HIGHLIGHTS

 

Part One:  Never Imagined I Was at Risk for Prostate Cancer

                   By Randall Fitzgerald, PrevientMD Chief Editorial Officer

 

          Care to know one of the ‘why’s’ for my involvement with consumer education and preventive medicine, on behalf of PrevientMD?

Permit me to share.

          For the first 65 years of my life, I felt in reasonably good health, had no identifiable health concerns or diagnosed conditions, and had kept up a regular exercise regimen that for several decades included running five miles a day, followed by a decade of religiously working out on gym machines and in yoga classes.  

          You could say that complacency had become my middle name

          While self-congratulating myself on this regular exercise routine and good health history, I had virtually ignored three other big essential pieces of the optimal health puzzle: a preventive dietary strategy, annual preventive diagnostic testing, and preventive stress management.

Those oversights, singly and together, would prove to be my downfall.

          It had been several years since I had undergone a routine physical, with blood testing, and when I finally had one performed midway through my 65th year, the results came back showing a PSA (prostate specific antigen) level of 23, six times higher than normal.

 My physician put me on a week-long regimen of antibiotics—Ciprofloxacin-- to see if benign inflammation could account for the high PSA score, but a subsequent blood test after the antibiotic showed a 19.9 PSA score, still five times higher than normal.

I was then referred to an Urologist, for a prostate biopsy.

          Needless to say, I was stunned. What had happened over the intervening couple of years, since my last blood test, to account for this abnormally high PSA reading?

 It was a particularly vexing question for me, because there was no history of prostate cancer in my family. Furthermore, I hadn’t eaten beef or pork in a decade, both of which, based on my reading of some medical studies, had been identified as possible risk factors in triggering or intensifying prostate cancer. (I had overlooked chicken and dairy foods, which my subsequent research found could also be possible risk factors.)

There was one undeniable wildcard factor underlying my previous three years of health history--- chronic stress.

During those three years prior to my abnormal PSA test, as President of our neighborhood homeowners association, I had been the lead plaintiff in a lawsuit against our County government, after two leaks in its water utility had resulted in the collapse of seven houses and damage to my own home.

The stress of this protracted legal battle had been unrelenting and in retrospect, it’s clear that I didn’t manage the stress well. I didn’t exercise as often, or as rigorously, as before the lawsuit, and I gained 15 pounds as a result. That combination of factors may have compromised my immune system.

Prostate Biopsies, Cancer Grades, Treatment Options

          If you’ve never had a prostate biopsy, let me sum of the experience in one word—invasive.

While lying halfway in a sitting position, legs up in the air in stirrups, the Urologist injected a localized numbing agent into my prostate, followed by jabs from a dozen long needles to collect prostate tissue samples. Each needle injection was accompanied by a popping sound, like an air rifle exploding.

These would be relatively painless injections, the Urologist had reassured me, but every needle jab that came close to a nerve, and there were several, produced a shock wave jolting my entire body.

          Off and on for several weeks afterward, I had observable blood in my urine, semen, and bowel movements; also, sitting for any extended period of time caused some discomfort and occasional shooting pains.

          When the biopsy results report came back less than a week later, my Urologist phoned me. “Some microscopic cancer cells were found,” he said diplomatically, trying not to alarm me. “You need to come in so I can discuss your options.”

          It turned out my Urologist was retiring from the profession in about a week, and I was one of his last patients. So when we met again, he not only gave me my biopsy results---three of 12 tissue samples showed cancer---he referred me to the cancer center at UCSF, the University of California at San Francisco, for treatment.

          He also offered me some parting advice: “I’m a surgeon. I cut things out. If I were you, I’d have it {your prostate} cut out, so you don’t have to worry about it anymore.”

          Those biopsy results were neither worse nor better than I expected, because I had, by this point, released all expectations. I was deep in uncharted territory for my life experience.

          The pathology report rated my cancer samples as 6 on the Gleason cancer grading scale. Gleason scores can range from 2 to 10, and this scoring system is designed to predict how likely it is for the cancer tumor to spread.

A Gleason score of 6, accompanied by a relatively low PSA of less than 10, is considered low-grade, my Urologist explained. But a Gleason 6 accompanied by an unusually high PSA score of 20 or above, such as mine, was suspicious and required further testing.

To help determine whether the cancer had already metastasized to other parts of my body, I underwent a series of bone and abdomen CT scans at the Ukiah Valley Medical Hospital. Those tests came back negative, thank goodness.

          Once my medical file was in the USCF system, appointments were arranged with a UCSF surgeon, who would be available to surgically remove my prostate, if I chose that option, and with a UCSF brachytherapy practitioner, a cancer treatment process involving the implantation of radiation pellets into the prostate.

Four Friends, Four Very Different Experiences

          Meanwhile, I was contrasting the experiences of friends who I knew to have battled prostate cancer, or to have been alarmed about its possible occurrence.  

My late friend Rudy, a speech pathologist, three years older than me, had died the previous year of prostate cancer, after it had metastasized while he spurned conventional cancer treatments and relied on herbal supplement and restrictive dietary remedies. Visiting him in hospice and watching his steady physical decline had convinced me that I would never rely upon alternative treatments alone.

          An old friend around my age, Mark, had treated his prostate cancer using HIFU, a high-intensity focused ultrasound, in which sound waves are used to kill cancer cells. He praised the relatively new procedure as being minimally invasive, and having fewer side effects than other treatments. But he also confessed that after a first round of treatment a few years earlier, his prostate cancer had recently returned in a more aggressive form. That news naturally made me feel cautious about considering this treatment.

          One of the attorneys representing our neighborhood in our lawsuit against the County had undergone a radical prostatectomy, the complete removal of his cancerous prostate, at USCF, a few years earlier. Bart, in his mid 60’s, had a PSA level in the so-called normal range, well below 4, and his prostate cancer was only discovered by a doctor’s digital rectal exam that found a lump. Bart praised the surgery as having given him a new lease on life, with many fewer severe side effects, such as sexual dysfunction, than he had initially anticipated would occur.

          Finally, I consulted an old classmate from college, Rusty, whose PSA levels of 10-- and above-- had resulted in three prostate biopsies over the previous five years. “I’m never having another biopsy,” Rusty said. “All three of mine came back negative. I may just have a naturally high PSA.” Rusty was placed on what urologists call “active surveillance,” periodic monitoring of prostate health, using PSA tests and digital exams.

          Because my own PSA score was so high, the doctors I consulted at UCSF wanted a second more sophisticated biopsy done, called a MRI-ultrasound fusion biopsy. They didn’t completely trust the previous findings. This news raised my anxiety level a few notches.

          As a prelude to having this second biopsy, I had to undergo an invasive prostate MRI procedure, to generate images for use in directing the biopsy procedure a month later.

Suffice it to say, I wouldn’t wish the discomfort of this prostate MRI on anyone. It involved the insertion of an inflatable probe into my rectum, as I lay in the MRI chamber, arms strapped to my side, for nearly an hour, while being bombarded through the pelvis by Tesla magnet coils to produce spectroscopic images of the prostate tumors.

          Coming next for me, would be the MRI-ultrasound fusion biopsy, conducted by Dr. Katsuto Shinohara, the developer of this procedure.

          That’s when my motto of ‘always expect the unexpected in life’ came true once again.

 

Part Two: Never Imagined Prostate Cancer Could Trigger a Stroke

          Just before Thanksgiving, at the end of a three hour conference call with business associates, I realized that my words were coming out garbled. I couldn’t even decipher what I was saying.

          Thinking I was just tired from lack of sleep, which might also explain the headache I was experiencing, I took two aspirin and laid down for a nap. Less than an hour later, I got up and dressed to meet my life partner, Julie, for dinner.

          As soon as Julie heard me unsuccessfully try to utter a complete sentence to order from the menu, she knew something was wrong. “I feel odd,” I managed to say. “I feel confused.”

          She insisted on driving me directly to the emergency room of a nearby hospital. She suspected that I was having a stroke, even though I didn’t display any droopiness in the face, or other indicators of paralysis. Julie’s father had been bedridden for decades from a stroke that had paralyzed him, and she had been one of his caregiver’s, so she knew that speech disruption was a stroke symptom.

          On the way to the Sutter system hospital, she asked me to read the road signs. Everything that came out of my mouth sounded like what Paleolithic cave dweller guttural mumblings must have been like, in the last ice age.

          As soon as Julie told emergency room personnel I might be having a stroke, a team of a half-dozen nurses and doctors swung into action. They wheeled me into the radiology department for a CT scan of my brain, which confirmed I had a blood clot affecting my speech.

          A doctor asked Julie how long I had been displaying these symptoms. She estimated it had been for up to three hours. “Then we may have enough time left to give him TPA,” said the physician, referring to a clot buster medication given intravenously, which must be given within four hours of the onset of a stroke to have any benefits.

 Those two aspirin I took earlier, during my headache, may have fortuitously bought me a little extra time.

Had the CT scan picked up bleeding in my brain, this TPA drug could not be administered because it would have accelerated hemorrhaging, perhaps resulting in death.  So I was all clear to be administered what many medical authorities and patients have called a miracle drug.

Meanwhile, an ER doctor held up a cell phone to my ear and I heard the voice of a female neurologist speaking from a stroke center, located at Sutter Pacific Medical Center in San Francisco, a three hour drive away. She explained that she had been sent my CT scan and saw that I had a blood clot in my brain, affecting my speech. Even after being administered TPA, I would need to be transported by ambulance to the stroke center to determine, using an MRI and other tests, whether I had other blood clots.

All I could manage to mumble in response was a weak, indecipherable protest. This was Friday night, I remember thinking. On Monday I needed to be at UCSF in San Francisco for the second more sophisticated prostate cancer biopsy. It had taken weeks for this important biopsy to be scheduled. Would they let me out of the stroke ICU in time for me to make that appointment at another medical facility?

Just before the TPA entered the IV in my arm, a male nurse held up a chart with five drawings on it, including a cactus, a hammock, and a baseball glove. He asked me to identify each. Everything I tried to communicate came out guttural, which I found extremely frustrating.

Ten or fifteen minutes after the drug entered my body, I realized that I could speak again. “Julie, I can talk,” I exclaimed. “I was in a fog.”

A nurse once again showed me the chart and asked me to identify the five objects. This time I clearly spoke each word, without hesitation. TPA had busted the brain clot. It truly did feel like a miracle drug.

During the three hour nighttime ambulance ride in the rain from rural Lake County, to the stroke center in San Francisco, an ambulance driver and two paramedics tried to keep me comfortable. But it was cold back there on the gurney, and being silhouetted through the back windows by the glare of car headlights trailing us, I felt more vulnerable, disorientated and filled with trepidation than ever before in my life.

When we got to Sutter Health’s Pacific Medical Center around midnight, I was immediately taken in on the gurney for another CT scan. Then I was wheeled into the ICU ward, greeted by the sound of a loud buzzer and a nurse yelling, “Code 6, Code 6.” One of the two ICU assistants wheeling my hospital bed, apologized, “I’ve got to answer this emergency,” before rushing down the hallway to assist another stroke patient who was in cardiac arrest. 

If you’ve ever been an ICU patient, you know how sleep is rationed. Every hour you are awakened by a nurse wanting to take your blood pressure, draw blood, check for paralysis, or ask you various questions.

Over the next few days, I received visits from neurologists, cardiologists, internal medicine physicians, speech pathologists, physical therapists, occupational therapists, and more besides, all assessing whether I had any residual effects from the stroke. None were found. Apparently, I had made a complete recovery.

As the final test procedure in the stroke center, administered just a few hours before my release, I had my mouth propped open and a camera snaked down my esophagus, to assess whether my heart was malfunctioning, creating blood clots.

Another invasive procedure!? I know that I am using that word a lot in these blogs, yet the gagging and squirming discomfort I experienced with that camera down my throat was enough to leave me at a loss for words, quite literally.

How Could Stroke and Cancer Connect?

“It’s possible your stroke was caused by side effects from your prostate cancer,” one of the attending physicians informed me, after the camera down my esophagus found no irregularities in my heart.

Prostate cancer can trigger a stroke!?  

I had never heard of such a thing before. How could that happen?

A study in a 2015 issue of the journal, Annals of Neurology, analyzed Medicare claims and found that within the first three months of a cancer diagnosis, some patients are at a much higher risk for a stroke. My own diagnosis of prostate cancer, in August, had been followed three months later by the stroke, in November.

Researchers involved with the study speculated that cancer and its treatments can cause the blood to thicken, affecting its ability to clot, thus triggering a stroke. Though I hadn’t yet received any cancer treatment, it was also true that my stress from the cancer diagnosis had significantly raised my blood pressure into the hypertension range, which might be another stroke risk factor.

My primary care physician would later confirm that he had seen many cases of cancer triggering a stroke, among his own patients, and he felt it was a direct result of the cancer causing blood clots to form.

“Stroke is particularly relevant to cancer patients because strokes often preclude or delay cancer treatments,” commented one of the Annals of Neurology study co-authors, Dr. Babak Navi, a neurologist at Memorial Sloan Kettering Center Cancer Center.

This observation was something I was about to find out firsthand for myself.

As a result of the stroke, and the need to go on the blood thinner medication, Eliquis, I received a call from a nurse for Dr. Shinohara, at UCSF, cancelling my second prostate needle biopsy using an ultrasound technique for imaging, which I had been waiting weeks to have performed.

“You are too much at risk for serious bleeding if we do the biopsy,” she informed me. “The earliest we feel comfortable doing it would be in March.”

This news set off what I can best describe as a panic attack. The realization dawned on me that March, four months away, would mean I would have been living with untreated prostate cancer for more than nine months. Visions of my suffering friend Rudy, who had died from his untreated prostate cancer, convulsed me with fear, tinged with an undercurrent of anger.

“I might be suicidal if I have to wait until March,” I blurted, not intending to be dramatic, but certainly feeling the drama of the moment.

“Are you having suicidal thoughts right now?” the nurse asked me, a note of alarm in her voice.

“Let’s just say I am not in a happy place,” I replied.

That brief interaction set in motion a flurry of activity.

After hanging up with the nurse, my phone rang just a few minutes later. It was Julie, my life partner, calling from her work place. She had just gotten an urgent message from a UCSF social worker, who had been alerted that I might be intending to harm myself. She had asked Julie to check up on me.

I explained the whole situation to Julie, and how I was feeling the need to protest this decision to delay the biopsy. She agreed with me. I would need to become my own advocate.

Within an hour, much to his credit, I received a call from Dr. Shinohara himself, inquiring about my concerns.

“Waiting a total of nine months for a confirming biopsy is not acceptable to me,” I explained. “If I am going to take a risk, I would much rather have the biopsy done soon, and accept the risk of hemorrhaging from it, than to spend more months waiting and stressing out about the cancer.”

“I understand,” said Dr. Shinohara, reassuringly. “You do have an excessively high PSA level, despite the Gleason 6 cancer score, and we need to find out why. I will reschedule your biopsy for next week. You just need to stay off the Eliquis for at least three days prior to the procedure.”

What a sense of relief I felt, as a result of this decision. From this experience, both in the moment and in retrospect, I learned how every patient must become his or her own best and most persistent advocate.

 If we don’t speak up for ourselves, if we don’t ask enough probing questions, if we meekly just follow instructions, we have no one else to blame if we end up as a health statistic.

That advice holds true for doing our own research in the realm of preventive health. We are all guinea pigs in our own life experiments.

Part Three: Prostate Cancer Treatment Begins

My prostate biopsy with Dr. Shinohara, using an ultrasound imaging device attached to the needles, meant being poked this time by 16 needles instead of 12. Each one was long as a knitting needle. There was much more pain during and afterward, than with the previous biopsy I had experienced..

A few weeks later, once the biopsy ultrasound  images were available, showing the position of the two tumors, I met with Dr. Mack Roach, to confer on our treatment approach. Rather than brachytherapy, implanting the radioactive pellets in my prostate, Dr. Roach recommended doing a less invasive external beam radiation therapy, a robotic procedure called CyberKnife. He felt that would be safer because I was taking the anti-clotting drug, Eliquis.

His advice came highly valued. A professor of Radiation Oncology at UCSF, he was internationally known as an expert in the radiation treatment of prostate cancer. President Obama had appointed him to the National Cancer Advisory Board, which assists the Director of the National Cancer Institute in approving grants for cancer research.

During our conferral, Dr. Roach mentioned how 25% of the cancer patients he sees have already had their prostate removed. I was surprised. I had thought a radical prostatectomy would rid you of prostate cancer for life. Roach said the cancer could return in the same area where the prostate had been because prostate cancer cells can sometimes hide undetected in nearby tissue.

Dr. Roach believed that radiation offered me the best chance of recovery, though that was by no means guaranteed. In the case of California Gov. Jerry Brown, he had radiation therapy for prostate cancer in 2012, but his cancer returned and he had to return to UCSF in 2017, for more radiation.

The last week of January, I had still another PSA blood test--the score came back as 28, compared to 23 a few months earlier, indicating a worsening condition.

On February 10, three 24 kt pure gold pellets, each about the size of rice grains, were implanted into my prostate by Dr. Shinohara, to be used as targets for the CyberKnife radiation sessions. Still another MRI was performed on me ten days later to make certain the pellets hadn’t shifted their position.  

On March 3, when I called UCSF to find out why I had not yet been given a cancer treatment schedule, a radiation oncologist informed me that I had a new problem. The latest MRI found that external lymph nodes in my pelvis had suspiciously changed in size from the last MRI done late last year. I was told that I needed to schedule a new test, called a PSMA, to determine if prostate cancer cells migrated into these lymph nodes.

There was a catch in doing this procedure. The test used a PET/CT scan not yet FDA approved, so Medicare won’t pay for it; the entire cost—way more than $10,000-- would have to come directly out of my pocket.

 Not feeling like I had any choice, I started trying to schedule this new test and was told they couldn’t book me until May, which would be 10 months since my cancer diagnosis. No wonder the cancer seemed to have gotten worse. That would mean the four CyberKnife radiation sessions wouldn’t begin until June.

          Once again, choosing to be proactive, I contacted my primary oncologist, Dr. Roach via email, and complained about having to wait two months. He agreed to recommend a biopsy of the pelvic lymph nodes. He had it scheduled for the next week.

On March 15, I returned to UCSF, and had the biopsy performed, which involved six CT scans done as the physician tried to position the needle to take a sufficient sample for the pathologist to analyze. In the room with me were a surgeon, two physicians in training, two nurses, a pathologist, and a CT operator. I was both generally sedated and given local anesthetic during the procedure, so it was painless, other than feeling pinching sensations when the biopsy needle moved around inside me.

Meanwhile, I received the results from wearing a heart monitor for two weeks, which was an attempt to determine whether my heart had formed the blot clot that caused the stroke. While it turns out that I apparently don't have Atrib or a heart flutter, an abnormality in the heart was detected and I must see a cardiologist. In order to do that, I must get a referral from my primary care doctor. The beat and the bills, go on and on.

On March 20, I was informed the pelvic lymph node biopsy came back negative. That finally cleared the way for the radiation treatments to begin.

Glow in the dark time?

CyberKnife radiation sessions began on April 10, and my partner Julie and I checked into a motel on Lombard St., not far from UCSF. Each session over four days involved an hour lying on my back, strapped down so I don’t move, as a huge robotic arm did gyrations around me, movements based on a computer program for the location of my prostate tumors. From each angle, the robotic arm zapped me with beams of targeted radiation, using the three implanted gold seeds for target guidance.

 I never felt any discomfort or anxiety during the procedure, one reason being that I kept my mind focused the entire time on visualizing the cancer cells dying (being eaten by tiny Pacmen) and the tumors shrinking.

 I can't give enough praise for the efficiency, care, and compassion of the UCSF staff. When the sessions were over, on the afternoon of the fourth day, Dr. Roach pointed out a trolley bell in the hospital hallway, and said a tradition for cancer patients completing treatments was to ring it. I pulled the rope on the bell and as the clanging sound echoed down the hallways, staff members burst into cheers from their hidden cubicles.

Three months later, a PSA blood test found my score had dropped from 28 to a 6, which was considered a positive sign that the tumors were shrinking.

Part Four: Beware of Whether Your Medical Bills are Covered

          Anyone turning 65 and about to sign up for Medicare needs to be warned. If you attempt to subscribe to supplemental insurance to cover the 20% of medical costs not covered by Medicare, you can’t have a pre-existing condition that was diagnosed within the previous two years, or you will be turned down by all of the insurance providers.

          I learned that lesson the hard way. I waited several months to sign up for supplemental insurance, after turning 65, and then got diagnosed with prostate cancer, with the insurance application still sitting on my desk.

 Big mistake!

          Once denied coverage, I had to watch with shock and awe over the ensuing year, as my personal medical bills began to pile up, once Medicare had paid its 80% share of costs.

          Here are just a few of numerous examples. Spending less than three hours in a Sutter Lakeside Hospital emergency room for the stroke resulted in a bill of $34, 148.76, of which I was directly charged $6,731.95. The vast majority of the bill--$17,996.76—was for ‘Pharmacy.’ Another $11,200 was for ‘CT Scan.’

          UCSF sent me a series of bills for services related to radiation treatment. The largest was for $3,592, though cumulatively the total came to nearly twice that. I got a series of bills from Adventist Health for services related to post-stroke cardiology, including a $1,316 bill for my part of the heart monitor costs.

          Altogether, I faced more than $20,000 in total bills from three hospital systems, with more to come and yet to be calculated.

          There were also costs to me for the purchase of Eliquis, prescribed after my stroke to thin my blood and help prevent another stroke. This is an expensive drug—more than $500 a month—if you don’t have drug coverage, which I had through United Health. But they denied me coverage for Eliquis, claiming an insufficient medical cause for its use had been demonstrated in my case.

          Really! A verifiable stroke isn’t sufficient cause for prescribing a blood thinner!?

On two separate occasions my primary care doctor and my cardiologist submitted requests for coverage. They were turned down both times because I hadn’t been diagnosed with atrial fibrillation  (a quivering or irregular heartbeat) that causes blood clots to form and strokes to happen.

          Early that summer my cardiologist referred me to a heart specialist with the Adventist Health hospital network, Dr.Gan Dunnington, a tall and genial thirty-something, who wears jeans and cowboy boots in the office. He had been an assistant professor at Stanford University and was regarded as an expert in performing a surgical procedure to treat atrial fibrillation, redirecting the heart’s electrical impulses so blood doesn’t pool within the heart. He analyzed the results of the two-week chest patch I had worn and found the longest abnormal rhythm incident was 20 seconds, too short and episodic to quality as diagnosable a-fib.

So I got a referral from Dr. Dunnington, this time to a young Electrophysiologist (a specialist in the heart’s electrical activity) named Dr. Daniel Kaiser, who had done his cardiology fellowship at Stanford University. When we met, he recommended that I have a semi-permanent heart monitor implanted in my chest to record any abnormalities (including subclinical atrial fibrillation) to be recorded over the next three years.

In August, on solar eclipse day, I went in for the surgical procedure. It took less than hour to have the Medtronic cardiac monitor, the size of two matchsticks, implanted under the skin in the left chest area. Throughout the day, this device keeps track of the heart’s electrical activity. Each night, it sends the data to a wireless monitor next to my bed, which in turn, transmits the data to Dr. Kaiser’s clinic in the Bay Area for periodic analysis.