Considering that it kills about 40,000 people in the United States every year, remarkably little is known about metastatic breast cancer (MBC).
About 1 in 3 of the women diagnosed with early-stage breast cancer will progress to have it, or is that 1 in 5?
Estimates on how many women are currently living with MBC range from 150,000 to 250,000.
The way breast cancer statistics are collected in this country makes it hard to get accurate numbers.
Pfizer Oncology is trying to add to the body of knowledge about MBC by looking at the opinions of MBC patients, the knowledge of the general public about the disease, and how patients and their doctors communicate about it.
In 2009, they conducted a study of women with MBC and found that 38 per cent fear talking openly about their disease, and 48 per cent find that their friends and family have trouble discussing the disease with them.
Perhaps the women in the study had the same experience as some of my Stage IV friends who have been asked at breast cancer awareness events to stay quiet so as not to scare newly diagnosed patients.
Information from two new studies has been released in Breast Cancer:A Story Half Told," just in time for October 13, 2014, Metastatic Breast Cancer Awareness Day.
The first study surveyed 2,090 men and women in the United States from representative "socioeconomic, geographic, educational and ethnic backgrounds."
The majority of people said they know "little to nothing" about advanced breast cancer, defined in this study as either Stage III or IV.
Having advanced cancer or knowing someone with it did not seem to make a person more knowledgeable.
The misconceptions are even more alarming than the lack of knowledge because they affect how people treat those with Stage III and IV cancer.
Half of the people in the study believe that breast cancer progresses because the patients did not take preventative action, or follow the correct treatment once they were diagnosed.
Almost 75 per cent believe that advanced breast cancer can be cured if caught early allowing patients to live a long time.
Perhaps the emphasis on early detection and optimism about breast cancer that pervades breast cancer awareness activities has done a disservice to people with advanced disease.
Aggressive forms of breast cancer cannot be caught in the early stages.
When people believe that early detection is the key to preventing breast cancer deaths, it is easy to think a metastatic patient is at fault.
At breast cancer walks, the speakers focus on cures seldom mentioning that the median survival time for women with MBC is three years.
However, doctors rarely use the word cure for people with Stage III or IV disease.
The best patients hope for is to hear doctors say there is No Evidence of Disease.
Friends and family have trouble understanding that currently there is no cure for Stage IV.
Another major misconception the study uncovered is most people don't know that African-American and Hispanic women have a higher death rate from breast cancer than Caucasian women.
If more people understood this, appropriate resources could go to researching the biological reasons why this might be and providing health services to these populations.
The second study reported on in Breast Cancer: A Story Half Told analyzed conversations between Stage IV women and their doctors.
With their permission, researchers videotaped 22 women talking with seven oncologists and followed up with interviews with the women and the doctors separately to see what each thought had happened during the appointment.
The researchers came to three main conclusions.
Patients did not participate much.
They mainly listened to the doctor talk.
The doctors tended to use vague language or medical jargon that made it hard for patients to understand exactly how their disease was progressing or getting better.
Finally, they found that the oncologists tended to minimize the patient's disease.
The report says, "In conversations studied, metastatic disease was conveyed as a chronic, livable disease, which minimized the actual severity of metastatic breast cancer.
As a result, prognostic information was unclear, and patients were not being provided the maximum opportunity to plan accordingly."
Based on the findings from these studies, Pfizer recommends three strategies.
"Empower Patients/Caregivers to Foster Better Engagement during Physician Interactions."
Pamphlets, videos, and glossaries specific to metastatic breast cancer can give patients more information.
Where these resources already exist, they need to be given out shortly after diagnosis, and where there are gaps, new materials need to be developed.
Staff members in oncology offices need to be trained to help patients learn to speak up with their questions and concerns.
Strategy #2. "Improve Conversations Between Physicians and Patients/Caregivers."
At conferences and continuing education programs, doctors need to learn how to improve their communication skills with patients.
Tools, like patient journals brought to appointments, could help them assess what their patients understand about their illness and work together to set goals.
"Within Society as a Whole, Heighten Understanding and Knowledge of Metastatic Breast Cancer."
The authors of the report say, "An urgent need exists to educate all audiences that breast cancer is a multi-dimensional disease with distinct characteristics, patient needs and outcomes. This educational undertaking can become the foundation of a national campaign designed to demystify metastatic breast cancer and address potential patient stigma."
Existing resources can be used and more added as needed to get the word out to the general population.
These studies take a good look at perceptions and attitudes about advanced breast cancers.
The findings are alarming.
Years and years of breast cancer awareness Octobers have not done much for the metastatic community.
October 13 is Metastatic Breast Cancer Awareness Day, but much more than that needs to be done.
Educating ourselves about advanced disease can help us have better conversations around these issues and can guide where resources should go to make 40,000 deaths a year from metastatic breast cancer a bad memory from the past.
Lewis-Hall, F. and Rothenberg, M. Breast Cancer: A Story Half Told. Pfizer Oncolgy.
Retrived from http://www.pfizer.com/news/press_kits/breast_cancer_awareness_month October 12, 2014.