THE ROAD LESS TRAVELED
written by a prostate cancer patient who wants to be anonymous (posted by me on his behalf.)
Most men if they ever think about their death presume it will be fast and painless. A PCA diagnosis can shatter that presumption. From age 70 to 73 my annual blood work showed an increasing PSA triggering a referral to a urologist. An MRI scored Pi-Rads 4 . A subsequent multi core transperineal biopsy surfaced 5 cores of Gleason 4 + 5 and one of 5 +4 . Since many men who first present with a Gleason 9 when in their 70’s may have been harboring that cancer for years , the urologist ordered a sodium fluoride bone scan to rule out skeletal metastasis. A technician at an Imaging Center administered the test and I was told the Center had contracted with a large radiology group to read the images and my reader would be a former professor of radiology at Harvard skilled at reading these scans. The report was emailed to me and said I had extensive skeletal tumors in the spine, left femur, coccyx and right humerus. My 4 children were then adults with their own children and we convened a family meeting and my wife and I gave them the report. Not a happy time.
When I spoke to the treatment specialists, they said I should get a second and third opinion on my bone scan. So I did . And both of the second and third readers said the first radiologist got it wrong. What he was calling bone cancer was arthritis. I then got an choline scan at Mayo Clinic to check for visceral mets. There were none. The MSK nano grams indicated no matter my treatment choice, I should expect recurrence. While a recurrence did not necessarily have to be systemic, it could be one that was treatable and curable, I had little confidence given my age that a recurrence would not then or later be systemic. So by the time I chose a primary treatment I had decided I would be ” one and done. “. I chose irreversible electric proration, went on Crestor, Metformin and Advoart, and contrary to protocol decided I would never thereafter check my PSA or be scanned until and unless I was symptomatic .To voluntarily subject myself to the anxiety of testing and then begin treatment upon recurrence was to me a non starter. If I was age 45, when my 4 children were teenagers, I would have castrated myself and severed my left leg for a chance to mentor them to adulthood. But I was then at a different point in my life. My children were well settled and I was blessed with grand children. My wife would miss me , but temperamentally , financially and with the support of our family, she would do fine. I had joined a PCA support group that I teasingly dubbed ” The SOC Fraternity” and when I told them that I was leaving the group and was not going to test , they were apoplectic. They believed that I was suffering PSTD from the bone scan’s false positive and I was making a major mistake by “putting my head in the sand”. They challenged me to think through my decision and said before I went solo It would be in my best interest to dive deeper into the literature and then come back and make a presentation that , they speculated the mere preparation of , would reveal to me my folly. This request to assemble and present my thoughts on why I was choosing not to monitor my PSA was good advice . While the intention was for me to reverse course, It made me go much deeper and broader than I had previously done and fortified, not undermined, my decision. So this is my presentation of five years ago with some current edits.
I AM NOT AFRAID TO DIE.
Absent a lifestyle that engenders morbidity, the evolutionary forces from the beginning of mankind through our ancestors to our birth, which I call ” Mother Nature” , have programmed our expiration date. When I was born in 1943, my life expectancy was 67. 5 years . I have already beaten Mother Nature’s husband Father Time by 6 years. I have had a great life and am grateful for the time given. If I have to give it up tomorrow, I will.
WHATEVER YEARS I HAVE LEFT I WANT TO THRIVE .
I would happily have stents placed in my arteries if unclogging them would prolong my life . But the antidote to remit prostate cancer is not a two hour surgery and a return to normal. If my cancer returns it will likely be systemic requiring systemic treatment by chemotherapy and castration. Oncologists say those treatments will extend my life and they certainly could.But the extension of my life is secondary to me living life as I have known it.
CANCER IS ONE OF MOTHER NATURE’s WAYS OF COMPLETING THE LIFE CYCLE.
We were born to die, not live forever. Cancer has been the death default if man survives famine , wars, accidents and other diseases. Mother Nature wants us gone to preserve the earth’s resources needed to nourish the next generation . If man lived forever the planet would be consumed by its inhabitants. That is not what Mother Nature intends.
CANCER CELLS ARE PART OF US.
PCA men often liken their cancer to a foreign enemy who suddenly penetrated their personal ecosystem to kill them. They then cast themselves as warriors trying to defeat this common enemy they call the beast. But prostate cancer is native , not foreign, and while common in origin it is very heterogeneous, which is why a treatment that might work for one man will not work for another. If one wants to use a war metaphor to describe prostate cancer it is internecine since our own rogue cells kill our healthy cells. And if one wants a simple explanation to an enormously complex biological process I offer this: We were born with billions of cells. Unbeknownst to us , a subset of those cells were genetically programmed to begin dividing uncontrollably. The time from birth to when they go rouge varies based on our specific genetics, lifestyles, and just bad luck. Some will “hit go ” in 40 years, others in 90 years. The older you get the more likely yours will hit the programmed launch date. Once launched, our immune system does not recognize them as killers since they had been masquerading as normal. Once they take off and get up to speed they colonize in various locations, establish a blood supply, and then proliferate into multiple tumors . I inherited these cells from my ancestors who probably died from something else before their cancer cells were timed to wake up and kill them. I lived long enough for them to erupt and want to kill me. In life , timing is everything.
CASTRATION IS CONSEQUENTIAL.
Castration , or testosterone suppression, while traditionally used only for metastatic cancer is now commonly used for unfavorable localized or locally advanced cancer adjunctive to primary treatment. Since patients are now confronted with a recommendation to castrate early when they are still stunned by their diagnosis , it is important they push pause to understand the consequences of castration, particularly since its efficacy for their cancer type is then unknown. Testosterone is the biological , chemical essence of man. It is the hormone that regulates libido, bone mass , fat distribution, muscle mass and strength , the production of red blood cells and improves cognition. Because it is key to a mans overall health, only nine states permit the castration of violent sex offenders . Forty one others consider it barbaric and ” cruel and unusual punishment”. Most of the nine states permitting castration administer Dep-Provera ( DP), an FDA approved injection for female birth control . DP contains the hormone progestin which when injected into men reduces testosterone. Most people have no moral qualms about chemically castrating a violent sex offender if the only effect is the loss his sex drive. But because DP has other biological side effects the impact is far greater than just reducing the sex drive. Thus, forcing someone to take a drug with a significant collateral impact is a whole different moral and legal proposition. If a sex offender subsequently dies from a heart attack after sustained castration, the penal system, not the judicial system, will be deemed to have condemned him to death , which would be patently illegal. The side effects of a DP injection are similar to the effects of a PCA man using estrogen to self castrate instead of an agonist like Lupron. Estrogen based treatment has long been considered inferior to injecting Lupron. It is being resurrected, however , as a PCA treatment , because it is now transdermally applied and the side effects are less damaging than Lupron. Here is the irony. DP , which is chemically similar to estrogen , and its lower side effect profile, is forbidden by states on the grounds it constitutes cruel cruel and unusual punishment. Lupron, a far more damaging drug , is used for castrating PCA men. If DP ( Lupron Lite) is forbidden to be used on a sex offender, it is fair to challenge the wisdom of using the stronger Lupron on older PCA men. For reasons discussed below, when a man is first diagnosed, oncologists may know the cancer’s grade and location, buts its amenability to being arrested by chemotherapy and castration is a shot in the dark. What is better known are the possible negative effects of those treatments. Thus, the ultimate efficacy of these treatments will not be known till once deployed but the harm may be consequential. This discussion on castration makes clear why the word “castration ” has largely dropped out of oncology’s lexicon. The oncology community gets a Madison Ave. award for relabeling castration as ” Hormone Therapy” or ” Androgen Deprivation Therapy”. Those terms make it seem as if you will be taking a whirlpool bath at a local spa. The profound negative effects of Lupron are to be expected since It eliminates testosterone which enables all the critical functions listed above. As stated , if I was 45, and fully informed, I would inject it because there was a transcendent purpose. Said simply, this is not a therapy. It is a fundamental alteration of your essence in an attempt to extend your life for an uncertain duration. Understand what Lupron is, and castration does, not what you may be told.
BE YOUR OWN INFORMED ADVOCATE.
Support groups, blogs and other forms of patient engagement are wonderful venues for men to learn more about their cancer. They are also a refuge of encouragement, optimism, concern and consolation . When the going gets tough, no man will lack for support. But peril lurks whenever you have a group of untrained men chatting about an enormously complex disease that has baffled trained scientists for generations. Every day men post stories how one or multiple non approved medicines or unregulated supplements mediated their cancer and in their exuberance become champions of their discovery. Most of the stories are non scientific anecdotes . And all of them confuse correlation with causation. The pitfall is they can unintentionally cause desperate men to spend money and ingest pills that might be harmful, not beneficial. And even if one stays within the boundaries of the mainstream oncology community, there is no substitute for continued due diligence. While oncologists can assess and stratify prostate cancer at diagnosis , the unique biology of each man’s cancer is unknown. Treating prostate cancer is an iterative process where the response to each treatment reveals the cancer’s amenability to , or resistance to , that treatment , and suggests another treatment. And if a treatment remits the cancer, the durability of that remission is unknown. Thus, oncologists define cancer by which treatment does not work, or works and later fails. So we have the chemo resistant cells, the radiation resistant cells and the trifecta of androgen cells : The ” androgen dependent cells , the androgen dependent cells that ” become independent” and the ” androgen independent cells” in situ. The ” lucky Men” have the androgen dependent cells. When testosterone is withdrawn these cells become indolent and stop propagating. Unfortunately, most men have androgen dependent cells that more quickly become ” independent, ” or a higher proportion of ” independent cells” from the start. For this group castration buys less time , can cause irreversible damage before castration failure is known , and can hasten the speed with which the cancer mutates into a more virulent cell structure. Since treatment for an aggressive cancer usually starts with chemotherapy and castration, and then proceeds with the others, it Is the patient’s responsibility to be vigilant as to where his cancer is currently residing on this cellular spectrum and if a treatment has failed. Sometimes a treatment continues that has lost its effectiveness but not its harmfulness. It is your body and your life. ” Shared decision making” works only if you have the information to share.
MEN ARE OBSESSED WITH THEIR PROSTATE CANCER.
Prostate cancer no matter it’s grade is relatively slow growing. That is good because you get to live longer. It is bad because you have more time to obsess over its existence. PSA is wonderful because it is a red flag that might let you kill the cancer in its infancy. It is bad because it is measured in tiny percentages whose movement men can obsess over. Most PCA men are so consumed with their cancer it dominates their life. It never leaves their consciousness because every hot flash , and other medicinal induced side effect, are hourly reminders of its presence. And then , every 3 months they get tested to see if their PSA has increased and If it has , they then repeat the cycle of Dr. visits, new treatments and medicines, and then wait anxiously for the next test to see if any of that slowed it down. Never a day goes by that it does not occupy their mind. Over time , it can suck the joy out of their life.
PROSTATE CANCER CREATES MORE MENTAL ANGUISH THAN PHYSICAL
A heavily treated man who lives a number of years after his diagnosis will experience a thousand times more mental anguish than physical. Men are reluctant to treat their mental instability even without cancer. All PCA men should automatically be referred to a mental health professional. Every tweak in their PSA is calamitous since it is like the gate opening at the Kentucky Derby with their cancer racing for the finish line. Their diagnosis is probably the most traumatic event in their life for which they are ill prepared .Telling a man that he has a potentially terminal disease and blatantly ignoring the psychic effects until he comes begging for help, is unconscionable. Holistic medicine is a form of healing that considers the whole person….body , mind , spirit and emotions. Oncologists are late to the party. If you find a holistic oncologist consider yourself lucky.
MOTHER NATURE IS CRUEL.
Mother Nature can be cruel. Anyone who has seen a child born with a cleft palette knows that. And her cruelty is ingenuous . She gives us this time bomb of killer cells and then inserts into our genetic code an unbridled survival instinct, thus creating this internal warfare where we know our crazy cells are eating us alive as we blindly fight to survive . It is like being in an arcade shooting gallery with only 20 bullets in your gun and limitless targets ready to pop up. If you have ever studied game theory you will know why once systemic, the odds are slim you can beat it.
THE PHARMACEUTICAL COMPANIES ARE NOT ELEEMOSYNARY ORGANIZATIONS.
In the middle of this drama of man making himself sick in an attempt to kill his own cells gone rogue, stands the merchants of medicine, the pharmaceutical industry. Postponing cancer death is a multi billion dollar business. Men and their insurance companies spend hundreds of thousands of dollars per year to extend a life for months, no matter those months will probably be the worst of their life. But we are vulnerable to anyone who says they can help us avoid death before we think we should die, and they stand there offering hope for a steep price.
CAN CANCER EVER BE DEFEATED.
The scientific community knows there will be no cure for cancer until we learn how to train our immune system to recognize that our previously friendly cells are killing us. Immunology Is in its infancy . Immunological treatment has been made possible by the discovery of the human genome and with it most of the genes that control the cellular processes including those that cause cancer. So today, for example, if you have a gene that causes a DNA repair mutation there may be a medicine to counter it. But if you kill that mutated cell there are likely other cancer causing genes activating other cells. Precision Immunology sounds tantalizing until you realize that you could never develop the hundreds of drugs necessary to kill every conceivable mutation.Only a massive reprogramming of the immune system will eliminate cancer.
THE CURRENT PROSTATE CANCER TREATMENT PARADIGM CAN NOT CONTINUE.
While a paucity of dollars are spent to find a full spectrum immunological response, the pharmaceutical industry continues to invest billions to tease the androgen receptor and the cells themselves to not devour whatever androgen remains after initial castration. When prostate cancer reveals It can live on tiny amounts of testosterone the androgen receptor needs to be tricked into not synthesizing or blocking that testosterone . They call these medicines ” advanced hormonals “. The reality is these medicines simply attempt to extend the time until castration totally fails and the cancer is totally testosterone independent .
No one without insurance can afford the exorbitant prices the pharmaceutical companies charge for these medicines. So the entire PCA treatment regime is made possible by the insurance industry. The question is how long the insurers will continue to provide every cancer patient the drugs the oncologists prescribe. The insurance companies have their own oncologists , so they know they are getting gamed by the pharmaceutical companies who create drugs with high prices and small life extensions that sick men will demand as their birthright. While these expensive treatments have been shown to extend one’s life by a number of months, it is fair to ask the wisdom of massive spending to extend by months the life of an 85 year old man with comorbidities. But the mere suggestion that one life may be more worthy of extension than another has been treated as blasphemy. But here is the deal . Insurers spending $ 10K a month for these medicines for every man who gets cancer will be unsustainable. . The strain on Medicare and pressure on increasing commercial health insurance premiums will be overwhelming. The consequence will be age/ health adjusted insurance approvals .So for the current generation, we are getting treatments which may not be offered to the next. Depending on your point of view , that may be good or bad.
BE CAREFUL THE DEATH YOU FIGHT FOR.
This war between mans’ quest to never die and Mother Nature’s pre- programmed exit will never end. Medical advancements have postponed our death by attenuating other morbidities, so now 42 percent of all Americans will ” get cancer.”. This is hardly surprising since most humans have cells that could become cancerous if they live long enough. Historically, one of the principal means of death has been some form of cardiac failure . Tremendous strides have been made to overcome cardiac failure which is one of the reasons everyone is now living long enough for their cancer cells to become active . And as the medical industry spends billions to delay our death from cancer, we now see Mother Nature’s next act to get rid of us : Brain Atrophy . Alzheimer’s, Parkinson’s and Lewey Body Dementia . These conditions are the consequence of keeping our bodies functioning longer than our brains. Our brains shrivel up and die inside our cranial cavity and in the final stages shut down the body. People who successfully beat heart attacks , cancer and other corporal diseases are prime candidates to become demented. Today, one in 10 people over age 65 have Alzheimer’s, and one third over age 85 have it. It is estimated that by 2050 , the present 5. 8 million Alzheimer’s patients will triple in large part because medicine has extended the time our bodies can live. Fighting prostate cancer and enduring all of the treatment side effects to buy time to let our brains die and kill our bodies is not an exciting proposition. Mother Nature is relentless. She wants us gone. And the harder we fight , the less tranquil may be our demise.
OUR SOCIETY ABHORS DEATH.
There is perhaps no better evidence of man’s inability to rationally accept that his life was not intended to continue forever than the thousands of advanced cancer patients who continue chemotherapy right up to their demise. The most charitable explanation for this situation is that they love life so much they cannot let go. A more realistic explanation is that they have an inordinate fear of death. Books have been written on this subject trying to understand this phenomena. Some say the rise in atheism and agnosticism is the culprit : Since there is no afterlife, a pathetic life is better than no life. Some say we are a fear obsessed society and an afterlife, even if one thinks it might exist, is an unknown, terrifying state of being. Others say that the medically enabled extension of our lives has drawn out the process of dying , so we get to witness our loved ones die an agonizing death, thereby making us more terrified. Whatever reason one wants to ascribe to this phenomena at its core it is a misunderstanding of life. That life is programmed to be short, not long, that life is to be enjoyed wherever and whenever possible, that you must love and be loved, and you must focus on thriving not surviving , because you can control the former but not the later.
OUR REFUSAL TO PERMIT DEATH WITH DIGNITY INCREASES OUR SUFFERING.
A handful of state legislatures have authorized physicians to provide the means to end the life of a terminal patient who is mentally competent. Most states have lobbies that have resisted it. So we now have Hospices on every corner , like gas stations, pumping morphine and other painkillers Into the dying, waiting for the cancer to finish us off. It is inconceivable that anyone who witnesses this spectacle of watching a once vibrant human being reduced to a vegetative shell crying out for painkillers cannot believe these poor souls should have been given the opportunity die earlier with some measure of dignity.
AN EPILOLOGUE. FIVE YEARS LATER.
MY CANCER DIAGNOSIS WAS A GIFT.
It is now 5 years later. My late in life non symptomatic Gleason 9 was a mandate to magnify, not diminish, whatever remaining life my biology would allow me to experience . I committed to become the best version of myself….the most generous, caring , respectful, helpful person I could be. If I became symptomatic , I would deal with it . Until then, I would love and be loved.
I HAVE NO ILLUSIONS.
I have been blessed. Five years of freedom from anxiety and the side effects of any treatment has been wonderful. I have no comorbidities , so absent a miracle , my cancer will catch and kill me. No matter the road we take, The PCA Toll Master will collect his toll. Once symptomatic my tumor burden will be heavy. My treatments will include those I avoided since they also palliate. From start to finish , my life may be shortened. Life is a lottery that we have already won. We can cash in our tickets earlier or later. For me treating later is better than earlier.
THOSE I PRAY FOR.
I read the cancer forums intermittently to remind myself of my blessings. I always pray for those who did not have the early warning signal I received. Many were advanced when first diagnosed, then castrated before they could regain their equilibrium from a bad cancer diagnosis. And I tell my story not to suggest that there is a moral to the story. . Everyone should do what works best for them and their families . This is simply my story . Since my comments may counter the conventions of the multi billion dollar medical/pharmaceutical industry and its numerous supporters. I have no desire to be the object of anyone’s antipathy , so I choose to remain
ANONYMOUS .
Note: I will read and appreciate all comments. We are in this together !
Low PSA (Less than 2 ng/ml) but high Gleason (9) cancer which spread to liver
Can anyone answer my question?
Another BiTE gets spit out
Importance of Early Detection-Current Numbers
