Thank You, Rachel and Susan

Yesterday morning, two women who were active in the on-line breast cancer community died.

Rachel Cheetham Moro (1970 – 2012) was a critical thinker who vigorously supported BCAction and the NBCC’s 2020 deadline. She was a generous and thoughtful on-line friend to many women in the metastatic and more general BC community, where she used the handle @ccchronicles. Her blog provided a running, witty commentary on breast cancer news and trends. Interspersed, she detailed occasional and lately, more frequent visits to the hospital, a Florida vacation, and reflections on her earlier years. In a recent post, she included this wonderful high school photo.

high school photo, from the Cancer Culture Chronicles

Dr. Susan Niebur was a mother in her late 30s, an astrophysicist and blogger who generously shared her experiences at her Toddler Planet blog and elsewhere, including on Twitter as @whymommy. She dealt with inflammatory breast cancer starting in April, 2007. In recent months she wrote less frequently, but  positively somehow, while taking radiation treatments for painful bone mets, going in and out of the hospital and, most recently, receiving hospice care at home.

Susan Niebur in 2011, Toddler Planet

Each of these women inspired many people I know. They were brave and open, and helped others to understand what it’s like to face progressive, metastatic disease. Their words didn’t only affect people with breast cancer, but influenced also their loved ones, and individuals who face all sorts of limiting illness.

Thank you, both, for what you’ve taught me about life.

ES

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The ‘Journal’ Asks, Should Patients Have Identification Numbers?

Today’s Wall Street Journal includes a special Big Issues health care section. A post on their blog caught my attention: Should Patient Have Electronic Identification Numbers?

The idea is that people who use health care would each be assigned a universal patient identifier, or UPI. This unique number would link to a person’s health records. In principle it would facilitate transfer of a patient’s medical history between doctors, hospitals and, likely, insurance companies. There are arguments pro – mainly having to do with efficiency and patient safety; and against – mainly having to do with privacy.

My issue is that it reminds me of Auschwitz. But apart from that particular association, labeling people with numbers seems dehumanizing – what’s already a big negative in modern health care. I/we need to realize that already we have numbers. Most people have social security numbers. I have several hospital ID numbers and insurance company numbers.

As for privacy, that’s history, or an illusion. If someone wants to know something about almost any person here in the U.S, they can find it. We inhabit a grid.

The debate reminds me of when I was an oncology fellow, and I treated a woman from Central America who had breast cancer. After she underwent a biopsy at our hospital, I reviewed the slides with the pathologist and wrote orders and injected her with chemotherapy. For 15 years or so I followed her in the clinic, and at some point, maybe 5 years after her diagnosis, she told me that her name was not what I’d thought or what her chart said it was. She’d used a cousin’s name and insurance card to get the care she needed.

More recently, I was with a relative who had an MRI. Upon registering at the radiology facility, he had to show a state-issued picture ID besides his insurance card. The issue was clear: with some 50 million or so Americans uninsured, and others without the ready means to cover co-pays, some people are assuming other patients’ identities to get the care they want or need.

The costs to insurers and hospitals of patient identity fraud – what in some instances I might liken to a hungry person stealing a loaf of bread – may underlie this topic’s appearance in the WSJ.

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iPod Therapy – Why Not Prescribe It?

Yours truly, the author of Medical Lessons, is listening to music while she writes. A live version of the Stones’ “Silver Train” has just come on, and she’s happily reminded of something that happened 30 years ago. Distracting? Yes. Calming? Yes. Paradoxically helps to keep me on track? Yes.

My iPod keeps my mind from wandering further. And it lifts my mood.

And so here, on my blog, which is not peer-reviewed or anything like that, I put forth the medical concept of “iPod therapy.”

“When you’re weary, feeling small…” Music can help.

Today’s news reports that 1 in 5 Americans take drugs for psychiatric conditions. That sounds like a lot to me, but I’m no pharmaceutical surveyor. Of course many people need and benefit from medical help for depression and other mental illnesses.

But, in all seriousness, I wonder how many people might use music like a drug to keep them relaxed, happy, alert…

Why not prescribe music? It works for me, n=1.

Maybe doctors should be recommending iPods, or radios, or Pandora to some of their patients who are feeling down. I hope an academic psychiatrist somewhere, without ties to Apple or Pandora or Bose or other relevant party is coordinating a careful, prospective study of this promising and relatively inexpensive intervention.

As best I can tell, music is non-addictive. Except that if I had to live without it, I’d start humming, or maybe singing, which might be detrimental to those who live near.

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End of Summer Blog-Break

Dear Readers,
ML will take a blogging break through Labor Day. I hope the storm doesn’t cause too much damage.

Stay safe, wherever you are, and enjoy these end-of-summer days!

– ES

waves (stock photo)

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Vicious Verbiage Targets Cancer Patients’ Voices, at Cardiobrief

A journalist who covers medical matters of the heart grabbed my attention on the Fourth of July. In The Voice of the Patient: Time To Bring Out the Muzzle?, Larry Husten at Forbes’ Cardiobrief blog, insinuates that the women who spoke at the FDA’s Avastin hearings are simpletons.

In his short strip, Husten skips the possibility that the testifying patients might understand science. He dismisses their familiarity with Avastin. He ignores their potential informational value as bona fide outliers, and jumps to this killer conclusion:

…When reporters cater to these type of people they not only foster fuzzy thinking, they encourage a mob mentality that tears down any semblance of rationality or any possibility of intelligent discourse.

Medicine, of course, is all about the patient. But that doesn’t mean that every patient is right, or deserves a public voice, or that uncritical journalists should assist them in metastasizing their views.

This is rare language in a business journal:

Phrases like “these type of people” and “mob mentality” typically reflect fear of others, based in prejudice – the opposite of reason and science, to which the author aspires. Likening patients speaking out to “metastasizing,” a term normally applied to the lethal movement of cancerous cells, reveals a disturbed view of people with illness.

The Forbes Headline, in which the author and editor, or both, contemplate using a “muzzle” to silence patients, does not approach the norm in health care journalism, or even opinion-writing.

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No Room For Emotion or Exceptions to the Rule (on Avastin)

My cousin testified before the FDA oncology advisory board on Tuesday about her experience taking Avastin. This is a tragedy, to deny the only drug that is keeping a 51 year old woman alive.

image from p.3 of today’s NYTimes business section

You have to wonder, are the advisory panel members so rational in all their behavior and choices? Are they always so razor-like in their oncology decisions?

Unlikely.

These experts have an agenda, here: It’s to be perceived as scientists, even when their knowledge is imperfect and exceptions to the rule stand right in front of their eyes. But clinical medicine calls for flexibility, and tailoring of treatment to each case, and caring about each person, including those who fall at the tail, or in this case better end, of any Kaplan-Meier survival curve.

What would Larry Kramer do about this, I’ve been thinking: He’d scream, really loud, so loud he might break his eardrums. He’d wonder why others, affected and near, aren’t doing the same. And he’d understand why this picture is on page 3 of the business section, and not on the front cover; it’s because people don’t want to look or see or know or think about it too much, because it hurts.

That is the normal heart, and this is a normal response to what’s happening to women with metastatic breast cancer.

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Some Articles I Authored A While Ago

This post, on my research in cancer immunology, is strangely personal.

At one level, what follows is nothing more than a list, a narrative if you will, a sketch of a formative chunk of my career and personal history. I’ve wanted to put this out there (here) for quite a while, but couldn’t: It’s been hard for me, harder in some ways than was the breast cancer and spine surgery and all the other unpleasant illnesses I haven’t mentioned yet, to come to grips with my near-hit academic medial research career that stopped, which until today has been for the most part disconnected from this blog and my new on-line life.

So here goes, a partial list of my publications, selected from ~30:

On a novel mechanism for B-cell death, my first first-author article based on my research in lymphoma immunology, in The Journal of Experimental Medicine, 1995:

CD40 ligation induces Apo-1/Fas expression on human B lymphocytes and facilitates apoptosis through the Apo-1/Fas pathway

On how “helper” T cells can kill some forms of malignant B cells, in Blood, 1996:

CD4+ T-cell induction of Fas-mediated apoptosis in Burkitt’s lymphoma B cells

A solicited review of my early labwork, completed with my research mentor, in Immunologic Research, 1996:

Fas expression and apoptosis in human B cells

My first paper on CD40L and autoimmunity, in CLL, in Blood, 1998:

Chronic Lymphocytic Leukemia B Cells Can Express CD40 Ligand and Demonstrate T-Cell Type Costimulatory Capacity

A case report (as my lab and non-physical stature grew I became senior author), in the British Journal of Haemotology, 1998:

Novel association of haemophagocytic syndrome with Kaposi’s sarcoma-associated herpesvirus-related primary effusion lymphoma

On some experiments with mantle cell lymphoma cells, in Leukemia, 2000:

Proliferative response of mantle cell lymphoma cells stimulated by CD40 ligation and IL-4

Work accomplished with colleagues-now-friends, in Blood, 2000:

Inhibition of NF-kB induces apoptosis of KSHV-infected primary effusion lymphoma cells

The first major paper from my NIH-funded lab, in The Journal of Immunology, 2000:

Modulation of NF-kB Activity and Apoptosis in Chronic Lymphocytic Leukemia B Cells

We sent this one to Science. They declined. So did a bunch of other journals. Eventually it came out in Blood, 2001:

Survival of leukemic B cells promoted by engagement of the antigen receptor

A nearly life-eating chapter that took up way too much of my time but was probably worthwhile nonetheless, on immunology, for a Neoplastic Hematopathology textbook, in 2001:

Immune System: Structure and Function

An interesting story, we thought, in Autoimmunity, 2002:

Inhibition of Fas-mediated apoptosis by antigen: implications for lymphomagenesis

A monograph I wrote around the time I got sick, on how malignant lymphocytes die, somewhat theoretical, in Cancer Investigation, 2002:

Apoptosis in Lymphocytic Leukemias and Lymphomas

For there record, there’s earlier and later stuff too, by me alone and with others, and (sadly) reams of unpublished data, mainly from 1997 – 2002. These are the published papers I consider most my own.

Looking back, I’m pretty sure we were right, at least on most of these findings.

(Is there an opposite-of-decline effect?)

I’ve often wondered how differently things might have turned out if there’d been blogs and open-access journals with real-time comments when we in my lab were trying to get our work published in top, grant-renewing, tenure-securing journals.

Didn’t happen…

Well, now that this is done, I can keep moving forward!

With gratitude to my colleagues who collaborated, and especially to those who worked with me in the lab,

ES

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On the Importance of Giving Blood

The other day I wrote on advances in artificial red blood cells and developing platelets from stem cells. But those methods are in early research phases. Meanwhile, many patients need blood donated by adult humans, now.

I have personally benefited from the generosity of blood donors. Some were strangers: In 1974 I received seven units during and after surgery. I cannot thank those kind people directly, because I don’t know who they are, but I am surely grateful, besides forever fortunate that those units didn’t harbor hepatitis or other now-known viruses. In 2003, friends and acquaintances – a college friend’s wife, who over time has become as a cousin; a generous and strong physical therapist who worked with me then, whom I’ve never thanked sufficiently, among others; and family – stepped in and helped me get through another tough procedure by offering those vital pints.

If you’re healthy and without anemia, please consider donating blood through one of these agencies:

The American Red Cross

America’s Blood Centers

New York Blood Center

Thank you,

ES

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Medical Lessons is One Year Old!

Today Medical Lessons is one year old. That’s an important milestone in any blog’s life, as I suppose it is in this author’s.

Why blog, a mother in medicine might ask me. I’m having fun with this project, for starters. Since November 17, 2009, I’ve taught myself how to use WordPress, learned the ins and outs of website hosting companies and faulty servers, experimented with Twitter – on which I’m now hooked and, best of all, engaged a growing on-line group of interesting people.

What I like best, I think, is the freedom of modern penmanship in this strange, new mode. “It’s my blog and I’ll write what I want” is my motto in this ongoing real life-segment. How cool is that?

Where ML is headed, I’m not entirely sure. It’s been picked up by the ACP Internist blog and, as of today, the Get Better Health network. I’m a firm believer in the concept that anything can happen. So far, so good!

So thank you everyone, for reading and subscribing to ML. And for those who’ve commented, double-thanks!

I’m headed to the gym,

– ES

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End of October, Breast Cancer Fatigue

Today the author fears she is suffering from breast cancer fatigue syndrome, an unofficial and possibly infectious condition that she named this morning, that comes from too much thinking about breast cancer and the incidence of which peaks in October, and/or that she may be suffering from writing-about-breast-cancer fatigue syndrome, an affliction of some bloggers.

So she will take the rest of the afternoon and evening off, and do some reading and enjoy the weekend with her family.

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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|

Living Like It’s Shark Week!

Today is the start of this year’s Shark Week on the Discovery Channel.

shark (adapted image from Wikimedia Commons)

Dialog from NBC’s 30 Rock, Season 1, Episode 4 “Jack the Writer” (2006)*:

Tracy Jordan: But I want you to know something… You and me, it’s not gonna be a one-way street. Cos I don’t believe in one-way streets. Not between people, and not while I’m driving.

Kenneth: Oh, okay.

Tracy Jordan: So here’s some advice I wish I would have got when I was your age… Live every week, like it’s shark week.

(No further explanation is given. In the next scene the comedy writers take a one-minute dance break and then Jack provides an intro to GE’s six sigma program.)

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Marilyn and Me (on Privacy)

My thoughts on the sale of a legend’s medical films, on HuffPo:

The X-rays of Others

(Yes, it’s a reference to the movie.)

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Why Medical Lessons?

One of the things I liked best about practicing medicine is that I was constantly learning.

Making rounds at seven in the morning on an oncology floor would be a chore if you didn’t get to examine and think and figure out what’s happening to a man with leukemia whose platelets are dangerously low, or whose lymphoma is responding to treatment but can’t take anymore medicine because of an intense, burn-like rash. You’d have to look stuff up, sort among clues and discuss the case with the team and other physicians.

And then you’d get to talk to the patients and their families. In the teaching hospital where I worked as a clinical oncologist, you’d encounter a mix of folks from my east side neighborhood, Russian and Chinese and Spanish-speaking immigrants with homes in all parts of New York City, and a spectrum of visitors from countries like Cambodia, Pakistan and Ecuador. Each case offered a window into another family’s values and concerns.

Being a patient is an entirely different sort of experience except that, like being a doctor, it involves learning about medicine, problem-solving and meeting all kinds of individuals.

As a child with scoliosis – a curved spine – I discovered early that some therapies don’t work as you might hope or expect. I wore a back brace for 4 years, 23 hours each day, and it didn’t do the job. Then, my parents took me to consult with most of a dozen male orthopedists. Their crassness, frankness and sometimes kindness impressed me. I realized that like any other humans – whether they’re dictators or shopkeepers – doctors vary in their personalities.

Today I recall one young doctor who helped me, a resident at the Hospital for Joint Diseases. He came by my room early in the evening of December 31, 1974 because I needed a new intravenous (IV) catheter. By then I’d been in the hospital for weeks after spine surgery; there was hardly a vein left for heparin, a blood-thinner. It turned out the resident came from a town on Long Island not far from where I lived. He spoke openly, about his experiences in high school, as he calmly and patiently patted down my arms and hands and legs and feet until he found a spot for the IV. He got the line in, and I got my medication.

Just before midnight, Dick Clark was on TV for a “New Year’s Rockin’ Eve.” The resident, whose name I don’t recall, came by to see how I was doing. He stayed for perhaps 15 minutes, for what seemed like no reason other than to keep me company. We counted the seconds and watched the ball drop on a small black-and-white TV suspended by a hinged-metal arm over my hospital bed.

He was compassionate, and that made me feel better. What a difference he, one essentially unnamable young physician, made in my experience of that New Year’s eve in the hospital, and in my life and work.

Today, December 31, I think of him as I navigate my path as a patient and as a doctor. I’m still learning about medicine, every day in each new year.

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Proposed Model for Evaluating False Positives in Screening Mammography

First, a definition* –

False positives happen in screening mammography when the images suggest the presence of a malignancy in a woman who doesn’t have cancer in her breast.

Here’s my proposed model –

Categories of False Positives in Screening Mammograms

False positives can arise during any of three conceptual segments of the testing process:

1. False positives occur during the test itself.

This happens when a radiologist inspects a film or digital image and labels the result as abnormal, but no cancer is present. This sort of problem is interpretive.

A common scenario goes like this – a spot in a mammography image suggests the presence of a possible tumor and the radiologist correctly notes that abnormality; later on, a doctor determines by sonogram, biopsy or another method that there is no malignancy in the breast.

(Other, uncommon problems in this category would include faulty equipment that reduce image quality, mislabeling or accidental switching of films; in principle, these kinds of errors should be non-events.)

2. False positives stem from miscommunication or misunderstanding of test results.

If a clerk accidentally phones the wrong patient and tells her she needs another procedure because the results of her mammogram are abnormal, that call might instigate an untoward, false positive result. If the error is corrected early on, so that affected woman worries only for a period of hours and has difficulty sleeping for one night, she might experience some psychological and/or small financial cost from the matter. But if the mistake isn’t caught until after she’s had a sonogram or MRI, and consulted with a surgeon or another physician, the costs grow.

False positives also arise if a patient misunderstands a test result. An essentially normal mammography report, for example, might mention the appearance of benign calcifications. Upon reading that result, a woman or her husband might become upset, somehow thinking that “benign” means “malignant.” This type of false positive error, based in poor communication and lack of knowledge, can indeed generate extra doctors’ visits, additional imaging tests and, rarely, biopsies to relieve misguided fears.

3. False positives derive from errors or misinterpretation of results upon follow-up testing.

This category of false positives in screening mammography is by far the biggest, hardest to define and most difficult to assess. It includes a range of errors and confusion that can arise after breast sonograms, MRIs and breast biopsies.

3a. false positives in subsequent breast imaging studies such as sonograms and MRIs:

Many women in their forties and early fifties are premenopausal; their estrogen-stimulated breasts tend to be denser than those of older women. Reading their mammograms may be less accurate than for postmenopausal women. For this reason, a doctor may recommend a sonogram or MRI to further evaluate or supplement the mammography images.

These two radiology procedures – sonograms and MRIs – differ and, for the most part, are beyond the scope of this discussion except that they, too, can generate false positive results. A sonogram, for instance, may reveal a worrisome lump that warrants biopsy. MRIs are more expensive and sensitive; these tend to pick up subtle breast irregularities including a relatively high proportion of benign breast lesions.

3b. false positives in breast biopsy:

A breast biopsy is an invasive procedure by which a piece of the gland is removed for examination under the microscope. Sometimes pathologists use newer instruments to evaluate the genetic, protein and other molecular features of cells in the biopsy specimen. Years ago, surgeons did the majority of breast biopsies. Now, skilled radiologists routinely do a smaller procedure, a core needle biopsy, using a local anesthetic and a small albeit sharp instrument that’s inserted through the skin into the breast. Some doctors do a simpler procedure, fine-needle aspiration, by which they remove cells or fluid from the breast using a small needle attached to a syringe.

In principle, a false positive biopsy result would occur only when a pathologist, a physician trained to examine tumors at the cellular and molecular levels, misreads a case, meaning that he or she reports that the cells appear cancerous when they’re not. Fortunately, this is not a frequent issue in breast cancer diagnosis and management.

The real issue about false positives – and what may be the heart of the issue in mammography screening – has to do with how pathologists describe and define some premalignant conditions and low-grade breast tumors. This concern extends well beyond the scope of this tentative outline, but a few key terms should facilitate future discussion:

Lobular Carcinoma in Situ (LCIS) is not considered a malignancy by most oncologists, but rather an abnormality of breast glands that can develop into breast cancer.

Ductal Carcinoma in Situ (DCIS) is a Stage 0 breast tumor – a tiny cancer of breast cells that have not penetrated through the cells lining the ducts of the breast gland.

Indolent or “slow” tumors – The idea is that some breast cancers grow so slowly there’s no need to find or treat these.**

——

*This definition warrants some discussion, to follow in a separate post.

**As a physician and trained oncologist, I am uncomfortable with the published notion of some breast tumors being “so slow” that they needn’t be found or evaluated. I include these tumors only for the sake of completeness regarding theoretical types of false positive results upon screening mammography, as there’s been considerable discussion of these indolent tumors in recent news.

Slow-growing breast tumors are quite rare in young women. In my view, their consideration has no bearing on the screening controversy at it pertains to women in their forties and fifties.

——

As outlined above, the first two categories of false positives seem relatively minor, in that they should be amenable to improvements in quality of mammography facilities and technology; the third category is huge and where lies the money, so to speak.

Clearly there’s more work ahead –

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Hello Readers!

Well, I went ahead and started this blog without a proper introduction. Why was I in such a hurry?

Because I think the media’s getting – and giving – the wrong message on breast cancer screening. When it comes to long, boring medical publications like those published this week in the Annals of Internal Medicine, perhaps it’s not the devil that’s in the details so much as are the facts.

More on that tomorrow –

I read somewhere that for a blog to be successful you have to let people know a bit about the author and her life.  Besides, if I obsess only about cancer and its treatments it’d be hard for readers to come back for more.

So I’ll start with this:  I live in Manhattan and am really glad to be alive.

Thanks everyone, for reading and sharing!

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