATED

December 2011

Sorry for not updating sooner than this.

Life is good - we have returned to the US from our ex-pat assignment in Bermuda and are now living and working in North Carolina near Charlotte.

My health continues to be great with no side effects from my proton treatment other than some minor rectal bleeding which my doctor has assured me is only some mild radiation proctitis that occasionally becomes irritated. No discomfort associated with it at all. Everything else, including potency, remains excellent. My PSA has remained steady at 0.3, which is what it has been for 5 years. Today (Dec 30) is the 6 year anniversary of my last treatment at Loma Linda.

I remain firmly convinced that proton radiation therapy is the best alternative for men with early stage prostate cancer.

UPDATED

January 2013

The only thing I have to report since my last update is that nothing has changed, and that's a very good thing! I completed my proton radiation treatments just over 7 years ago, and my health continues to be excellent. My most recent PSA (Oct 2012) was 0.3, which has now been the level for 6 years, and I continue to have virtually no side effects. Potency remains good. I'm not going to tell you that it's the same as it was when I was 25, but it's more than acceptable, and I have yet to need any "performance enhancing drugs". There is still some minor rectal bleeding on occasion, but it is nothing of concern according to my doctor.

I have seen quite a bit of media coverage over the past few years that disparages proton therapy due to its cost and due to the opinion that it is no more effective at treating cancer than other modalities. What they leave out in this commentary is side effects. I am confident that statistics will show that other treatment methods are equally effective for eradicating cancer. But no one can convince me that other treatment methods, particularly surgery, are equal to proton therapy in terms of side effects. I have a friend who had his prostate removed just a year after I had my treatment. He is cancer free, but he has never regained potency. From what I've learned over the years, that seems to be the case more often than not with surgery, whereas eveyone I've ever spoken to who has had proton therapy reports that their potency remains good. If the "cure" rate is roughly the same, but the side effects are far less, the choice seems obvious to me, with the caveat that I realize some men cannot take the time to travel or be away from work to have proton treatments. I was very fortunate to be able to do so.

Best to all.

UPDATED

March 2014

Hello, it has been a long time since I updated my story, for which I apologize. The reason it has been so long is because my life is completely normal, and I rarely think about the fact that I was ever treated; it's like I never had prostate cancer. My health is excellent and I continue to work full time for the same company that I have been with since 2006. I still experience minor rectal bleeding from time to time due to radiation proctitus, but I have seen my regular doctor as well as a proctologist about it, and I have been assured that it is nothing of concern. My blood work is normal in all ways, including a consistent PSA of 0.3 ng/ml. That has remained unchanged for almost 8 years. My "functionality" is still very good as well.

I will always be thankful that I chose proton radiation treatment as my modality for my cancer. I strongly encourage others to fully investigate this alternative as they make their treatment decision, especially since there are now so many proton treatment centers in the US, unlike 2005 when I was treated and there were only 3.

Best of luck to any men who are researching their options for the first time, and good health to all!!

UPDATED

May 2015

Hello, it has been over a year since my last update. To be honest, most of the time these days I forget I even had prostate cancer. My life is completely normal (and good), and my overall health is almost exactly as it was when I was diagnosed (which is excellent), other than the fact that I'm 10 years older with the normal aches and pains that come around occasionally when one is pushing 60. I was diagnosed 10 years ago this coming July. It's hard to believe it's been that long. I will never regret my decision to choose proton therapy. In my opinion, it's the only choice, assuming you have the time and the resources (either good insurance or wealth) to do it. I was fortunate to have excellent insurance in 2005. Today it would cost me a lot more out of pocket than it did 10 years ago. But knowing what I know now about the effectiveness of the treatment and lack of side effects, I would gladly pay a significant amount out of pocket to do it. Best of luck to all in your treatment decision.

UPDATED

June 2016

This is my first update in over a year; my apologies for being tardy. Last December 30 marked 10 years since my last proton radiation treatment for my prostate cancer. Life continues to be perfectly normal - everything is exactly as described in my previous updates, and I remain 100% certain that proton therapy was the right choice for me. I also think it is the right choice for any man with early stage cancer, assuming you have access to a center that provides the treatment and are able to afford it either on your own or via good insurance, but of course I am biased due to my great results. One item of note - it is my understanding my insurer at the time of my treatments in 2005 no longer will cover proton therapy. This makes no sense to me, as my long term results are excellent and therefore there have been no additional costs post-treatment. That would seem to be a strong argument for providing the coverage rather than denying it. We've had different insurance for many years now, and honestly I don't know if our current insurer would cover proton therapy or not, because I've never had reason to look into it. I was very fortunate to have full coverage at the time of my treatments (subject to deductibles and co-pays, of course).

Best of luck to all of you seeking treatment, and may whatever choice you make be the right one for you.

Rob's e-mail address is: robsimon78 AT yahoo.com (replace "AT" with "@")


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