Well, what can I say. I was minding my own business just living my life and dealing with everyone else's issues. As they often say, "Life happens while you are making plans."
Why me, what the hell did I do? This happens to older guys. I was planning on cruising through my fifties and enjoying life. Has my body betrayed me? Why do I feel I am walking around with the letter "C" on my suit as if I did something wrong?
When the internal hysteria starts to die down and knowledge and understanding takes its place, there is no reason you can't proceed with some confidence in your treatment and the destination of your life.
That is why this website is the best. That is why I want to add one more nugget to the library so the next club member can benefit from the variety of information and get on with the business of living their lives.
Here is my history lesson. It is unique to me. Everyone arrives here under different circumstances. I discovered my lab results from annual physicals revealed a PSA of 2.8 ng/ml back in 11/2003. DRE was normal and so was everyting else. That is how my physical exams always seem to go. My doctor left me a voicemail and said everything looks fine.
My next annual exam was 4/2005 and my PSA came back at 3.3 ng/ml and the DRE was smooth and normal. My doctor called and said there was some concern that it jumped although it was still below 4.0 ng/ml. She thought a follow-up blood test in 6 months would be wise. I said fine. Now keep in mind at this point I am clueless about prostate cancer and the meaning of any of these values. I knew it was below 4.0, so as far as I was concerned I was in the clear.
I did my follow-up blood work 10/2005 and it returned a PSA of 3.4 ng/ml. I did not know this value at the time. The doctor just left a message and stated everything was OK and we'll see you at the next annual exam.
Now I had not given this anymore thought for an entire year. I made my next appointment as I usually did and got ready for the exercise. The date is October 5, 2006. My exam went pretty normal. The doctor actually complimented me and said how smooth and regular my prostate felt. I don't know if it really was a compliment, but it takes so little to make me feel good about myself. I said good-bye and went off for my blood test.
I hadn't gotten my proverbial voicemail from my doctor for over two weeks and started to wonder what was up. My wife said she would have called immediately if there were any issues. I called the office and the staff all played brain dead and said it can take over two weeks for the doctor to report blood tests.
The following week I just happen to be taking an office day at home when the phone rang down in the kitchen. I looked at the Caller ID and saw that it was from my doctor.
Why is she calling me?... Oh boy, pick up the phone and get on with it. Hello?
"Hi Mr. Poller",...she talked about watching what I eat to keep my glucose below 100, it was at 106. I may want to think about cholesterol medication because I am still up around 220. OK bye,... no just one more thing. Your PSA came back at 4.5 ng/m. I would like you to see a Urologist to get another opinion. There may be an inflamation causing this elevation in the PSA. The urologist may do an ultrasound. Any questions? Of course not, I'm too stupid at this moment to know anything of importance. Click goes the phone and I am on a new highway to somewhere.
My adventure finds me in the Urologist office one week later. Everyone in the waiting room is my senior and I think to myself once again, "What am I doing here?" This is starting to feel like a bad dream. I am eventually directed to my exam room where I wait looking out the 6th floor window.
The doctor arrives and introduces himself. He asks me to remove my shorts and he examines the front and back of me. I wonder to myself, how many more people are going to get to know me this way before I'm done? He tells me to put on my shorts and that he'll be back to discuss things with me in a minute.
The door opens quickly upon his return and he asks me to sit down next to the exam table. He starts, "OK, your PSA was 4.5 which means you have a 28% chance of having cancer. We can do a biopsy next week. You will have blood in your urine, semen and stool for a couple of weeks. Any questions?"
Huh? Do I have any questions? Am I paying for this entertainment? Once again, I don't know enough to ask an intelligent question. I need to stop the clock here. I feel like I'm in a free fall.
I tell the front office gal I need to sort out my schedule for the biopsy. They do them only every other Thursday in the office when the Ultrasound Technician is there. She said to call her and let her know and gave me a slip to have another blood test.
No one ever calls me back about my results so about a week and a half later I call the office to get some feedback. The lady takes about a minute to find my chart and comes back on the phone and says "Your PSA is 7.9!"
I stay cool and say that is quite a jump in just 3 weeks. She hesitates and admits that my free PSA is 7.9% and my regular PSA is 3.6. Well, that makes more sense, but what the heck is free PSA? She said she would have the doctor call me to go over the results.
Well, all I know was that my PSA was accelerating downward from 4.5. All of this was obviously a terrible mistake. I had the momentum again.
I had just returned my rental car in Phoenix when my cell phone rang. Again, Caller ID revealed a call from my Urologist. He was actually very pleasant as he reviewed the lab report. His concern was that the free PSA was below 10%. He still recommended a biopsy as soon as it was convenient. Sensing I was resistant to the biopsy, we negotiated another blood test in 4 months.
At this point in my education, I did know there were a lot of unnecessary biopsies preformed. My PSA was not a slam dunk for a biopsy. The higher PSA of 4.5 could well have been an anomaly. What I did not know at this moment, was that a free PSA of 7.9% took me from the 28% group to the 50% group of having prostate cancer.
I knew I had 4 months to deal with all of this. Every so often when no one was looking, I would google information about prostate cancer. Depending on what site I discovered, I would go to bed very optimistic or desperately depressed with new information. As the weeks went by, I found myself taking a college course as I was researching the internet so much.
It was during this time I came upon this site. This was the first site that gave such a global perpsective of prostate cancer and the culture that exists with it. This site can also be the launch pad for strategies and treatments you might not have otherwise considered.
As the months passed, I found myself assuming I had prostate cancer and proceeded to determine what treatment I would ultimately be comfortable with. I found myself entertaining HIFU early on. $20,000 bucks and off to Canada or Mexico. Side effects seem to be minimal. I was only frustrated it was still years away from FDA approval and possible insurance coverage.
Long story short, after my investigation and the contributions of many folks on this website, I ultimately rated my top three:
- Proton Therapy
- Seed Implantation
- RP - Da Vinci robotics only
I'll be honest with you. No one mentions Proton Therapy. I think it gets lumped in with all the other radiation procedures. There are only (5) centers in the United States and one of them is only an hour away from me. When 90% of the patents using Loma Linda University Medical Center for Proton Therapy fly in and live here for 9 weeks, how lucky am I that I have this resource so close.
Again this site led me to: Proton Bob
Go there and read the patient testimonials. This should be a serious option for every one.
At this point, I am back to reality. I don't know if I have PCa. My strategy is simple. With what I have learned I have been on Vitamin E with Selenium. No sex, alcohol, coffee, 81 mg. aspirin, or serious exercise one week prior to my next PSA test. This should lower my PSA and elevate my free PSA above 25%. Sounds like a plan, right?
It is February 2007 and 4 months later. I go into a lab to have my blood drawn. Regardless of the results, I am ready to make a decision about the biopsy based on the rresults. The results come back and they are PSA 3.9, free PSA 8.6%. With what I know now about free PSA, it would be foolish not to have a biopsy based on the last two lab results. I am comfortable that the results are representative of my chemistry. I call and make the appointment to have my biopsy done.
I am thinking about torture in the world and how did this procedure not get tagged by the UN, Red Cross and the human rights activists. You want al Qaeda members to talk, I would think this would be very effective. All kidding a side, I had 11 samples taken and it was not a painful experience. There was a slight aching in my prostate as the procedure progressed. It was over in about 10 minutes. They use a gel that will numb the area. I thought I had survived it pretty well. The only evidence I experienced that reflected the stress of the procedure was when I discovered my hands were perspiring. I must have been making quite the fist for that to happen. I laughed at myself. I didn't laugh when blood came out of the tip of my penis a few days later. As someone else said on this website, "They made hamburger of my prostate."
At this point, I know somewhere people are looking in a microscope and determining my future. I get the call from my doctor 3 days later just before a business appointment I have in San Francisco. I asked him what revelation he had for me. He told me that I had prostate cancer in multiple samples. He gave me all the data and we set up a consult to go over possible treatments. Don't be shocked. I went into my business appointment as if nothing had happened. I guess I was just prepared for all the possibilities. I was confident that if I had PCa, I had a game plan to address it. This created a real peace within me.
As stated above: 3+3=6/10 T1c Don't worry, you will get to know what all this means very quickly. I hade 4 core samples revealing anywhere from 1%-10% cancer involvement.
I was told at my consult that RP was the Gold Standard. Boy, how many times have I read that comment. I like the part of cutting your urethra in half and sewing it back together. Then how lucky will you be in the return of sexual potency and urinary continence. Will your surgeon have a good day when he works on you? You know it is very technique driven. Will he spare all the critical nerves that make the world go-round? Read the personal stories on this website. Results are all over the map. I got to believe 20-40 years from now, the medical establishment will shake their heads at some of the procedures we perform on our obedient public.
I thanked my urologist for his wisdom. Proton Therapy was quickly mention under the topic of radiation. I also thought, that if I had not had the four months to educate myself, I would have left his office suicidal. No kidding.
I called Loma Linda and they mailed me out their information packet. I put my medical information together and dropped it off in person. I wanted to get acquainted with the drive. It took only a day to qualify me as a candidate and let the insurance company know it may cost them $125,000.00. That's what I was told. I still can't believe that. I will never complain about my premium payment again.
As of today 3/22/07, I am anticipating my first appointment with Dr. David Bush at LLUMC on 4/25/07. There is a little bit of a waiting list to get on this train. Until that update, gee it's been fun.
To be continued ...
The decision was made to proceed with Proton Beam Therapy at Loma Linda University Medical Center, Loma Linda, CA. Again, my conclusion is that this treatment is the kindest to the prostate cancer patient compared to any other current regimen. There is also no compromise in the positve outcomes with this treatment.
Finally, on April 25th, 2007 I met Dr. David Bush, a Radiologist by specialty, and his nurse/case manager, Gail Verrecchio. We basically reviewed my history and treatment plan. The comment I really appreciated was when Dr. Bush stated, "We'll take as much time as necessary to answer all your questions." Nice touch. I know my case is nothing unique, but he wanted to make sure I was ready to proceed. There was still time to bail out if I was not ready. I assured him that I wouldn't be here if I hadn't done my homework!
Dr. Bush was still up front and stated that there was a 90%-92% chance of success on the first pass and a 30% chance of potency issues one year after treatment. Unlike surgery where one waits to recover in the subsequent 24 months, it is my understanding that 30%-40% of Proton Beam Therapy patients experience various levels of impotency 9-12 months after treatment. Again, this outcome is affected by age, previous issues and level of disease. As with any treatment, how you respond is still a very unique journey for each individual. Did I mention that there is a less than 1% chance of any incontinence being experienced? My final question to him was, "Is there anything I am not allowed to do while going through my treatment?" He quickly responded, "Absolutely not."
Just as a sidebar. I did have another PSA. It was back up to 4.5. This is where I started 6 months ago. In the last six months my PSA was 4.5, 3.6, 3.9 and 4.5. I wonder how much these numbers can jump around? Regardless, the biopsy revealed there are cancer cells and that is the reality.
I show up the next morning for my mold fitting and cat scan. Positioning is critical for the proton beam so a mold of my backside will ensure the same postition of my body for each treatment. Aside from my prostate, they will radiate a 1 mm. margin beyond the prostate gland. Next stop is the cat scan to map out how my anatomy looks. I had to drink 16 oz. of water. A full bladder helps to separate the prostate from the bladder. I then had a rectal probe inserted with a balloon that was inflated with water. This separates the rectal wall from the prostate. Keep in mind the prostate shares a common wall with many other organs. The cat scan takes an image of this and the mapping of the treatment can be done. Listen, if you can survive a biopsy, this inflated ballon in your rectum is nothing difficult to tolerate. Nevertheless, I have become a member of the "Brotherhood of the Balloon." You can visit the website of this special group of men.
I also have some financial notes. I said earlier that the cost of this treatment is $125,000.00. That seems to be the retail price. The hospital can of course negotiate with insurance carriers and have established a treatment price with my Blue Cross/Blue Shield of $44,000.00. I was told a cash only patient could get the treatment for $37,000.00. Again, just what I heard. I don't have any of this in writing. Don't let your insurance company say it is too expensive compared to comparable therapies.
My start date is May 16th, 2007. I will have 44 treatments. These are half-hour sessions. All the glorious details will be shared with you shortly.
Well, here I am on the other side of the mountain. I have made many decisions and I have experienced many emotions. I can truly say that as of today, I am very satisfied with my decision to proceed with the Proton Beam Therapy. I am still amazed how many men still choose the surgey route. I still go on many chat rooms and read the sad stories about the many complications that surgey patients experience.
Regardless, I want to share my treatment experience with you in hopes that you have enough information to come to the decsion you are confident to proceed with.
I began my treatments on May 16th, 2007. My last treatment was on July 26th, 2007. I was scheduled for 44 treatments which is pretty much the norm. I lost about 4 treatments due to equipment issues. This is normal and everyone should calculate about a 10% down-time rate in their treatment plans. I personally cancelled three appointments myself due to work related issues. The staff in the Radiation Department were very accomodating.
The first two weeks my appointments were all over the place. I had appointments from 9:30 in the morning to 9:30 at night. After that, I got the time I wanted which was @1:00 PM everyday. This worked best for me because I am a commuter looking at a 50 minute trip. Earlier or later would invite serious traffic issues. Just a note: these folks are open from 6:00 in the morning to 10:00 at night. They have four rooms they call Gantrys. They are doing about 150 patients during the course of the day. For the most part, they are on time, but as you know things do happen and one could wait 30-60 mintutes to get in.
Appointments are actually scheduled in 15 minute intervals. You take the elevator down to the B Level and try to be there 15 minutes early to allow for your wardrobe exchange. I would travel down the hallway to the locker room, select a key from an available locker. There would always be other guys coming and going and it was great. We all had something in common and we were all on the same team. Funny how that works. Anyway, there were two little dressing rooms where one would change into a surgical gown. Again, very important,....always opened in the back!
So I would wait there in the locker room until I was called into Gantry 2. You will always have the same Gantry for your entire treatment. As you enter the treatment room, there is your own personal POD (mold) that you lie yourself into. There are usuall 3-4 technicians setting you up for your treatment. They install your custom aperature and bollus to direct the proton beam to the correct depth and shape of you prostate. You will have one set for the right side and one set for the left side. They alternate sides each day to balance the beam between two differnt entry points.
At this point you may feel you need to go to the bathroom. You see, your supposed to drink 16oz of water prior to each treatment. If your bladder is full, it will help to separate the walls of the prostate from the walls of the bladder and rectum. There is one more item needed to help separate the common wall shared by the prostate and the rectum,....time to meet the "Balloon".
Yes, I was violated 44 times. They insert a well lubricated probe 3-4 inches into your rectum and then inflate it with 4oz of water (120cc). Now I was all pumped up, so to speak. The folks here are all professional. Personally, I don't know how they do this 150 times a day?
Some guys seem to tolerate this better than others. I would often disgust my buddies by telling them I was beginning to enjoy it. Just a joke, really,.....
A quick x-ray is now in order. This helps to position you correctly in the POD. You see, even your prostate moves around a little bit.
The techs would then leave the room and the radiation beam would begin. The actual treatment took 60-90 seconds. No pain, no sensation, absolutely nothing. I often thought to myself, is anything really happening here? This must be a scam like growing hair on bald heads. I can say that since I am bald.
At the end of the treatment, everyone comes back into the room to start preparation for the next patient. The balloon is deflated and removed. At his point, I say my farewells and make my proverbial journey to the restroom. There I relieve my bladdder and wipe up after any resudual lubricants. Feeling almost like a normal person again, I changed back into my real clothes and walk out of the hospital. As I walk by the many people, I know they have no idea of my little secret. I have prostate cancer and I get a balloon inserted in me every day.
Now, lets talk about the side effects.
FATIGUE: Experienced by many at a variety of diiferent levels. For me personally, I can't say this was ever obvious to me. I referee soccer on the weekends and I maintained my normal schedule. I did not cut back on my activities.
FREQUENT URINATION: Some say they get up 2-3 times a night to go to the bathroom. This never happened to me. I did experience an occasional urgency. I also experienced a weaker stream. My doctor told me that this happens due to the possible swelling that is occuring.
POTENCY: Again, this is not an issue. I did experience a little "Angst" in that maybe I should not do anything during treatment. That is strictly psychological. Dr. Bush reminded me that there are no limitations during treatment. I will say that there was for some time a slight ache after orgasm. The real side effect was a gradual decrease in ejaculate. When I realized this was going to be a permanent reality, I couldn't help but be sad a little. The total experience was changing permanently. Ultimately, any other potency issues still await 30% of proton patients 7-10 months down the road. These 30% can experience different levels of potency issues.
Obviously, the goal is to be cured of prostate cancer, not become a sex star. I am scheduled for my next PSA in four months. It should be about 50% of my current PSA of 4.5. I will let you all know what's going on then. Feel free to email me with any questions. Cheers!
Well it's been four months since the end of my treatment. I went to my scheduled follow-up visit at Loma Linda University Medical Center. I met with Dr, Bush to review the current state of affairs.
Current PSA is 2.3 ng/ml. No side effects from the treatment. Next visit in 6 months. I will have a prostate exam and another PSA. The short term objective was to get the PSA at 50% of the starting PSA which was 4.5 ng/ml. It may take 12-18 months to get it under 1.0 ng/ml if not below 0.50 ng/ml.
Again, I wish all cancer treatments could be this painless and symptom free. It has been about a year since I started this adnventure. I must say the emotional trauma has really been minimal and my life has not changed one bit. No one can ever tell me this is not the best treatment choice. See you in six months.
Well, hello again friends. It has been one year since the start of my treatment. My PSA is now 1.6 and I am having zero, zilch, nada side-effects.
If you are reading this, why are you considering anything else?
Just had my 3rd follow-up visit, which are now in a 6 month interval, on November 24, 2008. My PSA was .99. The goal is now to drive below the .05 threshold.
I continue to have no side-effects from the treatments and all systems continue to work normally.
Just had my six month follow-up at Loma Linda. It has been almost (2) years since the completion of my treatment. I am now at PSA 0.55 and have suffered no set-backs or subsequent systems. I am sorry, but I have nothing to complain about.
See you in six months
Just checking in. I had my sixth month exam in December 2009. It has been 2 1/2 years since the end of my treatments. My PSA is 0.41 and I feel great with no side effects.
Back again with my six month check-up on June 7, 10. It has now been three years since my treatment.
A little surprise this time in that my PSA jumped from 0.41 back to 0.74. Dr. Bush was not concerned and told me to come back in (6) months. I on the other hand said I will see you in three months for another PSA and see what direction we are headed.
Bumps like these are not unusual and this small a number can be effected by many factors. Other than that, no side effects from treatment. I can't believe its been three years.
I had my quick 3 month follow-up and my PSA came back at 0.51. So it is down from the 0.74, but not lower than my best at 0.41. Dr. Bush stated that I may well live in a range of 0.40-0.80. That may ultimately be my nadir. It seems that as long as it stays below 1.0, no one is really concerned.
I want to remind all of you that it has been over three years since my treatment and I have experienced no symptoms from the radiation. I continue to be amazed how many men continue to follow the path of surgery, even robotic, and deal with all the challenging post-op issues.
Talk to you later...
Had my follow-up visit March 15, 2011. PSA came back at 0.60. Seems to be really leveling off in this area.
See you in six months.
My treatment journey has entered the next phase. My recent PSA in September came back at 0.31. It has been 4 plus years from the end of my Proton Therapy. Dr. Bush recommended that I now go to an annual follow-up regimen vs my current 6 month cycle. I was somewhat surprised that my PSA dropped again after leveling off.
Had my first annual follow-up now that I am on a yearly check-up cycle. My PSA is now .29 and I am feeling great with no side effects from my treatment. I am told that if there were going to be any side effects from the proton beam radiation, it usually manifests itself in years 2-3.
Had my annual exam. PSA hovers at .30 and have had zero side effects since the beginning of my proton treatment.
Had last physical exam by my GP on 9/18/14. PSA maintains at .30. No side-effects.
Just jugging along and all is well. I am not going to Loma Linda anymore. I just have my PSA done during my annual physical with my GP. This experience moves farther and farther into the past.
Time for another annual exam. PSA is 0.30. All is well.
Reinhard's e-mail address is: firstname.lastname@example.org