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"SPEAKING OUT..."
In June 2008 I attended a breast cancer seminar with three friends. At the start of the meeting we were told: “Cancer is not a death sentence.” Numerous breast cancer survivors stood up to attest to the fact that they were survivors because they were “vigilant” and even if breast cancer struck again, they would survive because they had “courage” and the “will to live”. The moderator said it was wonderful that in these times everything was in the open … that breast cancer was no longer a secret and everyone could speak of it freely. She announced there were a whopping 2.5 million survivors and asked all of them to stand. Everyone applauded. My friends and I looked at each other. Well … we were definitely “vigilant”, we were certainly “courageous” and our “will to live” was absolute. But ... “no longer a secret”? … “survivors”? We shook our heads “no” -- those terms did not pertain to us. Should we stand or not? Should we speak out or not? It was clear this was going to be like so many other conferences. We listened to the speakers. We listened to the survivors. Nothing was really relevant to our situation … no speaker, no literature, no reference, no resource. Finally I raised my hand. The moderator called upon me, then halted and before I could speak announced there was no more time for questions. Someone we spoke with prior to the formal program told us they had identified our small group to the moderator. Was the sudden termination deliberate or just a coincidence? We did not know, but we were not surprised because while breast cancer in general is indeed openly discussed these days, “our” breast cancer remains secreted away and an unwelcome topic at most such events. What makes us different? Our breast cancer “metastasized”. It spread to our lungs, bones, livers, brains and other parts of our bodies. Like most of those who develop “BC mets” as we call it, we too had been vigilant. We had done our monthly self-exams, had regular mammograms and ran to the doctor with every noted change. When our initial breast cancer was diagnosed we underwent the recommended treatments. For most of us that meant surgery, chemo, radiation and a follow-on pill regimen but even so, we all developed BC mets. In fact, some of us were diagnosed with initial breast cancer and BC mets at the same time. Nationally we are perhaps 170,000 … perhaps 250,000 … statistics for BC mets are few and far between … many statistics for our disease are not even compiled. These are the only estimates I found and they are several years old. Locally we are 30 women, who have found each other over the past few years. We are very close-knit. We gather frequently for coffee, for dinner, for sightseeing and for shopping excursions. To the outside world we undoubtedly appear happy and even carefree. And indeed, most of the time we are truly an upbeat group that has a lot of fun together. But watch closely and on occasion you will see us concerned and clustered around someone in our group who is clearly distraught. That person has just learned that despite the best possible medical care, her cancer has spread … again. It will likely surprise you to learn that roughly 30% of the those diagnosed each year with breast cancer will eventually metastasize. In 2008, this equated to about 49,000 Americans. However, there is another group diagnosed annually with BC mets that is not included in this count. These are people whose breast cancer is already stage IV at the time of their initial diagnosis. If you add the two groups together, you will find that anywhere from 73,000 to 86,000 Americans are diagnosed annually with the fatal disease. Life expectancy after diagnosis? Not good. BC mets takes the lives of roughly 41,000 Americans each year, including almost 500 men. The median survival after diagnosis has hovered around 3 years for two or more decades. Over 70% lose their battle within five years ... 90% within ten years. The disease is widespread, swift acting and deadly, yet surprisingly, BC mets remains largely unknown to the public. And that takes a huge toll both in terms of support for the patient and research for the disease. Metastatic breast cancer is a topic that is completely ignored at most breast cancer survivor conferences. Most advocacy groups, fundraisers and the vast majority of “pink” organizations do not involve themselves with BC mets. It is not the positive story they like to promote. Talk of the condition would depress the mood for many at these events. Likewise, mainstream media happily covers breast cancer success stories but only rarely picks up a story on BC mets. Thus the public at large remains blissfully ignorant of the condition until if and when it strikes close to home. Largely as a result of this deliberate shifting of public focus to the positive – and away from the reality of BC mets – research for the condition receives only about 1% of the nation’s annual $5 billion cancer fund … a fact that has repeatedly prevented researchers from developing the drugs that could save our lives. Our frustration is heightened by the understanding that IF there was a dedicated and adequately funded BC mets research program, it might be possible to transition our disease from a terminal condition to a chronic illness within as few as ten years. The impact on the patient is also significant. The positive "hype" results in many, if not most, breast cancer patients believing that only the rare person dies of the disease and that it happens primarily to those who are negligent or have no access to decent medical care. The newly diagnosed patient is left with a devastating feeling of isolation and failure; and at a time when she (or he) needs it most, the patient often finds no local, non-medical support. As we carpooled home after the conference we discussed the term “survivor”. Of the four of us, two were in remission and two were battling aggressive spreads to the bone. We knew that irrespective of our current situations, it was not a question of if our breast cancer would spread again and whether we would survive, it was only a question of when and where it would surface next and how long the medications could keep us alive. No, we did not consider ourselves survivors. To us the term implied a challenge overcome and put permanently to rest. So we coined a new term -- "metavivor" -- to mean that yes, we are definitely alive and we are truly enjoying and making the best of every day; however, we live with the constant awareness that we are not expected to "survive" this disease. What happened to the four of us? One of the women who was stable passed away only four months later -- four years after her BC mets diagnosis. Of the two women with a spread to the bone, one experienced a spread to her liver and passed away suddenly in the summer of 2009 -- one and one-half years after her diagnosis. The third woman was diagnosed with a spread to her brain shortly after the conference. She is two years out from her diagnosis and is now entering Hospice care. I am the fourth. I am three years beyond my diagnosis and remain in remission. Why do I tell you this? We are not asking for sympathy and we certainly do not wish to frighten anyone, but we have several requests. We ask for your recognition of the seriousness of this disease and our desperate need for increased support, increased awareness and increased research in the field of metastatic breast cancer. We ask that the organizers of breast cancer conferences include speakers on metastatic breast cancer. We ask that they have literature available on the disease and that they receive and respond in detail to questions asked concerning our condition. We ask that in addition to applauding the 2.5 million "survivors", those valiantly battling stage IV breast cancer also be applauded. And we ask that there is a moment of silence for the millions, who have died of the disease. Further, we ask that "survivors" be sensitive when they speak at conferences and public forums and be ever cognizant of the fact that many do not survive this disease and persons struggling with stage IV breast cancer might well be in the audience. We ask that the public understand that the 110+ Americans dying every day from breast cancer are not dying because they were not vigilant or were not courageous enough, and they are not dying because their will to live wasn’t strong enough. To the contrary, it takes tremendous courage and the strongest of wills to face this diagnosis squarely, to wear a smile on your face and move forward with your life while wondering what tomorrow’s test will reveal, how your body will react to the next series of treatments and/or clinical trials ... never knowing when your oncologist will tell you he has run out of options or your body will not tolerate any more drugs, and hoping against hope that there will be a medical breakthrough before that time arrives. No … these people are not dying because they were somehow inadequate to the task, they are dying for the simple reason that the lack of research has kept this disease un-survivable. Finally, and most importantly, we ask that when donating to cancer research, people consider donating to organizations that have a posted policy to award a specific share of monies received to research aimed at eradicating the real killer … cancer that has metastasized. Perhaps if enough people do this, one day we too will be calling ourselves “survivors”. This essay was written June 2008 for National Cancer Survivors’ Day Celebrations in Annapolis MD. For more information, please contact METAvivor Research & Support Inc. is a 501(c)(3) charitable organization based in Annapolis MD. |
Written by Dian “CJ” M. Corneliussen-James | home | ║ | who we are | ║ | awareness | ║ | research | ║ | support | ║ | fundraising | ║ | store | Metavivor Research & Support Program. Copyright 2009 © All Rights Reserved. |