OVERCOMING ISOLATION & EXPOSING MISCONCEPTIONS
By Lilla Romeo
The following is Lilla’s speech at the Bridging Gaps & Expanding Outreach Meeting , September 19, in NYC.
If I asked each one of you to hold up a glass of water, I don’t think you
would have any problem. But if I asked you to hold it up for an hour
without putting it down, you might find that more difficult. What about for
a day, a week or a month? It would seem not only painful but nearly
impossible.
Now think how a person with metastatic breast cancer feels, living with a
RELENTLESS disease that offers NO RESPITE.
Most of us know someone who has dealt with, or is dealing with Breast
Cancer. You may have spoken with them as they’ve gone through
chemotherapy and know how unpleasant it can be. An average BC patient
sits in the chemo chair 12 times.
I have sat in that same chair over 200 times. But, believe it or not, I am one
of the lucky ones. I have been metastatic for 8 ½ years. Current statistics
tell us that most Metastatic women will not survive 8 ½ years. Cancer.gov
lists the survival statistic at 2-3 years saying that ONLY 10% will live for
10 years.
185,000 women will be diagnosed with Breast Cancer this year. What many
people don’t realize is that Breast Cancer does not kill women, or men for
that matter. What kills is Metastatic Breast Cancer and statistics tell us that
Metastatic Breast Cancer will take the lives of 40,000 women and 400 men
this year alone.
For all our best intentions, we are afraid to really know about Metastatic
Breast Cancer. We like to think that it only happens in rare cases and that
it’s not going to happen to us, our friends or anyone in our family.
In fact, 25-30% of all Invasive Breast Cancers become Metastatic. I say this
not to frighten you, but to underscore the importance of research in the
area. According to Dr. Gradisher at Northwestern University, Chicago,
there are 155,000 women currently living with Metastatic Breast Cancer. By
2011 the number is projected to be 162,000. Doesn’t this sound like a big
enough number for all of us to PAY ATTENTION? Do these statistics
sound like ‘RARE CASES’?
The traditional Breast Cancer community focuses on the Cure. Believe me,
WE are all for the cure but our immediate concern is research that will
EXTEND lives. Thanks to new targeted treatments, men and women with
Metatatic Breast Cancer are living longer. Many of us are able to lead full
and productive lives, but too many are NOT and are dying when they are far
TOO YOUNG.
We need the entire Breast Cancer community to join with us to push for
LIFE EXTENDING TREATMENTS. And yet, Metastasis is a
frightening word. It’s even difficult to say. What’s easy, is seeking comfort
in avoidance - “if I don’t see it, talk about it or hear it”, then it won’t exist.
But it DOES exist and we need everyone’s help to find a way to live with it.
It’s the elephant in the room that leads to the feeling of isolation that so
many of our Metastatic women and men experience. Why else would so
many feel the need to keep their condition a secret from friends and family,
let alone employers? It is only through getting it out into the open that the
feelings of shame that so many have, can be calmed.
SHAME, why on earth should anyone with Metastatic disease feel shame?
Perhaps it starts with doctors talking about patients ‘failing a drug or a trial’
rather than the drug or the trial failing the patient. Perhaps it’s about
frequent media use of words like “terminal” to describe our disease.
Perhaps it is the incessant talk about the importance of a ‘positive attitude’
or a ‘strong immune system’. But mainly it is the SECRECY.
If you’re old enough to remember what things were like in the 60s and 70s
with regard to Cancer, you’ll have a good idea of what I’m talking about.
Back then, it was called the C word and whispered, out of earshot of
children or the person dealing with it. No one ever asked the patient how
they were doing, no one wanted to know the truth. That is where we are
today, 40 years later, with Metastatic Disease.
MBCN (The Metastatic Breast Cancer Network) is made up of women and
men living with Stage IV disease. We have about 900 active members in
our database but we remain a small organization. And yet, we have held
impressive National and Local conferences, dealing STRICTLY with
Metastatic disease. So far we have had conferences at Sloan Kettering,
NYU and MD Anderson.
Our mission is to bring together doctors and researchers to inform those of
us living with Stage IV disease, what is going on in the world of Metastatic
Breast Cancer. Which treatments are presently available and what is in the
pipeline. The premise being that EDUCATION is our greatest tool.
When the attendees gathered at the first conference, the chemistry was
undeniable. People were comparing treatments, talking about side effects
and offering each other tips on dealing with these side effects. It was the
first time many were able to openly discuss their treatments, the first time
many realized they were NOT alone in their struggle. The feeling of
isolation was temporarily abated.
Over the years, many of my concerned friends have asked “So, when will
you be finished with your treatment”? or say “I’ve never known anyone on
chemo so long, you look fine, are you sure you still need it”?
Our conferences have been a place where the heart can sing just looking out
at an audience of people who understand that treatment only ends when it
stops working.
Unfortunately conferences only reach a small proportion of the metastatic
community. To help broaden our reach, we are working with SHARE of
New York City to train more metastatic women to take hotline calls, offering
comfort and understanding to those who’ve received a metastatic diagnosis.
So, how do we talk about Metastatic Disease? Words have a particularly
profound effect on attitudes.
Let me illustrate. A friend told me that she was asked to be part of an
advisory questionnaire for a major BC organization. One of the questions
posed was “Are you still in treatment or are you a survivor?”
The world often uses the term ‘survivor’ as a label for someone who has
‘had cancer and beat it’. Like a compliment, it gives the impression that
there has been a battle and the warrior has emerged victorious. It gives the
appropriate closure to a very unpleasant experience and the promise of
getting one’s life back. It’s a badge of honor.
But what about those whose battle NEVER ends? How should we talk about
‘survivorship’ in that setting? What about those of us who can never put
down that glass of water? those who have no respite from treatment?
The Sicilians have a wonderful expression for describing how they face the
trials and tribulations of life. CI DIFENDIAMO, we defend ourselves.
Perhaps that expresses our situation best.
Another emotionally charged expression in this setting is Chronic Disease.
How often do we hear that Metastatic Breast Cancer has become a Chronic
Disease? How many chronic diseases do you know of with a life expectancy
of 2-3 years? BELIEVE ME, making it a Chronic Disease would give our
community INCREDIBLE happiness. And yet, we are far from it.
Yes, there are the WONDERFUL cases where someone ‘Dances with Ned’.
NED being No evidence of Disease. But usually the doctor prefaces the
statement by telling the patient that NED doesn’t mean the cancer is gone, it
means it’s lying dormant. The time bomb is waiting to explode. But
WHAT we ALL wouldn’t give for a little twirl around the dance floor with
NED!!!
As October approaches and the spotlight will be on the pink ribbon crowd,
we will all be reading articles in the media and hearing breaking news on
television about how close we are to finding the cure. There’ll be the
heartfelt stories about women dealing with chemo while working and raising
children, about celebrities – actors, newscasters – who’ve had their brush
with breast cancer and moved on. There will be emotional tales of support
given by friends and family through a difficult time, maybe even a few
friends donating their hair in support.
And that’s all WONDERFUL feel good stuff, but there will be very little
said about women DYING from Metastatic Breast Cancer or even LIVING
with it.
MBCN has made it a priority to bring AWARENESS about those living
with Advanced Breast Cancer in the month of October. Last year 4 cities
declared OCTOBER 13th as Metastatic Breast Cancer Awareness Day.
This year we can already count 21 cities and 9 states that have issued the
same proclamation. It has even been recognized by the Department of
Health and Human Services. We are hoping this begins to ease some of the
isolation felt by our community while the country is AWASH in pink.
But in the end, it all comes down to supporting research that helps extend
lives.
A few weeks ago my husband and I went for a walk in Central Park. In spite
of the heat, there were THOUSANDS of men and women running for the
Cure. It struck me that The Metastatic Community isn’t so much
RUNNING for the Cure as RACING for SURVIVAL!