WH0 CAN I TRUST???

My mailbox reaches the flood stage each day, overflowing as waves of medical information from sources which I know to be reliable (i.e., The New England Journal of Medicine, the Medical Letter and a few others), and sources which have suddenly popped up and pass for authentic reliable information and advice (often with names including the words"institute" or "association") appear.

My problem is that most of what I receive comes from sources which do not disclose whether they represent vendors of drugs and equipment or are truly independent. How can I trust information which comes from cloudy sources which may be forwarding advertisers' hype?  Why are providers of medical information not required to fully disclose conflicts of interest to the people who write the prescriptions and orders for the products they are promoting?

Even more confusing are academic sources. How do I know whether a report from a well-known investigator or institution is truthful, is part of an effort to attract more and better paying patients, or part of a plan to attract more grant money to support a training or research program?

It would not be improper for patients to ask physicians for their evidence supporting medical diagnoses and physician recommendations for testing and treatment and then to further ask the physicians for hard information about the reliability of the source of that information. The patient may get some strange looks and responses to such questions, but the physician being questioned will be more careful with, and respectful of, the person who asks. And as a patient - that's what you deserve.

A CONSULTATION WELL DONE

When I was in active clinical medical practice, some times I ran late.  Patients could find themselves in the examining room a quarter or half hour after their scheduled appointment had passed.  I would explain that when an emergency arose, I had to deal with it and interrupt my normal appointment flow.  And then I explained that I would do the same for them if the need arose - and kept my word.

So, when my Cutaneous Oncology consultant ran late today for my scheduled appointment, it was not an issue. I kept in mind the reason I was in his office, mentally highlighted his credentials and skill set - and was rewarded by an excellent consultation experience.  The remainder of this blog will deal with my definition of an excellent Oncology (Melanoma) consultation.

1. Timeliness.  My consultation was scheduled in a timely manner, neither too quickly (which would have denied the consultant the opportunity to communicate with other doctors involved in my care or review my records) nor too late (after critical time periods for care had passed).  Adequate time was reserved and the consultant extended our session to cover important subjects.

2. History. The consultant was well-prepared through his discussion of my "case" with other professionals involved in my care and his review of my electronic medical record.  But he went through many targeted questions, eliciting additional information relevant to my melanoma, my general health, and specific conditions which would need to be considered before treatment recommendations could be made.

3. Physical Examination.  A medical assistant recorded routine vital signs,  but the consultant performed a targeted thorough physical examination.  An experienced competent physician, could cover all of the relevant physical diagnosis issues in five minutes or less. He did.

4. Discussion of Findings/Formulation of  Evidence-BasedTreatment Plan.  In a careful, thorough, humane and frank manner, and without leaving out important considerations, the consultant reviewed pertinent findings in my medical records, history, and physical examination.  He then discussed relevant data from scientific studies of melanoma from his own vantage as a hands-on treating physician, as well as an academic expert on the disease.  Going further, he discussed the strengths and weaknesses of the available scientific data, current professional biases among oncologists, the economics of treatment, and his conclusions concerning the application of all of the data he collected, and evidence-backed scientific  data to formulate a prognosis and treatment plan.  Throughout this process, he distinguished his professional opinions based on personal experience from positions favored by the weight of reliable data. All of this discussion was carried-out in understandable language, though reference to some of the currently available pharmaceuticals and intricacies of acquired resistance to treatment by melanoma and the biology of the immune response of one's body to melanoma may have been difficult for my wife, who accompanied me.

5. Planning for The Next Step. I left the consultation with a clear understanding of the next steps to be taken by the consultant and his plans for further communications with my other physicians and me.  

Some of the information I gained today was serious and disturbing. But there was a sense of completeness, professionalism and competence that made the consultative experience worthwhile.  After all, adults need to discuss major health issues seriously and make serious informed decisions.  

I left the consultant's office to attend a biomedical ethics committee meeting elsewhere, reassured by the high quality of the care I had just received. 

"SMART" CANCER OUTWITS PHARMACEUTICAL/MEDICAL RX

The most effective treatment for professional arrogance among health care providers is years of  experience. New doctors imagine themselves to be like knights of old, battling and defeating life-threatening disease if they attack with sufficient resources and vigor.  Older doctors understand that a more appropriate description may be that they are  more akin to medical anthropologists, watching patients' disease processes reveal themselves, and defy medical and pharmaceutical attacks.

A very recent report from the National Institutes of Health.indicates that Dr. David Solit, and his colleagues,  of Memorial Sloan-Kettering CancerCenters has "...discovered a new way that melanoma cells may become resistant to treatment with vemurafenib (Zelboraf), a targeted therapy that has produced dramatic, if transitory, results for some patients with advanced disease." Solit discovered that  resistant melanoma cancer cells "...produce a shortened version of the mutant BRAF protein that vemurafenib targets. The shortened protein—which is missing its middle section—is active even in the drug's presence, the researchers reported online November 23 in Nature."

The report indicates that there is some hope that vemurafenib, when  combined with another drug (s) may overcome the resistance which has caused treatment response to be transitory.  When one considers that a 1 cm. tumor mass may contain 10 to the ninth cancer cells, and there is a significant likelihood that there will be other treatment-resistant mutations among those cells, it becomes evident that therapeutic enthusiasm has to be tempered by hard cold statistics.  In an environment in which a single mutation may confer a significant competitive advantage to the mutation-carrier cell and its progeny, one should be cautious about provoking curative expectations.

I hope that oncologists share the statistical likelihood of mutation vs. cure with patients when offering courses of difficult, expensive, time and resource-consuming treatment. Isn't that what "informed consent" is really about?

THE DRILL

Professionally, I am accustomed to using the shorthand term RoRx for radiation treatment, so that's what I will use in this posting. Of course, in the days when I used "RoRx" I was the doctor and now I am the patient.  Very very different roles.

I started my treatment on November 30, the first of 25 scheduled.   The third day, of my  therapy experience in RoRxland was memorable.  Again, I was impressed by the professionalism and competence of the physician and radiation therapist community with whom I came in contact. This was not childs' play and I was treated as an informed adult - after the staff had done its work to inform me of what was going to happen and what I could reasonably expect.

In the treatment room there are two major features, the Varian Linac  (linear accelerator) and the treatment table. I had been fitted for an immobilizing treatment mask  several days earlier and that mask noisily clipped to the table on which I was lying on my back, locking me in place. The difficult chore was obeying the instruction to not attempt to help the staff who were meticulous in moving me into the exactly right position.  Finally, when I was lined up to their satisfaction, the Linac was turned on with buzzing and flashing lights.  The table wiggled and jiggled as it positioned me to receive the radiation in precisely measured doses. 


A few minutes into the RoRx treatment, lights began to flash and a loud penetrating horn signalled a fire drill.  You may be able to imagine my thoughts as I considered the possibility of a fire, or natural disaster, in the midst of an RoRx session, with me firmly affixed to the table(sort of like a pinned butterfly in a collection) The drill must have ended successfully because I received reassuring advice from the technicians, no fire fighters came rushing in to rescue me, and I have no visible indications of any untoward damage.  It was "just a fire drill."

Fifteen minutes after the Linac started, I was finished.  No immediate pain or discomfort. No impediment to walking out of the room or -  later, driving my car.  The problems with treatment will come after a  number of doses and I left with prescriptions and medication to deal with the complications of RoRx at the time when intervention will be needed. In the meantime I will see a nutritionist in several days to work out our anticipated response to difficulty in taking nourishment.

Treatment is no picnic, but there is real comfort in my belief that the people who run the asylum are competent doctors and therapists and not the patients pictured in a different type of medical facility, like the one featured in "One Flew Over The Cuckoo's nest" - but that is another story!

TOO MANY CARDS TO SHUFFLE

I have never been a collector of other people's business cards nor have I been anxious to pass out my own. But suddenly, I have a stack of business cards from people I barely know, but who will play an important part in my life and treatment. I have glued them into my blue "RoRX" binder.

As I said earlier, I have an environmental disease, malignant melanoma, probably associated with lots of unprotected sun exposure when young and when sunburn and tanning were promoted  as culturally appropriate, In those days, the "healthy look" included a significant tan, but if one's ancestry included a fair skin, that look presaged trouble years later as strange spots became cancerous and spread.

So now I am surrounded by people whose business cards not only reflect "MD" and "RN" status, but FACR, RTT, Research Coordinator, PH.D, and BSN appellations as well as the initials of the various professional groups and associations to which they belong.  As a person who practiced hematology (involving malignant oncology) I note that medical care no longer reflects a solitary physician-controlled activity, it reflects a team approach involving people who work with - but not necessarily for - the doctor in charge.

Years ago, I  received a published research paper from a university medical school professor whose patient I had informed about the nature of the procedure to which that academic had convinced him to participate (I asked the patient to ask the professor about the benefit that he - the patient - would receive from participating in an invasive and potentially dangerous procedure) bearing the inscription "to Henry Kaplan, MD, without whose help this paper would have been published ___ years earlier"  I consider it a welcome change to see the inclusion of individuals in care who believe - and act on the principle - that he and she are responsible for providing highly competent care to an informed patient even though even though the individual's business card does not say "MD" or "RN".

I'll figure out all of their names somewhere down the line.  I'm sure that I haven't finished accumulating their printed business cards. Pictures on those cards would be a nice addition.

Yesterday, I spent 3 hours at the nearby university hospital which will be providing me with radiation oncology services, met at least 8 non-physician people previously unknown to me and left the facility with the feeling that I had been well cared-for by well trained highly competent professionals who took satisfaction from the work they were doing. 

Medical knowledge has improved. And so has medical care.

A WISH BEFORE SURGERY

My surgeon called yesterday to tell me that he had accomplished every reasonable goal we had talked about, for the surgery performed 9 days' earlier.  It is comforting to know that perhaps those prayers and wishes I had before the surgery were answered. 

My prayers and wishes were probably a little different what my readers might imagine.  So let me share them with you - to give you the advantage of my years of medical practice, sometimes in the operating room when things did not go well during a procedure.

I wished my surgeon a really good night's sleep.  I wished him a terrific relationship with his spouse and a home (including parental) life free of tension and difficulty. I wished him enjoyment of his surgical practice and a good professional relationship with patients, with his surgical team, with the nurses and staff people caring for me, and the hospital administration of the institution where he performs surgery (so that he has the environment, equipment, staffing and supplies appropriate for the day's work).  I wished him the ability to focus specifically on the issues at hand when he performed surgery on me, to the exclusion of any possible distractions, even momentary ones.  I wished him freedom from the oppression of economic burdens, good transportation between his home and the hospital, and a bright sunny invigorating morning which he could enjoy in good health. And I wished him knowledge competence and judgment appropriate for the procedure at hand.

If all of these prayers and wishes were granted, I - the patient - would do just fine. 

And I guess that's what happened.

THE "RIGHT" APPROACH - BUT NO GUARANTEES

The recommendations for surgery were interesting, but I had treated a sufficient number of patients with this aggressive form of skin cancer, and chose to discuss a preliminary option with my physicians.  As described a recent blog post, the purpose in having a  medical test is to get information which will substantively affect patient care decision-making. And the PET scan ordered by my physician, which showed no activity outside the known location of metastatic melanoma, allowed me to accept my physicians' advice to have surgery.

Did this PET scan  offer me a guarantee? No - because no test is 100% accurate or complete (particularly when looking for a few malignant cells outside the known focus of 10,000,000,000 which a cubic centimeter of tumor  may contain). But having the test was rational, appropriate and medically indicated.  I had the surgery six days ago.

Pathology pending.  Further treatment plans pending. More to come.