On July 25th, my wife's life changed forever.
At 47, she had experienced her first mammogram about a week prior and the surgeon found a very small calcification that looked suspicious and wanted to biopsy. She had no family history and we had no reason to believe that she was in any danger. We were wrong. The doctor came back and said that she had DCIS (Ductal Carcinoma In Situ) which equated to an early form of breast cancer in her case. Along with the diagnosis came a myriad of tough choices which we had to make over a relatively short period of time. She chose a double mastectomy with reconstruction. With the double mastectomy and pathology report complete, we have been advised by her surgeon that we are as medically "clear of cancer" as we can be.
As my wife was being prepared for surgery on the morning on October 7th, the anesthesiologist mentioned that there was a high rate of breast cancer in the state of West Virginia. They did not want to speculate as to why - maybe environmental conditions? That got me thinking. I tend to think of breast cancer as a "national" disease in that it seems to affect women all over the country similarly. What if that were not the case? What if there were higher rates of breast cancer in certain regions or states? What would that mean? And why?
According to the American Cancer Society, approximately 200,000 women will be diagnosed with breast cancer each year. The Joan C. Edwards Comprehensive Cancer Center reports that "about 12 out of every 100 women born today will be diagnosed with breast cancer at some time in their lives", which makes the threat of breast cancer a significant threat for all women.
First of all, let's look at the good news about breast cancer. According to the American Cancer Society, the death rate from breast cancer has decreased by 34% since 1990. Much of this has to do with early detection, improved mammography technology including digital tomosynthesis, and raised awareness about breast cancer as a whole. Cost appears to be a problem associated with women choosing to be diagnosed in the first place. While there may be some common fears associated with mammography, chiefly pain and discomfort, the primary problem associated with women failing to receive a preliminary or regular mammogram appears to be access to health care insurance. The following chart from the American Cancer Society shows the rate of women seeking mammography based on access to health insurance and level of education:
The areas in pink show the number of women who have health insurance who are seeking mammograms, roughly 71%, leaving 29% with insurance who are not seeking a mammogram. For uninsured women, the statistics show that over 2/3 of these women are not seeking a mammogram. It is important to know that women who would like to have a mammogram and do not have health insurance can contact the National Cancer Institute for a list of government agencies with phone numbers to call to receive information or financial aid to help pay or completely pay for a mammogram.
Another interesting component to the chart from the National Cancer Society is that 75% of college-educated women are seeking mammograms while only 52% of non-college educated women are. There could be a correlation between college attainment and access to health insurance which would help to explain this disparity, as well as greater awareness of health risks, regular access to medical care, and genetic factors. According to a 2007 study by the National Center for Biotechnology Information, there was a strong link between level of education and risk of breast cancer. The site states that "breast cancer mortality rates were higher among women with less education than among women with more education" and that there was an increased risk for women of color over white women, "for black women [it was] 25.2 versus 18.6 per 100,000, respectively, for white women)." It is important to note that there is no cure for breast cancer and that there is no discernible data to indicate what causes breast cancer or why there is a deliberate increased risk for less-educated women or women of color. Again, it could be due to increased environmental risks, cultural and genetic factors. According to a fact sheet from the Susan G. Komen organization, "White women have the highest breast cancer incidence rate of any racial or ethnic group. Under age 45, African American women have a higher incidence of breast cancer than white women." The bad news, according to that same fact sheet, is that "African American women are more likely to die from breast cancer. Studies have found that they often have aggressive tumors with a poorer prognosis (chance for recovery)." Again, there are a variety of complicated reasons as to why African-American women might be diagnosed later, have larger tumors and "poorer prognosis", which cannot be easily identified.
We can say with a degree of certainty that there is a higher correlation of seeking treatment by college-educated and health insured women over the less educated and at health-risk population. The Affordable Care Act (2011) has adopted some guidelines to ensure that women can receive mammograms if they so choose. According to the ACA's Healthy Women guidelines, "women’s preventive health care – such as mammograms, screenings for cervical cancer, prenatal care, and other services – generally must be covered by health plans with no cost sharing". The wording for this is somewhat vague and the Health and Human Services site does not give a great deal of information about specifics as to how this should be implemented on a case by case basis. The HHS site doe give some specific data on a state-by-state basis as to the rates of Medicaid coverage and some resources for more information as needed.
This brings me back to my initial question - was the anesthesiologist right? Is there are a higher rate of breast cancer in one state over another? How about in one region over another?According to the National Cancer Institute, the following is a map of the United States which shows the rate of incidence of breast cancer by state from 2007 - 2011:
The states in dark blue (108-116 per 100,000) show the lowest instances, going into medium blue to light blue and light yellow being the average instances. Orange being the higher rate of instances and red (129-143 per 100,000) indicate the states with the highest incidents of breast cancer. (Nevada is the only state with a diagonal line pattern which indicates that there was insufficient data to add to this data set). We cannot derive anything regarding rates of health insurance coverage from this map (i.e., those who have insurance vs those who do not), but we can deduce that the states with the highest incidents of breast cancer are states with a largely white population, while the southern states with a larger Latino and African-American population are not as affected. Also, while many of the mid-western states have a largely white population, they are also more rural which might account for fewer numbers of reported incidents per the 100,000 population.
This map, also from the National Cancer Institute, shows the rate of mortality from breast cancer, (with the colors corresponding with dark blue being the least occurring and red being the most frequent occurrence). We can see from this image that there is a correlation between higher rates of mortality in states with a larger African-American population, largely in the Southeastern United States with fewer in the northeastern, Midwest, and Pacific region.
From the looks of these maps, (see above) it is apparent that West Virginia does NOT have the highest rate of breast cancer, not even close. How could the anesthesiologist get that wrong? Quite easily as it turns out. According to the National Cancer Institute, West Virginia is above the national average in occurrence for all cancers. The rate of all cancer in West Virginia is 478.6 with the national average (for all 50 states) being 459.8. Furthermore, of the 22 types of cancer listed, West Virginia was above the national average for 14 of them and equal to the national average in 2 more! There were only a couple of types of cancer that West Virginia was actually under the national average - 2 of them were breast cancers: Breast cancer in West Virginia averages at 110.5 with the national average being 122.7 and In Situ breast cancer (the type that my wife had) in West Virginia is 21.8 with the national average being 31.0.
The final word is this - breast cancer is an elusive and insidious disease. It can strike women of all ages, race and ethnicity, but white women are more likely to contract it, educated women are more likely to get screened for it, and women of color are more likely to die from it. If anything, I hope that reading this hardens you, dear reader, to the fact that we must find a cure! We must to save the women that we love and respect.