Archive for December 10th, 2009

HORSE SENSE, MEDICAL SENSE. BET ON THE ONE WITH THE MOST LEGS

December 10, 2009

A friend of my wife, who still rides horses at age 79, recently had a breast biopsy that showed cancer, estrogen receptor positive, nodes negative.  She had breast cancer 28 years ago, but no recurrence, so this is almost certainly a second cancer.  She was placed on Tamoxifen, appropriate for this condition.

A week back, she was told she needed to be seen immediately by her oncologist.  I’ve not had cancer, but every time I see a physician, I fear the worst.  My vision changed recently, and I started thinking of cataracts and macular degeneration, even though I saw perfectly through a pinhole, a classic manifestation of astigmatism.  I’m starting a cataract in my right eye; my maculae are fine, so I have garden variety astigmatism.  This woman and my wife were thinking bad scenarios and wondering why nobody told her what was going on a lot sooner.  Wouldn’t you worry and wonder why nobody said anything sooner?

So, my wife brought a bunch of papers back from the barn, all dealing with genetic markers in the tumor and risk of recurrence.  I’m amazed at how far medicine has progressed since I practiced.  I’m less impressed by how well medical personnel deal with statistics.  The woman was told she needed to start chemotherapy immediately.  That’s obviously bad.  It is worse, however, because she is absolutely phobic about chemotherapy.  Don’t laugh.  Any neurologist who has given intrathecal cisternal Amphotericin B to a patient with cocci meningitis knows that when the physician (conditioned stimulus) arrives for the injection, there is a conditioned response of vomiting by the patient.

This woman had a recurrence score of 35.  That is based on 21 genetic markers, and the score goes from 0 to 100.  It is not a ratio scale, so 35 isn’t 7 times worse than 5.  If you want the details, go to:http://www.oncotypedx.com/ and look under Healthcare Professionals.

Several studies were quoted, and while the science was good, the writing was less so, which made ferreting out facts difficult.  One study said that she had a 24% risk of recurrence in 10 years on Tamoxifen alone.  In 10 years, this woman will be 90; her current life expectancy is 9 years.  Another study quoted a 14% risk on the new chemotherapy and 42% risk without it, differences clearly statistically significant:

After looking at the paper more carefully, two further graphs suddenly put everything into clear focus, even given my astigmatism.  A bar graph showed the absolute percentage of increased risk with and without chemotherapy.

Because this woman had a RS of 35, she was told she needed immediate chemotherapy.  This bar covers RS from 31 to 100, not stated in the article, and this woman is at the low end of that range.  So, I wondered, is she not being grouped with a lot sicker patients?  I then went to the line graph, specifically looking at node negative cancers (black line at the bottom):

While difficult to read, a RS of 35 means a 15% of distant recurrence (bad), with 95% confidence intervals of (11%, 19%).  That means we don’t know her exact risk, but we are highly confident it lies between those values.  Note, however, where the y-intercept is:  where RS is 0, her risk is 5%.  Therefore, I think her increased risk is 10%, not 15%.  Note that if she had a RS of 25, she would have a 10% risk.  I think the Web page should have commented on this.

Finally, go back to the first graph.  The curves don’t diverge until at least 2 years, and because the sample size is small for RS >30 (47), I suspect statistical significance wasn’t reached for at least four years.  This woman is nearly 80.  Summarizing, she has a 15% chance of distant recurrence in 9 years and a life expectancy of 9 years.  The increased risk of distant recurrence doesn’t kick in until 3-4 of those years.  Her increased absolute risk is under 10%, not 28%.

Should she get chemotherapy?  That is her decision, not the oncologist’s, the insurance company’s, or mine.  But what she needs is a clear statement of the potential risks and benefits.  The risks are chemotherapy in an elderly lady who is likely more sensitive to the side effects, including difficulty using her fingers and walking and fatigue, making it impossible to ride her horse for 6-12 months.  We are now getting into the “art” of medicine, which is important, but must follow giving the patient the information she needs to make an informed decision.

I believe she needed an appointment, but the “come in immediately,” approach was unfortunate (my wife used “appalling”).  Testimonials should also be removed from the science portion of company Web pages.  Busy physicians need better summaries of data, and if studies are mixed, there needs to be unusually clear writing.  Summaries are good, but the information that significance kicked in after 4 years in this lady’s group was important in this instance and found only after a lot of work.  A scatter plot of RS and outcome would have been helpful, since grouping data throws away information.  What we need is somebody who understands statistics, medicine, and knows how to write clearly.  I know an individual who can do that.

We should treat patients as unique individuals who are anatomically and physiologically similar and respond in similar ways pathologically.  Each of us has emotional, occasionally irrational approaches to life.  In medicine, these responses may be detrimental but must be validated.  When I practiced, data were my friend.  I told patients the risks and benefits of procedures, like carotid surgery.  I told them the two ways I could be wrong (recommend a bad thing, not recommend a good thing), tell them what the literature showed, give them my opinion, and then allow them to make what I felt was an informed decision, based on my use of the history, physical, lab, knowledge of the individual and known risks and benefits.

It is a shame that in the face of good data, that this woman was put through a death scare.  I have long felt medicine needs clinical statisticians who know how to communicate, which is why I took time, effort and money to get my statistics degree in addition to my medical degree.  This instance tells me that despite the disinterest I encountered, there is still a need.  I worry what may be happening in other instances.

Over the years, most of my statistical consulting was for free.  This was, too.  But never have I felt as useful to a patient as I have here.  She was not going to go through chemotherapy and worried it was the wrong decision.  I helped her realize that for her, the decision made a great deal of sense.  And that’s what informed consent is all about.

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CONTINUING ON IN THE FACE OF SOME REALLY BAD S—

December 10, 2009

Well before the Cessna Grand Caravan cleared the mountains near Fairbanks, Nancy, a vivacious fortyish woman next to me, started talking.  We were traveling to Arctic Village, 235 miles northeast; from there I would fly over the Brooks Range in a smaller plane, landing along the Aichilik River on Alaska’s North Slope, near the Arctic Ocean.

Nancy told me that she and her husband, Jim (both names changed), who was dozing in the single seat on the other side of the aircraft, were going to a different river on the North Slope for their trip.  As she talked, I realized they were as familiar with this country as I was with the Boundary Waters, except “their country” was 20 times bigger and vastly more remote; the last road we would see for two weeks was behind us.

I noted that her husband looked not just older, but his hair was patchy and almost ravaged.  I didn’t say anything, and Nancy soon elicited from me that I had once practiced neurology.  Jim was an exceedingly smart geologist who several years earlier had been diagnosed with a left hemispheric astrocytoma and forced to retire.  These tumors are malignant, and at a young age grow slowly.  But they eventually get nastier and will kill in 5-10 years.  Jim was treated at Duke, which is about as far from Fairbanks as London is from New York.  She was remarkably upbeat for somebody who had gone through a hell I hope I never will, and they were doing the trip while they still could.  I was sitting next to a saint.

“He has some trouble word-finding,” she said, but with a smile that would light up an Arctic winter, added, “he just loves this country, and I do, too.  We’re going as long as we can.”

We talked about Alaska, the time passed quickly, and we soon landed on the dirt strip at Arctic Village.  The weather over the Brooks Range was poor, and many of us to be shuttled in.  Jim and Nancy would go in the mid-afternoon; I was in the last group and wouldn’t depart for 8 hours.  We put all our gear by a small building, new from the previous year, unstaffed and christened “Arctic Village Visitor Center.”  One hour took care of seeing the village; when I returned Jim and Nancy were inside, looking at a large map of the Refuge and nearby Yukon.  Jim was pointing out, with minimal but noticeable dysphasia, some of the areas where he had traveled.   I looked with awe and envy at his travels.  I was never going to see that incredible country and he had.  On the other hand, I’ve seen sixty, and he would likely not see fifty-five.

Later that afternoon, Nancy suggested Jim and I walk across the airport to a nearby lake.  Jim had a quick pace, was able to identify a lot of plants and birds, and soon, like his wife, asked me what I had done.  When he heard I was a neurologist, he said, “I have this s— growing in my brain.”

This was one of those difficult moments where one has to quickly decide whether to lie, tell the truth, change the subject, or just run away.  I knew what Jim had, but he didn’t know I knew.  I didn’t want to act curious; I just wanted to be somewhere else.  God, I thought.  What do I do?  Just then a couple of loons called in the distance, so I took option number 3:  I quickly changed the subject to loons.  I felt like a coward.  Whether Jim noticed, I’ll never know, but during the rest of the walk, we didn’t discuss his medical condition.  We birded, spending about a half hour sitting beside one of the many lakes that surround Arctic Village.  Jim pointed out the plants to me, and I just worked like mad keeping the subject off astrocytomas.  I’ll never know what he thought of me, but I sure learned much about the local flora.

We eventually returned to the airport, and later, Jim and Nancy left for their trip.  At 7 p.m., the guide, Aaron; I; and pilot Kirk Sweetsir, a Rhodes Scholar (in another life, as he puts it), finally departed.  When we saw the wall of black ahead over the Continental Divide, Kirk turned around and set us down in ANWR, along the Sheenjek River, half way to our destination. We had the stove, dinners, breakfasts, and a dry place to camp.  The other group that did get to the North Slope that day had none of those four things.

But all of us had functioning brains and bodies that would get us through eleven tough days in ANWR and hopefully for many, many years after.  But there are no guarantees.  Jim is one of the reasons why I go when I can.  Bad stuff – s—, if you will – happens, and it can happen to anybody, good or bad, young or old.  I’ve had some nasty medical problems, but compared to Jim, I’ve had nothing.  He’s still going while he can, able to carry gear, navigate and love his wife, who copes with a grace I wish to emulate.  Both of them have and will continue to see country that few will ever see.  They are special people, truly living fully while they can, as we all should.

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Posted in 2010, ALASKA TRIPS, ANWR, AICHILIK RIVER 2009, UNPUBLISHED OUTDOOR WRITING | 1 Comment »