Heisenberg and Your Prostate

Uncertainty Principle:  A principle in quantum mechanics holding that increasing the accuracy of measurement of one observable quantity increases the uncertainty with which another conjugate quantity may be known.

Perhaps it is because I just got back from Albuquerque, a city which has become like a second home to me, that I have Heisenberg on my mind. For the one or two of you out there who are not “Breaking Bad” fans, “Heisenberg” is the name that mild mannered chemistry teacher Walter White assumes when he decides to manufacture pharmaceutical quality methamphetamine after being diagnosed with Stage III lung cancer. His motivation is to be able to leave his pregnant wife and son affected by cerebral palsy a little cash when he dies.  The evolution of Walter from upstanding high school teacher to ruthless drug lord unfolds over six seasons where moral ambiguity is the coin of the realm—in uncertainty principle terms, the more single mindedly he pursues his meth business, the fuzzier his personal ethics become.

Recently I have begun to think of the dilemma of PSA testing and the diagnosis and progression of prostate cancer in terms of the Heisenberg uncertainty principle.  Nowhere is this more apparent than in the case of men who have a rising PSA level post prostatectomy.  For many men faced with the choice of surgery versus radiation therapy, the selection revolves around the perception of certainty.  In medical school we are given the mantra, “To cut is to cure!”   Many patients choose surgery because of that perception—the ability of the surgeon after the procedure to say, “We got it all” and the satisfying thud of that post op PSA falling to zero.  Life is as it should be, the offending organ is gone, and the PSA is the definitive proof of cure.  In my own career I have pointed out countless times that if a man wants it black and white, cut and dried as it were, he may be more satisfied with the surgical option, since the slow fall in the PSA level post radiation therapy, with its attendant subtle blips and variations can be maddening to the patient, his family, and of course the attending physician.

But what of the patient whose PSA post prostatectomy does not fall to an undetectable level?  Or the patient whose PSA becomes unmeasurable, but months or years later starts to rise again?  On the one hand, our ability to measure serum PSA levels as a proxy for prostate cancer still lurking in the body has improved to the point of being able to measure values as small as hundredths of a nanogram per milliliter of blood.  We call this the supersensitive PSA assay and we accept this as proof that the cancer is there, somewhere, waiting to recur.  But what this supersensitive test cannot tell us is exactly WHERE those cancer cells are.  Neither bone scan, nor CAT scan, nor Prostascint imaging nor ultrasound is likely to give us the answer.  So what do we do?  As radiation oncologists we offer the patient the best we have, treatment to the “prostate bed”—the area where the prostate used to be—and sometimes the adjacent lymph nodes.  We know statistically that over a period of years, large groups of patients who were treated for their rising PSA with radiation do better than those who were not, but sadly this tells us nothing about the individual patient.  And the individual must decide for himself whether to take the leap of faith, and the side effects of one treatment compounded with another, that the cancer cells are still localized and that the radiation will kill them.

As a clinician treating patients with rising PSA’s post prostatectomy, I wait with bated breath for the first PSA after radiation to the prostate bed.  The patient is equally anxious—that stark simple but highly precise number is the measure by which we judge success or failure of the treatment.  But in focusing on the PSA, we often forget the obvious—that a number, even a highly precise number, is just that and nothing more.  What the patient will die from, and when, remains uncertain.  If I can help my patients remember that, and go and live their life with zest and satisfaction, then I have done them a real service.

Showing a Little Restraint

 For Jack Oberdorf

In 1986, Hybritech released its first commercially available screening test for prostate cancer– the PSA test—triggering a torrent of newly diagnosed cases of this disease, and in turn, a flood of new technology to treat it, including the Da Vinci surgical robot, and proton beam radiation therapy.  In recent years, however, the medical community has come under significant scrutiny for the overtreatment of this cancer, which in most cases, men “live with” and don’t “die of.”  Although its report remains highly controversial, in May of 2012 the United States Preventive Services Task Force gave the PSA test a “D” rating, meaning that there is moderate or high certainty that the service has no net benefit or that the harms outweigh the benefits.  My friend Jackie Widen’s story illustrates the point better than I ever could.  For you, from Jackie.

<<On Sunday March 19, 1995 my parents played their weekly round of golf with their “regular Sunday group” – about a dozen golfing couples who all lived in a gated community just north of Houston.  Mom and Dad had retired in 1984, moved from their suburban home in Houston and built their dream house in this peaceful golf course community.  They played the game they loved 5 days a week, traveled on golf getaways and centered their social lives around this colorful group of friends.  Sunday play days were followed by burgers and beer at the Clubhouse.  This particular Sunday gathering however was special– a cheerful send-off to my Dad – because on Tuesday he was scheduled to have a prostate cancer “procedure” done at Methodist Hospital in Houston.  Toasts were made for him to hurry up and get home because the next big golfing trip was already being planned. Exactly one week later these same men were dressed in their Sunday best, standing shoulder to shoulder in the first pew of our Church, honorary pall bearers at my Dad’s funeral.  What a week.

A couple of months prior my Dad had dutifully had his annual physical.  Most men avoid and procrastinate about doctor appointments, but he always paid attention to these check-ups.  At age 75 he had some predictable aches and pains, but nothing really serous.  His PSA had risen to a concerning level after having been monitored the year prior, and after consults with his urologist it was decided that yes this was cancer and yes it required more than a “watch and see” choice.  The urologist scheduled an appointment where my parents were presented with the options.  Apparently having the prostate removed was not something either of them wanted, so they agreed that having radioactive “golden” seeds implanted with follow-up radiation was their preferred course of action.  I did not know about this until the week prior to his surgery.  Cancer is a hideous word, but combining prostate in the discussion with your daughter makes things rather delicate.  My mom would later bemoan the fact that I didn’t accompany them to the Discussion/Assessment Appointment.  But because there were of course sexual consequences being discussed for each procedure, my Dad would not have felt comfortable with his eldest daughter in the room.

Mom stayed with us in Houston while Dad had his surgery.  Things went well, and relief was palpable.  Wednesday evening after we visited him in his room, my sister and my mother and I celebrated with dinner and champagne at a nearby restaurant.  The phone rang at 4:00 AM – a doctor who I did not know was babbling that he was very sorry, but my Dad had passed away.  I asked a few questions but then immediately called my sister who lived nearby to come over –we had to get to the hospital.  As I stood in my room, in my nightgown, shock ran through my body.  I knew it was this moment was the last remnant of peace my mother would ever know.  I will never forget walking upstairs, holding my mother’s hands, and telling her that Dad was gone.  Even my children remember the primal scream that followed.  I remember at the hospital that we were all dressed in the same clothing that we had worn the night prior.  I remember the nurses quietly crying at the station.  One of the nurses told me that most of their patients were cranky and difficult but my Dad was pleasant and polite even though they knew he was uncomfortable and scared.  I remember going into the room and seeing my Dad for the final time, quiet and still, cool.  I remember kissing him good-bye.  A bit later I had to go down and formally pick up his personal belongings in a bag marked with a “Personal Effects” tag.  Horrible, miserable, gut wrenching.

It is almost impossible to describe the grief that rippled through my family.  My mother was lost. My parents were that special type of couple; two sides to a coin I always described, and now she had lost her anchor.  Sorrow hurts almost like a physical knife, tearing your heart into pieces and you wonder if the pain might kill you.  And thinking/hoping it might.  It was that awful.  As it turned out my dad had likely suffered either a heart attack or an aneurysm after the surgery. I declined an autopsy, I couldn’t handle it.  Later when the dust settled I wish I would have agreed as I will never truly know what happened.  What I learned later was that he was smoking secretly without my mother knowing – and of course when the doctor asked in front of her “Are you a smoker?” he fibbed and said No.  Did this play a role?  I don’t know.

It’s been more than 15 years, but that event has forever changed my life.  I was told by one friend how lucky I was to grieve so much, and I thought she was crazy.  But you see, she explained, you must have had a very special father to grieve so deeply.  Some of us are not that fortunate.   She was absolutely right on that score.   I have replayed this over and over in my mind since he died.  Was the surgery necessary?  If the doctor had known he was a smoker would he have proceeded?  If left unchecked would the cancer have spread, or would he have had more active years?  I will never know.  But this I do know – in some ways my Dad got the best deal.  He lived life to its fullest and went from a round of golf one Sunday to meeting his Maker the next.   He went out at 100% and loved his life until that last breath.

I still have that Personal Effects tag on my bulletin board.  Love you, Dad.>>

In an email to me that accompanied this story, Jackie wrote “There is so much more to this story, of a daughter’s love and of the loss of the little things that you take for granted until they are gone.  When I went off to SMU it was the first birthday I had ever been away from home.  I was taking finals still during December so he called me and said “Do you know what I got 18 years ago today, at 6:30AM?  The most wonderful daughter in the world.  Happy Birthday honey”.  He continued doing that every year because I was either at college or then I got married in 1974 and moved to San Antonio.  Regardless, I was never at home at 6:30 AM on my birthday ever again, so he would make this phone call a ritual.  December 18, 1995 I didn’t get a call.”

When I was at ASTRO in Boston, I had a chance to chat briefly with Dr. Anthony Zeitman, past president of the society, the head of genito-urinary radiation oncology at Massachusetts General Hospital and a true leader in our field.  He said that he is recommending “active surveillance” (the new term for “watchful waiting”) for most of his patients with prostate cancer now, rather than treatment.  I was with my best friend from residency who knows Dr. Zeitman well.  She asked him, “Do you get PSA testing?”  His answer—“No.”

 

Like a Freight Train

Sometimes, you can see cancer coming.  What I mean is that when we sign up for that mammogram, or that PSA blood test, there has to be some tiny little part of us that says, “Ok, this time it’s my turn.  This time I’m the one who’s going to get the call.”  Sometimes the cancer sneaks up on us—that nagging little cough that makes us want to—suddenly and belatedly—quit smoking.  Or that little bit of blood in the stool that we’d rather think is a hemorrhoid, or that lump in the neck that doesn’t go away even when our doctor treats us for the strep throat that we know we don’t have.  But sometimes, as it happened to my patients yesterday, that cancer hits us like a freight train.  Just flattens us and leaves us in fragments, speechless in surprise and terror.  And when that train hits, we know in an instant that life will never be the same again.

I had two of the freight train kind of patients yesterday.  The first was a man in his 70’s, previously healthy, an avid stamp collector.  One day in August, he suddenly had difficulty finding his words.  A CT scan done without contrast dye showed no stroke or bleed in his brain, and he was sent home from the emergency room.  His wife persisted with the primary care doctor—“My husband is just not right!” she said, and last month an MRI was ordered which revealed a  large ugly looking brain tumor, and the patient was taken to surgery.  The pathology returned as glioblastoma multiforme, the most aggressive type of brain cancer.  He was seen in outpatient oncology clinic by a young neuro-oncologist, just out of his training. By the time the patient came to me, every shred of hope was gone.  The man, still having difficulty with his speech, told me that the doctor said that at most, he would live a year, if he chose treatment, a few months if he did not.  He said that the doctor told him that the tumor would spread like a spider web over his brain, and that he would lose all function.  The patient cried when he told me this.

The second patient was a very fit man in his early sixties, a retired school teacher who had surfed and been a life guard all his life.  In July, he had a surfing accident (his wife said, “Can you believe it?  He surfed some of the greatest waves in the world and he wiped out in two feet of water here at home.”)  He broke his collarbone in three places, which required surgery to repair.  His pain got worse however, and he started to have back pain.  Spine films showed a compression fracture, also thought to be related to the accident.  As this tan, fit, athletic man began to seek more and more narcotics for his pain, an MRI of the spine was obtained, which showed the bones to be brittle and riddled with tumors.  Yesterday the biopsy of his sacroiliac area came back positive for multiple myeloma, a disease of plasma cells in the bone marrow which destroys the bones that cultivate it.  In an instant, this nice couple’s dreams of a happy retirement were shattered.

When we first moved to the West Coast, I was offered two very different jobs.  In one practice, I was to be the person that rotated through six different outpatient facilities, covering the regular doctor’s vacations.  I would see the patients for consultation, and perhaps treatment planning, but would never see them through their treatment or in follow up.  The other job was a hospital based practice where I would be the director of the department and have longitudinal care of the patients.  I chose the second, of course, because being the linear task oriented person that I am, I could not conceive of not seeing each patient through from start to finish to follow up.

I see things differently now, twenty years later.  I have a calling in life.  I want to be there when that freight train hits.  I know I can put the pieces back together, and I know that when that shattered patient leaves my office, for the first time in hours, or days, he will be able to notice the sun shining in our Southern California sky, and taste a faint flavor of salt on the warm breeze flowing from the Pacific. In turn, I will have the deep satisfaction of knowing that I did something good that particular day.  And that, actually, is quite enough.