Boreal B[l]og

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.

I visited two elementary schools in the Sunnyside District to speak to the nurses about obtaining obesity data on their children.  Sunnyside is the only district in Arizona to mandate a nurse in every school.  Because of the nurses, fewer children are sent home with medical problems, and the nurses are able to immunize some of the children who haven’t completed their immunizations.  I know these days many Americans on both sides of the political spectrum think vaccines are dangerous; the diseases they prevent, like rabies, are still out there in the wild just waiting for us to let our guard down.  I find myself wishing they would get a case of measles.  Not complicated measles, which is not rare.  Just measles.  Maybe that would change their perspective.

All districts must check hearing in the 6^th grade.  But Sunnyside additionally weighs, measures and checks vision of their students pre-K, 2^nd, 6^th and 9^th grade.  Nobody else in the Tucson valley is doing this.  They don’t have extra money; they just decided it was important.

Because of their work, we have the first step to obtaining obesity data on middle school kids in Tucson.  From there, we hope to get the other districts involved and have county-wide data on public school 6^th graders, which likely would be some of the best data in the state, if not nationally.  I’m pretty excited about the prospect.

It was eye-opening to watch the kids leaving the school going home.  There weren’t a line of large SUVs and vans picking the kids up.  Many actually walked home.  Imagine that.  The houses down there aren’t six to seven figure ones up in the Foothills.  Their parents aren’t movers and shakers.  They can’t home school their kids.  They are too busy trying to scrape by.  If they don’t have public education, how will these kids get educated?  Or is it just too bad and they should just stay in entry level jobs and be house or yard cleaners because they can’t do anything else?

America has given three things to the world — liberty, the national park system, and public education to support a vibrant middle class.  None of these has occurred as quickly or as effectively anywhere else.  In 1966, I learned what LIONS Club stands for “Liberty, Intelligence.  Our Nation’s Safety.”  Exactly how are we going to educate millions of children without public education?  Who is going to pay for it?  Or will volunteers step forward?  Why not have volunteers step forward to save public education?

Will this be an America where people don’t vaccinate, and visitors will need vaccinations the way I needed a yellow fever shot to go to Africa?  Already, immunocompromised children can’t go to day care centers, because there are too many unvaccinated children.  Will this be an America where we end public education, because it is a government program, and all government programs (except defense, of course) are bad?  Should people should be free to do whatever they want, including logging the rest of the redwoods and old growth forest, mining the national parks, taking oil out of ANWR, because somebody rich has bought the land and can do whatever they want?  Is this why I, among only 7% of Americans, served America in uniform?

If we end education, health care, food stamps, social security and Medicare, we will have people on the streets the way we have stray animals, lots of people, because the fundamentalists would have banned birth control, too.  We’d have people dying horrible deaths from treatable conditions, the way stray animals do.  Isn’t that a death panel?  And I don’t consider a stray animal an “only,” having taken in many.  Indeed, I rank companion animals above the Norquists and the Newts of the world.  Reread that.

Those who espouse smaller government have not been in these schools, learned nothing from Katrina and have not been down to the county public health department.

I don’t know how big our government should be.  But I do know that leaving people unregulated is akin to a fraternity house on a Sunday morning, the economy a year ago, the 60 to 37,000% fold difference in frequency of medical procedures depending upon where you live and worse driving than we already see.  How much do we regulate?  As much as we need without doing too much.  And what would that be?  I don’t know, but we better start figuring it out as a country and soon.

In these pages, I have stated that I am not religious.  But I think we have a duty as human beings to help make our society better.  Sometimes by saying no, we make things better and by saying yes, we make them worse.  Sometimes we should leave people alone; other times, we should step in.  Those who argue solely from one side are as wrong as they are loud and nasty, and I have never heard an ideologue naturally laugh, not once, nor make fun of themselves, which healthy people do.

Those who read my columns are in general well off in life, probably wealthy.  One of my mottos is “Those to whom much is given, much is expected.”  Give of your time, your knowledge and your resources to make this country better.

Remember Colton?  He was the young man who lost his girlfriend and job the same week and was likely to face foreclosure.  He now has another problem—a really painful tooth.  It hurt so badly he almost went to the ED, but he owed the hospital $2000, so instead he took aspirin and eventually got better.  But we know he’s headed for big problems and costs, with no insurance or medical friends who will cut him a break.

Yes, Colton’s life would have been easier had he been better educated.  I saw first hand how he and his sister lost ground when they were home schooled, which requires both special students and special parents.  As the son of a public school superintendent and a sociology teacher, I admit my bias favoring public education, because with 300 million people, it is the only viable approach – unless, of course, one believes that the poor and people of color shouldn’t be educated.  We need volunteers in the schools and the schools need to put them to work.  I’m now an on-call volunteer math teacher, math being the biggest need, but I’m only one guy trying to put his money where his mouth is.  Congress bickers about the cost of health care, but I’ve heard few discuss the cost of Iraq, for years deliberately hidden from the budget.  I don’t buy regime change, otherwise we’d clean out Zimbabwe, Burma, North Korea and Sudan just for starters.  Iraq has oil.  America has poor and sick people.  For 8 years, I heard deficits didn’t matter, when I thought they did.  Funny thing how the other side has now decided deficits do matter.

 But back to teeth.  Dentistry is the forgotten part of medical care and few have dental insurance.  I had braces for 8 years.  I was so sick of them, I didn’t go to a dentist for decades after, until my wife pointed out my bad breath; I’ve since had a root canal and a couple of cracked teeth needing capping.  I’m lucky; I can afford preventive dental care which makes my problems minor.

 Yes, Colton should have taken better care of his teeth when he was a teenager.  I ask:  when you were a teenager, did you brush twice a day, floss at least once and use a Water Pik?  I sure didn’t.  So, I’m not about to throw the first stone.

 There was an excellent article in Slate about the difference between British and American approaches to dental care.  In the UK, it is expected one gets dentures early.  Here, bad teeth labels one a hillbilly.  Don’t believe me?  Recall patients or others you’ve seen who had poor dentition.  Didn’t you think of them a little differently?  I label people differently if they misuse grammar.  They label me differently by how I look, dress or the odd things I like to do.  We all pre-judge.

 But it’s more than prejudice; it’s health, and we know it.  SBE and bad teeth.  Heart disease and bad teeth.  Facial abscesses and bad teeth.  Bad breath and bad teeth.  Caries give rise to what some call world stopping pain, and if you’ve ever had such pain you can’t function.  Poor people tend to eat the wrong food, don’t know much about dental care, can’t afford the time or money to fix their teeth, often lose work and can be miserable.  Having suffered from miserable conditions, I counted my blessings I didn’t have to work at the time.  How do these people put up with it?  Same way Colton did—aspirin, somebody’s codeine and a lot of hope.

 Let’s not forget dental care in our discussion of basic medical care, for prevention saves money.  A simple root canal is $1100.  Aren’t we supposed to help people relieve misery?  So why aren’t we doing it?  We’re talking teeth here, not Roux-en-y surgery.

 Colton needs to get on AHCCCS, but that won’t get his teeth fixed.  He’s 22 and headed for dentures before he’s half my age.  This was once the richest country in the world, and we could have dealt with these problems if we hadn’t decided upon socialized world policing and socialized nation building with our socialized military.  It’s time to admit we can’t afford our overseas commitments.  But even the Blue Dogs are silent on that one.

 Once again, here are 4 things we could afford that would help:

1. Cover all children’s medical and dental care until they are 18.
2. Limit the maximal debt people can have for medical/dental conditions.  I propose $50K but I’m flexible.
3. Put in an error reporting system, which I predict will decrease bad outcomes and malpractice case filing through learning.  Make it anonymous and non-discoverable.  And get it running in 6 months.  I know how to do it.
4. Tie any cuts in physician reimbursement to liability reform and a reporting system. 

I’ve been saying this for years.  Let’s try it.  If you disagree, then I recommend Oscar Rogers’ two step approach from Update Thursday.  It’s on my blog, under 2009 Reality Check, so you can click the link below:

http://www.hulu.com/watch/38477/saturday-night-live-update-thursday-fix-it

Step 1:  Identify the problem.  We’ve done that, so we’re half way there.

Step 2:  FIX IT!!