Added: Fri. Jan 04, 2013 8:48am
The below piece starts off with a posting that I made on my facebook page this morning, and continues into a piece entitled "Prostate Diaries," which I sent to Marc Middleton, the CEO of Bolder Media. I was convinced that I had prostate cancer and indicated to him that I wished to record my journey through the quagmire which is the world of prostate cancer and the daunting choices that patients must make. I think any man with a prostate and any woman who has a man in her life will find something of interest.
If a man lives long enough, the chance that he will have prostate cancer approaches 100% - a rather grim statistic. Many of those cancers will be undiagnosed at the time of death. Another frightening statistic reveals that 1 in 6 men WILL be diagnosed with prostate cancer. My grandfather was diagnosed with metastatic prostate cancer that was so virulent, he was dead three months after his diagnosis. Needless to say, as a young boy, that got my attention and probably the only thing I fear in life in addition to losing at anything, is being diagnosed with prostate cancer.
PSA testing, for various reasons, is rather controversial these days, but I have mine tested annually. Usually, a PSA under 4.0 is considered normal however a so-called velocity (increase in reading) of .35 or more in a year is considered a potential marker for prostate cancer. I had a real scare last summer when my PSA score went from 1.77 11 months previous to 3.61. A reading of 2.12 would have been considered too much velocity – mine more than doubled. I was convinced that I had prostate cancer and commenced writing a loose account of my experiences/feelings entitled “Prostate Diaries.” I went into intense research mode reading 10 books on the subject of prostate cancer and even going so far as to watch radical prostatectomy procedures on the internet. At the end of my research, I think I could have passed the urological boards on the subject of the prostate, prostate cancer and the daunting list of treatment options, one of which is no treatment at all.
One of the books that I read was Dr. Aaron Katz’s book, “The Definitive Guide to Prostate Cancer.” Dr. Katz, a practicing urologist, is the founder and head of the holistic urological department at Colombia Medical School. Among his holistic recommendations for warding off prostate cancer and perhaps enhancing the cure is the taking of daily dosages of two products – Zyflamend & Prostate 5LX (both produced by a company called New Chapter). The former product is the #1 taken herbal supplement in the world I was amazed to discover. I began taking these two products twice a day as recommended and the result was as follows:
Two months after my scary PSA reading of 3.61, my PSA came down to 2.8. I was pleased that it was going in the right direction, but that was still well over a suspicious velocity of my base reading. Two months later, it had come down to 1.91 – now I was starting to get excited. Three months later, on 12-20-12, I was tested again and my PSA was now 1.70 – UNDER THE ORIGINAL BASE READING!!
I would highly recommend the two supplements mentioned above as a daily regimen to all of my middle-aged, male friends!
I have attached the URL to the piece that I loosely wrote and edited entitled “Prostate Diaries.” It might contain some interesting information for men and perhaps the women who care about them.
Today I received the results of my PSA test indicating that it had more than doubled since my last test 10 months ago. Typically a red flag is a velocity (change) of .35 ng/ml over a one-year period – mine changed 1.84 in 10 months to 3.61. I wrote a letter to Marc Middleton today – Marc is the CEO of Growing Bolder Media. The letter explains the situation:
If one were to ask me to name one thing that I fear, I would not hesitate to give my answer – prostate cancer. My grandfather was diagnosed with the disease in his late 50s, and was dead three months later. The symptom that brought him to the doctor was severe headaches, which turned out to be caused by the fact that the cancer had metastasized to his brain (and lungs). It was a very painful death, and towards the end even morphine would not relieve his pain. My good friend and teammate, Dr. George Sheehan, a cardiologist who was also a prolific writer, medical editor of “Runner’s World” magazine and world-class, record setting athlete died of prostate cancer some years ago. I remember a conversation we once had were he opined that our lifestyle probably granted us immunity from cancer. Well, apparently it did not in that I successfully battled a level 4 malignant melanoma 12 years ago, and he was not quite as fortunate with his disease.
I have been meticulous with my diet and supplements such as regularly taking Saw Palmetto, an herb that allegedly enhances prostate health, although as so many nutritional supplements, it has recently been found to be ineffective in prevention of prostate cancer. I have also had annual PSA & DRE examinations.
10 months ago, I was a bit concerned because my PSA reading was a high (for me) 1.77. Of course the “magic” number, which typically causes concern and typically calls for other urological intervention such as ultrasound examination and perhaps even a biopsy is 4.0. Others believe that a reading above 2.5 is cause for concern for younger men.
A few days ago, I received the results of my latest PSA test and it was a scary 3.61. Perhaps the most frightening thing about that reading was the “velocity” almost doubling in 10 months. One school of thought proposes that a velocity of 3.5 ng/ml increase in PSA in a one-year period perhaps might be indicative of an aggressively growing cancer. My velocity was 1.84 - over 5 times the velocity of concern.
The world of prostate cancer is daunting and frightening for all patients. There is no agreement on even diagnostics. Recently, the simple, often quite effective test at revealing cancer, PSA, has come under fire and there are major contingents on both sides of the arguments as to the efficacy of the test. Recently, others have questioned Velocity as a marker for aggressive cancer. There are far too many biopsies that not only result in false negatives but false positives. Assuming however, that it is determined that the patient does in fact have cancer of the prostate, one would think that the patient could then expect accurate, specific and gentle guidance towards the correct path of treatment.
Unfortunately, that could not be further from the truth. There is an array of possibilities from the mild but potentially fatal “watch and wait,” to the most aggressive treatment, a radical prostatectomy which most consider the “gold standard” of treatment. Variations include a “standard” open prostatectomy, or a less invasive robotic prostatectomy utilizing the da Vinci robotic machine. There are also numerous approaches to treatment utilizing radiation from brachytherapy (seeding of the prostate with radioactive pellets), standard radiation treatment (with multiple options from photon to proton), cryosurgery, and chemical and/or surgical emasculation (hormonal therapy). Often times the recommended approach is based on the urologist’s affiliation. For example, mine utilizes the da Vinci robotic surgical technique. The patient is left in a wide-eyed, confused state frantically searching the Internet for guidance and answers, and finds voluminous oftentimes-conflicting information.
To make it even more frightening, Dr. Patrick Walsh, the developer of the nerve sparing technique of radical prostatectomy that bears his name is a rock star in the urological world. He is affiliated with arguably the best prostate cancer care center in the world, Johns Hopkins, and opines that performing a radical prostatectomy is probably the most demanding procedure that a surgeon can perform – not a comforting thought. He goes on to explain that outcomes vary greatly in direct proportion to the experience of the surgeon.
The often lifestyle altering side-effects for all of the procedures can be rather grim including everything from incontinence to impotency - oftentimes both. Even a totally successful surgical result often entails a rather long recovery involving catheters, adult diapers, and too many things to list. I remember reading a book quite a few years ago written by, as I recall, by a reporter who documented his journey with prostate cancer. He utilized one of the top surgeons in the country at Johns Hopkins renowned for his nerve sparing radical prostatectomy techniques. Even with a great end result, it sounded like he spent about 7 months in hell to get there. Perhaps just as frightening, more than a very small percentage of patients suffer a reoccurrence of the cancer either by some being missed during the original procedure or the slowly revealed metastasis of a cell that travelled through the bloodstream to lodge in another spot.
I am being retested on May 25th in that numerous things can cause high PSA readings from recent sex, riding a bicycle, BPH or prostatitis. In that I have done a ton of bicycle riding over the years and in that my urine flows freely, I have a difficult time holding on to some of the potential ancillary causes of a high velocity change in PSA.
The main reason I am writing the above is to tell you that should things turn out negatively, I intend to write a journal of my experience that will potentially be of assistance and comfort to a man facing prostate cancer. Unfortunately, statistically, 100% of us would suffer from prostate cancer if we lived long enough. I would like to use the medium of Growing Bolder to post my story should the story unfortunately unfold. Do know this. If cancer attacks me, it is in for one hell of a fight and I will kick its butt just as I would a fellow competitor’s or that of the young studs that try to (unsuccessfully) hang with me on club rides.
There might be some repetition below of some of the information included in the above letter.
As I await a re-test of my PSA, one of my favorite logic puzzles comes to mind. There is a room with two doors on opposite sides of the room. You are in that room and are told that one of the doors leads to freedom, but the other room leads to the gallows – not a very happy outcome. If you are able to choose the proper door, you are free but an incorrect choice of doors leads to a grisly death. Fortunately, you discover that your fate is in your own hands in that you are informed that there are two guards, one posted in front of each door. You are allowed to ask either one of the guards one question that will enable you to logically discern the door to freedom. There is one unfortunate caveat. One of the guards always lies and one always tells the truth and you don’t know which is the liar and which is the truth teller.
When I was given this problem many years ago, I immediately knew the answer. My ability to use clear logic enabled me to solve the problem and hence allowed me to control the situation. But when control is lost, that is where I have a difficult time, and that is where I fear to tread. [i] (See endnote if you do not know the solution to the problem and wish to see it)
I now find myself in a similar room, but standing in front of the two doors is my general practitioner and my urologist. They both enter the room with my GP bringing the results of my PSA re-take. I have no choices – I have no control. I am afraid and I feel trapped. If my GP comes bearing a positive result – a normal PSA reading, then I will leave through the door to freedom. If he does not, I will exit the other door in the care of my urologist where the world of biopsies, and the apprehensive period awaiting the results which can potentially negatively impact me for the rest of my life.
The third room is the scariest of all. A high PSA but negative biopsy PERHAPS means that I am cancer free, but unfortunately there is the phenomenon of false negatives. If the PSA remains high or increases, another biopsy will be in my future. Now unfortunately, door number one affords only temporary relief, but door number two leads to a fourth room with multiple doors each representing one of the plethora of confusing choices and those choices are dependent on pathology reports, Gleason scores, and the type and extent of the malignancy. Other considerations in the equation include current health and life expectancy of the patient.
With any finding of prostate cancer, a Pandora’s box of choices will be opened, from watchful waiting (being willing to accept the fact that you have an untreated malignancy in your body), various types of radiation treatments such as Photon, Proton, and Brachytherapy. Surgically, one has the choice of two types of open radical prostatectomies one with an incision to the lower abdominal area and the other an incision to the perineal area. There is also robotically assisted prostatectomy. There are other choices such as laser and cryosurgery. All have potential serious lifestyle changing side effects such as incontinence, impotence, infection, bleeding, bowel problems and of course the worst outcome of all - death. Even with great outcomes, continence and potency are often slow in returning and typically do not fully return to their pre-operative function. Often, one is incontinent for months; hence you enter the world of catheters and adult diapers.
Even the choices have branches of choice and considerations. For example, it has been shown statistically that positive outcomes for robotically assisted surgery – the so-called da Vinci Machine – are quite dependent on the experience of the surgeon. Some advise to not select a surgeon with less than 100 procedures successfully accomplished. Dr. Patrick Walsh suggests a minimum of 300 procedures. With radiation, it’s a “Pay me now or pay me later” situation in that oftentimes immediate side effects are less than surgery, but radiation tends to cause issues some years beyond the procedure. For example, urinary voiding issues often appear 6-8 years after the procedure and one’s sexual potency often slowly declines all apparently caused by the residual effects of the radiation.
The latest phenomenon in radiation therapy is Proton therapy, which is probably the most expensive procedure at a current price of around $50,000 - it costs upwards of $200 million plus to build a proton radiation center. The claim to fame of this procedure is that the radiation can be more accurately directed towards the cancerous area sparing other areas from damage typically caused by radiation. Geography becomes an issue in that currently there are only about 10 centers in the country. Physicians are heavily investing in Proton centers with an expectant nice return on investment. The therapy is drawn out over weeks and in my case the closest center is in Jacksonville, FL, which is about a 4-hour one-way drive from my house. There is also the fear with radiation therapy of causing cancers to later appear (by missing some cancer in that prostate cancer is always comprised of numerous cancer bundles in the prostate) and if after radiation therapy, PSA begins to rise again due to missing cancerous cells, radical prostatectomy is no longer an option and the patient is typically then relegated to emasculating hormonal therapy.
With all procedures there is the fear of future PSA increases indicating that cancer is still in the body, and of course 1/3rd of prostate cancers are quite aggressive. For example, my grandfather suffered one of the latter types and was dead three months after the diagnosis of prostate cancer at the age of 58.
Typically, urologists tend to favor the procedures that they utilize in their practice. They each seem to specialize in one approach. For example, I have read books on the subject written by a urologist who has accomplished hundreds of open radical prostatectomies and he has obvious bias towards that, whereas another utilized Cryosurgery in his practice and he favors that procedure and a holistic, nutritional approach to dealing with the disease. One of the treatments I most dread is hormonal therapy where a man is castrated either literally or medicinally. Once one passes through the dreaded second door life can get rather scary and complicated and perhaps the path can lead to a not pleasant death if the cancer has metastasized.
Here is an example of the quagmire of choices – a paragraph from Dr. Patrick Walsh’s book:
What is the best form of treatment for localized disease? This is a major dilemma, because it’s a moving target. There are multiple options: retropubic, perineal, and laparoscopic/ robotic radical prostatectomy; many forms of radiation therapy— 3-D conformal, intensity-modulated, image-guided, proton-beam, plus brachytherapy with or without external-beam radiation, and all of these with or without hormonal therapy. Worse, there are many definitions of success, and study results can vary widely, depending on the stage of the disease when a patient is treated. Walsh, Patrick C.; Worthington, Janet Farrar (2010-08-31). Dr. Patrick Walsh's Guide to Surviving Prostate Cancer, Second Edition (Kindle Locations 6944-6948). Hachette Book Group. Kindle Edition.
Now that sure eases my mind! As an aside, one of the things about prostate cancer that makes it particularly challenging is the fact that typically, multiple cancers grow in various parts of the prostate with the average number of separate cancer bundles being 7. Assuming that the cancer has not spread from the prostate, radical prostatectomy is the gold standard of treatment because it is the only approach that assures removal of all the cancer by removing the complete prostate (and the section of the urethra that runs from the bladder and through the gland).
So here I am back in the second room awaiting my PSA re-test. I am totally not in control of the situation, but must passively await a number on a piece of paper. The potential paths that await me are very frightening. There is only one positive path.
Prior to arriving back to the dreaded room, I have been educating myself on the subject through Internet research and reading of books on the subject. I have read “The Decision,” by John McHugh M.D., a urologist who himself was diagnosed with prostate cancer at the age of 52. He brings an interesting perspective as both patient and surgeon who has performed hundreds of open radical prostatectomies. Another that I have read is “The Definitive Guide to Prostate Cancer,” by Aaron Katz M.D. who utilizes both Cryosurgery and a holistic, nutritional approach to fighting prostate cancer. The most thorough treatment of the subject is “Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer.” Dr. Walsh is an eminent physician practicing at Johns Hopkins who discovered the nerve sparing radical prostatectomy procedure that bears his name.
Unfortunately, when all is said and done, the patient having been plied with an enormous amount of information, is basically left to make a very difficult decision often with no good choices and any direction given by one’s urologist is typically biased towards the procedures used in his or her practice. To a certain extent, I do understand the issues of choice in that unlike many diseases, the proper protocol for any one patient is often quite different from another’s best choice due to the very complicated formulae used to arrive at prostate treatment protocols. There are various tables used to assist in the decision making process such as the Partin & Han tables. To utilize these tables one must have their current PSA and Gleason scores (a way of grading cancerous prostate tumors on a scale of 1-10), and the results of staging of the cancer, which has numerous grades. I am the type who likes to deal in absolutes which is one of the reasons I love mathematics. The square of the hypotenuse of a right triangle is equal to the sum of the squares of the adjacent sides up a hog’s ass. In the world of prostate cancer, the only absolutes are uncertainty, fear, and very difficult choices – often all bad choices.
The unknown is decidedly more difficult to deal with than a known opponent, and unfortunately, I am currently dealing with the former.
For anyone reading this, and excellent resource of information including videos of procedures, seminars, etc, is:
This is the world-famous Brady (Named after Diamond Jim Brady who donated money to found the unit) Urological Institute located at Johns Hopkins, the premier prostate care venue in the world.
Unfortunately, I read a rather depressing book today entitled, “Real Men Get Prostate Cancer Too.” The author, an educator and clinical psychologist decided to participate in a pharmaceutical trial of a drug that had the potential to prevent prostate cancer. It was a double-blind study, so he had no idea as to whether or not he was receiving the test drug or a placebo. PSA tests and DRE exams were administered to the participants on a regular basis.
At the end of the rather long trial, the author was told that he had in fact been on a placebo. Each participant was offered a free prostate biopsy for participating and he decided to take advantage of that knowing that a low PSA score does not necessarily indicate an absence of prostate cancer. On one ill-fated day, the author received a letter from the pharmaceutical company who conducted the trial informing him that his final PSA was quite low and he did not have prostate cancer. On the same day, however, he received a telephone message from the urologist who did the biopsy indicating that he needed to speak with him. It doesn’t take one of super intuition to figure what happened next.
The author did in fact have prostate cancer and a rather large lesion described as the size of the end of one’s thumb. After lots of soul searching and research, the author decided to go with the cure and opted for a radical prostatectomy. He felt wonderful knowing that he was cured as he suffered through the side effects of incontinence and impotence. That wonderful feeling was soon diminished when his PSA score started to rise. It became evident that cancer was still present, so he went through the next full-cure treatment – weeks of radiation. Again, seemingly cured, and hoping that the side effects would slowly diminish, he went on with his life only to have a rising PSA score again – he still had cancer. Further tests revealed that the cancer had metastasized, and unfortunately, metastasized prostate cancer is incurable.
The only thing left was taking measures to slow the disease, which he did through hormone therapy, which turns a man into a woman, but a woman susceptible to numerous ills. He subsequently participated in two clinical trials and now simply awaits either death or a sudden new discovery, the latter being highly unlikely. The book went on to discuss end of life issues – not the most uplifting read I have ever been exposed to!
I just completed the excellent book on prostate cancer, “Winning the Battle Against Prostate Cancer: Get the Treatment That is Right For You,” by Gerald Chodak MD. Dr. Chodak has been a urologist since the 70s and he brings his extensive experience as both a urologist and professor of urology to this excellent, unbiased view of prostate cancer with an in-depth discussion of all current treatment options available for the man suffering from the disease. Unfortunately, as with all discussions of prostate cancer, the patient is left in a quagmire of decisions with seemingly no good choices.
I recently began seeking out all those whom I could find locally who have or have had prostate cancer. The approaches utilized ran the gamut of watchful waiting to a radical prostatectomy performed at the gold standard of prostate facilities – Johns Hopkins. To a person, they are all suffering negative side effects with some suffering multiple side effects. A common thread seems to be impotence and/or incontinence. One patient who utilized the same surgeon as Mayor Rudy Giuliani at Mount Sinai Hospital in NYC has recently begun suffering from incontinence a couple of years out from the Brachytherapy procedure. Another utilizing the same procedure now has a reoccurrence of cancer, which has metastasized to his bones many years out from the original procedure. One patient who travelled to Raleigh Durham to have a robotically assisted prostatectomy by a surgeon who had completed over 1000 of them describes his sex life as “making love with a rope.”
In light of the above it is probably not surprising that the following was in the news last Monday:
CBS News) The United States Preventive Services Task Force announced in its final recommendation Monday that healthy men should no longer get screened for prostate cancer with a prostate-specific antigen (PSA) test because a resulting diagnosis may do more harm than good.
U.S. panel recommends against PSA tests for screening prostate cancer in men of all ages Health experts: Routine PSA tests for prostate cancer not good for health PSA debate: "Some people are going to get killed"
This comes as I am about to undergo a retest of my PSA tomorrow after scoring a scary 3.61 about a month ago with a velocity that more than doubled in a mere 10 months. Next week I will discover if I will be entering the scary world of prostate cancer with its commonly conflicting information and disagreements among the experts. An example of the latter is the not surprising answer to the above statement by the American Urological Association expressing their disagreement with the findings of the United States Preventive Services Task Force.
Got the results of the PSA re-test which probably indicated two things, 1) The first test was not an error and 2) The trending was a bit down with a reading of 2.8, a decrease of .81 ng/ml.
Questions remain unanswered in that there is still the issue of velocity based on my reading of 1.77 11 months ago. I have an appointment with urologist Dr. Greg Diner this coming Tuesday for consultation and a DRE exam.
Today I received a surprise telephone call from Gene Van Vleet, who is highly involved with the prostate cancer support group, Informed Prostate Cancer Support Group Inc., www.ipcsg.org, telephone 619-890-8447. I had recently registered on the website, and apparently Gene personally telephones every registrant to answer any questions they might have. Gene himself is a multiple year prostate cancer patient who has undergone a radical prostatectomy and later radiation therapy when his PSA rose again. After that treatment which apparently did not cure his cancer, he went on a regimen of hormone deprivation therapy, which is his current treatment protocol.
I learned quite a bit from Gene including the existence of the Color Doppler Ultrasound treatment for detecting prostate cancer. In one instance in which a person suffered rising PSA levels for 10 years, but annual biopsies revealed no cancer, Dr. Datolli, of the Datolli Cancer Foundation, ferreted out his cancer, of the Datolli Cancer Institute using this incredible instrument. It is a great alternative, for example, for a patient who chooses active surveillance. Rather than regular biopsies, the patient can be examined using the Color Doppler Ultrasound. Apparently as of this writing the instrument is not readily available in all locations. I also learned of the ICAD enhanced MRI technique used for the detection of prostate cancer. Gene went on to recommend a book on the subject which I immediately purchased and am currently immersed in, “Invasion of the Prostate Snatchers,” co-written by Dr. Mark Scholz, a rare oncologist specializing in prostate cancer and Ralph Blum, a non-medical person with prostate cancer.
DRE examination and consultation with Dr. Eric Diner, urologist. He found nothing abnormal with my prostate and was unconcerned regarding my PSA numbers. He thought that it was promising that my PSA had come down from 3.61 to 2.8 in 5 weeks and recommended re-testing in 6 months. He further indicated that based on Prostate Density (measurement of the prostate in cubic centimeters divided by 10) that he was surprised that my PSA was not higher. Dr. Chan has scheduled a PSA re-test in mid-August.
Amazingly, PSA went down to 1.91. Apparently the regimen of Zyflmend and a prostate specific supplement, Prostate 5LX is working!!
PSA is now down below the original base line measuring 1.7!
[i] The solution to the logic problem is as follows: As either person in front of either door the following question: “Is the person who is lying standing in front of the door to freedom?” If the response is “No,” that is the door to freedom and you may safely exit the room. If the answer is “Yes,” that is the door to the dungeon and you simply exit the opposite door to freedom. I look at the solution as “Go No.” If “No” is the answer that is the door to freedom, if it is not, the answer will be “No” if the other guard is asked the question, hence that is the door to freedom. For example, if the truth teller is in front of the door to freedom and asked the question, his answer would be “No,” because the person telling the truth is standing in front of the door to freedom. If the liar is in front of the door to freedom and asked the question, the correct answer would be “Yes,” but in that he always lies, he would say “No,” revealing his door as the door to freedom. It works the same way if you put either of the guards in front of the door to the gallows. The truth teller would answer “No” and the liar would answer “yes,” hence revealing that the other door is the one to freedom. I wish dealing with prostate matters was this simplistic!
I just finished reading a fantastic book published just 2 months ago entitled, "Prostate Cancer Breakthroughs, A Step-By-Step Guide to Cutting-Edge Diagnostic Tests and 8 Medically-ProvenTreatments." The book was written by Jay S. Cohen, M.D. who was diagnosed with prostate cancer and resisted his urologist's recommendation to undergo a radical prostatectomy. He went into intense research mode, ferreted out the latest and greatest developments in the field of prostate cancer, and was able to deal with his cancer sans surgical intervention. The book is a must read for anyone interested in the subject.