Here's John pictured with his Doctor.
"...and we regret that we are not able to issue a policy."
These are the words that put us on a journey into the unknown world of prostate cancer (PCa) on May 20th 2009. At the time we did not have a diagnosis of PCa, but the words mentioned above from West Coast Life Insurance Co. triggered the events that led to that diagnosis on June 30th, 2009. My previous PSA levels from earlier physicals were slightly high but not alarming. Even my current level is not alarmingly high. My level at 4.02 was .01 above the insurance company's threshold.
What we realize now is that we should have been put on "Prostate Cancer Alert" years ago. My urologist informed me that I am in the very early stages with this slow growing cancer and the outlook for a healthy positive outcome is very good. That .01 was a gift, not a curse. When you have prostate cancer you would rather know earlier than later. Even so, it is still a diagnosis that one does not look forward to hearing regardless of the stage.
At this point on our journey we are at the "treatment options" phase, which we have found out with PCa is not a "no brainer" decision. Fortunately with my early diagnosis we have time to sort through the options in making our decision on a treatment plan we feel is best for our situation. The "we" part of this equation is my wife and myself. What we have found out along the way is that doctors are great allies in this battle, but the ultimate decision rests in the hands of the PCa patient. This is because there is no "clear cut" treatment (no pun intended) for a person with a diagnosis like mine, or perhaps yours (early stage PC and contained within the prostate).
Going in for my consultation with my urologist to get the results of my biopsy, I had already come to grips with the likelihood that I had PCa. Instead of being part of the "1 in 6" men that will be diagnosed with PCa I was in the "1 in 3" camp (my father also had PCa). During my initial exam with my urologist, he found a nodule that he informed me had a 25% chance of it being cancerous. With these factors aligned I thought I was "prepared" to hear the news. What floored me was hearing that surgery was the preferred option for treating my cancer in my stage and at my age. My first reaction was that this seemed pretty drastic. But then again, I had not enrolled in PC 101 yet. I was also encouraged to look into the other options, but the idea of surgery had never crossed my mind.
My father had excellent results with Brachytherapy and that was the treatment I was expecting to hear for which I was an ideal candidate. From that day forward my wife and I have been enrolled in this self-guided crash course in Prostate Cancer research. As many of you have discovered, there is much information floating around with no one treatment standing out above the rest. This is evidenced in the testimonial section of this website: many good treatment options with varying degrees success in the results. We are still in the "undecided" camp with additional consultations and second opinions scheduled. It would be nice if someone could walk up to you and hand you a key to unlock the door to the right treatment for you. However, it is more like a serious game show where you must choose your prize from behind one of the many doors that you have before you. At least in our case the doors are marked. The uncertainty lies in not knowing for sure what results you will have once you go through that door.
This past week I have been looking more closely at Watchful Waiting or Active Surveillance as another one of those doors. My brother recommended watching this excellent broadcast from the UCSF titled: "Prostate Cancer Prevention and Screening: Weighing Evidence to Make Choices." It is lengthy but well worth the time. This is the link to it from You Tube:
This is where we are today: seeking, sorting, and studying the options. What door do we choose? The doors that appeal to us the most are in the radiation camp, with Proton Therapy at the top. Next week we meet with a radiation oncologist at OHSU as week look further into IMRT radiation therapy with the Calypso guidance system. Maybe we will end up in the AS camp. Stay tuned for details.
For now we ask for God's direction in this phase. We know already what part of His plan is for us … and that is that we are to go through this life challenge with Him before us. We already have a great sense of His calling and purpose in this. God has divinely placed a number of people and resources in our path that have been and will continue to be part of our support network with this cancer. Finding YANA was a great discovery in this process in providing a wealth of information. We appreciate all the YANA members and their contributions as we join you on this journey. Thank you for being there with us. I have also started a blog for those interested in following along on my path with PCa.
Later: Since my diagnosis on June 30, 2009, and since my first posting, I have been on the fast track with PC101. I have met with my regular doctor again, my urologist again, and two radiation oncologists. I have been in contact with some of you (YANA mentors), read countless testimonies from this sight, and pored through the resources I have encountered along the way. One thing for sure is that there is no shortage of information with this cancer.
I have narrowed my options down to either PBT or IMRT in conjunction with the Calypso guidance system. However, I did weigh in on the AS camp through the suggestion of one of the radiation oncologists. A comment he made regarding my staging (T2a), Gleason score (3+3=6) and age suggested I was a good candidate for AS. How many doctors have you heard that from?
Like many of you, I lean towards treatment rather than waiting this thing out. As a result, I am in the queue at Loma Linda for my consultation and treatment. I can still back out at the consultation if necessary, but I am moving forward. One thing that sticks out in my mind every time I visit the YANA testimonial section is the lack of follow-up treatment for PBT. There are a lot of blank spaces and low PSA levels. And then when you read the testimonies declaring few side effects it causes you to take notice. I realize it takes time for some of the side effects to appear with radiation therapy whether it is photon or proton, but I have not heard or read any bad experiences from the PBT camp.
The journey continues with PBT (Proton Beam Therapy) beginning September 30th.
Last week consisted of consultations, orientations and planning. I was impressed with how "complete" the path is outlined for you here at Loma Linda. Stay tuned for details! I am chronicling this adventure at one of my blogs.
Even though there was not a significant change in my PSA level from all of my dietary changes and current supplement intake, my cholesterol did drop 33 points! I moved out of the "borderline" category to "acceptable."
What can I say about the Loma Linda experience that has not already been said? December 4th, 2009 I completed my 45 treatments at the James Slater Proton Treatment and Research Center. Back in September that day seemed a long way off. When it was time to pack up our belongings and head home it was a little emotional. So much had happened over the last eleven weeks. Beyond the medical events were the relational aspects of the treatment. Not all of the patients at Loma Linda involve themselves in all the offerings available, but those that do leave a different person than when they arrived.
For me, I left with a confidence knowing my cancer has been treated successfully by one of the countries best medical teams. I also left in better physical shape with the aid of the membership to the Dayson Center. With participation in the two Wednesday support groups the emotional, relational and spiritual needs were addressed. Opportunities abound for nourishing the body, the mind and the soul. Back in September I was not sure what would keep us occupied for our 11-week adventure. I am happy to report the television was not a pacifier for our time spent in Southern California. I kept a weekly update on a blog chronicling the journey, which you are welcome to peruse.
Health and lifestyle changes have also been implemented as a result of the events of the last 8 months. I look and feel better and have more energy. The challenge will be to keep it going. Good health is a good motivator once you have dealt with the "C" word.
"Post Treatment" is the next phase on this voyage. One initial goal will be weaning myself off Flomax. About halfway through treatment I was given this prescription to help with my urinary side effects. I had some frequency and urgency issues before I arrived and they were heightened by the bombardment of the protons. Some days were worse than others but I knew going in this was likelihood. Apart from this type of side effect, my daily "balloon" and the radiation burn on my hips, I would be hard pressed to provide evidence that I was being treated for cancer.
There is a follow-up schedule for periodic exams (DRE & PSA) to be administered by my local doctors that will track the success of the treatment. The first will be in four months and then every six months through the fifth year. Year six and beyond it will be back to a yearly exam. I will post updates as I have them. If you would like to discuss this further or have questions about proton therapy, don't hesitate to get in touch.
The waiting game is over for the first phase of my post proton treatment journey. This marks the four-month point following my last day of treatment at Loma Linda. The results are in as my first PSA reading since last September is officially 1.47. It had been 4.77 when I arrived at LLUMC. I was told that at the four month check point my PSA level should be about half of what it was prior to treatment. It is safe to say I am heading in the right direction. This downward trend should continue over the nest 20 months. At that point my PSA level should arrive at what is called my "nadir" or the lowest point where it will level off.
I have also been pro-active with my diet and lifestyle and lowered my cholesterol level by almost 70 points. In April of last year I was at 233 and I am now at 164. All of this with a healthy low fat diet and exercise.
If you have been following along you have been exposed with me to a whole new lexical world with words like "nadir" mentioned above. PSA used to be an airline company. Not any longer. The prostate gland was a mythical part of the anatomy that only manifested itself when the airline company ran into trouble. When I find myself in a group of people who have walked this same path it is funny how you throw around terms like "Gleason Scores" and you know what each other is talking about.
A year ago I was oblivious to this new language. Like any other foreign language, personal exposure is the best teacher. In order to survive in the hostile world of cancer you learn the language and forge ahead. [The late Robert Young, who was diagnosed in the latter part of 1999 with a PSA of over 1,000 ng/ml, compared a PCa diagnosis to being dropped, without your consent, into a new country with a language, customs, terrain, roads and rules which are all foreign. You are in a Strange Place, and it's frightening.] Part of that forging involves waiting. Had I chosen surgery for my treatment path, I would know now whether or not I am cancer free. But then again I would be dealing with other issues.
For now I am content to watch and wait as I let the results of the proton treatment unfold before me. At least for this part of the journey I know what it is suppose to look like and I am heading in the right direction with no complications or side effects to report. My next follow up will be in six months.
Ten-month post treatment PSA reading today is 0.95. My pre-treatment level was 4.44 and my four-month test came in at 1.47. You do get a little anxious waiting for the results, but when they are what they are suppose to be, it is rewarding.
So far the only side effect has been a little rectal bleeding, which should really be noted as some "blood in the stool." This just happened at the ten-month spot. From what I have heard this is not a cause for alarm. I was told upon the completion of my treatment this was a possibility. It is part of the healing process. There is an area of the rectal wall that was impacted by the protons where new blood vessels are at work. It was there one day and it was gone the next. It may reoccur, but again, it is part of the process.
Other than that all systems are doing well. I am trying to maintain a healthy low fat diet and a workout regimen. This has also kept my cholesterol levels in check. This is another by-product of the total package offered at Loma Linda Medical Center. It gave me a kick in the pants to get this area in my life in order as well.
My next check up is in six months so this posting should be it for a while.
Feel free to contact me if you would like. Being in contact with other men from YANA has been a real encouragement for me.
It is hard to believe it has been almost 3 years since my initial diagnosis. At this point the update is rather boring from the standpoint of "not much to report." But on the other hand, that is what you look for following prostate cancer treatment. [In fact the best kind of update is that there is not much to report!] For this I am extremely thankful.
In looking back I have no regrets whatsoever with the path I chose for this journey. I realize I am still on the path, but I am heading in the right direction with the timeline prescribed for a cure with proton treatment. I should reach my nadir, or lowest point in my PSA readings, at the five-year mark. My next scheduled check-up is not until next Fall. It is also encouraging following my fellow proton recipients progress that are having similar results.
Once again I invite you to contact me if you would like to have a sounding board for your thoughts and concerns as you navigate these waters.
This update will be short and sweet. Today I checked in for my annual physical and once again I have nothing new to report. This is a good thing. Coming up this December 4th I will be three years post proton treatment. My current PSA level has dropped to 0.26 which is still on a downward trend from my original high of 4.72 taken in August of 2009. I have to admit I get a little anxious waiting for my PSA results each time I have it taken.
I am still amazed at how many are unaware of proton treatment even in the medical field. I encourage all to be diligent in your research in addressing your prostate cancer before you make a final decision in the treatment path you choose. For me, I have no regrets.
Another year checked off and no new news to report on the PC side of things as I am about to wrap up my fourth year post treatment. Last month's physical produced good results all the way around. During the course of the year, however, my dermatologist discovered a basal cell carcinoma on my nose that was about the size of a tip of a sharp pencil. I had a Mohs procedure to take care of that little guy this past August. I encourage all of you to include a trip to the dermatologist once a year along with your other annual doctor visits. With that in mind and until I check back in next year: "stay healthy my friends."
Another year post treatment and still no new news to report. It will be 5 years on December 4, 2014 since I had my final proton treatment procedure at Loma Linda University Medical Center. Absolutely no regrets and feeling great. So it is easy to see why I am a firm believer, along with many others, in the power of protons in fighting prostate cancer. I am also thankful for sights such as YANA that have been with me on this journey.
Once again another annual physical with no new news to report. PSA is now at its lowest post treatment level at 0.16 and low PSA's are what you want.
On the news front, six new proton centers are scheduled to open this year in the US while another 10 centers are projected to open by 2018. Needless to say, Proton treatment is on the move as its efficacy in treating many types of cancer gains momentum worldwide. I know in my case, I am a firm believer in this type of treatment in fighting prostate cancer.
Another boring report from me. This year's physical added nothing new to my story. The spring of 2009 is becoming a distant but profound memory. Almost eight years ago, May 19, 2009, I was denied a life insurance policy due to a slightly elevated PSA test result. The biopsy that followed landed me here at YANA. Today's PSA level is hovering at 0.18 thanks to proton therapy.
In my 8 years post diagnosis I have had the opportunity to share my story with many men wrestling with the dark clouds of uncertainty that surround them when faced with a diagnosis of prostate cancer. Here within the community at YANA is a great opportunity to lighten those grey skies by aligning yourself with the real time stories of those who have navigated this path before you. It was here where I found testimonies leading me to clearer skies. I hope it will be that for you as well.
John's e-mail address is: jcsandco AT msn.com (replace "AT" with "@")