Friday, January 23, 2015
While I continue taking an experimental drug to keep my cancer at bay, I cannot claim to be in either a remission or a recurrence, and the word “maintenance” does not shed much light on the situation. The paucity of the language at my disposal stymies me, as does its obfuscations. I am grateful that patients , hungry for more fortifying formulations, have begun to create them.
“Language is the mother of thought, not the handmaiden of thought,” the poet W. H. Auden once said, quoting the aphorist Karl Kraus, and then he added, “Words will tell you things you never thought or felt before.” Some of the vocabulary swirling around cancer leaves me feeling what I never wanted to feel or unable to think what I need to think.
Consider, first, medical lexicons that appear to blame the people receiving care. A patient said to have “failed tamoxifen” knows the drug has failed her. Similarly, a “platinum resistant” or “refractory” patient experiences not her refractory resistance but a drug’s ineffectuality. The word “relapsed” seems to find fault with people who have fallen back into error. Preferring the term but dreading the fact of recurrence, I bristle at surgical scans said to be “clean,” for the word makes me feel that I have been or will become dirty.
In the topsy-turvy world of cancer, anything “positive” or “advancing” spells trouble. Yet a brain labeled “unremarkable” after an M.R.I. hardly conveys the good news it contains.
Cancer’s most prominent words simply sound horrible to my ear: the mal at the start of malignancy and the hiss at the end of metastasis, as well as the hard-to-pronounce cachexia (loss of body mass) and ascites (buildup of fluids), not to mention such drugs as bevacizumab (Avastin), capecitabine (Xeloda), pemetrexed (Alimta) and trastuzumab (Herceptin). Doesn’t it seem sinister (and confusing) that each has an a.k.a.?
Just as jarring is the use of fine words in grotesque settings: cancer has “seeded” itself throughout the body; nodes have been “harvested”; a tumor is “indolent.”
Euphemisms for tumors abound. I have often been told that scans showed a lesion, shadow or spots. Before a number of medical regimens, I was informed about “minimal or acceptable side effects,” only later to wonder if I should have undergone treatments that left me with sores and rashes so debilitating that I could not swallow or with bone-wearying exhaustion that made it impossible to stand up. Because hospital idioms mask brutal realities, Dr. Susan Love came up with the now ubiquitous phrase “slash, burn and poison.”
Created by patients, portmanteaus — two words combined to produce a third — capture the dread of cancer as well as efforts to cover it up. My favorite, “scanxiety,” designates fears accompanying the anticipation of a test that may show evidence of disease. “Chemoflage,” as used by the anthropologist S. Lochlann Jain, mocks the deceptive information circulated by cheery chemotherapy brochures.
After genetic testing produced a population of people aware of their heightened risk of developing cancer, the neologism “previvor” arose to describe those who have tested “positive” for a deleterious mutation. It refers to survivors of a predisposition to cancer and has largely replaced the medical category — “unaffected carriers” — that turned this group into a contaminating menace.
Certain phenomena commonly confronted by cancer patients await new words. What should we call the befuddlement that results from the conflicting opinions of specialists on the course of action urged on a patient? Or the mind-numbing misery of interminable waits in (usually beige) waiting rooms (with jigsaw puzzles)? Don’t we need a rubric for the growing population that must turn down the unpronounceable drugs because they are unaffordable?
For years I have resisted the pervasive tag “cancer survivor” because it erases or demeans patients who do not or suspect they cannot survive the disease. In its place, readers have suggested P.L.C. (Person Living with Cancer), cancer veteran, cancer gambler and, given all the hospital trips, cancer schlepper (for which I thank my friend Nancy K. Miller).
Recently, my oncologist called me “an exceptional responder.” Since most of the people in my clinical trial have suffered recurrences, Dr. Matei meant to be happy on my behalf, but the classification saddened me on theirs.
So I was delighted to encounter an essay by another friend who encourages linguistic exuberance with respect to this matter of self-definition. In an article composed nine years before her death from metastatic breast cancer, the witty queer theorist Eve Kosofsky Sedgwick recommended acronyms like BBP (Bald Barfing Person) and WAPHMO (Woman About to go Postal at H.M.O.). She then confided that she personally had alternated between PSHIFTY (Person Still Hanging In Fine Thank You) and QIBIFA (Quite Ill, But Inexplicably Fat Anyway) until she settled on “undead.”
To describe herself when she would no longer qualify to be numbered among the undead, Eve decided on “differently extant.” Like many of our cherished deceased, she remains to this day palpably and differently extant. Her words help me come to terms.
Monday, January 5, 2015
New year good time for cancer survivors to make new planBy Sheryl M. Ness, R.N.
Living With Cancer
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As the New Year arrives, it's a great time to make a new plan for the coming months with a focus on your health and happiness. As a cancer survivor, you're not alone. Nearly 12 million people are living with cancer in the United States, more than 28 million estimated in the world. Early diagnosis and novel treatments, including advancements in clinical research, continue to provide cancer survivors with long and healthy lives.
I reviewed our past year of blog discussions and found five key points to consider as you plan for the coming year ...
- Find support in other cancer survivors. This is so meaningful. Get involved with survivor programs, in person or online ... and often.
- Nutrition matters. Feed your body with nutritious, healthy foods. Even small changes can make a difference.
- Feed your soul. Connect with your inner self in a way that works best for you. This could be meditation, yoga, exercise, singing, dancing, or listening to music.
- Look into the future for long-term survivorship. Schedule an appointment with your primary care provider to map out what you need from a medical standpoint for the year and beyond.
- Address your fears and concerns. Many of the strategies above will address this; however, feeling stressed about cancer recurrence can be a big part of survivorship. Look for ways to deal with your fears. This might be formal counseling, journaling your thoughts, or talking with other cancer survivors.
My hope is that the Living with Cancer newsletter and blog will continue to add resources, support and knowledge to your lives in the coming year.
Friday, January 2, 2015
Is Cancer Risk Mostly Affected By Genes, Lifestyle, Or Just Plain Bad Luck?
Experts say the findings highlight “the importance of secondary prevention, like early detection.” (Photo: Getty Images)
While cancer can strike anyone — young or old, unhealthy and healthy — we do have some idea of what can affect risk. Genetics often play a role, for instance, as do lifestyle habits. But according to a new study from Johns Hopkins University researchers, much of cancer risk may actually be due to mere chance.
Cancer develops when stem cells of a given tissue make random mistakes, mutating unchecked after one chemical letter of DNA is incorrectly swapped for another — the equivalent of a cell “oops.” It happens without warning, like the body’s roll of the die.
For the new study, published in the journal Science, researchers wanted to see how much of overall cancer risk was due to these unpreventable random mutations, independent of other factors like heredity and lifestyle.
“There is this question that is fundamental in cancer research: How much of cancer is due to environmental factors, and how much is due to inherited factors?” Cristian Tomasetti, PhD, a biomathematician and assistant professor of oncology at the Johns Hopkins University School of Medicine and Bloomberg School of Public Health, tells Yahoo Health. “To answer that question, however, the idea came that it would be important to determine first how much of cancer was simply due to ‘replicative chance.’”
To measure this, the researchers plotted the number of stem cell divisions in 31 types of tissues over the course of a lifetime against the lifetime risk of developing cancer in the given tissue. From this chart, the scientists were able to see the correlation between number of divisions and cancer risk — and from that correlation, researchers were able to determine the incidence of cancer in a given tissue due to replicative chance.
Ultimately, researchers found that roughly two-thirds of the cancer incidence was due to this replicative chance, or simply “bad luck.” (However, it’s worth noting researchers did not examine some cancers, such as breast and prostate cancers, because of lack of reliable stem-cell turnover information.)
But don’t assume you’re simply doomed to the hand fate deals you. After additional analysis, researchers found that of the 31 cancers examined, 22 could be explained by “bad luck” — but for the other nine, there was another factor aside from simple chance that likely contributed to the cancer.
This is presumably because environmental and hereditary factors play a role in development. “There are many cancers where primary prevention has huge positive effects, such as vaccines against infectious agents, quitting smoking or other altered lifestyles,” says Tomasetti.
Incidentally, the cancers where risk could be lowered by primary preventive practices were ones you may expect — diseases like skin cancer, where limiting sun exposure can lower your risk, as well as lung cancer, where avoiding smoking is key.
Tomasetti says we can still lower our odds of developing cancer in any and all cases, though, especially as preventative research moves forward. Their analysis just indicates that, for many types of cancers, primary prevention like healthy lifestyle habits may not work as well. “This however does not imply at all that there is not much we can do to prevent those cancers,” he says. “It just highlights the importance of secondary prevention, like early detection.”
Since so much of risk is based on random cell division, identifying a mutation before replication goes unchecked throughout the body is, and will continue to be, essential. “It is still fundamental to do what we can in terms of primary prevention to avoid getting cancer, but now we understand better what causes cancer and how relevant the ‘bad luck’ component is, because we have a measure of it,” Tomasetti explains. “This work tells us that randomness plays an important role in cancer, possibly much larger than previously thought. And therefore early detection becomes even more important.”
You can also look at this new research another way, though, according to Tomasetti. “On one side, it actually strengthens the importance at the individual level to avoid risky lifestyles,” he explains. “If my parents smoked all their lives and did not get lung cancer, it is probably not because of good genes in the family, but simply because they were very lucky.
“I would be playing a very dangerous game by smoking,” Tomasetti says. See? Healthy habits do count.