Patient Empowerment – The price of health is eternal vigilance
Both democracy and health care have something in common…their price is eternal vigilance. One of the big shifts in my medical life has been the realization that I am my primary health care provider. Yes, I have many resources around me, various physicians, the internet, support groups, books, etc. My physician is one of these resources. This is different from days of yore pre-internet, and pre support groups. In those distant days, we kowtowed to the physician who was the unquestioned authority.
Feeding the realization that I am the primary person is the realization that my motives are pure. I focus only on my health. The medical system that we have created in the US has been unduly influenced by money. Most of the doctors I have encountered strive to rise above this, but it is hard. For example, if your hospital has invested in an MRI machine, could there be a tendency to overuse it? Our litigious society further complicates the equation. What goes through the poor doctor’s mind is, “ if I fail to do this test, and later the patient has cancer, I could be sued, or even lose my license“ I can’t imagine the pressure they must feel.
All of us, physicians, patients, and caregivers need to be aware of this migration towards patient empowerment. We as patients need to embrace and thrive in this empowered age. Physicians need to recognize this change in many of us and be a player on the team. We patients may at times feel impatient with our physician as they may be defensive about our proactivity, but they too, like us, are in a gradual process of transition. Many doctors with pristine motives are crippled by a medical system riddled with legal, economic issues, and hindered by outdated protocols that are often mired in the past. Most doctors are very good people, but they have no way to escape the Matrix. I don’t have conflict when I am making decisions for myself. My motives are uncontaminated.
How does this evolution of healthcare play out? Let me first share my own story. I have been on AS since 2005 when diagnosed with a gleason 6 in one core of 12. The biopsy was precipitated by my PSA doubling in one year. The path to choose active surveillance (AS) was not an easy one as I had 5 medical professionals recommend a radical prostatectomy (RP). I chose AS —watchful waiting was the accepted nomenclature at the time. The recommended approach, and gold standard at the time was an RP and I expended much anxiety second-guessing my refusal. Those around me thought I was a bit nuts for my choice.
Today ,there is no doubt in my mind nor the medical systems’ mind that I made the correct choice. One of the doctors who recommended intervention was courageous enough to send me a letter five years after recommending an RP, saying I was right. That choice empowered me.
Along the way, I had doctors recommend biopsies as that was the standard of practice to monitor PCa. I was concerned about sepsis (approximately 3% of biopsies result in sepsis). I did my usual risk/benefit analysis, and since my PSA wasn’t rising, I refused and have not had one since 2006. Magnetic Resonance Imaging (MRI) is now viewed as the better protocol prior to a biopsy. Liquid biopsies like Select MDX can also provide useful information. That decision to refuse biopsies further empowered me. That having been said, transperineal biopsies offer a relatively sepsis free alternative.
Another challenge to deal with was the current protocol calling for an MRI with a contrast agent. Prior to my research re gadolinium, I just did what the doctor told me to do, and had several MRI’s with gadolinium. One of those indicated a PIRAD 3 which is a fairly high PIRAD score. The doctor said it was ambiguous, and recommended a biopsy. I did my normal risk benefit analysis and refused. With a PIRAD 3 I would not recommend that. With what I know now I would have a second opinion, or get a micro-ultrasound.
I now have seen studies showing evidence of possible heavy metal deposition from the contrast, so in recent years I chose to refuse the contrast. I have heard that Woman and Bingham’s in Boston and Memorial Sloan Kettering no longer use gadolinium to monitor PCa. Originally, with gadolinium they told us that drinking fluids would eliminate all harmful contrast material. As it turns out that is not true. What seems to happen is that when the experts don’t know, somehow it seems to stretch into “don’t worry.” Why couldn’t they just say prior to the MRI something like, “there is a controversy now over the use of gadolinium as a contrast agent?” We don’t yet know for certain if there are long term side effects. “You may want to research further.”
Another alternative might be to pick up on the Preventive Services Task Force approach re PSA calling for shared decision making. Why not have the decision about the use of contrast be discussed with the patient, so both the doctor and patient are fully informed? Perhaps an informed consent form could be signed?
When I had an MRI without contrast, the urologist agreed that the image was adequate without the contrast. As stated above, some hospitals are monitoring without contrast, although most still use contrast. In fact, the University of Alabama did a study comparing MRI (without contrast) to full MRI (using contrast), and found the latter added little to the detection of clinically significant cancer. That decision to refuse contrast further empowered me. However, if I were a gleason 7 ,would I want a safe contrast? Possibly.
Nor does this notion of vigilance apply just to the medical system. I recently went to the dentist after my tooth fell apart. He said I would need to have an implant. Not a simple procedure and with a cost of around $4,000. I felt there was enough tooth left, so I went to another dentist who put a crown on for $1.000, and I still have the original tooth. I was once again rewarded for my vigilance, and this reinforced the need for second opinions.
The point here is that each time we make a decision that honors us and our informed opinion/intuition, we are empowered. It is when we choose to not do our own research and connect with our own guidance system that we suffer. Doing the research includes extensive reading, discussions with your doctors, sharing your situation with support groups like ASPI, PCRI, Malecare, Answer Cancer, Inspire Community, etc.
Twenty-five years ago, when my father was diagnosed with PC we relied totally on the doctor. The final 6 months of his life were destroyed by over radiation, castration and overly aggressive treatment because he was not an empowered patient and the doctor was our only source. The system snatched away the life of a good man who was vibrant and alive prior to his ill-fated treatment. As an attorney, I had thought about suing, but that is not the way I am wired. Some of you may defer to the medical system as we did 25 years ago. Today you are empowered and no longer need to be in that place.
The side benefit of my bucking the system has been no side effects, no erectile dysfunction, no incontinence, no risk of sepsis, and no heavy metal deposition on my already forgetful brain. Finally, after adopting a plant based diet, and many other experiments along the way, I no longer have detectable cancer. An additional side benefit is that I have saved the medical system much money, by not over intervening.
While ASPI is pro AS, we too are pro necessary intervention. Intervention has evolved tremendously in the past 16 yrs. A friend with a gl 8 had an RP, and was totally continent within 2 days. He also had a nerve sparing procedure. He now on occasion sleeps through the night. Choosing experienced doctors makes a huge difference.
Choosing to empower yourself requires much work. If you are not fascinated with the evolution of health, it may not be for you. If it calls you, you will live life without blame and regrets. The price of your health is eternal vigilance. Not a price beyond your grasp. Be patient. You will find blessings in your prostate cancer journey.
Mark has been on active surveillance since 2005. He is a cofounder of Active Surveillance Patients International. He also is involved with the Prostate Cancer Research Institute.
Mark Lichty revised 12/6/21
The Tale of an Icelandic journey from AS to treatment
My original story was written in February 2019 – Patient Stories Thrainn Thorvaldsson But what has happened since then?
My PSA level rose rapidly. In 2018 my PSA was around 7 to 8. In April 2019 my PSA had risen to 14.3 and I asked for an MRI scan at the National Hospital in Reykjavik Iceland.
I was informed that the finding showed that the cancer had spread beyond the gland. My urologist recommended Da Vinci robotic surgery to remove the prostate gland. The surgery was scheduled in late summer.
A Second Opinion
Meanwhile, I attended a conference in Frankfurt, Germany in July 2019 as the Icelandic representative to Europa UOMO, the Prostate Cancer Organization of Europe, and decided to get a second opinion there. I contacted the University Hospital in Frankfurt and scheduled an appointment and biopsy.
The result was different than in Iceland. The doctor stated that the cancer had not spread beyond the gland but was close to the surface. I asked the doctor if I should accept his finding as the truth or the Icelandic one. He replied and said that he had taken about 3.000 biopsies and analyzed about 5.000 samples. I decided to trust his judgement. This emphasizes the importance of getting second opinions.
However, sampling showed that in one core, there was increasing cancer growth with a Gleason value of 8 (4 + 4) up from previous 7 (3+4) which had been my grade for 14 years. My urologists in Iceland now encouraged me to undergo radiation and Androgen Deprivation Therapy (ADT)therapy instead of radical surgery.
Now I was faced with a dilemma
Should I wait and see how the cancer developed? The tumor had not yet reached a dangerous stage. Would it grow and develop outside the gland? If I wanted to wait, I could expect to have more biopsies later.
I explored radiotherapy and found that my information on radiotherapy from fourteen years earlier was outdated. New technology has completely changed radiation treatment. It had become much more focused than previously. This points up an advantage of using Active Surveillance to defer treatment as the technology advances.
I also felt it was a different matter to go into treatment at the age of seventy-five than when I was initially diagnosed at the age of sixty-one with regards to the quality of life, and the consequences that could follow.
In August 2019 the PSA value had risen to 20.7. After I started ADT treatment the PSA was down to 0.85 in November 2019
Time For Treatment
I had thirty-nine radiation treatments, five times a week most weeks and two years of ADT every third month. I had little side effect during the radiation treatment, but I was tired when approaching the end. Walking daily to build up the strength and drank a lot of water.
My sex drive disappeared immediately. I asked the radiation doctor when I could expect the sex drive to return. His answer was I could expect a return two years after I had finished and recovered from the ADT treatment. I am in the process now having finished the ADT treatment in the spring of 2021.
There was another side effect but a positive one. My prostate shrunk. The size of my prostate gland before treatment was around 100 cc. After the radiation therapy, the gland had shrunk in half to 50cc. Normal size in younger age is 20cc. After the swelling from the radiation had disappeared, suddenly, I was able to urinate normally. What a relief!
My recent PSA measurements have shown a value of 0.04.
My cancer history spans 16 years. It has been instructive, meaningful, and educational. I am pleased that I made the choice to go on the AS journey as it preserved my robust quality of life and offered me much better treatment than I might have had fourteen years before going on AS. I am also grateful to be alive and given the opportunity to use my experience to support other men diagnosed with prostate cancer.