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I have been installed as President of the Alabama Academy of Family Physicians. The work should not be too hard and on occasion should be rewarding (or at least ego-boosting). Such was the case the other day when the Executive Director asked me to recall a patient from “my early days” that had made an impact so he could publish my thoughts, thus officially making me an old geezer. I thought back, thinking of the the heavy snow drifts I walked through to get to the hospital (unusual weather in Portsmouth but it was before “climate change”), recalling the large hill that I had to walk up to get both there and back, and this was the patient’s story I chose:
In April of 1987 when I was an intern at Portsmouth Naval Hospital I saw a 54 year old male patient for fatigue and discovered a previous diagnosis of iron deficiency anemia. He was again anemic. He was subsequently found to have Stage 4 colorectal cancer for which he received treatment. About 6 months later I admitted him from the emergency department (where I was working after finishing internship while waiting for training in Undersea Medicine) with jaundice. The ward team provided aggressive care but he died anyway.
The sad part of the story is that this patient had been seen by one of my intern colleagues in July of 1986 (the first month of our internship) for a complaint of fatigue. An iron deficiency anemia was initially found at that time. He was placed on iron, felt better, came back for follow-up, and was discharged from care. No follow-up to identify the cause of the anemia was done at that time.
Though the snow is less in Mobile and the hills less steep, the lessons I took away from that patient are still indirectly shared with every resident and student I teach:
1) It is my belief that quality care should not be dependent on specialty or level of training. My colleague should have consulted with the attending physician who was sitting in an office on the unit (and may have). My colleague could have read about the work-up of anemia after the visit and called the patient back. Being young and inexperienced, he appropriately treated the symptom but did not look for the disease. Avoidable mistakes such as this are not acceptable. We try very hard to put systems in place in our practice so that when the patient receives care, regardless if delivered by a faculty member or from a trainee, it will be predictable and of high quality.
2) Colon cancer is not a pleasant way to die. This patient was diagnosed with a rigid sigmoidoscope (a firm, hollow, silver tube about 2 feet long). Though we knew that early detection of cervical cancer saved lives, we knew little about early detection of breast and colon cancer. We now know that through use of colonoscopy and home stool testing, lives can be spared. I would like to believe that this patient, who was of an age that screening is now indicated, would have potentially been spared this death as the result of a caring family physician facilitating this screening. In our practice we have made early detection of eminently treatable cancers such as this a priority. We all work to assure that our patients have access to these screening tests.
3) We are all going to die. Having a terminal illness makes this likely to happen sooner. There comes a time to move to comfort measures. I want my faculty, residents, and students to be advocates for our patients in disease prevention and treatment. We also need to be advocates for moving from cure to comfort when it is appropriate. In my patient’s case, the Naval Hospital was his “provider.” We did not make that transition easy for him. I am afraid to say we have not gotten much better at this in the last 25 years.

Why, when we spend such money on health care, do we not do better when we measure ourselves against other countries regarding preventing cancer deaths?  My theory as to how we came to this place is three-fold. First, the public has difficulty understanding small probabilities. Sometimes, when presented with a scenario, they see a 1% risk as very high (my 40 year old friend got breast cancer and you are telling me not to worry? I have a ONE PERCENT risk!). Sometimes they see it as very low (sure I smoke, but of all the people who smoke NINETY NINE out of 100 don’t get lung cancer). As a consequence, Americans tend to participate in risky behaviors, spend personal money ineffectively on preventive services and don’t demand that we as a country spend money effectively in aggregate. Secondly, Americans want value for their health care dollar and believe they are getting it (but believe that others are being wasteful):

The mismatch between reality and voters’ perceptions is most acute when voters consider their own health care:
■ 65% of voters think that most or nearly all of the health care they receive is backed up by scientific evidence, with 26% thinking that half or less is backed up by science;
■ However, confidence diminishes when voters are asked about the health care that “most people” receive. Only a slim majority, 51%, believes that nearly all or most care is backed up by good science.

So, Americans believe their OWN health care decisions are good but every one else is being wasteful. Lastly, physicians have incentive to suggest the use of expensive technology when a less expensive one might do. From a study about prostate cancer:

We found that in the early period of IMRT [a very expensive treatment for aggressive prostate cancer] adoption (2001–03) men with high-risk disease were more likely to receive IMRT, whereas after IMRT’s initial dissemination (2004–07) men with low-risk disease [more folks but much less likely to benefit from such aggressive care] had fairly similar likelihoods of receiving IMRT as men with high-risk disease. This raises concerns about over treatment, as well as considerable health care costs, because treatment with IMRT costs $15,000–$20,000 more than other standard therapies.

So, changes in cancer detection and treatment leading to reducing “wasteful” care may not occur until the incentives change. Even to a doctor, $20,000 is a lot of money.

The US Preventive Services Task Force has for the last 20 years been making  sense out of small number probabilities and demonstrating where the value lies in for those of us caring for people who would prefer not to get cancer and  who are not yet sick. They have posted evidence on mammography for early breast cancer detection and PSA for prostate cancer detection that seem to be the opposite of the statement we all want hear about our cancer: “You are lucky, we found it just in time.”

Screening for cancer, it turns out, is an exact science when measured in aggregate but confusing on an individual level. I will try to clear up some of the confusion.

All screening discussions must include these truths:

  • The first is the fact that ultimately we all die. Dead with a cancer, whether we know about it or not, is dead.
  • The second is that some cancers will kill us or require aggressive therapy to stave off death ultimately no matter how early in the course it is detected. Living with a cancer that we otherwise wouldn’t have known about for 5 years does us no good if the treatment is the same, it just gives us 5 years longer to fret about it.
  • The third is that just because a cancer starts in a body part like the breast, doesn’t make it the same as your neighbor’s cancer with the same name. Some people with have cancer in their breasts for 20 years and die of old age but others with go from no detectable cancer to metastatic disease in 3 months.
  • The fourth is that all of our expensive testing has made it impossible to compare results today with results from 10 years ago. If we find a whole lot of non-aggressive types of cancer that start in the breast, it makes us look like we are better at treatment when all we are doing is counting cancers that wouldn’t have been counted 10 years ago.
  • The fifth is that there are behaviors (smoking, obesity) and some non-behaviors (family history) that make us prone to getting cancers, and if that is the case we ought to be watched a little more closely. Also we all ought to work on being healthier, as not getting the cancer in the first place is better than trying to beat it.
  • The sixth is that there are certain folks (older and sicker) who ought to worry about things other than having a cancer detected and we as doctors need to make them feel good about focusing on things other than early cancer detection

Upshot is that for folks OF AVERAGE RISK there is clear evidence that for certain cancers (breast, colon, cervical) at certain ages (over 50 and under 75 for breast and colon, over 21 and under 65 for cervical) early detection will make people live longer and feel better but the detection efforts don’t need to be very frequent (every other year for breast, every 3-5 years for cervical, and every 10 for colon screening with a colonoscopy). Outside of these age ranges there is some evidence for overtreatment (finding tumors when early treatment would not matter). There is also clear evidence for other cancers (ovarian, prostate) that early detection leads to overtreatment without people living longer or feeling better. Folks not of average risk include those with a strong family history (who may benefit from more intensive surveillance), folks who smoke (please quit!), and folks who are obese (exercise and weight loss are protective). In addition, if you have made it to 75, worry about something else.

I recently wrote about the US Preventive Services Task Force decision to not recommend screening asymptomatic men for prostate cancer.There is heated discussion in the lay press, blogosphere, and scientific world regarding this report. The discussants offer strong statistical evidence on one side showing no improvement in the health of America as a consequence of screening. The opposing argument goes this way:

Tom Denhart was a father, husband, grandfather, friend, artist, advocate and patient.

On April 12 2009, he lost his 14 year battle with prostate cancer.

The following is my family’s story of discovery and loss. As I’ve learned, this experience is not uncommon when it comes to men and prostate cancer. It doesn’t have to be this way.

An underlying problems is one of terminology. The New York Times ran a well written essay recently entitled “Cancer by any other name.” In it the essayists discusses the use of the term cancer in clinical medicine and everyday life.

The idea of cancer as a progressive disease that will kill if the cells are not destroyed dates to the 19th century, said Dr. Otis Brawley, chief scientific and medical officer at the American Cancer Society. A German pathologist, Rudolph Virchow, examined tissue taken at autopsy from people who had died of their cancers, looking at the cells under a light microscope and drawing pictures of what he saw.

Virchow was a spectacular artist, and he ended up being the first to describe a variety of cancers — leukemia, breast cancer, colon cancer, lung cancer.

Of course, his patients were dead. So when he noted that aberrant-looking cells will kill, it made sense. The deranged cells were cancers, and cancers were fatal.

Dr Halstead, the father of the radical mastectomy, further developed the idea that cancer needed to be radically excised to be cured, an attitude that persisted for almost 100 years:

Whereas earlier surgeons would remove the breast, axilla nodes, and pectoralis muscle, that was not enough for Halstead. He knew that cancer was a cellular disease and worried about his own role in spreading it. He argued that lifting away the excised breast with surgeon hands probably scattered tumor cells. This led him to call for a radical mastectomy—removal of the breast, axillary nodes, and both chest muscles in a single en bloc procedure. He would cut widely around the tumor, removing all the tissue in one piece.

This aggressiveness was felt to be important in the cure of cancer by those who taught me.  The essayist in the New York Times points out that such aggressiveness does not benefit patients with low grade tumors of the breast, prostate, and cervix, the kind often found by screening:

…one thing is growing increasingly clear to many researchers: The word “cancer” is out of date, and all too often it can be unnecessarily frightening.

Folks who make policy regarding cervical cancer screening through the use of the PAP smear have quietly moved in a different direction:.

Gynecologic pathologists addressed this issue with regard to cervical carcinoma in-situ in 1988 and developed the “intraepithelial neoplasia” terminology that eliminates the word “carcinoma” from these in-situ lesions.

More recently, a distinguished group of prostate cancer investigators made a similar recommendation:

Because of the very favorable prognosis of low-risk prostate cancer, strong consideration should be given to removing the anxiety-provoking term “cancer” for this condition.

These thoughts are not original. The scientist for whom prostate cancer staging is named suggested several years ago that the lowest state should be called adenosis. Keven Pho of KevinMD suggests that even with a name change, those of us opposed to aggressive approaches to not-so-aggressive tumors need to not only rely on statistics (which prove the correctness of our beliefs). In addition we need to focus on compelling stories that illustrate the consequences of calling something cancer when it isn’t. There are many such stories such as the following from the New York Times:

Brawley (a physician scientist) tells the story of a patient who had surgery and then underwent radiation, which left him with severe damage to both his rectum and ureter. “He had every side effect known to man,” Brawley says. “He had a bag for urine, a bag for stool, he was a terrible mess, in and out of the hospital with infections.” The man died six years after his surgery, from an overwhelming infection. Yet cancer statistics would list such a man as a success story, Brawley says, “because he survived past the five-year mark.”

In fairness, aggressive treatment is very effective for certain cancers. We need to work harder to distinguish patients who will benefit from aggressive treatment from those who will suffer harm without receiving any benefit. Apparently patients with low grade prostate and breast cancers fall into the latter category. How many stories do we really need for the right thing to happen?

Prostate cancer (discussed here) continues to be an in-vogue topic, as evidenced by Dr Newt Gingrich’s astute observations. The prostate, it seems, weighs heavily on the death panels as they deliberate.

As I wrote in another venue:

The USPSTF recommends against prostate-specific antigen (PSA)-based screening for prostate cancer. It does so although prostate cancer is a common cancer that 2.8 percent of men will eventually die from. The reason that screening is not recommended is that the vast majority of men who have an unsuspected cancer detected by screening have a tumor that is so slow-growing that it will not affect the man’s lifespan or result in poor health – most likely he will die of another cause first.

In addition, false-positive tests – tests where the PSA is elevated but no cancer is found – are associated with a persistent worry about prostate cancer and other unfounded health fears. The USPSTF reports that men having a false-positive test are more likely to have additional testing, including biopsies, in the following year than those who have a negative test. Over a 10-year period, as many as 20 percent of men will have an abnormal result that triggers a biopsy, with very few of these men ever being diagnosed with cancer.

The USPSTF found that a number of men biopsied will suffer from fever, infection, bleeding, transient problems urinating, as well as pain. Of the men who are found to have cancer, almost all will have aggressive therapy. The evidence is that these men will not have a longer life as a consequence of their cancer treatment. The treatment is not benign. Almost 1 percent of men will die within 30 days of undergoing radical prostatectomy, and another one in 20 will have serious surgical complications. Those that survive the surgery will have more sexual problems and urination problems than those who elect to not have aggressive therapy even if they have cancer.

Or, put another way:

Imagine you are one of 100 men in a room,” he says. “Seventeen of you will be diagnosed with prostate cancer, and three are destined to die from it. But nobody knows which ones.” Now imagine there is a man wearing a white coat on the other side of the door. In his hand are 17 pills, one of which will save the life of one of the men with prostate cancer. “You’d probably want to invite him into the room to deliver the pill, wouldn’t you?” Newman says.

Statistics for the effects of P.S.A. testing are often represented this way — only in terms of possible benefit. But Newman says that to completely convey the P.S.A. screening story, you have to extend the metaphor. After handing out the pills, the man in the white coat randomly shoots one of the 17 men dead. Then he shoots 10 more in the groin, leaving them impotent or incontinent.

Heck of a death panel, isn’t it?

When I was growing up, my parents had a subscription to Reader’s Digest. If you are unfamiliar with the publication, it is put out monthly and offered (and may still offer) 31 articles which rumor had it were written to be of such length that the average American could read an article in the time he or she spent daily in the restroom. Although the beginning of my  interest in medicine is hard to pin down, it may have begun with the Reader’s Digest’s  Joe and Jane series.

The most popular series ever published, over 7,000,000 reprints were sold (imagine that, paying for an article!). The one I recall most vividly is the one about Joe’s prostate. It may be that the beginning of the article made a big impression on me:

I am one of the hot spots in Joe’s body, a design nightmare for which Nature should hang her head. Red-brown, about the size of an English walnut, I produce a variety of grief. I can disturb Joe’s sleep by requiring several trips to the bathroom each night–or kill him with uremic poisoning. If Joe lives long enough, I will become a cancer site far surpassing the lungs in importance.

Or it may have been the fear of growing old (and the risk of the examining finger) that this article instilled me with:

Most important, Joe should have a rectal examination once or twice a year. This takes only a minute during yearly physical examination and is about the only way to find prostate cancer early enough for a surgical cure. If there doctors examining finger discovers a hard, button-size nodule in my otherwise soft rubbery tissue, he considers it cancer until he has proved otherwise.

This article was initially printed in the 1970’s. At the time  man had finally made it to the moon and if you could do that then how difficult could a cure for prostate cancer be? It turns out, very difficult. The medical profession has never developed a satisfactory method of early detection and treatment for cancer of the prostate. The strategy of frequent digital rectal exams that traumatized me as a pre-teen never panned out. An enzyme (PSA) was discovered to be higher in some with prostate cancer than in those without prostate cancer and for the past two decades optimism reigned in the “we’re gonna beat this cancer” camp to contrast with the pessimism of the “screening leads to unnecessary tests that don’t help people to live longer” camp. Interspersed were celebrity testimonials from people who were not dead of prostate cancer such as Bob Dole and Robert Goulet.

Prostate cancer screening was once again in the news this week. The US Preventive Services Task Force has changed their recommendation from an I (insufficient information to recommend for or against screening in an asymptomatic population) to a D recommendation (screening not recommended because the patient will more likely be harmed that helped by screening). The task force took two years to issue the recommendation because, in the words of the leader:

“I looked at this and said, ‘I know [controversy] is going to happen with prostate cancer for all the same reasons [as breast cancer], and we absolutely have to have the science right,’ ” he said. As for the resulting delay, Dr. LeFevre said, “I will take full blame and full credit.”

Urologists feel very strongly that they are in the right:

“All of us take extraordinary issue with both the methodology and conclusion of that report,” said Dr. Deepak Kapoor, chairman and chief executive of Integrated Medical Professionals, a group that includes the nation’s largest urology practice. “We will not allow patients to die, which is what will happen if this recommendation is accepted.”

Ultimately,we need to away move from a very expensive  but not very effective health care system.I suspect prostate cancer screening is one of the expenses we will need to do without as perhaps other types of cancer screening as well (as written about here). The USPSTF is an amazing resource that will allow for an impartial review of the data with a recommendation based on fact and not emotion. Unfortunately, when it comes to the prostate, emotion seems to rule.

A year ago, the U.S. Preventive Services Task Force issued what they thought would be a relatively uncontroversial analysis of the evidence and recommended strongly that women get mammograms on a biannual basis between the ages of 50 and 74 which I discussed here.   The recommendation of delaying the start of mammograms by 10 years led to much debate among patients, advocacy groups, and physicians.  Unfortunately, it also resulted in confusion among patients.

The reason for the change is that we know that women who are at very high risk for breast cancer (more than one first degree relative such as a mother or a sister who had early breast cancer) should consider  being tested for the breast  cancer gene (BRCA-1 and BRCA-2) and should have very frequent, early testing for breast cancer directed by a specialist. We also know that women at average risk (no close relatives with breast cancer) do not live longer or otherwise benefit from mammograms before the age of 50. What we don’t know was when women at intermediate risk (several relatives with breast cancer) should begin getting mammograms.

Last week, a study by British researchers was published in the Lancet Oncology, titled “Mammographic surveillance in women younger than 50 years who have a family history of breast cancer.”  The study helps answer the question “when is the right time to start mammograms?”  The answer is – It depends on the patient’s family medical history.

This particular study was designed to determine if women who do not have the breast cancer gene (BRCA-1 or BRCA-2) but do have a strong family history (at least one first degree relatives such as a mother or  a sister with a very early cancer or multiple relatives such as sisters, aunts and cousins with cancer) benefit from annual mammograms starting at age 40. This study found that those women who are intermediate risk for breast cancer (strong family history  but negative for the cancer gene) and were offered mammograms were less likely to die of breast cancer than if they had not received a mammogram.

Because everyone participating in the study received screenings, there was no control group.  This makes the findings not as strong as one designed with control group, but still the results are relevant and important.

In case it’s not readily apparent, the reason not to just offer mammograms to everyone is that  women who are screened when it is not needed are placed at risk of unnecessary surgery and increased anxiety. If a patient would receive no benefit from the screening, then it should not be recommended. From this study we can deduce that in addition to all women over 50 benefitting from mammograms, women over 40 with a strong family history are better off if they get a mammogram  as well.

Based on this study, a woman younger than 50 should know her family medical history and be willing to discuss it with her primary care physician. Based on this study there are some women that clearly benefit from being enrolled in a screening program before the age of 50. If she has one or more close relatives who are  afflicted with breast cancer she should  discuss early screening with her physician.

The holiday season is a great time to talk with family members about health and learn more about one’s family history. A great tool to use for this is found here. After using this tool to determine a complete family history, the  primary care physician can help to ascertain risk status and lay out a plan for early detection and treatment or prevention of diseases. By using this tool a person could find a type of medical screening such as a mammogram that might be of benefit or maybe they’ll just find out interesting information about their family.