We need to talk about Metastatic Breast Cancer.
Last week I shared some reflections on those in our community who seek to minimize the amount of time and energy that cancer continues to play in their day to day lives.
This week we need to focus on those who don't have that option.
If there is a silent majority in breast cancer land, there is also a VOCAL MINORITY who are screaming for help.
Metastatic breast cancer is a reality in our world that many of us hope we never have to face but that doesn't mean it can be ignored.
I want to respect and acknowledge that if for your own mental health you need to skip this email you do not need my permission to hit delete and say “see you next week, Amy!”
HOWEVER… I also want to offer that awareness doesn't just end with early detection and supporting those in our community who may never be “cancer free” is a critical aspect of ensuring we all can have real hope for the future.
While I myself am not living with metastatic breast cancer I am going to do my best to approach this topic with honesty, humility, respect, and love.
Should I stumble or misstep I invite you to please reach out and let me know so that I too can continue learning and growing in how I show up for those living with stage 4.
It's time to talk about Metastatic Breast Cancer Awareness.
While we all have the right to live our experience however we want there are those who need us to speak up, for them, for all of us.
What is Metastatic Breast Cancer (MBC)?
Metastatic breast cancer, also known as MBC or stage four (4), is when the cancer has spread beyond the breast itself into other areas of the body.
It is most common to find metastases, or mets, in the liver, lungs, bones, and brain.
It's well known that cancer can travel through the lymphatic system but how and why cancer spreads is a complex process that still isn't fully understood.
What we do know is that despite tremendous advances in breast cancer detection and treatment there is still no cure for stage IV breast cancer.
And this is why it matters to everyone who has ever had a breast cancer diagnosis.
Cancer is extremely complex but what is simple is the fact that we need more research for stage IV.
The difficult truths about MBC.
The hardest thing about a metastatic breast cancer diagnosis is knowing that there is currently no known cure.
While “early stage” breast cancers (0-3), stage 4, are treated with a curative intent, MBC is treated as a chronic condition and most people diagnosed will be in some form of treatment for the rest of their lives.
The goal with MBC is to find the right medicines that will control the cancer with as few side effects as possible for as long as possible.
Eventually each med typically stops working and another treatment line is attempted until the options are exhausted.
MBC by the numbers according to Metavivor.org and the CDC:
In the United States, someone dies from breast cancer every 14 minutes (around 42,000 women and 500 men annually)
This number has decreased little in the last 40 years despite the efforts to raise awareness and funds for breast cancer research.
Only an estimated 2-5% of money raised for breast cancer research is spent on studies of metastasis - most goes to prevention and early detection.
Of the 200K new breast cancer diagnoses every year, 6-10% will be stage 4 at the time of diagnosis (called do novo).
Of these early stage diagnoses (stage 0-3), 30% will progress to stage 4 at some point in their lifetime.
Black women have a higher rate of death from breast cancer than all others.
Survival rates are a fraction of early stage cancers averaging about 3 years.
These are truly scary statistics AND they are the very reason it is so important that we acknowledge these truths so that we can work to change them.
Stage 4 needs more… awareness, research, support, hope.
Out of the 1 in 8 women diagnosed with breast cancer, 1 in 3 of those diagnosed “early” will face a metastatic recurrence in their lifetime with little understanding as to why.
People living with MBC need us all to speak up.
One of the most frustrating things about “breast cancer awareness” especially during the month of October is that MBC and the people living with it are so often overlooked.
Just as research funds only represent a fraction of the focus of total breast cancer research, MBC is only highlighted on one day, October 13th, during Breast Cancer Awareness MONTH.
It's certainly important to acknowledge the “survivors” and to celebrate those who have been lucky enough to have treatment to come to an end.
But it shouldn't come at the cost of those who need the awareness most - the ones who are likely to die from this disease.
And in my honest opinion, given the statistics shared above, we all have a stake in what needs to be done when it comes to improving the lives and outcomes of those living with stage 4.
So what does it look like to live with metastatic breast cancer?
#stageivneedsmore
Life with MBC is still worthy and beautiful.
Because I have chosen to stay in cancer land I have been witness to many different breast cancer experiences, including many people with metastatic breast cancer.
Just as every early stage diagnosis is different so is every MBC diagnosis.
There are some lessons I've learned though from the people I've been fortunate to know and support during their lives with stage 4.
A stage 4 diagnosis changes everything forever.
It is a roller coaster of ups and downs, anticipation, hope, and fear.
Every person diagnosed hopes to not only live long but live well for as long as they can.
There are those who experience long periods of NEAD (no evidence of active disease) and even full remission (NED, no evidence of disease).
Your life doesn't end the day you are diagnosed and life is still worth living.
Your life can still be beautiful even if you are sick (and not all who have MBC think of themselves as “sick”)
People beat the “odds” and live for years and even decades with MBC.
The most important thing I've always seen though is that every person is still more than their diagnosis, more than cancer.
How a person navigates such a monumental life altering change is unique and you can hear more from patients themselves here.
How do those of us with an early stage diagnosis reconcile the possibility of metastatic recurrence or diagnosis?
You are still beautiful and worthy and so is your life, no matter your state of health.
How I approach my own relationship with MBC.
If I'm honest, of course I have a fear of being diagnosed with metastatic breast cancer.
But for me it is important to not hide from this fear but to acknowledge and honor it.
I have lost friends and clients to this disease.
I see the faces and names of those who've died on social media constantly.
I witness the challenges of those I know who are living with it and how it affects every aspect of their lives.
It makes me angry, sad, scared, but it also keeps me grounded in my truth and values.
For me, I see every person diagnosed with metastatic breast cancer as myself.
In my head, with every new diagnosis, with every death, I think to myself “she is all of us”.
There is no difference between me and “them” because one day it could be me.
I refuse to alienate or ignore real people out of my own fear of their disease.
I refuse to make someone else's LIFE my greatest fear.
By showing up for every person who is already living with this disease I am in a way showing up for my potential self.
While I hope I will never have to actually experience a metastatic diagnosis I hope that if I do there will be those screaming along beside me for awareness and change.
Living my life with wonder and joy at Zoomagination this summer.
How to be an advocate for those with MBC.
I am always happy to support my clients living with stage 4 through hands-on work or virtual consultations, but today I want to spotlight some organizations and resources that are at the forefront of both research and support within the MBC community.
We are lucky that despite the gaps in public awareness there are many new resources coming online thanks often to those who are actually living with MBC.
Here are some that I love and come highly recommended from within the community.
Research, Fundraising, and Support:
Lifestyle and Community:
Our MBC Life podcast
Cancer for Breakfast podcast
Think Outside (the boob) recovery program
Wildfire Magazine (dedicates an issue every year to MBC stories)
Public Policy:
The Metastatic Breast Cancer Access to Care Act (bill currently in Congress)
This bill eliminates the 5-month waiting period for SSDI benefits and the subsequent 24-month waiting period for Medicare coverage for individuals with metastatic breast cancer. Under current law, individuals generally must wait 5 months after the onset of disability to begin receiving SSDI benefits and an additional 24 months to become eligible for Medicare. Click on the link and contact your representative to ask for the passage of this bill!
I encourage you, if you are able, to focus your time, money, and energy on breast cancer awareness of stage IV, for them, for all of us.
If you are living with metastatic breast cancer, please know that I see you, I love you, and I am here for you.
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