Art As A Conversation About Cancer With ‘Anyone Who Will Listen’

"Adjusted Schedule" by Dennis Svoronos (Courtesy of the artist) (Click to enlarge)

“Adjusted Schedule” by Dennis Svoronos (Courtesy of the artist) (Click to enlarge)

Art, in its essence, is just another way to tell a story, a way for humans to make meaning out of their experiences. At Health Story Collaborative, a nonprofit founded by Dr. Annie Brewster, a Boston internist and CommonHealth contributor who uses storytelling in a therapeutic context, artists are invited to tell their unique stories.

Here, Dennis Svoronos, a Boston-based sculptor who describes his work as existing “between art and engineering,” reflects on his cancer as a force for creativity and social engagement.

By Dennis Svoronos

In September of 2009 — at 26 years of age — I was diagnosed with cancer after experiencing the first of many seizures. Of all the trials I could imagine that lay ahead, I never thought most of them would be exercises in recollection.

Patient name? Dennis Svoronos (thankfully I can always get this one)

Date of birth? 3/8/83 (a palindrome, helps to keep it easy)

Occupation? Artist (maybe not my parents first choice)

Approximate date of last surgery? 11/09 (Who forgets their first brain surgery)

Existing medical conditions? Anaplastic Astrocytoma (a cancerous brain tumor)

Repeat daily, for years.

"Just in Case" by Dennis Svoronos (Courtesy of the artist)

“Just in Case” by Dennis Svoronos (Courtesy of the artist) (Click to enlarge)

As time progressed; I remember those waiting rooms — questions and ID tags — much more than the operating theatre and injections; trauma is kind of like that.

However, they made me feel intrinsically linked to my disease. What was I, without these suffixes of sickness to identify with? Somehow, all my other unique and admirable qualities were set aside for the identifier of ‘cancer patient’.

It’s easy to resign to the belief that those forms and wristbands define your life, mere statistics, data — you and your cancer. Just as painless is to ignore the process completely, pretending your exams and operations are the bad dreams of another person, your ‘real life’ goes on unaffected.

Either way, it seems you’re not to talk openly about cancer, and it is difficult for most; patients, family and doctors alike. My initial sense was, it would be easier for me — and more comfortable for others — to keep off the topic. Sickness is a surprisingly taboo subject in a very liberal culture.

The artist in me, however, couldn’t stop questioning why we hide from the discussion. Continue reading

Rethinking Cancer Research Through ‘Exceptional Responder’ Patients

Grace Silva and her oncologist, Jochen Lorch (Photo: Sam Ogden, Dana-Farber Cancer Institute.)

Grace Silva and her oncologist, Jochen Lorch (Photo: Sam Ogden, Dana-Farber Cancer Institute.)

By Richard Knox

By all odds, Grace Silva should have died more than three years ago. Instead, this 58-year-old grandmother is helping scientists rethink cancer treatment and research.

Silva’s case, detailed in this week’s New England Journal of Medicine, is one of only three recently published accounts of what cancer doctors call “exceptional responses” to a drug called everolimus (brand name Afinitor).

It was approved two years ago to treat certain breast cancers and is also used against some kidney and pancreas tumors. A couple of months after Silva started taking the drug, her thyroid tumors, which had spread to her lungs, melted away to nearly nothing. That basically never happens with this aggressive tumor, known as anaplastic thyroid cancer. “It was a near-complete response,” says her oncologist at Dana-Farber Cancer Institute, Dr. Jochen Lorch. “That in itself is exceptional. When we saw it, it was one of the better days around here.”

Studying The Exceptions

More remarkable still, Silva’s tumor stopped growing for 18 months. We’ll come back to what happened after that. But first, you should understand this story isn’t about everolimus or any particular cancer drug. It’s about how cancer specialists are learning how cancer works at the most basic level — by studying exceptional responders like Grace Silva.

And to appreciate why her case is important, you need to know how researchers figured out why she was an exceptional responder. It’s partly due to a five-year-old technology called next generation sequencing. It’s a cheap and rapid way of spelling out the genetic code of, in this case, individual patients’ tumors. Researchers can then look for gene mutations that are driving the uncontrolled growth that is cancer.

Continue reading

WSJ: Women At Risk, Doctors Split On Procedure Linked To Rare Cancer

Here’s another excellent Wall Street Journal report on the controversial procedure known as “morcellation.”  Reporter Jennifer Levitz notes that even after the FDA issued a warning on the practice (which involves a “laparoscopic power morcellator” that allows for less invasive surgery to remove fibroids by slicing them up, but can also potentially spread a rare type of cancer through the body) doctors are split on how to proceed.

According to the report:

The FDA said women undergoing surgery for what look like benign fibroids actually have a 1 in 350 risk of hosting an undetected cancer called a uterine sarcoma. Morcellating these tumors can spread cancerous tissue internally and significantly worsen the odds of long-term survival, the agency said.

So what are women to do when the medical community itself is divided? From the WSJ:

(wikimedia commons)

(wikimedia commons)

A number of doctors believe the FDA overreached, and think the cancer risk is so small that gynecologists can go an entire career without seeing a case. Others call the advisory a necessary precaution.

Hospitals and private practices are taking an array of approaches. The University of Pittsburgh Medical Center system, which has more than 50 obstetrics and gynecology practices, opted to continue using the device.

The medical system changed its informed-consent forms to include wording on cancer risk and told doctors to discuss the risk with patients. But Allen Hogge, chairman of obstetrics, gynecology and reproductive sciences there, questioned the data behind the FDA’s estimate. The FDA began looking at the issue after media reports late last year about a prominent Boston doctor who discovered she had sarcoma after morcellation.

“I think this is mostly public relations and not science,” Dr. Hogge said. In response, the FDA said it conducted a rigorous analysis of published literature.

The common practice of morcellation, which is often used for hysterectomies, came under fire when Dr. Hooman Noorchashm, a cardiothoracic surgeon at Brigham and Women’s Hospital and his wife, Dr. Amy Reed, an anesthesiologist at Beth Israel Deaconess Medical Center launched a publicity campaign aimed at stopping the procedure, Continue reading

Post-Mother’s Day Memo: Don’t Forget Women Who Can’t Have Kids



By Karen Shiffman
Guest contributor

I know it’s late but I’m still recovering. (And no, this isn’t a rant against Mother’s Day. I salute Moms. Hooray for flowers, manicures, homemade cards. I bought my mother earrings with blue lapis to match her eyes. I hope to borrow them, soon.)

But for me, Mother’s Day is the hardest date on the calendar: I can’t have children and will never be a biological mother. Bad genes, bad luck and a huge cancer scare a while back left me without a womb and a few other body parts.

But at least I have no cancer; I dodged the big one — twice. After my surgery, friends danced around the fertility issue, but I shut them down with this effective retort: “I’m lucky to be alive.” Looking back, I think they were just projecting their own anxieties about their biological clocks. I, on the other hand, was fine.

And I continued to feel fine for a while. I looked at condos. Got back in the pool. Went back to work. Everyone marveled at how quickly I’d bounced back. Then Mother’s Day came, and I fell apart. Bam. I couldn’t even buy my mother a card that first year. It was ugly.

The following year, as Mother’s Day approached, I didn’t do much better. My family went out for a celebratory brunch; I stayed home. I said it was too painful to be out with all those happy moms and families. I took my mother out to dinner later that week.

I confided to a friend about my struggle. He listened, comforted me and then did something extraordinary. The Sunday after Mother’s Day he lifted the chalice at his church, and spoke these words to the congregation:

“I light this second candle for all the special women for whom Mother’s Day last Sunday brought pain and anguish. For those women who are infertile or medically unable to conceive a biological child.”

He went on to talk about women who had suffered miscarriages or were estranged from their children by divorce or misunderstandings. He ended the blessing this way: “May our prayers and concerns be with all of you, this day.”

He got it. He heard me. I wasn’t alone. Continue reading

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 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