Breast Cancer Toolkit

Breast cancer is an uncontrolled growth of breast cells. Breast cancer is the second leading cause of cancer death and, excluding skin cancers, the most frequently diagnosed cancer among women in Indiana and in the United States – with an estimated 246,660 new cases diagnosed nationwide during 2016. During 2014, there were 4,653 new cases of breast cancer diagnosed in Indiana. African-American females are at increased risk for poor outcomes relating to breast cancer, in part, because they are more often diagnosed at a younger age, at a later stage of disease, and with more aggressive forms of breast cancer. Breast cancer is rare among males; however, because males are prone to ignoring warning signs, they are often diagnosed at later stages and have poorer prognoses.

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Who gets Breast Cancer Most Often?

Sex and age are the two greatest risk factors for developing breast cancer. Women have a much greater risk of developing breast cancer, and that risk increases with age.

Factors associated with increased breast cancer risk include weight gain after the age of 18, being overweight or obese, use of menopausal hormone therapy, physical inactivity, and alcohol consumption. Research also indicates that long-term, heavy smoking increases breast cancer risk, particularly among women who start smoking before their first pregnancy.

Additional risk factors include:

  • Family history – Women who have had one or more first degree relatives who have been diagnosed with breast cancer have an increased risk. According to the American Cancer Society (ACS), 5 to 10 percent of breast cancer cases are thought to be hereditary. Additionally, breast cancer risk increases if a woman has a family member who carries the breast cancer susceptibility genes (BRCA) 1 or 2. In some families withBRCA1 mutations, the lifetime risk of breast cancer is as high as 80 percent, but on average this risk seems to be in the range of 55 to 65 percent. For BRCA2 mutations the risk is lower, around 45 percent.1
  • Race – In Indiana, during 2014, the breast cancer incidence rates for African-American and white women were similar, but the mortality rate for African-American women was 28 percent higher than for whites.2
  • Reproductive factors – Women may have an increased risk if they have a long menstrual history (menstrual periods that start early and/or end later in life), have recently used oral contraceptives, have never had children, had their first child after the age of 30, or who have high natural levels of sex hormones.3
  • Certain medical findings – High breast tissue density, high bone mineral density, type 2 diabetes, certain benign breast conditions, and lobular carcinoma in situ can increase a woman’s risk of developing breast cancer. In addition, high dose radiation to the chest for cancer treatment increases risk.3

Factors associated with a decreased risk of breast cancer include breastfeeding for at least one year, regular moderate or vigorous physical activity, and maintaining a healthy body weight. Two medications – tamoxifen and raloxifene – have been approved to reduce breast cancer risk in women at high risk. Raloxifene appears to have a lower risk of certain side effects, but is only approved for use in postmenopausal women.3

Common Signs and Symptoms of Breast Cancer

Some common signs and symptoms of breast cancer include:

  • Lumps, hard knots, or thickening
  • Swelling, warmth, redness, or darkening
  • Pulling in of the nipple or other parts of the breast
  • Change in size or shape
  • Nipple discharge that starts suddenly
  • Dimpling or puckering of the skin
  • Itchy, scaly sore, or rash on the nipple
  • New pain in one spot that doesn’t go away

Early Detection

Women should have frequent conversations with their health care provider about their risks for breast cancer and how often they should be screened. The United States Preventive Services Task Force recommends a screening mammogram every two years for women aged 50 to 74, which help detect cancers before a lump can be felt. Women between the ages of 40 to 49, especially women with a family history of breast cancer, should discuss the risk and benefits of mammography with their health care provider to determine if it is right for them.

According to the 2014 Indiana Behavioral Risk Factor Surveillance System, 72.4 percent of women ages 50 to 74 had a mammogram during the past two years. The Affordable Care Act requires preventive screening services to be included in most insurance policies. Often, these services are paid in full. Individuals should check with their individual insurance providers for specific plan information. In addition, the Indiana Breast and Cervical Cancer Program (BCCP) is the Hoosier implementation of the National Breast and Cervical Cancer Early Detection Program. The BCCP provides access to breast and cervical cancer screenings, diagnostic testing and treatment for underserved and underinsured women who quality for services. For more information, and eligibility requirements, visit www.in.gov/isdh/24967.htm.

Survivorship

Due to advances in treatment and earlier screenings, more and more people are living after a cancer diagnosis. The American Cancer Society (ACS) defines a cancer survivor as any person who has been diagnosed with cancer, from the time of diagnosis through the balance of life. According to the Indiana State Cancer Registry, as of December 31, 2014, there were an estimated 300,626 cancer survivors for all cancers combined; the four highest-burden cancers in the state (breast, colorectal, lung and prostate) account for approximately 54 percent of these survivors. Survivorship, like cancer itself, is complex and can be difficult to navigate.

According to the Indiana Cancer Facts and Figures 2015 report, there are three phases of cancer survival – the time from diagnosis to the end of initial treatment, the transition from treatment to extended survival, and long-term survival. More often than not, the terms “survivor” and “survivorship” are associated with the transitional period after treatment ends; however, survivorship includes a wide range of cancer experiences and paths4, including:

  • Living cancer-free for the remainder of life;
  • Living cancer-free for many years, but experiencing one or more serious, late complications of treatment;
  • Living cancer-free for many years, but dying after a late recurrence;
  • Living cancer-free after the first cancer is treated, but developing a second cancer;
  • Living with intermittent periods of active disease requiring treatment; and
  • Living with cancer continuously without a disease-free period.

The preferred path for most cancer patients is to receive treatment and be “cured.” This is the primary goal of all cancer treatment, when possible. For many cancer patients, the initial course of treatment is successful and the cancer does not return.

Many cancer survivors must still cope with the mid- and long-term effects of treatment, as well as any psychological effects – such as fear of returning disease. It is important that cancer patients, caregivers, and survivors have the information and support needed to help minimize these effects and improve quality of life and treatment.

The overall five-year relative survival rate for female breast cancer patients has improved from 75 percent between 1975 and 1977 to 91 percent during 2004 through 2010. For the most part, this is attributed to improvements in treatment and increased use of mammography screening.

According to the ACS, the five-year relative survival rate varies depending on the cancer stage. Staging of breast cancer takes into account the number of lymph nodes involved and whether the cancer has moved to a secondary location. When breast cancer is detected early, before it is able to be felt, the five-year survival rate is 99 percent. If the cancer has spread regionally (i.e. to a nearby lymph node), that rate decreases to 85 percent. In instances where the breast cancer has spread to distant lymph nodes, or organs (also known as the distant stage), the five-year survival rate decreases to 26 percent.

During 2014, in Indiana, only 55 percent of breast cancer cases were diagnosed at the local stage, and approximately 18 percent were diagnosed in situ (the earliest stage possible for diagnosis). During this same time, 26 percent of Indiana’s breast cancer cases were diagnosed in the regional or distant stages.2

Other factors, such as tumor grade, hormone receptor status, and increased human epidermal growth factor receptor 2 (HER2) protein made by the cancer cells, can influence survival rates.

There are multiple treatment options available for breast cancer patients, including:

  • Mastectomies (the complete or partial surgical removal of one or both breasts)
  • Lumpectomies (the removal of only the cancerous area of the breast)
  • Local radiation (used to treat the tumor without affecting the rest of the body)
  • Systemic drugs, including chemotherapy, hormone therapy and targeted therapy, which can be given orally or intravenously to reach cancer cells anywhere in the body

A common side effect of breast cancer surgery and radiation therapy is lymphedema of the arm. Lymphedema is a buildup of lymph fluid in the tissue under the skin caused by the removal or damage of the lymph nodes under the arm (called the axillary lymph nodes). It can develop soon after the treatment, or even several years later. Lymphedema risk can be reduced when only the first lymph nodes to which cancer is likely spread are removed, rather than removing many lymph nodes to determine whether or not the cancer has spread. For patients with lymphedema, there are a number of effective therapies that can be used. Some evidence also suggests that upper-body exercise and physical therapy may reduce the severity and risk of developing this condition.

Other long-term local effects of surgery or radiation treatment include numbness or tightness and pulling or stretching in the chest wall, arms or shoulders. In addition, women diagnosed and treated for breast cancer at a younger age may experience impaired fertility and premature menopause, and are at increased risk of osteoporosis. Aromatase inhibitor treatment can cause muscle pain, joint stiffness and/or pain, and sometimes osteoporosis.

In 2006, the Institute of Medicine (IOM) issued a report titled From Cancer Patient to Cancer Survivor: Lost in Transition. The report recommends that every cancer patient receives an individualized survivorship care plan that includes guidelines for monitoring and maintaining their health. In response to the IOM recommendation, many groups have now developed various types of “care plans” to help improve the quality of care of survivors as they move beyond their cancer treatment.

A treatment summary is critical for cancer survivors. The summary should describe the cancer diagnosis and medical treatments that were received (or that may be needed moving forward). Not only does the treatment summary provide survivors with a record of cancer treatments, but it helps survivors talk with other health care providers who may not have been part of the cancer care team.

According to the ACS, in addition to a treatment summary, a survivorship care plan should include a description of what follow-up appointments and tests will be needed and when they will be needed, a description of preventive measures that can be taken to help stay well, a description of any possible side effects from cancer treatments and ways to manage those side effects, and a description of ways to manage physical and mental health.

There are several organizations that assist with the development of survivorship care plans, including the American Society of Clinical Oncology, Journey Forward and LIVESTRONG Care Plan. A list of additional organizations can be found on the ACS website.

Resources

Additional and online resources:

 

References

  1. American Cancer Society. What are the risk factors for breast cancers? Accessed online at http://www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-risk-factors on September 12, 2016.
  2. Indiana State Cancer Registry Statistics Report Generator. Accessed online at http://www.in.gov/isdh/24360.htm on August 7, 2016.
  3. American Cancer Society. Cancer Facts and Figures 2016. Atlanta: American Cancer Society; 2016. Accessed online at cancer.org/research/cancerfactsstatistics/cancerfactsfigures2016/index on September 21, 2015.
  4. American Cancer Society. Cancer Treatment and Survivorship Facts and Figures 2014-2015. Atlanta: American Cancer Society; 2014. Accessed online at http://www.cancer.org/acs/groups/content/@research/documents/document/acspc-042801.pdfv on October 5, 2015.