More on Mammography, Breast Cancer, Misleading Arguments, Emotion and Women’s Health

It’s a holiday week. But when this morning’s paper delivered yet another op-ed by Dr. H. Gilbert Welch, citing (and breaking an embargo on) yet another, misleading and manipulative two-author analysis of breast cancer screening by him and one other scientist, I thought it worth documenting some concerns.

I’ll start by mentioning that Dr. Welch and I seem to agree on one point – that women should have access to information so they might make reasoned decisions about breast cancer screening. He refers, also, to controversy among professionals about the relative benefits and harms of screening mammography. That there is debate is incontrovertible. No argument there.

The problem is that educated, middle-aged women are being nudged, and frightened, or even charmed into not going for mammography. Nudged, by papers like the one in JAMA today, which acknowledges controversy about statistics and then suggests a falsely low range for lives saved per number of women who get screened. Frightened, by headlines that highlight the risks of overdiagnosis, a statistical concept. If a woman finds out she has an early-stage breast tumor, she and her doctor can (and should) actively decide how much therapy she should have based on the molecular subtype of her tumor, stage and other factors. Just because you find a Stage 0 or small tumor by screening, doesn’t mean you have to over-treat it. If medical education were what it should be, there would be little or no overtreatment because doctors would discuss appropriate options with women and not advise them to have too much therapy. And charmed, yes – by the false notion that breast cancer is often nothing to worry about, that in many cases it can be let alone. That it might just disappear.

I am not aware of a single pathology-documented, published case of a breast tumor going away on its own. Yes, there are slow-growing tumors that may not do harm. But those tend to occur in older women. Those cases are, in general, irrelevant to discussions of breast cancer screening in women between the ages of 40 and 60 or so. What matters most in assessing screening benefits is the number of life-years saved, which is potentially huge for women in this age bracket, and quality of life changes due to the intervention, as assessed over decades.

Mammography (Wikimedia image)

Mammography (Wikimedia image)

For today, I’ll point to just a few issues in the JAMA paper. The authors state that among 1000 U.S. women age 50 years who are screened annually for a decade, “490 to 670 will have 1 false alarm.” But as detailed in Table 2 of their paper, it turns out the range for women who undergo false-positive biopsies is far lower: between approximately 50 and 100 per thousand women, depending on the age group and study from which the authors draw the “data.” What that means, according to the numbers they’ve culled from studies of non-specialized radiologists, is that only 1 in 10 women would undergo a breast biopsy, and not have cancer, per decade of screening. So the numbers of false positives involving biopsy are not so high.

Most of the false positives are callbacks for additional imaging. Welch and his colleague talk about frequency and anxiety produced by “false alarms.” They go as far as to cite studies documenting that “anxiety may persist for at least 3 years and produce psychological morbidity…” But if women appreciated the data to support that, in most cases – approximately 85 percent – breast cancer can be removed and metastatic disease avoided, over the long haul, by early detection, most of us, and certain anyone making decisions based on reason, wouldn’t mind the follow-up and worrying about irregularities noted on a screening test. Most of us can handle the emotional aspects, and uncertainty, of screening over the course of a few days. To suggest otherwise is patronizing.

Years ago, breast cancer screening was widely considered an act of empowerment, a way for women to take control of their bodies, and to avoid the disfiguring and sadly lethal effects of late-stage breast cancer, besides the potential need for treatment until the end of life. Now, mammography is more accurate and involves less radiation than ever before. Women might be demanding universal access to better, state-of-the-art facilities, rather than shying away from the test.

As for those women who do get called for needle breast biopsies, I say that’s not such an onerous prospect. What’s key is that the procedure be done under local anesthesia, under imaging (typically ultrasound) guidance in an office by a skilled radiologist. The sample should be reviewed by a well-trained breast pathologist, and molecular studies evaluated in a central lab that routinely runs those kinds of tests.

Finally, in the end of today’s op-ed, Welch suggests that the way to reduce uncertainties about breast cancer screening is to carry out costly and somehow randomized clinical trials to see how much and how often screening is needed to demonstrate a survival benefit. But, as his tone suggests, I suspect he doesn’t really favor investment in those clinical trials.

The fact is, I don’t either, at least not for mammography at this point in the U.S.  As I and others have pointed out, it takes 15 – 20 years of follow-up in a trial to demonstrate that screening and early detection reduce breast cancer deaths. In North America, the availability of mammography correlates with a reduction in mortality from breast cancer by over a third. He and others have attributed improvements in survival to better treatments. I and others would suggest that while therapy has improved quite a bit since 1985, the greatest benefit derives from most women avoiding the need for life-long treatment by having small tumors found and removed before they’ve spread. This applies in over 80 percent of invasive cases. The survival boost is from the combination, with early detection playing a significant (large) role in the equation.

Why I don’t support starting new randomized trials for mammography, besides that they’d be costly and hard to carry out, is that we can’t wait 20 years to know how best and often to screen women. Rather, it would be better to spend those theoretical research dollars in finding how to prevent the disease. If in 20 years breast cancer is less common, as we all hope will be the case, and true positives are rare, screening of the population won’t be needed. (If breast cancer rates do climb, Bayes’ theorem would support screening, because the positive predictive value of the test would, unfortunately, be higher.) Either way, by 2034 the technology would have improved, or we might have a valid alternative to mammography for screening, and so the studies would be, again, out of date.

It would be better to spend what resources we invest in mammography on improving the quality of screening facilities, now, so that women who decide to go for the procedure can, at least, know that it’s being performed with modern equipment and by doctors and technicians who are capable of state-of-the-art procedures involving the lowest level of radiation exposure possible, careful reading of the images, and application of sonography to further examine the appearance of women with dense breasts, when needed.

All for now.

I wish all my readers a happy and healthy 2014,

ES

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Why I Like the (Absurd) Dancing in the OR Video

Last Thursday I was struck by a video of a woman dancing in the O.R. The Huffington Post lifestyle editor called it awesome. “Deb’s Flash Mob” lasts 6 minutes and 14 seconds. The scene takes place in an ordinary-appearing operating room. The song, Get Me Bodied, by Beyoncé, beats familiarly, throughout. And flash mobs, well, they’ve happened in all kinds of places.

What I’d never seen before – what’s news – is a furiously lively woman dancing with doctors, nurses and other others in the operating suite where she would soon undergo a bilateral mastectomy. She, the patient, is shaking and grooving. She’s clad in two hospital gowns, one flipped backwards (for modesty; a trick those of us who’ve been there know), a cap and hospital ID bracelets. An IV part dangles from the crook of one arm. Despite the circumstances, it looks like Deb’s having fun, smiling and, in the end – as her surgery nears, she’s thanking and hugging people who appear to be her friends, dressed in scrubs and adorned with health care accessories like stethoscopes.

Deb’s OR Flash Mob

As of this post, Deb’s OR Flash Mob has been viewed over 6.3 million times on YouTube. Not everyone, including a breast cancer patient and blogger I respect, loved the clip. (And I must admit it gets a bit long; at 3 minutes in, I was ready to concentrate, again, on what I’d been writing.) There are a hundred things wrong with this video, not the least of which is that if every patient were to ask for a dance party before surgery, the hospitals would lose money and (more importantly) precious operating room time. It’s a completely unreasonable, and, maybe, selfish thing to do.

But the dance party is humanizing. I’d go so far as to suggest it adds value to the Deb’s health care experience, and, remotely, might make a good outcome more likely. Why’s that? Because if the nurses and doctors, including the anesthesiologists who take care of the patient during surgery are reminded of her personality – her spirit, or spark, or whatever you want to call it – before they start monitoring and cutting, they are more likely to pay attention, to take care of her body, of which she’s relinquished control, than if they simply perceive her as a physical human container of a tumor with flesh, bones, a beating heart, lungs and other organs.

It turns out the patient is a physician, Dr. Deborah Cohan. She’s an obstetrician and AIDS researcher at UCSF. I can only infer that her position was a factor in the medical center’s indulging her request for a dance party before her mastectomy. On a Caring Bridge site, she offers few details of her circumstances. What all of us who’ve been there, after that kind of surgery, know is that the recovery isn’t always easy. Drains and all that. The dance party was a week ago tomorrow, early in the morning before the bilateral mastectomies. I hope that the patient is recovering well.

What Deb did, and I thank her for this, is offer an extreme example of patient-centered care. Among other things, she did everything possible to assure that the people caring for her perceive her as a human being who dances and enjoys music.

In reality, many and probably most breast cancer (and other) patients can barely get their legitimate questions answered about their surgery or treatment options, or have sufficient time with doctors to discuss those thoroughly. If only every doctor would “see” each patient as a vibrant human, that might help. Each of us deserves a dance party equivalent, or at least a good conversation and attention from the people we trust with our medical care.

#whyIlikedit

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A Case for Slower Medicine

A few days ago I met Katy Butler, author of Knocking on Heaven’s Door. Her revealing book about her elderly father’s slow death and her mother’s reaction to that – by learning to question doctors and, ultimately, choosing “less” – is a cautionary tale of too much medicine. The prose is elegant, and daughter’s point of view, graspable.Knocking on Heaven's Door

What emerges, through Butler’s voice about her parents’ ordeal, is anger. She tells of the pacemaker that was placed in her father’s heart. It kept him alive through multiple strokes and progressive debility. Her father’s protracted illness became a burden to her aging mother, who cared for her husband through thick and thin. Butler minds the costs of the procedure and doctors who, with seemingly little contemplation, inserted the device and billed for it. When her mother, in her eighties, became weak with heart valve problems, she opted not to have surgery. That was a triumph, Butler suggests – that her mother didn’t let the doctors take her heart, too.

And so she writes. There’s value in this intensely personal story. Because every day in hospitals patients receive treatments they don’t want, that they wouldn’t have selected if they had understood in advance what the consequences would or could be. Too many people, especially the elderly, die after they’ve had futile, intensive or just plainly aggressive care. Butler points to the pitfalls of a system that pays doctors to do procedures rather than to communicate.

Anger is an understandable reaction to a system that dehumanizes us (patients), that treats human bodies as containers of billable ailments and broken parts. I get that. But most of the many doctors I know go about their daily work with good intention – to heal. Plus, there’s a danger of underselling, or not choosing, care that could extend life, with good quality, for years or decades.

It’s not easy to reconcile the positions of over-treated patients and over-worked doctors. Some say the answer is in better medical education, in programs like narrative medicine, in patients’ gaining knowledge and asking more questions, or in revamping doctors’ payment incentives. I don’t see an easy solution from the doctors’ side, except for what’s obvious:  practicing physicians need time to think, to contemplate the purpose of what they’re advising in each patient’s case. They should be paid for intellectual and communicative (non-PR) efforts. And they should learn, or be given enough minutes in each visit assigned, to hear, listen and respond to patients’ concerns.

The author of Knocking on Heaven’s Door, Katy Butler, mentioned that she’s eager to give grand rounds, to speak before doctors including cardiologists. She’d love to tell and teach them, and us, a thing or two.

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Seeing ZocDoc, And Listening To A Panel On Improving Health Care

A few evenings ago, I visited ZocDoc. The youthful company, seemingly approaching middle age among startups that began in 2007, looks to be thriving. ZocDoc keeps its headquarter downtown in a loft-like, mainly open, SoHo space replete with a ping-pong table, open kitchen and mock street signs pointing (abstractly) to concepts like “Make Work Fun” and “Patients First.” The vibe amongst the crowd – a hundred or so by my crude estimate: a mix of doctors and entrepreneurs, a few journalists, insurance executives and investors, along with some ZocDoc employees – was strictly positive.

According to its website*, ZocDoc is:

… a free service that allows patients to find a nearby doctor or dentist who accepts their insurance, see their real-time availability, and instantly book an appointment via ZocDoc.com or ZocDoc’s free apps for iPhone or Android.

Basically it’s a small-but-not-tiny, growing health IT company that provides an on-line way, like an app, for people to find doctors who accept their insurance and have available time slots. (Think of OpenTable, but for health care?) Since 2007, ZocDoc has expanded. The company, with some 450 employees, claims over 2.5 million users monthly in over 1,800 cities.* Its business model includes that doctors, dentists and possibly other provider-types, pay an annual fee to participate ($300 per month, an employee told me). Since it started, ZocDoc has received significant press and gained prominent investors like Goldman Sachs and Jeff Bezos. It’s won awards as a top-notch place to work. Kudos!

The main event was a panel discussion of a dry-sounding subject:  “Improving Healthcare: The Public and Private Sectors’ Shared Responsibility.” ZocDoc’s founder Chief Operating Officer, Dr. Oliver Kharraz, introduced a formidable panel of speakers, in this order: Senator Tom Daschle, Dr. Brad Weinberg, of Blueprint Health, Senator and Dr. Bill Frist, Rich Fernandez, of the Boston-based Steward Medical Group and Dr. Amanda Parsons, of the NYC Dept. of Health and Mental Hygiene.

Dr. Kharraz opened with a question on how technology and medical startups, like ZocDoc, will fare in the context of Obamacare and upcoming, uncertain changes in the health care landscape. Daschle was first to answer, and he did so by congratulating the company for its talent and the passion it brings to a turbulent, transformative health care environment. A fit-looking Frist, a former heart surgeon, spoke enthusiastically on opportunities in the private sector. Other panelists chimed in, with words like “value,” “exciting,” “risk,” “entrepreneurial,” “wellness” and “opportunity.”

No word cloud is needed; we were in one. And it’s hard not to be charmed by the brightness of enthusiastic and eager tech-folks who want to make it easier for people to get to doctors they might need. In theory. The ZocDoc space bore no semblance to any hospital or office where I’ve been a doctor or a patient.

At the end of the discussion, one of the panelists noted the group’s apparent agreement on the terrific-ness of the enterprise. Rather than opening the session up to questions from the audience, we were invited to mingle and ask questions of the speakers. If I’d had the chance, I’d have asked a few:

1. Does ZocDoc help people get well, or is it simply a web-based system for procuring appointments with doctors who sign on?

2. What does ZocDoc offer that another health IT program, or portal, can’t or couldn’t provide?

3. How does ZocDoc help patients who don’t have insurance? (OK, it doesn’t; but that’s not the company’s aim)

4. Sure, ZocDoc has value. It helps a small fraction of the population who might be traveling and for one reason or another need to make a doctor’s appointment without having time to ask around or call in, or prefer to just click for an appointment (as I do for groceries), but…Does ZocDoc improve the quality of health care received?

5. How do you reconcile the money being invested in start-ups like these, which make health care “easier” for a few, with the lack of resources faced by real, nearby NYC hospitals closing?

Keep in mind, my concerns are based in my enthusiasm for technology in health care, and for giving providers, aka doctors, a “shot in the arm” of modern-ness. Enter the 21st Century…But there’s no hands-on a patient, no real medicine here. It’s too clean. I’m not convinced the value’s true.

*all links accessed 9/19/13

addendum, 9/20: a ZocDoc representative has informed me by email that the fee for providers is based on an annual contract priced at about $300/month, and so I have adjusted the post accordingly. (I’d originally stated that the fee was approximately $300 per year, based on my recollection of what an employee told me during the event.) – ES

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Good News from SCOTUS on Gene Patents, But Questions Remain

Today the U.S. Supreme Court issued a unanimous decision on the Myriad Patent case, having to do with the company’s ownership of BRCA-1 and BRCA-2 gene sequences. The main opinion, authored by Justice Thomas, says this:

“A naturally occurring DNA segment is a product of nature and not patent eligible merely because it has been isolated, but cDNA is patent eligible because it is not naturally occurring.

At first glance, this is terrific news for patients world-wide. It means is that no company, university, other entity or individual can patent human genes.

Keep in mind – the case doesn’t just apply to BRCA and evaluating a person’s risk for breast and ovarian cancers. Rather, there are hundreds of human genes implicated in cancer that are potential targets for treatment, that might be evaluated, and thousands linked to other diseases. The decision continues:

“Myriad did not create or alter either the genetic information encoded in the BCRA1 and BCRA2 genes or the genetic structure of the DNA. It found an important and useful gene, but groundbreaking, innovative, or even brilliant discovery does not by itself satisfy the… <patent law>

West façade of U.S. Supreme Court Building. (Franz Jantzen)

West façade, U.S. Supreme Court (Franz Jantzen), gov’t image

What’s clear is that gene sequences, as they occur in human cells, can’t be owned just because they’re found, no matter how important they are. This circumstance should allow other researchers and firms to create cDNA from the natural sequences to develop new (competing and potentially less costly) assays and, even better – do their own work – tantamount to providing “second” and “third” opinions (etc. & n.b. IMO more is better!) research to understand how the genes lead cause disease in some people and might targeted for therapy. Great –

But the decision suggests that many lab-generated complementary DNA (cDNA) strands remain patentable, or up for grabs once created – which may be the reason some biotech stocks have rising values today. I’m neither a lawyer nor an analyst, but I do know from my experience as a researcher that it’s essentially trivial to generate cDNA from a short DNA segment, potentially with a mutation of interest. So how might the cDNA be patented, if anyone who has access to the original genetic sequence might form the cDNA by routine lab methods?

Near the end of the opinion, the justice writes:

“…but the lab technician unquestionably creates something new when cDNA is made. cDNA retains the naturally occurring exons of DNA, but it is distinct from the DNA from which it was derived. As a result, cDNA is not a ‘product of nature’ and is patent eligible under <patent law §101>, except insofar as very short series of DNA may have no intervening introns to remove when creating cDNA. In that situation, a short strand of cDNA may be indistinguishable from natural DNA.

The document clarifies the cDNA issue just slightly:

“It is important to note what is not implicated by this decision. First, there are no method claims before this Court… the processes used by Myriad to isolate DNA were well understood by geneticists at the time of Myriad’s patents ‘were well understood, widely used, and fairly uniform insofar as any scientist engaged in the search for a gene would likely have utilized a similar approach’…

Nor do we consider the patentability of DNA in which the order of the naturally occurring nucleotides has been altered. Scientific alteration of the genetic code presents a different inquiry, and we express no opinion about the application of <patent law §101> to such endeavors.

How I interpret this is that if a researcher generates a short cDNA segment based on a gene, that’s not patentable, but if it’s a long strand involving lots of clipped introns, that might be patentable.

Taking in all this, which is far from simple, I have a question and a wider point:

What goes unaddressed by the justices is the patentability of cDNA based on common genetic variants in cancer. Those are “naturally occurring” mutations, inasmuch as they arise in humans. But the cDNA generated from those sequences might remain patentable. There are loads of examples in this regard: Consider, for example, the genetic mutations in EGFR, and ALK, that are used in lung cancer diagnosis, treatment decisions and development of new targeted drugs. In the current issue of the New England Journal of Medicine, doctors report on SALL4, a gene that occurs in some liver cancers and might be a good, useful target for therapy in that disease.

The point is that the Supremes – and those would be lawyers – need to know about biology. Justice Scalia, sadly in my view, wrote his own opinion not because he disagreed with the others, but because he felt there was too much science in the decision. From the Scotus Blog today:

“Many readers no doubt will share the view of Justice Antonin Scalia, in a short, separate opinion refusing to join in a section “going into the fine details of molecular biology,” of which he said he had neither knowledge nor belief.  Scalia said he did understand enough …

This scares me, that one of the Justices, our most accomplished lawyers who might make decisions on cloning, and stem cells and who knows what in the future, copped out because he lacks science education – what should be required high school biology in  U.S. schools, public and private – to form an opinion that matters so much.

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On Friends Affected by Cancer, and Environment Oncology

Dear Readers,

Yesterday I learned that a woman I know slightly, a journalist, has Stage 4 lung cancer. Debra Sherman is a reporter for Reuters and began a blog, Cancer in Context.  It’s a moving start of what I hope is a long journey.

What struck me is how Debra describes crossing a line, a bit the way I felt when I found out I had breast cancer. She writes:

I have been writing about medical technology and healthcare for more than a decade. I’ve covered the major medical meetings, including the big one on cancer. I’ve written stories about new cancer drugs and treatments…I wrote those stories objectively and never imagined any would ever apply to me.

She’s shifted from what you might call a “straight” reporter to an i-reporter journalist. And although it’s true that Debra may be less objective than some other writers on the subject, she’s already knowledgeable – through her prior work – on many of the relevant terms and issues. Much of what she knows already, vocabulary included, may allow her to make more informed decisions. It’s possible it may enable her to write in a way that helps readers more than ever.

Earth, from space (NASA image, Wiki-commons)

Earth, from space (NASA image, Wiki-commons

I wish her the best with her column, and with her health ahead.

The bigger issue, of which the story reminds me, is that we’re living among too many young and middle-aged people who have cancer. Every day I read or hear of another case among my neighbors, a friend, a blog. Each reminds me of the need for research, better drugs, and greater knowledge of why so many tumor types – including lung cancer in women who haven’t smoked much, and breast cancer in young women – are on the rise.

The ASCO meeting, where believe me I wish I could be but can’t now, offers a bright picture for targeted drugs, genomics, novel immunotherapy and better data access and analyses through a huge new platform called CancerLinQ, All good. Great, really.

In thinking about each new case in my “world” – if I could pick a field for future investigation that might lead to insight on cancer’s causes and, ultimately, reduce the cancer burden 30 and 50 years from now, I might choose the tiny, under-funded area of environmental oncology

That’s a tough field. Most oncologists want to work with patients. Researchers want to publish papers. Cause-and-effect is hard to demonstrate, especially when most of the data is untenable and you’re up against businesses, politics and people who, understandably, don’t recall precisely what they ingested years ago. But to stop cancer from happening so much, that’s where the money is. IMO, nothing more.

All for this week,

ES

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Questions for ASCO – on Tamoxifen, ATLAS and aTTom

On Sunday in Chicago, oncologists and others at the plenary session of the annual ASCO meeting will be talking about an abstract that matters a lot to women with breast cancer. It’s a study on Tamoxifen that bears on how long women with estrogen-receptor positive (ER+) tumors should take adjuvant hormonal therapy after initial treatment for early-stage BC.

tamoxifen binding an ER receptor (Wikimedia Commons)

tamoxifen binding an ER receptor (Wiki-Commons)

Why this matters so much is that ER+ tumors account for most BC cases. So if you’re a pre-menopausal woman who’s had a tumor removed by surgery, there’s a good chance your doctor will recommend adjuvant (“extra”) treatment with Tamoxifen for 5 or (probably) 10 years. The reasoning behind this recommendation is that the recently-published ATLAS study demonstrated a clear lengthening of life among women with ER+ tumors who took the longer course.

The usual dose of Tamoxifen (Nolvadex) is 20 milligrams per day. The bargain-rate cost is around $9 for a month’s supply GoodRx.com  – so we’re talking just over $110/year x 5 or 10 years. That’s small change as oncology drugs go, although the numbers add up over so many patients affected…

Tamoxifen carries a small but real risk for what most doctors consider side effects, like blood clots and occasional, typically low-grade uterine cancers. The problem with Tamoxifen – which is not so much a risk as a definite consequence of taking this medication – is that it has anti-estrogen effects that many young (and older) women consider undesirable. Already our breasts have been cut. Feeling “feminine” is not trivial. Many don’t want it!

(Mental exercise: imagine hundreds of thousands of men ages 35-55 agreeably accepting a prescription for partial chemical castration to reduce the chances of a tumor recurring, after they’ve already had significant treatment to reduce those odds)

Your author has been in rooms filled with doctors where the overwhelming consensus expressed was that hormonal treatments in women with BC are terrific. Indeed, they extend life and, in some cases – such as those with low Oncotype scores – afford women the option of skipping chemo. But how are they so sure we’d rather take an anti-estrogen for 5-10 years rather than 3-6 months of chemo? Answer: I don’t think anyone knows.

One limitation of the ATLAS study (and as best I can tell the same for aTTom) is that the trial doesn’t distinguish between women who got adjuvant chemo and those who didn’t get chemo. So it’s unclear whether Tamoxifen helps prevent recurrence, or extend life, in women who’ve also received chemotherapy for the disease.

Here are 2 questions for aTTom:

1. How do we know that women with small, node-negative (low risk) tumors who receive chemotherapy, as is standard in many communities, get additional benefit from Tamoxifen after chemo?

2. Should pre-menopausal women with small, ER+ tumors be given a choice between taking chemo or Tamoxifen?

In other words, is there evidence to support the combination – chemo followed by hormonal Rx – as the standard, adjuvant care for women with early-stage, ER+ tumors? or that women prefer hormonal pills over a short course, like 4 cycles, of chemo?

I’m eager to hear about the updated aTTom (adjuvant Tamoxifen Treatment offers more?) findings, to be published and presented on Sunday. I hope my colleagues – doctors, patients, advocates and journalists will ask good questions!

All for now,

ES

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Should People With Health Problems Talk About their Conditions?

Before I became a journalist, I rarely talked about my medical problems. When I was working at the hospital I tried not to mention, or show, the pain I was experiencing in my back to colleagues or even friends. Eventually I had to tell a higher-up about it, because I didn’t take narcotics and the pain became limiting. Rounding was difficult. I needed a chair.

And so I was struck by an essay in today’s Times by a woman who has dystonia, a neurological condition. She writes:

Long after “coming out” to my friends about my diagnosis, I realize now that what’s most important is telling people about the disease. Telling waiters why I’ve brought a special pillow with me to a restaurant; legislative aides who want to know what their bosses can do; and strangers who ask, almost rhetorically, if I am in pain.

The point of the article, as I understand it, is that big-name diseases like cancer get loads of media attention and sympathy from strangers. Relatively few people “get” the suffering of those with rare or less mortifying conditions. This is especially true when there’s no celebrity who speaks, writes, sings or otherwise whines or rails on it. People who don’t feel well want empathy, or at least a bit of consideration.

OK, now I’m going to say what’s hard, and I might regret, but I’m not sure that everyone needs to hear about all of our ailments: Sure, if you’re a writer, you can sort through your medical issues and feel better by expressing yourself, as I sometimes do here, and in principle and occasional reality help others facing similar disorders. And if you’re an employee somewhere and you need to take time off or accommodation for a disability, you may need to talk with your boss about what’s going on.

But do you need explain to the person on the checkout line or, say, a mother organizing a bake sale, why your back hurts? Why you frequent the women’s room? Or why you need a seat on the bus?

I am truly ambivalent about this.

My only way out is to tell you of an error I think I made, in withholding information. After my spine surgery, when I couldn’t sit up without assistance, or raise my arm to brush my teeth, and then eventually was practicing walking with a cane, wearing a brace in warm weather under modest clothing, I deliberately didn’t visit or walk by my place of work. I didn’t want my colleagues to see me looking frail. I wanted to return to work looking strong and standing straight up, as if nothing were wrong inside.

Already I’d had the cancer treatment – surgery and chemo – and they knew about that, although we didn’t speak of it much. Mainly it was women coworkers who visited me when I was hospitalized. That is understandable. Most of my colleagues didn’t know about my back. Not really. A lot of people have back pain, after all. What’s the difference, scoliosis, fusion, a revision, a clot, whatever…Or about my other conditions. It was TMI.

Over time I was becoming a burden to the group and – astonishingly in retrospect, I felt badly about that. I worked harder than most, to compensate for my disability (which I had trouble acknowledging, internally), and that further damaged my health. I sometimes wonder, now, if I had told my colleagues earlier, and let my non-cancerous conditions “show,” would I still be practicing medicine today?

Maybe.

Not everyone wants to hear about it. Or know. Besides, plenty of people have stuff they don’t mention –

“Everything is copy,” is a phrase Nora Ephron learned from her mother. That’s according to her son, Jacob Bernstein, who  detailed some of her final days in the New York Times Magazine. But Ephron kept quite a bit to herself. She was a sharp and successful lady.

Thoughts?

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Don’t Judge Her! An Essay on Angelina Jolie, BRCA, Cancer Risk and Informed Decision-Making

Angelina Jolie at Cannes in 2011 (Wikimedia Commons, attribution: Georges Biard)

Angelina Jolie at Cannes in 2011 (Wikimedia Commons, attribution: Georges Biard)

Before this morning, I never wondered what it’s like to walk in Angelina Jolie’s shoes. Like many, I woke up to the news – presented in the form of an op-ed in the NYTimes – that one of the world’s most beautiful and famous women recently had bilateral mastectomies to reduce her risk of developing breast cancer.

It turns out the 37 year old actress carries a BRCA1 mutation, a genetic variant that dramatically ups her risk of developing breast and ovarian cancers. Her mother, Marcheline Bertrand, died of cancer at the age of 56 years. Jolie would have been 31 years old when her mother died.

As Jolie tells it, doctors estimated her risk of developing breast cancer to be 87 percent. As she points out, the risk is different in each woman’s case. As an oncologist-journalist-patient reading her narrative, I can’t help but know that each doctor might offer a different approximation of her chances. It’s likely, from all that Jolie has generously shared of her experience and circumstances, that her odds were high.

“Cancer is still a word that strikes fear into people’s hearts, producing a deep sense of powerlessness,” Jolie wrote in today’s paper. To take control of her fate, or at least to mitigate her risk as best she could upon consultation with her doctors, she had genetic testing for BRCA and, more recently, decided to undergo mastectomy.

The decision was hers to make, and it’s a tough one. I don’t know what I’d have done if I were 37 years old, if my mother died of cancer and I had a BRCA mutation. There’s no “correct” answer in my book, although some might be sounder than others –

I know physicians who’ve chosen, as did the celebrity, to have mastectomies upon finding out they carry BRCA mutations. And I’ve known “ordinary” women – moms, homemakers, librarians (that’s figurative, I’m just pulling a stereotype) who’ve elected to keep their breasts and take their chances with close monitoring.  I’ve known some women who have, perhaps rashly, chosen to ignore their risk and do nothing at all. At that opposite extreme, a woman might be so afraid, terrified, of finding cancer that she won’t even go to a doctor for a check-up, no less be tested, examined or screened.

What’s great about this piece, and what’s wrong about it, is that it comes from an individual woman. Whether she’s made the right or wrong decision, neither I nor anyone can say for sure. Jolie’s essay reflects the dilemma of any person making a medical choice based on their circumstances, values, test results and what information they’ve been given or otherwise found and interpreted.

How to conclude? Mainly and first, that I wish Ms. Jolie the best and a speedy recovery after surgery. And to thank you, Angelina, for raising this issue in such a candid fashion.

As for the future, Jolie’s decision demonstrates that we need better (and not just more) research, to understand what causes cancer in people who have BRCA mutations and otherwise. My hope is that future women – children now –needn’t resort to, nor even contemplate, such drastic procedures to avoid a potentially lethal condition as is breast cancer today.

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Dr. Edward Shortliffe, on the History and Future of Biomedical Informatics

Last week I had the opportunity to hear and meet Dr. Edward Shortliffe at the New York Academy of Medicine. He’s a maven in the field of biomedical informatics (that would be the “other” BMI), and a pioneer at that. He mentioned that he began working on an electronic health record (EHR) when he was an undergraduate at Harvard in 1968.

Shortliffe emphasized the multidisciplinary nature of the field – that clinicians and computer science-oriented types need be involved for health information technology (HIT) to be effective. “Human health is at the core of it,” he said. The goal of biomedical informatics isn’t for computers to replace humans, he said, but for doctors to learn how to use it – as a tool – so that we (human doctors) can practice better medicine.

He reviewed the 50-year history of the field. The super-simple summary goes something like this: in the 1960s hospitals developed early information systems; in the 1970s, early decision support and electronic health records (EHRs) emerged at hospitals and large institutions; in the 1980s clinical research trials led to databases involving patients across medical centers; in the 1990s, progress in science (especially genetics) led to modern biomedical informatics. Now, the vast work includes clinical, imaging, biology (molecular, genomic, proteomic data) and public health.

Clinical informatics is the newest field supported by the American Board of Medical Specialties.  The first boards will be offered in October of this year, he mentioned.

If you’re interested in the future of health IT, as I am, you might want to take a glance at a perspective published recently by Dr. Shortcliffe and two coauthors, Putting Health IT on the Path to Success, in JAMA. The authors consider the slow pace of implementing HIT, and suggest that the solution rests with patient-centric Health Record Banks (HRBs):

“…Health record banks are community organizations that put patients in charge of a comprehensive copy of all their personal, private health information, including both medical records and additional data that optionally may be added by the patient. The patient explicitly controls who may access which parts of the information in his or her individual account.

I’d like to see these emerge.

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Finding Kindness and Introspection in ‘Half Empty,’ a Book of Essays by David Rakoff

Regrettably, I found the essayist David Rakoff by his obit. It happened last August. The Canadian-born New Yorker died at age 47 of a malignancy. In a reversal of a life’s expectancy’s, the writer’s death was announced by his mother, according to the New York Times.

I was moved to read one of Rakoff’s books, Half Empty, and in that discovered a man who, I like to think, might have been a friend had I known him. It’s possible our lives did cross, perhaps in a hospital ward when I was a resident or oncology fellow, or in Central Park, or through a mutual friend.

The last essay, “Another Shoe,” is my favorite. Rakoff learns he has a sarcoma, another cancer, near his shoulder – a likely consequence of the radiation he received for Hodgkin’s in 1987. He runs through mental and physical calisthenics to prepare for a possible amputation of his arm. He half-blames himself for choosing the radiation years before: “I am angry that I ever got the radiation for my Hodgkin’s back in 1987, although if it’s anybody’s fault, it is mine,” he wrote. “It had been presented to me as an easier option than chemotherapy.” He reflects on his decision as cowardly and notes, also, that it didn’t work.

He wound up getting chemo anyway, a combination – as any oncologist might tell you, but not in the book –that’s a recipe for a later tumor.  So one take-away from this sort-of funny book, among many, is that how doctors explain treatments and options to patients – the words we use – matter enormously, not just in clinical outcomes, but in how people with cancer feel about the decisions they’ve made, years later.

The other part on words, which I love, is a section on the kinds of things ordinary people – friends, neighbors, relatives, teachers…tell people who have cancer. It appears on pages 216-217 of the paperback edition:

“But here’s the point I want to make about the stuff people say. Unless someone looks you in the eye and hisses, ‘You fucking asshole, I can’t wait until you die of this,’ people are really trying their best. Just like being happy and sad, you will find yourself on both sides of the equation over your lifetime, either saying or hearing the wrong thing. Let’s all give each other a pass, shall we?

I look forward to reading more of Rakoff’s essays, and appreciate that he’s given me so much to think about, on living now.

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Image Share Project (Finally) Enables People to Share and Access Radiology Results

Today Laura Landro reports in the WSJ on the Image Share Project. According to her Informed Patient column, people who want to access and share radiology images pertaining to their health, such as MRIs or CT scans, can do so using this program. The platform enables easier transmission of electronic versions of large, detailed images. Pilot medical centers involved include New York’s Mount Sinai Hospital, UCSF and the Mayo Clinic.

a doctor looks at a medical image on a computer (NIH, NIBIB)

a doctor looks at a medical image on a computer (NIH, NIBIB)

The Radiological Society of North America is on board with the program. This makes sense, among other reasons because funding comes from the NIH’s National Institute of Biomedical Imaging and Bioengineering (NIBIB). According to the WSJ: “This is all about giving patients control of their health information and engaging them in their own care,” said David Mendelson, director of radiology-information systems at Mount Sinai and a principal investigator on the project.

I’m fine with this – how could I not be? Great, super, and of course patients should have access to electronic files of their x-ray images! Except why has it taken so long? Hard to fathom that in 2013 we’re exploring “pilot” sites where patients can enroll in a program that allows them to transmit their electronic health images to doctors in other cities.

Sooo 2003, you’d think.

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News on Occupational Exposure to N-PropylBromide, a Neuro-toxin

Yesterday’s NY Times drew my attention with a front-page article on the Occupational Safety and Health Administration (OSHA) and its inability to prevent harm among furniture and cushion factory workers in the U.S.  Even though hundreds of workers in North Carolina handling nerve-damaging glues have developed neurological toxicity, OSHA failed to suppress use of likely chemical culprits.

structure of n-propyl bromide (Wiki-image)

structure of n-propyl bromide (Wiki-image)

Regulating industry is complicated. The Times reporter, Ian Urbina, focuses on a compound, n-propyl bromide, aka nPB or 1-bromopropane, that’s used by “tens of thousands of workers in auto body shops, dry cleaners and high-tech electronics manufacturing plants across the nation.”

Problem is – it’s hard and possibly impossible, based on studies of factory workers, to prove cause and effect. He writes:

Pinpointing the cause of a worker’s ailment is an inexact science because it is so difficult to rule out the role played by personal habits, toxins in the environment or other factors. But for nearly two decades, most chemical safety scientists have concluded that nPB can cause severe nerve damage when inhaled even at low levels…

The lack of absolute proof – that a particular chemical substance has cause disease in an individual –is exacerbated by the fact that many cushion and glue workers’ symptoms, like numbness and tingling, are subjective: At one company, Royale, a ledger of employees’ illness is said to list “Alleged Neurologic Injury.” This phrase reflects the evaluators’ doubt of the handlers’ complaints and, by insinuation, adds insult to injury – some so severe the workers couldn’t button a shirt, feel a cut, bleeding foot, or stand for more than a few minutes.

The government agency that might respond, OSHA, is woefully understaffed. According to the Times:

“OSHA still has just 2,400 responsible for overseeing roughly eight million work sites — roughly one inspector per 60,000 workers, a ratio that has not changed since 1970. The federal budget for protecting workers is less than half of that set aside for protecting fish and wildlife…

Regulation of industry kills jobs, some say – it’s for this reason that some individuals most likely to suffer harm from manufacturing align with corporations. What’s more, if people lack education about chemistry and need employment, they may not choose or know what’s in their long-term best interests. This piece, like the story of Toms River, points to the unfortunate reality that many citizens tolerate and even take pride in a damaging local business, especially if the health problems it causes are insidious, affect some but not all exposed, and the facts aren’t in full view.

 

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Can Anyone Be a Patient Advocate?

The first time I met an official patient advocate, it was the spring of 1991. I was a first-year fellow, learning by treating patients with blood disorders and all kinds of cancers.

A young gay man with low platelets came to see me in consultation. It was his first visit to the clinic. As I walked by the desk on the way to greet him, the receptionist mentioned that the patient was accompanied by an advocate. “He’s from an organization,” she whispered. “Just thought you’d want to know.”

“OK,” I agreed, not sure what to expect.

My patient was a frail, tired-appearing and polite young man in his 20s. He lived in the West Village and was no longer employed, suffering from AIDS. The man who accompanied him was also thin, perhaps 30 years old – like me, then – and what you might call assertive. The advocate explained that he’d stay with the patient during the evaluation and discussion of recommendations. He added that he’d seen a file on me at ACT UP, and that I was “all right.”

We walked into one of the small consultation rooms. I took detailed notes on the patient’s medical history – too long for his age, approximately 23 years. His body was frail and bruised. A bouquet of tiny red spots lined his palate. Similar marks, a bit darker, coated his legs over and above both ankles. We called those – a manifestation of low platelets – petechiae. I reviewed the patient’s prior blood tests, and drew a sample that I might examine his cells under the microscope.  Later on, the patient, advocate and I spoke about his likely diagnosis and treatment options.

This encounter – my first with an advocate – happened approximately 22 years ago. I don’t know the long-term outcome of the patient’s story, but it’s likely he died of AIDS within a year or two of that encounter. He’d already had several serious infections, and his T cells were quite low as I recall. The advocate may have died, too, but I was not privy to his medical history. All I learned about the advocate – over the course of a few visits, and never by my asking him questions – was that he was involved with ACT-UP, that he was extremely familiar with AIDS manifestations, and that he cared that my patient have access to treatment by a considerate doctor.

So who’s a patient advocate, today?

I’ve been wondering about this, in part because I’d like to serve as a patient advocate on a committee and help decide on priorities, meeting agendas and funding for, say, breast cancer research. Some agencies consider that someone like me – a physician who’s had significant illness – can’t serve as a patient advocate at a table with limited chairs, because I have a medical degree. The problem is, I’m on “the other side,” or something along those lines.

"The Sick Woman," aka "The Doctor and His Patient," by Jan Steen, 17th Century, Rijksmuseum Amsterdam (WikiCommons)

“The Doctor and His Patient,” by Jan Steen

It happens that some physicians, including your author at Medical Lessons, are among the fiercest proponents of patients’ rights I know. I support patients’ unrestricted access to information about medicine and new research, to reasonable treatments matching their preferences and values, and to respect from health care providers. At the same time, I’ve seen doctors who, it seems, promote or outright advertise themselves as “patient advocates” on blogs, websites, in books and elsewhere. Suspicious, yes, but not necessarily untrue –

So here’s the question for the crowd: Can a good doctor, or a nurse, or a physical therapist, or any other person employed by the health care system, serve as a patient advocate?

I’m sure I served an advocate for my patients, years ago, while I was practicing, just as I might now, for people with various illnesses. Tell me I’m wrong.

Comments please! How, exactly, might we define a patient advocate? And, while we’re at it – who’s a patient navigator, and what’s the difference?

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What Do We Need Doctors For?

One of the first questions I asked on this blog was, Are Doctors Necessary? In  2010, I wondered if the Internet and other open resources could replace physicians’ advice. Say you’re feeling OK and not obviously sick, you might prefer to just read and draw upon the wisdom of the crowds, Google and books. If you have a pesky symptom, you might just look it up, or pretend it’s not there, and see if it goes away, without seeking a doctor’s input.

Marcus Welby, M.D. (1969–1976), IMDb image

Marcus Welby, M.D. (1969–1976), IMDb

But if you’re sick – if you’re a patient, and not a consumer, in this blog’s lingo – well, then, of course you need a doctor if you want to get well. Physicians are necessary, still, especially if you’ve got a serious illness, like colon cancer, malaria, catatonic depression, rheumatoid arthritis or Type I diabetes, to name a few doctor’s attention-worthy conditions. Even for someone like me, who’s gone through med school, residency, fellowship and spent years giving medical care to other people, having a thoughtful physician – someone whose experience and intelligence I trust – is indispensible.

My doctors help me sort through the literature, if I choose to read it (I don’t always) and figure out what makes sense for me to live without pain and as fully as possible. I value their work immeasurably. But, as much as I have been helped by nurses, physical therapists, pharmacists and peer patients, the doctor’s opinion matters most. Admittedly, I’m lucky in this. Over the years, I’ve accrued a team of excellent physicians whom I trust. That’s not a common scenario now, which is part of why this question matters so much.

The updated part of the question, now, is whether nurse practitioners (NPs), straight RNs, physician assistants (PAs), pharmacists, social workers and others including, yes, peer patients, should take up much – or even most, of doctors’ tasks. As outlined in a recent editorial, these non-physician health care workers can be paid less and may do a better job at certain chores that, historically, have been carried out by MDs. They can order scans and contact patients about the results, fill out forms for home physical therapy, measure your blood pressure and give injections, like flu shots.

At one level, assigning minor and not-so-minor tasks to other kinds of health care providers sounds great. It’s a partial, 2-for-1 solution, because it relieves the physician shortage and, simultaneously, lowers health care costs. It makes perfect sense, to a point, for efficiency.  There are, legitimately, some tasks that nurses are better-trained to do, such as giving medications. Pharmacists are more likely to pick up on dangerous drug combinations than busy pediatricians, because that’s the focus of their work and training. Peer patients are valuable too. Etc.

But if doctors are just thinking about your “case” or doing complex  procedures, and not being the ones to call you back, or putting in intravenous catheters, or even just sitting and taking a thorough history – they’ll know you less well. And if they spend less time with you, a patient with a serious illness, they – according to the laws of human nature, and my observations on rounds on hospital wards over many years – will not care so much about the outcome of your case. When and if a doctor spends time with a patient, that builds trust, concern, and – possibly, better outcomes.

Reality dictates that we have to protect doctors’ time so they can read, sleep, and spend at least a few minutes each day with the people they care about outside of the workplace, and take care of themselves. If we don’t unload some of the tasks to other health care workers, we’d have to assign fewer patients to each physician. That would exacerbate the shortage…

No simple answer –

ES

 

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Contemplating Breast Cancer, Beyond October 2012

It’s foggy today, October 3, ten years since the last mammogram I had and will ever need. I’ve been remiss in updating the blog. The reasons include family concerns and other projects. Meanwhile, I’ve been thinking about the big picture – what’s most important for progress against breast cancer in the decade ahead.

So here’s what I see, now – in terms of three priority areas: improving treatment, prevention, and education to inform treatment decisions.

Pumpkins, organized by subtype (WikiCommons image)

As an oncologist, I perceive huge strides in understanding BC since the time of my diagnosis. But these advances are largely invisible to patients because they’re in the realm of pathology and classification of different subtypes. What was essentially a 3-type malignancy with a handful of treatment options has expanded under the molecular microscope to a spectrum of 4, 10 or – what’s probably most accurate – hundreds or thousands of patient-particular conditions, depending on the level of precision by which you define a disease. I’m optimistic, because it looks as though, in my lifetime, BC treatment will be tailored to each patient. There’ll be less surgery and better drugs.

The hitch, now, is not so much with science as with funding– funding to analyze each patient’s tumor at the genetic and protein levels, funding to pay for treatments selected by patients (which might include less treatment and/or palliative care in advanced cases), and funding to educate doctors about BC subtypes and medical progress, so they might offer “modern” advice to each patient in ordinary clinics, apart from clinical trials and academic centers. Newer is not always better in medical care. Same goes for more treatment (especially when it comes to higher doses). Still, the lag between advances in BC science and application of distinct, targeted and better treatments is frustrating at best.

Some of my colleagues call for patience – emphasizing that studies need be confirmed, drugs tested in mice, etc. Their point is that we can’t jump from pathology research and new BC classifications to new therapy. But one lesson I take from progress against AIDS is that maybe we shouldn’t be so patient. At least not for young people with poor-prognosis BC subtypes or stage. We could do studies and studies of particular BC treatments, and studies of studies (those would be meta-analyses) and debate 8 or 10 years from now whether a particular drug or combination of drugs worked in clinical trials that selected for patients with an antiquated subtype of the disease. Or we could move toward “n=1” trials, with smart, well-trained physicians assessing each patient by a combination of old-fashioned physical exams and the most modern of molecular studies of the tumors, considering the options, and moving forward with individual, mini-experimental treatment plans.

I vote for the latter. If the drug works in a patient with advanced BC and the patient feels better, why not?

For people with early-stage BC, prescribing or taking new and essentially untested drugs makes less sense at first glance. That’s because standard treatments are “successful” – leading to long-term remissions and possible cures in over 80 percent of those affected. But these relatively good results may have, paradoxically, hampered development of better drugs that could obviate the need for breast-deforming surgeries and radiation in many women. The possible application of BC drug cocktails, in lieu of surgery for early-stage patients, is a huge question for the future, and one for which trials would be necessary. Just getting those projects going – applying BC science to treatment of early-stage cases – would be a step in the right direction.

As for BC prevention, of course that would be infinitely better than detecting or treating the disease. Unfortunately, I think we’re farther away from preventing the disease than we are from having effective and less brutal treatments for most patients. The problem with lifestyle modification – like staying active and not obese – is that it’s far from full-proof: You can be seemingly fit as a fiddle and get a lethal case of BC. Still, there are plenty of other health-related reasons for women to exercise and eat sensibly. As for avoiding carcinogens or, first, just knowing what chemicals contribute to BC formation and growth, the science isn’t there yet.  It’ll be a long haul before anyone can prove that a particular chemical causes this disease. That said, I advocate research in the slow-growing field of environmental oncology and wish there’d be more enthusiasm for regulating our exposure to likely-toxic chemicals.

The third priority is for improving education in math and science, starting at the elementary school level. Doctors need to understand statistics, but many don’t. They need to know about genomics and basic science in medicine. Patients need this kind of knowledge if they want to have a clue, if they want to engage meaningfully in decisions about which antibody to take, or pill, or whether they want to participate in a clinical trial of pills instead of surgery for a Stage II tumor with high levels of Her2, for example. That’d be a tough decision for an oncologist. I only wish that we could reach the point where we could have those kinds of truly informed conversations about clinical treatment of breast cancer, which happen every day.

We’ve got a lot of information in hand, but we need to learn how to apply that to more patients, faster and more openly.

All for a while. I’m open to ideas on this. Happy October!

ES

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A Comedian Tells the Story of His Child’s Cancer

Yesterday a video came my way on Facebook. It’s a stand-up piece by Anthony Griffith, who tells what it was like working as a comedian when his 2-year old daughter had recurrent cancer and died.

This 9 minute clip packs sadness and pain:

The Moth Presents Anthony Griffith

“If you don’t know about cancer, when it comes back it comes back hard.” It’s “meaner and stronger,” he explains. To compensate for its added aggressiveness, doctors raise doses of chemo and radiation. That’s not easy for anyone, a child no less.

He reflects on his daughter’s condition back then: “So she’s bald, which she doesn’t mind because every kid in the ward is bald, and she thinks it’s a part of life…”

He recalls his predicament, as a parent: “You’re not prepared for this. There’s no books, there’s no home-ed class to teach you,” he says.  Therapists were off-limits in his community. “So you try to figure it out.”

“What did I do?” he wondered, trying to make sense of his daughter’s illness. His musings cross all kinds of barriers.

Griffith was thrilled to appear several times on Johnny Carson’s Tonight Show. But NBC is “all about nice and everything is going to be OK.” He felt pressured to keep everything “light” when he wanted to speak honestly.

He recounts how he felt. “And I’m hurting, and I want everyone else to hurt because somebody is to blame for this,” he shouts, two decades later. He suppressed his anger, bucked up, and performed.

Rage persists, understandably, still.

The powerful clip is produced by the Moth, an NPO dedicated to storytelling. H/t to Jen Singer.

Thank you to Mr. Griffith, the comedian and actor, for telling it like it is.

 

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Don’t Blur the Message on Cancer Screening

This week the USPSTF renewed its position on ovarian cancer screening. The panel reminded the public that there’s no value in doing blood tests, like measuring the CEA, or having sonograms to evaluate healthy-feeling women for the possibility of ovarian cancer. One problem with the CEA measurement is that it goes up in various conditions; it’s not a specific test. Similarly, abdominal ultrasounds tend to pick up all kinds of blobby images that are rarely ovarian tumors. More often than not, ovarian cancer screening tests lead women to undergo more tests, such as CT scans and even surgery, without any benefit. The CEA tests and ultrasounds rarely “catch” ovarian tumors in an early stage.

This information on the lack of effective ovarian cancer screening methods is hardly news. What I hope is that this week’s headlines and editorials don’t add to the blurriness of the public’s perception of cancer screening – that people might think it’s a bad thing all around. The details matter. For some cancers, screening the general population – if it’s done right – can save lives and dollars. That’s because for most tumor types, treating advanced, metastatic disease is costlier than treatment of early-stage, curable tumors.

A few words on other cancers and screening –

Prostate cancer screening by PSA testing has never been shown to save lives. Because prostate cancer is unusual in young men and occurs commonly in elderly men, and in those cases tends to be slow-growing, screening’s potential – even if it were safe and effective – to save men’s life-years is limited. What’s different, also – and I think this is where some journalists get the story wrong by omission – is that early treatment of prostate cancer is rarely beneficial. By contrast, early treatment of breast cancer is often life-saving.

Lung cancer screening may be helpful in people at high risk, such as smoking, but one could argue that the CT scans used in those studies – which involve more radiation exposure than do mammograms, besides that they’re more costly – need a higher threshold of benefit to justify their use.

Colon cancer screening has been shown to save lives. For this tumor type, I think the issue is whether it’s worth doing colonoscopy in everyone over the age of 50, periodically, or better to test everyone for tiny amounts of blood (or, in the future, cancerous DNA markers) in the stool. Checking for occult blood in stood samples is a simple and perfectly safe method of getting a little bit of information about the probability of someone having a polyp or frank malignancy in the gut. If people who want to be screened for colon cancer would reliably take a sampling, it’s possible they might safely skip colonoscopy if there’s no evidence for bleeding or other signs of disease.

As for cervical cancer screening, that has definitely been an advance. Pap smears and other liquid cytology methods, now, perhaps HPV testing, have successfully countered this disease. Years ago, women would present, typically in their 30s, 40s or 50s, with large cancers pushing into the body of the uterus and lower abdomen. These were rarely curable. Rather than a scrape, or slightly bigger procedure in a gynecologist’s office, the women needed hysterectomies and radiation to the pelvis, which caused problems down the road if they were lucky and survived. In communities where young women get gynecological care now, we rarely see advanced cases of cervical cancer. For this disease, the question now is in fine-tuning the frequency of screening and understanding how HPV tests can inform or supplement the Pap smear.

As for mammography in breast cancer screening, please don’t get me wrong. I am not fixed in my position that it’s worthwhile and should be performed every other year in most women over the age of 40 until they reach the age of 70 or so, depending on their wishes and overall health. Rather, I acknowledge it’s far from a perfect screening tool, and I genuinely hope that in the future we’ll prevent breast cancer entirely or at least find a better, safer way to detect it early on. But until that happens, for the time being, mammography is a well-established, routine procedure that is the best we’ve got to prevent tens of thousands of middle-aged women from dying every year in the U.S. from metastatic BC.

I generally ascribe to the “less is more” school of medicine. But that doesn’t mean we should ignore early-stage breast tumors, especially when they occur in young-ish women. Rather, it means that we should treat what cancers we do find carefully and conservatively, with the least therapy needed to raise a woman’s chances of leading a normal, healthy and full life.

All for now,

ES

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Breakfast Will Never Be the Same Again

#Ordinary, heart-wrenching: “I remember one time when my mom asked me to get her a bowl of Cheerios, and we ate them together” – http://bit.ly/OsFfHO

I couldn’t fit the hash-tagged words above, with the link, into 140 characters. So here’s a post for the weekend and school year ahead:

Some of the breast cancer bloggers have been posting lately on the ordinary things that contribute to our well-being. The idea is one I’ve considered previously and attribute in part to Mom-blogger and post-lymphoma person Jen Singer, who once wrote about the immeasurable value of doing laundry, or something like that.

The point is – it’s not all about the vacations in Thailand, birthdays and rock concerts. Or opera, if you’re into that. Rather, it’s the everyday stuff that fills our lives.

Before I get too Hallmarky…

This morning Lisa Fields, aka @PracticalWisdom, sent a Tweet that caught my interest. Nominally, it was on the “geography of verbs” as considered in a commencement address. I clicked. The Guilford College speaker, author Patti Digh, recalled a young family that appeared a few years back on the Oprah show.

The mom was dying, with cancer. Digh recounts:

After she died, Oprah welcomed the family back to her show and asked the kids a question: “What is one of your favorite memories of your mom?” I’m sure Oprah imagined they would talk about swimming with dolphins or one of their big adventures with her, but the little girl said very quietly, “I remember one time when my mom asked me to get her a bowl of Cheerios, and we ate them together.”

Bingo. It’s the little stuff, as Digh explains. What the child – or an adult “survivor” in the sense of one who outlives the person and remembers selectively – values may or may not match what matters most to the patient.

This is the opposite, or at least a twist in perspective, relative to what the bloggers are talking about. And it’s the same. A logical puzzle, maybe, for life.

#EveryDayMatters.

Enjoy the weekend, all!

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Talking About Physician Burnout, and Changing the System

Dear Readers,
I have a new story at the Atlantic Health. It’s on burnout among physicians. The problem is clear: Too many have a hard time finding satisfaction in the workplace. Many struggle with work-life balance and symptoms of depression.

With many difficult situations, the first step in solving a problem is in acknowledging it exists. After that, you can understand it and, hopefully, fix it. Our health care system now, as it functions in most academic medical centers and dollar-strapped hospitals, doesn’t give doctors much of a break, or slack, or “joy,” as Dr. Vineet Arora suggested in an interview. You can read about it here. The implications for patients are very real.

Glad to see that research is ongoing about physicians’ stress, fatigue and depression. Thank you to Drs. Tait Shanafelt, Mary Brandt, Vineet Arora and others for addressing these under-studied and under-discussed issues in medicine. Through this kind of work, policy makers and hospital administrators might better know how to keep doctors in the workforce, happy and healthy.

ES

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