Get Cancer. Lose Your Job?

 

Let’s start with this fact: If you are employed and get a breast cancer diagnosis, it’s less likely you’ll be working at your job four years later. A newly-published study of women in Los Angeles and Detroit found that among women less than 65 years with limited-stage breast cancer, 76 percent had a paying job at the time of their diagnosis. Based on follow-up surveys of the same women four years later, the number employed was reduced by 30 percent. That’s a huge drop.

The study was just published on-line in the Cancer Journal. The authors, including a corresponding and lead author in a department of radiation oncology at the University of Michigan, make a point in the paper’s title, Impact of Adjuvant Chemotherapy on Long-Term Employment of Survivors of Early-Stage Breast Cancer, that chemotherapy may be to blame. And there’s some truth in this. Chemotherapy causes fatigue and, occasionally lasting problems such as neuropathy, heart weakness and chemobrain that might limit or impair a person’s capacity to work effectively.

On the other hand, the likelihood of developing many of those chemo-related effects depend on the dose and regimen selected. Radiation, often, causes fatigue, and – when administered to the chest, can cause premature heart disease (atherosclerosis) and lung problems, besides secondary tumors as a late consequence of treatment. It happens, though, that hormonal treatments, like Tamoxifen, can cause chemobrain too.

As someone trained to give chemotherapy, I’ll point out that none of these options for adjuvant treatment (what’s given to patients with limited disease to lessen the likelihood of recurrence) is a walk in the park. Each bears the potential for short and long-term toxicity. So I don’t blame chemotherapy in particular, although the study authors emphasized that as a culprit based on a low-level statistical correlation.

More broadly –

This news comes as no surprise. I know too well how women at work may be treated after a breast cancer diagnosis. I am privy to the stories of dozens of women who say they were unduly turned down for promotions or good assignments, opportunities…Upon returning to work, if they took time off (which some didn’t, such as your author, during her BC treatment), they  – if they take pride in their work – find themselves missing their own doctors’ appointments, exercise and other aspects of survivorship care, just to “prove” that they’re still valuable to their office, team, business.

The harsh reality is that people who have had cancer treatment are sometimes perceived as a burden on a working group: a consultant who can’t travel quite so much, a sales rep who looks less beautiful, a nurse who has to take an occasional half-day off for a check-up. Some bosses worry, although you’d be hard-pressed to find this in writing, that an employee who had cancer treatment may suffer a recurrence, and so she can’t be counted on – no matter how capable and motivated she may be – to lead a fellowship program, or to complete an ambitious project.

What would help is for doctors to guide patients with more nuanced advice, to avoid over-treatment. And patients should ask their physicians, based on their circumstances, for the least therapy that makes sense based on the size and molecular details of their tumor, to avoid long-term toxicity. And for employers to treat their workers who have illness – and not just breast cancer – as potentially valuable workers, contributors, over the long haul.

 

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“The Dallas Buyers Club” Takes on AIDS, Peer Patients, and Not Taking “No” for An Answer

If you’re a doctor or nurse of a certain age, the Dallas Buyers Club will jog memories. If you’re among those who lost a loved one or friend to AIDS maybe 20 or 30 years ago, or not, this new film might wrench your heart. Anyone watching will be pushed to think hard about drug development today, the slow pace of progress for metastatic breast cancer and other young life-takers, and the FDA’s role in sanctioning, or blocking, treatments for adults with terminal illness.

Dallas Buyers Club image from FOCUS films copy

scene from “the Dallas Buyers Club” (Focus Films)

The movie draws loosely on the story of Ron Woodroof, a Texan rodeo rider who developed AIDS around 1985. A rail-thin Matthew McConaughey, who says he dropped nearly 50 pounds for this role, somehow nails the look of young, HIV-infected men who were filing into hospitals and clinics back then. After absorbing his diagnosis and said prognosis of 30 days to live, the cowboy teams up with Rayon, a (fictitious) transgender woman portrayed, memorably, by Jared Ledo. Together with an oddball group of sympathetic accomplices, the pair set up shop, to procure and distribute unapproved medications the doctors won’t prescribe. Jennifer Garner plays a sympathetic young physician, Dr. Eva Saks, who in the movie crosses lines a bit incredibly, too personally in the second half, to help the AIDS patients and commiserate. But otherwise the film is spot-on. It captures the desperation, determination and clinging together of people, then, affected by what was incurable disease.

One question that sticks with me, as a physician reflecting on the story, is how unclear it is which drugs, exactly, helped the protagonist. Woodroof, as depicted in the film, briefly takes AZT and then moves on to all kinds of substances including DDC (Zalcitabine) from Mexico, interferon of unknown purity or dose from Japan, protein supplements and more. Through a mix of stuff he lives until 1992, seven years beyond what the doctors first told him to expect. An old-school clinical trialist, almost any of my former teachers, and anyone who appreciates evidence-based medicine (as I do, for the record) would know and state and insist that you can’t draw any conclusions based on what happened to the movie’s protagonist, or Woodroof in real life.

On the other hand, clinical trials are painfully slow. Published trials can be flawed. Even if they’re randomized and well-analyzed, the findings can be hard to interpret when it comes to a single patient’s course and well-being. What’s a dying man to do?

Another relevant point, for people affected by almost any health problem, is the extent to which the patients took charge in the Dallas Buyers Club. They found and shared information about their disease independently of their physicians. The image of an AIDS patient using an old computer in a library, looking up articles about his condition, anticipates patient networks of which there are hundreds, on-line and in communities, today.

I came away from this movie feeling optimistic. Because when I was a student, 30 years ago, I wouldn’t have believed that a man afflicted by AIDS, as McConaughey portrays, could now, likely, live for a long time.

#hope, and happy Thanksgiving,

ES

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Should People With Health Problems Talk About their Conditions?

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

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

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

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

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

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

I am truly ambivalent about this.

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

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

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

Maybe.

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

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

Thoughts?

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Can Anyone Be a Patient Advocate?

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

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

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

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

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

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

So who’s a patient advocate, today?

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

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

“The Doctor and His Patient,” by Jan Steen

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

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

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

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

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On Sheryl Crow’s Report that She Has a Meningioma, and Singing Loud

This morning CNN fed a headline: Sheryl Crow: ‘Brain Tumor is a Bump in the Road.’ This concerned me, not only because I’m a huge fan, but because in 2006, she began treatment for breast cancer at age 43. “Singer-songwriter Sheryl Crow says she has a brain tumor,” says the first line of the CNN story. I was concerned. It seemed liked she’d been getting a little bit closer…to feeling fine.

Fortunately, the LATimes and People magazine got Crow’s story right. Their headlines, and text, emphasize the benign nature of Crow’s newly-diagnosed condition, a meningioma. Most meningiomas are benign, local expansions of the cells that line the brain and spinal cord. These growths occasionally cause neurological symptoms. Some patients have surgery to relieve or avoid complications of these non-malignant growths, but many don’t need intervention. When I was an oncology fellow I learned that meningiomas were relatively frequent in women with breast cancer, but that association turned out to be untrue. The “lesson” back then was that if a scan shows a brain mass in a woman with breast cancer, you shouldn’t assume it’s a brain met, because meningiomas were not rare in women with a history of breast cancer. According to the NCI website today, meningiomas are more common in women than in men.

Singing ‘Rock and Roll,” on top of a piano

Cancer scares aside – I’m glad that Sheryl Crow’s brain mass is benign, and that she can keep on singing if she chooses. I’ve seen her twice in concert, and she’s amazing. I have several favorite songs of hers, but the most memorable moment from a performance I’ve seen was when she got up on top of the piano at Radio City and sang Led Zeppelin’s Rock and Roll. I wish I could do that! She’s a powerful woman, for sure.

—-


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Illness is Not Discrete. On Feeling Sick, and Not Knowing What’s Next

This post is probably a bad idea. But I’ve been pondering it for two days now, since the room around me starting spinning. And I wish I were Jack Kerouac now, so that it wouldn’t matter so much if my thoughts are clear but that I tapped them out. Rat tat tat. Or Frank Sinatra with a cold. You’d want to know either of those guys, in detail. Up-close, loud, even breathing on you. You’d hire ‘em. Because even when they’re down, they’re good. Handsome. Cool, slick, unforgettable. Illness doesn’t capture them, or define them.

Two days ago I was feeling great. I went to the National Press Club for the first time, and was excited about some presentations I heard there, about which I took careful notes and intend, eventually, to share with some commentary. It was a sunny day, and I bought some groceries, planning a bunch of posts and to finish a freelance piece. In the evening I had dinner with my husband, and it seemed like my life was on track.

The rash was the first thing. Just some red, itchy bumps on the back of my neck. And then fatigue. Not just a little tired, but like I couldn’t write a sentence. And since then I’ve been in the center of a kaleidoscope, everything moving clockwise around my head. It’s not bright purple or hot pink and blue and stained glass-green kinds of colors circling, but the drab objects in the bedroom: the lamp, the shadow cast by the top of the door, the rows of light through the blinds, the brown and beige sheets, the back cover of last month’s Atlantic and my reading glasses on the nightstand, the gray bowl I’ve placed at hand, just in case I barf again. Walking is tricky. I’m dehydrated and weak, and my vision’s blurred.

This is not a pretty scene, if you could see it. And that’s the thing. The point.

Because in my experience, which is not trivial, people on both sides of illness – professionals and people you just know – are drawn to healthy people. A broken arm, a low-stage breast cancer that’s treated and done with, a bout of pneumonia – these are things that a career can afford, an editor can handle, friends can be supportive. But when you have one thing, and then another, and then another, it gets scary, it weighs you down. Just when you start feeling OK, and confident, something happens and you’re back, as a patient.

Today, in the apartment on this spring day, with fever and fatigue, I’ve got no choice. I am not a consumer now. Not even close. That is my role, maybe, when I go to the dentist and decline having x-rays or my teeth whitened. No choice, except if I go to a hospital, to have a bunch of blood drawn and my husband would fill in the forms before the doctors who don’t know me in this city inform me I’ve got a viral infection, and labrynthitis as I’ve had a dozen times before, all of a sudden, disabling. Nothing to do but rest and hydrate. And wish I’d gotten some other work done, but I couldn’t.

I’ve got to go with it, my health or illness, be that as it is. No careful critiques of comparative effectiveness research today. No reading about the Choosing Wisely guidelines. No post on Dengue, as I’d planned for yesterday.  Like many people with illnesses – and many with far more serious conditions – I’m disappointed. Maybe because I was sick as a child and missed half of tenth grade, I have trouble accepting these kinds of disruptions. Illness represents a loss of control, besides all the physical aspects.

I might try to watch TV, but more likely I’ll just fall sleep again. That happened yesterday. And for those of you health IT or gadget guys reading, who talk about smart phones and how useful they are for patients seeking info, or maybe even checking vitals, I’ll say this: I’m just glad I’ve got such a device, simply that I can call for help, that I can be in touch,  call my doctor and family. That makes being sick less scary.

This is a drag of a post, but it’s real. No point in blogging if I don’t say it like it is, what I am. If nothing else, this proves I’m alive. So there!

Better tomorrow –

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New Article on Mammography Spawns False Hope That Breast Cancer is Not a Dangerous Disease

This week’s stir comes from the Annals of Internal Medicine. In a new analysis, researchers applied complex models to cancer screening and BC case data in Norway. They estimated how many women found to have invasive breast cancer are “overdiagnosed.” I cannot fathom why the editors of the Annals gave platform to such a convoluted and misleading medical report as Overdiagnosis of Invasive Breast Cancer Due to Mammography Screening: Results From the Norwegian Screening Program. But they did.

Here are a few of my concerns:

1. None of the four authors is an oncologist.

2. The researchers use mathematical arguments so complex to prove a point that Einstein would certainly, 100%, without a doubt, take issue with their model and proof.

3. “Overdiagnosis” is not defined in any clinical sense (such as the finding of a tumor in a woman that’s benign and doesn’t need treatment). Here, from the paper’s abstract:

The percentage of overdiagnosis was calculated by accounting for the expected decrease in incidence following cessation of screening after age 69 years (approach 1) and by comparing incidence in the current screening group with incidence among women 2 and 5 years older in the historical screening groups, accounting for average lead time (approach 2).

No joke: this is how “overdiagnosis” – the primary outcome of the study, is explained. After reading the paper in its entirety three times, I cannot find any better definition of overdiagnosis within the full text. Based on these manipulations, the researchers “find” an estimated rate of overdiagnosis attributable to mammography between 18 -25% by one method (model/approach 1) or 15-20% (model/approach 2).

4. The study includes a significant cohort of women between the ages of 70-79. Indolent tumors are more common in older women who, also, are more likely to die of other causes by virtue of their age. The analysis does not include women younger than 50 in its constructs.

5. My biggest concern is how this paper was broadcast – which, firstly, was too much.

Bloomberg News takes away this simple message in a headline:  “Breast Cancer Screening May Overdiagnose by Up to 25%.” Or, from the Boston Globe’s Daily Dose, “Mammograms may overdiagnose up to 1 in 4 breast cancers, Harvard study finds.” (Did they all get the same memo?)

The Washington Post’s Checkup offers some details: “Through complicated calculations, the researchers determined that between 15 percent and 25 percent of those diagnoses fell into the category of overdiagnosis — the detection of tumors that would have done no harm had they gone undetected.” But then the Post blows it with this commentary, a few paragraphs down:

The problem is that nobody yet knows how to predict which cancers can be left untreated and which will prove fatal if untreated. So for now the only viable approach is to regard all breast cancers as potentially fatal and treat them with surgery, radiation, chemotherapy or a combination of approaches, none of them pleasant options…

This is simply not true. Any pathologist or oncologist or breast cancer surgeon worth his or her education could tell you that not all breast cancers are the same. There’s a spectrum of disease. Some cases warrant more treatment than others, and some merit distinct forms of treatment, like Herceptin, or estrogen modulators, surgery alone…Very few forms of invasive breast cancer warrant no treatment unless the patient is so old that she is likely to die first of another condition, or the patient prefers to die of the disease. When and if they do arise, slow-growing subtypes should be evident to any well-trained, modern pathologist.

“Mammograms Spot Cancers That May Not Be Dangerous,” said WebMD, yesterday. This is feel-good news, and largely wishful.

A dangerous message, IMO.

Addendum, 4/15/12: The abstract of the Annals paper includes a definition of “overdiagnosis” that is absent in the body of the report: “…defined as the percentage of cases of cancer that would not have become clinically apparent in a woman’s lifetime without screening…” I acknowledge this is helpful, in understanding the study’s purpose. But this explanation does not clarify the study’s findings, which are abstract. The paper does not count or otherwise directly measure any clinical cases in which women’s tumors either didn’t grow or waned. It’s just a calculation. – ES

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Why I Support Health Care Reform

One advantage of blogging is that I can share my ideas, directly, with people who find them interesting, provocative or otherwise read-worthy. So for those who are curious, here is my general view on health care reform (HCR) by any name, in 3 points:

First, we need it. The U.S. health care system doesn’t work. It doesn’t serve doctors. Good physicians are few and far between in some geographical regions, in primary care and in needed specialties (like oncology and geriatrics). It doesn’t serve people who might be patients, except if they happen to work for a generous employer that offers a good plan (few do), they are rich enough so they might spend thousands each year out-of-pocket and out-of-network, or they are most fortunate of all, having no serious medical problems to contend with or pay for.

Second, although I wholeheartedly support the Affordable Care Act, because it’s a step in the right direction, I don’t think the legislation goes far enough. We need a simpler, single-payer solution, as in a national health care program, Medicare-style, for all. Why? Because the quasi-plan for state-based exchanges, each with competing offerings and not necessarily interpretable terms of coverage, is too complicated. There’s no reason to think a free market operating at the state level would match the public’s or many individuals’ medical needs. As long as each provider is trying to make a buck, or a billion, it won’t put patients’ access to good care first. Besides, there’ll be administrative costs embedded in each exchange that we could live better without. As for private insurers, well, I couldn’t care less about the well-being of those companies or their executives’ incomes.

Profit is not what medical care is about, or should be about. What we need is a simple, national health plan, Europe-style, available to everyone, with minimal paperwork and, yes, limits to care.

Third point – on rationing.

Some of my readers may wonder how I, who support some costly components of good medical care, like providing breast cancer screening for middle-aged women and sometimes giving expensive drugs to people with illness, favor health care reform. New cancer meds cost around $100,000 year, more or less, as do innovative treatments for cystic fibrosis, inflammatory bowel disease, rheumatoid arthritis and other conditions. I don’t think the sane solution is abandoning expensive but life-saving and quality-of-life-improving treatments.

The hardest part of this debate and what’s so rarely discussed is the appropriate limits of medical treatment, not based on costs – which we can certainly afford if we pull back on administrative expenses of health care and insurers’ huge profits – but on factors like prognosis and age. So, for example, maybe a 45 year old man should get a liver transplant ahead of an 80 year old man. Screening for breast cancer, if it is valuable as I think it is, should perhaps be limited to younger women, maybe those less than 70 or 75, based on the potential for life-years saved. Maybe we shouldn’t assign ICU beds to individuals who are over 85, or 95, or 100 years old.

The real issue in HCR, if you ask me, is who would decide on these kinds of questions. That conversation’s barely begun, and I would like to participate in that…

Meanwhile, the Supreme Court is busy doing its thing, sorting out whether the Affordable Care Act is constitutional or not. I’m glad they’re on the case, so that they might find that it stands and we can move on and forward.

#Obamacare is right –

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A Good Personal Health Record is Hard to Find

Over the weekend I developed another bout of diverticulitis. Did the usual: fluids, antibiotics, rest, avoided going to the ER, cancelled travel plans.

One of my doctors asked a very simple question: is this happening more frequently? The answer, we both knew, was yes. But I don’t have a Personal Health Record (PHR) that in principle, through a few clicks, would give a time-frame graph of the bouts and severity of the episodes over the past several years.

The last time this happened, and the time before that, I thought I’d finally start a PHR. Like most compulsive patients, I keep records about my health. In the folder in my closet in a cheap old-fashioned filing box, the kind with a handled top that flips open, I’ve got an EKG from 15 years ago, an OR report from my spine surgery, copies of lab results that the ordering physicians chose to send me, path reports from my breasts, a skin lesion or two, and, more recently a colonic polyp, bone density studies from 2004, EMGs and more, essentially miscellaneous results.

None of the records I have are digital.

A few years back I considered using Google Health. But their service, as I understood it, involved scanning documents and uploading them to the Cloud, or paying someone else to do so. That sounded like a hassle. But even had I done that, I wouldn’t have been able to, say, see a graph of my hemoglobin since 1986, or something as simple as my weight changes over time. When Google Health folded a few months back, I was disappointed. At the same time, I breathed a sigh of relief that I hadn’t invested my personal and limited energies into putting my records there.

But now what?

I searched for a PHR, again on-line, and found some commercial stuff, mainly targeting doctors’ offices and larger health care systems. Medicare’s information on Managing Your Health Information Online offers bullet-point explanations on Why Use PHRs?

But I needed no convincing. What I need is software, or a platform, that’s user-friendly and secure. Ideally mine would mesh with my physicians’ records, but my doctors use a variety of record systems. So it’s up to me to integrate the data, if anyone will. The problem is there’s little out there, as best I can tell, that’s intended for patients. Most IT companies are, for now, focused on getting doctors to sign on.

So I’ll start an Excel spreadsheet, today, on my PC. There must be a better way.

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Thoughts, on Getting My Photo Taken at a Medical Appointment

A funny thing happened at my doctor’s appointment on Friday. I checked in, and after confirming that my address and insurance hadn’t changed since last year, waited for approximately 10 minutes. A worker of some sort, likely a med-tech, called me to “take my vitals.”

She took my blood pressure with a cuff that made my germ-phobic self run for self-regulation, i.e. I stayed quiet and didn’t express my concern about the fact that it looked like it hadn’t been washed in years. I value this doctor among others in my care, and I didn’t want to complain about anything. Then the woman took my weight. And then she asked if she could take my picture, “for the hospital record.”

I couldn’t contain my wondering self. “What is the purpose of the picture?” I asked.

“It’s for the record,” she explained. “For security.”

I thought about it. My picture is pretty much public domain at this point in my life, a decision I made upon deciding not to blog anonymously. Besides, most everyone at the medical center used to know me, including the receptionists, janitors, cafeteria cashiers, nurses’ aides, social workers, deans, full professors, geneticists, fellows in surgery and old-time voluntary physicians, among others who work there. So why didn’t I want this unidentified woman who works in my oncologist’s office to take my picture?

It made me uncomfortable, and here’s the reason: My picture is a reminder that, without it, I might be like any other patient in the system. They (administrators?, nurses, other docs, maybe even my future doctors) will need or want the picture to recall and be certain who Elaine Schattner is.

Don’t get me wrong. I agreed to the photo after all of maybe 20 seconds deliberating. (And my doctor was, I soon learned, duly informed I’d “had an issue” with it. Was that for just asking the reason?) The unidentified med-tech person used an oddly small, ordinary pink camera to complete her task.

When I met with my doctor, she explained that the photo is for security and, essentially, to reduce the likelihood of errors. The hospital has records of so many thousands of patients, many who have similar or identical names. There are good reasons to make sure that your notes on “Sally Smith” are entered into the chart of “Sally Smith” who is your patient.

It’s understandable. I remember when at the nurses’ station there’d be a sign (on “our” side) saying something like “CAREFUL: Anna Gonzalez in 202, Alma Gonzalez in 204b,” or something like that.

Patients blur.

It’s hard, veritably impossible, for most doctors and nurses to keep mental track of all of the patients they’ve ever seen and examined. There’s utility in the new system. Yes, it’s a good idea for a doctor, say upon receiving a call from a woman she hasn’t seen in 3 or 6 or 9 years, to see her picture in the chart, as a reminder.

But I hope my doctors know who I am, and not just what I look like in the image.

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