In the end, we are dependent on the creatures we have made. Goethe
By David J. Elpern
Abstract: I believe that the current melanoma epidemic is mostly an artifact of aggressive promotion by dermatologists, dermatopathologists and oncologists. For decades the death rate from melanoma has stayed constant, while the rate of diagnosis has soared. Promoted screenings, diagnostic drift, and the dermatoscope are causing physicians to pick up indolent lesions that are unlikely to kill. These, in turn, cause unwarranted, anxiety in the public and providers. When the dermatological establishment started the war on melanoma in the 1980s it had no idea where it would lead and at present we are promoting a scary scenario that many dermatologists recognized as overstated.
Over the past forty years of dermatology practice, I have observed changes in how we think about, diagnose, and treat melanoma. My musings may be uncomfortable for some of my colleagues, but they deserve a hearing since it is the public that ultimately pays for the information we disseminate as a profession. I believe that the melanoma epidemic is largely a fiction that has been created by dermatologists; an invention that engenders substantial health anxiety and cyberchondria in some patients while the annual mortality from melanoma has not changed significantly over the two score years of my professional career.1 (Figure 1)2
Few dermatologists know and fewer remember, that in the early 1980s, the American Academy of Dermatology (AAD), assessed each member $600 to pay a Madison Avenue public relations firm to help raise the profile of dermatologists in the eyes of the American public. The campaign cost millions of dollars and the PR firm concluded that dermatologists should promote themselves as more than lowly “pimple poppers.” We were, they told us, the real skin cancer experts and we should market ourselves as such. This led the AAD to the recommend widespread skin cancer screenings. These free screening clinics have been held in concert with the AAD since1985 and the importance of early detection of non-melanoma and melanoma skin cancers was persuasively promoted as a public good by the AAD, local dermatological societies, and other organizations.3
The status of American dermatologists has clearly improved since that campaign was implemented in early 1980s, although few know of the public relations firm’s seminal role. Dermatology practices have become much busier, for some increasingly dominated by seeking cancers and precancers, not treating symptomatic skin disease. All comers are screened and escalating numbers of patients are treated for early lesions; but the evidence that lives have been saved is not there.
SEER data show that the annual death rate from melanoma since 1975 has been remarkably constant while the number of melanomas diagnosed has risen about six-fold!1,4,5 So, while the denominator of patients with melanoma has greatly increased the numerator of melanoma deaths has remained constant. Dermatologists can declare that one’s chances of survival after a diagnosis of melanoma have improved, but the number of patients dying from aggressive melanomas has not changed much in decades. (Figure 1)
Indeed, the U.S. Preventive Services Task Force (USPSTF) does not recommend mass skin cancer screening since there is little proof that these actually do anything (except perhaps add to public’s health anxiety and improve dermatologists’ bottom lines).6
The detection of earlier, indolent melanomas has been increasing greatly making it appear as it we are winning the war on this cancer; but nothing of the sort is taking place.7 The percent of people dying from melanoma is lower than in 1975, but an almost identical number of people were dying from melanoma in 2015 as in 1975.
The increase in absolute numbers of melanomas detected can, in part, be attributed to three factors, each of which contributes to worrisome over-diagnosis.
- Academy sponsored free screening clinics and regular office screenings of all dermatology patients.2 Indeed, May has been designated as National Melanoma Month not just in the U.S. but world-wide.7 All this while screenings, it has been shown, pick up lesions unlikely to kill or harm patients.8
- Diagnostic drift by pathologists who now call lesions Stage I melanoma that thirty years ago were labeled as benign lesions.9
- The almost universal use by dermatologists of the dermatoscope. (This topic has received no formal study to date)
It is likely that most of the tumors being picked up today are indolent and would not have killed anyone.7 Yet, many of these patients are aggressively worked up and treated. This too, has not been studied to my knowledge but I see evidence of overtreatment all the time in my practice. Most clinical dermatologists know this, but are reluctant to discuss it.
Raising the public’s anxiety about melanoma drives more people in to see dermatologists and the use of the dermatoscope picks up earlier and yet earlier lesions, some of which, on biopsy, will demonstrate subtle pathological changes and be called Stage I melanoma or melanoma-in-situ by gun shy dermatopathologists who are buying into diagnostic drift.8
I believe that these three factors have contributed to the rapid rise of melanoma incidence, but the value of finding such early lesions needs to be questioned. Some of these early tumors may not even be cancers but they are labeled as such. Some dermatologists pat themselves on the back for picking up early lesions, while most patients are led to believe their lives have been saved. Practitioners and patients feel good, but in reality the public has not been well served.
The looping effect, described by the philosopher Ian Hacking, explains how disease entities are created and how physicians, pharmaceutical companies, device makers, and patients work collectively to increase the numbers of affected individuals.11
‘Looping effects’ describes the ways in which feedback patterns among diagnosis, therapeutic interventions, and health behaviors influence the natural history and prognosis of diseases. Knowledge produced by our investigations and interventions changes the way we diagnose and treat people, which in turn transforms the epidemiology and clinical profile of disease itself.12
Looping redefines disease as we know it and serves to explain what has happened with melanoma in particular, and other skin cancers in general. The spinoffs can be appreciated in the proliferation of melanoma clinics, in the large number of Mohs surgeons in the United States, many of whom are removing lesions that could either be left alone, or treated more simply in a dermatologist’s office.13,14
That AAD’s PR campaign of the 1980s paid off! We are busier than ever today. Many of us now need physician extenders and scribes to keep up with the increased demand for our services; but other than generating more income and fueling the public’s fears, what have we really accomplished? So how does all of this impact on me as I sit with patients in my rural dermatology clinic? I still love my dermatoscope. It is, after all, a tool that extends the range and sensitivity of my vision. But, like all tools it is two-edged. Once I have picked up an early melanoma, then I need to sit with the patient and show her the graph from Welch’s NEJM paper2 and reassure her that her chances of survival from this lesion approach 100%. I also share (and explain) these words from that paper:
The signature for melanoma suggests the detection of cancers not destined to cause death: overdiagnosis. [This is] undesirable because it implies that more people are being told they have cancer — and more are being treated for cancer — while true cancer occurrence remains stable.2
We have to protect our patients from overly aggressive surgery and unnecessary investigations. We are not going to put the genie back in the bottle.
This is how I see melanoma from the vantage of my rural clinical practice. I recognize and appreciate the progress made in the treatment of advanced-stage melanomas. The immune checkpoint inhibitor, ipilimumab, and the BRAF inhibitor, vemurafenib, have been game-changers for the small number of patients with advanced melanoma.15 These patients should be referred to academic cancer centers. However, here to, some voices temper the enthusiasm.16 Rather, what I have focused on in this essay is not the small minority of patients with advanced disease, but the much larger group of individuals with melanoma-in-situ and Stage I melanoma that are all to commonly overdiagnosed, overtreated and unnecessarily traumatized by their melanoma diagnosis. Most of these patients were never at risk for advanced disease, yet they are often led to believe that they were.
Acknowledgement: I would like to thank H. Gilbert Welch, M.D. for his ground-breaking work on over-diagnosis and over-treatment and his invaluable suggestions on how to improve this paper.
- National Cancer Institute: Browse the SEER Cancer Statistics Review 1975-2016, Melanoma of the Skin Figure 16.1 Graphs. https://seer.cancer.gov/csr/1975_2016/browse_csr.php?sectionSEL=16&pageSEL=sect_16_zfig.01#graph (short url:) shorturl.at/cDRV4 (created 2.20.20
- Welch HG, Kramer BS, Black WC Epidemiologic Signatures in Cancer. NEJM 381, 1378-1386 2019
- Spot Skin Cancer Free Screenings – on AAD website: https://www.aad.org/public/spot-skin-cancer/programs/screenings Accessed October 6, 201
- Rebecca L Siegel, Kimberly D Miller , Ahmedin Jemal. Cancer Statistics, 2019. CA Cancer J Clin 4. 69 (1), 7-34 Jan 2019
- Gery P. Guy Jr., et. al. Vital Signs: Melanoma Incidence and Mortality Trends and Projections — United States, 1982–2030 MMWR Weekly June
- Karen J Wernli et.al. Screening for Skin Cancer in Adults: Updated Evidence Report and Systematic Review for the US Preventive Services Task Force. JAMA, 316 (4), 436-47 2016
- Swerlick RA, Chen S. The Melanoma Epidemic. Is Increased Surveillance the Solution or the Problem? Arch Dermatol. 132 (8), 881-4 1996
- Melanoma Monday? Website: https://nationaldaycalendar.com/national-melanoma-monday-first-monday-in-may/ (accessed 2/22/20)
- R. S Shuster. Malignant Melanoma: How Error Amplification by Screening Creates Spurious Disease. Br, J Dermatol 161 (5), 977-9. 2009
- Levell NJ. Et. al. Melanoma epidemic: a midsummer night’s dream?Br J Dermatol. 2009 Sep;161(3):630-4
- Hacking I. The Social Construction of What? Harvard University Press; November 15, 2000
- RR. Aronowitz R, Greene JA. Contingent Knowledge and Looping Effects — A 66-Year-Old Man with PSA-Detected Prostate Cancer and Regrets. N Engl J Med 2019; 381:1093-1096
- Patrick M Ellison, John A Zitelli , David G Brodland . Mohs Micrographic Surgery for Melanoma: A Prospective Multicenter Study. J Am Acad Dermatol, 81 (3), 767-774, 2019
- Christopher J Miller, Cerrene N Giordano, H William Higgins 2nd. Mohs Micrographic Surgery for Melanoma: As Use Increases, So Does the Need for Best Practices. JAMA Dermatol 2019;155(11):1225-1226
- Siegel RL, Miller KD, Jemal A. Cancer Statistics, 2020. CA Cancer J Clin. 70, 7-30 2020
- Wilson, MA, Schuchter, LM. Chemotherapy for Melanoma. Cancer Treatment and Research, 209–229, 2015
Looping Effect and Melanoma
Experts (academic dermatologists, dermatopathologists, dermatoascopists)
Knowledge – Scientific literature disseminated in journals, CME
AAD: Initiated Country-wide Free screenings ~ 1985 to promote dermatology