Native American Breast Cancer Survivors' Physical Conditions and Quality Of Life

Breast cancer associated morbidity issues for Native American patients have never been reported. To our knowledge, this paper is the first report of these experiences. Because this is the first of several papers on findings from the “Native American Cancer Education for Survivors” study, in-depth background information is provided about both the population and the study. Working with Native patients over the past few decades, the authors have generally encountered the message that ‘once you have cancer, you should begin to select a grave site.’ This paper documents a message of hope for Native American breast cancer survivors. According to the National Cancer Institute, approximately 63 percent of all American Indian (AI) and Alaska Native (AN) breast cancer patients are alive five years after diagnosis. This is the poorest five year relative survival of any ethnic and minority group in the US.1, 2, 3, 4, 5 In many geographic regions, no accurate survival data are available and quality of life (QOL) information specific to Native American cancer survivorship issues has not been reported,6, 7 thus the true impact of cancer in this population is unknown. The cancer burden continues to escalate among AIANs,8, 9 and importantly, Native Americans are not experiencing the decreases in cancer incidence that is occurring among other racial groups.10, 11 In November 2007, the federal government (specifically NIH, CDC, IHS) released a Report to the Nation8 that emphasized AIAN cancer incidence data. Breast cancer incidence is particularly elevated within Northern and Southern Plains tribal nations, with the highest rates in Alaska Natives. According to the 2008 Indian Health Service (IHS) mortality data (Figure 1), age-adjusted breast cancer deaths continue to be elevated for AIANs living in Alaska, the Northern Plains and the Southern Plains, in comparison to Natives living in other regions.12 Figure 1 IHS Age Adjusted Breast Cancer Mortality Rates, 1999–2003 Although age-adjusted rates are elevated among Alaska, Northern and Southern Plains AIANs, the actual number of cancer patients and the related cancer burden may be higher among those who live in the southwest and Southern Plains. According to the US Census 200038, the 48 contiguous states that are west of the Mississippi have 43% of all AIs in comparison with other regions of the US. The five states with the highest numbers of AIs are California, Oklahoma, Arizona, Texas and New Mexico, of which AZ and NM are within the Southwest and OK (Southern Plains). Of the ten most populated reservations and off-reservation trust lands, Navajo Nation (AZ, NM, UT with 175,228 AIs) is the largest and no other reservation is close to this elevated number of Native residents. Of the nine remaining largest reservations, Fort Apache, Gila River, Tohono O’odham, and San Carlos are all located in AZ/ the Southwest (respectively 11,854, 10,578, 9,794 and 9,065 AIs). In comparison, only two of the largest reservations are based in the Northern Plains: Pine Ridge and Rosebud (respectively 14,484 and 9,165 AIs living in SD/ Northern Plains). Osage (9,209 AIs living in OK) is within the ten largest reservations and is within the Southern Plains region. Many breast cancer survivors experience co-existing physical conditions, co-morbidities and side effects from treatment. However, there has not been any documentation of the prevalence of such conditions specifically within Native American breast cancer survivors. Likewise, there is a dearth of information about how co-existing conditions differ among newly diagnosed Native breast cancer (within one year), patients diagnosed one to four years ago, and those who are long-term survivors (five or more years from diagnosis). This paper provides the first descriptive summaries for such prevalence specific to Native breast survivors. NACR’s work with Native Cancer Patients leading to the Survivorship Program Native American Cancer Research (NACR) staff has worked with Native cancer survivors since the latter 1980s to help minimize the effects of cancer and cancer treatment and improve the Native patient’s quality of life (QOL). 7,13, 14, 15, 16, 17, 18, 19, 20, 21 In the 1990s, the “National Native American Cancer Survivors’ Support Network” was created and NACR initiated and continues to support gatherings specifically for Native cancer survivors. NACR also creates programs specifically designed to meet the needs of Native cancer survivors and makes cancer information available to survivors, families and healthcare providers free of charge from its website at http://NatAmCancer.org.