Treatment 14

There is no better way to tell the story than with pictures. I wish I could show you pictures of the behind the scenes of this $150+ millon facility unfortunately I can’t. It is very impressive to know they have the ability to accelerate an object with mass and send it hurtling with amazing accuracy at 2/3 the speed of light into your body. The following pictures are of what I see every day I am treated.


1. Into the changing room

2. About to get into the pod. This is the height of hospital fashion.

3. Comfortable

4. Positioning. I will hold this position for about 2 1/2 minutes while the proton beam is on

5. Move into position. The proton beam will come from the machine directly to my left. The proton beam will enter through my hip and target the prostate just behind the pubic bone.

7. I am just moments away from receiving the daily zap. The beam will pulse on for about two and a half minutes. The beam will come in on the left side and the next day the beam will come in on the right side. This I understand is done to give the healthy tissue a chance to recover and limit potential damage. It seems to be working!

March 6 First day of treatments

First day of treatments


I have started! And so begins the end of the long arduous process of finding a cure for my cancer. The die is cast. I am irrevocably committed to this Loma Linda proton treatment path.

The first day no nervousness, no fear, some concern but committed. As I lay in my pod looking at the very neutral color cone of the gantry, a little beat up from years of use, I think of the other locations I could have gone to. University of Florida looked about the same but the changing rooms were better and include a bathroom. MD Anderson was by far the best show with very bright, clean colors and sharp looking all digital tools. Did I make the right choice? I think and hope so. I am counting on experience making Loma Linda the best solution.

The first day is supposed to be different. It is the day the doctor’s treatment plan is combined with the body to be treated and the gantry to destroy the cancer. A number of x-rays are used to verify the location of the anatomy relative to the plan. Dr. Bush came in to oversee the initial adjustment and modifies them a little bit. The tools were verified using the barcodes marks on them. Interestingly before they were able to start the treatment the technicians had to rescan the barcodes on the tools. It comforting to know the computer verifies the correct tools are in place to treat the patient.

The zapping starts a wheel spins to spread out the proton beams. A Geiger counter beeps. I feel absolutely nothing except the balloon up my butt. What a non-event except……..God I have to pee!!!

February – This is it

I am the medical tourist. This month’s schedule is unbelievable. I am gone on every week on a medical trip but one.

It starts out with a trip to UCLA for a PET scan. Since both of my parents died of cancer I keep wondering if this is the beginning of the end. Not in a depressing way but more curious – clinically curious. I have never been depressed by the prospect of having cancer. I do want to know if I am being smart in treating prostate cancer with protons. I want to know is if there are any other medical problems I need to address – are there other potential cancers?

The PET scan thankfully shows that I am in good shape. One thing does come up is I have a bone spur on my lower spine. It is degenerative with nothing to be done. I’ll have some back aches as I get older.

Since I’m in Southern California I drive the seventy miles from UCLA and arrive in Loma Linda on a beautiful cool blue sky day. In the background the mountains are snow capped, the lower hills are lush green, the streets are quiet almost tranquil and the hospital is a gleaming white. My god! This hospital even has valet parking out front. This is too perfect. There is one hitch. I like this place but it is still a consultation at the end of March with possible treatment start anywhere from one to seven weeks later. I meet the nurse who can’t move up the date. I see no doctors Can I afford to wait until May for treatment???

I really don’t want to go but the next week I go to Houston for my consultation with MD Anderson. The idea of living in Houston from middle of March to early May just is not what I want to do. I still go but once I’m there I change my mind. I am impressed with the vibrancy of the city. Little things become important. I visit a Whole Foods Market and it’s a better store than the store we have in Boulder. Things are looking up! I could stay in Texas.

The next morning I go to the MD Anderson Proton center. This facility shows better than any other proton center I have gone to. It bright, the colors are sharp. It has an advantage of having more daylight in the lobby and a color scheme which is either newer or just doesn’t look as dingy as other high use institutions. I meet with a very competent open admitting nurse. She is open accessible and most importantly, a person who clearly loves her job. Ty is by far one of the best.

The meeting with the doctor is efficient and thorough. Clearly he is a guy who is very good at what he does. After the consultation I am a candidate for treatment and they became a very likely treatment center.

Before I came down to Houston MD Anderson had told me they required a bone scan. A bone scan is used to determine if cancer has spread from the original site to the bones. The way it works is by injecting a radioactive solution which migrates to the bones and is concentrated in areas of greater cancer. A camera, sensitive to this radioactivity, takes a picture of the body and is read by doctor. All other doctors I spoke to said bone scans for prostate cancer are prone to false positives and generally useless for any PSA less than 10. My worse PSA was 6.3.

My real concern is the amount of radiation I'm getting. On top of the bone scan in the last month I had one MRI with a radioactive injection, two CT scan with ingested contrast material, a PET scan with radioactive injection. I know if I go to Loma Linda I would have at least one more CT scan. I also know every treatment day I at MD Anderson I will receive four x-rays or two at the other places. If I didn’t yet glow I was pretty sure I would by June.

All of the treatment start dates from Florida and MD Anderson were going to be the second week of March. I would start treatment at MD Anderson March 12. Florida wanted me to come at the end of February for a three day work up consisting of inserting fiducials as target for the prostate and other associated planning and prep work required for treatment. The start of treatment would be the same week as MD Anderson. I liked the Florida proton center a lot but the distance from home made it less likely I would go. I was not yet ready to cancel one of the accepting Proton centers. Loma Linda was still my backup.

The decision to choose a treatment location is quite difficult each center does thing a little bit differently and one is not clearly better or worse. What the decision was coming to was I was going to go to the center closer to Colorado. I also knew I was choosing centers which had less experience. I knew from looking at my own MRI the cancer was contained, I was in great physical shape so experience which was always preferable may not make a difference in a straight forward treatment.

The whole issue of experience hit home when I went back to MD Anderson on my third day in Houston. I decided to spend a few hours just sitting with the patients as they were waiting their turns for treatment. As I was speaking to a woman whose husband was being treated there was an increase in the number of patients. They started complaining about the delay in their treatment time.

The woman’s husband unbeknownst to the doctors at the MD Anderson had decided to have a pacemaker put in the Friday before. When he arrived for his treatment he announced to the doctors what he had done. The docs and physicist were quite concerned with the potential effects to the pacemaker by the proton beam. As they were trying to figure out the best course of treatment they had a conference call with Loma Linda. Two things were impressive with this. The first is there is willingness between all of these centers to share knowledge. The second was a willingness to care for the patient the best way possible even if it meant asking a competitor for advice. It gave me great comfort to see this in action.

Next we went back to UCLA to listen to a series of presentation by the scientist of the Crump Institute. These guys were developing imaging and research of cancers. I decided not to make a final treatment location decision until I had a chance to listen to any advice from these scientist.

This was going to be a four day trip. Connye and I would go in a day early so we could take advantage of being in California and go to the Loma Linda prostate cancer support group meeting held every Wednesday evening. On Wednesday morning I tell Connye I don’t really want to go to Loma Linda. I figure it would be disappointing if we liked it. After all I was getting very comfortable with the idea of Texas for treatment why would I want to add another variable to the decision process. Connye talks me into going - nothing is quite like the persuasive powers of a spouse.

I call up Janice Wilkins the admitting nurse I had been working with. I ask for the start time of the support group meeting. I am about to hang up I decide to ask her if there is any chance to move up my consultation. I know if I don’t ask I will always kick myself for not asking. “Well…yes” she says “Could you come in next week on February 26 for your consultation and we could make your pod on February 27. “Yes” I say. I immediately start to sweat profusely.

Holy Sh!t! In that one instant my plans have been completely changed. That’s the week I was to go to Florida for their workup. I was now in the perfect storm. Every proton center was lining up for a treatment start the same week. No matter what I decided in the next few days it would have to be final. No backup. I immediately send an email to Florida and make my first cancellation.

That night, in Loma Linda, there is a around a 150 people in the support group meeting. Men with their wives, some men alone some we were introduced just had their first treatment and most amazingly some alumni. Why would people come back a number of years later to a hospital for fun? These people are all open, accessible and more than willing to tell us their stories. The most important question I had was how long was the wait from the pod being made to the first treatment. Every person we asked said one week. The Loma Linda start date could very well be before MD Anderson.

Although we didn’t admit to each other both Connye and I knew we are going to Loma Linda.

January - The Proton Centers Evaluation

I have submitted requests to be treated to three proton centers, Loma Linda, MD Anderson and the University of Florida at Jacksonville. I can only go to one. My initial thought is to go to the one with the most institutional experience. Thinking doctors come and go but institutions develop protocols, institutional experience, which set the limits of what doctors may do. Those protocols also become the facility by which experience is forced on the new doctors.

If that’s the case could I wait for the April consultation at Loma Linda or should I do something sooner? I ask doctors, web forums, an author of a book, friends and my body. Bob Marckini, author of “You Can Beat Prostate Cancer and You Don’t need Surgery”, suggested prostate cancer is slow enough growing you may be able to wait for April. The local doctors said I should make a decision within six months of diagnosis. April was five months. A friend had chosen to follow the Dean Ornish diet and was able to keep his prostate cancer in check for a few years but lately it had become more aggressive. Was I a candidate for a more aggressive version of this caner? I didn’t know but I was concerned.

My body was going through some changes. I would get more frequent burning when urinating. In October on a trip in Turkey I didn’t think I would make it to the bathroom in time. I had started to wake up more than once at night just to go to the bathroom. When I did go often time the urine flow would start and stop which didn’t use to happen. All of this is to say no matter what the source of the urination problem whether psychological of physical lent and air of urgency to start treatment.

The mind is really good at rationalizing. University of Florida and MD Anderson were two proton centers opened in 2006 within six months of each other. Both were well published (experience) and new. Newness means latest in technology doesn’t it? Much better than old? After all you don’t replace $150 million systems very frequently. I make the decision to visit all that would see me, go with the one to show the best and gives me confidence of their ability to treat.

The first to see me is the University of Florida will do a consultation at the end of January and MD Anderson will do their consultation mid-February. Loma Linda after I ask them to see if they can move up calls to say they could see me at the end of March. Hmmm…

This month also marks a change in urologist. This lady is wonderful. The initial consultation is an hour and a half of nothing but information. No DRE!! I got to trust her within a few minutes. When I met with her I told her my plans. She recommended since I was going to Florida I should stop in Sarasota to get an endorectal coil MRI using one of GE’s 3T endorectal MRI machine (I believe that’s a 3 Tesla MRI). The beauty of this machine capability sold me on spending the money for the MRI which insurance didn’t cover.

Without going into detail the information and the pictures generated by this machine is the equivalent to a biopsy of the whole pelvic area. I could actually see where the cancer was in the prostate gland. The best part was I, of all people, could see the cancer and could easily tell the cancer was contained which was confirmed by the radiologists who read the scans. I now new for sure I had cancer. No one and mixed up the original biopsy slides.

I have learned over the years when things go awry listen to what the universe is telling you. The hotel was over booked and had to go to another not as nice hotel. Yeah a minor inconvenience and can be forgotten. Got to the facility was greeted by a most wonderful incoming Nurse. I find out the doctor, Carlos Vargas, had quit starting an independent practice. The consultation went well and the procedure for treatmentwe was described . The first step is a three day work up. Which consisted of all things a further medical examination and scans to set up treatment plans, forming of a body pod to put the body in the same position for treatment and one additional surprise – another biopsy equivalent. Huh!!!

I had assumed all the centers used a balloon to locate the prostate against the pubic bone and move the rectum as far away from the proton beam as possible. Florida does not use the balloon. Instead they believe by injecting water in the rectum they had fewer rectum issues than with the balloon. To find the prostate before treatment they need to put a number of gold markers (fiducials) around the prostate. I have to go through another biopsy equivalent to place the markers. I didn’t like that idea.

Never the less I was not going to write them off yet. The three day work up was scheduled for the end of February with a treatment start around mid March. Not much difference than MD Anderson. Hmmm!! On to MD Anderson.

December decision

I’m in the middle of it. I get confused, clear, frustrated, confused clear. Finally like a week of gray clouds the sun start to peak through as a decision coalesces. There is just no one answer. Every solution has its detractor and supporters. Doctors are not much help.

Prostate cancer grows from cells inside the prostate and start replicating. Some replication occurs spontaneously at other sites within the prostate. The concern, as in all cancers, is to treat prostate cancer before it escapes the organ and metastasize. A surgeon would like to make sure he not only removes the prostate carrying the cancer but any additional cells which may have escaped the prostate. A radiologist would like to treat the prostate with radiation and a margin around the prostate for the same reason.

I spoke with a very talented surgeon at the University of Colorado Medical center who gave me the choice of having him remove my prostate with either the robotic Da Vinci method or conventional surgery. As part of his disclaimer he discussed he would do his best to remove all of the potential cancer escapes but to be sure I may want to consider at some point down the road radiation of the surrounding tissue. Huh! If that’s the case why mess with surgery. Do radiation.

I interviewed doctors of every field, a number of surgeons including cryosurgery, radiologist – beam, Brachytherapy, High radiation implants. I changed urologist and found one I trusted who also happened to offer HIFU as a therapy. I got to the point where I understood the weakness and the brilliance of each approach. Each practice is a means to kill the offending gland either by removing it, freezing it, grilling it (HIFU) or nuking it with radiation. When a practicing urologist at the University of Colorado after a long interview said “…within ten years we will no longer slice and dice and then went on to say “I no longer do radical prostatectomy” and saw the side effects of surgeries I lost interest. HIFU looked promising until a doctor stated 80% of the men do great but 20% do terrible. I lost interest. Radiation looked promising but which one?

To winnow it down further I started talking to those who have gone before me. Email and phone were now busy. I requested information from many treatment centers. I contacted friends who knew someone who had been treated for prostate cancer. I found list of people who made themselves available to help us newbies as well as prostate support forums.

The forums are interesting if you understand them. People who write to the medical forums write to them because they have a problem. Either they need to find out the best way to cure themselves or to solve a serious problem with a side effect. The result is you get to see the worst issues with a procedure, the solutions to deal with the side effect, and the rationale to use a treatment from the optimist or those successfully treated.

What I wanted from this exercise was not a statistical analysis of the problems but to know what were the most problematic problems people had. In another word if I was unfortunate enough to fall into the 1% who did have an issue what was it and how was it dealt with? In the end it was very rare to find one person who had conventional radiation or surgery to come away from the experience with glowing praises. However there was one radiation group which had universal praise for their treatment, those who received proton radiation –now my choice. It was a surprise since not one doctor recommended it.

Proton therapy came out of work done at Fermi Lab in 1946 and Harvard University to turn it into a cancer treatment. Loma Linda hospital, one the USA premier teaching hospital, has provided proton therapy since the early 1990s. I contacted them to find out if I qualified for treatment. The good news was I did but the earliest entry for treatment would be April (I applied in December). Needless to say I wasted no time in sending in my medical information. I received a consultation date of April 7. Wow four months to a possible treatment could I wait that long?

Not being sure I had the time but becoming convinced proton therapy was correct choice. I wanted to find another center to treat me. The second oldest was Boston Mass. I sent them a request but only heard back a couple of weeks later. According to US News and Report the best cancer hospital in the US is MD Anderson. They had a proton center which had come on line I sent them a request. The result was a month earlier than Loma Linda. I also signed up with them.

It is amazing where you find information. Apples ITunes had a medical section which even had an oncologist symposium held in Los Angeles last October (2007) with a portion devoted to proton therapy. It was technical in nature which I loved. It was hosted by the head of the University of Florida proton center. So I sent them an application. I was accepted for an initial consultation in January with treatment start in mid to late February.
Proton was clearly what I was interested in. It offered low side effects during treatment very low percentage of incontinence but a 30% chance of impotence. Treatments lasted 9 weeks which I assumed was equivalent to the recovery period of all other treatments. Although the impotence numbers were higher I had yet to talk to someone who had issues which could not be accommodated with the blue pill.

Worth the risk! So which proton center to chose?

Treatment decision start

Prostate cancer, as previously mentioned, is a slow growing very treatable cancer. The fact it’s slow and treatable means, as a patient, you have time to make a decision the path your treatment should follow. The following is my thought process. Is it the best? I don’t know. It’s what made sense to me. Time will tell. Each prostate cancer patient must reach his own decision. In the end I believe if you have confidence in your treatment and truly believe in its efficacy it’s the best treatment.

With the diagnosis came the first bit of advice. Get a second opinion of the biopsy. I chose John Hopkins because I recognized the name of the institution. As it turns out the biopsy came out a little bit more concerning. A higher percentage of the samples had cancer. The Hopkins doctor, Jonathan Epstein, was recognized by every doctor I showed the biopsy report as an authority. I now new I truly had a cancer. I could not ignore it. One severe enough I could not in good conscience follow a holistic path to treatment. I knew I had to be aggressive in treatment. (Was the biopsy sample being passed around mine?)

Once you know you have the big “C” what do you do? You ask your doctor, the internet and everyone else you know. You just can’t be too proud. The “everyone else” and the internet part are very important. This is the knowledge equalizer. A doctor has a handicap. First let’s give the doc the benefit of the doubt that he is not concerned with his pocket book and is concerned with his patient’s wellbeing. To be a doc he is smarter than most. He has gone to school and has committed his life to becoming an expert in one aspect of treating a patient. If he is a surgeon he may know everything there is to know about removing the prostate from the male body. You know he is so busy during the day in surgery or seeing patients he doesn’t have much time to study outside his specialty. You know that don’t you? How long did it take to get your appointment with your urologist? Yep. You need more sources of information. The bottom line a doctor will recommend what he does best. After all he is good, he chose this solution to practice it must be the right one.

The urologist I had originally gone to did not treat prostate cancer. She referred me to her partner who did. In the two weeks I had to wait for the appointment my world went through a dramatic change. Work did not mater. Prostate cancer knowledge consumed all of my time. One theme came to the forefront to guide my thinking. Prostate cancer is treatable slow growing. All of the treatments have about the same success rate (yes there are percentage differences). All have side effects of varying degree. I decided side effects were my biggest concern, the main ones being impotence and incontinence.

Connye and I looked at what we could deal with. Impotence would be an issue but we could deal with it. Incontinence went to quality of life wearing diapers did not appeal to me in the least. My evaluation of the treatments revolved around those and other less dramatic side effects.

Anatomically god did not design us with any wasted space. The body is a marvel of efficient space management in its design with minimum separation of a few cells between organs, glands and structures. The urinary flow starts at the kidneys. As they clean the blood they extract waste, urine, which is dumped into the bladder. The bladder holds the urine until you can find a convenient time to unload it. The bladder has a sphincter which we have to consciously release to let the urine flow. This involuntary sphincter is located at the neck of the bladder against the prostate. It’s connected to the urethra which goes through the center of the prostate to the outside. Just before the urethra goes through to the penis and out there is another sphincter. This one is voluntary. It’s the one when you really have to go you clench. When the prostate is removed the involuntary sphincter is cut out leaving the one sphincter you lose control of when you sneeze, cough, laugh… you get the message. If any sort of radiation is used the bladder and its sphincter is close enough to get in the way.

Bolted to each side of the prostate is the nerve bundle which gives you that wonderful erection when sexually aroused. The doc when removing the prostate has to be careful to leave behind the nerve bundle, uncut, and with the blood supply intact so things work. If radiation is chosen what hits the prostate also hits the nerves. It’s not a pretty picture no matter what treatment is chosen.

My good friend, Jeff, who went through a robotic surgery, chose it for numerous reasons. The one that stuck in my head was his prostate was large enough he had to self catheterize to allow the urine to flow. Removal made a lot of sense to have normal urine flow. My good friend Roger chose proton therapy because it did not make any sense to him to do something as invasive as surgery. These two treatments because of these guys experience became my focus.

Now comes the interviews.

Start

November 2007

My cancer journey becomes fully formed in November of 2007. Although cancer became a reality early this month I have been dancing with it for almost two years if not longer. In 2006 a visit to a doctor for a possible sleeping problem cancer announced it may intrude in my life. A blood work up was requested to figure out the source of my sleep issue which fortunately included a PSA test. The test came in at 4.5, clearly above the concern cut off of 4.0. This now became the focus of action. As an aside within a day of this initial visit I started to sleep normally.

From this initial PSA report the word cancer was never far from my thoughts. In the middle 1990s a good friend, Roger, was diagnosed with prostate cancer. Like all great engineers, which he still is, his research and thoroughness led him to Loma Linda for successful treatment. His experience was instantly recalled which immediately started the discovery process. I must admit my search for treatment was half baked at best with a lot of denial. After all I wasn’t diagnosed.

The standard next step is a referral to an urologist. At 56 I was considered young for prostate cancer. As I came to learn prostate cancer is generally slow growing so when the doctor suggested we wait a couple of months and redo the PSA it sounded good (a little more denial?).

A few months later I had more blood drawn for another PSA test. It came back at 4.6. My computer started to find more info related to prostate cancer but still I was not too serious. After all someone as healthy as I am with good eating habits doesn’t stand a chance to get cancer! In good conscience I can’t deny nor ignore the high PSA reading. I agree to have a biopsy and it's scheduled. The prostate lies just behind the pubic bone and in front of the rectum. The rectum provides the easiest access to the prostate. Biopsies consist of about a dozen needles inserted through the rectum into the prostate. If the doc is good and uses the equivalent to Novocain to numb the pain then it’s a painless procedure. The biopsy came back negative- no cancer. Dodged that bullet!

Why was the PSA so high? Why would the thought of cancer not quite leave the back of my mind?

Normally as men age the prostate grows producing more PSA. If it is not cancer then it’s a disease called BPH (Benign Prostatic Hypertrophy) or some other infection. It’s the reason why older men have to get up at night to pee or have weak urinary stream. This was becoming truer for me. The doctor thought we would let things ride for another quarter and check the PSA in another quarter which comes back at 4.7. It could be some sort of low grade infection which led me to a month’s worth of a daily dose of Levaquin, an antibiotic.

By early 2007 my PSA had risen to 4.8 which meant the Levaquin had no effect which means I had no infection. I was concerned but determined I would not do another biopsy. At the end of 2006 a good friend, Jeff, had gone in to have a prostate biopsy. Two days later he was in a coma in ICU with septic shock. As a large group of his friends were in the ICU waiting room there was a sense of hope and a real concern a good friend may not make it. Through amazing good fortune, Jeff was treated by one of the few hospitals in the United States to use a new treatment protocol for septic shock. He survived only to find out he had prostate cancer. The message here is anytime someone has to access clean parts of your body through one of the dirtiest bacteria infested area, the rectum, there is a high risk of infection. A minimum of three days of antibiotics should be prescribed.

Under quite a bit of pressure from the doc to have another biopsy I make an agreement I would but only after I have another PSA test in the fall of 2007. I figured if the PSA was close to the same I just and would take my chances without another biopsy . When the PSA came back at 6.3 I knew I had cancer. I really didn’t need the confirmation of a biopsy.

PSA of 6.3 and a Gleason score of 3+4 are aggressive enough. Not terrible but just can't be ignored.