Editor’s Note: MBCN’s Lila Romeo gave the following speech at a press briefing for the Global Advocacy Working Group on September 19, 2008. Sponsored by Pfizer, this group of many
organizations from a number of countries has been working on an initiative to expand services and research for women with metastatic disease.
In 2014, Pfizer launched “A Story Half Told,” an initiative in partnership with advocates, patients and healthcare professionals that aims to elevate public understanding of metastatic breast cancer, dispel misperceptions, combat stigma and expand the breast cancer conversation to be more inclusive of metastatic breast cancer.
Here is Lila’s speech:
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!
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. —Lila Romeo
A Tribute to Lila Romeo from the CDMRP
Occasionally, people enter our lives and make a huge impact. Originally diagnosed with breast cancer in 1995, Lilla Romeo’s cancer recurred five years later, and she embarked on, as she described it, “the mets [metastatic] roller coaster ride,” moving from treatment to treatment, which ultimately included radiation for brain metastases.
Lilla did not turn inward with her progressive disease, but instead reached out to share her life experiences with a voice of urgency and authenticity, and with a grace and courage that could not fail to impress those who worked with her.
She served as an advocate on a Department of Defense (DoD) Breast Cancer Research Program (BCRP) Center of Excellence (COE) Award, studying brain metastases under the direction of Dr. Patricia Steeg. Regarding Lilla’s speech at the last annual meeting of the COE, scientist Patricia McGowan wrote: “Your talk about your experiences was moving and incredibly motivating. If I have a bad day or an experiment that fails, my thoughts turn to you and I am inspired to continue, and remember why we are all working together on this.”
Lilla worked until the end of her life trying to bring more attention to metastatic disease, through public avenues such as The Metastatic Breast Cancer Network. She reached out to others in similar situations through the MetastaticBreastCancerCommunity.org website, and on the hotline at SHARE, a self-help organization for breast and ovarian cancer, where she also participated in SHARE LEADers, an advocacy training program. She distributed educational brochures to oncology nurses around the country and, at the time of her death, was working on a Spanish language version for the COE consumer website BrainmetsBC.org.
She was very proud of testifying before the Oncologic Drugs Advisory Committee on erythropoietins, and Lilla was quoted in the New York Times. Her words had an impact at an American Association for Cancer Research workshop on brain metastases and also at a research think tank discussing clinical trials for brain metastases.
Lilla served as a consumer peer reviewer for the DoD BCRP and was honored to be chosen as an Ad hoc Reviewer for the BCRP programmatic review this past March, which she considered a highlight of her advocacy. Soon after, the National Breast Cancer Coalition Annual Advocacy Training Conference in May bore witness to the intensity of her commitment. Weeks before her death, struggling with a failing voice, Lilla moderated a workshop on PARP inhibitors with a determination that moved each and every person in the room.