Survivorship: More Than Just a Word
For decades, we've measured the success of cancer treatment by statistically tracking the number of people who have been diagnosed with cancer (think of it as the denominator) and the number of people who survive their disease for some period of time (the numerator).
Though More women have become survivors of breast cancer over time, especially in the last decade or so, we need to expand our thinking a bit and consider exactly what surviving this disease means.
In the literal sense (and, yes, that's how the statisticians track this information--you are either dead or alive), what the survival stats don't tell us is how well women are living after a diagnosis of breast cancer.
My point? That surviving the disease is no longer enough. We must start looking at how enjoyable and rewarding that survival time is.
All told, I get more Than 200 emails a day from women with breast cancer, or from family members on their behalf, or from the handful of men who have been diagnosed or are fearful they are about to be. About a quarter of these emails and postings to the Hopkins website, however, happen to be from people whose acute stage of treatment (surgery, chemo, and radiation) is over and done with. The emails of these women who are done with treatment usually don't focus on the diagnosis of their disease or even on treatment; they want to know how and when they are going to start living well again, emotionally and physically.
Women who are still in the throes of the acute stage of this disease are usually so focused on getting rid of it (and who wouldn't be? so was I) that they don't have the time or energy to start thinking about the long-term side effects that might keep lingering on long after treatment is over.
But even once the acute phase of their treatment is completed, about 70 percent of these patients (those who are hormone-receptor positive) will probably still have to take hormonal therapy for another 5 years, longer than the acute treatment itself took. And this long-term hormonal therapy carries a whole new set of side effects that can really blight the quality of life.
And then there are the emotional side effects of having breast cancer and its treatments. Though oftentimes we think of a side effects as being a strictly physical phenomenon (hot flashes, neuropathies, problems with cognitive functioning), an emotional cost awaits survivors as well, which can be quite unrelated to the treatment or the stage of the disease. By this I mean the blows to her self image that the disease delivers, the ways she might now see the world differently, and the challenge of finding her "new normal."
Such emotional side effects, to one degree or another, will upset the sense of psychological wellbeing of virtually every person diagnosed with breast cancer. And yet these non-physical feelings can be hard to quantify and even harder for some family members (like spouses) to grasp. A husband, for example, might be ready to celebrate the long-awaited conclusion of his wife's treatment ordeal--but all she can do is cry and tell him she doesn't feel like celebrating. (She might Just be completely exhausted, or she might fear that celebrating will somehow jinx her and make the disease recur.)
This dread of a recurrence, by the way, either a local recurrence at the original site or a distant recurrence someplace else, is one of the most terrifying parts of breast cancer's emotional fallout. (In the minds of many breast-cancer survivors, a distant recurrence amounts to a virtual death sentence.)
Faced with this array of physical and emotional side effects, breast-cancer survivors are starting to speak up, and they're asking just how wonderful their lives are going to be after breast cancer. As a result, oncology specialists are listening and are calling for more research that's focused on the long-term side effects that so many survivors are suffering through. And researchers today are no longer satisfied to just continue devising better ways to teach patients how to cope, but are starting to look for ways to reduce and even reverse the suffering.
How can we support the women who are coming along behind us? What can we do to help encourage research in this arena? First, talk with your doctors about the quality-of-life issues you and so many other breast-cancer survivors face. Consider joining an advocacy organization, too, and bringing up these concerns in that arena. Ask if they'd consider joining up with researchers to take on the breast-cancer survivor's predicament.
Begin with yourself. Did you assume that when your treatment was completed you would resume your old life and be back to normal again in no time? Which of your present problems do you attribute to your breast-cancer treatment? Did these symptoms take you by surprise or did you know that you were likely going to experience some troubles and setbacks? Of all the physical side effects you've had, which is the most troublesome? And what psychological side effect troubles you the most?
Until we start asking such questions of ourselves, the 85 percent of breast-cancer patients who do survive this disease will continue to see their quality of life decline
source http://health.yahoo.net
Though More women have become survivors of breast cancer over time, especially in the last decade or so, we need to expand our thinking a bit and consider exactly what surviving this disease means.
In the literal sense (and, yes, that's how the statisticians track this information--you are either dead or alive), what the survival stats don't tell us is how well women are living after a diagnosis of breast cancer.
My point? That surviving the disease is no longer enough. We must start looking at how enjoyable and rewarding that survival time is.
All told, I get more Than 200 emails a day from women with breast cancer, or from family members on their behalf, or from the handful of men who have been diagnosed or are fearful they are about to be. About a quarter of these emails and postings to the Hopkins website, however, happen to be from people whose acute stage of treatment (surgery, chemo, and radiation) is over and done with. The emails of these women who are done with treatment usually don't focus on the diagnosis of their disease or even on treatment; they want to know how and when they are going to start living well again, emotionally and physically.
Women who are still in the throes of the acute stage of this disease are usually so focused on getting rid of it (and who wouldn't be? so was I) that they don't have the time or energy to start thinking about the long-term side effects that might keep lingering on long after treatment is over.
But even once the acute phase of their treatment is completed, about 70 percent of these patients (those who are hormone-receptor positive) will probably still have to take hormonal therapy for another 5 years, longer than the acute treatment itself took. And this long-term hormonal therapy carries a whole new set of side effects that can really blight the quality of life.
And then there are the emotional side effects of having breast cancer and its treatments. Though oftentimes we think of a side effects as being a strictly physical phenomenon (hot flashes, neuropathies, problems with cognitive functioning), an emotional cost awaits survivors as well, which can be quite unrelated to the treatment or the stage of the disease. By this I mean the blows to her self image that the disease delivers, the ways she might now see the world differently, and the challenge of finding her "new normal."
Such emotional side effects, to one degree or another, will upset the sense of psychological wellbeing of virtually every person diagnosed with breast cancer. And yet these non-physical feelings can be hard to quantify and even harder for some family members (like spouses) to grasp. A husband, for example, might be ready to celebrate the long-awaited conclusion of his wife's treatment ordeal--but all she can do is cry and tell him she doesn't feel like celebrating. (She might Just be completely exhausted, or she might fear that celebrating will somehow jinx her and make the disease recur.)
This dread of a recurrence, by the way, either a local recurrence at the original site or a distant recurrence someplace else, is one of the most terrifying parts of breast cancer's emotional fallout. (In the minds of many breast-cancer survivors, a distant recurrence amounts to a virtual death sentence.)
Faced with this array of physical and emotional side effects, breast-cancer survivors are starting to speak up, and they're asking just how wonderful their lives are going to be after breast cancer. As a result, oncology specialists are listening and are calling for more research that's focused on the long-term side effects that so many survivors are suffering through. And researchers today are no longer satisfied to just continue devising better ways to teach patients how to cope, but are starting to look for ways to reduce and even reverse the suffering.
How can we support the women who are coming along behind us? What can we do to help encourage research in this arena? First, talk with your doctors about the quality-of-life issues you and so many other breast-cancer survivors face. Consider joining an advocacy organization, too, and bringing up these concerns in that arena. Ask if they'd consider joining up with researchers to take on the breast-cancer survivor's predicament.
Begin with yourself. Did you assume that when your treatment was completed you would resume your old life and be back to normal again in no time? Which of your present problems do you attribute to your breast-cancer treatment? Did these symptoms take you by surprise or did you know that you were likely going to experience some troubles and setbacks? Of all the physical side effects you've had, which is the most troublesome? And what psychological side effect troubles you the most?
Until we start asking such questions of ourselves, the 85 percent of breast-cancer patients who do survive this disease will continue to see their quality of life decline
source http://health.yahoo.net
