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.”