The other side of the Pink Ribbon – guest blog

This is a letter written by Anne Loeser on the Inspired Metastatic Breast Cancer Advocacy group’s facebook page.  It is a letter she has sent to a local paper in Utah.
The Other Side of the Pink Ribbon
Each autumn as the leaves fall, we find ourselves in the midst of Breast Cancer Awareness Month with its races for cures, upbeat survivor stories, and bright pink T-shirts.  Slogans such as “Early Detection Saves Lives” seem to be everywhere, and corporations fly banners in support of finding the as-yet elusive cure for this disease.   Despite the relative grimness associated with breast cancer and its standard treatments, pink ribbons fly gaily while people march in well-intended efforts to make us aware, again, of the disease called breast cancer.
Do you know anyone over the age of 18 who hasn’t heard of breast cancer?  I certainly don’t.
There are certainly advantages to becoming “aware” of something to the point of vigilance, and most of the existing breast cancer information has been confined to early detection.  The inference is that early detection saves lives and that if caught early, the disease is curable.  Now for the bombshell:  this disease is not curable.  Nearly 30% of those whose breast cancer is classified as “early stage” (Stage 0, I, or II) will eventually develop metastatic disease.  A fair portion of Stage III patients will become metastatic, and 6% to 10% of all newly-diagnosed breast cancer patients have metastatic disease from the start.  So the conservative estimated percentage of patients who will ultimately die from breast cancer is an eye-opening 34% to 40%.  Metastatic disease carries a median survival of 3 years, and there has been no statistically significant improvement in the past twenty years.*  Certainly nothing to gaily wave banners about.
Given that more than 1 out of 3 persons diagnosed with breast cancer will eventually die of it, it’s time to pin awareness about metastatic disease to the October breast cancer message.
What is metastatic breast cancer, which is also referred to as Stage IV breast cancer?  It’s cancer that started in the breast and spread to other organs such as the liver, lungs, bones and brain.  Today there are about 162,000 women – and men – living with metastatic breast cancer in the U.S.  Some of them developed metastatic disease 5, 10, 15, or even 20 or more years after their initial diagnosis.  Many are relatively young people in their 20’s and 30s with growing families.  Based upon 2011 estimates, approximately 39,520 women and 450 men are expected to die from metastatic breast cancer annually.  The sad news is that this figure hasn’t changed much since 2000 despite many years of “Breast Cancer Awareness.”
In practical terms, if it took you 14 minutes to read your paper today, someone will have died from metastatic breast cancer in that timeframe.
Treatment protocols for metastatic breast cancer and non-metastatic breast cancer are fairly similar. These include chemotherapy, radiation, surgery, hormonal therapy, targeted biologic therapy, bisphosphonates, and/or other medications.  The difference is that people diagnosed with non-metastatic breast cancer are treated for a limited time in order to eradicate their disease – hopefully forever.  Conversely, people diagnosed with metastatic disease will remain on some sort of therapy for the rest of their lives, with a few possible breaks between treatments.  Their treatment is considered palliative – it is meant to control the cancer and its symptoms while providing as good a quality of life as possible, but not to eliminate the disease indefinitely.  As you might imagine, this can be devastating news to the newly diagnosed metastatic breast cancer patient.
Most metastatic breast cancer patients proceed from one treatment to the next when their disease progresses.   After they have exhausted all of the available treatments – including clinical trials – they’ve arrived at the end of their list.   This can have an absolutely demoralizing psychological impact, as it implies that there’s no hope left.  A simple but currently challenging option for these patients is to give them access to promising new but unapproved therapies.  This is referred to as “compassionate use.”  Currently, compassionate use is legal but tightly restricted based upon criteria that can be terribly difficult to meet.  Relaxing the compassionate use guidelines for metastatic breast cancer patients would enable them to undergo additional therapies that could potentially prolong their lives and well-being. Fortunately, there are new treatments on the horizon for both metastatic and non-metastatic breast cancer.  Scientists recently completed mapping the genetic mutations in breast cancer, an effort that may change the way that patients’ tumors are classified and treated.  They also found that some forms of a particularly aggressive disease referred to as Triple Negative Breast Cancer (“TNBC”) resemble ovarian cancer more than breast cancer, implying that therapies for ovarian cancer may prove more effective than breast cancer therapies for these patients.  Findings such as these are only possible through research, and research requires funding. Most people are unaware that metastatic breast cancer is woefully underfunded.  Only 3% of breast cancer funding is channeled towards metastatic disease.  If 34% to 40% of breast cancer patients develop metastatic disease, then it would only be fair to allocate an equal percentage of funding its research and treatment.  Why is this additional funding for metastatic breast cancer research and treatment so important?  Because a diagnosis of metastatic breast cancer is not an immediate death sentence.  As per Dr. Susan Love’s Research Foundation, about 22% of patients live for five years, 10% live more than 10 years, and 2% to 3% may live a normal lifespan.  The more we learn about metastatic breast cancer, the more effectively we can treat it and improve these statistics.  Furthermore, there’s the possibility of retroactivity and crossover – namely, if something works for metastatic breast cancer, it may work for early stage breast cancer and for other types of cancers that have metastasized.  Something else to consider is that many patients with metastatic disease live in pain or disability, so focusing on improving their quality of life is critical for these patients and their caretakers.
So the next time you see a pink ribbon fluttering in the wind and are motivated to make a donation, please consider requesting that a third of it be allocated to metastatic disease.  162,000 of us will thank you for it.
*As per the Metastatic  Breast Cancer Network site
Anne Loeser is a 19-year breast cancer survivor who has lived with metastatic disease since October, 2011.  She resides in Salt Lake City, UT  with her husband and parrot.

Statistics for Metastatic Breast Cancer

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

Health Communications and Health Advocacy

With deep understanding, health communicators can engage and inspire change, whether in individuals or in society as a whole.


...the proactive voice of the metastatic breast cancer community...

The Sarcastic Boob

Determined to Manage Breast Cancer with the Same Level of Sarcasm with which I Manage Everything Else

Telling Knots

About 30% of people diagnosed with breast cancer at any stage will develop distal metastasis. I am one.

The Riverford Blog

News from the farm

%d bloggers like this: