My granddaughter sat opposite me at the table at La Quinta. I failed to smoothly pull the string on a gyroscope.
“I don’t know how that happened,” I said. “Papas don’t make mistakes — well, maybe five or so a day.”
Katie popped back with, “I think you used yours up.”
I’ve decided that the practice of medicine in the United States needs a grandchild, somebody who doesn’t let us pretend to be more than we are.
On July 29, 2013, a few days before I wrote this, the Journal of The American Medical Association, published a dramatic, if not new, revelation: We’ve been misdiagnosing some tumors as cancers and we’ve overtreated them.
A committee, established by The National Cancer Institute, provided the study to JAMA. The committee’s conclusions are certain to meet opposition.
I’ll share some of the history and science related to the problem, as I experienced and perceived them. Remember what my granddaughter said, as you read further.
I think that most cancer physicians and researchers were intelligent and empathetic, but we’ve been proven wrong. The next time you, or anyone, is told that you have an early breast, prostate or certain other cancers, it’s time to talk with your physician and make a decision based on a degree of uncertainty.
Back in 1996, a JAMA article raised concern with the following quote: “(I)f a large proportion of cases of DCIS never become clinically apparent or life-threatening, it may be that many if not most women with mammographically detected DCIS will not benefit from treatment.” (DCIS stands for ductal carcinoma in situ, a cancer starting in the milk ducts that hasn’t spread beyond them. In situ means that it remains in place.)
In 2002, Swedish researchers reported on a study of 265,000 women and concluded that there was “virtually no benefit” of mammography in women under age 55.
In 2009 the Preventive Services Task Force recommended that we should reduce the number of mammograms we do. Susan Love, a well-known breast cancer expert, went further. She wrote that we should discontinue screening for women younger than 50.
How could we have been so seriously wrong? In the main, it involves the way we diagnose cancer.
Some approaches, like hair analysis and body balancing, are worthless and these aren’t part of this discussion. I’m willing to defend that position. What we know for sure is what cancer looks like under a microscope. The problem lies in our best technology.
I’ve written before about the wealth of information we learned from colon cancer. Polyps grow in a place where we can keep an eye on them through a colonoscope. Polyps may transform into cancers over time, often years. The transformation involves changes in the microscopic appearance of the cells. They break their bonds and the orderly relationship with the cells next to them. They change shape and the DNA containing part, the nuclei, begin to look different. We may begin to see the malignancy infiltrating into muscle or other tissues. Often, mitoses increase, showing evidence of very active cell division.
Decades ago, screening programs began to show tiny areas of what appeared to be early cancers. The diagnosis of carcinoma in situ became common because these darned things looked like cancers.
Put yourself in the position of an oncologist at that time. What options existed? Could a conscientious physician decide to wait to see what happened next? The answer was “no.” We had to excise those cancerous looking areas, not to wait to see how fast they grew and, presumably, killed.
We found that radiation reduced the incidence of recurrence. Even if it didn’t clearly improve the cure rates, it resulted in a higher rate of breast preservation. Chemotherapy reduced the risk of invasive cancer and death. Women were assured that they were saved by mammography and an early diagnosis.
The same kind of enthusiasm was generated for men, who were screened for PSA levels. PSA, prostatic specific antigen, goes up in many cases of prostate cancer. It also rises in the presence of other problems. It’s value in saving lives may be zero to not much and the side effects of treatment can be severe.
Support groups sprang up. They wear their beliefs in their colors and promote screening. Manufacturers made increasingly complex and expensive machines to diagnose and treat a disease that was, at times, not a cancer at all. Cancer related industries promoted the apparent illusion of success. Patients, certain that they owed their lives to the process became vocal supporters.
When the federally supported group of experts suggested that we were doing more harm than good, I heard people grouse that it was the beginning of death panels. Risks of litigation created the risk of a “failure to diagnose” law suit. If a radiologist called a suspicious area as being benign and the patient developed a cancer, he or she could reasonably anticipate a call from an attorney. There were many pressures on doctors and the system to promote overdiagnosis, in the name of caution. Sadly, overdiagnosing was also profitable.
My observations are supported by data and personal experience. My conclusions don’t reach the level of scientific certainty that I normally try to achieve. Now that recommendations may affect Medicaid reimbursement, the media is showing increased interest and the public deserves explanations.
In some ways, it is surprising that we ever questioned our belief in screening. We have decades of data, which show little, if any, improvement in survival for patients who were labeled with prostate cancer as a result of PSA testing.
The carcinoma in situ of the breast data has been harder to understand. Breast cancer death rates have decreased, but several factors are involved. Chemotherapy has improved. Hormonal treatments for menopausal symptoms have changed and, the inclusion of non-cancers in the data have made overall percentages look better.
What has become obvious is that we expected that getting rid of early cancers should have decreased the number of advanced cancers. Evidence indicates that the idea didn’t pan out. A researcher that I knew at the University of Washington wrote a convincing article on the subject. It was published in The New England Journal of Medicine on Nov. 12, 2012.
Somewhere, along the line, we have seen cells with characteristics that we called early cancers. It’s time to rethink the criteria. Until the questions are resolved, we need more open discussion and less defensiveness.
Dr. Larry Mulkerin is a retired clinical professor and oncologist who lives in Walla Walla. A former U.S. Army Green Berets medical officer with experience in the Middle East, he also is the author of “The Ayatollah’s Suitcase,” a novel available at amazon.com and other online book retailers. He can be reached at firstname.lastname@example.org.