What the Dermatologist Did Right

Kudos to my newest doctor, a dermatologist whom I met yesterday for evaluation of a small, benign-appearing mole I recently noted on my right leg. What she did right:

1. She saw me promptly, at the time of my scheduled appointment.

(Thank you, you seem to value my time, as I do yours.)

2. In her initial clipboard-bound paperwork, along with the usual forms about my history (always with insufficient space for my case and, unfortunately, still non-electronic) she asked not only for emergency contact information, a standard, but for the name and relationship of someone besides me – such as a family member or close friend – with whom she might discuss my condition, if I permitted.

(Thank you for asking this and really, I’d prefer that you not speak with my parents about my results. I’ll be turning 50 next month.)

3. In the same short set of greeting paperwork, she didn’t just ask for my phone numbers and other contact information. She took this to another level and asked if it’s OK to leave a message on my home’s answering machine.

(Thank you again, for asking. I have teenage sons and don’t particularly want them hearing about my appointments or biopsy results before I get the message.)

4. Her assistant walked me into a room and told me to stay dressed. “The doctor likes to talk to people with their clothes on, before they put on the gown,” she explained.

(This was really terrific, and I hadn’t even yet met the doctor!)

I wasn’t disappointed: when Dr. G. entered the room, she was professional, considerate and thorough. I got the feeling she works conscientiously and carefully. And that she cares.

——

I can’t help but reflect on what a difference these sorts of details can make in a patient’s experience. How many times had I been in an orthopedist’s office for the first time, or at a different dermatologist’s, pleading with a nurse or technician that I might keep my clothes on until I’ve met the doctor and we’ve spoken.

It’s inefficient, I suppose, for doctors to meet patients in a small exam room, to exit and then re-enter after they’ve changed into a gown. But it’s humiliating, I feel, for an adult woman or for any person to meet the physician, especially for the first time, when they’re not wearing clothes.

A dermatologist, or any doctor for that matter, can’t necessarily take away the condition you have, which may or may not be serious. They may not have an easy remedy. But if they treat you with courtesy and respect, that makes it easier to cope with any situation.

Fortunately the lesions Dr. G. removed are likely nothing more than benign moles with Greek-derived names. One was a bit vascular. The lesion bled once she snipped it off, and so I can’t swim for a few days until the wound heals. But otherwise I’m doing fine.

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The Traveler’s Dilemna

Yesterday my husband and I took a short tour of Jericho, one of the world’s most ancient cities. I’d been there once before, sometime around 1972. My firmest memory of the place, stronger than my recollection of the ruins, is of drinking warm soda straight from the bottle with a plastic straw. It was hot then, like yesterday.

While we poked around the remnants of a curved, tall stone tower said to stem from the Natufian period (~ 9,000 BCE), our driver took a seat in a nearby cafe. He ordered a pitcher of lemonade. “It’s the best here,” he said as we reached the shaded table. He poured some of the slightly-sweetened, fresh juice into each of our glasses.

This was a familiar dilemna: I didn’t want to drink the lemonade, likely diluted with local water, but I didn’t want to insult our driver or the restaurant owner. So I compromised, figuring that dose matters. I took a small sip and thanked our host.

Next I scanned the menu. Most of what’s served at this restaurant is grilled meat. But it was lunchtime, and all we wanted was a light meal. In choosing what to eat, I considered how my mom – a retired travel agent and life-long advisor on these sorts of issues – taught me to select foods when traveling:

1. Avoid hot food buffets. These tend to be filled with other travelers’ germs and old, sometimes “recycled” foods and are typically kept at only lukewarm temperature – a perfect breeding ground for bacteria.

2. “Heat is good.” This refrain, drilled deep into my brain by my mom, years ago, steers me toward steaming soups and freshly-cooked, hot dishes. (A high temperature renders most germs inert; the hotter and longer the cooking, the better in this respect.)

3. Salad can make you sick. Lettuce, washed with impure water, and unpeeled vegetables can be jam-packed with disease-causing bacteria.

4. Pick fruits that can be peeled, like bananas or oranges. Vegetables are safest when cooked.

5. Choose popular restaurants. A place that’s doing a brisk business is less likely to serve food that’s past-prime.

Some risk is inherent in traveling, and I have to admit I’ve made some mistakes along the way. The place yesterday was clean, breezy and seemingly frequented by our driver and other tourists. So I enjoyed a fresh falafel sandwich, with bits of peeled tomato and cucumber inside (dicey, I admit, as the peeling utensils may not have been clean) and a bottle of mineral water. It was tasty enough, and got me through the day.

So far so good –

I guess it’s a matter of judgment about the place you’re in, and some luck, too.

We’ll fly home, late tomorrow.

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Suggestions to Reduce Errors in Breast Cancer Pathology

A prominent article in yesterday’s New York Times considers some troubling problems regarding inaccuracy in breast cancer diagnosis and pathology. The main point is that some women get needless, disfiguring and toxic treatments after being told they have breast cancer when, it turns out, their condition was benign.

My main take on this situation – which doesn’t just apply to breast cancer – is that, whenever possible, patients should get a second opinion on biopsy results before undergoing major treatment. The costs of a second pathology review is sometimes covered by insurance, but sometimes it’s not; either way, that’s money well-spent, especially if the opinion is rendered by an appropriately-credentialed, expert pathologist who works in a state-of-the-art facility.

From the doctor’s perspective there’s responsibility, too. Surgeons shouldn’t lop off a woman’s breast without knowing that the pathology is real. Well-trained oncologists know they’re supposed to review the pathology, to make sure the diagnosis is true, before giving chemo. The Times story indicates that the Cancer Treatment Centers of America has a specific policy in this regard, that doctors there must review the pathology for patients who are new to their system. This wise policy, common in some hospitals and tumor boards such as where I practiced, makes it less likely that oncologists or other doctors will give inappropriate treatment.

From an administrative standpoint, there could be better regulation to assure quality. Pathologists who are employed, busy evaluating tumor specimens without supervision, should be board-certified and required to be up-to-date in the specialized fields of their practice. And laboratories (as opposed to pathologists who work there) should be closely monitored because pathology errors can arise from faulty stains, use of poor-quality or old reagents, incorrect calibration of a machine, lack of appropriate “controls” for each batch of cases evaluated, etc.

A related story appeared earlier this year, also in the Times, on the variability of pathology reports. That article reported on how different pathology labs provide disparate results on whether a breast tumor has estrogen and progesterone receptors in the malignant cells, and whether the malignant cells express Her2 – the target of Herceptin – or not. The lack of agreement among pathologists renders treatment decisions difficult. The piece focused on a physician who couldn’t decide if she should take Herceptin or not, because she received conflicting reports about her tumor.

Getting the diagnosis right underlies many cancer care problems and undue costs. If I were an insurance company executive, I’d recommend that my firm cover the costs of a second pathology opinion in all cases. It’s far less costly to find out that a “tumor” is not really malignant than to pay for surgery, chemotherapy and radiation that’s not needed.

Better still, I’d insist that biopsy specimens be evaluated by pathologists who are trained in current methods and who work in trust-worthy laboratories.

Such a policy would reduce false positives in cancer diagnosis, and would thereby reduce the toxicity and costs of unwarranted cancer treatments. With better diagnostic facilities, those patients who do have cancer would not be so afraid to undergo the treatments they really need, because they’d be confident that they and their doctors were making decisions based on reliable information.

—–

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Staying Healthy in Hot Summer Travel

Hiking, or even just walking, in the hot summer heat to see ancient ruins, national monuments or spectacular vistas can sap the energy of healthy people. For someone who’s got a health issue – like chronic lung disease, reduced heart function or anemia – or anyone who’s pregnant, elderly or just frail, summer travel can knock you out in the wrong sort of way.

Slowing down is not something that comes naturally to me. I’m always eager in sightseeing and keen on keeping up with my teenage sons; learning to pace myself and insisting that they go ahead uphill or down into a cave, without me, has not been easy for any of us. But after a few episodes of stumbling, lightheadedness and exhaustion so severe that I had to cut out of museums I’d traveled across the world to see, I’ve adapted a prophylactic, healthy approach to summer visits to remote places:

1. Don’t plan too much for any one day.

This means you may have to forfeit some activities and sites you’d like to see. Just as, while vacationing, some parents plan for “down-time” for their kids by a pool or beach, adults should set aside time each day for resting in a shady place.

2. Plan visits to hot sites in the early morning or evening.

Museums can provide terrific respite from the midday heat. Theaters, shopping malls and modern hotels are all fine places to wait out the sun’s peak.

3. Drink lots of water.

Depending on where you are traveling, this may require that you buy bottled water. Fake mineral water is rare, but you have to watch carefully for it by checking that the bottle cap is properly fastened.

(The movie Slumdog Millionaire includes an instructive and unforgettable take on this tourist’s nightmare; one scene depicts children systematically sealing plastic caps onto bottles of tap water in an unnamed, Mumbai restaurant. The film’s medical lesson: try to avoid buying beverages in places that seem untrustworthy.)

Keep in mind, restaurants usually wash and rinse the glasses with tap water. So if the tap water’s no good, drink your beverage straight from the bottle. And, if that’s the situation, don’t put dirty hands or fingers at the bottle’s opening because that’s where you’ll put your mouth.

4. Skip the ice if you’re not sure the water’s safe to drink.

If water or another beverage is served with ice in a glass, send it back. At some risk of seeming pedantic, I’ll repeat what my mom taught us while traveling: tap water is not safe to drink just because a hotel or restaurant proprietor says so. Rather, trust in your good judgment and common sense.

5. Bring tissues to handle bathroom doors.

Drinking fluids may lead to increased urination, which means you may find yourself in unclean restrooms that may not even have running water. Here, the most important thing is to avoid touching the toilet or any sink-handles or knobs with your hands.

6. Take time to sit and rest periodically.

Walking and standing for long stretches can cause back pain and fatigue. So even in a museum, typically a comfortable kind of place, whenever I spot a bench I’ll sit there for a few minutes. While out in a city, I might stop and buy a cup of tea at an inexpensive restaurant just for the purpose of sitting, or get on the bus just for the opportunity to take a seat.

—-

I find that if I pace myself, which means admitting that I can’t necessarily do all I’d like as fast as I want, I can see the world!

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Avoiding Blood Clots During Long-Distance Travel

A few years ago my family took a trip to China. Even before we arrived, I learned something about an unfamiliar health care culture. What I observed en route was that many of the older passengers on that long flight to Beijing were getting up from their seats and stretching. Not just once, but regularly and systematically – they were doing slow motion, isometric calisthenics on the airplane.

I took notice of their behavior first because it seemed a simple and inexpensive, albeit strange example of preventive medicine. Second, as a hematologist who cared for patients with blood clots upon traveling, I pondered the risks and benefits of their on-board exercises. Third, as a patient who’s had a blood clot, or deep venous thrombosis (DVT), I thought maybe I should follow their example.

Thrombophlebitis – the old term for DVT – happens when a vein (as opposed to an artery) gets clogged with platelets and fibrous proteins. These tend to develop in people who are immobilized – after a hip or spine surgery, for example, or during long, cramped trips in airplanes with little legroom. For this reason, long-distance travel (in any sort of vehicle – it could be a car or bus or a train) is a major risk factor.

Dehydration and some medications can exacerbate the risk of developing blood clots during travel, as can having some kinds of cancer. (Pancreatic cancer, prostate, ovarian cancer and other tumors in the pelvis are particularly troublesome in this regard.) Some people inherit an increased tendency to develop clots; in general these can be evaluated by blood tests.

Most often DVTs arise in the legs but sometimes these also occur in the arms and other body parts. The condition can cause discomfort, pain, redness and swelling of an affected limb. These clots are most dangerous, and potentially lethal, if they spread to the lung – what’s called a pulmonary embolism. So there’s good reason to avoid these as best you can.

Here’s a list of some precautions to avoid blood clots when traveling:

1. Try to get an aisle seat. This strategy allows you to periodically stretch your legs into the aisle, and to get up without disturbing others.

2. While seated, move your feet and legs around as much as circumstances permit, and at least every hour or so. If you absolutely must remain seated, flex your feet 10 times, and stretch your legs as best you can, bending and extending the knees, one at a time, in any available direction, 10 times each. Another exercise is to raise each foot and swivel it, pivoting the toes from side to side while keeping the ankle relatively still.

3. Get up periodically and walk, every hour or two if permitted. (This means getting less sleep if you’re lucky enough to fall asleep, but I think the trade-off is worth it: being tired upon arrival is unpleasant; getting a blood clot is worse than that.)

If you’re on an airplane – once you’re up and out of your seat, seek out a place near the kitchen, restroom or elsewhere where you might stand. Then, hold onto the wall or the back of a chair, lift and stretch each of your legs repeatedly and then march in place: one knee up, then the next for two minutes or so, as conditions (and flight attendants) allow.

4. Stay well-hydrated by drinking ample water. Alcohol is a diuretic and should be avoided or minimized; caffeine too. Of course, for some travelers with weak bladders drinking lots of fluids can create a need for frequent bathroom trips. But this isn’t such a bad thing if you’re at risk for DVT, because this gets you up and out of your seat.

5. Dress sensibly – avoid tight clothing. (Some doctors recommend TED (thrombo-embolic Deterrent) or other compression stockings for patients with DVTs who travel, but I find these graduated compression nylons so uncomfortable that they reduce mobility, besides the capacity to bend and flex my ankles and knees.)

For women: avoid “knee-high” stockings with compression bands pressing just below the knees. These are a set-up for reduced blood flow from the lower legs to the larger, central veins.

6. Talk to your doctor if you’re concerned about DVT and are planning a trip. Ask about what precautions you might take in the context of your specific medical circumstances. Some people use heparin, a blood-thinner, or other medications while traveling to reduce their risk. Keep in mind that for most people, the risk of forming a significant blood clot is low.

—–

The trip to China was fabulous, well worth the distance.

More on travel next week –

ES

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ML Travel Advisory

Today I am posting from Jerusalem, Israel, where I’ll be staying for just over two weeks.

As some ML readers know, my mom is a retired travel agent and my dad a retired physician. Our vacations were always fantastic and fun, besides an informational bonanza of sorts: we’d take in some geography, history, art and language – even in English, we’d pick up new words during competitive games of Scrabble.

Some of the lessons I learned were medical. Exotic cuisines, sun-lit visits to ancient ruins and long airplane flights – these all provide health challenges, especially to the elderly and others with chronic illnesses. So I thought I’d take these weeks as an opportunity to review some of the ways I’ve learned to take care of myself while exploring places far from home.

Because I’m a hematologist who’s cared for people who’ve had deep venous thrombosis and as a patient who’s had one, the topic of avoiding blood clots seems like a good place to start (next post). Later, I’ll cover is how I manage with water and hygiene in places without modern plumbing, and how I choose among foods in foreign places.

I hope these tips may be helpful to some readers wherever they venture.

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By |July 13th, 2010|Categories: Travel||1 Comment

On Sergey’s Search (for a Cure for Parkinson’s Disease)

This week I brushed up on Parkinson’s disease. What drew me into this mini-review is an informative article, “Sergey’s Search,” that appeared in the July (print) issue of Wired and is now available on-line. The feature, by Thomas Goetz, offers insight on what it’s like to know that you’ve got a genetic disposition to Parkinson’s, details on some enzymes implicated in the illness and, further, considers what might be done to help future patients.

I recommend this article to any of my readers who are interested in genetics, Parkinson’s and/or what some even consider as a new era for health-related research.

There’s a lot to take in –

The Wired story starts with Google co-founder Sergey Brin. A Moscow native and, more recently, a California swimmer, Brin’s got his reasons for concern. He’s got a strong family history, for one thing: the illness has affected both his mother and aunt. It turns out Brin has a genetic disposition to develop the condition because he shares the disease-associated G2019S mutation with his mom. As Goetz explains, this alteration in the DNA segment of the gene encoding LRRK2, a leucine-rich repeat kinase, involves a single-nucleotide switch of an adenine for a guanine.

(I’ll add this, just in case you’re interested: the gene encoding LRRK2, or dardarin, resides at human 12q12 – that’s the long arm of chromosome 12. The G2019S nomenclature indicates that the mutation results in a change at the 2019th amino acid position along the protein’s encoded structure, so that a glycine, normally present, is replaced by a serine molecule at that spot. A fascinating tidbit, news to me today, is that when the gene was first cloned in 2004 the researchers, who’d studied several affected families of Basque origin, called it dardarin, derived from the Basque word dardara, meaning tremor.)

The G2019S mutation is relatively common among Ashkenazi Jews. Still, not all of those who carry the mutation develop the disease, and not all who have the disease have this particular mutation. Other genetic variants have been identified, and it’s not clear exactly how these wreak havoc with LRRK2′s function. Enzymes like LRRK2, a kinase, usually transfer ATP molecules from one protein to another. The presumption is that in Parkinson’s, abnormalities in this enzyme’s function – whether they’re caused by this particular mutation or another – somehow lead to loss of dopamine-producing cells in the brain.

Back to Sergey’s story -

“Brin didn’t panic,” Goetz reports (a point I’d emphasize too). Rather, he was reassured by his mother’s experience and high level of functioning with the disease. She still goes skiing (among other things one’s mother might do), he reasons.

What Brin is doing, along the lines of Goetz’s Decision Tree approach, is cutting his risk as best he can. He exercises regularly, doesn’t smoke, and funds research.

Like other rock star informaticists before him (think of Netscape founder James H. Clarke, who launched Healtheon and Steve Case, who started Revolution Health – these are my examples), Brin is struck by the slow pace of medical investigation:

“Generally the pace of medical research is glacial compared to what I’m used to in the Internet,” Brin says. “We could be looking lots of places and collecting lots of information. And if we see a pattern, that could lead somewhere.”

If only medical research could be more like Google…

Some clinical background:

Parkinson’s, a progressive and often debilitating neurological condition, affects a half million or so people in the U.S. As a practicing as a physician, I cared for many patients who had this illness. Although I would see them for other reasons, it was hard not to notice, and know, the characteristic tremor, rigidity and shuffling walk of those affected. The onset of symptoms is usually insidious, slow and unnerving.

As Goetz indicates, most of what doctors understand about Parkinson’s comes from observing patients in the clinic. Illness emerges, it’s thought, as the number of dopamine-producing cells in the brain diminishes. Dopamine is a neurotransmitter, a molecule that transmits messages between cells or groups of cells within the nervous system. Since around 1967, when the drug Levodopa was first marketed, doctors have prescribed this and other pills for people who have Parkinson’s. While these meds can ameliorate symptoms, these don’t reverse the unstoppable deterioration of body and, ultimately, the mind.

One problem with Parkinson’s research and treatment is that once the disease becomes evident, it’s hard – probably too late – to reverse the loss of dopamine-producing cells. Most people don’t develop symptoms until dopamine production is around 20 percent of normal levels. Now, with the advent of genetic markers and potential to “catch” this disease early on, there’s an opportunity for early intervention.

One promising area for Parkinson’s research:

LRRK2 is a kinase, a kind of enzyme that’s over-active in some cancers. Already, pharmaceutical companies have developed specific kinase inhibitors; a dozen or so are already FDA-approved for treatment of particular cancers, and many more are in the pipeline.

What excites me, in all of this, is the possibility that these drugs might be effective in patients with Parkinson’s disease. And because the same enzyme – LRRK2, or dardarin – is implicated in cases without the particular G2019S mutation, it may be that these drugs would work even in cases that lack this particular genetic feature. (There are examples in oncology, in terms of tumor genetics and responsiveness to targeted drugs, that would support this contention, but that’s just theory for now.) The bottom line, as I see it, is that these new drugs should be carefully tested in clinical trials.

Sergey’s view:

One of the key ideas in Goetz’s piece has to do what he considers and may well be a revolutionary approach to medical research.

…Brin is after a different kind of science altogether. Most Parkinson’s research, like much of medical research, relies on the classic scientific method: hypothesis, analysis, peer review, publication. Brin proposes a different approach, one driven by computational muscle and staggeringly large data sets. It’s a method that draws on his algorithmic sensibility—and Google’s storied faith in computing power…

In what may indeed be a “fourth paradigm” of science, as attributed to the late computer scientist Jim Gray, there’s an inevitable evolution away from hypothesis and toward patterns.

As I understand it, Brin seeks to invert the traditional scientific method by applying Google-size data-mining power to massive and very imperfect data sets in health. Already, he and his colleagues have accomplished this by Google’s Flu Trends, which several years ago beat the CDC to an epidemic’s discovery by two weeks.

You should read this article for yourself, as I’m afraid I can’t adequately describe the potential powers of computational health and science analyses that might be applied to well, pretty much everything in medicine. This goes well beyond a new approach to finding a cure for Parkinson’s disease.

This story, largely based in genomics and computational advances, reflects the power of the human mind, how the gifted son of two mathematicians who fell into a particular medical situation, can use his brains, intellectual and financial resources, and creativity, to at least try to make a difference.

I hope he’s successful!

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About the Concert

I had the pleasure of seeing and hearing Carole King and James Taylor in concert on Wednesday night at Madison Square Garden. Some highlights – Carole King picking up the guitar for a dueling rendition of Smack Water Jack, a surprise and rollicking re-take of Little Eva’s Locomotion, and her dancing like a happy teenager to I Feel the Earth Move. Taylor played well and graciously, with wit to boot.

They made me feel like life gets better with age. Who knows?

Madison Square Garden, June 30, 2010

This Sunday is July 4, Independence Day. Enjoy the holiday and long weekend!

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Some Notes after Grand Rounds, and Questions for Medical Blogs and the Internet

Earlier this week I had the opportunity to host med-blog Grand Rounds. This honor – or assignment, depending on your perspective – came just in time for the new academic year.

(That would be today, July 10, 2010 – welcome new students! and interns! and “mature” doctors without supervision!)

Coincidentally, or not, over the past year I’ve made it my business to study what some might call on-line medicine. Since completing my J-School (that would be J for journalism, just to be clear) degree, I’ve spent much of my time reading, clicking and otherwise navigating through the medical blogosphere and greater Web.

So far I’ve tried to examine what’s out there – websites, on-line newspapers, magazines, blogs, advertisements, academic medical journals, Twitter, videos and more – as best I can, to understand how people find and share information having to do with health. What I’ve learned, largely confirming what I thought previously, is that the Internet as a source of medical information is a complex, evolving, powerful and largely unregulated instrument.

Some key questions for the future:

1. What is a blog and how might that be distinguished from, say, a website with ads and text, or from a newspaper or multimedia conglomerate with an engaging on-line section?

2. How might a reader identify a medical blog or health-related website? Is there a reason to separate these kinds of Internet domains from those concentrating on wellness, health care delivery, science, ethics or policy issues?

3. How much value, if any, should we assign to articles for which the author is unknown?

4. The issue of conflict of interest (COI) is slowly working its way into academic medical journals and continuing medical education programs for physicians. But on-line there’s essentially no regulation and it would be hard to implement any disclosure requirements even if there were. How the public might be informed of COI regarding on-line content – whether that’s provided by individual bloggers, newspaper-employed journalists, med-tech companies or pharmaceutical corporations – seems a critical issue for the future.

Any thoughts?

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