Glad to Spot a Pink Ribbon

This morning I walked into a Starbucks and noted a woman wearing a little pink ribbon on the lapel of her suit. She appeared to be in a meeting, speaking seriously with a small group of people dressed for business.

How great is that, I thought, that she wears the pink ribbon unabashedly, in this October of 2011. She sees nothing wrong with raising awareness about breast cancer, or expressing her concern about this killer of women. Kudos!

In some circles now it’s fashionable to bash pink symbols, to say how breast cancer shouldn’t be prettified, or commercialized, or overblown. What I’d say is, of course, the disease isn’t beautiful, or good, or inherently profitable, or to be perceived as a gift. It’s none of those things.

But we take for granted, lately, how open people are about breast cancer and its complications. Twenty years ago, and even ten, many women I knew took their treatments silently. Few disclosed their illness to others in the community. Many lacked open sources of information or support. For some, breast cancer was a source of shame.

Times have changed, indeed.

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1 in 70 Women Develops Breast Cancer Before Reaching 50 Years

A post in yesterday’s Well column, about coverage of breast cancer by the media, focused on the first-person narrative of NBC’s Andrea Mitchell. Journalist Tara Parker-Pope writes:

Her announcement has generated much discussion in the blogosphere, including an analysis by Gary Schwitzer, publisher of HealthNewsReview.org, who writes that Ms. Mitchell made some missteps in discussing her cancer.

The Times column goes on to consider what was said, and how it might have been said better, and I agree with much of it. But mainly it’s a meta discussion, journalists talking about how other journalists consider breast cancer facts, figures and narratives.

Buried deep is this number, that according to the NCI, one in 69, or for the sake of simplicity – approximately 1 in 70 – women in the U.S. will receive a diagnosis of BC in her forties. That is an astonishingly enormous proportion of women under 50 years affected by a devastating disease.

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Considering Steve Jobs, Medical Diagnoses and Privacy

Yesterday morning I wrote a short post on CelebrityDiagnosis.com. By evening, news broke that Apple founder and CEO Steve Jobs resigned from his position, presumably for reasons of his health.

What’s public, by Jobs’ decision, is that he had a relatively good, typically slow-growing kind of malignancy in the pancreas, a neuroendocrine islet cell tumor. He informed Apple employees by email about his diagnosis in 2004, when he was 49 years old. Since then he’s had a liver transplant. Possible complications of that surgery, or the tumor itself, have led to considerable speculation. But little is known about the details of why he took medical leave in January and is stepping down now.

In a published letter to the Apple Board and Community, he wrote yesterday: “I have always said if there ever came a day when I could no longer meet my duties and expectations as Apple’s C.E.O., I would be the first to let you know. Unfortunately, that day has come.”

The letter was “short and classy,” in David Pogue’s words, and I agree. I respect Jobs’ decision to keep the details of his medical condition private. That’s the thing – and where this is post is heading.

When public figures are open about their illnesses, it can be helpful, instructive and even necessary. For example, if a political figure, say Fidel Castro or Hugo Chavez or Dick Cheney, with considerable power develops a cancer or has a stroke or a heart attack or some other serious medical problem, the citizens have the right to know that the condition of the person they rely on has changed.

Sometimes it’s instructive to learn about famous people’s medical stories, as is illustrated in Barron Lerner’s book, When Illness Goes Public: Celebrity Patients and How We Look at Medicine. Openness about breast cancer by women like Happy Rockefeller, Rose Kushner and more recently Elizabeth Edwards (to name a few among many) have helped women move forward, from being ashamed of having BC to understanding about what it’s like to live with the disease. They helped other women to understand this disease, through their generosity of personal stories and experience.

The problem is that in our culture there’s so much openness about medical conditions, individuals may feel compelled to tell what’s happening if they have cancer or a recurrence or some other unfortunate medical event. But not everyone wants to do so, nor should they feel obliged.

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Cathy Swims and Runs in Episode 6, Season 2 of the Big C

I almost liked the latest installment of the Big C. Cathy swims, for starters. I could relate.

She’s wearing goggles, no less. That’s universal “code” for seriousness about swimming, or acting. She swims well and pretty fast. Within seconds she befriends the competitive girl-swimmer in the next lane and, wouldn’t you know it, the girl’s team needs a new coach.

Cathy, who is undergoing treatment for Stage IV melanoma in a clinical trial about which the audience knows 0, steps in to coach the team. She meets some resistance from parents who worry about her condition and associated unreliability. She alludes, vaguely, to her rights as a cancer patient and firmly vows to lead the team.

“I can do it” is this episode’s message.

After some ups and downs, and after the viewer suffers from the director’s crude decision to mix the patient’s possibly having a pelvic rash as a side effect with her learning that she has crabs, aka pubic lice, Cathy goes running with the swim team members.

Cathy runs with the team in Showtime's 'The Big C'

How often can a metastatic cancer patient in the midst of serious systemic (meaning non-surgical, not focused radiation or minor) and non-hormonal cancer treatment run with athletes 25 years younger? Only on TV, or in very, very exceptional cases.

Some basics, please: How about feeling tired? Or a relevant rash?

A dose of reality might help this TV program that’s said to be about cancer, or life with cancer.

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On My Mind

Yesterday I checked in on the Cancer Culture Chronicles, a thoughtful and sometimes funny blog by Anna Rachnel, who lives with metastatic breast cancer.

There I learned that the author of Living With Cancer, a blog I’d read occasionally and has been in the back of my mind lately, is dead. Sadly, I never had the chance to meet or speak with Daria.

From a eulogy in the final blog entry: She was born in 1961 in Alberta, Canada. Her breast cancer diagnosis came on in 2000, when she was 39 years old. She received surgery, chemo and radiation and additional meds. According to her first blog entry of August 2008, she’d had a local recurrence in 2004. The disease came back on the other side and elsewhere around then she started her blog. Among other things she accomplished in her life, about which I know too little, she participated in a clinical trial of an experimental drug, Brivanib, and advocated for cancer patients by speaking with members of the Canadian Parliament. She died this past January, a few days before her 50th birthday, survived by her mother, sisters, brother and husband.

From Daria’s first post, upon her 2008 recurrence: “…It is still too difficult to discuss the details. I’m hoping that sharing my experience will help me cope with the reality of my illness.”

Based on what’s evident on the blog, it seems likely that the on-line writing probably did help her, personally and individually. But perhaps, even more so, the blog is instructive for others, now. I suspect there’s a lot more I and others might learn from her story and digital afterlife.

With respect

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Pink’s OK With Me

On Sunday, Feb. 20, the Northeastern Pennsylvania Affiliate of Susan G. Komen for the Cure will host its seventh annual Pink Elegance on Parade fashion show at the Radisson at Lackawanna Station hotel, reports the Scranton Times Tribune. The fundraiser will feature breast cancer survivors and others modeling fashions from Coldwater Creek, Lee’s Denim Diner, Luna Bleu and Suburban Casuals.

Portrait Of A Lady In Pink Ribbons, by Raimundo Madrazo (Wikimedia Commons)

Some BC survivors, thrivors, thrivers, in-the-throws-ers and whatever we might call ourselves (I still can’t make up my mind on this) express disdain. Others, lately, convey cynicism, if not frank contempt, for the pink cancer culture in its entirety.

Pink is tacky, pretty and possibly too rosy a color to link with the fate of so many sick and dying women. I half-agree. But then again, I’ve never favored pastels: I’m a brown and gray sort of woman. When I’m feeling cheery, I wear navy or maybe mauve. This is not a policy statement; it happens those hues match my skin tone and nature.

Yes, I and others have written that it can be off-putting, that it clouds and distracts us from the reality of cancer. But it takes a certain confidence to don a magenta outfit and not feel silly or excessively feminine (if there is such a thing), as I would, regardless of one’s BC status or awareness level. So I give women credit for wearing pink. And I’m half-envious, besides.

If you’ve had breast cancer and wear pink – why not? I fear the anti-pink movement is making people feel bad about wearing pink to show support for breast cancer awareness, fundraising and related issues. Which is ridiculous. People with breast cancer and their supporters should wear what they want and do as they please, at least wardrobe-wise.

So all power to you, women in Scranton and BC fundraising friends! Show off those post-treatment non-breasts. Be pretty in pink, and proud!

And I’m sure you won’t mind if I wear gray. In the end, isn’t this about supporting one another, and tolerance?

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Annals of Pink: Chilean Miners Don Ribbons

The Santiago Times reports that the rescued Chilean miners donned suits and pink ribbons, the latter in honor of breast cancer awareness month, at a ceremony at the the presidential palace, la Moneda.

Sure, the pink scene’s getting to be a bit much around here. But I don’t belittle this gesture; the miners’ intentions are surely well-meaning, and in places like northern Chile where they lived and worked, BC doesn’t get the overblown attention it does here, at least not yet. Not even close.

So kudos to the miners, from this one blogger in NYC.

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October 13 Would Be National Metastatic Breast Cancer Awareness Day

According to the most recent figures available, roughly 160,000 people are living with metastatic breast cancer in the U.S. The number may be higher now, based on progressive availability of new drugs – especially in the past decade – that are slowly extending the average life-expectancy of women with Stage IV disease.

Last October, the U.S. Senate (on 10/13/09) and House (retroactively, on 10/28/09) voted to support the designation of October 13, 2009, as a National Metastatic Breast Cancer Awareness Day. The point was to draw public attention to the distinct needs of metastatic BC patients: women who live every day with this condition but, for the most part, are not heralded in pink.

My hope is that before October 2011, President Obama will make this day official: October 13 should be National Metastatic BC Awareness Day – so that women with advanced disease will know they’re not forgotten and, rather, will catch the public’s eye.

My pick for NMBCA Day’s official color: gray, to signify seriousness and uncertainty; but of course every woman should choose her own style!

Please see a related HuffPo piece; that includes patients’ and others’ viewpoints on this topic.

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What’s Missing in the Recent Mammography Value Study

This week’s New England Journal of Medicine includes an article*on the potential benefit of breast cancer (BC) screening by mammography. The paper, authored by a group of epidemiologists and biostatisticians from the Cancer Registry of Norway, Harvard University, the Dana Farber Cancer Institute and Stockholm’s Karolinska Institutet, suggests that mammography has a relatively small influence on survival.

The work, along with an accompanying editorial* by H. Gilbert Welch, M.D., M.P.H., got front-page attention in the Times and elsewhere. My friends want to know why this particular research study was featured and, really, what it showed.

So here’s my take –

The analysis:

The researchers studied chronological trends in BC diagnosis and mortality in Norway. To see if mammography had an effect, they divided the country into two groups, “screening” and “non-screening,” based on when a state-sponsored mammography screening program was implemented in each of 19 counties there. The national plan, which required that each region establish a centralized, multidisciplinary BC care team before participation, began in 4 counties in 1996 and gradually expanded to include all of Norway by 2005. According to the authors, all Norwegian women between the ages of 50 and 69 years have been asked to participate in screening mammography since 2005; 77% have done so; Norway’s nationwide cancer registry is nearly 100% complete.

They evaluated a total of 40,075 women (“subjects”) who received a diagnosis of BC between 1986 and 2005.

Major findings:

For women between the ages of 50 and 69, BC-associated mortality** fell from 25.3 to 18.1 in counties where a government-sponsored mammography program was implemented early on, and from 26.0 to 21.2 in counties where mammography was not covered, over a similar time frame. Because BC-associated mortality declined in all regions of Norway, regardless of whether mammography was offered, the authors conclude that screening can’t account for all the reduction in mortality.

By their calculations, mammography accounts for roughly 10 percent of the enhanced survival. (This finding was not statistically significant.)

The authors suggest that recent progress in BC survival – which in their study improved significantly in all regions of Norway – comes, for the most part, from better care and treatments.

What’s wrong with the paper? I see several key flaws:

1.  The average follow-up is only 2.2 years after diagnosis, with a maximum follow-up of 8.9 years (“Results,” p. 1206). This is far too short a follow-up interval to measure the benefit of mammography or any sort of intervention in women with breast cancer. When BC recurs it’s often after several years and, occasionally, decades later.

2. Among women under the age of 50 there was a slight increase in BC-mortality noted: A non-significant relative increase in mortality, of 4%, after the introduction of the screening program for older women (p. 1207, Table 1). This worrisome finding is not adequately addressed by the authors; one might wonder – did fewer women in their forties go for mammograms after 1996, since they were only recommended and covered for older women? (My concern is that reduced screening, now, in younger women might lead to an increase in BC mortality.)

3. Digital mammography was not evaluated in this study.

4. The authors detected the greatest benefit of screening among women with Stage II BC; there was a “marked” 29% reduction in mortality relative to the historical counterparts for that group who were screened, as compared to only a 7% reduction in mortality for women with Stage II tumors in counties where screening was not available over the same historical interval (p. 1207). This observation suggests that mammography screening is most life-saving for women with Stage II tumors. As an oncologist, I find this highly-plausible; the purpose of mammography is to identify tumors in early stage and spare women morbidity and mortality associated from advanced disease.

5. There’s no mention of the absolute number of lives saved by the procedure according to the authors’ calculations, but I think this is an important number to keep in mind when we assess the procedure’s value. If the paper’s conclusion is true – that mammography reduces BC-associated deaths by just 10 percent – then in Norway, with a total population of 4.8 million and where some 4,791 women in the study died (p. 1206), these results support that mammography spared approximately 480 lives in those 20 years.

My spin:

Mortality in the U.S. from breast cancer has declined by roughly a third since the implementation of wide-spread mammography screening. Here, where some 45,000 women die each year of BC, we’d save 4500 lives per year if the added value of mammography is just 10 percent, as suggested by the new study. If the benefit of screening mammography is higher – in the range of 45 percent, as was supported by a 2007 paper, also published in the NEJM – then the value would exceed 20,000 women’s lives per year. If the benefit is only 25 percent in terms of reduced mortality, that would result in over 11,000 lives saved, per year in the U.S.

As for the editorial, first I’ll say that the opening statement – that “no screening test has ever been more carefully studied than screening mammography,” is misleading. While this was, indeed a well-organized and careful study, among other issues it was far too short in patients’ follow-up to measure the impact of mammography on BC survival. The Annals papers, which caused so much controversy last year, relied heavily on old data and did not at attempt to examine the efficacy of digital mammograms.

What’s needed, still, for public health policy in the U.S. is evidence regarding the long-term outcomes after digital mammography performed in FDA-regulated, modern facilities by skilled, board-certified radiologists applied every other year in women who are over the age of 40 in the context of modern, adjuvant treatments and current pathology methods.

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As for the analysis by G. Kolata in the Times, where she wrote:

“…it indicates that improved treatments with hormonal therapy and other targeted drugs may have, in a way, washed out most of mammography’s benefits by making it less important to find cancers when they are too small to feel.”

I’d say the opposite is true:

It’s precisely because there are effective treatments for early-stage disease that it’s worth finding breast cancer by mammography. Otherwise, what would be the point?

Metastatic breast cancer is quite costly to treat and, even with some available targeted therapies, remains incurable.  Despite so many advances in treating early-stage BC, the survival rate at 5 years is under 25 percent for women with Stage IV disease.

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*abstract available, otherwise by subscription

**mortality rates: per 100,000 person-years

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Stepping Back, and Thinking Forward to October

Before jumping into the raring-to-go, already re-sparked debate on the value of breast cancer screening, or not, I thought I’d step back today and consider the background of what I won’t call the “mammography wars.”

So here’s the first point on this subject: happily, it’s not a war. This is about medical progress, or lack of progress, and what may or may not spare women morbidity (what doctors and stats types call illness) and mortality (death). This is not a battle by any sane measure.

The discussion should be civil and fair, ideally without assumptions and bias. (Of course it’s impossible for me to be unbiased on this subject – I am a trained oncologist, I’ve treated women with breast cancer who responded to chemotherapy drugs and witnessed their subsequent well-being, and I’ve seen women with metastatic breast cancer who died with disease eating through their bones and brains. And I had breast cancer, and was lucky that mine was found in an early stage. So far am well in that respect, eight years ago next month and counting -)

So I have bias, yes, but my second point is that we all do. Every journalist does, whether or not they’re up front about their life-experiences and community background, and so does every medical researcher and public health official who authors a paper and is not a robot. We delineate stories, analyze and represent data based on points we want to make and, in some medical journals – even for some trials that aren’t funded by drug companies – publish to serve academic, career or even what we think are idealistic, cost-saving, pain or procedure-sparing often high-minded goals.

Data can be very tricky to sort out and among.

The problems with mammography studies, as partly-detailed in the current NEJM paper, is that it’s considered impossible to do a controlled, randomized trial in which half of the women undergo screening and half don’t. (I might argue this assumption; now, that so many women and doctors are questioning the merit of mammography, maybe we could do a truly randomized trial involving a few thousand women in the U.S.) This issue relates to the important topic of ethics and real-life dilemmas oncologists face when they set up studies for evaluation or treatment of humans some of whom are likely to die.

But before we delve into the details of this study, and next month (October), what I hope is that we’ll keep some facts in mind:

The National Cancer Institute estimates that 40,000 women will die of breast cancer this year in the U.S. There’s been dramatic progress in how we manage this once-dreaded condition: prior to 1926, fewer than 20 percent of women survived for 5 years after diagnosis. By 1950, the overall 5-year survival rate among Caucasian women with breast cancer was 60 percent. Now, the overall 5-year survival rate is around 91 percent.

A question central to today’s discussion – which does at least acknowledge the decline in breast cancer mortality – is the extent to which mammography is responsible for this trend, as opposed to other factors such as increased awareness about cancer, better cancer treatments and other variables.

What concerns me is the tone of the debate on mammography, that it shouldn’t subtly or not-so-subtly, denigrate women’s valid concerns about their health. The quote with which today’s front-page story ends is this: “I think we have to respect what women want to do.” The way the story is framed insinuates that a decision to undergo mammography is based on something other than reason.

To be clear: this is not about what women want. It’s not about emotional turmoil, comfort, stress or people’s feelings. It’s about the efficacy of state-of-the art mammograms and whether or not those, when taken by skilled, well-trained radiologists in carefully-regulated modern facilities save women’s lives, at a reasonable cost (however we might calculate that) and reduce illness by detecting breast cancer in its early stages.

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A Walk, or Race, for the Cure

“You can get discomboobulated in this place,” a NYC police officer told me today when I asked him the way.

This morning, some 25,000 or so men, women and children converged on Central Park for the Susan G. Komen Foundation‘s 20th annual Race for the Cure. It was my first time witnessing the event:

pink shirts, umbrella and rainbow, waiting for the start

I AM THE CURE

woman in black, pushing stroller

woman with Victoria's Secret umbrella

men, walking together

WTFC poster, held high

walkers in blue, near the Sheep Meadow

finish line with red light

Scan Van in the Park

ML is learning to use her camera.

School tomorrow!

p.s. 9/13: discomboobulated is not a typo!

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First Take On the Big C

Laura Linney as Cathy in The Big C

Last night I stayed up to watch the first episode of Laura Linney portraying a middle-aged woman in a new series called The Big C. The story is that she’s got a teenage son and a recently estranged, overweight husband who loves her. She lives in a suburban house that could use some work.  She teaches in a high school. She has a brother who’s deliberately homeless.

Her name’s Cathy – how ordinary can you get? Well, Cathy recently found out she has a terminal case of melanoma. In a change of pace, she expresses herself freely and does pretty much whatever she feels like doing.

For me, this TV situation has some big draws:

Laura Linney‘s a fine, not uninteresting actress. A few years ago she played a charming Abigail Adams in a history-minded miniseries. But I couldn’t bear to watch her miscast counterpart, Paul Giamatti, pretending to be President John Adams, so I didn’t. As in the storyline of the Big C, here’s an opportunity for Linney to shine.

Gabourey Sidibe, a young obese woman who stars in the movie Precious, may or may not be a fantastic figure on film or TV. She’s yet to be established beyond her debut and after watching last night’s episode I’m concerned already that she’s being “used” as an object for the protagonist’s preterminal beneficence. Still, she’s a definite plus.

The Big C‘s plot includes at least two “atypical” and potentially complex features. First, Cathy chooses not to take chemotherapy or other treatment. This intrigues me, and may be the show’s most essential component – that she doesn’t just follow her doctor’s advice. Second, she doesn’t go ahead and inform her husband, brother or son about the condition, at least not so far.

We’ve seen this non-communication before in movies (Susan Sarandon in Stepmom, for instance) and in real life, for most of human history. It’s too-easy for a blogger-patient-oncologist to forget that not long before our Facebook era, most people didn’t talk much about having cancer and even today, many patients prefer not to do so. Norms change.

If the point of the Big C is to broaden the dialog on cancer and talking about cancer, that’s worth a lot, still.

What’s wrong with the program? I think the doctor has some brushing-up to do about his image. He’s 31 and Cathy’s his first “case” – all of which is credible, but with the exception of an x-ray briefly revealed on the wall-mounted light-box, it’s not clear if he’s an oncologist or a dermatologist somehow offering her chemotherapy and pamphlets. His white coat is too short, in the style of a medical student’s. He uses few polysyllabic words. He looks well-rested and neat. In one strange scene, the patient and doctor meet for lunch at a pleasant outdoor restaurant. That’s not how oncology’s practiced, at least as I know it.

But I’m learning, too. And I’m wondering about the informational content of the doctor’s slick handouts, about which the protagonist, Cathy, has a vision.

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The “Survivor” Term After Breast Cancer: Is There a Better Expression?

I hope this post will be the start of a long conversation on breast cancer survivorship. The question is, what’s the right, PC and emotionally-sound, sensitive but not sappy term to describe the situation of a person who’s living after breast cancer?

Some might say, who cares if you’ve had it?

Once, about six years ago, a colleague – an oncologist in my community – I met on the street stopped and asked me how I’d been. I said, well, I’d been out for a while because of some health problems. I mentioned that I had breast cancer among other things. “Who doesn’t have breast cancer?” she quipped, and then we talked about medical offices.

So what? was her point.

Sure, everyone’s got stuff by the time they approach their 50th birthday. Life would be pretty boring if we didn’t. And my personal history happens to include BC.

OK, NBD.

Why it matters, at least in my situation, is that I’m writing about health issues including breast cancer. So I think it would be deceptive to not mention this loaded “credential.” In a few weeks I’ll be teaching med students again, and although I don’t think that episode of my life is central to my capability as a teaching physician, I do think (and hope) it makes a difference.

Thinking more generally:

A lot of women, me included, have major physical changes upon undergoing treatment for BC. My hair was curly for most of a year. My breasts are gone. My bones are thinner and I’m estrogen-deprived. Sound depressing? It is, for as many as 30 to 40 percent of women at some point after their diagnosis. It’s not a minor experience in the physical, emotional or life-changing sense.

TV aside, the problem with the “survivor” term is that, maybe, it implies some sort of heroism or strength. But as an oncologist who happens to have had good insurance, knowledge and friends in the field, I just see it as, largely, the luck of the draw: there’s no reason for me to survive while another woman struggles and succumbs to metastatic disease.

I can’t deny to my readers, family, friends and others that I’ve had breast cancer, because it does affect my writing, feelings, capabilities and outlook. But I wish there were a better term for my status.

Any ideas?

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Peter Sings Colonoscopy

Hi Readers,

This new form of medical information outreach outweighed any other contenders for today’s post:

“When I had my colonoscopy I had a question on my mind.

Do we all look the same when the doctor sees us from behind?

Then I had the answer…

Peter Yarrow, starting The Colonoscopy Song

Am I pro- or con- colonoscopy for routine screening, you might wonder. Well, that depends.

Am I pro- or con- famous singers and other celebrities extolling the benefits of particular medical interventions? Well, that depends, too.

But I’m sure I prefer “Puff the Magic Dragon.” Also “Leaving on a Jet Plane” fills me with imperfect memories of 6th grade. (I don’t know much about the history of this song, but there is an older, grainier and harder-to-hear version on YouTube dating to March, 2008.)

Thanks Peter, for this unique verbalization of what some doctors might otherwise convey. Glad to see you singing, aging, smiling about something.

The CDC confirms that March is national colorectal cancer awareness month (NCCAM).

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