Stuart Scott’s Acceptance Speech

Sometimes I feel like what I have to say isn’t very important and after watching a video clip of Stuart Scott accepting the Jimmy V Award for Perseverance tonight on ESPN, I think you might prefer to hear from him.  Background:  Stuart Scott was diagnosed with cancer of the appendix in 2007 and has been battling the disease for seven years.  Jimmy V, or Jimmy Valvano was the head basketball coach at North Carolina State, who died in 1993 of cancer but was known both in sports and his personal life for his slogan “Don’t give up, don’t ever give up.”  According to Wikipedia, Jimmy V’s tombstone reads, “Take time every day to laugh, to think, to cry.”

If you have time, continue to watch this video to see the clip about Scott’s enrollment in a clinical trial at Johns Hopkins, and then just as amazing, Michael Sam’s emotional speech about tolerance, acceptance and growing up “different” as he accepts the Arthur Ashe Courage Award.  These two guys say it all, so please watch:  http://espn.go.com/video/clip?id=11225895

More about my experiences in Dermatology tomorrow.

Love and Loyalty From the Souls of Dogs

“Such sadness and endearing and abiding love…”  Fran

I am by nature a “right brain” person—despite my training in science and medicine, I prefer paintings and photographs to words and mathematical constructs.  Over the past two years of writing this blog, I have resisted on many occasions the urge to add pictures to this website, despite the fact that I possess wonderful photographs of the things that I write about—my family, my dogs, my horses and my patients.  I am constantly taking pictures—I have chronicled my entire life in photographs from my first Kodak Brownie and I will continue to do so.  But I started writing again, thirty eight years after graduating from college with an English degree, to see if I could “describe” rather than “illustrate” the events in my life which have had an impact.  I want to write stories that leave a little bit to the imagination, to my readers’ right brains—stories that can be read out loud.

For the past few months I have been following the saga of Roo on Facebook.  Roo is an Ibizan hound owned by the artist Nan Kilgore Little. Affectionately known by their owners as “beezers”, this breed’s history dates back 5,000 years to the times of the Egyptian pharaohs.  The erect ears and tall lean bodies of these hounds are depicted in hieroglyphs in the tombs of Ptolemy, Nefermat, Mereku and Tutankhamen.  Think of the god Anubis, Protector of the Dead, and you will have a good visual image of the head of this hound.  Brought to the Balearic Islands off the coast of Spain by the Phoenicians in 800 B.C., these dogs have hunted to put food on the table of their masters for centuries.

Roo turned sixteen years old a few weeks ago, an extraordinary old age for a large sighthound. You can see it in the pictures—the eyes, once keen are now cloudy and the strongly muscled hindquarters have wasted.  The bone structure appears more prominent, and yet more delicate at the same time. The ears are nearly transparent, and beautifully veined.  Nan started to post pictures of him on his daily walks, interacting with the other dogs in the household, and resting on his favorite pillow—pictures which have inspired a legion of Facebook followers who clearly feel privileged to watch the “old man” in his waning days and to take that last journey with him and his loving family.

The last forty-eight hours have been tough. Old Roo, with his brightly colored bandanna and his watchful countenance has stopped eating and has taken to his bed, his head resting on his favorite pillow.  He is not in pain, but he is very tired.  No more walking in the Wild Yard and no more jumping over the Big Tree.  His best friend, an Australian cattle dog named Barkool, has taken up watch and rarely leaves his side.  Barkool is neither elegant, nor particularly beautiful and his squat body is a contrast to the lean and classical Ibizan.  He is Sancho Panza to Roo’s Don Quixote.  He is the friend we wish we all had.

My Facebook friends love dogs as do Nan’s and as a result, we frequently feel compelled to put up photographs of abused, starving and abandoned canines in need of rescue, or dogs beaten and bloodied in the service of man’s cruelest whims.  But rarely, in these hastily posted pictures, we see a glimpse of life as it can and should be.  Yesterday Nan posted a photograph of Roo and Barkool.  Roo is wearing his blue bandana and is wrapped the cocoon of his softest blanket, one covered by multicolored hearts.  Barkool’s head is tucked under Roo’s chin as a pillow and his stocky body is still as can be.  His eyes show apprehension, and resignation at the same time.  He is, above all, present for his buddy.

Sometimes friends and families of my patients are uncomfortable visiting their loved ones after a diagnosis of cancer, or even more so at the end of life.  They ask me, “What should I say?” or “What can I do?” The answer is revealed in Nan’s picture of Roo and Barkool:  without fanfare, without words, without tears, just be there.

I am Passionate About…

A few days ago I decided that since I have been officially retired for two months, it was time to change my profile on the LinkedIn social network.  After all, the purpose of that network is to link business and professional people to potential opportunities and ideas.  I needed to let contacts know that I am no longer with the University where I practiced for the last seven years, while at the same time, just labeling myself “retired” seemed far too final.  LinkedIn, as it turns out, has a “prompt” on each member’s profile page which encourages us to say succinctly what we’re all about.  The prompt is “I am passionate about…”  It took a few moments for my brain to dispel romantic visions of the great love stories of all time–Catherine and Heathcliff?  Zhivago and Lara? Scarlett and Rhett?  The realization dawned on me that what LinkedIn was alluding to was professional and not physical.

What I am passionate about, and remain so despite the significant burn out that led to early retirement, is community based cancer care.  Contrary to what I believed during my residency, when I referred to patients being admitted by LMD’s (local medical doctors) from St. Elsewhere, over the course of a long career I have come to believe that most cancer patients are served best by being treated in their own communities.  Certainly there will always be patients whose presentations, diseases and complications merit immediate referral to a tertiary care center, however most patients with typical presentations of common cancers are also people who have jobs, who have children and/or elderly parents to care for, who have concerns about the financial burdens of treatment, and for many elderly patients concerns about transportation to and from treatment.  Our job, as community based cancer specialists, is to make sure that the treatment being provided measures up to the standards of care and safety that we have learned from our colleagues in major academic practices.  In communities with limited resources, this can be challenging.

For physicians and community leaders interested in creating a community cancer center the key ingredients are simple. First, you need a mission.  Decide what the goals of your center will be and write them down.  Create a statement.  An example could be:  “Our mission is to deliver medically and technologically advanced cancer care to residents of this community in a supportive environment close to home.”  These goals will be your guiding light as you proceed.  Second, you need a building.  Although many of the functions of a tertiary cancer center can be spread out into the community, we are not yet at a point where we can deliver “virtual cancer treatment.” Many pre-existing buildings can be modified to accommodate chemotherapy and even radiation therapy, at a fraction of the cost of new construction. Third, you need equipment.  Specifically, in order to deliver radiation therapy you need a multipurpose linear accelerator, capable of delivering highly focused stereotactic radiation as well as standard of care intensity modulated radiation therapy and superficial electron therapy for skin cancers.  Although it makes a good PR campaign to have the latest “sexy” name in equipment, much of this highly specialized equipment is not designed for a general practice. You will need infusion equipment and likely some laboratory equipment.    Fourth, you need highly trained and certified personnel to administer chemotherapy and radiation therapy, and particularly in the case of radiation, to insure quality. Fifth, it is my opinion that community cancer centers benefit greatly from affiliation with university practices in terms of access to clinical trials, to tumor boards, to advanced pathological diagnosis and to the expertise of specialists in each disease site.  Finally, and perhaps most importantly, you need the support of the community. To paraphrase Hillary Rodham Clinton who said, “It takes a village to raise a child”, I would say that it takes the dedication of a community to create a successful cancer center.

The future of cancer treatment, indeed of medicine in general, is unclear however we must not lose sight of the fact that patients are more than their cancer diagnosis, their chemotherapy recipe or their radiation dose prescription.  We need to keep them in their jobs, with their families, functioning as normally as possible under difficult circumstances, throughout their treatment and afterwards.  My own experience has shown that this is achievable in a personalized setting in the patient’s community.  That is what I am passionate about.

This piece is condensed from a longer talk I gave in Jamaica in October 2013.  For the full transcript feel free to email me and I will send it on.

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.

Two Hundred and Nine Short Essays Later

 

Here I am in Boston, on the eve of my very first writer’s conference, feeling a bit like an imposter.  After all, the extent of my writing so far has been this blog, apart from thousands of histories, physical exams and treatment plans over the last thirty-nine years since starting medical school.  It occurred to me that someone might actually want to know what it is that I write about.  And then it occurred to me that I had never actually thought about it.  So I did, and this is what I came up with.

 

WHAT I WRITE ABOUT:

Cancer                                                                                                                           Radiation Therapy                                                                                                                 Dogs                                                                                                                                   Cats                                                                                                                                     Horses                                                                                                                                   Being a mother                                                                                                                         My kids                                                                                                                                 Travel                                                                                                                                    My father                                                                                                                               My mother                                                                                                                             Being a doctor                                                                                                                         Life

WHAT I AM TRYING TO SAY ABOUT LIFE

Cancer patients inspire me and motivate me                                                                       I’d like to explain a few things about cancer                                                                         I’d like to explain a few things about radiation therapy                                                     Cancer is evil and is not selective and makes me sad                                                 Cancer patients can be funny and they also make me laugh                                   Sometimes people do really stupid things when it comes to cancer treatment         Sometimes simple people can be heroes                                                                         Dogs are good therapy for me, my cancer patients, and my kids                                     Ditto on cats                                                                                                                       Horses are beautiful, liberating, dangerous and always expensive                                     You can be a mother AND a doctor and it’s going to be very hard                                     Your kids will forgive your shortcomings                                                                            Your kids will make fun of you                                                                                           Your kids will be successful if you EXPECT them to be and don’t harass them              Travel is enlightening and sometimes difficult and sometimes funny                                    My surgeon father is both an inspiration and a source of extreme annoyance                       My mother had a hard life and a hard death, despite appearances                               There’s always someone worse off than you                                                                   There’s always something to hope for

 

WHAT I AM TRYING TO SAY ABOUT BEING A DOCTOR AND ABOUT MEDICINE

Examine your patients—it’s important                                                                               Think for yourself and follow your gut instinct                                                                Beware of templates.  They tempt us to cheat                                                                     The Rules of the House of God still apply                                                                      Doctors make mistakes.                                                                                                       Be very selective about who you hire and set a good example for them                             Be the captain of the ship                                                                                                     Try not to whine, even if you fail                                                                             Communicate with your referring doctors and with your patients                                     Take the time and make the time                                                                                         Learn to speak slowly and clearly in layman’s terms                                                           Try not to say no, and never say “never”                                                                             DO NOT DROP THE BALL when dealing with cancer patients                                           And finally, answer your goddamned phone calls

Did I leave anything out?

A Different Kind of Mask

“I want them to live again to the point where pain becomes art.”

Lawrence Durrell,  “Justine”

I have always loved masks.  Near sighted likely from birth, a fact which was discovered significantly later, I never minded stumbling around our neighborhood on Halloween, my already deficient depth perception further stunted by my Bugs Bunny mask.  To don a mask was a chance to become someone else,  and as I grew older my disguises became more exotic—a gypsy fortune teller with gold hoop earrings in high school, a Turkish harem girl in college.  My imagination, fueled by the old stories of the Venetian Carnivale dating back to 1162, knew no bounds, and I secretly dreamed of a masked ball where I would glide gracefully and soundlessly, recognizing and being recognized by a handsome prince, by touch and scent alone.

 

In 2002 I took the occasion of my daughter’s graduation from high school as an opportunity for us to visit Venice, and more specifically, the mask shop known as La Bottega dei Mascareri at the base of the famous Rialto Bridge where a lively market persists to this day.  Elizabeth Barrett Browning may have been speaking metaphorically when she said, “the soul’s Rialto hath its merchandise,” but I was subject to a more literal interpretation.  I wanted to buy a mask from the famous brothers Sergio and Massimo Boldrin, who fashion papier mache masks in the old Venetian tradition.  I picked out a good one, made by Massimo himself, and given the history it depicts—perfect for a doctor.

 

The mask is larger than my face and flat, hand painted with a crackle glaze to look very old, and it pictures a man in medieval clothing dancing around a bonfire,  wearing the peculiar bird beaked mask known to physicians of the plague years.  The beaks were stuffed with medicinal herbs thought to ward off the dread disease.  In just one scene, the mask depicts the horror of bubonic plague—the bird beaked man, the fire to burn the contaminated bodies and clothing, the “ring around the rosie” cheeks of the afflicted.  With some difficulty, I brought my prize home in a suitcase, only to find that it gave me nightmares.  Today it sits on a bookshelf in the study off our garage.   I can’t have it in the house.

 

My patients with head and neck cancer are all too familiar with the concept of the mask, but for them the mask has a different significance.  Fashioned of a material called Aquaplast, the mask starts as a thick sheet of perforated plastic.  Warmed in a hot water bath, the material becomes soft and pliable, and is stretched over the cancer patient’s head and shoulders where it shape shifts to appear like a woman’s fish net stocking, but without the softness.  The mask hardens to become a rigid immobilization device which is bolted to the treatment table.  In my field, precision is everything and the mask, custom made for each patient, allows the radiation oncologist to accurately target the cancer while sparing critical structures such as the spinal cord and the eyes.  Not for the claustrophobic, the mask is a temporary prison for seven weeks of daily treatment.  At the end of treatment, each patient is offered the opportunity to take his or her own mask home.  Most actually do.

 

Today at the biannual Multidisciplinary Head and Neck Cancer Symposium in Scottsdale, AZ, I saw something quite extraordinary.  In order to assist patients financially with these cancers, an organization out of Washington DC called 911 4 HNC mounted an exhibition called “Courage Unmasked”  (www.courageunmasked.org).  Cookie Kerxton, an artist who was treated for head and neck cancer herself enlisted other artists to transform radiation masks into works of art.  The results, several of which are on exhibit at the meeting, are objects of exceptional beauty, turning human suffering into inspiration and hope for others.

 

At the meeting, volunteers were handing out free posters depicting forty two of these beautiful masks.  When I get home, I will have my poster framed and I will hang it in the room where I examine my head and neck cancer patients.  I am hoping that the bright colors of the beautiful masks will lessen their fear, and transform their pain.  There is indeed great progress in the treatment of their cancers.

Primum Non Nocere

I don’t have much in the way of eyebrows.  They were victims of too much plucking back in the 1960’s and when you do that, sometimes they don’t grow back.  There’s a very nice woman in Solana Beach who shapes and darkens what I have left, infrequently, when I bother to think about it which isn’t very often.  I was in there about a year ago when she told me, “I won’t be at work for the next six weeks or so—I’m having some surgery.”  Never shy when it comes to these issues, I asked, “What kind of surgery?”  She said, a little too casually, “I’m having double mastectomies and latissimus flap reconstructions.”  I said, “Why are you doing that?”  She said, “Because I was diagnosed with ductal carcinoma in situ on the left, and I just want them both OFF.”  Ductal carcinoma in situ is what we call Stage Zero breast cancer—non life-threatening, but it does need to be treated because in some cases it can progress to invasive breast cancer.  Treatment options range from excision only, to excision plus radiation, to simple mastectomy for more extensive cases.  In NO case, unless the patient carries the breast cancer gene, BRCA 1 or 2, as Angelina Jolie did, is bilateral mastectomy the recommended treatment.

Again, I said to this nice forty year old woman with no family history of breast cancer, “Did you at least SEE a radiation oncologist for an opinion?  This is what I do for a living, you know.”  She said, “No, I did not.  My surgeon drew me pictures of the procedures, and he said I’d be back at work within a few weeks. This is what I want.  I have a six year old son.  I do not want to die of breast cancer.”  Her mind was made up.  In situations like this, I may offer an unsolicited opinion, but here my opinion was clearly not wanted.  This was the right choice for her.  It’s what she needed for “peace of mind,” and I was not going to stand in her way.  She had her bilateral mastectomies, and her reconstructions, and true to her surgeon’s word, she was back at work within six weeks.  She was very pleased with, and relieved by her outcome.

There are a couple of problems with this scenario.  First of all, my breast cancer treating colleagues and I have noted a somewhat alarming rise in the rate of double mastectomies for unilateral breast cancer in non BRCA positive patients.  The rationale for this is typically, “I want to do everything I can to reduce the chance of the breast cancer coming back”, but sometimes it’s “I want a matched set!”  What patients are often failing to realize, and are being failed by their physicians in terms of their education, is that the biggest risk they have of actually dying is from the breast cancer they already HAVE, not the breast cancer they might be diagnosed with in the future.  Once a woman has been diagnosed and treated for breast cancer, the risk of developing a contralateral breast cancer is about 1% per year, and the vigilance is stepped up accordingly—mammograms are no longer designated as “screening” but rather as “diagnostic”, and MRI’s are more frequently covered by insurance, not to mention the frequent blood work and body scans obtained in more advanced cases.

Second, prophylactic mastectomy and breast reconstruction is neither risk free nor does it often result in a “perfect breast”.  Infections can occur, implants can be extruded, flaps can fail, and even if none of these things happen, the resulting reconstructed breast is insensate—in other words, it doesn’t FEEL like a breast to the woman who is wearing it.  Even in a skin sparing, nipple sparing mastectomy, the nerve endings are cut.  If an abdominal flap is used, the abdominal musculature is compromised—important for women who are athletic and need these muscles.  The same goes for a latissimus flap.  Not to mention the fact that many woman who are diagnosed with breast cancer are still of childbearing age and many still plan to have children.  One can breast feed an infant with one breast, but not with bilateral mastectomies and reconstructions.

So if you have been diagnosed with breast cancer, please think long and hard about your treatment options and about what the goal is, which is to obtain local control of the cancer typically by either removing the breast, or by having lumpectomy and radiation therapy.  The “peace of mind” obtained by removing the opposite healthy breast in a BRCA negative patient is not only just a pleasant mythology, but is also potentially dangerous, putting a patient at risk for complications when she needs to be healing and considering the adjuvant therapy, whether that be hormonal therapy or chemotherapy or radiation to the chest wall or affected breast, which will truly reduce her risk of recurrence and extend her life.  And we physicians need to remember that principle of “Primum non nocere”—First, do no harm.  We don’t remove other paired organs just because one is diseased, and we shouldn’t be doing it with breasts either.  In my opinion, of course!

The Way I See It

When it comes to surgery for cancer, having a “positive margin” is a bad thing.  It means that when the surgeon said he “got it all,” even though he meant it with all of his heart, likely he didn’t.  For a woman undergoing a lumpectomy for breast cancer, that positive margin means a re-excision of the lumpectomy site or alternatively, a mastectomy.  For a woman who has just had a mastectomy, it means that she will likely be seeing me.

I saw a new breast cancer patient on Thursday, a very attractive woman in her early fifties.  She had undergone a mastectomy last March, and had a tissue expander placed at the time to facilitate a later reconstruction with a silicone implant.  The final pathology showed positive lymph nodes on her sentinel node biopsy, and a positive margin where the tumor was close to the chest wall.  She required chemotherapy because of her lymph node involvement, and radiation to her chest wall for the tumor cells that may have been left behind.  She finished her chemotherapy without any difficulty in June.  But instead of coming to me at that time, she elected to complete her reconstruction first.

The first time her expander was replaced with a permanent implant, in August, there were complications which resulted in a failed reconstruction. The plastic surgeon elected to take her back to surgery in November, and replace the implant, and transfer fat cells from her inner thighs to make the reconstructed breast rounder and more perfect.  When the patient saw me on Thursday, she was still not entirely happy with the result, and was looking forward to having additional fat transplanted in the upper inner quadrant.  She guided my hand to the area and said, “See?  The tissue is so THIN right there.”  I stared at her reconstruction in amazement.  It was one of the best I had ever seen.

But yes, there was a problem.  It was not a problem that she had concerned herself with.  The problem was that it was nine months after her mastectomy, and that no one had pointed out to her that a local recurrence of her breast cancer, for which she was certainly at high risk, is a harbinger of metastatic disease and death.  In other words, she had failed to grasp the fact that it was her cancer, and not her breast reconstruction, that she needed to pay attention to.  It took me the better part of an hour and a half to convince her that she should proceed with radiation BEFORE her plastic surgeon achieved the perfection that she sought, and BEFORE her cancer recurred, if it has not already.

I understand the importance of breast reconstruction, and of feeling whole, and feminine again.  But I also understand the evil nature of “the beast.”  I may be a curmudgeon, but I want my ladies to comprehend that it’s not about the boob and the plastic surgeon isn’t going to tell you that—that’s MY job.  First and foremost, pure and simple, it’s about getting rid of the cancer. That’s the only priority.  It’s just the way I see it.

The Techno-Freak in Me

At home, I have trouble working the audio-visual system.  A few years ago, my husband bought a television set for our family room with a huge screen, for better sports and movie viewing.  Gradually components were added on—a surround sound system, the keyboard to stream video from Netflix, the standard DVD player, and, a gift from a movie loving friend who knows how much I like foreign language films, a DVD player that plays movies released only in Europe.  The composite system required, at one point, five or six different remote controls to run and I was hopeless until Mick at the meat counter informed me that you could buy a single remote controller by Logitech that could run EVERYTHING.  I invested in one at Best Buy, but I confess–I still have no clue how to work it.

It is a mystery to me why I cannot figure out how to work the television or the coffee maker, but the inner workings of linear accelerators and cyclotrons, and the generation of high energy X-ray, electron, and proton beams pose no problem.  Thirty two years ago, when I started in radiation oncology, our tool box was very limited—treatment planning systems were rudimentary and “two dimensional”—in other words we could only visualize and calculate the trajectory of a beam from each direction separately, and sum the total, in one cross sectional plane of a patient’s body. Two developments in the last generation changed all of that: three dimensional treatment planning, where the body is reconstructed from a series of CAT scan images, along with intensity modulated radiation therapy, where the beams can enter the body from 360 degrees of rotation where tungsten rods not only shield the normal structures from every direction but also enter the path of the beam to block the “overshoot” of tissues beyond the tumor. “Star Wars” technology met radiation therapy at the turn of the millennium.

The last ten years have brought a new revolution in radiation oncology—the advent of the proton center.  In November I had the opportunity to spend a full day at an orientation for the new Scripps Proton Therapy Center here in San Diego. Six years ago, I traveled to the existing proton facilities at Loma Linda, University of Florida, Massachusetts General Hospital and MD Anderson as part of a task force to determine the feasibility of my own institution building such a center. I was surprised at that point in time to discover that the technology of proton beam radiation therapy had not advanced since my old days at the Harvard Cyclotron in the early 1980’s. The opening of the new Scripps Center will change all that—for the first time a scanning “pencil beam” of high energy protons will be able to “dose paint” the radiation directly onto the exact shape of the tumor, delivering the fastest, most accurate and potentially the least toxic radiation therapy ever.

So what does this mean for patients in an era of cost reduction and intensive scrutiny of new technology?  Of the utmost importance, it means that more and more children with cancer will be treated with a method which will not only save their lives, but will significantly reduce the risk of secondary complications from the radiation.  In 2010, 465 children with cancer were treated with protons.  In 2012 this number rose to 695.  For the children who receive cranio-spinal radiation for brain and spinal cord tumors, this means a 7 to 12 fold reduction in secondary malignancies and a significant reduction in loss of IQ compared to standard radiation therapy.  For patients previously thought to have incurable cancers such as hepatocellular carcinoma, local control rates of up to 80% are being achieved.  For patients with brain or spinal cord or bone tumors in critical areas which abut sensitive normal tissues, it may mean the difference between sight and blindness, or ambulation versus paralysis.

The critics of proton beam therapy cite the fact that the majority of patients currently being treated with protons are prostate cancer patients, where as yet no real benefit has been shown in terms of survival or complications over intensity modulated radiation therapy. This may change as we select younger patients with more aggressive cancers for the treatment. In the meantime, I remain as excited by this technology as I was when I first followed the physicist into the cluttered old cyclotron building on the Harvard campus in 1982.  Next month the techno-freak in me will be privileged to participate in the most advanced radiation therapy the world has ever seen.

Thank you to Dr. Carl Rossi for the statistics provided in this entry.

The Median Isn’t The Message

Since I am still recovering from Turkey Day laziness, I thought I would share one of my favorite essays with you instead of writing something myself.  Bear with me here because it’s long, but extremely instructive for cancer patients, their caregivers, their loved ones, and those well meaning friends who want to tell you everything bad that can happen.  It also explains why I’m still doing what I do after nearly 32 years of treating cancer patients.  The author, Stephen Jay Gould, was an evolutionary biologist at Harvard, who was diagnosed with an “incurable cancer” at age 40.  He lived another twenty years.  Here is what he had to say:

 

The Median Isn’t the Message by Stephen Jay Gould

My life has recently intersected, in a most personal way, two of Mark Twain’s famous quips. One I shall defer to the end of this essay. The other (sometimes attributed to Disraeli), identifies three species of mendacity, each worse than the one before – lies, damned lies, and statistics.

Consider the standard example of stretching the truth with numbers – a case quite relevant to my story. Statistics recognizes different measures of an “average,” or central tendency. The mean is our usual concept of an overall average – add up the items and divide them by the number of sharers (100 candy bars collected for five kids next Halloween will yield 20 for each in a just world). The median, a different measure of central tendency, is the half-way point. If I line up five kids by height, the median child is shorter than two and taller than the other two (who might have trouble getting their mean share of the candy). A politician in power might say with pride, “The mean income of our citizens is $15,000 per year.” The leader of the opposition might retort, “But half our citizens make less than $10,000 per year.” Both are right, but neither cites a statistic with impassive objectivity. The first invokes a mean, the second a median. (Means are higher than medians in such cases because one millionaire may outweigh hundreds of poor people in setting a mean; but he can balance only one mendicant in calculating a median).

The larger issue that creates a common distrust or contempt for statistics is more troubling. Many people make an unfortunate and invalid separation between heart and mind, or feeling and intellect. In some contemporary traditions, abetted by attitudes stereotypically centered on Southern California, feelings are exalted as more “real” and the only proper basis for action – if it feels good, do it – while intellect gets short shrift as a hang-up of outmoded elitism. Statistics, in this absurd dichotomy, often become the symbol of the enemy. As Hilaire Belloc wrote, “Statistics are the triumph of the quantitative method, and the quantitative method is the victory of sterility and death.”

This is a personal story of statistics, properly interpreted, as profoundly nurturant and life-giving. It declares holy war on the downgrading of intellect by telling a small story about the utility of dry, academic knowledge about science. Heart and head are focal points of one body, one personality.

In July 1982, I learned that I was suffering from abdominal mesothelioma, a rare and serious cancer usually associated with exposure to asbestos. When I revived after surgery, I asked my first question of my doctor and chemotherapist: “What is the best technical literature about mesothelioma?” She replied, with a touch of diplomacy (the only departure she has ever made from direct frankness), that the medical literature contained nothing really worth reading.

Of course, trying to keep an intellectual away from literature works about as well as recommending chastity to Homo sapiens, the sexiest primate of all. As soon as I could walk, I made a beeline for Harvard’s Countway medical library and punched mesothelioma into the computer’s bibliographic search program. An hour later, surrounded by the latest literature on abdominal mesothelioma, I realized with a gulp why my doctor had offered that humane advice. The literature couldn’t have been more brutally clear: mesothelioma is incurable, with a median mortality of only eight months after discovery. I sat stunned for about fifteen minutes, then smiled and said to myself: so that’s why they didn’t give me anything to read. Then my mind started to work again, thank goodness.

If a little learning could ever be a dangerous thing, I had encountered a classic example. Attitude clearly matters in fighting cancer. We don’t know why (from my old-style materialistic perspective, I suspect that mental states feed back upon the immune system). But match people with the same cancer for age, class, health, socioeconomic status, and, in general, those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say, tend to live longer. A few months later I asked Sir Peter Medawar, my personal scientific guru and a Nobelist in immunology, what the best prescription for success against cancer might be. “A sanguine personality,” he replied. Fortunately (since one can’t reconstruct oneself at short notice and for a definite purpose), I am, if anything, even-tempered and confident in just this manner.

Hence the dilemma for humane doctors: since attitude matters so critically, should such a sombre conclusion be advertised, especially since few people have sufficient understanding of statistics to evaluate what the statements really mean? From years of experience with the small-scale evolution of Bahamian land snails treated quantitatively, I have developed this technical knowledge – and I am convinced that it played a major role in saving my life. Knowledge is indeed power, in Bacon’s proverb.

The problem may be briefly stated: What does “median mortality of eight months” signify in our vernacular? I suspect that most people, without training in statistics, would read such a statement as “I will probably be dead in eight months” – the very conclusion that must be avoided, since it isn’t so, and since attitude matters so much.

I was not, of course, overjoyed, but I didn’t read the statement in this vernacular way either. My technical training enjoined a different perspective on “eight months median mortality.” The point is a subtle one, but profound – for it embodies the distinctive way of thinking in my own field of evolutionary biology and natural history.

We still carry the historical baggage of a Platonic heritage that seeks sharp essences and definite boundaries. (Thus we hope to find an unambiguous “beginning of life” or “definition of death,” although nature often comes to us as irreducible continua.) This Platonic heritage, with its emphasis in clear distinctions and separated immutable entities, leads us to view statistical measures of central tendency wrongly, indeed opposite to the appropriate interpretation in our actual world of variation, shadings, and continua. In short, we view means and medians as the hard “realities,” and the variation that permits their calculation as a set of transient and imperfect measurements of this hidden essence. If the median is the reality and variation around the median just a device for its calculation, the “I will probably be dead in eight months” may pass as a reasonable interpretation.

But all evolutionary biologists know that variation itself is nature’s only irreducible essence. Variation is the hard reality, not a set of imperfect measures for a central tendency. Means and medians are the abstractions. Therefore, I looked at the mesothelioma statistics quite differently – and not only because I am an optimist who tends to see the doughnut instead of the hole, but primarily because I know that variation itself is the reality. I had to place myself amidst the variation.

When I learned about the eight-month median, my first intellectual reaction was: fine, half the people will live longer; now what are my chances of being in that half. I read for a furious and nervous hour and concluded, with relief: damned good. I possessed every one of the characteristics conferring a probability of longer life: I was young; my disease had been recognized in a relatively early stage; I would receive the nation’s best medical treatment; I had the world to live for; I knew how to read the data properly and not despair.

Another technical point then added even more solace. I immediately recognized that the distribution of variation about the eight-month median would almost surely be what statisticians call “right skewed.” (In a symmetrical distribution, the profile of variation to the left of the central tendency is a mirror image of variation to the right. In skewed distributions, variation to one side of the central tendency is more stretched out – left skewed if extended to the left, right skewed if stretched out to the right.) The distribution of variation had to be right skewed, I reasoned. After all, the left of the distribution contains an irrevocable lower boundary of zero (since mesothelioma can only be identified at death or before). Thus, there isn’t much room for the distribution’s lower (or left) half – it must be scrunched up between zero and eight months. But the upper (or right) half can extend out for years and years, even if nobody ultimately survives. The distribution must be right skewed, and I needed to know how long the extended tail ran – for I had already concluded that my favorable profile made me a good candidate for that part of the curve.

The distribution was indeed, strongly right skewed, with a long tail (however small) that extended for several years above the eight month median. I saw no reason why I shouldn’t be in that small tail, and I breathed a very long sigh of relief. My technical knowledge had helped. I had read the graph correctly. I had asked the right question and found the answers. I had obtained, in all probability, the most precious of all possible gifts in the circumstances – substantial time. I didn’t have to stop and immediately follow Isaiah’s injunction to Hezekiah – set thine house in order for thou shalt die, and not live. I would have time to think, to plan, and to fight.

One final point about statistical distributions. They apply only to a prescribed set of circumstances – in this case to survival with mesothelioma under conventional modes of treatment. If circumstances change, the distribution may alter. I was placed on an experimental protocol of treatment and, if fortune holds, will be in the first cohort of a new distribution with high median and a right tail extending to death by natural causes at advanced old age.

It has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity. Of course I agree with the preacher of Ecclesiastes that there is a time to love and a time to die – and when my skein runs out I hope to face the end calmly and in my own way. For most situations, however, I prefer the more martial view that death is the ultimate enemy – and I find nothing reproachable in those who rage mightily against the dying of the light.

The swords of battle are numerous, and none more effective than humor. My death was announced at a meeting of my colleagues in Scotland, and I almost experienced the delicious pleasure of reading my obituary penned by one of my best friends (the so-and-so got suspicious and checked; he too is a statistician, and didn’t expect to find me so far out on the right tail). Still, the incident provided my first good laugh after the diagnosis. Just think, I almost got to repeat Mark Twain’s most famous line of all: the reports of my death are greatly exaggerated.