NCI: 6 Easy Ways to Improve MBC Recordkeeping

As previously noted, definitive  metastatic breast cancer numbers are elusive. How many people in the U.S. currently have MBC?  Pundits cite numbers ranging from 155,000 to 160,000. But this is a number arrived at by shaking the statistical equivalent of a Magic-8 ball that responds to every query with “Reply hazy, try again” or “Ask again later.”

NCI and SEER database record only incidenceinitial treatment and mortality data. What happens in between? Your guess is as good as mine—or that of NCI and SEER.

Patients are not followed for subsequent medical outcomes. Neither the SEER cancer registries nor any other population-based cancer registry system collects information on disease recurrences. 

“There has been interest in tracking recurrence but given the degree of cost, time and effort to collect accurate incidence information, the capability to track recurrence for breast cancer and over 100 other types of cancer would require a considerable additional commitment of time and resources,” an NCI media spokesperson said. “Due to the current fiscal climate, expansion of our registry systems is unlikely. Should our fiscal situation change both nationally and at the state level — since states have the legislative authority for cancer being a reportable disease — tracking recurrence is certainly an item that could be considered.”

Let’s review each of these potential hurdles.

Objection No. 1: Tracking recurrence is too costly.

Response: Have you learned NOTHING from working in DC, Grasshopper?

If you’ve got the juice, you  can get the dough. Heck, the Department of Defense Breast Cancer Research Project is working with NBCC to the tune of $150 million.

Suggestion No. 1: Reposition “tracking recurrence” as “miscellaneous recovery expenses” thus qualifying for American Recovery and Reinvestment Act funds.

Suggestion No. 2: Call out Dr. Susan Love’s Army of Women. She’s already  got about 360,000 recruits. Tell her you want a few thousand volunteers to form the MBC National Guard. One weekend a month, the Pink Berets will compile MBC recurrence stats. Bonus: The Guard serves both state and federal governments–they’ve got the legislative authority angle covered.

Suggestion No. 3: Get in touch with Harry Connick Jr., dreamboat and star of “Living Proof.” Connick portrayed Dr. Dennis Slamon, key developer of Herceptin.  The eight-year effort was made possible by  the Revlon/UCLA Women’s Cancer Research Program. (Thank you, Ron Perelman!)  Herceptin  is now available to women with metastatic breast cancer worldwide and has significantly increased the survival rate for over one-third of women diagnosed with the most aggressive forms of cancer. Maybe Harry has Perelman’s number!

Objection No. 2: It will take too much time.

Suggestion No. 4: Call AARP! Cancer is a disease of aging. AARP has 35.7 million members–most of them are spending vast amounts of time tatting or cleaning their swimming pools. I am sure they would LOVE to help out! Bonus: If you are over 50, AARP already knows who and where you are.  All NCI needs to do is add a couple of cancer questions to AARP’s direct mail pieces.

Suggestion No. 5: Rembember that time is but a mental distension.  St. Augustine reminds us that the past has ceased to be, the future is not yet, and only the present exists, but the present moment cannot have any duration.

Objection No. 3: It will take too much effort and additional resources.

Suggestion No. 6: Get a gimmick! Whatever you do, don’t use any icky words like “metastatic” or “breast” or  “cancer.” Instead, wrap your mission in a warm and fuzzy blanket. For example, don’t say “NCI wants to do something about the unknown number of men and women in the U.S. living with MBC because 45,000 people, including wives, mothers, daughters, sisters, nieces and grandmothers will die from MBC this year.” Go with something like “NCI: Official Sponsor of Fewer Funerals.” You could then invite celebrities to record special versions of your theme song: “Stayin’ Alive.” 

NCI, you know I’m just busting your chops. Thank you for the 750 active clinical trials you’re funding for metastatic breast cancer. And it’s awesome that we  have 10 SPOREs — the Specialized Programs of Research Excellence — a cornerstone of NCI’s efforts to promote collaborative, interdisciplinary translational cancer research.

But when it comes to a comprehensive MBC database, C’mon man!

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2 thoughts on “NCI: 6 Easy Ways to Improve MBC Recordkeeping

  1. njbookwoman says:

    and there might be some overlap between the AARP folks and the Army of Women…pink abacuses would be nice. I also suggest Olivia Newton-John for the Stayin Alive video. (Maybe she could bring Travolta, too.)

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