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DIARY: April 25, 2013 09:56 AM Thursday;
Health care breast cancer article New York Times.
........Our Feel-Good War on Breast Cancer
2...Mamogram Limited Effectiveness
3...Mamogram Testing False Negatives Missing Entirely Active Cancer
4...Early Detection Extends Survival with Quality of Life
5...Medical Mistakes Cause More Deaths than Automobiles Planes Trains
6...Cancer Deaths Not Reduced by Early Detection and Treatmnt
7...Cancer "Triple Negative" Millie's Diagnosis Most Difficult to Treat
8...Eternal Vigilence Survive Stage 4 Cancer Nearly 10 Years
9...Treating Cancer as Chronic Disease Extend Quality of Life
10...Cancer Not Death Sentence Case Management Extend Quality Life
11...Mamogram False Positives Unnecessary Treatments Life-ending Side Effects
12...Superficial Charity Walks Ribbons Misdirect Money and Effort
13...Treating Metastatic Cancer Chronic Disease Ignored
14...Money Effort Invested Prevent Cancer Wasted on Impossible Dream
15...Metastatic Cancer Requires Good Management for Effective Care Oxymoron
16...Stage V Cancer Science New Treatments Manage Medical Team Yoeman's Work
17...Treating Cancer Chronic Disease Yoeman's Work Manage Medical Team
18...Cancer Cure Not Possible We Will Not Get Out of This Alive
19...Science Fashions New Treatments But Mobilize Medical Machinery Difficult
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Cancer Chronic Disease Survival Quality Life Worth Living Yoeman's W
0903 - ..
0904 - Summary/Objective
090501 - Follow up ref SDS 18 0000, ref SDS 17 0000.
090503 - New York Times excellent article presents author's experience and
090504 - evolving perspective benefiting from early cancer detection at age 35.
090505 - Author has strongly promoted mamogram tests for young women based on
090506 - success with cancer in remission for 15 years. ref SDS 0 KT7O Within
090507 - the past year (9 months) the author suffered recurrence. ref SDS 0
090508 - M49I Much of the article presents numerous studies, and professional
090509 - opinion that questions efficacy of annual mamogram tests, especially
090510 - for women under 50. ref SDS 0 F641 She states expressly having
090511 - changed her own opinion, noting her favorable outcome at age 35, would
090512 - likely have been the same, if she had discovered her cancer through
090513 - self-examination a year or so later. ref SDS 0 TD6F, and later at
090514 - ref SDS 0 F664 The author seems to argue mamogram testing yields
090515 - false positives that cause patients to worry and undergo unnecessary
090516 - treatment, which in turn can cause debilitating, sometimes fatal, side
090517 - effects. ref SDS 0 OB3F She further notes mamograms often miss the
090518 - most aggressive cancers, ref SDS 0 9A4P, which occurred in Millie's
090519 - case. ref SDS 0 XW5M The article might be strengthened explaining the
090520 - role of cancer markers, clincial trials, and patient assistance for
090521 - treating cancer as a "chronic disease," which extend survival to enjoy
090522 - a life worth living, even with stage 4 cancer. ref SDS 0 OF7O
090523 - Finally, the author exposes superficial commercialization of medical
090524 - research ostensibly to develop a "cure" for cancer through marches,
090525 - walks, running, bake sales..., ref SDS 0 JO91, which would be better
090526 - invested helping patients and providers manage rising complexity
090527 - treating cancer as a "chronic disease," which Millie demonstrated
090528 - extends survival with quality that make life worth living. ref SDS 0
090529 - SU5F
090535 - ..
0908 - Progress
090901 - New York Times published a long story today on...
090903 - ..
090904 - Our Feel-Good War on Breast Cancer
090907 - http://www.nytimes.com/2013/04/28/magazine/our-feel-good-war-on-breast-cancer.html?hp&_r=0
090909 - ..
090910 - By PEGGY ORENSTEIN
090911 - Published: April 25, 2013
090913 - ..
090914 - Peggy Orenstein (email@example.com) is a contributing
090915 - writer for the magazine and the author, most recently, of
090916 - "Cinderella Ate My Daughter: Dispatches From the Front Lines
090917 - of the New Girlie-Girl Culture."
090919 - ..
090920 - Editor: Ilena Silverman
090921 - firstname.lastname@example.org
090923 - ..
090924 - Mamogram Limited Effectiveness
090927 - 1. I used to believe that a mammogram saved my life. I even
090928 - wrote that in the pages of this magazine. It was 1996, and
090929 - I had just turned 35 when my doctor sent me for an initial
090930 - screening ? a relatively common practice at the time ?
090931 - that would serve as a base line when I began annual
090932 - mammograms at 40. I had no family history of breast
090933 - cancer, no particular risk factors for the disease.
090935 - ..
090936 - 2. So when the radiologist found an odd, bicycle-spoke-like
090937 - pattern on the film - not even a lump - and sent me for a
090938 - biopsy, I wasn't worried. After all, who got breast cancer
090939 - at 35?
090941 - ..
090942 - 3. It turns out I did. Recalling the fear, confusion, anger
090943 - and grief of that time is still painful. My only solace
090944 - was that the system worked precisely as it should: the
090945 - mammogram caught my tumor early, and I was treated with a
090946 - lumpectomy and six weeks of radiation; I was going to
090947 - survive.
090949 - ..
090950 - Mamogram Testing False Negatives Missing Entirely Active Cancer
090953 - 4. By coincidence, just a week after my diagnosis, a panel
090954 - convened by the National Institutes of Health made
090955 - headlines when it declined to recommend universal screening
090956 - for women in their 40s; evidence simply didn't show it
090957 - significantly decreased breast-cancer deaths in that age
090958 - group. What's more, because of their denser breast tissue,
090959 - younger women were subject to disproportionate false
090960 - positives - leading to unnecessary biopsies and worry - as
090961 - well as false negatives, in which cancer was missed
090962 - entirely.
090964 - ..
090965 - When Millie returned home from surgery to remove cancer from her
090966 - breast we received in the mail late that night a letter from Kaiser
090967 - congratulating Millie on having a negative mamaogram, reported on
090968 - 020312 0930. ref SDS 2 YV3O
090970 - ..
090971 - Ms Orenstein's article continues...
090973 - 5. Those conclusions hit me like a sucker punch. "I am the
090974 - person whose life is officially not worth saving," I wrote
090975 - angrily. When the American Cancer Society as well as the
090976 - newer Susan G Komen foundation rejected the panel's
090977 - findings, saying mammography was still the best tool to
090978 - decrease breast-cancer mortality, friends across the
090979 - country called to congratulate me as if I'd scored a
090980 - personal victory. I considered myself a loud-and-proud
090981 - example of the benefits of early detection.
090984 - ..
090985 - Early Detection Extends Survival with Quality of Life
090988 - 6. Sixteen years later, my thinking has changed. As study
090989 - after study revealed the limits of screening - and the
090990 - dangers of overtreatment - a thought niggled at my
090991 - consciousness. How much had my mammogram really mattered?
090992 - Would the outcome have been the same had I bumped into the
090993 - cancer on my own years later? It's hard to argue with a
090994 - good result. After all, I am alive and grateful to be
090995 - here. But I've watched friends whose breast cancers were
090996 - detected "early" die anyway. I've sweated out what
090997 - blessedly turned out to be false alarms with many others.
090999 - ..
091000 - The author does not discuss Doctor Johnson's theory that early
091001 - detection enables timely treatment to prevent cancer from cascading
091002 - out of control, causing qaulity of life to decline that drives
091003 - patients into despair and death, reported on 030606 1630. ref SDS 5
091004 - N27L
091006 - ..
091007 - Millie faced this prospect in 2003, 9 months after surgery and 3
091008 - months after adjuvant care. PET scan testing showed 2 symptoms of
091009 - IBC, but the doctor didn't recognize them, during the meeting at
091010 - Kaiser on 030109 1600. ref SDS 4 L66M Moreover, the doctor
091011 - prescribed treatment for cellulitis diagnosed as "reaction to
091012 - radiation treatment," which actually was inflammation that is the 3rd
091013 - and conclusive symptom of IBC, ref SDS 4 KW5F, reported in the record
091014 - a year later on 040517 1200. ref SDS 10 N23J
091016 - ..
091017 - On 030606 Millie requested emergency meeting to examine sudden intense
091018 - inflammation in left breast, and new lumps under the left arm. By the
091019 - time the medical team was available to meet the doctor observed
091020 - reduced inflammation and again diagnosed reaction to radiation
091021 - performed nearly a year earlier. ref SDS 5 7C6W Millie requested
091022 - treatment to prevent cancer from cascading out of control. ref SDS 5
091023 - XQ3N Millie cited 20% rise in cancer marker. ref SDS 5 NE7L The
091024 - doctor refused to order care. ref SDS 5 XR70 Millie became very
091025 - emotional at the prospect of cancer spreading. ref SDS 5 P97J She
091026 - requested a biopsy to test the doctor's theory that rising symptoms do
091027 - not justify treatment. The doctor proposed doing a biopsy the
091028 - following month in July, if a scheduled CT test shows evidence of
091029 - cancer. ref SDS 5 NV5H Millie asked if treatment was withheld because
091030 - of advancing years at age 67? The doctor said withholding treatment
091031 - from the elderly is against the law. ref SDS 5 XR7I The doctor
091032 - further explained that cancer progresses quickly if not treated in
091033 - time, which seemed conflicting with refusing the patient's request for
091034 - immediate treatment based on patent evidence of recurrence.
091035 - ref SDS 5 N27L
091037 - ..
091038 - The following month on 030710 the team reviewed CT test performed on
091039 - 030626; reports of regional persistant dermal (skin) thickening left
091040 - breast; notes that invasion of the dermal lymphatics from known breast
091041 - cancer can present similarly. ref SDS 6 VM7I Despite continuing test
091042 - evidence of IBC the medical team failed to provide timely treatment
091043 - for another 8 months, beginning on 040420 2300. ref SDS 9 9Z5J This
091044 - treatment was delayed again because IBC symptoms were misdiagnosed
091045 - again and instead Millie was treated again for cellulitis, reported on
091046 - 040318 1615. ref SDS 7 IM6J
091048 - ..
091049 - Millie always wondered, if her IBC had been treated beginning on
091050 - 030109, when symptoms first presented in the PET scan test on 021218,
091051 - or later on 030606, when she begged for care to recover from
091052 - observable symptoms, or a month later on 030710 when CT imaging
091053 - expressly reported all 3 symptoms of IBC again - yes she wondered - if
091054 - she had been treated a 18 months earlier, could her cancer have gone
091055 - into remission for 16 years, as Ms Orenstein enjoyed, and then at that
091056 - point begun enjoyed another 10 year saga collaborating with the
091057 - medical team to deliver treatment that provides a quality of life
091058 - worth living.
091060 - ..
091061 - Ms Orenstein's article continues...
091063 - 7. Recently, a survey of three decades of screening published
091064 - in November in The New England Journal of Medicine found
091065 - that mammography's impact is decidedly mixed: it does
091066 - reduce, by a small percentage, the number of women who
091067 - are told they have late-stage cancer, but it is far more
091068 - likely to result in overdiagnosis and unnecessary
091069 - treatment, including surgery, weeks of radiation and
091070 - potentially toxic drugs. And yet, mammography remains
091071 - an unquestioned pillar of the pink-ribbon awareness
091072 - movement. Just about everywhere I go ? the supermarket,
091073 - the dry cleaner, the gym, the gas pump, the movie theater,
091074 - the airport, the florist, the bank, the mall - I see
091075 - posters proclaiming that "early detection is the best
091076 - protection" and "mammograms save lives." But how many
091077 - lives, exactly, are being "saved," under what
091078 - circumstances and at what cost? Raising the public
091079 - profile of breast cancer, a disease once spoken of
091080 - only in whispers, was at one time critically important,
091081 - as was emphasizing the benefits of screening. But there
091082 - are unintended consequences to ever-greater "awareness" -
091083 - and they, too, affect women's health.
091085 - ..
091086 - Breast cancer in your breast doesn't kill you; the disease
091087 - becomes deadly when it metastasizes, spreading to other
091088 - organs or the bones. Early detection is based on the
091089 - theory, dating back to the late 19th century, that the
091090 - disease progresses consistently, beginning with a single
091091 - rogue cell, growing sequentially and at some invariable
091092 - point making a lethal leap. Curing it, then, was assumed to
091093 - be a matter of finding and cutting out a tumor before that
091094 - metastasis happens.
091096 - ..
091097 - 8. The thing is, there was no evidence that the size of a
091098 - tumor necessarily predicted whether it had spread.
091099 - According to Robert Aronowitz, a professor of history and
091100 - sociology of science at the University of Pennsylvania and
091101 - the author of "Unnatural History: Breast Cancer and
091102 - American Society," physicians endorsed the idea anyway,
091103 - partly out of wishful thinking, desperate to "do something"
091104 - to stop a scourge against which they felt helpless. So in
091105 - 1913, a group of them banded together, forming an
091106 - organization (which eventually became the American Cancer
091107 - Society) and alerting women, in a precursor of today's
091108 - mammography campaigns, that surviving cancer was within
091109 - their power. By the late 1930s, they had mobilized a
091110 - successful "Women's Field Army" of more than 100,000
091111 - volunteers, dressed in khaki, who went door to door raising
091112 - money for "the cause" and educating neighbors to seek
091113 - immediate medical attention for "suspicious symptoms," like
091114 - lumps or irregular bleeding.
091117 - ..
091118 - Medical Mistakes Cause More Deaths than Automobiles Planes Trains
091119 - Cancer Deaths Not Reduced by Early Detection and Treatmnt
091122 - 9. The campaign worked - sort of. More people did
091123 - subsequently go to their doctors. More cancers were
091124 - detected, more operations were performed and more patients
091125 - survived their initial treatments. But the rates of women
091126 - dying of breast cancer hardly budged. All those increased
091127 - diagnoses were not translating into "saved lives." That
091128 - should have been a sign that some aspect of the
091129 - early-detection theory was amiss. Instead, surgeons
091130 - believed they just needed to find the disease even sooner.
091132 - ..
091133 - The author might consider the definition of "saved lives." Metastatic
091134 - cancer requires treament for "chronic disease" to extend quality of
091135 - life, shown by case study of Millie's care over nearly 10 years with
091136 - stage 4 cancer, reported on 061018 1003. ref SDS 11 N55F
091138 - ..
091139 - Patients die from failure to provide treatment in time to be effective
091140 - due to delays from continual bumbling endemic to large organizations.
091141 - Millie's patient history shows the management challenge that forces
091142 - patients to despair and then give up, reported on 040416 1045.
091143 - ref SDS 8 GN7J
091145 - ..
091146 - Treating cancer as a chronic disease exposes patients to risks of
091147 - continual mistakes that eventually prove fatal, reported in national
091148 - media on 990912 0926. ref SDS 1 0001
091150 - ..
091151 - Ms Orenstein's article continues...
091153 - 10. Mammography promised to do just that. The first trials,
091154 - begun in 1963, found that screening healthy women along
091155 - with giving them clinical exams reduced breast-cancer death
091156 - rates by about 25 percent. Although the decrease was
091157 - almost entirely among women in their 50s, it seemed only
091158 - logical that, eventually, screening younger (that is,
091159 - finding cancer earlier) would yield even more impressive
091160 - results. Cancer might even be cured.
091162 - ..
091163 - 11. That hopeful scenario could be realized, though, if women
091164 - underwent annual mammography, and by the early 1980s, it is
091165 - estimated that fewer than 20 percent of those eligible did.
091166 - Nancy Brinker founded the Komen foundation in 1982 to boost
091167 - those numbers, convinced that early detection and awareness
091168 - of breast cancer could have saved her sister, Susan, who
091169 - died of the disease at 36. Three years later, National
091170 - Breast Cancer Awareness Month was born. The khaki-clad
091171 - "soldiers" of the 1930s were soon displaced by millions of
091172 - pink-garbed racers "for the cure" as well as legions of
091173 - pink consumer products: pink buckets of chicken, pink
091174 - yogurt lids, pink vacuum cleaners, pink dog leashes. Yet
091175 - the message was essentially the same: breast cancer was a
091176 - fearsome fate, but the good news was that through vigilance
091177 - and early detection, surviving was within their control.
091179 - ..
091180 - 12. By the turn of the new century, the pink ribbon was
091181 - inescapable, and about 70 percent of women over 40 were
091182 - undergoing screening. The annual mammogram had become a
091183 - near-sacred rite, so precious that in 2009, when another
091184 - federally financed independent task force reiterated that
091185 - for most women, screening should be started at age 50 and
091186 - conducted every two years, the reaction was not relief but
091187 - fury. After years of bombardment by early-detection
091188 - campaigns (consider: "If you haven't had a mammogram, you
091189 - need more than your breasts examined"), women, surveys
091190 - showed, seemed to think screening didn't just find breast
091191 - cancer but actually prevented it.
091193 - ..
091194 - 13. At the time, the debate in Congress over health care reform
091195 - was at its peak. Rather than engaging in discussion about
091196 - how to maximize the benefits of screening while minimizing
091197 - its harms, Republicans seized on the panel's
091198 - recommendations as an attempt at health care rationing.
091199 - The Obama administration was accused of indifference to the
091200 - lives of America's mothers, daughters, sisters and wives.
091201 - Secretary Kathleen Sebelius of the Department of Health and
091202 - Human Services immediately backpedaled, issuing a statement
091203 - that the administration's policies on screening "remain
091204 - unchanged."
091206 - ..
091207 - Cancer "Triple Negative" Millie's Diagnosis Most Difficult to Treat
091210 - 14. Even as American women embraced mammography, researchers'
091211 - understanding of breast cancer - including the role of
091212 - early detection - was shifting. The disease, it has become
091213 - clear, does not always behave in a uniform way. It's not
091214 - even one disease. There are at least four genetically
091215 - distinct breast cancers. They may have different causes
091216 - and definitely respond differently to treatment. Two
091217 - related subtypes, luminal A and luminal B, involve tumors
091218 - that feed on estrogen; they may respond to a five-year
091219 - course of pills like tamoxifen or aromatase inhibitors,
091220 - which block cells' access to that hormone or reduce its
091221 - levels. In addition, a third type of cancer, called
091222 - HER2-positive, produces too much of a protein called human
091223 - epidermal growth factor receptor 2; it may be treatable
091224 - with a targeted immunotherapy called Herceptin.
091226 - ..
091227 - 15. The final type, basal-like cancer (often called "triple
091228 - negative" because its growth is not fueled by the most
091229 - common biomarkers for breast cancer - estrogen,
091230 - progesterone and HER2), is the most aggressive, accounting
091231 - for up to 20 percent of breast cancers.
091233 - ..
091234 - Millie diagnosed triple negative during first meeting with medical
091235 - team on 020321 1430. ref SDS 3 LA7O This severely limited available
091236 - treatments, and so increased requirement for comprehensive care.
091238 - ..
091239 - Ms Orenstein's article continues...
091241 - 16. More prevalent among young and African-American women, it
091242 - is genetically closer to ovarian cancer. Within those
091243 - classifications, there are, doubtless, further
091244 - distinctions, subtypes that may someday yield a wider
091245 - variety of drugs that can isolate specific tumor
091246 - characteristics, allowing for more effective treatment.
091247 - But that is still years away.
091249 - ..
091250 - 17. Those early mammography trials were conducted before
091251 - variations in cancer were recognized - before Herceptin,
091252 - before hormonal therapy, even before the widespread use of
091253 - chemotherapy. Improved treatment has offset some of the
091254 - advantage of screening, though how much remains
091255 - contentious. There has been about a 25 percent drop in
091256 - breast-cancer death rates since 1990, and some researchers
091257 - argue that treatment - not mammograms - may be chiefly
091258 - responsible for that decline. They point to a study of
091259 - three pairs of European countries with similar health care
091260 - services and levels of risk: In each pair, mammograms were
091261 - introduced in one country 10 to 15 years earlier than in
091262 - the other. Yet the mortality data are virtually identical.
091263 - Mammography didn't seem to affect outcomes. In the United
091264 - States, some researchers credit screening with a death-rate
091265 - reduction of 15 percent - which holds steady even when
091266 - screening is reduced to every other year. Gilbert Welch, a
091267 - professor of medicine at the Dartmouth Institute for Health
091268 - Policy and Clinical Practice and co-author of last
091269 - November's New England Journal of Medicine study of
091270 - screening-induced overtreatment, estimates that only 3 to
091271 - 13 percent of women whose cancer was detected by mammograms
091272 - actually benefited from the test.
091275 - ..
091276 - Eternal Vigilence Survive Stage 4 Cancer Nearly 10 Years
091277 - Treating Cancer as Chronic Disease Extend Quality of Life
091278 - Cancer Not Death Sentence Case Management Extend Quality Life
091281 - 18. If Welch is right, the test helps between 4,000 and 18,000
091282 - women annually. Not an insignificant number, particularly
091283 - if one of them is you, yet perhaps less than expected given
091284 - the 138,000 whose cancer has been diagnosed each year
091285 - through screening. Why didn't early detection work for
091286 - more of them? Mammograms, it turns out, are not so great
091287 - at detecting the most lethal forms of disease - like triple
091288 - negative - at a treatable phase. Aggressive tumors
091289 - progress too quickly, often cropping up between mammograms.
091290 - Even catching them "early," while they are still small, can
091291 - be too late: they have already metastasized. That may
091292 - explain why there has been no decrease in the incidence of
091293 - metastatic cancer since the introduction of screening.
091295 - ..
091296 - There is a sense in this article that people hope somehow there is a
091297 - "silver bullet" to avoid or cure cancer. If we are "good" and
091298 - "kind," eat vegatables, and exercise we can live forever. Cancer is a
091299 - natural aging process of mutating cells, like spoiling food. If we
091300 - are lucky to live long enough eventually, everyone "spoils."
091302 - ..
091303 - The challenge is not early detection to prevent getting cancer, but to
091304 - control and slow progression through treatment as a "chronic disease."
091306 - ..
091307 - This takes eternal vigilence, like national security - being thorough,
091308 - timely and comprehensive finding and delivering treatment in time to
091309 - be effective, because every treatment eventually fails by constantly
091310 - mutating cancer cells. An example treating cancer as a chronic
091311 - disease is Millie's patient history shown on 061018 1003. ref SDS 11
091312 - 0001
091314 - ..
091315 - Vigilence includes modalities, like mamograms and self-examination,
091316 - that sometimes bring early detection of cancer before metastasis. In
091317 - those cases there is potential for remission of months and years, as
091318 - with Ms Orenstein, whose cancer did not recur for 15 years.
091320 - ..
091321 - Ms Orenstein's article continues...
091323 - 19. At the other end of the spectrum, mammography readily
091324 - finds tumors that could be equally treatable if found
091325 - later by a woman or her doctor; it also finds those that
091326 - are so slow-moving they might never metastasize. As
091327 - improbable as it sounds, studies have suggested that about
091328 - a quarter of screening-detected cancers might have gone
091329 - away on their own. For an individual woman in her 50s,
091330 - then, annual mammograms may catch breast cancer, but they
091331 - reduce the risk of dying of the disease over the next 10
091332 - years by only .07 percent - from .53 percent to .46
091333 - percent. Reductions for women in their 40s are even
091334 - smaller, from .35 percent to .3 percent.
091337 - ..
091338 - Mamogram False Positives Unnecessary Treatments Life-ending Side Effects
091341 - 20. Page 4 of 9)
091343 - ..
091344 - If screening's benefits have been overstated, its
091345 - potential harms are little discussed. According to a
091346 - survey of randomized clinical trials involving 600,000
091347 - women around the world, for every 2,000 women screened
091348 - annually over 10 years, one life is prolonged but 10
091349 - healthy women are given diagnoses of breast cancer and
091350 - unnecessarily treated, often with therapies that
091351 - themselves have life-threatening side effects. (Tamoxifen,
091352 - for instance, carries small risks of stroke, blood clots
091353 - and uterine cancer; radiation and chemotherapy weaken the
091354 - heart; surgery, of course, has its hazards
091356 - ..
091357 - 21. Many of those women are told they have something called
091358 - ductal carcinoma in situ (D.C.I.S.), or ?Stage Zero?
091359 - cancer, in which abnormal cells are found in the lining of
091360 - the milk-producing ducts. Before universal screening,
091361 - D.C.I.S. was rare. Now D.C.I.S. and the less common
091362 - lobular carcinoma in situ account for about a quarter of
091363 - new breast-cancer cases ? some 60,000 a year. In situ
091364 - cancers are more prevalent among women in their 40s. By
091365 - 2020, according to the National Institutes of Health?s
091366 - estimate, more than one million American women will be
091367 - living with a D.C.I.S. diagnosis.
091369 - ..
091370 - 22. D.C.I.S. survivors are celebrated at pink-ribbon events as
091371 - triumphs of early detection: theirs was an easily
091372 - treatable disease with a nearly 100 percent 10-year
091373 - survival rate. The thing is, in most cases (estimates vary
091374 - widely between 50 and 80 percent) D.C.I.S. will stay right
091375 - where it is ? ?in situ? means ?in place.? Unless it
091376 - develops into invasive cancer, D.C.I.S. lacks the capacity
091377 - to spread beyond the breast, so it will not become lethal.
091378 - Autopsies have shown that as many as 14 percent of women
091379 - who died of something other than breast cancer unknowingly
091380 - had D.C.I.S.
091382 - ..
091383 - 23. There is as yet no sure way to tell which D.C.I.S. will
091384 - turn into invasive cancer, so every instance is treated as
091385 - if it is potentially life-threatening. That needs to
091386 - change, according to Laura Esserman, director of the Carol
091387 - Franc Buck Breast Care Center at the University of
091388 - California, San Francisco. Esserman is campaigning to
091389 - rename D.C.I.S. by removing its big "C" in an attempt to
091390 - put it in perspective and tamp down women?s fear. "D.C.I.S.
091391 - is not cancer," she explained. "It's a risk factor. For
091392 - many D.C.I.S. lesions, there is only a 5 percent chance of
091393 - invasive cancer developing over 10 years. That's like the
091394 - average risk of a 62-year-old. We don't do heart surgery
091395 - when someone comes in with high cholesterol. What are we
091396 - doing to these people?" In Britain, where women are
091397 - screened every three years beginning at 50, the government
091398 - recently decided to revise its brochure on mammography to
091399 - include a more thorough discussion of overdiagnosis,
091400 - something it previously dispatched with in one sentence.
091401 - That may or may not change anyone's mind about screening,
091402 - but at least there is a fuller explanation of the
091403 - trade-offs.
091405 - ..
091406 - 24. In this country, the huge jump in D.C.I.S. diagnoses
091407 - potentially transforms some 50,000 healthy people a year
091408 - into "cancer survivors" and contributes to the larger sense
091409 - that breast cancer is "everywhere," happening to
091410 - ?everyone.? That, in turn, stokes women?s anxiety about
091411 - their personal vulnerability, increasing demand for
091412 - screening - which, inevitably, results in even more
091413 - diagnoses of D.C.I.S. Meanwhile, D.C.I.S. patients
091414 - themselves are subject to the pain, mutilation, side
091415 - effects and psychological trauma of anyone with cancer and
091416 - may never think of themselves as fully healthy again.
091418 - ..
091419 - 25. Yet who among them would dare do things differently? Which
091420 - of them would have skipped that fateful mammogram? As
091421 - Robert Aronowitz, the medical historian, told me: "When
091422 - you've oversold both the fear of cancer and the
091423 - effectiveness of our prevention and treatment, even people
091424 - harmed by the system will uphold it, saying, "It's the only
091425 - ritual we have, the only thing we can do to prevent
091426 - ourselves from getting cancer."
091428 - ..
091429 - 26. What if I had skipped my first mammogram and found my
091430 - tumor a few years later in the shower? It's possible that
091431 - by then I would have needed chemotherapy, an experience
091432 - I'm profoundly thankful to have missed. Would waiting have
091433 - affected my survival? Probably not, but I'll never know
091434 - for sure; no woman truly can. Either way, the odds were in
091435 - my favor: my good fortune was not just that my cancer was
091436 - caught early but also that it appeared to have been
091437 - treatable.
091439 - ..
091440 - 27. (Page 5 of 9)
091442 - Note that word "appeared": one of breast cancer's nastier
091443 - traits is that even the lowest-grade caught-it-early
091444 - variety can recur years - decades - after treatment. And
091445 - mine did.
091447 - ..
091448 - 28. Last summer, nine months after my most recent mammogram,
091449 - while I was getting ready for bed and chatting with my
091450 - husband, my fingers grazed something small and firm beneath
091451 - the scar on my left breast. Just like that, I passed again
091452 - through the invisible membrane that separates the healthy
091453 - from the ill.
091455 - ..
091456 - 29. This latest tumor was as tiny and as pokey as before,
091457 - unlikely to have spread. Obviously, though, it had to go.
091458 - Since a lumpectomy requires radiation, and you can?t
091459 - irradiate the same body part twice, my only option this
091460 - round was a mastectomy. I was also prescribed tamoxifen to
091461 - cut my risk of metastatic disease from 20 percent to 12.
091462 - Again, that means I should survive, but there are no
091463 - guarantees; I won?t know for sure whether I am cured until
091464 - I die of something else - hopefully many decades from now,
091465 - in my sleep, holding my husband's hand, after a nice
091466 - dinner with the grandchildren.
091468 - ..
091469 - 30. My first instinct this round was to have my other breast
091470 - removed as well - I never wanted to go through this again.
091471 - My oncologist argued against it. The tamoxifen would lower
091472 - my risk of future disease to that of an average woman, he
091473 - said. Would an average woman cut off her breasts? I could
091474 - have preventive surgery if I wanted to, he added, but it
091475 - would be a psychological decision, not a medical one.
091477 - ..
091478 - 31. I weighed the options as my hospital date approached.
091479 - Average risk, after all, is not zero. Could I live with
091480 - that? Part of me still wanted to extinguish all threat. I
091481 - have a 9-year-old daughter; I would do anything ? I need to
091482 - do everything ? to keep from dying. Yet, if death was the
091483 - issue, the greatest danger wasn?t my other breast. It is
091484 - that, despite treatment and a good prognosis, the cancer
091485 - I?ve already had has metastasized. Preventive mastectomy
091486 - wouldn?t change that; nor would it entirely eliminate the
091487 - possibility of new disease, because there?s always some
091488 - tissue left behind.
091490 - ..
091491 - 32. What did doing ?everything? mean, anyway? There are days
091492 - when I skip sunscreen. I don?t exercise as much as I
091493 - should. I haven?t given up aged Gouda despite my latest
091494 - cholesterol count; I don?t get enough calcium. And, oh,
091495 - yeah, my house is six blocks from a fault line. Is living
091496 - with a certain amount of breast-cancer risk really so
091497 - different? I decided to take my doctor?s advice, to do only
091498 - what had to be done.
091500 - ..
091501 - 33. I assumed my dilemma was unusual, specific to the anxiety
091502 - of having been too often on the wrong side of statistics.
091503 - But it turned out that thousands of women now consider
091504 - double mastectomies after low-grade cancer diagnoses.
091505 - According to Todd Tuttle, chief of the division of surgical
091506 - oncology at the University of Minnesota and lead author of
091507 - a study on prophylactic mastectomy published in The Journal
091508 - of Clinical Oncology, there was a 188 percent jump between
091509 - 1998 and 2005 among women given new diagnoses of D.C.I.S.
091510 - in one breast - a risk factor for cancer ? who opted to
091511 - have both breasts removed just in case. Among women with
091512 - early-stage invasive disease (like mine), the rates rose
091513 - about 150 percent. Most of those women did not have a
091514 - genetic predisposition to cancer. Tuttle speculated they
091515 - were basing their decisions not on medical advice but on an
091516 - exaggerated sense of their risk of getting a new cancer in
091517 - the other breast. Women, according to another study,
091518 - believed that risk to be more than 30 percent over 10 years
091519 - when it was actually closer to 5 percent.
091521 - ..
091522 - 34. It wasn't so long ago that women fought to keep their
091523 - breasts after a cancer diagnosis, lobbying surgeons to
091524 - forgo radical mastectomies for equally effective
091525 - lumpectomies with radiation. Why had that flipped? I
091526 - pondered the question as I browsed through the "Stories of
091527 - Hope" on the American Cancer Society's Web site. I came
091528 - across an appealing woman in a pink T-shirt, smiling as she
091529 - held out a white-frosted cupcake bedecked with a pink
091530 - candle. In a first-person narrative, she said that she
091531 - began screening in her mid-30s because she had fibrocystic
091532 - breast disease. At 41, she was given a diagnosis of
091533 - D.C.I.S., which was treated with lumpectomy and radiation.
091534 - ?I felt lucky to have caught it early,? she said, though
091535 - she added that she was emotionally devastated by the
091536 - experience. She continued screenings and went on to have
091537 - multiple operations to remove benign cysts. By the time
091538 - she learned she had breast cancer again, she was looking at
091539 - a fifth operation on her breasts. So she opted to have
091540 - both of them removed, a decision she said she believed to
091541 - be both logical and proactive.
091543 - ..
091544 - 35. (Page 6 of 9)
091546 - I found myself thinking of an alternative way to describe
091547 - what happened. Fibrocystic breast disease does not predict
091548 - cancer, though distinguishing between benign and malignant
091549 - tumors can be difficult, increasing the potential for
091550 - unnecessary biopsies. Starting screening in her 30s
091551 - exposed this woman to years of excess medical radiation ?
091552 - one of the few known causes of breast cancer. Her
091553 - D.C.I.S., a condition detected almost exclusively through
091554 - mammography, quite likely never would become
091555 - life-threatening, yet it transformed her into a cancer
091556 - survivor, subjecting her to surgery and weeks of even more
091557 - radiation. By the time of her second diagnosis, she was so
091558 - distraught that she amputated both of her breasts to
091559 - restore a sense of control.
091561 - ..
091562 - 36. Should this woman be hailed as a survivor or held up as a
091563 - cautionary tale? Was she empowered by awareness or
091564 - victimized by it? The fear of cancer is legitimate: how we
091565 - manage that fear, I realized - our responses to it, our
091566 - emotions around it - can be manipulated, packaged, marketed
091567 - and sold, sometimes by the very forces that claim to
091568 - support us. That can color everything from our perceptions
091569 - of screening to our understanding of personal risk to our
091570 - choices in treatment. ?You could attribute the rise in
091571 - mastectomies to a better understanding of genetics or
091572 - better reconstruction techniques,- Tuttle said, ?but those
091573 - are available in Europe, and you don?t see that mastectomy
091574 - craze there. There is so much ?awareness? about breast
091575 - cancer in the U.S. I?ve called it breast-cancer
091576 - overawareness. It?s everywhere. There are pink garbage
091577 - trucks. Women are petrified.?
091579 - 37. "Nearly 40,000 women and 400 men die every year of breast
091580 - cancer," Lynn Erdman, vice president of community health
091581 - at Komen, told me. "Until that number dissipates, we don?t
091582 - think there?s enough pink."
091584 - ..
091585 - 38. I was sitting in a conference room at the headquarters of
091586 - Susan G. Komen, near the Galleria mall in Dallas. Komen
091587 - is not the country?s largest cancer charity ? that would be
091588 - the American Cancer Society. It is, however, the largest
091589 - breast-cancer organization. And although Komen?s image was
091590 - tarnished last year by its attempt to defund a Planned
091591 - Parenthood screening program, its name remains virtually
091592 - synonymous with breast-cancer advocacy. With its dozens of
091593 - races ?for the cure? and some 200 corporate partnerships,
091594 - it may be the most successful charity ever at branding a
091595 - disease; its relentless marketing has made the pink ribbon
091596 - one of the most recognized logos of our time. The ribbon
091597 - has come to symbolize both fear of the disease and the hope
091598 - it can be defeated. It?s a badge of courage for the
091599 - afflicted, an expression of solidarity by the concerned.
091600 - It promises continual progress toward a cure through
091601 - donations, races, volunteerism. It indicates community.
091602 - And it offers corporations a seemingly fail-safe way to
091603 - signal good will toward women, even if, in a practice
091604 - critics call "pinkwashing," the products they produce are
091605 - linked to the disease or other threats to public health.
091606 - Having football teams don rose-colored cleats, for
091607 - instance, can counteract bad press over how the N.F.L.
091608 - handles accusations against players of rape or domestic
091609 - violence. Chevron?s donations to California Komen
091610 - affiliates may help deflect what Cal OSHA called its
091611 - "willful violations" of safety that led to a huge refinery
091612 - fire last year in a Bay Area neighborhood.
091614 - ..
091615 - 39. More than anything else, though, the ribbon reminds women
091616 - that every single one of us is vulnerable to breast
091617 - cancer, and our best protection is annual screening.
091618 - Despite the fact that Komen trademarked the phrase ?for
091619 - the cure,? only 16 percent of the $472 million raised in
091620 - 2011, the most recent year for which financial reports are
091621 - available, went toward research. At $75 million, that's
091622 - still enough to give credence to the claim that Komen has
091623 - been involved in every major breast-cancer breakthrough
091624 - for the past 29 years. Still, the sum is dwarfed by the
091625 - $231 million the foundation spent on education and
091626 - screening.
091628 - ..
091629 - (Page 7 of 9)
091631 - ..
091632 - 40. Though Komen now acknowledges the debate over screening on
091633 - its Web site, the foundation has been repeatedly accused
091634 - of overstating mammography?s benefits while dismissing its
091635 - risks. Steve Woloshin, a colleague of Welch?s at Dartmouth
091636 - and co-author of the Not So Stories column in The British
091637 - Medical Journal...
091639 - ..
091640 - Not So Stories
091641 - How a charity oversells mammography
091643 - http://www.bmj.com/content/345/bmj.e5132.full?ijkey=WqUqgA.EgJq76&keytype=ref&siteid=bmjjournals%20
091645 - ...points to a recent Komen print ad that reads: ?The
091646 - five-year survival rate for breast cancer when caught early
091647 - is 98 percent. When it?s not? It decreases to 23
091648 - percent.? Woloshin called that willfully deceptive. The
091649 - numbers are accurate, but five-year survival rates are a
091650 - misleading measure of success, skewed by screening itself.
091651 - Mammography finds many cancers that never need treating and
091652 - that are, by definition, survivable. Meanwhile, some women
091653 - with lethal disease may seem to live longer because their
091654 - cancer was found earlier, but in truth, it's only their
091655 - awareness of themselves as ill that has been extended.
091656 - "Imagine a group of 100 women who received diagnoses of
091657 - breast cancer because they felt a breast lump at age 67,
091658 - all of whom die at age 70," Woloshin said. ?Five-year
091659 - survival for this group is 0 percent. Now imagine the same
091660 - women were screened, given their diagnosis three years
091661 - earlier, at age 64, but treatment doesn?t work and they
091662 - still die at age 70. Five-year survival is now 100
091663 - percent, even though no one lived a second longer.?
091665 - ..
091666 - 41. When I asked Chandini Portteus, vice president of
091667 - research, evaluation and scientific programs at Komen, in
091668 - January why the foundation continued to use that
091669 - statistic, she didn?t so much explain as sidestep. ?I
091670 - don?t think Komen meant to mislead,? she said. ?We know
091671 - that mammography certainly isn?t perfect. We also know
091672 - that it?s what we have and that it?s important in
091673 - diagnosing breast cancer.? (The statistic was subsequently
091674 - removed from its Web site.)
091676 - ..
091677 - 42. In "Pink Ribbon Blues," Gayle Sulik, a sociologist and
091678 - founder of the Breast Cancer Consortium, credits Komen (as
091679 - well as the American Cancer Society and National Breast
091680 - Cancer Awareness Month) with raising the profile of the
091681 - disease, encouraging women to speak about their experience
091682 - and transforming "victims" into "survivors." Komen, she
091683 - said, has also distributed more than $1 billion to research
091684 - and support programs. At the same time, the function of
091685 - pink-ribbon culture ? and Komen in particular ? has become
091686 - less about eradication of breast cancer than
091687 - self-perpetuation: maintaining the visibility of the
091688 - disease and keeping the funds rolling in. ?You have to look
091689 - at the agenda for each program involved,? Sulik said. ?If
091690 - the goal is eradication of breast cancer, how close are we
091691 - to that? Not very close at all. If the agenda is
091692 - awareness, what is it making us aware of? That breast
091693 - cancer exists? That it?s important? ?Awareness? has become
091694 - narrowed until it just means ?visibility.? And that?s where
091695 - the movement has failed. That?s where it?s lost its
091696 - momentum to move further.?
091699 - ..
091700 - Superficial Charity Walks Ribbons Misdirect Money and Effort
091703 - 43. Before the pink ribbon, awareness as an end in itself was
091704 - not the default goal for health-related causes. Now you'd
091705 - be hard-pressed to find a major illness without a logo, a
091706 - wearable ornament and a roster of consumer-product tie-ins.
091707 - Heart disease has its red dress, testicular cancer its
091708 - yellow bracelet. During "Movember? - a portmanteau of
091709 - "mustache" and "November" - men are urged to grow their
091710 - facial hair to "spark conversation and raise awareness" of
091711 - prostate cancer (another illness for which early detection
091712 - has led to large-scale overtreatment) and testicular
091713 - cancer. "These campaigns all have a similar superficiality
091714 - in terms of the response they require from the public,"
091715 - said Samantha King, associate professor of kinesiology and
091716 - health at Queen's University in Ontario and author of"Pink
091717 - Ribbons, Inc." "They're divorced from any critique of
091718 - health care policy or the politics of funding biomedical
091719 - research. They reinforce a single-issue competitive model
091720 - of fund-raising. And they whitewash illness: we're made
091721 - "aware" of a disease yet totally removed from the
091722 - challenging and often devastating realities of its
091723 - sufferers."
091725 - ..
091726 - The author might further consider that cancer research fund raising
091727 - campaigns mis-direct money and effort. If all the people and money
091728 - were invested to facilitate the doctor/patient partnership to reduce
091729 - medical mistakes by leveraging medical expertise, shown by case study
091730 - on 040416 1045. ref SDS 8 GN7J
091732 - ..
091733 - On 110512 0847 letter to Pam and thanking Millie's medical team notes
091734 - that investing time and effort for doctor patient partnership
091735 - leverages case management with well ordered record to extend survival
091736 - and quality of life better than spending time hikng and solicitating
091737 - donations for cancer research. ref SDS 19 166Q
091739 - ..
091740 - Professional care givers need help to resolve mounting medical
091741 - problems as cancer care continues over months and years. They are
091742 - eventually overwhelmed and give up. This is a big target of
091743 - opportunity for patients and those assisting patients with case
091744 - management.
091746 - ..
091747 - Ms Orenstein's article continues...
091749 - 44. I recalled the dozens of news releases I received during
091750 - last October's National Breast Cancer Awareness Month, an
091751 - occasion I observed in bed while recovering from my
091752 - mastectomy. There was the one from Komen urging me to make
091753 - a "curemitment" to ending breast cancer by sharing a
091754 - "message about early detection or breast self-awareness
091755 - that resonates with you"; the one about the town painting
091756 - itself pink for "awareness"; the one from a Web site
091757 - called Pornhub that would donate a penny to a
091758 - breast-cancer charity for every 30 views of its "big-" or
091759 - "small-breast" videos.
091761 - ..
091762 - 45. (Page 8 of 9)
091764 - Then there are the groups going after the new hot
091765 - "awareness" demographic: young women. "Barbells for
091766 - Boobies" was sponsoring weight-lifting fund-raisers to pay
091767 - for mammograms for women under 40. Keep A Breast (known
091768 - for its sassy "I ? Boobies" bracelets) urges girls to
091769 - perform monthly self-exams as soon as they begin
091770 - menstruating. Though comparatively small, these charities
091771 - raise millions of dollars a year ? Keep A Breast alone
091772 - raised $3.6 million in 2011. Such campaigns are often
091773 - inspired by the same heartfelt impulse that motivated Nancy
091774 - Brinker to start Komen: the belief that early detection
091775 - could have saved a loved one, the desire to make meaning of
091776 - a tragedy.
091778 - ..
091779 - 46. Yet there's no reason for anyone - let alone young girls -
091780 - to perform monthly self-exams. Many breast-cancer
091781 - organizations stopped pushing it more than a decade ago,
091782 - when a 12-year randomized study involving more than 266,000
091783 - Chinese women, published in The Journal of the National
091784 - Cancer Institute, found no difference in the number of
091785 - cancers discovered, the stage of disease or mortality rates
091786 - between women who were given intensive instruction in
091787 - monthly self-exams and women who were not, though the
091788 - former group was subject to more biopsies. The upside was
091789 - that women were pretty good at finding their own cancers
091790 - either way.
091792 - ..
091793 - 47. Beyond misinformation and squandered millions, I wondered
091794 - about the wisdom of educating girls to be aware of their
091795 - breasts as precancerous organs. If decades of
091796 - pink-ribboned early-detection campaigns have distorted the
091797 - fears of middle-aged women, exaggerated their sense of
091798 - personal risk, encouraged extreme responses to even
091799 - low-level diagnoses, all without significantly changing
091800 - outcomes, what will it mean to direct that message to a
091801 - school-aged crowd?
091803 - ..
091804 - 48. Young women do get breast cancer - I was one of them. Even
091805 - so, breast cancer among the young, especially the very
091806 - young, is rare. The median age of diagnosis in this
091807 - country is 61. The median age of death is 68. The chances
091808 - of a 20-year-old woman getting breast cancer in the next 10
091809 - years is about .06 percent, roughly the same as for a man
091810 - in his 70s. And no one is telling him to "check your
091811 - boobies."
091813 - ..
091814 - 49. "It's tricky," said Susan Love, a breast surgeon and
091815 - president of the Dr Susan Love Research Foundation. "Some
091816 - young women get breast cancer, and you don't want them to
091817 - ignore it, but educating kids earlier - that bothers me.
091818 - Here you are, especially in high school or junior high,
091819 - just getting to know to your body. To do this
091820 - search-and-destroy mission where your job is to find cancer
091821 - that?s lurking even though the chance is minuscule to none.
091822 - . . . It doesn't serve anyone. And I don?t think it
091823 - empowers girls. It scares them.?
091825 - ..
091826 - 50. Rather than offering blanket assurances that "mammograms
091827 - save lives," advocacy groups might try a more realistic
091828 - campaign tag line. The researcher Gilbert Welch has
091829 - suggested, "Mammography has both benefits and harms ?
091830 - that's why it's a personal decision." That was also the
091831 - message of the 2009 task force, which was derailed by
091832 - politics: scientific evidence indicates that getting
091833 - mammograms every other year if you are between the ages of
091834 - 50 and 74 makes sense; if you fall outside that age group
091835 - and still want to be screened, you should be fully informed
091836 - of the downsides.
091838 - ..
091839 - 51. Women are now well aware of breast cancer. So what's next?
091840 - Eradicating the disease (or at least substantially reducing
091841 - its incidence and devastation) may be less a matter of
091842 - raising more money than allocating it more wisely. When I
091843 - asked scientists and advocates how at least some of that
091844 - awareness money could be spent differently, their answers
091845 - were broad and varied. Many brought up the meager funding
091846 - for work on prevention. In February, for instance, a
091847 - Congressional panel made up of advocates, scientists and
091848 - government officials called for increasing the share of
091849 - resources spent studying environmental links to breast
091850 - cancer. They defined the term liberally to include
091851 - behaviors like alcohol consumption, exposure to chemicals,
091852 - radiation and socioeconomic disparities.
091854 - ..
091855 - 52. (Page 9 of 9)
091857 - Other researchers are excited about the prospect of
091858 - fighting or preventing cancer by changing the
091859 - "microenvironment" of the breast - the tissue surrounding a
091860 - tumor that can stimulate or halt its growth. Susan Love
091861 - likened it to the way living in a good or bad neighborhood
091862 - might sway a potentially delinquent child. "It may well
091863 - be," she told me, "that by altering the "neighborhood,"
091864 - whether it's the immune system or the local tissue, we can
091865 - control or kill the cancer cells." Taking
091866 - hormone-replacement therapy during menopause, which was
091867 - found to contribute to escalating rates of breast cancer,
091868 - may have been the biological equivalent of letting meth
091869 - dealers colonize a street corner. On the other hand, a
091870 - vaccine, the current focus of some scientists and
091871 - advocates, would be like putting more cops on the beat.
091873 - ..
091874 - 53. Nearly everyone agrees there is significant work to be done
091875 - at both ends of the diagnostic spectrum: distinguishing
091876 - which D.C.I.S. lesions will progress to invasive disease as
091877 - well as figuring out the mechanisms of metastasis.
091878 - According to a Fortune magazine analysis, only an estimated
091879 - .5 percent of all National Cancer Institute grants since
091880 - 1972 focus on metastasis; out of more than $2.2 billion
091881 - dollars raised over the last six years, Komen has dedicated
091882 - $79 million to such research ? a lot of money, to be sure,
091883 - but a mere 3.6 percent of its total budget during that
091884 - period.
091887 - ..
091888 - Treating Metastatic Cancer Chronic Disease Ignored
091889 - Money Effort Invested Prevent Cancer Wasted on Impossible Dream
091890 - Metastatic Cancer Requires Good Management for Effective Care Oxymoron
091893 - 54. "A lot of people are under the notion that metastatic work
091894 - is a waste of time," said Danny Welch, chairman of the
091895 - department of cancer biology at the University of Kansas
091896 - Cancer Center, "because all we have to do is prevent cancer
091897 - in the first place. The problem is, we still don't even
091898 - know what causes cancer. I'd prefer to prevent it
091899 - completely too, but to put it crassly, that's throwing a
091900 - bunch of people under the bus right now."
091902 - ..
091903 - 55. One hundred and eight American women die of breast cancer
091904 - each day. Some can live for a decade or more with
091905 - metastatic disease, but the median life span is 26 months.
091906 - One afternoon I talked to Ann Silberman, author of the
091907 - blog "Breast Cancer? But Doctor . . . I Hate Pink."
091908 - Silberman started writing it in 2009, at age 51, after
091909 - finding a lump in her breast that turned out to be cancer
091910 - - a Stage 2 tumor, which she was told gave her a survival
091911 - rate of 70 percent. At the time she was a secretary at a
091912 - school in Sacramento, happily married and the mother of
091913 - two boys, ages 12 and 22. Over the next two years, she had
091914 - surgery, did six rounds of chemo, took a trio of drugs
091915 - including Herceptin and, finally, thought she was done.
091917 - ..
091918 - 56. Four months later, a backache and bloated belly sent her to
091919 - the doctor; the cancer had spread to her liver. Why didn?t
091920 - the treatment work? No one knows. ?At this point, you know
091921 - that you?re going to die, and you know it?s going to be in
091922 - the next five years,? she told me. Her goal is to see her
091923 - youngest son graduate from high school next June.
091925 - ..
091926 - 57. It isn't easy to face someone with metastatic disease,
091927 - especially if you've had cancer yourself. Silberman's
091928 - trajectory is my worst fear; the night after we spoke, I
091929 - was haunted by dreams of cancer's return. Perhaps for that
091930 - reason, metastatic patients are notably absent from
091931 - pink-ribbon campaigns, rarely on the speaker's podium at
091932 - fund-raisers or races. Last October, for the first time,
091933 - Komen featured a woman with Stage 4 disease in its
091934 - awareness-month ads, but the wording carefully emphasized
091935 - the positive: "Although, today, she has tumors in her
091936 - bones, her liver and her lungs, Bridget still has hope."
091937 - (Bridget died earlier this month.)
091939 - ..
091940 - 58. "All that awareness terminology isn't about us," Silberman
091941 - said. "It's about surviving, and we're not going to
091942 - survive. We're going to get sick. We're going to lose
091943 - parts of our livers. We're going to be on oxygen. We're
091944 - going to die. It's not pretty, and it's not hopeful.
091945 - People want to believe in "the cure," and they want to
091946 - believe that cure is early detection. But you know what?
091947 - It's just not true."
091949 - ..
091950 - Awareness that everyone is going to die - get sick, lose parts, be on
091951 - oxygen - overlooks the fact that people with stage 4 metastatic cancer
091952 - can survive 5 - 10 plus years with quality of life that makes living
091953 - worthwhile: fun and productive.
091955 - ..
091956 - This takes doctor/patient partnership and in most cases an effective
091957 - patient assistant to help the team stay on track applying
091958 - evidence-based medical practice, and to help the patient during the
091959 - rough times of pain and despair when cancer starts to rise and the
091960 - medical team has to be mobilized to change treatment. Enhanced
091961 - patient assistance is further required when side effects of treatment
091962 - escalate, again requiring timely care for physical and emotional pain
091963 - management, and to mobilize the medical team to change treatment
091964 - again.
091968 - ..
091969 - Stage V Cancer Science New Treatments Manage Medical Team Yoeman's Work
091970 - Treating Cancer Chronic Disease Yoeman's Work Manage Medical Team
091971 - Cancer Cure Not Possible We Will Not Get Out of This Alive
091972 - Science Fashions New Treatments But Mobilize Medical Machinery Difficult
091975 - Ms Orenstein's article continues...
091977 - 59. Scientific progress is erratic, unpredictable. "We are all
091978 - foundering around in the dark," said Peter B. Bach,
091979 - director of the Center for Health Policy and Outcomes at
091980 - Memorial Sloan-Kettering Cancer Center. "The one thing I
091981 - can tell you is some of that foundering has borne fruit."
091982 - There are the few therapies, he said - like tamoxifen and
091983 - Herceptin - that target specific tumor characteristics, and
091984 - newer tests that estimate the chance of recurrence in
091985 - estrogen-positive cancers, allowing lower-risk women to
091986 - skip chemotherapy. "That's not curing cancer," Bach said,
091987 - "but it's progress. And yes, it's slow."
091989 - ..
091990 - 60. The idea that there could be one solution to breast cancer
091991 - - screening, early detection, some universal cure - is
091992 - certainly appealing. All of us - those who fear the
091993 - disease, those who live with it, our friends and families,
091994 - the corporations who swathe themselves in pink - wish it
091995 - were true. Wearing a bracelet, sporting a ribbon, running
091996 - a race or buying a pink blender expresses our hopes, and
091997 - that feels good, even virtuous. But making a difference is
091998 - more complicated than that.
092000 - ..
092001 - The fact that science cannot find a "cure" for cancer is no reason to
092002 - despair and give up. Cancer is endemic to life. If we don't die of
092003 - cancer it will be something else, because none of us "will get out of
092004 - this alive" - not the patient, not the doctor, not the nurse, not
092005 - health care executives, regulators, not insurance adjusters, friends,
092006 - neighbors - nobody lives forever - as Millie consoled Doctor Johnson
092007 - during a meeting at Kaiser on
092009 - ..
092010 - The objective is doing the best possible to enjoy quality of life
092011 - worth living, which Millie demonstrated for nearly 10 years getting
092012 - continual treatment for stage 4 cancer. Detecting and treating cancer
092013 - before stage 4, as occurred for the author, increases opportunity to
092014 - manage cancer for much, much longer, as the author has done.
092016 - ..
092017 - Making meaningful "difference" that prolongs quality of life takes
092018 - hard work pushing, pulling, prodding, and eventually demanding the
092019 - team apply evidence-based medical practice to deploy available
092020 - treatments in time to be effective, shown by Mil's letter to Kaiser
092021 - with copy to UCSF on 100527 0217. ref SDS 17 IZ7N
092023 - ..
092024 - Ms Orenstein's article concludes...
092026 - 61. It has been four decades since the former first lady Betty
092027 - Ford went public with her breast-cancer diagnosis,
092028 - shattering the stigma of the disease. It has been three
092029 - decades since the founding of Komen. Two decades since the
092030 - introduction of the pink ribbon. Yet all that well-meaning
092031 - awareness has ultimately made women less conscious of the
092032 - facts: obscuring the limits of screening, conflating risk
092033 - with disease, compromising our decisions about health care,
092034 - celebrating "cancer survivors" who may have never required
092035 - treating. And ultimately, it has come at the expense of
092036 - those whose lives are most at risk.
092038 - ..
092039 - Ms Orenstein understandably is disappointed her cancer recurred after
092040 - enjoying 16 years in remission.
092042 - ..
092043 - The author's prodigous talents for analysis, evident in her article
092044 - today, are just "what the doctor ordered" to empower the medical team
092045 - - with help of her "crew" - in providing "evidenced-based" care,
092046 - essential for treating cancer as a "chronic disease." This will
092047 - continue Millie's work showing metastatic cancer is not a death
092048 - sentence. Patients can enjoy a high quality of life while providers
092049 - explore new protocols for stage V cancer, cited in Millie's letter to
092050 - Doctor Rugo at UCSF on
092052 - ..
092053 - Paula reported that Kaiser applies "evidence-based" medical care as
092054 - best practice for treating cancer, discussed with Doctor Johnson on
092055 - 090725 2017. ref SDS 15 T58R
092057 - ..
092058 - Doctor Johnson noted at Kaiser that treating cancer as a "chronic
092059 - disease" is "yeoman's work," reported on 090213 1140. ref SDS 12 FZ4H
092060 - We wish Ms Orenstein God speed in her journey, and look forward to
092061 - another article in 5 or 6 years reporting amazing longevity from
092062 - working through challenges of "big time" health care, as Millie wrote
092063 - to her family on 090630 1237. ref SDS 14 IY6M Millie then rest easy
092064 - knowing her battles pioneering a path for stage V cancer will no
092065 - longer be a "unique" survivor, as Doctor Johnson reported on 090325
092066 - 0830, ref SDS 13 P39M, and again on 100302 0830. ref SDS 16 FC67