Brief Report: Annual Meeting of the Metastatic Breast Cancer Network

The Metastatic Breast Cancer Network held its fifth annual meeting in Baltimore over this past weekend. Most of the nearly 300 registrants were women living with MBC.

The lively group of women coalesced in the face of unexpected, pre-seasonal wintry weather. At an evening reception they stood, sat, waited for drinks and lined up for buffet food. Some lingered, chatting at round tables for well over an hour beyond the party’s official end-time. Over breakfast and lunch breaks the next day, there was plenty of reconnecting, hugs and catching up.

Like other medical conferences, there were plenary and breakout sessions on the educational program. You could choose, for example, between panels on “Treatment of Bone Metastases,” “Role of Surgery in Soft Tissue Mets” and “Managing Side Effects.”  Later, fuzzier and perhaps more intense sessions covered “Role of the Caregiver,” “Nutrition and Wellness” and a “Living with MBC.” Plenary talks ranged from introductory, light remarks to hour-long lectures on breast cancer immunotherapy, clinical trials and epigenetics. I took extensive notes.

Two highlights from this noteworthy gathering:

In introductory remarks shortly after 9AM, MBCN Board member Shirley Mertz recalled attending her first conference of this group, and the feelings she experienced upon meeting other women in similar straits. Her message was this: “Take a look around, you are not alone.”

Late in the day Dr. Stephen Baylin, a professor of oncology and medicine, prefaced his talk as follows: “It’s a privilege – talking with you, hearing what the disease is like, hearing your questions.” He was standing at the podium of Turner Auditorium at Johns Hopkins. “Please teach me,” he said – rare words emanating from the front of a prestigious medical school lecture hall.

Indeed, there’s a lot a doctor might learn at a conference like this. I did, for sure.

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Arizona Cheerleaders Cause Community Stir With Breast Cancer Awareness Shirts

This story, shared today by Debbie Woodbury, warrants ML Annals of Pink inclusion:

The Arizona Republic reports on a divided community in Gilbert, AZ. At issue is the high school cheerleading team’s plan to wear pink tee shirts with the slogan: “Feel for lumps – save your bumps” on the back. The group’s intention was to raise awareness and funds for the Susan G. Komen Foundation. 

The school’s principal said no to the controversial outfits due to their “unacceptably suggestive” content.

What strikes me, among other interesting aspects of this story and what it reflects about BC awareness in 2011, is how the arguments (so needless!) about fundraising play out so differently, depending where you live and the newspapers you might read.

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Mammograms Could Save More Lives Than You Might Think

I’m wondering is how to bring mainstream health journalists and women who are, lately, choosing not to have mammograms, to their senses about a persuasive but flawed argument put forth by a Dartmouth epidemiologist and others in a crew of seemingly like-minded, hopefully well-intentioned, some perhaps tenure-seeking and others grant-needing, circulatory bias-confirming academics who meet and discuss and write about the so-called dangers of mammography.

Maybe some doctors and journalists think they’re doing the right thing by informing a naïve body of women who, in the words of an LA Times writer today, think only correlative and simple thoughts.

From Screening mammograms save fewer lives than you think:

If you or someone you know discovered she had breast cancer thanks to routine mammography screening, and if you or that friend with breast cancer got treatment and today is cancer-free, it’s natural to assume that the mammogram was a life-saver.

But odds are, it wasn’t….

First things first: the title makes an assumption about what I, or you, or any reader, thinks.

Second, the story offers two factoids: first – that over 75% of women diagnosed with BC by screening mammography wouldn’t have died from the cancer if they hadn’t had mammography; and second – that no more than 25% of those same women can rightly credit a mammogram for saving their lives. But this is just one stat, or falsehood, based on the true, assumption-free relationship between 75% and 25%.

Dr. H. Gilbert Welch, who recently likened mammography-taking to gambling, plays freely with impressive-sounding information sources. He and his coauthor used data from the NCI. Seemingly hard to argue with those kinds of numbers. But they used old data, again, and employ numerous assumptions (what the authors call generous, but I wouldn’t) to render calculations and “prove” their point published in the Archives of Internal Medicine.

The manipulative tone is set in the paper’s abstract:

“…We created a simple method to estimate the probability that a woman with screen-detected breast cancer has had her life saved…

Simple? Don’t you believe it.

There’s a Well post in the New York Times today covering the same Archives of Internal Medicine article. Not surprisingly, this draws positive feedback in the comments and Twitter-chatter. Some of the more understandable discussion comes from women with metastatic disease whose tumors were missed by screening mammography. Notably, neither paper quotes an oncologist.

Here in the U.S. where we do spend too much on health care, we all know women whose breast tumors were missed by screening mammograms. This happens, and it’s awful, but it doesn’t and certainly shouldn’t happen so often as some doctors seem to think. Extrapolating from personal observations to draw conclusions about a procedure’s value is flawed reasoning, either way.

I agree with many of Dr. Susan Love’s school, and most of the NBCC agenda, and others that say breast cancer prevention would be better than treatment. How could I not?

But until there’s a prevention for BC, which I’m sorry to report is unlikely to happen before 2020, especially because it’s really 15 or 20 or maybe even more diseases that would, presumably, need distinct methods of prevention, and until there are better, less damaging and less costly remedies, mammography may be the best way for middle-aged women to avoid the debilitating and lethal effects of late-stage disease. And for society to avoid the costs of that condition and its treatments, which are huge.

—-

post shortened 12/18/12

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Reading About Thinking (on D. Kahneman’s Ideas on Perceptions of Knowledge)

An article appeared in yesterday’s NYT Magazine on the hazards of over-confidence. The Israeli-born psychologist (and epistemologist, I’d dare say), Nobel laureate and author Daniel Kahneman considers how people make decisions based on bits of information that don’t provide an adequate representation of the subject at hand. He recounts how poorly, and firmly, army officers evaluate new recruits’ leadership potential and how brash, rash or naive traders maintain investors’ trust while weighing stocks to buy or sell.

The point, as I understand it, is that individuals, including influential and powerful people, routinely make recommendations without having adequate knowledge to support their decisions. And they do so comfortably.

Men are afflicted by overconfidence more than women, he suggests, although I’m not sure he’s right on this point. In the article, he uses reckless investors who rack up stock losses as an example: Guys are more likely to lose lots of money than are women who, in general, are more cautious in their investments and, perhaps, less confident about their predictions.

I’ll have to read Kahneman’s forthcoming book, Thinking Fast and Slow, to learn more about his views on differences between men and women’s cognitive biases.

Nearing the end of the magazine piece, Kahneman alludes to medical decisions. He suggests that some doctors, perhaps through life-and-death sorts of feedback on the outcomes, may be distinguished by their capacity to gauge their own judgment skills.

He writes:

We often interact with professionals who exercise their judgment with evident confidence, sometimes priding themselves on the power of their intuition…

And asks:

How do we distinguish the justified confidence of experts from the sincere overconfidence of professionals who do not know they are out of their depth? We can believe an expert who admits uncertainty but cannot take expressions of high confidence at face value…people come up with coherent stories and confident predictions even when they know little or nothing. Overconfidence arises because people are often blind to their own blindness.

And broaches the topic of doctors’ expertise:

True intuitive expertise is learned from prolonged experience with good feedback on mistakes. You are probably an expert in guessing your spouse’s mood from one word on the telephone…true legends of instant diagnoses are common among physicians….Anesthesiologists have a better chance to develop intuitions than radiologists do….

I read this article on the train last evening and found it fascinating, so much so I hope I can find time to read the full book. Even though Kahneman is just a single human, and necessarily biased like the rest of us, he’s got some interesting and well-articulated ideas. I’m curious, in particular, if he’ll further dissect the critical thinking pathways among different doctor types.

In my experience, we’re a variable bunch. But who knows?

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Note to Government: Please Don’t Pull Back on Patient Safety Regulations

A few days ago I had a colonoscopy to evaluate some gastrointestinal problems. Subjective summary: Yuck. Downing 3 liters of Nu-Litely, a hyper-osmotic colonic cocktail prep, does not make for a pleasant Sunday afternoon, evening or night. As for the procedure itself, I don’t know how Katie Couric did it on TV.

But what made the procedure tolerable, and non-scary, and worthwhile, was that it was done by a careful, experienced gastroenterologist in a well-run facility. The outpatient unit where I had my colonoscopy employs reputable anesthesiologists and maintains functional, appropriate monitoring instruments and, should they be needed, life-saving equipment.

Why I mention this recent ickiness is this –

This morning’s paper reports that the U.S. administration plans cuts in hospital regulations:

… after concluding that the standards were obsolete or overly burdensome to the industry.

Kathleen Sebelius, the secretary of health and human services, said the proposed changes, which would apply to more than 6,000 hospitals, would save providers nearly $1.1 billion a year without creating any “consequential risks for patients.”

A few aspects of the proposed regulatory pull-back seem reasonable, like allowing hospitals to delegate more work to nurse-practitioners. But some of this regulatory reversal sounds dangerous:

…Other proposals would eliminate requirements for hospitals to keep detailed logs of infection control problems…

…Federal officials would also eliminate a detailed list of emergency equipment that must be available in the operating rooms of outpatient surgery centers. Such clinics would have leeway to decide what equipment was needed for the procedures they performed.

Fortunately, the administration is accepting public comments on this matter for 60 days. But they could make it easier. Instructions from the HHS press release involve a series of links:

To view the proposed and final rules, please visit: www.ofr.gov/inspection.aspx…Both proposals invite the public, including doctors, hospitals, patient advocates, and other stakeholders, to comment.  To submit a comment, visit www.regulations.gov, enter the ID number CMS-9070-P or CMS-3244-P, and click on “Submit a Comment.”

My position is that any lessening of infection control is a disservice to patients. As for monitoring of outpatient facilities where procedures are performed, it’s crucial; patients rely on maintenance of modern, clean and functional equipment in places where they receive medical care.

My bottom line: Patient safety should take precedence over cost-saving measures by the inspectors and the inspected.

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3 Differences between Prostate and Breast Cancer Screening

Days ago, the USPSTF issued a new draft for its recommendations on routine PSA measurements in asymptomatic men. The panel’s report is published in the Annals of Internal Medicine. The main findings are two: first, the absence of evidence that routine PSA testing prolongs men’s lives, and second, that PSA evaluation may, on balance, cause more harm than good.

Not surprisingly, there’s been considerable coverage of this by the media, and some controversy. For decades, many men have had their PSA checked, knowingly or not, by their physicians. The PSA test  measures the level of Prostate Specific Antigen, a protein produced and sometimes secreted by prostate cells, normal, inflamed or malignant, into the bloodstream.

As an oncologist, I don’t find the panel’s recommendations surprising. There’s never been strong data to support the hypothesis that routine PSA testing reduces mortality for men in any age group. Prostate cancer is often indolent, a slow-growing kind of tumor for which a “watch and wait” approach may be best, especially when it occurs in elderly men who are most likely, even in the absence of treatment, to die of another cause. The complication rate of prostate surgery is fairly high, although this “cost” of screening likely varies, depending on the skill of the surgeon. Still, and understandably, there are men who swear by this measurement, whose lives have been, in some cases, saved by early detection of a high-grade tumor upon screening.

For today, I’d like to consider some key differences between breast and prostate cancers, and the potential value of screening:

1. Breast cancer tends to affect younger patients than prostate cancer.

Based on SEER data, the median age of a breast cancer diagnosis in the U.S. is 61 years. The median age of death from breast cancer is 68 years. For prostate cancer, the SEER data show a median age of 67 years at diagnosis, and for death from prostate cancer, 80 years.

So the potential number of life-years saved by early detection and intervention is, on average, greater for breast cancer than for prostate cancer.

2. Screening for breast cancer has improved over the past 25 years.

Because the blood test for PSA hasn’t changed much in decades, it’s reasonable to consider studies and long-term survival curves based on data going back to the 1980s.

Mammography, by contrast, is much safer and better than it was 25 years ago, for various reasons: increased regulation of mammography facilities (more care with the procedure, better training and credentialing of technicians) according to the FDA’s Mammography Quality Standard Acts Program ; development of ultrasound methods to supplement mammograms in case of suspicious lesions (lessens the false positive rate overall); the advent of digital technology (lessens the false positive rate in younger women and others with dense breasts); more breast radiology specialists (expertise).

The data reviewed by the USPSTF in issuing their 2009 recommendations for BC screening were decades old, and, as I’ve considered previously, irrelevant to modern medical practices. A recent article in the NEJM points to the problem of the panel’s reliance on the Age trial for women in their 40s. That trial involved the obsolete method of single-view mammography.

3. Mammography involves a woman’s consent (in the absence of dementia – a separate ethical issue).

A woman knows if she’s getting a mammogram. She may not ask sufficient questions of her doctor, or her doctor may not answer them well, but in the end she does or doesn’t enter into a radiology room, volitionally. She decides to get screened, or not. She can choose to have a mammogram every year, or every other year, or not at all.

There’s no ethical problem, as reported for some men, of patients learning they have an abnormal PSA, after blood was drawn indiscriminately, without their knowing the test was being performed.

This perspective might, and should, later extend to consider additional differences between these two kinds of malignancies (each of which is really a group of cancer subtypes), a fuller discussion of the impact of treatment on survival for each type, and the relative risks of screening due to differential complication rates of biopsies and other procedures.

To be clear, there’s no perfect screening test for either cancer type. Far from it. But the merits and risks of each procedure should be weighed separately, and with care.

All for today.

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What Is a Cancer Metastasis?

A metastasis refers to a lump of cancer cells that’s physically separated from the original tumor. A metastasis can be local, like when colon cancer spreads to a nearby lymph node in the gut, or distant, as when lung cancer cells generate tumors in the adrenal gland, liver, bone or brain.

Sometimes metastases cause serious damage in the organs where they’ve settled. For instance, brain “mets” can result in impaired thinking, personality changes, blindness or seizures. Liver metastases, if large enough, can result in hepatic (liver) failure. Bone mets can lead to anemia and other blood cell deficiencies if the marrow becomes filled with malignant cells instead of normal ones.

A common source of confusion is that when cancer moves from one body part to another, it’s still referred to by its site of origin.  For example, if breast cancer spreads to the liver or bone, it is still called breast cancer and most often treated as such. In general it’s the type of malignant cell, rather than the affected organ, that guides therapy.

Notes on usage: The plural is “metastases.” When someone has metastatic disease, that means their cancer has spread from the primary site to another. Oncologists don’t usually apply these terms to leukemia or lymphoma.

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More on DCIS

More, a magazine “for women of style & substance,” has an unusually thorough, now-available article by Nancy F. Smith in its September issue on A Breast Cancer You May Not Need to Treat.

Ductal Carcinoma in Situ (DCIS) in the breast, histopathology w/ hematoxylin & eosin stain, Wiki-Commons image

The article’s subject is DCIS (Ductal Carcinoma in Situ). This non-invasive, “Stage O” malignancy of the breast has shot up in reported incidence over the past two decades. It’s one of the so-called slow-growing tumors detected by mammography; a woman can have DCIS without a mass or invasive breast cancer.

While some people with this diagnosis choose to have surgery, radiation or hormonal treatments, others opt for a watchful waiting strategy. The article quotes several physicians, including oncologists, who consider the surveillance approach favorably and otherwise.

In 2009 the NCI sponsored a conference on diagnosis and management of DCIS. The participants issued a helpful, albeit technical, consensus statement.

The bottom line is that optimal treatment for DCIS remains uncertain because doctors don’t yet know the natural course of this early-stage breast malignancy. The ClinicalTrials.gov website lists active and ongoing studies.

 

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A Life-Changing Day

Today marks 9 years, exactly, since Dr. L. gave me the Call.

It was a Wednesday afternoon. I was in clinic, caring for patients with blood diseases. In between seeing my patients and supervising the residents and fellows, I checked my voice mail. The message from Dr. L. said I should please contact her. Already, by the tone of her voice, I knew the results of the needle biopsy I’d had the morning before. It was positive. I had an infiltrating ductal carcinoma in the left breast.

I stayed to finish seeing the patients. Around 6PM, I went back to my office to complete notes and return calls. Only after all that was done, my desk set with a decipherable stack of tasks and charts – just in case someone else should need to complete my work, I went home.

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Two Faces of Pancreatic Cancer

Early this week I was saddened to hear of a former colleague’s death from pancreatic cancer. Dr. Ralph Steinman, a physician-researcher at the Rockefeller University, received a Nobel Prize for his work on the innate immune system. For many, news of Ralph’s death at 68 years arrived synchronously with word of his award.

Yesterday we learned that Steve Jobs, Apple creator and leader, died at 56 years from a neuroendocrine tumor of the pancreas. The tech-based, Twitter-type tributes reveal the breadth of this man’s influence on our world.

These two men faced completely different forms of cancer in the pancreas. This news underscores the importance of pathology in cancer diagnosis and treatment. For a patient to make an informed treatment decision, which might be to decline treatment, a patient needs to know what kind of cancer they have, what is the prognosis, and how might therapy change the course of the particular illness.

Jobs had a neu­roen­docrine tumor. According to the NCI, islet cell tumors of the pan­creas are quite rare, with esti­mates of between 200 and 1000 new cases per year. These can be dis­tin­guished from other cancers by special stains and mol­e­cular tests. Just months ago, the FDA approved two new drugs for treatment of neuroendocrine tumors of the pancreas: Afinitor (Everolimus) and Sutent (Sunitinib).

This kind of cancer can arise in almost any body part, but it’s most commonly found in endocrine (hormone-secreting) organs. In the pancreas, it can develop from islet cells that manufacture hormones such as insulin. Symptoms may occur if the tumors secrete active hormones, with effects elsewhere in the body, or if they cause pain by expanding and pressing on nearby nerves, vessels or ducts. These tumors tend to grow slowly and the prognosis is relatively good; doctors may advise some patients to hold off on treatment until symptoms occur.

The usual form of pancreatic cancer is of the exocrine cells, those that produce and secrete digestive enzymes into the bile duct and small intestine. According to the American Cancer Society, there are over 44,000 new cases of pan­creatic cancer yearly in the U.S. It tends to occur in the elderly and is slightly more common in men. Cig­a­rette smoking is one of the few certain dis­posing factors; the causes are largely unknown. The prognosis for this kind of pancreatic disease remains poor, on average. Standard treatments, according to the NCI, include surgery, radiation, chemotherapy and palliative care.

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