Patient perspectives: Elaine Schattner

Rebecca Aris interviews Dr Elaine Schattner

In the latest interview in our Patient perspective series we speak with breast cancer blogger, physician and breast cancer survivor, Dr Elaine Schattner, on her experience as a patient.

Dr Elaine Schattner had severe scoliosis as a child and consequently spent a lot of time in doctors’ offices and hospital. She underwent corrective spinal surgery. This experience shaped her approach when she became a physician.

Before her diagnosis of breast cancer, she was practicing in oncology and hematology and ran a research lab. Later on, her unique experiences as a doctor who became a full-time patient inspired her to start up a blog – Medical lessons.

Here she speaks with us about her experiences and what emerging breast cancer treatments she is most excited about. She also highlights how we need to improve basic biology education in schools so that patients can be better informed when contemplating their treatment options.

Interview summary

RA: Elaine, thank you for agreeing to take part in this interview. Could you please start by telling me about your background and experience as a patient?

ES: I was a patient from the age of six when our family paediatrician noted my scoliosis, which is curvature of the spine. I ended up having to wear what was called a Milwaukee brace. I wore it faithfully, but unfortunately it didn’t work and I had to have major surgery – a 14-inch rod was fused to my spine. It was a very traumatic experience, in retrospect, with complications including fever of unknown origin and a blood clot. That was my first experience as a patient.

Years later, I was working really long hours as a medical student resident, fellow, and then as a researcher and senior physician at the hospital. Gradually, the vertebrae below the rod in my spine were crumbling. I was so determined to do a good job at work that I denied my pain. By the time they took me in the operating room, it turned out there was no cartilage remaining between vertebrae in the lower spine. I’d been rubbing bone-on-bone.

They found the breast cancer in the context of the work up for the spine surgery. It was a tough year, but I had a positive attitude and didn’t complain despite several setbacks, including a broken right arm.

It was only when I went back to work that it hit me about everything I’d lost. I’d lost my height, my breasts, my hormones, and my stamina – after breast cancer, 30 to 50% of women experience depression. This wasn’t understood back then, 10 years ago, and my oncology colleagues didn’t really “get” how physically and emotionally fatigued I was. Nor did I, at first. I was eager to just get right back on track.

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“I’m very interested in cancer immunology and molecular aspects of breast cancer.”

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RA: What unique perspective do you think you have on your health experiences from being both a physician and a patient?

ES: I know what it’s like to be a patient, and I suppose that led me to be sympathetic to their needs and concerns. Once, my supervisor told me that I spent too much time speaking with patients on rounds at the hospital. It’s true, perhaps, that I took too many of their calls and questions. Being generous in that way, I found it hard to keep my hours under control. I was constantly late for dinner, and would often have to return to the hospital to finish my work. After the cancer treatment and spine surgery, those kinds of hours proved unsustainable.

RA: How did you then become so heavily involved with social media and in to writing your blog posts? What inspired you to do that?

ES: When I started the blog it was in response to the media’s headlines about mammography screening in November of 2009, I thought that what the mainstream media were saying about mammography was so wrong. It turned out I enjoyed blogging. Having a blog is a way of communicating directly with a lot of people. You can say exactly what you think. It’s also a good way to meet people with similar interests. It broadens my perspective, I’m not just reading medical stuff and going to meetings with doctors, I learn a huge amount from fellow patients and other bloggers.

RA: You write regular blog posts about breast cancer and other health issues, what do you find to be the most interesting stories to write about for you?

ES: I’m very interested in cancer immunology and molecular aspects of breast cancer. But typically when I write detailed, science-oriented posts, those don’t get so many hits as feel-good reads, or rants – which I offer sparingly. What gets shared on Facebook and Twitter tend to be lighter posts or my own experiences as a patient. Those are more personal in tone and easier for most people to relate.

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“I was frustrated that the mainstream press ignored those papers…”

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RA: What recent therapeutic advances in breast cancer are you most excited about?

ES:

I was impressed with the PD1 data. I hadn’t seen anything like this used in women with breast cancer. It seems like there’s a subset, the Her2+ group, whom this might help. Also, those data reflect the potential for other conjugated antibodies to be used in cancers for which there’s no good treatment now.

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There are a series of recent papers in Nature. I wrote on the first, which revealed distinct patterns of breast cancer genetics and RNA expression. The scientists tentatively divided the women’s tumours into 10 groups. These subtypes suggest possible specific molecular targets for therapy. I was frustrated that the mainstream press ignored those papers, because they publish so much super-preliminary work including studies based in mice, or about single molecular changes in a cancer type. That huge analysis suggested cocktails of drugs that might be tried in patients and might drastically change, and improve, how we treat breast cancer. It’s conceivable that, with the right combination of drugs in the future, many women wouldn’t need surgery.

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The problem, I suspect, is that many scientists and researchers here are kind of stuck in their particular gene or treatment projects. That work was done mainly in the U.K and Canada. Of course the work does need to be confirmed, but I do hope it won’t be decades before anyone acts on that information.

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“I live in one of the most educated communities in the world and many adults there don’t know what an antibody is…”

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RA: What then in your opinion do you see to be the biggest challenge for patients newly diagnosed with breast cancer?

ES: We need better public science and math education. I speak to educated women all the time who’ve received a new breast cancer diagnosis, and they get conflicting advice. I live in one of the most educated communities in the world and many adults there don’t know what an antibody is, or an enzyme. They don’t understand basic statistical concepts, and that makes it hard for them to suddenly process information about monoclonal antibodies, antigens on tumor cells, and survival odds.

A doctor with the best of intentions can try to explain everything, but patients may have to make a decision in a period of hours in the case of acute leukaemia, for example. Without education you’re vulnerable to the influence of doctors who may not be perfectly informed and, as everyone does, harbour biases. You can look things up on your own, but the research doesn’t help if you can’t understand it.

Women with breast cancer have a lot of treatment options now, but the problem is that most are not in a position to make truly informed decisions.

RA: Do you think pharma should engage more with patients?

ES: The pharmaceutical companies have significant resources, and they’re in a position to help fund research, and to help patients get things they need including medications. But they are in the business of making money from treatments of diseases that these patients have. It’s a complicated relationship.

Patients and busy doctors are vulnerable. They may not realise when information, as presented from a company, is really an advertisement.

As government funds are limited, I do appreciate that pharmaceutical companies can give money to cancer research. But all funding has got to be transparent.

RA: In what ways are the needs of patients with breast cancer currently not being met, and do you think there are ways that pharma can help with this?

ES: Some women just can’t afford their treatments. Some need emotional support, and some need what I would call community support. I’m not sure how pharma can help them.

What the big companies can do best to help patients is carry out transparent and well-organised, clear trials of new drugs, fairly and openly, and rapidly. That’s the most important thing for pharma to do, in my opinion.

RA: Elaine thank you very much for your insights today.

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About the interviewee:

Dr Elaine Schattner is a physician, medical educator, writer and speaker on healthcare. Her views are shaped by her experiences as a patient since childhood with scoliosis, multiple chronic illnesses and breast cancer. She is a fierce advocate for patients’ rights and informed decision-making.

On her website and personal blog, Medical Lessons, she considers how patients and doctors learn about medicine and communicate. She is a correspondent to the Atlantic. Her freelance work has appeared in Slate, the New York Times, Scientific American, Cure Magazine and the New York Observer. She blogs about healthcare for the Huffington Post and the ACP Internist.

Dr Schattner is a graduate of Yale College and the New York University School of Medicine. She completed a residency in Internal Medicine and combined fellowship in Hematology and Medical Oncology at the New York Presbyterian Hospital. Her clinical work included daily rounds with medical students, residents and fellows on the oncology unit, attending at the hospital’s outpatient breast cancer center and directing the hematology clinic. For over a decade, she performed basic research in cancer immunology and published papers on leukemia, lymphoma and rare blood disorders. She is a Clinical Associate Professor at Weill Cornell Medical College.

You can find Elaine on Twitter, @ElaineSchattner. You can contact her by email: medical.lessons@gmail.com.

How can we improve science education in schools so that we can make better informed decisions as patients?