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Still Here… Living Longer… Often Feeling Left Out
In the not too distant past, a diagnosis of Stage IV metastatic breast cancer (MBC) was a fairly certain indicator it was time to get your affairs in order. A comprehensive review published in 2004 by the MD Anderson Cancer Center in Houston indicated that as recently as the 1970s, only 10% of women were still alive five years after a diagnosis of MBC. Today, MD Anderson researchers say that as many as 40% of women with recurrent or MBC survive at least five years. While the statistics surrounding survival have improved, in many instances the services, social interaction and safety net so many of these women not only need, but deserve, are sorely lacking.
By definition metastatic breast cancer is when cancer spreads to other parts of the body. Generally, metastatic disease is identified when patients report symptoms such as bone pain, weight loss or shortness of breath. When cancer metastasizes, it commonly spreads to the bones, lungs, liver or brain.
Translation? If Stage IV was not the original diagnosis, any woman with breast cancer hopes never to hear her cancer has metastasized. This means at least once a year (and much more frequently, at first) women who have undergone treatment feel as though the other shoe could drop any time they go in for follow-up testing.
Since it is projected that there will be approximately 162,000 women in the United States living with metastatic breast cancer in 2011 (with the added kick to the gut that nearly 40,000 die each year from metastatic disease) that potential shoe drop is significant. Women who avoid it feel relieved and somewhat guilty because they fully understand the statistics are taking their toll elsewhere. Women who are diagnosed with metastatic disease not only realize their worst fears, but are suddenly thrust into a world where they feel they have little or no control. While itâ€™s true there isnâ€™t much control in terms of the actual diagnosis, strides are being made in terms of outcome.
Dr. Eric Winer, director of the Breast Program at Bostonâ€™s Dana-Farber Cancer Institute says, â€śMore and more, both doctors and patients approach this as a chronic condition. We canâ€™t cure it, but we can manage it for many years. However, managing metastatic breast cancer as a chronic condition isnâ€™t the same as managing a disease like diabetes. Diabetes, ultimately, can shorten oneâ€™s life, but thatâ€™s over the horizon of a few decades. With breast cancer metastases, the majority of women know that this is an illness that’s ultimately going to take their life. That may not be in a year or two or three, but it certainly tends to be in less than a decade.”
One of the most important things for women with breast cancer metastases to remember, says Winer, is the exciting progress of research. “This doesn’t mean that we’ll have new treatments in six months, but a lot more may be possible in just three or four years.
“That informs much of our strategy: to keep you alive, in good shape, and functioning well, so that the approaches being worked on now may be something for you in a few years. Is that a guarantee? No. Is it possible? Absolutely.”
While women with MBC may be reluctant to discuss their disease, either to protect those they hold dear, or to prevent further alienation, itâ€™s high time to start the conversation. There is an elephant in the room given todayâ€™s psycho/social sensibilities that really needs to be addressed. We tend to thrive on happy endings, quick fixes and, quite often, shallow obsessions with health and beauty. As a society, we are so firmly entrenched in worshiping wellness; many of us are ill-prepared to deal with the reality that everything ends. Even (hold on to your hats) our lives. While we may individually sympathize/empathize with someone going through a diagnosis as profound as MBC, as a society we really donâ€™t want it to ruin our day. Itâ€™s no wonder women living with MBC report feelings of isolation in regards to the attention, support and care they receive when compared to women with earlier (and more likely curable) stage breast cancers.
As with most things that frighten us, education is the key to better understanding. Awareness initiatives that educate the public and dispel misconceptions about MBC are essential in terms of decreasing the alienation and marginalization members of the MBC community often experience.
Itâ€™s important to remember, there is no cookie cutter formula for women living with MBC, the womenâ€™s overall health, needs, wants, desires and potential outcomes are as varied as the women themselves. Since they are tending to live longer, their expectations for programs and services should be met. These women have unique characteristics and requirements specific to their disease that differ from those in the broader breast cancer community. What this means is the resources that work for women with early stage breast cancers are quite often not appropriate for them.
Attention is shifting, even if it is in frustratingly small increments. In 2008 the Metastatic Breast Cancer Advocacy Working Group met in New York City to share insights both in terms of obstacles and potential solutions for women living with MBC to find better ways of addressing their unmet needs. They determined three specific areas that warrant immediate attention and action. These were:
The 16 patient advocates attending hoped the report would be a call to action for advocacy groups, industry, healthcare professionals, government, academia, community/religious organizations, and all other relevant breast cancer stakeholders to begin implementation of several strategies that would move the MBC community forward in the three key areas most needing attention.
The BRIDGE Metastatic Breast Cancer Patient Survey (as part of an effort to better assess the unmet needs of women living with MBC) recently conducted a psychosocial oncology survey of 950 women from nine countries and discovered that women with MBC would like to see more:
There are other needs women with metastatic disease are forced to address as well. Yes, many women are living much longer, but how do they navigate the long haul? How do they cope with not knowing how long a treatment will keep the cancer at bay? These women are pioneers traversing an ever changing physical and medical landscape while attempting, if at all possible, not to simply focus on their disease, but live the life they still have. For anyone undergoing essentially constant treatment, that is no small task.
Again, the coping mechanisms are as varied as the women. Some want to continue working for as long as possible because it helps to make their life feel more normal. Others donâ€™t want to remain stuck in an office. They want to travel, garden, and play with their children or grandchildren. In a perfect world people finding themselves in this situation would get to pick and choose how to spend their remaining days. If only! Most women do not have the luxury of walking away from their real life, even if it is jeopardized. While the romantic notion of travel or spending time pursuing a bucket list has great appeal in books and movies, it may not be practical for someone trying to pay bills and undergo continuous rounds of treatment. This dilemma makes it all the more crucial for the appropriate services and support to be readily available and easy to access.
Nina Schulman, an Emmy Award-winning film editor, producer, director and co-founder of the Metastatic Breast Cancer Network died in April of 2008. She left quite a legacy, not the least of which was a speech she gave at a conference in 2007. In closing, we would like to share not only what she said, but also remind those of you reading this article to hold your hands out to your sisters, mothers, co-workers, aunts, grandmothers, nieces, cousins (anyone living with MBC) to let them know you will not ignore or forget them! No, the thought of metastatic breast cancer is not comfortable, neat and tidy â€“ there is no simple fix â€“ but if breast cancer has taught us anything, itâ€™s that we are not sissies. So being there for others to validate how important they are to all of us, even when it may stoke some of our own fears, it just the right thing to do. And it may even be the selfish thing to do since it is these women who may eventually lead us to the cures we all seek.
Ninaâ€™s take on metastatic breast cancer still resonates:
â€śAs a woman living with metastatic disease, I had felt isolated and excluded from the very groups that were set up to help women diagnosed with breast cancer. I realized that the breast cancer community had become a place for ‘survivors’, not for people living with breast cancer every day of their lives. We were not being seen or heard. No one was trying to meet our needs. No one was listening.
The 30% of breast cancer patients who become metastatic need to be heard. We need to be a proactive voice in the breast cancer community. And most important, we need to advocate for treatments to extend life as the search for the cure continues.
With the growing numbers of metastatic patients undergoing extended treatments, cancer can no longer be viewed as a disease from which one is either a ‘survivor’ or one has succumbed. These categories leave the metastatic patient isolated, feared, ignored and frequently under served by many cancer centers and breast cancer organizations. There have been advances made in the treatment of cancer which have had some impact on metastatic disease….yet, as we all know, too many of us die too young and too soon.
MBCN believes that it is up to us, all of us, metastatic and non-metastatic alike, to join together and fight for treatments to extend life for metastatic patients. Those of us on the front line in the fight for the cure need everyone’s support. Let our voices be heard.â€ť
The Young Survival Coalition provides Metslink which pairs trained volunteer contacts with other women living with metastatic disease.
After Breast Cancer Diagnosis (formerly Y-Me / Network of Strength) offers a 24/7 hotline at 800-221-2141. Their Your Shoes Breast Cancer Support Center provides service for both men and women with MBC.
SHARE’s Metastatic Breast Cancer Hotline has trained metastatic peers ranging in age from early thirties to eighty. Some have been living with metastatic disease for many years. They can answer your questions, help you figure out your options, and give you realistic hope and support. Call 866-891-2392 (in New York City call 212-382-2111).
Information and support for metastatic breast cancer patients, family members and friends can also be found at http://www.advancedbc.org
An online support group is available here http://www.metastaticbreastcancersupport.org
Online Message Boards for MBC: