Get Off My Case

In my inbox this morning, via ASCO‘s “Cancer in the News” feed:

The UK’s Telegraph (5/6, Beckford) reported that as “many as 20,000 British women could avoid developing” breast cancer “each year, if they took more exercise, drank less and ate better.” Latest figures “suggest that 47,600 women developed breast cancer in 2008,” and the World Cancer Research Fund estimates that estimates that “42 per cent of these cases…would be preventable if women developed healthier lifestyles.” The WCRF’s “10 Recommendations for Cancer Prevention include being ‘as lean as possible without becoming underweight’; keeping fit; limiting consumption of fatty, salty and sugary food and drink; eating fruit, vegetables and pulses; eating less red meat and processed meat; drinking less and choosing a balanced diet rather than vitamin supplements.”

This follows numerous reports that women may develop breast cancer or suffer recurrences because they eat too much, drink too much, work too much or fret too much. (But don’t relax and put down your vacuums, girls – there’s striking evidence that household chores can reduce your risk!)

Of course it’s wise from a general medical perspective – think in terms of heart disease, osteoarthritis, type 2 diabetes and other ailments prevalent in our too-developed world – to be slender instead of fat, exercise regularly and eat a balanced diet.

I’m tired of the press trumpeting poorly-done trials that feed into a stereotypic conception of how women should behave. Yes, diet and stress could play a role in any hormone-driven disease, but so do a lot of things. As for alcohol, maybe consumption is a surrogate for wealth and living in a place like the U.S. where people drink freely, where breast cancer rates are unseemly.

We should be sure of the facts before pronouncing these fatal flaws in our ways of existence and being. Plenty of women feel badly about their tumors and disfigurement without this added layer of insult.

And what did you eat for dinner last night, big brother?

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Getting the Blood Tests Right at the Phlebotomy Center

Last week I had some blood tests taken before a doctor’s appointment. I went to a commercial lab facility, one of several dozen centers for collecting specimens have opened up in otherwise-unrented Manhattan office spaces lately.

I have to say I really like getting my blood work done at this place, if and when I need blood tests. And it’s gotten better over the past few years.

First, pretty much all they do in the lab center is draw blood and collect other samples based on a doctor’s orders. So the people who work there are practiced at phlebotomy, because it’s what they do most of the time. The guy who drew my blood last week did the same a year or two ago, and he was good at it back then. He used a butterfly needle and I didn’t feel a thing.

Second, they seem organized and careful about matching specimens to patients. The man who drew my blood didn’t just confirm my name and date of birth, but he had me sign a form, upon my inspecting the labels that he immediately applied to the tubes of blood he drew from my right arm, that those were indeed my samples and that I was the patient named Elaine Schattner with that date of birth and other particulars.

Sounds like a paperwork hassle for the phlebotomist? You might say this is time-costly for his employer and for me, the patient. Maybe, but I’d rather have my blood samples drawn in a place ordered like that, where it’s less likely that my tube of serum will be accidentally switched with another person’s, generating error, confusion, possible unnecessary worry, further hassle and costs.

I have a strong preference for not cutting corners when it comes to my health care. I’m glad there are more regulations of clinical laboratories, enforced mainly through CLIA. In a busy physician’s office or other medical facility where doctors and nurses and technicians are strapped for time, and too-often plainly tired, the more essential are these quality checks.

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The Trouble With Ginger

A short post for Friday:

The Times published a short piece on ginger this Tuesday, on whether or not it relieves morning sickness. The conclusion is that it’s less effective for nausea in pregnancy than in seasickness and chemotherapy treatment.

When I was getting chemo, I received a gift of ginger tea. It didn’t help at all. Now, if I even sniff that stuff, I want to throw up.

Curiously, I have no problems with ginger in food. I use the fresh ingredient all the time.

No explanation –

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Dr. Greenfield is Human

A few days ago I read that Dr. Lazar Greenfield, Professor Emeritus at the University of Michigan, resigned as the president-elect of the American College of Surgeons over flak for authoring a Valentine’s Day-pegged, tacky, tasteless and sexist piece in Surgery News. The February issue is mysteriously absent in the pdf-ied archives. According to the Times coverage: “The editorial cited research that found that female college students who had had unprotected sex were less depressed than those whose partners used condoms.

From Pauline Chen, also in the Times:

It begins with a reference to the mating behaviors of fruit flies, then goes on to discuss studies on the menstrual cycles of heterosexual and lesbian women who live together. Citing the research of evolutionary psychologists at the State University of New York, it describes how female college students who had been exposed to semen were less depressed than their peers who had not, concluding: “So there’s a deeper bond between men and women than St. Valentine would have suspected, and now we know there’s a better gift for that day than chocolates.”

Not that I’m OK with any of this, as I’ve known the ickiness of older male physicians who don’t even realize when they’re being inappropriate.

But this morning I learned from Orac that Dr. Greenfield is the Dr. Greenfield, the one that invented the Greenfield filter. This threw me a bit, because I admire Dr. Greenfield for his work. He’s saved a lot of lives, perhaps tens of thousands. (I’m guessing on this number; it could be more, the point is – a Tsunami’s worth of lives.)

Doctors, including non-surgeons like me, would sometimes advise insertion of Greenfield filters in patients with blood clots and a contraindication to blood thinning. One example of countless I recall in my own experience as an oncologist: an elderly patient with pancreatic cancer and limited mobility who had a DVT in the leg and a brain met. We wouldn’t want to give the patient a standard blood thinner, like heparin or coumadin, because the tumor in the brain might bleed with catastrophic effect.

The common teaching was that a Greenfield filter, inserted through a large thigh vein up to the inferior vena cava, would prevent a blood clot from spreading from a patient’s leg up to the heart’s right chamber and into the lung’s circulation, where it might lodge in the form of a pulmonary embolus, a serious and sometimes lethal condition.

As a patient, I once had a newer-model Greenfield placed on a temporary basis. Because I’d had a major DVT while immobilized after spine surgery for scoliosis as a teenager, and then I had breast cancer – another risk factor for DVT – when I needed spinal repair as an adult in 2003, my orthopedist and hematologist were concerned that my risk for developing another major clot was great. Because they couldn’t put me on an anticoagulant for days after such a big operation, they advised prophylactic insertion of a temporary Greenfield device. I accepted the plan, hesitatingly, as reasonable.

So from both my professional doctor’s and my patient’s perspective, I’ve perceived value in Dr. Greenfield’s contribution and possibly benefited from his work. Then again, a 2000 review in Blood suggests more evidence is needed to support the filters’ widespread use. I agree.

The clearest take, maybe, is that some powerfully driven, innovative and brilliant people make personal mistakes.

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May I Call You ‘Doctor’?

Last week I considered the relationship between the Prince Albert and his speech therapist in The King’s Speech. One aspect I wanted to explore further is why the future king initially insisted on calling the practitioner “doctor.”

In real life, now, patient-doctor relationships can be topsy-turvy. This change comes partly a function of a greater emphasis on patient autonomy, empowerment and, basically, the newfangled idea that the people work “together, with” their physicians to make informed decisions about their health. It’s also a function of modern culture; we’re less formal than we were a century ago.

Patients enter the office with their own set of information and ideas about what they need. The recent Too-Informed Patient video highlighted this issue, effectively.

Doctors are human, we are painfully aware in 2011. They make mistakes and they sometimes need to have dinner with their families. They may even let us down.

When I was a young physician, my patients almost universally called me

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A Note on Positive Thinking

Today I came upon a Jan 24 op-ed, A Fighting Spirit Won’t Change Your Life by Richard Sloan, PhD, of Columbia University’s Psychiatry Department. Somehow I’d missed this worthwhile piece on the sometimes-trendy notion of mind-over-matter in healing and medicine.

Sloan opens with aftermath of the Tucson shootings:

…Representative Giffords’s husband describes her as a “fighter,” and no doubt she is one. Whether her recovery has anything to do with a fighting spirit, however, is another matter entirely.

He jumps quickly through a history of the mind cure movement in America: from Phineas Quimby‘s concept of illness as a product of mistaken beliefs – to William James and New Thought ideas – to Norman Vincent Peale’s 1952 Power of Positive Thinking – to more current takes on the matter. These ideas, while popular, are not reality-based.

In his words:

But there’s no evidence to back up the idea that an upbeat attitude can prevent any illness or help someone recover from one more readily. On the contrary, a recently completed study* of nearly 60,000 people in Finland and Sweden who were followed for almost 30 years found no significant association between personality traits and the likelihood of developing or surviving cancer. Cancer doesn’t care if we’re good or bad, virtuous or vicious, compassionate or inconsiderate. Neither does heart disease or AIDS or any other illness or injury.

*Am. J. Epidemiol. (2010) 172 (4): 377-385

The Times printed several letters in response, most of which point to pseudo-evidence on the matter. All the more reason to bolster public education in the U.S., people won’t be persuaded by charismatic, wishful thinking about health care.

It happens I’m a fan of Joan Didion’s. I was so taken by the Year of Magical Thinking, in fact, I read it twice. Irrational responses, and hope, are normal, human responses to illness, disappointment and personal loss. But they’re not science.

Keep it straight.

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Why It’s a Good Idea to Get a Second Opinion, and Maybe a Third, But Rarely a Fourth

A few years ago I started writing a book on what it was like to be a cancer patient and an oncologist. This morning I came upon this section on second opinions:

Is it OK to get a second opinion?

Definitely. And there’s no need to be secretive about it, or to worry about hurting the doctor’s feelings. Second opinions are routine in fields like oncology, and are often covered by insurance. Be up-front: any decent oncologist can understand a cancer patient’s need to find a doctor who’s right for them, with whom they’re comfortable making important decisions. And in difficult cases, some specialists appreciate the chance to discuss the situation with another expert. So a second opinion can be beneficial to patients and physicians alike.

When things can get out of hand, though, is when patients start “doctor shopping.”  For example, I’ve cared for some patients with leukemia who’ve been to see over 10 oncologists. If you’re acutely sick, this sort of approach to illness can be counterproductive; it can delay needed therapy. From the physician’s perspective, it’s alienating; who wants to invest her time, intellectual effort and feelings for a patient who’s unlikely to follow up? Besides, oncology is the sort of field where each consulting doctor may have a distinct opinion. (If you see ten oncologists, you may get ten opinions…). Beyond a certain point, it may not help to get more input, but instead will cloud the issue.

As things stand, oncologists often discuss difficult cases with their colleagues. This happens at academic centers and hospitals, where tumor boards meet regularly to review the diagnosis and management of each cancer case, and informally in private practices, where physicians are likely to discuss certain aspects of treatment with their partners. For patients with very rare conditions, some oncologists will call experts in the field whom they may know through national meetings, journals, and other resources. What this means for patients is that through one consultant, they may be getting input of more than one expert, although they may not be aware.

So I recommend that patients with cancer, or any other serious or rare condition for that matter, get a second or third opinion about the best way to manage their illness. But at some point you’ve got to select one among those specialists, even if she’s not perfect, and stick with her at least for a while, until you have a good reason to switch or move on. Otherwise, you’re unlikely to have a doctor who cares when you’re really sick and, later, about your long-term well-being.

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I Feel Your Pain (not)

A tweet hit me on Sunday evening, from a stranger:

@Mibberz

I’m saddened by how many ADULTS can’t get their #rheum 2 understand the level of severity of their pain.What hope is there for my daughter?

I half-watched an on-line exchange about the issue, and then went about my family’s dinner preparations.

The message came from Amy Cunningham, who blogs about her daughter’s experience with juvenile rheumatoid arthritis and uveitis to the starting tune of Van Morrison’s “Brown Eyed Girl.” I couldn’t bear the tracks that followed, playing automatically and disjointedly in multiple browser windows, so I shut them off. But I kept on thinking about the girl’s pain, and the mother’s despair.

I wasn’t alone in that. Turns out that Rheumatoid Arthritis Warrior Kelly Young (@rawarrior) was all over the matter. She’s got a Facebook discussion going on the topic and a post today called Some Rheumatologists Don’t Understand How Much It Hurts.

The problem of doctors dismissing patients’ pain is very real. I know this from my own experiences, like when I fell on the icy sidewalk and broke my right arm in the midst of breast cancer treatment. My elbow became gigantically swollen because my platelets were low – a side effect of the chemo – and as a consequence of a non-steroidal anti-inflammatory agent I was taking for back pain. In the E.R. the doctors gave me enough pain meds only after I’d been made to feel humiliated by some of the staff. Another time, after a 10 hour back surgery in which the orthopedists cut a steel rod fused to my spine and otherwise manipulated that column of nerves, the anesthesiologists laughed in the recovery room, hinting that my pain was due to depression.

How wrong they were –

Medicine is a very macho profession. For the record – when I had my wisdom teeth removed, I had them all taken out at once and returned straight to work in the lab. I drew my own blood for experiments with lymphocytes, countless times. Once I inserted my own intravenous catheter, while pregnant. When my spine started to crumble, I had trouble acknowledging the pain for several years. I felt embarrassed, compromised by it. In the year before surgery, I had a CT myelogram (which involves a lumbar puncture), went home and prepared for a journal club presentation the very next day. And so on. Only later, when I could hardly walk, I mentioned my limitation because I needed to cut back on my time standing while on rounds at the hospital. Some colleagues were sympathetic, but others were less generous.

Being tough has its merits. But denying pain, or suggesting that people who complain about their symptoms are weak, is not helpful to anyone. Pain can be very real, and disabling.

I think the problem for some doctors is one of arrogance; they perceive pain as something that happens to “others” and not to them, as if it were a sign of weakness or a character flaw. For some, the denial of patients’ pain may be some kind of strange defense mechanism, a psychological device by which they distance themselves from those affected, and so it might seem like it couldn’t happen to someone like them.

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The Grinch That Almost Stole Christmas

Regular readers of this blog know that I’m not into rants. Complaining is rarely constructive, I know. But I spent the afternoon sorting through a 2-month stack of medical bills and correspondences related to those. Despite the fact that I consistently pay bills on time, we received threatening notices from local hospitals for payments they deemed late.

Three instances of avoidable hassle:

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A Patient’s Internal Conflict of Interest: to Mention a Symptom, or Not?

To complain or “be good” is an apparent dilemma for some patients with serious illness.

Yesterday I received an email from a close friend with advanced breast cancer. She’s got a lot of symptoms: her fatigue is so overwhelming she can’t do more than one activity each day. Yesterday, for example, she stayed home all day and did nothing because she was supposed to watch a hockey game in the evening with her teenage son and other family members. Her voice is weak, so much it’s hard to talk on the phone. She has difficulty writing, in the manual sense – meaning she can’t quite use her right arm and hand properly.

“It’s something I would never mention to the doctor because it is very subtle,” she wrote. “But it has not improved and if anything has worsened over time.”

There are more than a few possible medical explanations for why a person who’s receiving breast cancer therapy might not be able to use her right arm. But that’s not the point of today’s lesson. What’s noteworthy here is that the patient – an educated, thoughtful woman who’s in what should be the middle of her life and is trying as best she can to survive, doesn’t think these symptoms are worth mentioning.

Her doctor is an unusually caring and kind oncologist, not an intimidating sort. The problem here is the patient doesn’t want to bother her doctor with more details about how she’s been feeling, so it’s hard to fault the physician in this case. You might say in an ideal world the doctor or a nurse or someone would be screening each patient more fully, completely, asking them every question imaginable about every body part. Then again, what kind of patient would have time for all that at say, weekly treatments?  I don’t blame my friend, either, although I’ve encouraged her to speak up about her concerns.

As things stand, most data on medication toxicity is reported by physicians and not by patients directly, an information filtering system which may lessen our knowledge of drugs’ effects. This problem, formally considered a few months ago in a NEJM perspective – The Missing Voice of Patients in Drug-Safety Reporting, reflects some physicians’ tendencies to dismiss or minimize patients’ symptoms and, in the context of clinical trials, can have adverse consequences in terms of our understanding of treatment toxicities and, ultimately, clinical outcomes that might otherwise be improved.

Here’s a partial list of why some thoughtful, articulate patients might be reluctant to mention symptoms to their doctors:

1. Respect for the doctor – when the patient feels what he’s experiencing isn’t worth taking up a physician’s time, what I’d call the “time-worthy” problem;

2. Guilt – when a patient feels she shouldn’t complain about anything relatively minor, because she appreciates how lucky she is to be alive;

3. Worry – when a patient’s anxious or afraid the symptoms are a sign of the condition worsening, so she doesn’t mention them because she doesn’t want to hear about the possible explanations;

4. Apathy – when a patient stops caring about improving her circumstances during treatment, perhaps because she feels hopeless or that she’s doomed to experience unpleasant symptoms for the rest of her life;

5. Wanting to be perceived as “good” or “strong” – how can you complain about your handwriting if you want your physician (or spouse or lover or kids) to think you’re tough as nails?

I could go on with this list –

Why this matters is because many patients’ treatable symptoms go under-reported. And because if patients don’t tell their doctors what’s wrong, it’s unlikely their physicians will take note.

The purpose of medical care is to make people feel better. Patients, speak up!

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Progress at the Orthopedist’s Office

This morning I visited my spine surgeon for a check-up. What’s nice is the feeling I have about his office staff: they’re pleasant, gentle people who seem always eager in their work, and that helps. I got big hugs from his nurse, an office manager and biller. Even the x-ray technician seemed glad to assist me.

The orthopedist is a wonderful man whom I credit for my continued capacity to walk. All good –

For the first time in 12 years of visits to his office, the x-ray images of my bones were represented on a digital device, as opposed to old-fashioned, plane films clipped onto a light box. The surgeon was able to enlarge and examine more carefully an area of concern without my being exposed to additional rads. Even more fortunately, the fusion looks steady.

Once I arrange to get a copy of the digital image (a hassle with inexplicable, inexcusable high costs, as per hospital protocol), I can include that in my electronic personal health record (PHR), one of my planned projects for the year ahead.

Progress in health care is painstakingly slow. Today I’m encouraged.

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The Author Chooses Not to Go to the Emergency Room

Yesterday the author of ML wasn’t feeling too well. She had (and has) what’s probably a recurrent bout of diverticulitis, a condition when a little pouch stemming from the colon becomes inflamed and causes pain and fever. This can be serious if infection of the colon’s wall progresses, or catastrophic if the colon ruptures.

So I’m thankful, today, among other things that I’m feeling better with antibiotics, extra fluids by mouth and a good dose of rest. I’m glad, also, that I avoided the hospital for evaluation and treatment, as were de rigueur for this ailment 20 years ago. I’m lucky that, so far, I’m doing OK. And I’m reminded that illness is not a metaphor for anything.

Really it’s a crapshoot – hard to know sometimes when it’s worth going to the ER or staying home and enjoying Thanksgiving with your family, as I did.

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The Transportation Safety Authority Screens Travelers Inside and Out

I’ll be staying near my home in Manhattan this week. But if I did have plans to travel by airplane for the holiday, I think I’d be apprehensive about the new screening procedures implemented by the Transportation Safety Authority (TSA).

My concern is not so much with the scanners. (For a detailed review of these machines, I recommend this article in Popular Mechanics.) There are two types of scanners in current use: millimeter wave machines, which use radio-frequency waves to generate 3-D images, and back-scatter units which, by design, use low doses of x-rays to visualize what’s inside a person being scanned.

Rather, I’m worried about screening errors – false positive and false negative results, and about harms – physical and/or emotional, that patients and people with disability may experience during the screening process.

In the context of travelers’ screening, a false positive occurs when an examiner thinks he or she sees or feels something abnormal – say a weird expression on a passenger’s face or when an initial, low-threshold alarm goes off somewhere in the system – but the person isn’t carrying any dangerous or contraband items. That early, false positive signal puts the traveler through extra procedures, possible embarrassment and/or stress.

A false negative happens when a screener misses an explosive device or other harmful material. A good example is the so-called Christmas bomber, who last year got through airport security and boarded a plane with explosives effectively hidden in his underwear. In that December 2009 instance, the examiners failed to identify a passenger who carried a potentially lethal weapon. The TSA’s goal should be to minimize the number of false negative screening tests. That’s because we wouldn’t want someone to get through screening and board a plane while carrying a weapon.

The problem is that it’s easy to imagine an imperfectly-trained, inexperienced or just plain tired screener missing an irregularity in someone’s 3-D or other kind of whole-body image, especially in the context of a steady stream of passengers rushing to catch flights. The operators might miss weapons despite the visual “information” available, right in front of their eyes.

So I don’t object to the new technology, which should increase the accuracy of the screeners’ function. Ultimately, though, we can’t get around the fact that TSA employees are human and some will be nearing the end of their shift; the scanners can reduce but not eliminate these kinds of errors.

My second concern is with the potential harm to patients and people with disabilities. People may be harmed physically if, for example, a screener mishandles a pump or other device. There’s been a lot of attention to one recent report, that of a 61 year old man with a history of bladder cancer whose urostomy bag ruptured during an airport pat-down. The man described his urine spilling, and his feeling humiliated.

This is a very understandable reaction; as someone who has implants after mastectomies, and who carries a lot of internal metal hardware in her spine and elsewhere, with scars galore, I know how damaging can be a stranger’s scrutiny. Unlike doctors and nurses, most TSA employees are not accustomed to seeing colostomy bags, stumps and other disfigurements usually hidden under a person’s clothing. Even an accidental, unkind expression in a look-over, or an insensitive pat-down, could make a person feel pretty bad about their ailment.

Of course we don’t have to travel on airplanes. I don’t see this as a civil rights issue; I don’t think there’s a right to board a public vehicle without full screening if the TSA deems it’s necessary for public safety. Rather, I accept that an aspect of having illnesses is that sometimes you have to put up with things other people don’t experience.

What would help, clearly, is better sensitivity and training of TSA staff, as was considered in response to the urostomy incident. But given the huge volume of travelers and enormousness of our complicated transportation system, it seems unlikely we’ll get a satisfactory solution among all staff at all airports, at least not in time for Thanksgiving.

From the patient’s perspective, there are some practical points that might help. Amy Tenderich, at Diabetes Mine, offers tips for individuals with insulin pumps. Trisha Torrey has an interesting piece on her Patient Empowerment blog (where she argues that this is not an empowerment issue) and recommends a simple, common-sense approach, which is to arrive early at the airport. As for me, I carry cards indicating the dates of my surgeries and the nature of my hardware. Now, I’ll add to those a note from my doctor.

Meanwhile I hope the screeners will use their new equipment to do a better job at detecting people carrying weapons. And that those individuals who plan to boycott the scanners with a National Opt-Out Day tomorrow, will change their minds. The TSA employees have enough on their hands already, without a demonstration; it’s in everyone’s interest that the screening be effective, hopefully 100 percent, in this holiday season.

minor rev: 11/23, 2PM

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Hospital Fashion News from AARP and the Cleveland Clinic

The November AARP Bulletin highlights a promising development in hospital couture: trendsetter Diane von Furstenberg has designed new, unisex gowns ready for wearing in hospitals. The new gowns provide style and full coverage, with options for opening in front or back according to the bulletin. A trial is underway at the Cleveland Clinic.

Turns out Newsweek (which will soon marry Tina Brown’s Daily Beast, but I digress) ran a more detailed feature on the von Furstenberg hospital gowns last August. For those of you who missed the medical fashion story of last summer, here’s the scoop:

In May, 2010, the Cleveland Clinic held a Patient Experience Summit with a bifocal theme of “empathy and innovation.” There, on Day 2, the gowns were unveiled. Jeanne Ryan, a nurse who leads the redesign team, gave a presentation. In sum: the garments should be comfortable to wear, provide dignified coverage, allow ease of access for medical examination, and meet the needs of both ambulatory and bedbound patients. And cheap – the gowns cost about $9 each, according to Newsweek.

The magazine provides some history on hospital gown innovation:

… In 1999 the Hackensack University Medical Center in New Jersey redid its gowns with the help of designer Nicole Miller. In 2004 the Maine Medical Center in Portland introduced a floor-length option to accommodate the requests of female Muslim patients, and in 2009 the Robert Wood Johnson Foundation offered $236,110 to the College of Textiles to work on designing, producing, and marketing a new style of gown…

It’s not obvious to this reviewer what will be so much better with the new DvF wraps, but I’m encouraged by the Clinic’s efforts to get this right.

Initial feedback has been good, according to Cleveland.com. Some men find the print a bit feminine, so the team may change the color scheme. Also, because the fabric shrinks upon washing, the gowns may need lengthening.

The team painstakingly chose a fabric not too heavy so as to be warm or uncomfortable for patients lying in bed, but not so light as to be transparent. The gown incorporates the Cleveland Clinic’s diamond logo in a von Furstenberg signature, repetitive kind of pattern. There’s an elastic waistband, a wrap-around closure, and a wide V-neck. The gown is functional while preserving modesty. “Physicians can open the gown to expose the part they need to access without exposing the patient completely,” Ryan told Newsweek.

As someone who’s experienced one-size-fits-all including me and a basketball player, both, in pre-surgical outfits, and who’s spent weeks lying in hospital beds barely clad while all kinds of people came in and out without knocking, and who even in this year felt embarrassed in a revealing “gown” that was supposed to cover me as I walked down a hall to a room for an x-ray but didn’t, in front of other patients and sometimes former colleagues, I see this as definite progress, or at least a step in the right direction.

These gowns needn’t (and shouldn’t) be expensive, and I have some concerns about the V neck, which sounds too open for a post-mastectomy style and for frail patients who might catch cold, or pneumonia. (Will Diane design matching scarves?) But in general I think this is a favorable trend, or at least a start, that some hospitals are noticing how patients are treated – apart from the meds and procedures and strict nursing care – affects their experience and, potentially, their wellness.

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Eight Years

Today marks exactly eight years since Dr. L., the fine radiologist who may have saved my life, called to let me know about my breast cancer diagnosis.

With deep-felt thanks to my doctors, my friends, my family,

ES

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By |October 9th, 2010|Breast Cancer, from the author, Life, Life as a Patient|Comments Off on Eight Years|

Why I Went for My Screening Mammogram

Dear Readers,

This week marks eight years, exactly, since I had an abnormal mammogram that led to my breast cancer diagnosis. I was 42 years old, and lucky because the excellent radiologist who discovered my tumor was a super-specialist in breast imaging, the kind of radiologist who spends her work-time analyzing mammograms, performing breast sonograms and taking biopsies of suspicious lesions. She doesn’t often look at hip films or ordinary x-rays. She just does mammograms, mammograms and mammograms, and sometimes additional tests to evaluate abnormalities she detects in those. She knew her stuff.

I was afraid to get a mammogram because I didn’t want to learn I had cancer. Back then, my breasts were so glandular it was hard for me, an oncologist, to discern what might be a pathological lump, or not. I feared having a “false positive,” and undergoing multiple tests to evaluate abnormal images that would turn out to be nothing but big-bill inducing benign lesions.

Really I was hesitant in visiting her office. I didn’t have time for cancer, because I was in pain from a crumbling spine and needed to get my back fixed before even opening up the possibility of additional medical problems. I wanted to work as much as I could then, before and after that big reconstructive spinal surgery, so that I might continue research and publish more papers. Besides, my sons were young then – ages 8 and 10 – and I didn’t want to not be able to make dinner because I was throwing up, or die.

Not getting a mammogram was a way of not finding out. The shoemaker’s kids don’t get shoes. An oncologist doesn’t get a mammogram…

My general internist, whom I trusted, insisted that I go for screening. “You’re over forty, you know,” she said. But I had no family history of the disease, then – this has since changed, and I didn’t consider myself at increased risk. Ultimately I went for the mammogram because I knew it was the responsible thing to do, to take care of myself.

When I had the mammogram, and the sono to evaluate an abnormality, and the core needle biopsies in the next week, I wasn’t afraid so much as I was annoyed by all the inconvenience. “Who has time to be a patient?” was my attitude. I came to each doctor’s appointment armed with research articles and colleagues’ manuscripts to review. I had meetings to attend, and responsibilities, and participated actively in a typical two-career family kind of up-and-out-early way of raising our sons.

All of that is behind me now, as is the chemo,  hair loss, some incidental fractures, surgeries, generalized fatigue and sad times that followed. How lucky I am that I went that day. There is no doubt in my mind.

Next year, approximately 45,000 women in the U.S. will die of metastatic breast cancer. Why I advocate for screening mammograms is because I know that a significant fraction of those advanced cases, perhaps half or more, could be prevented by early detection. That benefit would be a boon to the public health: perhaps as many as 20,000 – 30,000 women spared per year from morbidity, suffering and mortality of metastatic breast cancer, which is currently an incurable, costly disease.

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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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Another Take On An Ordinary Day

A few weeks ago, on August 1, I threw out the concept of living life every day as if it’s Shark Week. The line, delivered by 30 Rock‘s Tracy Morgan in that show’s first season, has stuck with and puzzled me for years.

Then I came upon a striking post called Live Each Day Like There’s a Lot of Them Left, dated August 2. Jen Singer, a blogger with two sons and a history of lymphoma, expresses the considered notion that maybe the best thing to do after cancer is to live, essentially, as you would do otherwise, except with a bit of added balance.

She writes:

… I — the one who has been so close to the end of life – am supposed to tell you to treat each day as though it’s your last. Except, if it were my last, I certainly wouldn’t be tanking up my mini-van for the rest of the week’s carpools…

Rather, I suggest that you treat every day as though you’ve got a whole lot of them left, precisely because you don’t really know if you do. Go about the everyday, do the drop-offs, get out the knots. Clean the house. Go ahead and get through the stuff that fills your To-Do list…Slog, if you must, because that’s perfectly okay…

Still, every now and then, don’t forget to turn up the radio and listen…

Her point, I think, is that we all have to move on with our lives if we can. It’s the nitty-gritty, mundane activities that keep families on track may also keep us sane, safe and sound. Cancer can be liberating, but that doesn’t necessarily mean we should exploit that as license to escape from responsibilities.

The pressure to “treasure each moment” can be counterproductive. To live life as usual is a challenge of another sort, important for the normal development of our kids and ourselves.

I like this perspective.

Like Jen, I take pleasure in the ordinary stuff – cooking, helping my family and yes, checking off items on the list of things I’ve been meaning to do for years. It’s a long list, and I’ve lots to take care of.

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Eye Care

On Friday I had a slightly, subtly dehumanizing experience at the eye doctor. It’s no big deal, really, almost not worth mentioning –

It was an entirely ordinary set of events that triggered this near-rant from this determinately positive blogger. But maybe the commonality of it – the blandness of what happened when I visited the doctor the other day – typifies what’s as a tragedy in modern health care: the loss of caring.

eyeglasses on a table (Wikimedia Commons)

How it went was like this:

That morning I raced (or, rather, walked quickly – but dangerously quickly for a woman with poor balance and limited gait) to catch the bus to take the train to reach the optometrist’s office on time. And I did.

The office was crowded but not full. A receptionist sat behind a partly glass-enclosed counter with desks, fax machines and filing cabinets and other workers.

“Name, please” she asked me.

I told the woman my name.

She nodded. “Take a seat, someone will be right with you.”

I waited just over half an hour, during which time I had the opportunity to look around and listen.  A man, who said he’d undergone Lasik surgery the day prior was “seeing great” as he chatted enthusiastically with a couple to my left, one half of which was contemplating the procedure.

“It’s a miracle,” he said. “I’m having each done separately, one at a time.”

After a while I returned to the receptionist’s window and noticed a sign having to do with Botox injections and information on a doctor who might provide those.

My mind wandered… I never knew that eye doctors do Botox. Then again, maybe they don’t…Perhaps this office maintains a reciprocal relationship with an office that provides those, where the staff posts notices about Lasik surgery. Either way, the sign is nothing more than a business strategy, which is fair enough if you believe that health care can or should be run as a money-making enterprise. (I don’t.)

Back to my optometrist, who was running late (OK, usually forgivable, human):

How I first met this capable woman was through the long-ago care of my semi-retired ophthalmologist, a medical doctor (MD) who provided start-to-finish eye examinations and might, if you ever needed it, perform eye surgery. I trusted him and always felt good about visiting his office.

Some time ago he expanded his practice, taking in some less-established doctors and optometrists. The idea, I imagine, was to have a doctor of optometry (DO) carefully perform the initial eye exams, patiently fit vision-impaired people with just the right prescriptions for their lenses and, finally, refer any questions or concerns to the ophthalmologist in the same office. In this sort of setting, he could spend more of his time helping, and doing procedures, for patients with serious eye problems like glaucoma.

I was happy with the system for most of 10 years. I genuinely liked the optometrist, and still do – she did a terrific job evaluating my vision and optimizing my lenses. Around the time I had breast cancer, bald and walking with a needed cane, she looked into my eyes with extra care. She was sympathetic and spent an unusual amount of time making sure that my glasses would be all right, if nothing else.

The problem – what I’d diagnose as a change in the practice’s character – manifest a few years ago after the group moved to a new office space where there seems to be a lot more traffic. The carpeting on the floors, once fresh-appearing, is no longer. The waiting area, formerly quiet, has a TV broadcasting CNN. But I don’t care much about the floors or media selection.

What bugs me is that the office has expanded and become so systematized that when I go there I don’t feel like I’m visiting a doctor, the kind of professional who sincerely cares about my health. Instead I feel like a commodity, which I suppose I am.

Back to the visit:

As has happened before, a technician called my name  and asked me to come with him, so I did. He was young and unfamiliar. He told me his first name and, without further explanation, indicated where I should sit while he used a machine to take pictures of each retina, the light-receiving membranous surface at the back of the eyes. Next, he asked me to follow him into a small room where he proceeded to open my chart and question me, sketchily, about my recent medical history.

I wasn’t thrilled about sharing, but went along up until a point. Then, when he began to perform my eye evaluation – the exact sort of work that the optometrist used to spend her time with me doing, I asked him what was going on. Where was she?

“She doesn’t do this part any more. It’s been like that for a while. Now please, can you read the letters in the first row…”

So now the optometrist, who had for years assisted the ophthalmologist, has an assistant who would evaluate my vision instead. This saddened me, first and selfishly because I’d spent the better part of my morning going to see her so that she could check my eyes and write another ideal prescription I could rely on, and now I couldn’t count on that small part of my health care going smoothly ever again.

What’s more – and the bigger picture – is that she no longer has time for me and my eye glasses. I see this simultaneously as good and bad:

Good – I suppose, because we don’t really need people with MDs, and probably not even with DOs, for routine examinations and procedures that could be handled by someone with less training and who is, therefore, less valuable in our limited health care system.

Bad – It happens that the particular technician who started to check my eyesight did a poor job until I stopped him at that. The machine he used to project letters into a mirror shook so much that the small blurry letters in the lowest row wobbled clearly.

More generally – it’s bad because the time I once valued with my optometrist, as previously with the ophthalmologist, is gone. I guess it wasn’t sufficiently worthwhile for them to keep the relationship going as it was. No more annual, while they’re flipping the glass circles, questions like “how are your kids?” or “how’s your summer going” or a generous, once-credible “how are you feeling?”

My visit was almost reduced to a series of standard interactions with a technician of unknown credentials who I don’t expect to ever see again. I intercepted that, this time, but this scenario will surely recur, overwhelmingly, as health care delivery becomes more checklist-based and efficiency-minded.

—–

Some definitions – for those of you who aren’t completely confident in your knowledge of the distinctions among eye care specialists:

An ophthalmologist is a medical doctor (MD) who specializes in eye diseases and might perform eye surgery.

An optometrist is a professional who’s earned a doctor of optometry (DO). Usually this requires four years of post-graduate education that covers eye diseases, pharmacology, anatomy and more. Optometrists are trained, extensively, to examine the eyes, give prescriptions and perform certain procedures.

An optician is someone, typically a licensed professional, who helps people get the eye care they need and may prescribe eye glasses or contact lenses.

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Today’s Calls

This is an easy post with a simple message. Maybe it’ll even help some people.

Earlier today, in the midst of a deep water exercise class, I remembered that I needed to  call my eye doctor before the weekend. You see, I’ve been meaning to get a new pair of glasses and it doesn’t make sense to get those without a current prescription. Then I realized that I hadn’t been to see her in two years. Time flies –

Like many people, I’ve been carrying around a mental stack of offices I’ve been meaning to call. So instead of taking care of some serious writing for a book proposal, that I really need to do, I ran the list:

  • internist
  • ophthalmologist
  • dermatologist
  • physical therapist
  • gynecologist
  • oncologist
  • orthopedist
  • other appointments (for your kids, spouse?, partner, whoever depends on you …)

Done!

It turns out that late summer is a great time to call medical offices for routine appointments. (Sorry secretaries, I know the doctor’s vacation is when you tidy up, even electronic paperwork and filing.) But seriously, someone answered the phone promptly or readily returned my call today. What’s more, I beat the post-Labor Day rush for adult doctors’ visits.

Calling is, unfortunately, too often an obstacle. But it’s no excuse.

(Not having insurance is another story, of course.)

Just do it!

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