Thank you for following this four-part series about Metastatic Breast Cancer (MBC) entitled “Hear My Voice.”  It is such a critically important topic to all of the women and men who are living with the disease.  It is also critical to the family members of those who have lost loved ones to MBC over the years.  We all know women and men who have earned their angel wings, and we are strengthened and inspired by the legacies they left behind.  Finally, it is important to our children, because we want them to inherit a breast cancer free world.  We want their world to be free of deaths from breast cancer and diagnoses of it.

Unfortunately, where we stand today is very far from that place.  There is hope, but there is also a tremendous amount of work to do.  Work starts with learning about the topic and what sorts of actions we must take.  So that’s what today’s post is dedicated to – learning some of the basic facts and statistics about metastatic breast cancer along with what actions we must take to reverse the epidemic.  Armed with information, we can and will make a difference. Let’s begin.

How many people are living with MBC in America today?

 We don’t know.  Why? Unless your MBC is a de novo metastatic diagnosis, meaning your breast cancer has already spread beyond the breast at the time of your initial diagnosis, there is no official record that you have metastatic breast cancer.  Now if this sounds crazy, that’s because it is!  Here I am, and many other women I know, living with MBC and being treated with MBC, but nowhere is there an official count of the fact that we have MBC.  When we were diagnosed with early-stage breast cancer, we went on the record, but the next time our condition is officially recorded is if we die from MBC and that is the cause of death listed. 

I’m not going to pretend to understand the reasons for this phenomenon, but at the Living Beyond Breast Cancer conference I recently attended on MBC, we learned that it’s due to a myriad of complex reasons.  What can you do about this? You can tell Congress to count us NOW by signing the Change.org petition

Do you see me?

 The SEER program of the National Cancer Institute (NCI) is one of the primary sources of information on the numbers of cases of cancer in the United States.  SEER stands for Surveillance, Epidemiology, and End Results.  Despite its prominence, it only publishes cancer incidence and survival data from about 28% of the country’s population.  My understanding is that segments of various populations are counted, and those numbers are then used to project the occurrences in the overall population. The research projects occurrence in about 25% of African-Americans, a little over 1/3 of Hispanics, half of Asians and just under half of Native American Indians and Alaska natives.  In my opinion, although SEER is designed to do the crucial work of tracking the enormous numbers of people in this country with cancer, there are still many, many of us who are unseen.  We need your support, so sign the petition TODAY!

 How many people die from MBC in America each day?

 110. 

The Komen website states that there is one death every 13 minutes from MBC.  According to the American Cancer Society (ACS), almost 40,000 people - 39,500 women and 400 men - die each year from MBC.  16% of these deaths are women under age 50, making it the number one cause of cancer death in this age group.  This statistic dispels the myth that breast cancer is a disease of older women. I was initially diagnosed at age 33, and my metastatic diagnosis occurred one week after my 42nd birthday, so I can attest that this is an alternative fact.  Around the world, about 500,000 deaths from breast cancer occur every year. 

 Can men get breast cancer too?

 Yes!  According to the American Cancer Society, during this year – 2017 – about 2470 new cases of breast cancer will be diagnosed in men, and about 460 men will die from breast cancer.  Even though breast cancer is about 100 times less common in men than women, men are still at risk.  We need to encourage the men in our lives to be aware of any changes in their breasts by doing self-exams regularly, the same way women do.   Because we do not typically associate breast cancer with men, they are usually diagnosed at a much later stage than women and therefore are less treatable.  My friend, Kirby Lewis, created this video to enlighten us about male breast cancer. 

What percentage of persons with early stage breast cancer will eventually be diagnosed with metastatic breast cancer?

 Of course, this question is hard to answer definitively because it is unpredictable. However, research seems to indicate that about 30% of patients who receive an early-stage breast cancer diagnosis will one day have their cancer metastasize (spread beyond the breast, usually to the lungs, liver, bones or brain).  The time frame could range from a few months to a few years to many years after the original diagnosis. 

What types of support organizations exist for Metavivors?

 Fortunately, there are a wealth of resources in the form of organizations, blogs, and support groups for Metavivors (people living with metastatic breast cancer).  Below is just a short list, but it is a good place to begin.  Please note that this list includes groups that are volunteer or patient-led, focused on advocacy, and non-profit.

Life Beyond Pink

Metastatic Breast Cancer Alliance

Metastatic Breast Cancer Network

Metastatic Breast Cancer Awareness, Research, and Support

Living Beyond Breast Cancer, with MBC

MBC Exchange to Unleash Power - Dying for a Cure

I hope that this post has opened your eyes and that you now have a clearer picture of some of the facts about metastatic breast cancer. Use the resources I have provided, and join the journey to create a breast cancer free world.  We are not there yet, but if we keep moving forward in faith, one day it will be a reality.

I hope this entire Hear My Voice Series has been enlightening and informative. Today, ensuring that all people in this country have access to affordable and quality health care is a right that should be guaranteed. For change to happen, we need to speak up loudly so that our voices can be heard.  I am going to do my part to so that no one with MBC feels alone.  Won’t you do yours? See you next week!

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