Early cancer tests, surgeries questioned

Was this mastectomy necessary? It’s a question few breast cancer survivors want to ask, and one that few are likely to answer absolutely. But after years of aggressive emphasis on early diagnosis and treatment, some previous imperatives are being called into question. Noting that breast biopsy has long been considered the “gold standard,” a report in today’s New York Times addresses the new rethinking:

As it turns out, diagnosing the earliest stage of breast cancer can be surprisingly difficult, prone to both outright error and case-by-case disagreement over whether a cluster of cells is benign or malignant, according to an examination of breast cancer cases by The New York Times.

Advances in mammography and other imaging technology over the past 30 years have meant that pathologists must render opinions on ever smaller breast lesions, some the size of a few grains of salt. Discerning the difference between some benign lesions and early stage breast cancer is a particularly challenging area of pathology, according to medical records and interviews with doctors and patients.

Diagnosing D.C.I.S. “is a 30-year history of confusion, differences of opinion and under- and overtreatment,” said Dr. Shahla Masood, the head of pathology at the University of Florida College of Medicine in Jacksonville. “There are studies that show that diagnosing these borderline breast lesions occasionally comes down to the flip of a coin.”

Much of the current finger-pointing is toward pathologists, where their money comes from, whether they are ‘certified’ or not and in general, how good a job they do.

In 2006, Susan G. Komen for the Cure, an influential breast cancer survivors’ organization, released a startling study. It estimated that in 90,000 cases, women who receive a diagnosis of D.C.I.S. or invasive breast cancer either did not have the disease or their pathologist made another error that resulted in incorrect treatment.

After the Komen report, the College of American Pathologists announced several steps to improve breast cancer diagnosis, including the certification program for pathologists.

For the medical community, the Komen findings were not surprising, since the risk of misdiagnosis had been widely written about in medical literature. One study in 2002, by doctors at Northwestern University Medical Center, reviewed the pathology in 340 breast cancer cases and found that 7.8 percent of them had errors serious enough to change plans for surgery.

This space has argued occasionally for reconsideration of yearly mammograms and for longer, stronger consideration of other options before a mastectomy is performed. Especially in the case of older women.

Would I insist on further studies or opt for less radical treatment if I were diagnosed with breast cancer today? Probably. Can I undo the mastectomy I had at 72? Not exactly. Second-guessing is beside the point for someone who is healthy and fit, but asking questions won’t ever hurt.

Earliest Steps to Find Breast Cancer Are Prone to Error – NYTimes.com.

Your arteries know your REAL age

1.11.09: CHD, here we come!
Image by Team Dalog via Flickr

Heart attacks, strokes and a long list of other artery-related afflictions top the list of health risks for the 50-and-over population — and a rising number of those even younger. So figuring how old you really are is an increasingly big deal. If your history includes cigarettes and fast food in abundance you might not want to know. But your arteries hold important information.

Wall Street Journal writer Ron Winslow reports on the intricate business of determining your vascular age — and why that’s an important determination to make.

Several tools are available that enable doctors and patients to calculate vascular age. These suggest there can be a substantial difference between how old you are and how old your blood vessels are. For instance, the vascular age of a 35-year-old man who smokes and has diabetes, high blood pressure and abnormal cholesterol could be as high as 76 years old—more than double his chronological age, according to a recent study. The arteries of a 30-year-old woman with similar risk factors could be equivalent to those of an average woman who is more than 80 years old.

Such a calculation “gives a sense that your risk-factor burden is making you age faster than you think you are,” says Donald Lloyd-Jones, a preventive cardiologist at Northwestern University, Chicago, who co-authored the recent study, which appeared in the journal Circulation last August. “The more you can make it concrete, the better you can impart information about risk.”

The good news, doctors say, is that by taking steps to reduce risk factors and the damage they inflict on arteries, it is possible to turn back the clock on vascular age.

Some of us — long-time smokers, members of a family with genetic problems that can’t be overcome — might not be able to access the good news. But many can, and for them, a few changes in lifestyle, or manageable medications, can make a lifetime of difference.

  • A 42-year-old man who smokes and has total cholesterol of 180, good cholesterol (HDL) of 45 and systolic blood pressure of 125, has a vascular age of a 54-year-old. If he quits smoking, his vascular age could drop to 42, the same as his chronological age.
  • A 52-year-old nonsmoking woman, who has total cholesterol of 220, HDL of 44 and systolic blood pressure of 135, has a vascular age of a 68-year-old. If the woman reduces her cholesterol below 200, her vascular age could drop to 59 years old.

If you’re feeling your age today, maybe your arteries are trying to tell you something.

Arteries Can Reveal Your Risk of Heart Disease – WSJ.com.

When Mom & Dad go wandering: dementia on a relentless rise

“MISSING,” the sign reads. “Distinguished-looking elderly man. 6′ 1” slightly stooped. Gray hair. Wearing dark blue sweater and gray slacks. Name: George; does not always respond. Suffering from mild dementia. Wandered away from the Laurel Village shopping center area. Please call 415-xxx-xxxx with any information.”

The sad, 8″ x 10″ flyer has appeared (once the words were slightly different, but it was clearly the same George) at the bus stop near my home twice in recent months. I kept the number in my wallet for a while, hoping I might spot him because I walk the city myself. But the difference is that I have on a warm jacket — it’s way too cold in San Francisco, especially after dark, for only a sweater — and I know how to get home.  I have wanted to call the number and learn whether George got home, but it seems intrusive.

Last year for the first time, as reporter Kirk Johnson writes in The New York Times, people like George and a 60-year-old Virginia woman named Freda Machett accounted for more missing-person alerts than children and adolescents. They are confused and lost, and often are not found in time.

Ms. Machett, 60, suffers from a form of dementia that attacks the brain like Alzheimer’s disease and imposes on many of its victims a restless urge to head out the door. Their journeys, shrouded in a fog of confusion and fragmented memory, are often dangerous and not infrequently fatal. About 6 in 10 dementia victims will wander at least once, health care statistics show, and the numbers are growing worldwide, fueled primarily by Alzheimer’s disease, which has no cure and affects about half of all people over 85.
It started with five words — ‘I want to go home’ — even though this is her home,” said Ms. Machett’s husband, John, a retired engineer who now cares for his wife full time near Richmond. She has gone off dozens of times in the four years since receiving her diagnosis, three times requiring a police search. “It’s a cruel disease,” he said.
“You have to stop thinking logically, because the people you’re looking for are no longer capable of logic,” said Robert B. Schaefer, a retired F.B.I. agent who cared for his wife, Sarah, for 15 years at home through her journey into Alzheimer’s. He now leads two-day training sessions for the Virginia Department of Criminal Justice Services.

How to deal with dementia is the most bewildering of end-of-life issues, whether for oneself or for a family member. Most of us would choose almost any other scenario for our last months or years, but the choice is often not ours to make. We can file advance directives (mine includes a “Dementia Provision“) and express our wishes and do brain exercises; still, one in seven Americans, according to most fairly recent reports, now suffers from dementia and the numbers are on the rise.

Here’s one interesting perspective. My greatly beloved brother-in-law, who recently relocated with my sister to a retirement community, has Parkinson’s. Though his mobility and function are diminished, the disease has yet to affect his mind. Several weeks ago he told me he no longer fears dementia. “I see people more and more with varying stages of dementia,” he said, “and I believe you can be happy.”

But you can also wander off.

More Wander Off in Fog of Age – NYTimes.com.

How not to get Alzheimer's

Of all the Big Fears, for aging parents or our aging selves, Alzheimer’s probably ranks #1. So what if we could stave it off?

A new project, the Cognitive Fitness and Innovative Therapies, or CFIT, is trying to keep people at risk for Alzheimer’s intellectually and physically fit with quizzes and other cognitive challenges to see if onset of the disease can be delayed, perhaps indefinitely. The program, which is being advised by many famous names in Alzheimer’s research and treatment, also promotes diet changes and maintaining a social life to try to slow cognitive decline and lower the risk for Alzheimer’s.

Try some problems some people practice to delay the onset of Alzheimer’s.

The Wall Street Journal’s invitation to try a few of these Alzheimer’s-prevention exercises seemed tempting for this reporter, so I clicked on over. It should be noted here that although I hold undergraduate and graduate degrees from reputable institutions, they are in Art and Short Fiction. These exercises are not for the faint-hearted, or the right-brained. (Actually, after following a few more links and trying another quiz it was determined that my right brain/left brain dominance is split 16 to 16; this may be the problem.) Maybe they are for the MIT alumni.

Kenneth S. Kosik, co-director of the Neuroscience Research Institute at the University of California, Santa Barbara, launched CFIT with a center in Santa Barbara last year. Dr. Kosik recommends that individuals start efforts to prevent the disease in their 50s.

“By the time someone walks in my door with symptoms of the disease, it’s too late” to stop it, says Dr. Kosik, who plans to open four CFIT centers in New York and California. The idea behind the new research is that lifestyle interventions may delay or prevent the disease before symptoms appear—or slow the progression of Alzheimer’s once they do manifest.

The CFIT exercises seem to go a step — or perhaps a leap — farther than the SharpBrain exercises, which are also recommended by all sorts of people who understand brain function. (And seem, I have to say, a lot more like fun and less like Alzheimer’s prevention.) Any of them will keep you awake, and quite possibly stave off dementia.

The shift in thinking has been bolstered by public health efforts to prevent cognitive decline and delay or prevent Alzheimer’s disease, which affects some 5.3 million Americans. A 2007 report by the Centers for Disease Control and Prevention and the Alzheimer’s Association, a nonprofit group that funds research and supports advocacy and education, called for implementing findings on exercise and diet into actions people can do to maintain cognitive health. A CDC review of the scientific literature is expected to be released this year. The groups have been working together to gather data from individual states on the extent of cognitive impairment and meeting with state health officials to develop public campaigns to promote brain health.

Scientists don’t know exactly what causes Alzheimer’s, a progressive brain disorder that accounts for the majority of dementia cases, although genetics and age likely play a role. There are only four drugs approved for the disease, but these just treat individual symptoms and don’t stop the relentless course of the illness. New medicines are in testing but are likely to take years before they reach medical clinics.

This space highly recommends that you get started right away. We all want to believe it’s not too late.

Ways You Can Stave Off Alzheimer’s – WSJ.com.

Diet, exercise and Alzheimers

These paragraphs are a segue from talk of holiday festivities, over the past several days,  into the very un-festive subject of Alzheimer’s disease.

Part of the conversation at the very festive Thanksgiving dinner I was lucky to enjoy (without having cooked a single dish!) centered around food for the brain. One argument was that the good stuff for one’s neurotransmitters — egg yolks, broccoli, soy, starches — should be meticulously watched. I heard my mother’s voice in my head in response. “If you have three meals a day that look pretty on the plate,” she liked to advise, “you’re getting the proper diet.” When pressed she would explain that “pretty” equates to “color-coordinated,” i.e.: toast/bacon/scrambled eggs with parsley; or broccoli/carrots/potatoes/hamburger. I can’t remember whether our plates were 9-inch or otherwise.

Then there is the larger issue of exercise. Fitness, and occasionally brain exercise, have been contemplated several times in this space over the past few months (10/5: How’s your brain fitness today?; 9/7: The new best thing.) These theories hold that it is possible to strengthen, possibly even build anew, those neurotransmitters.

The definitive word on all this has not been written, and answers surely won’t originate with someone who barely passed Science I-II for the math/science requirement of her BA in Art. But some fascinating studies are being done, and new American Recovery and Reinvestment Funds will be going to projects that will be the focus of this space tomorrow.

Meanwhile, Alzheimer’s and various forms of dementia remain the ultimate tragedy in millions of lives, diet and brain exercise and clean living in general notwithstanding.

One of the most poignant insights into this disease you’ll be likely ever to see is currently offered by the PBS series Life (Part 2.) It follows a beautiful, articulate woman named Mary Ann Becklenberg as she confronts her own decline with incredible courage. What science may find answers for in the next few years, Mary Ann Becklenberg is exploring in real time. Schedules and clips are on the Life (Part 2) website.

Chances are, whether you’re over 50 or not, your life will be impacted by dementia. I, for one, am grateful for science and for Mary Ann Becklenberg.

Leaving Cancer Alone

We don’t talk a lot about not treating cancer. But as mentioned recently in this space, leaving it the heck alone is an option that merits consideration, particularly in the case of breast and prostate cancers detected very early on.  Now comes further news, reported by New York Times health writer Gina Kolata, of studies showing that some other cancers might also go away by themselves.

Call it the arrow of cancer. Like the arrow of time, it was supposed to point in one direction. Cancers grew and worsened.

But as a paper in The Journal of the American Medical Association noted last week, data from more than two decades of screening for breast and prostate cancer call that view into question. Besides finding tumors that would be lethal if left untreated, screening appears to be finding many small tumors that would not be a problem if they were left alone, undiscovered by screening. They were destined to stop growing on their own or shrink, or even, at least in the case of some breast cancers, disappear.

The Times article cites studies of testicular, cervical, kidney and other cancers that suggest some, left untreated, might simply go away; the trick now is to begin identifying which these would be.

I don’t know anyone who would opt out of treatment when it is likely to offer restored health. But especially for older populations, the choice of not treating a small cancer could be more frequently and seriously discussed.

Cancer cells and precancerous cells are so common that nearly everyone by middle age or old age is riddled with them, said Thea Tlsty, a professor of pathology at the University of California, San Francisco. That was discovered in autopsy studies of people who died of other causes, with no idea that they had cancer cells or precancerous cells. They did not have large tumors or symptoms of cancer. “The really interesting question,” Dr. Tlsty said, “is not so much why do we get cancer as why don’t we get cancer?”The earlier a cell is in its path toward an aggressive cancer, researchers say, the more likely it is to reverse course. So, for example, cells that are early precursors of cervical cancer are likely to revert. One study found that 60 percent of precancerous cervical cells, found with Pap tests, revert to normal within a year; 90 percent revert within three years.

And the dynamic process of cancer development appears to be the reason that screening for breast cancer or prostate cancer finds huge numbers of early cancers without a corresponding decline in late stage cancers.

If every one of those early cancers were destined to turn into an advanced cancer, then the total number of cancers should be the same after screening is introduced, but the increase in early cancers should be balanced by a decrease in advanced cancers.

That has not happened with screening for breast and prostate cancer. So the hypothesis is that many early cancers go nowhere. And, with breast cancer, there is indirect evidence that some actually disappear.

A sister who is six years older than I was diagnosed with breast cancer at 72, had a mastectomy and is cancer free. Six years later I was diagnosed with breast cancer, had a mastectomy and am cancer free. Last week I visited a college classmate who had been diagnosed two weeks ago with breast cancer; she had a mastectomy and is cancer free. Cancer free is good. But what if — just what if — one of those cancers might have disappeared without major surgery?

Disappearing tumors are well known in testicular cancer. Dr. Jonathan Epstein at Johns Hopkins says it does not happen often, but it happens.

It is harder to document disappearing prostate cancers; researchers say they doubt it happens. Instead, they say, it seems as if many cancers start to grow then stop or grow very slowly, as has been shown in studies like one now being done at Johns Hopkins. When men have small tumors with cells that do not look terribly deranged, doctors at Johns Hopkins offer them an option of “active surveillance.” They can forgo having their prostates removed or destroyed and be followed with biopsies. If their cancer progresses, they can then have their prostates removed.

Almost no one agrees to such a plan. “Most men want it out,” Dr. Epstein said. But, still, the researchers have found about 450 men in the past four or five years who chose active surveillance. By contrast, 1,000 a year have their prostates removed at Johns Hopkins. From following those men who chose not to be treated, the investigators discovered that only about 20 percent to 30 percent of those small tumors progressed. And many that did progress still did not look particularly dangerous, although once the cancers started to grow the men had their prostates removed.

In Canada, researchers are doing a similar study with small kidney cancers, among the few cancers that are reported to regress occasionally, even when far advanced.

One of the things we post-mastectomy women were talking about last week was how we might handle a recurrence. The reality is, as we have all already proved: you live long enough, you get stuff. Maybe someone at Johns Hopkins (or elsewhere; Kaiser San Francisco would suit me fine) will undertake a study in which older women with small breast cancers can opt for “active surveillance” rather than major surgery. Should I qualify, I would enroll. To this admittedly untrained and unscientific survivor it seems a study whose time has come.

Cancers Can Vanish Without Treatment, but How? – NYTimes.com.

Cancer, Viruses & Informed Consent

A commentary about cancer screenings and surrounding questions posted yesterday brought a thoughtful reader response: “Science, including public health,” wrote davidlosangeles, “is an evolving process.”  Unquestionably so.

What we the consuming public need to understand is not the science as much as the personal responsibility. Today’s New York Times features another story on the front page of the Business section (some of us still follow old-fashioned newsprint) by Duff Wilson about “Research Uproar at a Cancer Clinic”, namely the highly regarded Carle Foundation Cancer Center in Urbana, IL. It’s another instance of respected professionals questioning each others’ respectability — or protocols, or carefulness, to use gentler terms than are actually being used. One of the issues raised is that of informed consent, and here is where we the consuming public come in. Whether we are cancer patients, CFIDS sufferers or mostly healthy people susceptible to the usual ails, it is incumbent upon the individual to know what he or she is agreeing to, and to know as much as possible about the projected outcome. We’re all in a giant clinical trial here on the planet. Nobody really knows about the outcome, but participation in mini-trials along the way can be valuable and is certainly laudable. Just know what you’re doing.

I am a continuing participant in the Women’s Health Initiative study now well into its second decade, though the primary issues are over and done with. I didn’t try any new hormone replacement therapies or drastic lifestyle changes, mainly because I’m pretty wimpish, but I read every word of the small print in the reams of documents that came along and tried hard to appreciate what the pitfalls and premises were. It was a valuable study, and hopefully will continue to turn up usable data.

Other studies are underway, and more will undoubtedly begin, regarding the current hoopla over XRMV, and H1N1. And heaven only knows how many other viruses, techonological advances, genetic possibilities and scientific wonders are out there to create great harm or great benefit.

Since the benefits are to the buyers, it’s appropriate that the buyer beware.

Modeling how to die

My remarkable friend Mary died yesterday, after showing us how to do it. Not when, mind you, because she was far too young and energetic — just how. How to question and oppose, to look at options, and eventually to accept the fact that life is fine and finite and go with grace into whatever lies ahead.

Diagnosed with pancreatic cancer barely a year ago, Mary began what would be a studied exploration of traditional and experimental interventions to see if she might wrangle some extra quality time on the planet that she had carefully nurtured throughout her life. Almost as importantly – most importantly to her host of concerned friends – she and her husband Tom signed up on CaringBridge. Immediately, her host of friends also signed on, forming a sort of cybercircle around the family.

As the journey progressed, they would post pictures and notes about their travels and travails, filled with exuberant photos, irrepressible humor and a clear-eyed view of our shared mortality. Friends and relations would sign in with their own comments. Sometimes the latter would include off-beat ideas for something else to fling in the face of the disease; more often they would be notes about how Mary and Tom were brought spiritually into other circles when they couldn’t be physically present. Sometimes they would be long and rambling; more often they would be simple affirmations of how the couple and their family were being held close in so many hearts.

It was an extraordinary gathering. With their three grown children and a few others on site, there was relatively little taking-of-casseroles over these months, though Mary was always the first to show up with a giant jug of homemade chicken soup whenever some affliction struck at my house (and many others.) The cybercircle kept us regularly informed, assured us that we were part of the journey, and served, I believe, as a constant reminder to Mary and Tom that dozens and dozens of their friends were at their virtual side along the way. It helped that both of the central characters – and they were central characters in all the best senses – were thoughtful and eloquent writers.

While preparing for a new round of treatment not long ago, Mary and Tom learned that her tumors had returned with a vengeance. So instead of setting out for one adventure they settled in for another. Hospice was called in, their children gathered even closer. Postings in cyberspace documented the passage of those days, from occasional sunset walks into the nearby hills to readings of comments from friends, as Mary grew weaker, that might win what Tom described as the ultimate honor, “the coveted arched eyebrow.”

As she died, Mary’s family fluffed the pillows and administered “magic drops and potions, all of which helped only sort of.” Afterward, Tom opened the window as a friend had prompted, ” to free her spirit, not that she needed any help from me” and hung their Revolutionary War era ‘Liberty’ flag out front.  And sent a final note into cyberspace for the ever-expanding circle of friends: “All hail, Mary, so very, very full of grace.”