A Journey Into Cancerland

Liam Davenport

June 20, 2019

CHICAGO — Being diagnosed with cancer is more than just a devastating shock that upends an individual's life. It is also the start of a journey to a foreign land that is separate from everyday life and is populated by strange ideas, customs, and people: it's a journey into Cancerland.

That was the conclusion of David T. Scadden, MD, a hematologist/oncologist and the director of the Center for Regenerative Medicine, Massachusetts General Hospital, Boston, when he went with his mother for her first hospital visit after she was diagnosed with cancer.

Seeing her change from a happy, outgoing woman to a frightened cancer patient as she crossed the threshold of the institute not only changed his perception of illness but also drove him to become first an oncologist and then a world-famous stem cell researcher.

He has now turned this journey into a book, Cancerland: A Medical Memoir, written with Michael D'Antonio, a Pulitzer Prize–winning journalist. In it, he chronicles his trials and tribulations in treating cancer patients and then moving into research. He also presents a history of cancer treatment from the early 20th century.

The book has received a great deal of praise since its publication. It was chosen as an Amazon Best of the Month Book. A review in the Wall Street Journal commented: "For all the insight he offers into the hard science and thorny logistics of studying cancer, Dr Scadden's most moving passages consider the effect of the disease on the people who suffer from it and those who care for them."

Cancerland, which was published in the United States by Macmillan in July 2018, was also chosen as the subject of this year's Book Club session here at the American Society of Clinical Oncology (ASCO) 2019 Annual Meeting.

David C. Smith, MD, from the Rogel Cancer Center, University of Michigan, Ann Arbor, discussed the book with its author.

A Reluctant Author

He began by asking Scadden "the obvious question: Why write this book?"

Scadden said that he was "a bit of reluctant author."

He explained that, even before starting the book, he and D'Antonio had discussed a number of times over the years how discoveries can go in unanticipated directions or take a long time to benefit patients.

However, it was only when D'Antonio was confronting a cancer diagnosis himself that he saw how large the disconnect can be between the breakthroughs touted on the front page of newspapers and what ends up in the hands of physicians.

Scadden and D'Antonio therefore set out see if they "could make that more evident to people as they enter into this very unknown space that is Cancerland."

However, the first draft was not well received.

"The publisher thought that it was very nice but very boring and said that it really had to be much more personal," Scadden revealed. The publiisher "then basically said it had to be about you, pointing to me.

"That meant that it had to be completely rewritten, which then it became really ugly to try to write, because it was very hard to sit down and actually put those things on paper."

The Journey Into Cancerland

Put it all down on paper he did, however. In the book, he explains that to enter Cancerland is to "step into a foreign land" that is "populated by unknown concepts, new imperatives for daily living, and people who seem too technical and remote to be real."

Smith told Scadden that, from the way he describes it in the book, "my impression...was that Cancerland, for you, had a physical border."

Scadden agreed and said he first saw this in action when his mother was diagnosed with cancer and was confronted with this foreign land.

"When my mother reached the sign by the door — Dana Faber Cancer Institute — she could not go on. She wept. Her fear, her mortality were in those letters on the wall.

"I had seen my mother as always cheerful, always ready to go forward, and now she was a patient walking in to confront a reality that could not be denied or made light of: this was life and death for her and for our family.

"It just really hit all of us how life had changed so utterly by really having this diagnosis and now entering into this space where there would be a new language, there would be a whole new series of events that would take over all of our lives and that would lead to a place that she might never escape from.

"And unfortunately, she never did."

In the book, he explains that it was also watching the "paucity of options" for his mother's treatment that made the decision over his future career: "I had to go into cancer care."

Cancer in the Past Tense

For much of the book, Scadden takes the reader through a detailed history of the development of cancer care over the past few decades. He describes some of the highs and lows of discovery that have sometimes promised more than they can deliver.

He begins, however, by reminding readers just how far things have come in how cancer is perceived.

"I grew up among some deeply religious people who felt that certain kinds of illnesses reflected badly on the sufferer. Cancer was, in their view, a product of moral failure or spiritual crisis. Others feared that cancer was an infectious disease, like the flu, and that you could catch it via exposure to someone who had it.... The result was isolation that deepened the suffering of all."

Fortunately, that view is no longer commonly held, and cancer "no longer is a mysterious vengeance of higher powers and slowly is becoming a thing that changes people's lives, but something they can speak of in the past tense."

Scadden notes how perceptions about cancer have shifted in recent decades. It went from being "the disease that dare not speak its name" to the next frontier to be conquered with the launch of Nixon's War on Cancer in the early 1970s.

The reality, despite many high-profile claims and some mass hysteria over apparent miracle cures, was nevertheless largely unchanged for cancer patients. For decades, they were bombarded with as much chemotherapy as possible, often with questionable results.

"I saw many families debate how much a patient could stand, arguing about chemotherapy among themselves and with doctors. Often, when a spouse or parent begged for the treatment to stop, they would be overruled by the frail and exhausted patient, who was both afraid of dying and afraid of letting down the people he loved.

"No one failed to recognize that chemotherapy had much in common with bloodletting, trepanation, and other 'therapies' that were inflicted upon patients before medicine recognized they were useless."

Much of the information that Scadden imparts in the book about cancer and its management is intended for a lay audience, albeit one with at least a passing familiarity with the concepts. Most of it will likely be already known by physicians, but it is fascinating nonetheless to see how he approaches the topic and to be reminded of just how many steps there have been on the road to where cancer care is today.

Maintaining Professional Distance

Alongside the history of cancer treatment and the development of novel therapies, Scadden talks movingly about the pressures on a clinician that come from treating cancer patients.

He writes of how the "bubble of expectation is ever present" and that it is "felt by every person who has an interest in cancer, which means all of us."

Moreover, he explains how, "like everyone else, doctors live with a confirmation bias that elevates successes and pushes failures into the far recesses of the mind.

"We need this psychological defense because, contrary to the widely held belief that caregivers always maintain professional distance, we get attached to the people we treat," he said.

That defence can be breached, however, and often in the least likely moments.

"When I saw my patient's daughter after he died, I said, 'You know, we tried our best to keep him alive.' And she said, 'But why did you do that?' When her question sank in, I found it hard to breathe. I just realized I had acted for me and for my peers who I worried were judging my decisions."

That is just one of several moving episodes that Scadden relates in the book, in which the personal impact of the failures of medicine are laid bare.

However, Scadden also recounts a chance encounter he had at a shop near the hospital, when someone asked him if he was a doctor.

At the time, Scadden was working on bone marrow transplants, which were in their infancy and had caused some controversy.

Initially unsure of the questioner's motives, Scadden found out that the man had received just such a transplant and that it had saved his life.

Scadden writes that "it was such an unexpected exchange that it took me a few moments to let it sink in."

He continues: "It was an incredible uplift. It made the drama of caring for the complicated process and its untoward consequences seem trivial. Nothing could reduce the extraordinary lightness of being in one young life pulled back from a certainty of death."

The Lives of Others

At the meeting, Smith asked whether Scadden's experiences, particularly with his mother, had made him "a better doctor."

Scadden replied that it "definitely did" and that "in many ways, we aren't always taught about how careful we need to be with the lives of others when we are given such incredible access to those lives."

His empathy, which comes through in the book and was evident when he talked with Smith, might be traced back to his first love — literature.

"My undergraduate thesis was on Yeats," he said. "So when they admitted me to medical school, I was both shocked and grateful."

Along the way, he was helped by the nurturing culture at Case Western Reserve University, and in particular by working with Bruce Chabner, MD, now a professor of medicine at Harvard Medical School, when they were both at Massachusetts General Hospital.

Scadden described Chabner as "a person I just had tremendous respect and affection for," adding that "in our first meeting, he said to me, 'So, how can I help?' "

Another aspect that has buoyed Scadden over the years is the patients themselves.

"One of the great things about our field is that we really see and have a chance to engage with people at such a fundamental level. And the artifice really drops away."

Although the humanism of the moment can be both uplifting and exhausting, he underlined that "any great experience is one that always has a potential major downside.

"I think that's really, in some ways, the cost of living fully."

Moving From the Clinic to the Lab

For Scadden, research would be where he found his true calling, although he juggled that with his clinical career.

He recounted that there was a moment of realization about his clinical work, however: he felt that he was "doing it more for me than for the patients, and I realized that I should stop."

A stellar career in research beckoned, and Scadden went on establish his own laboratory at Harvard University to study stem cells.

In the book, he talks about the furor that surrounded the field during the Bush era and describes the discoveries and novel treatment approaches to cancer that have been developed in the intervening years.

Scadden told Smith that it is important to engage patients in these discussions and for them "to know where we have limits of our knowledge but also what's coming down the pipe.

"I think that opens up a little bit of a different relationship between doctor and patient. I personally would want my doctor to interact with me like that."

He also had some encouraging words for would-be trainees.

"One of the things I try to convey to them is to fall in love with ideas, but don't fall in love with your own ideas," he said. "You have to be able to relinquish them when things are not looking like they're going in a direction that's going to be productive."

He believes that there is too much emphasis on focus and that people should be "awake," particularly to opportunity.

Scadden said his message would be: "Be awake to ways in which information coming at you is saying that there's a different angle here that really could make a difference, and to move as you need to.

"I think one of the great things about our profession is we have a chance to remake ourselves, and I've been able to do that," he concluded.

Scadden has leadership relationships with Agios, Bone Therapeutics, Clear Creek Bio, Editas Medicine, Fate Therapeutics, FOG Pharma, LifeVaultBio, Magenta Therapeutics, and Red Oak Medicines. He also has stock and other ownership interests with Agios, Clear Creek Bio, Editas Medicine, Fate Therapeutics, LifeVaultBio, Magenta Therapeutics and Red Oak Medicines. Smith has consulting or advisory roles with Merck and has received institutional research funding from Agensys, Astellas Pharma, Bayer, Boston Biomedical, Bristol-Myers Squibb/Medarex, ESSA, Exelixis, Genentech, Incyte, Lilly, MedImmune, Medivation/Astellas, Merck, Millendo, Novartis, OncoMed, and Seattle Genetics.

American Society of Clinical Oncology (ASCO) 2019 Annual Meeting. Book Club session, held on June 1, 2019.

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