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Storytelling For Health: Doctor Promotes Intimate Patient Narratives

Marie Colantoni Pechet discussing her stage IV rectal cancer

Marie Colantoni Pechet talks about living with stage IV rectal cancer

By Dr. Annie Brewster
Guest contributor

My experience in the health care system — both as a physician and as a patient living with multiple sclerosis — has convinced me that the current practice of medicine squeezes out what is a most essential element of healing: the stories of peoples’ lives.

In response to this void, I started collecting patient’s stories in 2010, and these pieces have been featured here on CommonHealth, as part of the Listening to Patients series.

Through these deep connections, I’ve seen firsthand that there is tremendous healing power in stories — for both the storyteller and for those listening. Research supports this claim.

Last year, I launched Health Story Collaborative, Inc. a nonprofit dedicated to harnessing the healing power of stories through collecting, honoring and sharing these narratives. The goal is simple: to keep patients’ voices alive.

Last week, as part of the nonprofit, we launched a new program called Healing Story Sessions, live gatherings where patients share their narratives. I like to think of them as part “Moth” radio hour, part AA meeting (though of course, this isn’t about addiction: it’s all about standing up and sharing in a safe and supportive environment). The goal of these sessions – designed in collaboration with Jonathan Adler, Ph.D, an assistant professor of psychology at Olin College of Engineering in Needham, Mass., whose research focuses on the psychological function of our stories and their relationship with health — is to empower patients and build community.

Each session features two patient storytellers and about 15 of their invited “guests.” Prior to the event, storytellers work to craft a written narrative using Health Story Collaborative’s narrative guide, which provides some structure for eliciting these challenging stories. They also work with Adler and with me to shape what they’ve written. Then, when the time comes, they speak their narratives out loud for the selected audience.

The belief is that this public sharing is meaningful and therapeutic.

Last Wednesday, 30 of us gathered in a cozy room to hear the stories of Marie Colantoni Pechet, who has written about her cancer for CommonHealth, and Lara (who asked that her last name not be used). Marie is a 51-year-old mother with Stage 4 colorectal cancer who has been living with her disease for over six years. She is on a maintenance chemotherapy regimen and continues to thrive, surprising even her most optimistic doctors.

Lara, a 47-year-old mother of four children, has a fairly new diagnosis of Stage 2 breast cancer. She is now in the midst of chemotherapy treatment and awaiting surgery in May. Her mother died of this disease 15 years ago. Continue reading

Research Explores Pregnancy-Type Test For Detecting Cancer

Pregnancy test (Wikimedia Commons)

Pregnancy test (Wikimedia Commons)

Imagine the movie scene: The leading woman has been looking a little wan. She goes into the bathroom, opens up a test kit and approaches the toilet. As the camera remains discreetly focused on a close-up of the test package, we hear dribbling liquid in the background, and a sharply indrawn breath.

“Positive,” she murmurs.

We see her emerge from the bathroom and exchange a deep, desperate look with her lover. But she doesn’t say, “I’m pregnant.” She says, “I have cancer.”

That scene is still in the realm of science fiction, but a report just out from MIT seems to bring it a step closer. It cites a paper just out in the Proceedings of the National Academy of Sciences (link to come when available) that describes success in diagnosing cancer with a simple, paper-based test — an advance that could be particularly important for the developing countries where 70 percent of cancer deaths now occur. From the MIT press release by Anne Trafton:

The diagnostic, which works much like a pregnancy test, could reveal within minutes, based on a urine sample, whether a person has cancer. This approach has helped detect infectious diseases, and the new technology allows noncommunicable diseases to be detected using the same strategy.

The technology, developed by MIT professor and Howard Hughes Medical Institute investigator Sangeeta Bhatia, relies on nanoparticles that interact with tumor proteins called proteases, each of which can trigger release of hundreds of biomarkers that are then easily detectable in a patient’s urine.

“When we invented this new class of synthetic biomarker, we used a highly specialized instrument to do the analysis,” says Bhatia, the John and Dorothy Wilson Professor of Health Sciences and Technology and Electrical Engineering and Computer Science. “For the developing world, we thought it would be exciting to adapt it instead to a paper test that could be performed on unprocessed samples in a rural setting, without the need for any specialized equipment. The simple readout could even be transmitted to a remote caregiver by a picture on a mobile phone.”

Continue reading

Can We Use The Crowd To Beat Cancer? Seeking Patient Data To Save Lives

You’re diagnosed with cancer. Your life changes in an instant and you’re faced with big choices and no road map. Consider this scary statistic: Five-year survival rates for common cancers can vary by 50 percent depending on where a patient is treated. And this: You often can’t get precise answers on which type of cancer responds to which type of treatment.

The uncertainties could drive anyone mad; and if you’re like Marty Tenenbaum, a cancer survivor, computer scientist and Internet entrepreneur who thrives on data, it can make you truly crazy. “Patients are dying because information is not evenly distributed – which is outrageous in the Internet age,” Tenenbaum says. “Your treatment is based on your mail ZIP code, not the molecular ZIP code of your tumor.”

He cites the 50 percent variation number often as evidence that better information can save many lives. He recalls when he first learned of his cancer, “I went running around to six different doctors, each had a different treatment recommendation, but there was no data with which to make a rational decision on what would work best for me.”

Tenenbaum was diagnosed with metastatic melanoma in 1998 at the age of 55. “The wicked thing about melanoma is that it can metastasize anywhere — and it does,” he said. A cure, in his case “was almost out of the question…treatment options were minimal.” Tenenbaum’s cancer had spread such that surgery wasn’t considered viable. Still, Tenenbaum, a tenacious guy who got rich in the dot.com boom, set out to find a surgeon, which he did — Donald Morton, the renowned cancer surgeon and researcher.

Sixteen years later, Tenenbaum is now an advocate for what he calls “precision oncology 3.0” – using molecular profiling and sophisticated computational methods to reverse-engineer the putative networks that drive a given patient’s tumor, and attack these drivers with combinations of targeted therapies. He founded the nonprofit Cancer Commons to level the cancer playing field so that all patients get access to the same, top-rate data. “Awareness is not the problem today,” he says. “We need science, data, so patients can approach their cancer in a systematic way.”

Every patient experiences this: you face a life or death decision, which often must be made in days. You go out for second opinions and get conflicting recommendations. You’re thrust into this strange world with no maps, no Zagat’s, no nothing.

Cancer Commons, which exploits the “convergence of recent developments in genomics, big data informatics, social networks, and personalized medicine,” aims to radically transform cancer research and treatment. Here’s how it works. If you’re a cancer patient, you share your data (anonymously) — what type of cancer you have, its molecular signature (if you’ve got that), what types of therapies and treatments you’ve tried and whether they worked or didn’t.

What you get in return is highly targeted news and updates on developments that may be clinically relevant to you — including results from the latest medical conferences and researchers, tweets on the top takeaways from the annual personalized medicine meetings, and relevant patient blog postings. You also get access to a curated data base linking molecular subtypes of cancer, with recommended treatments and trials. That knowledge is continually updated based on scientific developments and actual patient outcomes.

When the Commons grows big enough, the thinking goes, there will be a large pool of useable data available for all. (Currently there are only a couple of thousand patients involved, with the focus on melanoma, lung and prostate cancer, but Tenenbaum says a big expansion is in the works.) “Once we get enough data, patients will be able to know, for the first time, what their peers are actually doing and how it’s working. If they then report back what they did, a virtuous learning cycle ensures, resulting in better and better data.”

Put another way, he says Cancer Commons hopes to build “a consensus model of the various subtypes of cancer and how best to treat them with the latest targeted- and immuno-therapies, to learn from each patients’ outcomes whether the experts got it right or not, and then to rapidly disseminate the results in time to help the next patient.”

I caught up with Tenenbaum recently at MIT in Cambridge where he was giving a talk — provocatively titled, “How To Beat Cancer.” In it, he argued that often, what are considered to be “incurable” cancer cases may, actually, “be beatable by exploiting biological features unique to each individual’s cancer.” Like others, he suggests, “we’re on the cusp of managing cancer as a chronic disease using new cocktails of targeted therapies much like treatment for HIV.”

He agreed to answer a few more questions.  Here, edited and condensed is some of our conversation:

RZ: You talk about a basic problem in cancer care that hinges on patient data. What is the problem?

MT: Every patient experiences this: you face a life or death decision, which often must be made in days. You go out for second opinions and get conflicting recommendations — each doctor knows what they know and they each know different things. You’re thrust into this strange world with no maps, no Zagat’s, no nothing. So no one could tell me: ‘Which treatment is best for me?’ [Part of the problem is that] no one shares data — neither the de-identified data from personal health records, nor the data that drug companies collect during clinical trials – not even the data from the control arms of trials, or from failed trials. The only ones with the incentive and urgency to share the data are cancer patients.

After your cancer recurred and you were enrolled in a clinical trial, you describe a kind of “aha” moment. Can you explain?

In 2003, I entered a cancer vaccine trial. Shortly after I went off the vaccine I had a recurrence. I opted for more surgery and went back on the vaccine, but after six months the vaccine was no longer available. The trial had been halted because, statistically, patients on the vaccine arm were not doing better than those on the control arm. However, the vaccine appeared to help some people – and I was fortunate to be among them, having experienced a particularly strong immune response. The vaccine company had no interest in trying to understand why a few patients, like me, benefitted. This is a big shortcoming with clinical trials based on population statistics…to do science, you really need to figure out why it worked in one person and why it didn’t in another person. Many good drugs have been rejected by failing to do this level of analysis.

How is Cancer Commons unique? There are other certainly other data-sharing, disease specific, patient-driven advocacy groups out there, Patients Like Me, for instance.

We’re patient focused and science based; Our mission is to aggregate and analyze data, to provide patients with the best information — up-to-the-moment, personalized, and actionable to help them make informed decisions…like a Lonely Planet guide to cancer.

Patients have the legal right to their data — the HIPAA law just changed this year and it makes it much easier for patients to get their data in digital form. But beyond that we want to build this consensus knowledge base — what are the molecular subtypes of this cancer and how should each subtype be treated.

Typically, tumors are analyzed with a genomic or panomic panel — you have data, then you have treatments recommended by experts based on trials. You want patients and their doctors to be able to consult this knowledge base, determine their subtype, determine their options or have a different option. The point is, do whatever it is you want, but tell us what you did and how it worked so this becomes a virtuous learning cycle. This way we can continually test the hypotheses of experts and continually refine them. Cancer is not generic. Patients in the same group who were thought to have the same disease respond differently. For instance, the current melanoma model has about 30 actionable subtypes [a few years ago we knew about 3] and this comes from widespread availability of molecular testing.

[An aside: Exhibit A when it comes to the potential of this molecularly personalized diagnostic testing and treatment is the high-profile case of Lukas Wartman, a young doctor diagnosed with Acute Lymphoblastic Leukemia, a cancer of the blood that is highly treatable in children, but often fatal in adults. Doctors discovered that in Wartman's case, a gene called FLT3 was being expressed at a much higher level than normal. So, using a drug-gene interaction database, doctors at the Genome Institute at Washington University "found a drug, Sutent, normally used in kidney cancer that targets a “hyperactive” FLT3 gene." Wartman's cancer went into remission.]

Why do you compare the current state of cancer care to the early days of AIDS?

Genetically, every cancer appears to be unique, and like AIDS, requires a custom cocktail of three or more drugs to treat it, and prevent it from evolving into a resistant form. With thousands of subtypes and tens of thousands of therapy combinations , the current clinical trials system, which was designed to test drugs as monotherapies on homogeneous populations, is unsustainable. There simply aren’t enough patients to populate a randomized trial for each rational drug combination.

For this reason, we’re designing Cancer Commons to support rapid proof of concept studies in small numbers of patients — or even individuals – by connecting them directly with researchers interested in their subtype of cancer. Continue reading

Study: In Mice, Antioxidants Spur Lung Cancer Growth

Vitamin C, a well-known antioxidant (C. Bickel, Science Translational Medicine.)

Vitamin C, a well-known antioxidant (C. Bickel, Science Translational Medicine.)

No, this is by no means an excuse to stop eating berries and beans and apples and all the other healthy foods high in antioxidants, those natural chemical compounds — the most famous are vitamins A, C and E — that help protect cells from damage. If there’s one thing scientists agree on, its that plant-based foods are good for us.

But antioxidant supplements or drugs, in people at high risk for lung cancer, may not be. A new study just out in the journal Science Translational Medicine suggests that antioxidants in mice with incipient lung tumors can dramatically boost the risks of cancer, tripling the number of tumors and speeding death. And the researchers say they’ve figured out how this works: The antioxidants seem to lower levels of a key suppressor of tumors, a protein called p53. From the press release:

Studying two different antioxidants, vitamin E and a drug called acetylcysteine, Martin Bergö and colleagues found that antioxidants sped up the progression of lung cancer in mice and in human cell lines. The authors used normal daily dietary doses of vitamin E and relatively low doses of acetylcysteine (humans typically received the antioxidant in an inhaled form, but the mice received it by mouth). When mice with early stages of lung cancer were given antioxidants, their tumors accelerated in growth, became more invasive, and killed the mice twice as fast compared to mice with early lung tumors that didn’t receive antioxidants.

So what are we to make of this? Oftentimes, basic scientists like Bergö, of the University of Gothenberg, in Sweden, punt on such questions. It’s not their job to translate bench work to the bedside. But Bergö answered the question head-on during a press conference.

“If I had a patient with lung cancer, I would probably recommend that they do not take extra antioxidants,” he said. “Would I make a general recommendation to healthy patients? Definitely not, because we haven’t studied that and we don’t have any data on that.”

What would he say to a patient with chronic lung disease who was taking the antioxidant drug acetylcysteine to improve breathing? “I don’t know what I would say, actually. I would make sure that as much research as possible is sparked from this as soon as possible, to determine if acetylcysteine use in this patient is causing an increased risk of cancer.”

Let’s add a few more grains of salt. I asked Prof. Robert Weinberg of MIT, famed for his research on cancer-related genes or “oncogenes,” what the public should make of this new antioxidant-cancer link. His emailed reply:

I would say that it is very difficult to extrapolate the results of this study to human beings, even hard to issue a caution about overdosing on antioxidants, since there is so much evidence that usually they do a lot of good. To my mind, this study only becomes meaningful (as well as it was done,) once others have explored the effects of antioxidants in other tumor systems, and that the effects that they observed might be very idiosyncratic for one kind of tumor triggered by one type of oncogene in mice.

Bergö made a similar point himself to reporters. Continue reading

My Cancer And Lisa B. Adams’: Don’t Let Anyone Write You Off

By Marie Colantoni Pechet
Guest contributor

For a long time, I lived a fun life with a great job, a handsome husband and beautiful children. I wore fabulous clothes and went to fun parties and trendy restaurants. I exercised and ate healthy foods and had a positive mental attitude, which I believed contributed to my privileged life.

Marie Pechet and family, summer 2013 (courtesy)

Marie Pechet and family, summer 2013 (courtesy)

In that life, illness didn’t happen to me. It didn’t happen to most of my social circle or my family, and, other than the rare accident, death was something that happened only to the generation or two ahead of me. Illness and death were not pretty or fun or any part of that life.

When I had the hubris of the healthy, I would distance myself from the rare friend who became sick. They must have done something that caused it, I might have thought. They were living an unhealthy life or caught some bad karma. Call me when you’re better. I didn’t actively think these things, but I might as well have.

Then it happened to me: In my forties, with two young children, I received a stage 4 cancer diagnosis. Despite my best efforts, it is conceivable that I did something to cause it, lived in some unhealthy way or had bad karma. For whatever reason, I am where I am.

I recently read some of the articles on the Lisa Bonchek Adams controversy. In case you missed it, Lisa has been busy on social media documenting her life with stage 4 cancer.  On Jan. 12, in a, frankly, tone-deaf opinion piece, former New York Times executive editor Bill Keller triggered a web firestorm by suggesting that Lisa is not appropriately facing her own imminent death. (Keller’s wife, writer Emma Gilbey Keller, also wrote a piece that offended Lisa’s followers; the article, published in The Guardian, was subsequently pulled from the publication’s website, according to reports. The WBUR/NPR show On Point is discussing the controversy today here.)

Like Lisa, I am a mother. I am dealing with a stage 4 cancer diagnosis. I have been at this for six years. I am lucky enough to have the support of family and friends. And I blog.

Screen shot 2014-01-15 at 10.30.58 AMLike many writers, I find the process of writing therapeutic. It helps me to sort out my experiences and emotions. It helps me to connect with others in what can definitely be an isolating process. And sometimes, it seems to help others.

Through my blog, I’ve met amazing people, many of whom are also cancer patients. Most of them blog as well, Continue reading

Marty Walsh’s Childhood Cancer: Curable Here, Not So Easy In Africa

By Elizabeth Mehren
Guest Contributor

Just about everyone in town knows by now that Marty Walsh is the son of Irish immigrants, a former labor organizer, a recovering alcoholic and a man who is happily unmarried to “the love of my life.” But it’s possible that few outside a rather eccentric quartet of Boston University researchers took note of one particular item in the biography of Boston’s new mayor.

Walsh is a survivor of Burkitt’s Lymphoma, a virulent variety of pediatric cancer that is rare in North America. Walsh is living proof that this fierce form of non-Hodgkin’s Lymphoma — known to be the fastest-growing human tumor — responds well to early diagnosis and chemotherapy.

But in sub-Saharan Africa, where Burkitt’s is the most widespread type of childhood cancer, the outcome is often less rosy. Burkitt’s Lymphoma represents half the number of childhood tumors treated at regional hospitals in Kenya and Uganda. Experts say the disease — first identified in 1958 — is on the rise. Diagnosis is challenging. Treatment is costly. In Africa, treatment often is difficult to obtain because so few facilities are equipped to address Burkitt’s Lymphoma.

Like most Americans, I was unaware of the fatal grip Burkitt’s Lyphoma holds on much of Africa. Then last May, I traveled to western Kenya as part of the aforementioned quirky quartet of four professors. We had joined forces to look at the intersection of public health and journalism, particularly at times of crisis and disaster.

Our goal, with funding from the Bill and Melinda Gates Foundation, was to set up a global student news network dedicated to telling the stories of foreign aid from the point of view of the recipients. And so we brought eight B.U. students together with 10 students from two Kenyan universities in Nyanza Province, Kenya’s westernmost province, and set about uncovering narratives about health, education, employment and other areas. To demonstrate our cross-cultural intentions, we named our project Pamoja Together. Pamoja is the Kiswahili word for “together,” so what we were saying was “Together, Together.”

I learned about Burkitt’s Lymphoma as we conducted research in advance of the trip, to a region that lies close to the Ugandan border, high on the banks of Lake Victoria. One of the stories that one of our Kenyan students, C.J. Ouma, reported on concerned a hospital — one of the few in Kenya that treats this difficult disease.

Chronic malaria abounds in equatorial Africa. For children, this condition can be linked to the development of Burkitt’s Lymphoma. The African strain of Burkitt’s also is closely associated with the Epstein-Barre virus, the main cause of infectious mononucleosis. Burkitt’s is especially prevalent in Kenya’s malaria-prone lake regions.

The disease often starts with swelling in the neck, groin, face or under-arm areas. In Africa, lumps on the skin can result from many causes, including insects, parasites, allergic reactions and random rashes. But Burkitt’s distinguishes itself further because these can grow rapidly, sometimes doubling in 18 hours.

Pamella Adhiambo Otieno, mother of a 2-year-old Burkitt’s Lymphoma patient, Christine Achieng, said, “The symptoms started at six months, and we assumed it was a simple growth.” Continue reading

The Checkup: Talking Back To Your Doctor

Welcome to the The Checkup. Our sixth episode “Talking Back to Your Doctor,” opens with a question: Why do so many of us find it so hellishly hard to speak freely with our doctors? What is it about a white coat that makes even normally assertive people clam up?

(To listen to The Checkup now, click on the arrow above; to download and listen later, press Download; and to get it through iTunes click here.)

We begin with the dramatic story of Alicair Peltonen, an administrative assistant diagnosed with a rare cancer who had to have a chunk the size of a baseball removed from her thigh. Throughout her medical saga, she found that she often had urgent questions echoing in her mind, but felt too inhibited to voice them. She set out to find out why. The Checkup

We speak with Dr. Jo Shapiro of Brigham and Women’s Hospital in Boston about what she calls “Conversation Deficit Disorder” among doctors. And we hear from Dr. Annie Brewster, who has special insight into doctor-patient communication because she’s both a practicing doctor and a multiple sclerosis patient who decided not to follow her doctor’s recommendations about taking a particular medication.

Each episode of the Checkup features a different topic—previous topics included college mental health, sex problems, the Insanity workout and vaccine issues.

This is the closing episode of our first season of The Checkup. Please tell us what you liked and disliked and what you want more of. Like CommonHealth on Facebook or drop a note to podcasts@slate.com.

We’ll keep you posted here on all our plans for future podcasts.

Nagging Wives Save Lives: Study Finds Married Folk Fare Better With Cancer

(Associated Press)

(Associated Press)

A major new cancer study suggests that when it comes to cancer, nagging wives may just save lives. Nagging husbands too, of course.

The study just out in the Journal of Clinical Oncology found that marriage appears to confer three signal advantages on cancer patients: Married people are likelier to be diagnosed before the cancer has spread. They are likelier to get and stick through the right treatments. And they are likelier to live longer after the diagnosis.

In some cancers, the paper found, being married appears to improve a patient’s survival odds even a bit more than chemotherapy.

The study is the biggest yet on the link between marriage and cancer outcomes, said its lead author, Dr. Ayal Aizer, chief resident of the Harvard Radiation Oncology Program. It began with a database of more than 1 million patients and looked at the ten cancers that cause the most deaths, including cancers of the prostate, breast, lung and colon.

How might marriage improve cancer outcomes? Couldn’t married people just be richer or healthier or better able to get care? “We think it’s actually the marriage itself that really causes better outcomes,” Dr. Aizer said. “And we think it’s the support that a patient with cancer gets from their spouse that really is the difference-maker.”

How much of a difference does it make?

Dr. Aizer and his team generated a single analysis of all the patients with all their cancers and found: “Patients who were married are 20 percent more likely to be alive after their diagnosis of cancer at any time point” compared to patients who were not married, he said. “They’re also about 17 percent more likely to present with localized cancers, ones that are treatable or curable; and they’re about 53 percent more likely to get the recommended or appropriate treatment for their cancer.”

That 53 percent was striking and a bit baffling. Wouldn’t most patients get appropriate cancer treatment? Continue reading

Report: ‘Crisis’ In Cancer Care Requires New, Patient-Centered Approach

The U.S. is facing a “crisis in cancer care” due to growing demand from an aging population, a shrinking network of specialists and the increased complexity surrounding the disease and how to treat it, says a new report from the Institute of Medicine.

Here’s the problem, according to the IOM:

In the United States, approximately 14 million people have had cancer and more than 1.6 million new cases are diagnosed each year. However, more than a decade after the Institute of Medicine (IOM) first studied the quality of cancer care, the barriers to achieving excellent care for all cancer patients remain daunting. Care often is not patient-centered, many patients do not receive palliative care to manage their symptoms and side effects from treatment, and decisions about care often are not based on the latest scientific evidence.

Institute of Medicine

Institute of Medicine

The cost of cancer care also is rising faster than many sectors of medicine–having increased to $125 billion in 2010 from $72 billion in 2004–and is projected to reach $173 billion by 2020. Rising costs are making cancer care less affordable for patients and their families and are creating disparities in patients’ access to high-quality cancer care. Continue reading

More Evidence For ‘Stinking Rose’ Garlic’s Cancer-Fighting Potential

By Judy Foreman
Guest Contributor

This may be the most delightful of all medical prescriptions: Chew a little raw garlic a couple of times a week and the risk of lung cancer drops by almost half. It drops by almost a third even if you’re a smoker.

richard_north

(richard_north/Flickr)

News this good, not to mention this tasty, is rare in medicine, but that’s the conclusion of a large Chinese study published recently in Cancer Prevention Medicine.

The researchers compared 1,424 lung cancer patients with 4,543 healthy adults and asked them about their lifestyle and dietary choices. Granted, just asking people to recall their own behavior is hardly the ideal form of research. (Far more informative are studies that randomly divide people into two groups, give one group a treatment and the other group a placebo without revealing who’s getting what, and then compare the results.)

That said, the results from Jiangsu Center for Disease Control and Prevention in Nanjing are noteworthy, said John Milner, who has studied garlic chemistry for decades. Continue reading