THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2017 SO THERE IS NO UPDATE.
I am 54 years old and I am a civil engineer by profession. I live in Atlanta, Georgia, but originally born in Toronto, Canada.
After the urging of my family, a very dear friend and another doctor, I decided to have a physical in September 2008 (my last one was in 2000). I felt great, no medical issues to speak of then or in the past other than a few minor back and neck issues. My initial PSA came in at 10.8. The DRE (Digital Rectal Examination) did not indicate anything unusual as reported by my primary physician.
A subsequent PSA was 11.8 and a % free PSA of 5%. With this knowledge at hand, I was sent to a urologist and a subsequent DRE and biopsy. The urologist indicated that there was a slight indication of something on the prostate. The biopsy was a literal pain in the *ss, and the side affects were not particularly pleasant, particularly upon the first time ejaculating after the biopsy. On October 20th, while attending a class in Salt Lake City, Utah, I was given the news by the urologist. I had prostate cancer. In my heart I was not overly surprised, but I do admit to being really pissed off and initially in a state of denial. I realized probably more so than ever, I was mortal, I was no longer "bullet-proof" as I thought of myself well into my forties and even somewhat til October 20th.
My father had prostate cancer as did my maternal grandfather (ages 83 and 68 respectively). I thought at 54 I figured I still had 10 to 15 years before I had to be concerned...not so, apparently. I had been negligent in getting myself checked and was now going to pay some price for that neglect.
Following a meeting with my urologist, I was given the outcome of the biopsy. 6 of 12 cores were cancerous involving 10 to 80 percent of the surface area of the core. The options for treatment were explained to me and the research part of the journey then began. The first thing I asked my urologist was where I could find a prostate cancer support group. He seemed somewhat reluctant or uninterested in telling me, but I persevered and found 2 in the Atlanta area. One at Emory University and the other at St. Joseph Hospital. I visited both the first opportunity I had after my diagnosis. In hindsight, it was the best choice I ever made. I met men who were well along their "journey" (this seems to be one of the words I have found to be synonymous with prostate cancer and I suspect all cancer victims) and men, who like me, were newly diagnosed. The brotherhood of men who had preceded me with this disease and its treatment were all, comforting, supportive, very knowledgeable and were like mentors to me. I owe them a debt of gratitude and sincere appreciation for what they gave me and what I will give others when I am called upon.
It was not so difficult to take the diagnosis after the initial emotions had passed. As a family, my wife had already fought a battle with breast cancer in 2004 and a dear friend had battled breast cancer at age 24 and then skin cancer recently. Both are cancer free as of this writing and I am humbly thankful to God and Jesus for that blessing bestowed upon both them.
Since those initial cancer support group meetings, I have talked with probably over 100 men in pre-treatment and post treatment stages of prostate cancer or cancer that has or is being controlled. I have talked to 4 urologists/surgeons, a medical oncologist and in the past 5 months, have had at least 18 visits to doctors, and been scanned, poked with needles, probed/prodded in the "posterior region" by doctor's fists and with something that resembled a rather large cucumber, one that any farmer would have been proud of (except it wasn't green) during the biopsy. I've had more visits that I had probably collectively had in the past 50 years.
As well, like so many men before me, I have researched sites on the internet, read books, talked or emailed other men and have asked a lot of questions of those men that have past through this unfortunate gate before me. The more I learned about prostate cancer, the more questions I had. While I consider myself a relatively polite and reserved person, I asked question of these men that I don't think I could have mustered the courage to do prior to my diagnosis (i.e. incontinence, sexual impotence). Most men gave freely of their story. Some stories were those that discouraged me, others encouraged me. I experienced many emotions during this phase of the journey and knew that I would fit in somewhere between the bookends of the "good and "not so good" post-treatment stories.
Til now, and with the exception of family, close friends, my "support team members" and a few select co-workers, I have kept my cancer diagnosis to myself. The intent was not to hide it, but to not burden others with not knowing what to say or feeling awkward or feeling sorry for me. A personal choice.
So that brings me to today, Saturday March 28, 2009. Through the months of learning, I am nearing my decision. Some 6 weeks ago I made an appointment to have robotic surgery on May 5th. After being informed by a support group member of proton radiation therapy in January, I am now seriously looking at that as my treatment option. None of the doctors I have been to, have been supportive of it, let alone bring it to my attention in the first place. I have recently made a visit to the proton facility at Loma Linda University in California and have a consultation at the University of Florida proton facility on April 2. Through all of my efforts and the help of others, I believe I am nearly there now. The visit to Florida will confirm the path I chose.
Recently people have asked me about not having made a decision yet. I feel comfort in knowing I have traveled this path with a purpose, to get to a point where I had researched it, assessed the pro's/cons and as Frank Sinatra sang "I did it my way". If I have caused myself any harm by waiting 6 months since my diagnosis to reach that decision, then I again, "did it to myself". I have no regrets, no looking back and I did what I thought was right thing to do and and prayed. I have been told by several of the doctors I visited "that at my stage", it was a slow growing cancer, no need to rush, but I could not linger with a decision".
The first phase of this "journey" is nearing an end with my choice of treatment, and the next stage is the treatment and post treatment lies ahead.
April 30, 2009 Have finally come to the end of my initial journey for treating my prostate cancer. In some ways October 20, 2008 when I first got the diagnosis, seems like ages ago. In many ways it was, yet it is only 6 months. I, like many men before me and many that will follow, have been rudely introduced to an extreme annoyance and distraction in our lives in the form of being told you have prostate cancer. I have attempted to research what this cancer is, what the treatment options are and discuss so many things with other men who have passed this way before. It has somewhat exhausted me mentally, but I am also relieved in the fact that I felt I did the due diligence I needed to. Could I have done more investigation/research etc.?, Absolutely, could I have done less and just chosen a treatment 5 months ago?, Sure. As an engineer though, I've been trained to confront a problem by gathering facts, research, investigate, then review all of the data and then formulate a recommendation.
My recommendation to myself is to do Proton Radiation treatment. I investigated and went to both Florida Proton and Loma Linda University Medical Center in California. I felt that both centers would be comparable in the level and treatment and care. It all really came down to who would be able to start me on my treatments sooner and pray to help guide me. It was LLUMC. I will go for the consult May 7th and 8th and told I will start treatments the following week.
Through all of this journey, I just want to extend my sincere thanks to the many men and "prostate cancer survivor comrades" at the two Prostate Cancer support groups I attend here in Atlanta, Terry Herbert who diligently keeps this website up to date, two co-workers, Bob Marckini for his great book and the BOB website he started years ago that provided me with the opportunity of meeting some incredible men who gave of their time and patience to answer my questions unselfishly. To all thank you. I will re-pay your kindness, by being what you all were to me, a friend and source of information, support and camaraderie.
Now, away I go...... to the next step in the journey.
May 25,2009 After driving 2,275 miles from from Atlanta, Georgia to Loma Linda University Medical Center in California this past weekend, I am ready to start my proton radiation treatments tomorrow (May 26th). It is with some relief and now anticipation, that I am at this point today. The past 6 months since my diagnosis has been a journey of learning about PCa, the treatment options and finally coming to a decision.
I feel fortunate and blessed to have had these months to interact with other men who have gone through a journey similar to mine and for the support of family, special friends and co-workers who have helped me get to this point of contentment in having made what I believe is the right choice for me.
The next part of the journey starts tomorrow.
June 11, 2009 Treatment number 13 of 45 completed today. No significant side effects to speak of other than increased frequency to urinate. This is really to be expected since I am drinking more water than usual and that is not uncommon during the treatments. A little bit of fatigue set in this week, although not serious.
I continue to ride my road bike most days and swim down at the Drayson Center, neither are causing any serious irritation to the prostate at this point. After, finally having gotten settled in here and into a more regular schedule of treatments, I've been better able to coordinate going to the gym, doing my work remotely by computer, ride my bike and attend many of the functions organized for the proton radiation treatment patients.
I have met many great men and their spouses through these functions as well as at the apartment where I'm staying as it is specifically for proton radiation patients. I have been contacted by a number of men recently diagnosed with PCa vi a the YANA website, and hopefully been able to provide insights and answers to their questions about my journey so far. It's great being able to provide any help I can to others, as was done for me. Again, many thanks to Terry Herbert for the superb job he does in managing this website.
The camaraderie and fellowship of the other men and their spouses as well as the superb treatment, professionalism and caring provided by the entire proton radiation medical staff I've met so far at Loma Linda UMC makes a huge and positive difference in the outlook one has on "having cancer". The story continues......
July 8, 2009 Proton radiation treatment number 30 of 45 is now history. 3 weeks left to go barring any equipment issues.
The treatments continue to go smoothly and very few side effects. The occasional burning during urination or ejaculation is handled easily with an Ibuprofen, so there are no significant issues there. Several men indicate that they have to take Flomax to help with urination, but other than that, no significant problems that I have heard of.
It's been quite an experience here to date. I continue to attend the pot luck dinners organized by the patients and the Wednesday support group meetings. These functions permit me to get insights into how other men are doing and to share that fellowship with them and with their spouses who were able to bring them along. The atmosphere is collegial, caring and uplifting with both humor and seriousness mixed in. This is part of the proton experience here.
I have been afforded the opportunity to run, cycle and swim daily. Both nutrition and exercise is promoted as part of the healing process at Loma Linda. My daughter and I entered and participated in a Triathlon sprint (5k run, 9k bike ride and 100 yd swim) in San Bernardino Calif. at the end of June. While she finished 2nd in her age group for the 5k run, I was happy just to complete the triathlon and while I had no thoughts of finishing 1st (this was the first triathlon I have ever entered), just finishing it was a personal victory for me. I plan to run in a 5k event in Pasadena Calif. in late July at the Rose Bowl before heading home to Atlanta. Looking forward to that.
As I continue to realize with each passing day, its not enough to be a bystander in life but to get onto the field and play..the key to life is to "Live" and to savor each and every day. Along with the treatments and side events, I still manage to get some work done remotely from my computer.
The staff at the Loma Linda Proton Treatment Center are exceptional and take the motto "To Make Man Whole" seriously. They live it every day by the duties they perform, by their concern, knowledge, friendliness and humor towards the patients. I express my gratitude to Him for leading me here. Off to do my daily run....
Wednesday, July 29, 2009. My 45th and final treatment was completed this morning. What seemed like an eternity back on May 26th is now over. Seems hard to believe. The time has passed quickly. I ran a 5k race around the Rose Bowl in Pasadena CA in 32min. 45 secs. this past weekend. Finished 354 out of a total of 710 runners. For me, only having only been running for a month now, I've claimed it as a personal victory. It was exhilarating to have completed it without succumbing to the desire to slow to a walk a couple of times. My time here has been filled with highlights over and above the proton radiation treatments. My youngest daughter Jill inspired me to start running as she trained for her high school cross country team. Usually its the parent that tries to inspire their children. This time it was the other way around. Competing in a Triathlon and 5k race for me, was important in that I wanted to prove that even while battling a serious illness, it was not going to defeat me. Conversely, it inspired me even more, that I was going to kick the crap out of the cancer. I have had the privilege of meeting many great men who travelled this journey with me these past 10 weeks and many friendships were made with them and their spouses. Again, the staff at the Radiation Treatment Center and at the East Campus of LLUMC (who rehabbed my dislocated shoulder) are simply phenomenol in that they truly live the credo of LLUMC "To Make Man Whole". Professional, courteous, humorous, skilled and genuinely caring.
I will head back to Atlanta, Georgia on Friday with the vision of the beige walls of Loma Linda University Medical Center in my rear view mirror. I will think of the sculpture of Jesus at the front of the hospital that I passed each day on the way to my treatment and recall the passage inscribed adjacent to the sculpture, "Come unto me, all ye that labor and are heavy laden, and I will give ye rest". I feel blessed to have found Loma Linda.
December 4, 2009. Four months after my last treatment at Loma Linda University Medical Center and my first post treatment PSA. The results were as predicted by the folks at LLUMC, that is that they anticipate a 30 to 50 percent reduction to the pre-treatment PSA value. Mine was actually 35 percent lower, falling to 7.07 from my initial result 10.8 in October 2008. It's headed in the right direction, but will take as much as 2-3 years before it will reach its nadir. The DRE indicated a soft, smaller prostate gland with no nodule detected. All good news. During the past 4 months I have kept in touch with many of the folks who I went through treatment with. We are all going about our lives...but it has a strange fraternal feel to it..there is a bond. LLUMC has meant something unique to all of us.
I re-read what I had written over the course of the past year and it seems a bit unreal. Physically I feel no different than I did back in September 2008, when I had no idea what I was about to face over next 14 months. Emotionally and mentally, I am not the same person. Life continues but there is a different perspective and a better understanding on what is and should be important in my life. I have adopted healthier eating habits and exercise regularly. I continue to run in 5k races and participate in sprint triathlons. A friend, who I had mentioned that I had competed in a triathlon while undergoing cancer treatment in California is now a triathlete herself and we run many 5k's together. I have convinced a friend who works at LLUMC to train and we will do a triathlon together when I return to LLUMC for an annual checkup next summer.
I continue to try and be a resource for a number of men who have approached me at the PCa support group here in Atlanta (the one I first went to in November 2008 after my diagnosis) or via email, in an attempt to pay forward the support, experience, information and caring that I received while travelling along my initial journey of PCa after receiving the diagnosis. I was also finally able thank the gentleman who first brought my attention to Proton Beam Radiation as being a treatment option to PCa.
I feel great and have had no lingering side effects from the treatment (some minor fatigue in the afternooons for 6-7 weeks after the end of treatment). Looking forward to many years of survival.
Sunday, June 13, 2010 Reflecting on the year that has gone by. One year ago today I was enjoying life in Southern California and had completed 13 of my 45 treatments at Loma Linda University Medical Center - Proton Radiation treatment Center.
My most recent PSA is down to 5.4 from a high of 11 back in late 2008. Physically I feel great, having adopted much better eating habits and continuing routine exercise. Thanks in no small part to the group of folks at the Loma Linda Proton Center but primarily to my youngest daughter, Jill, who was my inspiration to start running while undergoing radiation treatment and I continue to this day to do so because of her. Since last June, I have competed in 17-5k runs, one 10k run and 4 sprint triathlons. Next weekend is a 5k I will run for Prostate Cancer awareness sponsored by St. Josephs Hospital, Men's Wellness Center here in Atlanta. The group that enlightened me to the camaraderie and awareness of men with PCa and its treatment when I was first diagnosed.
I try to select events based on the sponsorship, be it the Alzheimers Association, American Cancer Society, Luekemia and Lymphoma Society or the Susan B Komen for Breast Cancer...running for a reason. I continue to help provide my experiences and any words of wisdom I can to those newly diagnosed that contact me. Giving back to honor those that helped me. I stay in touch with many of the men who I traveled the journey with at Loma Linda. Next month I travel back to Loma Linda for my 1st annual post treatment visit and look forward to competing in a duathlon with a good friend who is the convenor of the PCa support group there. Then there is my first try at a 1/2 Marathon in Toronto in September. The course is along the streets where I spent much time in my late teens and early 20's.
I think the most critical thing that I have learned and am still learning is that life is prescious and is for living and not to get down or discouraged by what life presents you, but to try and go full steam ahead the best you are able and to find calmness, contentment and peace in your life and with those who you hold close.
August 26, 2010 - I continue to get calls and emails from men who have checked out the YANA site and I'm always glad to help answer their questions and specifically questions related to my personal choice in treatment. I always preface it though, by telling them to research ALL of their options before they make their final decision. One man's choice doesn't necessarily fit another man's search for what is right for them.
I've continued to run road races and compete in triathlons throughout the summer and will compete in my first 1/2 marathon in Toronto Canada at the end of this month. The motivation to excercise regularly and in particular, to compete, has largely been the influence of the time I spent at Loma Linda in 2009 and of course my daughter Jill encouragement when she visited California last year.
Hard to believe it's almost been a year has past since I last checked in. Time flies when you're busy.
My last two PSA's in February and May 2011 were 2.2. Despite the stall out on a continued decline, the number is still a positive in that it has decreased from about 11 pre-treatment. Loma Linda had said that they hope that after two years out it would be below 1, but all patients are different, so mine may just be on the slow decline.
I continue to run, swim and bike and compete in road races and triathlons. I still maintain a relatively healthy diet with lots of fruit, vegetables, whole grain breads and cereals. I feel healthy and with the exception of passing blood in the urine in March 2011, for about 16 hours, no other problems. The blood in the urine has not recurred, so keeping my fingers crossed.
Struggling to kick the smoking habit. Finally realized that I cannot do it on my own and recently joined a smoke cessation program. Hopefully I can do it this time.
December 4, 2011 - Just got my PSA result back for post treatment month 28. Down from 2.2 in May 2011 to 1.56. Continuing to go down but the rate of decline has slowed from the first 18 months following treatment. I've projected that I should be below the "magical" 1 sometime late next year based on the current trend.
All other blood test results are good. Health is good and no apparent side effects from the proton treatment. No ED or incontinence. Found out recently that construction of a proton facility here in Atlanta is seriously being considered. Just one more competitor for the "originator" at Loma Linda. The popularity of proton radiation treatment seems apparent with 9 facilities in existence now in the US. Shame on the ill-informed urologists who continue to tell patients that proton radiation is just an "experimental" treatment. After 20 years, when does it stop being experimental in the minds of these supposed learned professionals? So much for staying current in your field!!
Received the results of my latest PSA a couple of weeks ago ...finally down to 1 from 1.56 in November 2011. Results of my recent bone scan and CT Scan ...all good. Good news!! As I said in my previous post, the rate of decline in my PSA has slowed compared to the first two years, but still headed in the right direction.
Just completed my 10th triathlon this past Sunday which marks the 3rd year anniversary of my 1st triathlon in San Bernardino CA while undergoing my treatment. I still feel as good as I did in my 30's and no adverse incontinence or ED issues at all. I'm very fortunate.
I continue to regularly attend the cancer support group meetings I started with when I was diagnosed in 2008. I try and offer newly diagnosed men insights from my experience they may find beneficial while going through the process of "what to do".
March 2013 - After a slight jump in my PSA last September up to 1.3 from 1.0 in June 2012, in January it settled back down to 1.0. After 3-1/2 years out, it doesn't appear that I am going to get below 1.0. A little disturbing since the Dr.s at LLUMC said that they would like to see it drop down below 1 after a couple of years. A couple of friends who went through treatment with me have experienced increases in their PSA's since treatment and it now appears that they're treatment was not successful. Gives pause for thought and realizing what I already knew, that there is presently no guaranteed "cure" and no treatment is perfect. No worries, it is what it is. My oncologist said he sees no need to do anything unless in increases a couple of points. I continue to run regularly and typically do 3 triathlons per year. Ran my first marathon last fall in Niagara Falls, Canada but missed out on doing the New York City Marathon because of the disastrous storm they experienced last November. Best wishes to all.
Sept. 2013 After 4 years post treatment, my PSA finally fell below 1. In June 2013 it dropped to 0.9. No side effects that I'm aware of and I continue to work and lead an active life, running and doing a couple of triathlons this year. I am resigned to the fact that my PSA will likely never go into the undetectable range, but as Alfred E Newman would say, "What, me worry?" No point to worry at this point, but to look ahead to life's next adventures continues to be my focus. I've registered for the Paris Marathon next April and will backpack through the UK and France while there.
December 4, 2014 - Just over 5 years out and my PSA seems to be holding steady at 1.0 for the past couple of years. It has never made it down to the undetectable, so I guess that 1.0 has become my nadir. Feeling healthy, no complaints. Achieved my 5 year goal since leaving Loma Linda UMC of doing a half Ironman in September, my 60th year on this planet, Also managed to do the Paris and Chicago marathons earlier this year. Next year its the Rome and Berlin marathons. Life is good and I thank my many friends and family members for their support over the years.
Hard to believe it's been 15 months since my last report. Not much has changed since then though. Had a PSA and the manual exam earlier this year. PSA down to 0.8, so a slight decrease since 2014 and 2015. While I doubt mine will ever go to undetectable, I still feel great, no side effects and all "stuff" still operating just fine. Continue to participate in triathlons and running events. Since my last report in December 2014, I've done numerous races including marathons in Berlin, New York City, Los Angeles and Rome. Next year it's Houston and Barcelona in 2017. Since my treatment in 2009, I have had the pleasure to talk with many men who have just been diagnosed and/or have started treatment. Hopefully any advice, insights and experiences I could pass along has helped. Best to all of us who have survived and to those men that have fought the good battle and have departed, our loving Lord keeps you in our thoughts.
Hugh's e-mail address is: hha95 AT hotmail.com (replace "AT" with "@")
NOTE: Hugh has not updated his story for more than 15 months, so you may not receive any response from him.