Up Island Eggs
Rumination 1 - Reprise
posted Monday, 5 February 2007
Tom wrote this about his cancer and we sent it out to the mailing list of people who wanted to be kept uptodate on his condition. Someone suggested Tom publish it, so here it is.
I am rather amused that the message I started teaching to my bioengineering graduate students at Columbia in the early 1970's has come home to roost with me as the example. A little background for those of you not involved with biomedical research is in order.
Back then, and even to a large (but I hope smaller) extent today, there was (and is) palpable tension often leading to overt animosity and conflict between clinicians and bench scientists. It pained me every time I observed it even though I cannot recall a single incident where it was directed at me (beyond the required occasional jab). I pondered this problem at some length because it was getting in the way of my students acquiring the interpersonal skills they needed to succeed in their chosen field. I came to the conclusion, that it was a consequence of what might be described as evolutionary pressure during the training process. Put in one sentence, science is analytic and clinical medicine is synthetic. By that I mean that training as a scientist reinforces the mandate that conclusions are not drawn until all the data is in and even then accepted only tentatively until independently verified. Training as a clinician requires learning to make life and death decisions on (almost always) partial, incomplete data and inadequate models. The clinicians need help right now or in 24 hours at the most. Scientists are trained to look aghast at that attitude. Clinicians are frustrated by promises of help that hardly ever materialize in time for the patient they are currently treating. The exigencies of the situation mandate that the scientist/engineer learn to communicate in the clinicians language and not vice versa; an approach I managed to instill in some of my brighter students.
What has that got to do with me and my present situation? Twenty months ago, I was diagnosed with a mucous melanoma, a cancer so rare that the incidence is reported at around 1:10,000,000 and only 1% - 8% of all melanoma in Europe and the US. (It is genetically different from cutaneous melanoma in important respects.) About the same as your chance at winning the state lottery. (I was and continue to be teased about a rare person deserving a rare disease.) The tumor was detected very early so everyone agreed that the sensible course was to remove the tumor with that largest practical margins (in the upper jaw that is not easy). So I underwent my first surgery, a right maxillectomy. Dr. Norris of Dana Farber did a remarkable job that to a large extent saved my ability to speak even without the prosthesis in place. (The prosthesis is like a large, elaborate upper plate, produced by another genius, Dr. Jackson - but that is another story.) I doubt that there are half a dozen surgeons in the world who could replicate the technical success of the operation. According to the pathologists, the removed tissue was free of cancer at the margins.
Because the tumor is so rare, no one really can say or predict what can be expected to happen next. So we agreed that a course of radiation therapy to the site of the tumor was probably a good idea although I was told repeatedly that there is no way of predicting whether it would do any good. The conclusion of an article based on all 48 patients seen over 13 years (Arch Otolaryngol Head Neck Surg. 2003; 129: 864) is "The addition of radiotherapy tended to decrease the rate of local failure (P=.13) but did not significantly improve survival (P=.73) because of the high rate of distant metastasis disease." The radiation therapy itself consisted of six weeks of week daily travel to Hyannis by air; essentially an all day affair given the airline schedules. (I am most grateful to Cape Air for providing all this transportation gratis under their Angel Flight program.) What I did not expect was that it took me eight months after the end of the therapy itself to recover my former strength and activity level. I spent most of that time sitting exhausted in my recliner. The dire warning preceding the radiation was to expect massive pain, which never developed and some exhaustion. It was a completely pain free and totally exhausting experience.
About nine months thereafter, on a routine follow-up PET scan on which both Dr. Norris and I expected to see nothing, a hot spot was seen on a lymph node which, upon ultrasound guided needle biopsy (a totally benign, painless, minimally invasive procedure) a couple of weeks later turned out to everyone's surprise to be positive for metastatic melanoma. A very careful re-review of the scans by additional radiologists (all extremely competent) failed to turn up any signs of additional hot spots. The accepted wisdom, with which I concurred, is that if there is only a single node involved it should come out - if there is multiple node involvement then doubt is cast on the utility of surgery because if the greater likelihood of distant metastatic disease spread by the circulatory system. So, I had last week's surgery; when they opened me up they found about four other obviously malignant nodes that had not shown up on the scan (for reasons unknown and no theories). Of course they took them out and checked others further down stream to make sure they were clean. The surgery was, as I had expected given the surgeon, technically perfect. I have full range of motion of my arm and shoulder, never any pain, and I am healing nicely. A very recent article (N Engl J Med. 2007 356:285) states "Only about 20% of patients with positive sentinel nodes have metastatic disease in nonsentinel nodes if complete lymph-node dissection is performed..." I luck out again, but then I have a history of never winning raffles or door prizes.
I am, by one way of looking at it, 0 for 2. My retrospectroscope, which fails to have the 20/20 vision with which it is credited, is still not sure whether the radiation treatment was worth it. By a 60:40 odds, I suspect not, given that it robbed me of 8 out of 18 moths of productive time. Yet each decision, based on a synthesis of the information available at the time, was, in my opinion, flawless. (Calls from eager liability lawyers will most definitely not be welcome.)
The pathology reports from the current operation will become available early next week and will provide some hints as to how aggressive the melanoma is. We will be talking to Dr. Hodi, a melanoma oncologist at Dana Farber on the 26th. There are some experimental treatment protocols, known collectively as polyvalent melanoma vaccines which stimulate the patients immune system to fight the melanoma. What I do not know is whether any of these are suitable for mucosal melanoma or what the side effects may be (although rumor has it that they are mild). They are clearly less than the currently used high dose interferon therapy, which has horrible side effects and which I will not consider. Radiation is almost certainly also out, because it is too local.
I want to avoid any possible misunderstanding of what I have written. Nobody made any mistakes! Nobody gave me questionable advice! Everyone involved (surgeons and radiotherapists) did their jobs at astronomically high levels. That the outcome is not what anyone had hoped for is *nobody's* fault (except possibly that of my immune system). That clinical medicine is synthetic at its core is simply illustrated by my example. My father, who wrote one of the first text on cardiology had an aphorism that he coined and often repeated: "When it comes to medicine, the best is barely good enough." In my case, how barely is still to be determined.
What I will be adamantly insisting upon from here on out, is that quality, not quantity, of life be the overriding consideration. "The road to Hell is paved with good intentions" might as well have been written for clinical medicine.
Stay tuned (or tuned out, if you prefer).
Cheers,
Tom.
comments (2)
1. Pat Helgerson left...
Monday, 5 February 2007 3:57 pm
Tom, I too have had radiation and it does leave you with no energy. Getting
out of bed is a chore. Keep your chin up as a good attitude is the best
medicine you can get!