Salvage

I’ve really had nothing to add to this blog until I was shocked by a rising PSA in January of 2017. I had decided that I needed a regular doc not only to establish a doctor-patient relationship but to possibly treat onset of diabetes. As all diagnosis go a series of blood test was discussed for diabetes. As an afterthought, I casually asked her to add a PSA test.

UCHealth (University of Colorado) is really good at providing the information on their patient dashboard in real time but at the same time as the doctors get the info. That evening I got my first notice that new results were in. The first to come in were some of the blood sugar which confirmed diabetes. Then PSA showed up. My world stopped.

In a nanosecond, I went from PCa is not important to the key focus of my existence. Nine years of low PSA numbers had really softened my interest in keeping up with my knowledge of this disease. My main interest was high blood sugar not PCa. In that nanosecond my focused flipped and all the evaporating memories of what I knew came flooding back.

The second time around is different. I’m now in a rarefied atmosphere of very few patients. Information or options and consequently advice is much more limited. Where the first go around there were all sorts of treatment options to now it is limited, less optimistic. All choices  are fraught with consequences which appear to be unavoidable and not good. You look for words like cure but you find more words like abatement or words like maintenance or reduce the size…

What I learned the first time is that help only comes to you when you shake the trees. Friends and family are great resources but you must let them know. It took me a few weeks to wrap my head around this new threat. As the news spread we started getting advice some useless to one that was a surprise from our friend Mike at UCLA.

In Germany, three to four years ago, they developed PSMA Pet/CT scan. What it does I’ll quote from the UCLA brochure.

“PSMA-PET imaging test works by marking an antigen receptor that sits on the surface of every prostate-cancer cell, called PSMA, with a radioactive peptide, Gallium-68. is process allows the cancer cells to be detected wherever they are located, including outside of the pelvic region.”

Since this is not yet approved by the FDA and still in trials it’s not a generally available diagnostic tool. In Germany, they are treating patients with advanced prostate cancer with a similar technology but instead of Gallium-68 they use another isotope to deliver a killing dose to the cancer cell. Although this treatment shows promise there is an element of risk or concern since it is not used for early reoccurring cancers like mine. Only on much more advanced. There must be a high level of risk.

I went through the PSMA Pet/cat scan which was easy except they could not use contrast which would have been a bit better. My creatinine levels were too high and the docs were concerned with kidney damage. No contrast was used. Within a few minutes of the test the docs had evaluated the results with good news and bad. The bad they confirmed the PSA numbers indication of PCa. The good-the cancer was confined to the prostate.

Now its late March. I just had the PSMA Pet/CT scan. I now know I just entered the ring again to face a fight with PCa. What the hell was I going to do?

I kept thinking if radiation worked for nine years and was so benign why not do it again. I call Loma Linda up and see what they could do. They flat out say I can’t do radiation again. I don’t understand why. I ask my urologist and she agrees but adds it will cause morbidity. I accept that but don’t yet understand. After more reading and meeting other urologist I finally understand. Radiation effect on the body is cumulative. The more radiation you’re exposed to the greater the potential for other cancers, like leukemia, to emerge. Any of the radiation treatment are a close balance of just being strong enough to kill the cancer being treated but not strong enough to create a secondary cancer.

By mid-April I’ve eliminated two basic treatments the German treatment because I’m not severe enough and any form of radiation as being too risky. What’s left – Cryo, HiFu, Hormones, or surgery.

Before I go into the next steps let me tell you I feel no effects of this cancer growing inside of me. The exception is that I’m getting up at nights more frequently-every three to four hours. Other than that, all is good except for diabetes. I’ve lost weight which I attribute to the drugs for diabetes. In the back of my mind I’m not 100% sure.

By now it’s the end of April. I know I must get serious about what to do. I look at the options and I know from research years ago not one of the solutions is without great consequences but each would let me live. I know some are more difficult for the docs but I only care about the outcome and resulting quality of life. My number one fear is incontinence. I saw my mother-in-law go into full incontinence. Not one piece of furniture she ever sat in stayed dry. Although I can live without sex I would sorely miss it. I’d like to avoid that. There are all sorts of secondary complications from fistulas, scar tissue that causes pain or it keeps you from emptying the bladder to others I can’t even imagine.

Cryo is almost guaranteed impotence.

HiFu has promise but impotence and scaring are high percentages

Surgery will require more surgery to fix incontinence – that is out.

Hormones is not a cure but abatement with side effects of menopause and makes diabetes worse.

I just don’t like any of the options.

Connye, my wife, and her dad leave for a six-week trip to spend two weeks in Europe to study the end of World War II by visiting Germany and Poland. These two are really historians and love the history of the WWII. This gives me two weeks before I go on a two-week trip to Hawaii.

I go into denial. I go on a remodel blitz of the house that keeps busy building, fixing, and painting from the time I wake up till the time I have to make dinner and bed. Then I go to Hawaii.

Hawaii is fun but there is a dark cloud that keeps it from being what it could be. I think of two things remodel and that I need to find a solution. No solution congeals from all that thinking.

Back in Colorado I finally get serious. I get from my urologist, Dr. Ripoll, for best name in Cryo, Dr. Duke Bahn out of Ventura, CA. I also get the best name for HiFu, George Suarez from Miami.

At this point I’m leaning to cryo even though it’s a 100% chance of impotence.

Once you’re out there looking information starts to come in almost on its own. I start to find out more about HiFu and there are subtle hints of promises of being kinder. I talk to an oncologist from Baptist hospital his recommendations are cryo or surgery in that order. As we talk further he call HiFu as a potential kinder solution. I meet with my urologist. She is adamant not to go with surgery, which she almost calls butchery. Her recommendation was to use cryo or HiFu. Her initial preference was Cryo for the simple reason since radiation is hot an opposite treatment was cold – Cryo.

I’m seduced by the promise of not being impotent with HiFu. I do realize the outcome is still higher levels of impotence but the likely hood of incontinence is low. As of June 20, 2017, I make the arrangements to be treated with HiFu on July 12.

I wish I was more confident. I truly expect to go through a recovery period of a few weeks until the Supra pubic catheter is removed. It’s a catheter that is inserted in the belly just above the pubic bone right into the bladder. That concerns me little. However, realizing I’m out for almost two hours and have to take a host of pills to keep infection at bay, to manage bladder irritation, to kick start erections, Flomax to make you pee. I realize this is not as simple as 9 weeks of proton radiation.

January 2011

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

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

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

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

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

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.