Peter and Prostate Cancer

January 2011

2011-01-22T22:33:00.000-07:00

I had meant to update this blog a little sooner. The news remains very good. A new PSA result, 0.4 ng/mL, shows me to be in a very good place. I feel good and I have not adverse symptoms. I still am on Flomax (actually a generic Tamsulosin). If I don’t take it I have restricted urination but with it is better than I have ever experienced peeing in my life. So I stay on it.

I have received a number of comments asking questions. I am more than happy to respond personally but I need to know an email address.

In the last few months I’ve gotten a series of request for a comparison between the facilities. Please remember I’ve spent a lot of time at Loma Linda three years ago and there have been huge improvements since I have left. At the time of my treatment the hospital said they have spent over $200 million since they started the facility in re-building and refurbishing and modernizing equipment. This was money spent before they had started installing robotic positioning equipment in the gantries.

As you know I also visited the MD Anderson facility and the Florida Proton facilities. Although both are fairly new I know less about them. Not being an expert in this type of technology it is not within my capacity to adequately compare them. That said I could comfortably say the equipment that I saw in all the facilities is top notch. There is an amazing number of people in technical fields, physicist, engineers, programmers, and others besides the doctors to just operate, support and manage these complex systems.

One experience I had when I was visiting MD Anderson gave me great confidence these doctors from different hospitals are working with each other surprisingly well considering they are competitors. When I sat in the patient lobby of MD Anderson doing my due diligence I sat with patients waiting to take there turn in treatment. Although not to frequent, there are delays to the appointed time of a patient’s treatment. Usually it is some sort of equipment malfunction or something that is drifting out of spec. In this case it was a patient who as he entered the treatment room announced he had received a pacemaker the weekend before. The delay was trying to figure out what were the possible effects of having a pacemaker inside the treatment room. The MD Anderson docs were in a teleconference with Loma Linda to figure out the approach.

Although I don’t know what the outcome of the call, I felt very comfortable with an industry willing to talk among competitors to attain the best result. The bottom line to me was it made me feel very comfortable about the attitude of MD Anderson and Loma Linda.

One other thing I did was to listen to a medical symposium held in California in the fall of 2007 (published by Oncolink on iTunes). It was led by the head of the Florida Proton. Doctors and researchers from many proton centers universities gave talks of the issues of proton centers, their medical goals, their attempts at improvement of treatments and what research was targeting for innovation for improved treatments. This also gave me confidence not one of these centers was operating as an island but they were working as a community to bring treatments to us as patients. My final decision was not made on equipment but rather who might have the best institutional experience that I connected with.

July 2010 update

2010-07-22T10:35:00.000-06:00

Its time for a new update. After all it has been over one year and a number of blood test and an MRI. So where do I stand as a result of treatment. As of the last blood test in July ‘10 I’m at my lowest point in PSA 0.5. That is great news and puts me on track for success. Any tests which indicate a nadir of <0.5 ng/ml has low likelihood of returning.

The path to this point was a little nerve racking. I hit the knee in the downward curve of PSA. It went up to 2.0 down to 1.1 up to 1.7 and now down to 1.0. This up and down is quite common for radiation patients. I have to tell you anytime the PSA goes up it makes you think. It made me think enough to go ahead and have an MRI. As it turned out the MRI schedule was just a week after I had the PSA result of 1.0. So going into the MRI I had high confidence nothing would be found. Nothing was.

As I write this it is two months beyond two years since treatment has ended. In those two years I have experienced some changes and all for the better. These came not so much as gradual improvements but in steps. For instance sometimes in January I noticed if I got up at night to urinate it was only once. For a while before that I was starting to get up more frequently at night to the point I was going to say something to my urologist. The peak of that experience coincided with the last rise in PSA. Other changes include higher level of stamina, strength, I feel mentally sharper. I have no answer for the improvements. Other than two guesses.

The first guess is there must be some residual affect of having your body under treatment from radiation. Maybe that is now cleared out of my system.

The second guess is probably more relevant to my feeling of well being. The urologist I have been going is a strong believer in not only managing the disease but also treating the underlying body chemistry which may have promoted the disease in the first place. Every time I get a PSA test I get a pretty good blood work up. The idea is to bring back the blood chemistry to a more normal level. Vitamin D3 was at a very low level, free testosterone was to low, DHEA was too low. All were brought up to more normal levels with just over the counter supplements. And most likely why I feel so vibrant. I actually have the testosterone levels of a 30 year old. I’m 60.

As part of their treatment for many years Testosterone levels of prostate cancer patients have been reduced to unnatural levels. The thought being testosterone would feed cancerous tumors. In medicine there is a growing level of evidence the old thoughts on testosterone may not be correct. After all a young man has the highest level of testosterone in his life. At the highest level of testosterone the incidence of prostate cancer is almost unheard of. For those who are interested in the state of medical thought an easy book to read is Testosterone for Life, by Abraham Morgentaler MD. It’s available through Amazon and most of the main book chains. It discusses the role of testosterone in men through their lives, its affect on energy vitality, sexual function and the possible relationship low levels of testosterone to diabetes and depression. The portion on PCA is only one aspect of the discussion.

In two years concern with prostate cancer has gone from a 100% in your face type of focus to now where I have to struggle to remember by initial diagnostic PSA numbers. It is no longer of prime importance. Life is more normal with everyday issues being more dominant and a disease becoming a thought of the past. It’s a healthier way to live.

One year and One Reunion

2009-04-29T18:26:00.002-06:00

Again it has been a while since I last updated this blog. This week, the first week in May 2009, marks the one-year anniversary of the completion of my proton treatment at Loma Linda.

First an update to my Medical status:
As a refresh I had a high PSA reading of 6.3 and a Gleason of 7 (3+4). The first mark was last August with a post treatment PSA of 1.2 followed by a slightly discouraging 1.3 in January and finally at the end of March 2009 a PSA of 1.1. By all standards I’m quite happy with the results.

If you read the blog you know the only side effect I reported was hesitancy in urination, which Flomax took care of. Last thanksgiving I decided I would try and see what would happen if I stopped. I had been weaning myself off of Flomax by taking pill every three or four days. Usually by the fourth day particularly in the evening and at night if I had to go to the bathroom it would just dribble out.

I must also admit I had a secondary motivation. My lower back ached and thanksgiving was particularly tough. If you are a prostate patient lower back pain is not a good sign. It can indicate the cancer has progressed to the bones of the spine or the pelvic. That was in the back of my mind. However I also knew one of the possible side effects of Flomax was lower back pain. In addition the lower back pain became worse after I played tennis. I had taken up tennis when I was in treatment last April. Truth be know I have a tendency to over do it. At 59 learning a newish sport is not as easy as the last time I played tennis in my teens.

So I stopped taking Flomax. As it turns out it was the right time. Within a day of when I would normally take Flomax the back pain disappeared. My tennis slowly improved and I urinate like I did in my forties. I get up in the middle of the night maybe a couple of times a week unlike the three or four times a night before treatment. Oddly the night stream of urine is weaker than the day stream. I have no good answers for that nor it seems do the doctors. It is however quite common.

Last week was the first reunion of the prostate cancer patients I became friends with while undergoing treatment. The reunion was held in Redlands, the town next to Loma Linda. We had a great deal of fun playing golf, tennis (in my case) drinking to much and telling stories. It was really wonderful to reconnect.

As a group we were fortunate to have Rhonda to instigate and organize the reunion. She is married to Jim who shared the same Gantry 1 for morning treatments. Unfortunately Rhonda found a lump on her thyroid and decided the prudent thing was to go through tests rather than come to Loma Linda and enjoy her hard work. Rhonda as it turns out is doing just fine. The cysts are benign. Interestingly these reunions are fairly common but it is rare to have such a large one. Most are smaller in numbers. We had over thirty people.

The reason to bring this up is in the people who came we saw a range of decrease in PSA. All had decreased to the satisfaction of the doctors. The best was a decrease from 18 to 0.3x. Remember a slow decline is what is expected with any radiation treatment. Within a year or two hopefully the nadir is below 1.0 and an ideal nadir of less than 0.5.

I’ve had a number of people request recommendations, more info, or have questions. If you would like to contact me leave a comment. But PLEASE LEAVE ME YOUR EMAIL ADDRESS. I never mind trying to help. I will always remove all email addresses before allowing the post to be published.

Results

2008-09-13T14:08:00.007-06:00

It has been quite a few months since the last update. Although I had a lot to say about our trip back from Loma Linda it wasn’t really adding a lot to the saga of prostate cancer. This week is different. It marks the fourth month since treatment ended May 8, 2008 and the first major check point.

The only effective way to tell how well treatment has succeeded is to wait about four months for the body to stabilize and heal from the treatment and then measure blood PSA. Thursday of this week I got great news my PSA is now down to 1.2ng/ml from a measured high of 6.3ng/ml. The results are exciting but the best part of it all is I feel good, no tiredness, and no side effects with the exception of an occasional slow urinary stream (could it be a sign of normal aging?). All sexual functions are normal. I now have confirmation things are going in the right direction.

Once having gone through radiation treatment prostate cancer patients will take a few years to reach the lowest PSA reading possible. The target is 1.0ng/ml or less. Those who have the lowest risk of prostate cancer reoccurrence are those who’s PSA reaches a low of 0.5ng/ml or less. This a great start. I had expected and would have been happy with a PSA reading of 3.0ng/ml.

Since I have been back home I have joined the Boulder PCa (Prostate Cancer) support group. I have two clear reasons to join. The first and primary is to maintain and improve the knowledge I have of this disease. The second is to offer my experience with proton therapy to those who are in the treatments decisions making process. With the results I have to date I feel more comfortable championing the choice I have made for its low impact to the body.

In Loma Linda the support group met every Wednesday. Although, clearly it championed proton therapy it was a wonderful place for men and their spouses as well as other cancer patients to share their experiences, problems and just to compare notes of how their treatments were going. There were variations in experiences as there were variations in severity of the cancers. Overall it was a very strong experience to be surrounded by people who in most cases went against the advice of their doctors and against the desires of their insurance carriers. Almost every person who was at Loma Linda was self-referred meaning no referring doctor. As a consequence none felt they were victims – very much take-charge type of people from around the United States and the world.

The Boulder support group is also quite supportive but because they serve a very diverse cancer population the culture is quite different with some stark differences. In the two meetings I went to there were men who were coming back looking for help as their cancers had shown signs of returning. One of these men had quite an advanced cancer stage with a PSA number in the many hundreds. The mix of different stages of cancer brings an aspect quite absent from the experience at Loma Linda - going optimistically through a treatment to an expected cure.

The second aspect of the group to surprise me was the high number of men who have gone or are going through some form of hormone treatment. From my reading and my experience at Loma Linda is to do everything possible to avoid hormones just to avoid the consequences of hormones. Those consequences of chemical castration are really a very unnatural change in the male body's chemistry. The effects are numerous and not very different to menopause. Hormones do have their place. They are used limit the growth of tumors and in some cases shrink tumors until a treatment is started. It does not cure. It’s a delay tactic in the fight against cancer.

Before I left for treatment in California I was advised in Boulder to consider two forms of treatment and not use a mono-treatment. My Gleason score was 7 (3+4), which put me in the range where a dual treatment was recommended, i.e. surgery and radiation, or surgery and hormones, or radiation and hormones were recommended. To be honest I was not looking forward to a dual treatment plan. When I went to Loma Linda I really wanted to test this recommendation. Over a period of weekly visits I discussed with my doctor whether I should do dual treatment. Some of these discussions were more aggressive since I wanted to see if when pushed for dual treatment his advice would change. Consistently he advised against hormones. He saw no benefits in my case and flatly stated if he were me he would not want to deal with the complication of hormones. I was really glad to follow his advice.

Loma Linda is different than most places that treat prostate cancers. It’s a hospital that has all of the options available to it to treat prostate cancer and can choose the best method to treat a patient. Loma Linda has tremendous experience in particular cancer and heart (some of you may remember the first infant to receive a successful heart transplant - Baby Fae treated at Loma Linda). Loma Linda is the number one trauma center for Southern California. So when you are there you become accustomed to the sound of frequently arriving helicopters. Often you see both heliports in operation to bring trauma victims in for treatment. For me it is clear these doctors have a lot experience seeing how their patients do using any of the available treatments.

As you can tell I am enamored with the treatment at Loma Linda. There is one unfortunate downside proton treatment whether at Loma Linda or anywhere else offering these proton treatments. The problem is limit in treatment capacity. Although a number of facilities are coming online as of now I believe the current capacity may be approaching 3,000 patients per year. There are over 200,000 new PCa cases per year. Only a small percentage will find available treatment in a proton center. Those who make through those doors are truly a little different. They do have something special to make it to treatment. I can honestly say it’s not money or influence. If anything it is persistence and desire. I saw patients from every walk of life, from wealthy to poor, from self-paying to those without any wherewithal to make a payment. For me it was consistent persistence.

Fait Accompli

2008-05-13T09:48:00.002-06:00

I had to hold back a tear when I said good bye to the gantry crew. It is amazing how close you feel to these wonderful people. These four had the task of setting me up for treatment every day. After 45 balloons I know putting in and taking out that balloon cannot be a pretty sight. Not only are there very few good looking rear ends in the 60 year old range but sometimes there is a little bit more that comes out then put in with those balloons. I have nothing but gratitude for the work these people do. The truth is most prostate patients are easy to deal with. For the most part we are outwardly healthy without the apparent damage other cancers cause.

Over the next two weeks I have only to re-enter the world, one without the focus of cancer, researching cancer and second guessing my decision. Although cancer is not far away from my thoughts it’s time to put it on a back burner. I do plan to join local prostate groups in the hopes of sharing my experience. In addition in four months I will have my first post treatment PSA test to determine progress in remission. It is expected to fall over the next few years to its nadir, lowest point. In speaking with my doctor the goal is to bring it below 1.0ng/ml. The best place is to have it sub 0.5ng/ml. Any result above 1.0 my doctor felt it was suspect to return at some future date. In one year I plan to return hopefully to coincide with a reunion and a one year follow up at Loma Linda.

It is a fait accompli – the deal is done. You can only pass this way once. Once treated with radiation of any type it is difficult to do supplementary treatments for a reoccurrence. There is no treatment which offers a 100% cure rate for all. During my time here I was surprised how many were here for a secondary treatment following a surgery escape. For some the best solution for post surgery escape is radiation treatment of which proton treatment is one the best. No matter what treatment is chosen the bottom line is to do treatment once so there is a very high likely hood of complete treatment.

One aspect of being in the Loma Linda environment you see guys being treated differently because of the progression of their disease. The milder case similar to mine with higher Gleason but lower PSA received highly targeted protons. Those with high PSA and high Gleason scores were treated with additional treatments in different combinations of hormone and photons. Hormones are used to minimize the cancer growth and photons to radiate a wider area beyond the prostate to kill off possible escapes. The treatment was about 20 treatments of protons and 25 treatments of photons. As patients we were constantly and very openly comparing our treatments successes and failures. Those who had treatment with photons almost immediately had to be concerned with their diet and most had to deal with tiredness. There is a very clear and sharp difference in the impact of the two types of radiation.

In retrospect I came through this proton experience with ease. I had only one side effect hesitancy, easily treated with Flowmax. Each of us reacted differently to the protons. Some had no issues at all but most noticed the hesitancy which was most pronounced starting in the evenings going into early morning. During the day we hardly noticed a problem. Others had urgency – when they had to go, they had to go now. Those with hemorrhoids also had issues. Almost in all cases those who had the photons had the most descriptive complaints which implies they were dealing with worse problems. I know anyone can argue this paragraph as being very anecdotal without statistic. It is however the impression I walked away with.

Today we leave Loma Linda for home. I am not only looking forward to getting home but to the trip home. Since I feel so good we plan to take our time by adding almost a thousand miles to our driving trip. We are going home the long way. We will be California tourist for the next seven days going up the coast with stops in Santa Barbara, Atascadero, Oakland to visit friends we made here in treatment and finally to Lake Tahoe. We expect to be home in Colorado by Memorial Day.

I expect to add to this blog with reasonable frequency but not on a regular basis. If you think a new prostate patient would benefit from this blogs information please let them know the link and ask them to contact me.

Flowmax

2008-05-04T23:04:00.011-06:00

A few weeks ago I told you of one common side effect affecting me, slow urination. I had been treating it with Advil which worked until two week ago. I talked to my doctor about it. At this stage treatment he normally left up to the patient to decide whether Flomax was needed. I filled the prescription. Thirty of these pills cost a little over $100 at RiteAid.

Even though I bought Flowmax I wasn't sure I wanted to use it. After reading the warnings I wasn't at all sure I wanted to take those pills. The potential effects were dizziness so you shouldn’t operate machinery, could cause a drop in blood pressure, floppy iris syndrome (whatever that is) and a possible painful erection lasting more than four hours. Isn’t there a commercial for one of the ED drugs (Viagra Cialis or Levitra) with the same warning? I wonder what happens if you take both Flowmax and one of the other drugs? Could it last for eight hours?

Last Wednesday night I caved in. I took it after dinner. No dizziness no unnatural erection and a very normal pee! Wow works great! When the prostate is irritated, like being zapped by protons, the muscles within the prostate tense and the prostate swells which constricts the urethra. Flowmax apparently relaxes the muscles relieving the constriction of the urethra, so the urine flows more normally. It’s a wonderful feeling to have your bladder empty.

This has been a busy week and somewhat emotional week. Every Tuesday we have a patient’s pot luck and every Wednesday there is a support meeting for the proton patients. Each of the events is attended by a large number of patients and their spouses. At one Wednesday night meeting there was close to two hundred people. One of the common traditions is to have the new patient introduce themselves and the graduating patients each give a short speech. Last week I had tears in my eyes as I listened to some of the speeches and the realization within the next few days we will start to break the bonds we have made with each other as we re-enter our normal lives.

Connye and I started the week with a day trip to Laguna Beach just to look at art galleries.

The next day, we went to visit to the Getty Museum where Connye and I were so captivated with the exterior of the buildings and the grounds we never made it in to see the collections.

Wednesday night we saw one of our new friends off having had his last treatment. It’s gives great comfort when someone who has worked with accelerators all of his working life and chooses of all the available places for treatment the same one I did.

Thursday was a sailing day with Steve and Carol. They were kind enough to invite me along for a day sail south of Newport Beach.

My Brother JP and his daughter spent Saturday going to Bimmerfest a show of BMWs (sorry I forgot my camera in the car) and a visit of Santa Barbara’s Harbor.

Follies

2008-04-26T21:25:00.002-06:00

The treatments are going smoothly - a veritable routine. I start off by going to the lobby on level B early for my appointment. I found I would often be treated earlier if one of the other patients was late which was more often than not. If I didn’t get called it was just fun to get to know the other patient waiting their turn. After a while you start to look forward to treatment just to meet up with your lobby friends. Sometimes you see the patient or it’s the wife of a prostate patient and in one case the mother of the patient.

I had noticed this mom earlier in my treatment. She would sit by herself in one of the corners head down with an empty stroller. That meant her child was being treated for cancer. I knew it must be heart wrenching for her to be there. So I went up to her and introduced myself and asked how her child was doing. I expected to hear the story of a brain or spinal cancer. She floored me when she told me her two year old had prostate cancer.

Kids are often treated for eye, brain and spine cancers which are not easily treated by other means without severe complications. All of the radiation treatments, protons or x-rays require the patient to lie as still as possible when he is zapped. Since children are not capable of understanding the need to be still they are anesthetized for every one of their treatments. In this case of a two year old little boy he had identical treatments to us with the addition of being anesthetized and because of his age had chemo. Amazingly the youngest child I heard of treated for prostate cancer was 18 months old.

I honestly enjoy the patient camaraderie in the waiting room. It is a very unique experience. I can't really put into words but when treatment ends I will miss this connection to all of these people.

This week one of my new patient friends Steve and his wife Carol, Connye and I went to Palm Springs for a matinee and dinner. If you are in the mood for something different you have to go to the Palm Spring Follies http://www.psfollies.com/ check it out. It is one of the funniest stage shows I have seen in a long time. The dancing is very good. The costumes are stunning and the dancers are very sexy. All of the dancers had impressive resume of Toni’s, Broadway repertoire and highly acclaimed careers. Here is the shocker. The youngest dancer is 58 and the oldest show girl is 84, the oldest show girl on record. Sitting in the row 12 you could not only not tell the age nor guessthey were the age they claimed. They danced like very young dancers. Yes, they leapt and did the splits like the young. Definitely worth going!

Dinner was at a restaurant called Johannes. Excellent with good atmosphere. I would go again.

It is hard to believe I have now reached the 80% completion mark with nine treatments left. I am now officially feeling short (short on time in Loma Linda).

Found the Mountains

2008-04-20T16:25:00.001-06:00

As far as treatments go this week is much the same as prior weeks. I have now hit the 2/3 mark. I am zapped every day with little change in routine. Every day has been on time with a few earlier than scheduled. Earlier lets me play tennis which I have recently taken up after a 15 year hiatus. Tennis is a tough game. It requires a lot of precision in timming and control. I am getting more consistant. I'm getting better.

I am now experiencing a side effect of the treatment, slow urinary stream. It's annoying to stand there and wait for it to start and then dribble out. The odd thing is slow urination happens from about 7:00PM to about 5:00AM. Why then? I just don't know. All other times it’s normal. There is no pattern I can associate with food, fluid, alcohol or any other consumption. It may be just associated with the body slowing down in anticipation of going to sleep. Advil helps some but does not really work well. The general reason slow urination is so common is the protons attack everything within the prostate which includes the urethra. If you remember the urethra goes through the center of the prostate. It’s in the direct line of fire. It get’s inflamed. I would also not be surprised if the two sphincters on each side of the prostate and the bladder also feel some of the effect of the protons and become irritated.

The good news is everything else works normally.

Although tennis dominates two days a week it is not all we do. Since Connye has been back we have gone in search of tourist stuff and visits to relatives in the area. I’m really surprised how many relatives we have close to Loma Linda. With each stop we have also tried to find a hike just to make sure we both get exercise. This last Friday we went to Idyllwild where Connye has a cousin and where we also found a very nice hike in Humber Park, Devil’s Slide trail.

Connye at the Devil's Slide Trail head

On Sunday Connye whent to visit a good friend in San Diego and I went up the local mountains to Forest Falls to hike the Vivian Creek trail. The hike was recommended by the radiation technicians on gantry one, the machine I am treated on. It is a kike quite similar to Mt. Sanitas in Boulder. For those not familiar with either trail they are steep with numerous switch backs and take about an hour to get up almost 2,000 feet. It was fun to be outside enjoying the cool air of the mountains. It felt particularly good to not get winded going up to 7,000 feet. I think I am actually staying in shape.

Coming down Vivian Creek trail

Connye's Back

2008-04-12T23:19:00.002-06:00

Yesterday afternoon completed my 26th treatment. Only 19 to go. If there are no machine problems I am on target for finishing treatment May 8. Realistically I expect to be finished the following week. Time is just flying by.

Yesterday Connye returned from her two week hiatus back home to visit with friends from England and to take care of house business.

Not much to report except treatment is going well with no side effects of any consequence. There is one minor effect which most of us feel. The proton beam does affect the prostate and hence the urethra and possibly the neck of the bladder. The effect is to make it a little more difficult to urinate because of inflamation. In my case I seem to be fine with just taking Advil. some have had to take stronger solutions such as Flowmax.

Wasabi

2008-04-05T23:07:00.007-06:00

The hard work of being in Loma Linda is not the treatment. It's keeping up with choices of things to do. Except for the worst case we are feeling very good. I go to the gym about three days a week. Lately I have taken up tennis again. I'm getting tanned. In general I feel great.

One of our new friends organized a sushi class. Connye's brother, Craig, had a chance to join us. We learned more about sushi than I ever though I there was to know. I still don't know enough.

My first sushi creation

That's no guacamole. That is one hot bowl - all Wasabi

Treatment 14

2008-03-25T21:55:00.004-06:00

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

2008-03-06T17:29:00.001-07:00

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

2008-02-26T21:43:00.002-07:00

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

2008-01-31T20:46:00.001-07:00

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

2007-12-26T19:05:00.000-07:00

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

2007-11-30T20:46:00.000-07:00

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

2007-11-30T19:07:00.001-07:00

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.