Laurie Becklund: ‘Treat me like a statistic and save my life.’

I am dying, literally, at my home in Hollywood, of metastatic breast cancer, the only kind of breast cancer that kills. For six years I’ve known I was going to die. I just didn’t know when.

Then, a couple of weeks before Christmas, a new, deadly diagnosis gave me a deadline. No doctor would promise me I’d make it to 2015.

Promise me, I told my friends and family, that you’ll never say that I died after “fighting a courageous battle with breast cancer.” This tired, trite line dishonors the dead and the dying by suggesting that we, the victims, are responsible for our deaths or that the fight we were in was ever fair.

Promise me you’ll never wear a pink ribbon in my name or drop a dollar into a bucket that goes to breast cancer “awareness” for “early detection for a cure,” the mantra of fund-raising juggernaut Susan G. Komen, which has propagated a distorted message about breast cancer and how to “cure” it.

I’m proof that early detection doesn’t cure cancer. I had more than 20 mammograms, and none of them caught my disease. In fact, we now have significant studies showing that routine mammogram screening, which may result in misdiagnoses, unnecessary treatment and radiation overexposure, can harm more people than it helps.

In 1996, during a self-exam, I found a peanut-sized lump in one breast that turned out to be stage one breast cancer. I had the “best,” most common, kind of breast cancer, found it early, got a lumpectomy and short dose of radiation. Five years out, my doctor told me there was little chance of recurrence and said, “Have a great life!”

You can imagine my shock when, 13 years after my initial diagnosis, I was in gridlock on the Harbor Freeway and got a call from my doctor with the results of a PET scan ordered after routine blood labs. “Maybe you should pull over,” he said.

Half an hour later, in an elementary school parking lot, I learned the scans revealed stage four breast cancer in my bones, liver, lungs and brain: a death sentence with an average life expectancy of three years.

I demanded the truth, always, from my doctors. I was a reporter who needed facts to plan whatever life I had left. I would not live in denial. But I was too scared, too private to tell anyone except my husband, my daughter and three friends. My very cells suddenly became my most intimate secrets.

Read Full Article (Excerpt of Article from a Op-Ed piece published in the LA Times by Laurie Becklund)

Comments by:
John W. Morgan, DrPH, CPH, Professor of Epidemiology, Loma Linda University School of Public Health Epidemiologist, Regions 4, 5, 7 & 10 of the Cancer Registry of Greater California (NAACCR Committee Member)

With great sadness, I read the autobiographic account of Laurie Becklund’s experience with breast cancer, including the heartbreaking conclusion. My sadness stems from the tragedy of her loss and because her story neglects to acknowledge successes in the “war on cancer” that are too numerous to list here. Since mammographic screening for breast cancer became available in the U.S. during the middle 1980s, age-adjusted risk of death for this disease has shown a steady decline. Unfortunately, this success, which has extended lives for tens of thousands of women, cannot guarantee equal benefits for all. Using population-based cancer registry data, researchers, cancer registrars and numerous other health professionals have dedicated their lives to cancer control and prevention research that has improved early detection, targeted therapies and quality of life among patients diagnosed with cancer.

During my youth, I have vivid memories of a classmate diagnosed with, what I know today was, acute lymphocytic leukemia (ALL). Like virtually all children with ALL at that time, she quickly succumbed to the ravages of the cancer. This was my first encounter with the death of a child that I knew and I recall the fear that affected every child in our school as we learned that there was no cure for ALL, the most common childhood cancer.

Thanks to discoveries made in cancer research, the story of childhood cancer has a different ending for most afflicted children today. Currently, more than 90% of children diagnosed with ALL achieve permanent remissions from their cancer, with most having normal life expectancies. Whether children afflicted with cancer, their doctors or researchers receive credit for these victories is unimportant to me. What is of supreme importance is the understanding that each victory in the war on cancer is personal and each is dependent upon research discoveries that require high quality cancer surveillance data and funding.

Today, an average of one in eight women will have a breast cancer diagnosis during her lifetime. While this number seems startling, research that improves detection of earlier stage cancer and treatment has elevated the 5-year relative survival for breast cancer to more than 89%. I do not know whether medical progress extended or improved the quality of life for Laurie Becklund, although I am consoled in the understanding that ongoing research will allow us to incrementally move closer to her hope for the cure that she so much deserved.

The opinions expressed in this article are those of the authors and may not represent the official positions of NAACCR.

The United States Preventive Services Task Force (USPSTF) has posted draft breast cancer screening recommendations for public comments (http://screeningforbreastcancer.org/) along with supporting information. The opportunity for public comment ends May 18^th. The 2015 draft recommendations are similar to the 2009 recommendations:

• The USPSTF recommends biennial screening mammography for women ages 50 to 74 years. (“B” rating meaning that USPSTF recommends the service and there is high certainty that the net benefit is moderate or there is moderate certainty that the net benefit is moderate to substantial).
• The decision to start screening mammography in women prior to age 50 years should be an individual one. Women who place a higher value on the potential benefit than the potential harms may choose to begin biennial screening between the ages of 40 and 49 years. (“C” rating meaning that USPSTF recommends selectively offering or providing this service to individual patients based on professional judgment and patient preferences. There is at least moderate certainty that the net benefit is small.)

There was insufficient evidence to make a recommendation for women age 75 and over because women in this age group were not included in randomized trials of breast cancer screening. Similarly the USPSTF found insufficient evidence on the benefits and harms of tomosythesis (3-D digital mammography) as a primary screening method as well as insufficient evidence on the use of additional imaging technologies for women with dense breasts after a negative mammogram.

Breast density based on the American College of Radiology’s Breast Imaging Reporting and Data System (BI-RADS) is a well-established risk factor for developing breast cancer; however it has not been shown to increase the risk of dying from breast cancer. Higher breast density reduces both the sensitivity and specificity of mammography, decreasing the likelihood of detecting a tumor with mammography and increasing chances of false positive results. Currently 22 states have breast cancer density reporting laws which requires facilities that perform mammograms to notify women if they have dense breasts. The USPSTF draft recommendation concludes that more evidence is needed to understand how the frequency of screening might affect important health outcomes in women with dense breasts.

As with the 2009 recommendations, the draft statement has generated considerable discussion, and much around the role of the USPSTF recommendation in relation to the Affordable Care Act which requires coverage of preventive services without cost-sharing (e.g., copayment or deductible) under new health insurance plans or policies, if they have a USPSTF grade of A or B. Currently the Affordable Care Act utilizes the 2002 recommendation on breast cancer screening of the U.S. Preventive Services Task Force rather than the 2009 recommendations to ensure access to mammography for women ages 40-49. Click here to view USPSTF A and B Recommendations.

Learn more about these Breast Cancer Screening Draft Recommendations

Comments by:
Kathy Cronin, Ph.D, Deputy Associate Director, Surveillance Research Program (NAACCR Committee Member)

After many years of study, mammography recommendations still remain controversial. In developing the recommendations, the USPSTF considered both the harms and the benefits of mammography and assessed the evidence to determine whether there would be a net benefit to women who are screened. The benefits are measured in the reduction of mortality from breast cancer and reduction in morbidity associated with earlier detection and hopefully less treatment. The harms are more difficult to measure and assess. The most serious harm is associated with the detection and treatment of tumors that may not ever have been detected without screening which leads to unnecessary treatment, often referred to as overdiagnosis. Based on our SEER data we see that women with very early disease receive surgery, many also receive adjuvant treatment, and over 30% of women with in situ disease receive mastectomies even though it is not clear what proportion of these women would have progressed to invasive disease. The most common harm is false positive screening tests which lead to additional mammograms and possibly biopsies. The uncertainty during the period of follow up causes anxiety and stress for women in addition to the added costs to women and to the health care system. Although much work has been done to quantify the degree of harms and benefits of breast cancer screening, for women between 40-49 years of age, the USPSTF draft recommendation states that the decision to be screened should be an individual one in consultation with their doctor.

The USPSTF reached out to the Cancer Intervention and Surveillance Modeling (CISNET) group for the 2009 and 2015 updates for mammography screening to help quantify the harms and benefits associated with different screening intervals and various ages to start and stop screening. Modeling uses information available through clinical trials and observational data to gain a better understanding of disease progression before diagnosis. Understanding the natural history of breast cancer provides the basis for predicting how screening could disrupt the natural progression through earlier detection and treatment. Incidence rates from cancer registries along with population screening utilization gives critical insight into the impact of screening. Modeling using this information attempts to parse out the portion of the increase in incidence that is explained by screening versus changes in risk as well as the portion of the decline in mortality that resulted from screening versus treatment advances.

Available information, including modeling that heavily relies on registry data, helps clarify the benefits and harms associated with different ages and screening schedules. For example the draft recommendation of “C “ for women ages 40-49 does not reflect a lack of evidence of benefit, but rather a tipping of the scale in the direction of harms because of a smaller number of deaths avoided with screening in this age group. Similarly, the added harms of screening every year versus every other year appear to outweigh the additional benefits. The fact that the most serious harm of overdiagnosed cases is not observable, since it is indistinguishable from a women who benefited from early diagnosis and treatment, makes decisions related to screening particularly complex. Registries are uniquely positioned to contribute to this area of research, particularly through the linkages of tumor specimens with longer term outcomes recorded in the registry system. Also, research is underway to identify markers that distinguish between aggressive and indolent disease at diagnosis, thereby avoiding overtreatment associated with early detection and maximizing the utility of cancer screening. However, until we have the capability to differentiate those tumors that will progress from those that do not, determining when and how often to screen will continue to rely heavily on a woman’s preferences and individual circumstances. The information provided in the USPSTF draft statement provides women with scientific data on the benefits and harm associated with breast cancer screening so that they can make informed decisions with their doctors.

The opinions expressed in this article are those of the authors and may not represent the official positions of NAACCR.

For the first time, Medicare will cover the costs of lung cancer screening for some beneficiaries, the Centers for Medicare and Medicaid Services (CMS) announced on February 5. The coverage applies only to screening with low-dose computed tomography (LD-CT) in beneficiaries considered to be at increased risk based on their smoking history.

“This is an important new Medicare preventive benefit since lung cancer is the third most common [nonskin] cancer and the leading cause of cancer deaths in the United States,” said Patrick Conway, M.D., CMS chief medical officer and deputy administrator for innovation and quality.

The National Coverage Decision (NCD) on lung cancer screening was largely based on the results of the NCI-sponsored National Lung Screening Trial (NLST), which found that participants screened with LD-CT had an approximately 16 percent reduced risk of dying from lung cancer compared with those screened with a standard chest x-ray.

To be eligible for Medicare screening coverage, beneficiaries have to meet criteria similar to those that were required for participation in NLST. Beneficiaries must:

• Be between the ages of 55 and 77;
• Be either a current smoker or have quit smoking within the last 15 years; and
• Have a tobacco smoking history of at least 30 pack years, which is an average of one pack a day for 30 years.

Read Full Article (Excerpt of Article from National Cancer Institute, NCI Staff)

Comments by:
Dee W. West, Ph.D, Director, Cancer Registry of Greater California (NAACCR Member, Past President)

For decades scientists have searched for a screening test to identify lung cancer at an early and, therefore, a more treatable stage. The earliest studies in the 1960’s and 70’s tested chest X-Rays and sputum cytology; these studies failed to conclusively demonstrate increased health outcomes. In the 1990’s low dose helical computed tomography (LD-CT) was introduced and early studies cautioned about its use for children and people with high risk of cancer. In the early 2000s, the United States Preventive Services Task Force (USPSTF) reviewed existing studies and determined that there was insufficient evidence to recommend for or against LD-CT – although cancer was detected somewhat earlier there was no decrease in deaths. In 2011, the results of a NCI sponsored National Lung Screening Trial (NLST) were released, which found that participants screened with LD-CT had a 16% reduced chance of dying than those screened by X-Ray. 53,454 people participated in the NLST, were randomized to LD-CT or X-Ray, and were screened once a year for an average of 6.5 years. However, there were more false positive tests and related invasive procedures in the LD-CT group. Based on these findings, and some more recent studies, the CMS determined that the benefits outweighed the risks and decided to add LD-CT as an additional preventive service, but with specific eligibility criteria – ages 55-77, no signs of cancer, tobacco history of at least 30 pack years, and current smoker or has quit within the last 15 years. These were the same criteria for inclusion in the NLST.

To be paid for these screening tests, CMS will require all radiologists or facilities to submit data to a CMS-approved registry for all LD-CT lung cancer screenings performed. The elements to be reported at this time are: facility, radiologist, patient, ordering practitioner, model of CT scanner, indication, system, smoking history, radiation dose, and date. The catchment area for registration is all 50 states, territories, and the District of Columbia. These registries are required to have a steering committee, management plan, operational plan, a defined catchment area, ability to submit data electronically, use CMS standard data dictionary, mechanism to have a list of all participating facilities, and a quality assurance plan.

These will not be cancer registries, but registries to compile data to document and evaluate LD-CT screening in this group of participants. But adding an outcome component by linking these registries to cancer registries would create important research opportunities. We have experience and technical resources to work with CMS. This idea is similar to the NCI Breast Cancer Surveillance Consortium (BCSC), founded in 1994, which included six organizations and two affiliates and a coordinating center. The (BCSC) is a resource for researchers to examine the delivery and quality of breast cancer screening in the United States, including related patient outcomes. The BCSC has included over 2.3 million women, has over 9.5 mammograms, and has published over 450 scientific papers.

So, this announcement not only confirms that a new important screening tool is available to older Americans but has the potential for research on delivery of care and outcomes for lung cancer patients. NAACCR or individual cancer registries should consider exploring the opportunities made possible by this announcement.

The opinions expressed in this article are those of the authors and may not represent the official positions of NAACCR.