The last time I was asked about a registry was about fifteen years ago, within the context of the room where my unborn child would eventually sleep. Would it be pink or blue? All things nice, sugar and spice or frogs and snails and puppy dog tails? Lumbering around Babies ‘R’ Us, the week before the birth of my daughter, I still had not registered. I could not bring myself to make a list (the way I had only ever done for Santa Claus) of presents people might buy to celebrate the arrival of a new baby. It felt demanding. More than that, if I am truthful, it felt presumptuous, as though showering an unborn baby with gifts might tempt the fates.  Thus, to the consternation of earnest well-wishers better versed than I in baby gift registry etiquette and dear friends, near and far, who were poised to pay for gender-specific gifts that might match the nursery décor or make life with baby easier, I did not register. Delayed gratification won out – how often does that happen these days?

Over the years, I have not given much thought to registries, until one day last week, when an envelope arrived from Scottsdale Healthcare. As has become my habit with mail from the hospital, I slid it to the bottom of a pile, anticipating the obligatory pink statement, its itemized charges as confusing as the explanation of benefits that strangely never seem to apply to me. By the time I returned to it, checkbook at the ready, I was surprised to find not a bill, but a straightforward request for information from the Cancer Registry and a postage paid return envelope. There, on the top of the form, my full name was typed. Below it, an “Accession Number,” a series of digits which, after a fascinating online search, I learned, uniquely identifies my cancer and me. It is a standardized code that consists of “the year in which the patient was first seen at the reporting facility and the consecutive order in which the patient was abstracted.” Abstracted?  Again, I am indebted to Google for leading me by the hand to a 165 slide Power Point presentation prepared by the Florida Cancer Data System (FCDS) for a University of Miami Online Abstracting course. Hardly the most relaxing way to spend a Sunday afternoon, this online trek led me to FORDS, the Facility Oncology Registry Data Standards manual which provides definitions and detailed instructions for coding patient diagnosis, treatment, and outcomes. For a facility’s cancer program to be approved by the American College of Surgeons Commission on Cancer (CoC), it must fully implement FORDS. (So conditioned am I within the breast cancer culture, that when FORDS first popped up on my Google search, I assumed it had something to do with Ford’s Warriors in Pink.) Approved by the CoC, Scottsdale Healthcare, is required to “accession, abstract, and conduct follow-up activities for tumors diagnosed and/or initially treated at the abstracting facility.” Its Cancer Registry will contact my physician or me every year for news of my progress and to remind me – lest I forget – that I have cancer.

In a nutshell, the abstract is a “snapshot” of a single primary tumor at the time of initial diagnosis, and it provides a way to monitor the tumor throughout a patient’s life. Essentially, it is the story of a cancer in “five chapters”:

1. Registry information: the reporting facility.
2. Demographics: who is the patient?
3. Tumor Information: What is the anatomic site, histologic type and extent of the cancer at the time of diagnosis?
4. First course of treatment: What modalities were used to treat the patient?
5. What happens to the patient following treatment?

Source: Florida Cancer Data System 2008

In addition to the hospital-based registry, I also discovered the Arizona Cancer Registry, “a population-based surveillance system that collects, manages and analyzes information on the incidence, survival and mortality of persons having been diagnosed with cancer.” Duly fascinated by all of this, I ventured deeper to find a brief history and timeline of cancer registration:

A Timeline of Cancer Registration (Source: National Cancer Institute)

2500 B.C.

Earliest known description of “cancer”: the “Edwin Smith” and “George Ebers” papyri which describe surgery, pharmacology, and mechanical and magical treatments

400 B.C.

Hippocrates described a breast “cancer” as “karkinoma” (known now as carcinoma) during surgical removal of a tumor

1629 A.D.

Cancer is first mentioned as a cause of death in the Bills of Mortality in England

1728

London’s “General Census of Cancer” – the first known systematic collection of information on cancer is generated

1839

Implementation of death registration (what we now know as “death certification”) in the United States

1901

Earliest known population-based systematic collection of data on people with leprosy in Norway (a population-based leprosy registry)

1926

A bone sarcoma registry established by Dr. Ernest Codman at Massachusetts General Hospital, one of the earliest registries established for a specific type of cancer

The first hospital-based cancer registry at Yale-New Haven Hospital was organized in New Haven, Connecticut

1935

First population-based cancer registry in the United States established in Connecticut

1956

The American College of Surgeons requires a cancer registry as a component of an approved cancer program

1971

The U.S. National Cancer Act budgets monies to the National Cancer Institute for research, detection, and treatment of cancer

1973

The Surveillance, Epidemiology and End Results (SEER) Program of NCI establishes the first national cancer registry program

1992

U.S. Public Law 102-515 establishes the National Program of Cancer Registries (NPCR) and is administered by the US Centers for Disease Control and Prevention (CDC)

1993

Many state laws make cancer a reportable disease

In 1992, legislation made mandatory the reporting of cancer in Arizona. Arizona Revised Statute §36-133 also required Cancer Registries to conduct lifelong follow-up of cancer patients, which brings me back to the letter I received from the hospital last week. At first blush, it seems vitally important, and, if it will help us find out what causes and how to prevent all cancer, of course I want to complete the form with every detail about my surgeries and treatment. To that end, my data picture should be accurate. But how accurate can it be, when no one can tell me with any degree of certainty how long I had cancer before I detected the lump myself? My breast cancer had evaded detection by three mammograms, camouflaged by dense tissue. So what are the implications for the data within the context of early detection and survival?  Is it possible that data may be manipulated? In my view, as a layperson with breast cancer and not a statistician, the Susan G. Komen foundation has deftly used statistics, not only to place the onus on women to detect breast cancer, but also to “survive it.” By manipulating statistics to claim that “The five-year survival rate for breast cancer when caught early is 98 percent. When it’s not? 23 percent.”
Komen overstates the power of mammograms and, once again, distracts us from the horrible reality that metastatic breast cancer kills approximately 40,000 breast cancer “survivors” annually. With all the billions of dollars and mountains of data available to us, why is that statistic not changing? Perhaps the real truth behind the numbers lies somewhere in our taking a giant collective step towards accepting the premise of Sir Austin Bradford Hill, pioneer of the randomized clinical trial:

 Health statistics represent people with the tears wiped off.

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