CONTACTS
SUBJECTS
Cancer Chronic Disease Survival Quality Life Worth Living Yoeman's W
0903 -
0903 - ..
0904 - Summary/Objective
0905 -
090501 - Follow up ref SDS 18 0000, ref SDS 17 0000.
090502 -
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
090530 -
090531 -
090532 -
090533 -
090535 - ..
0906 -
0907 -
0908 - Progress
0909 -
090901 - New York Times published a long story today on...
090903 - ..
090904 - Our Feel-Good War on Breast Cancer
090905 -
090906 -
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 (peggyjorenstein@gmail.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 - ilenas@nytimes.com
090923 - ..
090924 - Mamogram Limited Effectiveness
090925 -
090926 -
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
090951 -
090952 -
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...
090972 -
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.
090982 -
090984 - ..
090985 - Early Detection Extends Survival with Quality of Life
090986 -
090987 -
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...
091062 -
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.
091115 -
091117 - ..
091118 - Medical Mistakes Cause More Deaths than Automobiles Planes Trains
091119 - Cancer Deaths Not Reduced by Early Detection and Treatmnt
091120 -
091121 -
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...
091152 -
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
091208 -
091209 -
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...
091240 -
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.
091273 -
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
091279 -
091280 -
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...
091322 -
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.
091335 -
091337 - ..
091338 - Mamogram False Positives Unnecessary Treatments Life-ending Side Effects
091339 -
091340 -
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)
091441 -
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)
091545 -
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.?
091578 -
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
091642 -
091643 - http://www.bmj.com/content/345/bmj.e5132.full?ijkey=WqUqgA.EgJq76&keytype=ref&siteid=bmjjournals%20
091644 -
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.?
091697 -
091699 - ..
091700 - Superficial Charity Walks Ribbons Misdirect Money and Effort
091701 -
091702 -
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...
091748 -
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)
091763 -
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)
091856 -
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.
091885 -
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
091891 -
091892 -
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.
091965 -
091966 -
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
091973 -
091974 -
091975 - Ms Orenstein's article continues...
091976 -
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...
092025 -
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
092067 -
092068 -
092069 -
092070 -
092071 -
092072 -
092073 -
092074 -
092075 -
092076 -
092077 -
0921 -