The Undying: Anne Boyer on Triple-Negative Breast Cancer and the Cost of Being Treated

Anne Boyer is a poet and essayist. She writes that she was diagnosed with triple-negative breast cancer in 2016, at 41. She was teaching for a living and raising a daughter on her own. The Undying came out of that. Farrar, Straus and Giroux published it in 2019, and it shared the 2020 Pulitzer Prize for General Nonfiction.

The book's full subtitle tells you its method: Pain, Vulnerability, Mortality, Medicine, Art, Time, Dreams, Data, Exhaustion, Cancer, and Care. It is a list, not a summary, and the book behaves like a list. It moves between her own treatment and the history of writing about illness. It moves again to the economics of American medicine, and to the language that cancer arrives wrapped in.

It is not a chronological account of a year of chemotherapy. Some readers want that shape: a diagnosis, then surgery, then an ending. It is withheld on purpose. Boyer argues in part that the arc is a fiction laid on sick people. She declines to supply one.

Anne Boyer is living. This page states nothing about her health beyond what she has published. Where the book describes her diagnosis and treatment, that is her account.

The book is built from titled sections of very uneven length. Some run for many pages. Some barely fill half a page. It breaks between registers on purpose.

Part of it is her own story: the lump, the biopsy, the drive to the infusion suite. Then the exact ruin of a body on chemotherapy, hair, nails, mouth, thinking, sleep. Another strand is about working through treatment. Teaching while unable to think. And the fact that unpaid leave was not an option.

There is a historical and literary strand. She reads earlier writers on illness, from classical sources through Susan Sontag and Audre Lorde. She treats them as colleagues, not as epigraphs. Several of the book's best passages are arguments with them.

There is a data strand, which is where the title's word "data" earns its place. The way patients are counted. The way outcomes are reported. The gap between a survival percentage and an afternoon of your life.

And there is a long critique of what she calls the marketed forms of illness. That takes in the pink-ribbon economy and the constant pressure to be positive. It also takes in the way cancer becomes a product category.

There is no clinical guidance in it, no chapters of advice, and no resources section.

It runs to about 320 pages, which is long for a book with this little story pull. Most readers do not read it straight through. It does not ask them to.

It is very good on pain and on exhaustion. Most illness writing waves at those and then leaves. Her account of chemotherapy is one of the closest in prose to what treatment feels like day to day. That includes the boredom.

It is also the most honest well-known book on the American cost of being treated. She was employed and insured, and still describes a year built around money. Billing calls. Prior authorisations. The sums involved in taking leave. And the knowledge that being poor and sick is a different disease from being rich and sick.

And it is serious about language. It takes the demand that a patient be inspiring and studies it as an ideology. It does not merely complain about it.

It is good, too, on the aftermath nobody schedules. Treatment ends, the appointments thin out, and the damage does not. She writes about effects on thinking, and about going back to work while still impaired. Most books do not go into that much detail.

It is hard reading, in two senses. The prose is dense and full of echoes. The subject never lets up. A reader in the middle of chemotherapy may find that exactly right, or may find it unbearable. There is no way to know which in advance.

It holds almost no practical information. It will not tell anyone what triple-negative means for their own treatment. It is not trying to. Anyone reading it to get their bearings after a diagnosis will need a clinical source alongside it.

The treatment detail belongs to one person's regimen around 2016 and 2017. Options for this subtype have changed since. The book is not a guide to care now.

Its politics are out in the open. Boyer's account is a critique of American medicine as a market. Readers who disagree with that framing will still find the reporting on cost accurate. Readers who share it should be careful. One person's run-in with a system is not a general truth about clinicians.

Readers with the same diagnosis make one fair criticism. The book's refusal of comfort is a stance. Stances are easier to admire than to live inside. Boyer owes nobody comfort. But a person handed this book in week two of chemotherapy may fairly put it down and pick up something else. That is no failure of seriousness on their part.

The phrase is a pathology result, not a stage. It means the cancer cells test negative for oestrogen receptors. They also test negative for progesterone receptors, and negative for HER2 overexpression. That matters because it rules out two whole families of treatment. Hormone-blocking drugs need a hormone receptor to block. HER2-directed drugs need HER2. For that reason, NCI's breast cancer summary keeps triple-negative treatment as its own topic. It notes that treatment may include surgery and chemotherapy among other approaches.

NCI's SEER programme puts numbers on it. The triple-negative subtype is recorded as HR-negative and HER2-negative. It accounts for about 10.7 percent of female breast cancers. Its five-year relative survival is 78.4 percent overall. That is the lowest of the four subtypes SEER reports. The effect of stage is stark: about 92.4 percent for localised disease, against about 14.9 percent for distant disease.

SEER also records who gets it. Incidence in non-Hispanic Black women runs at 25.4 new cases per 100,000. In non-Hispanic White women it is 12.7, roughly half that. SEER notes that people with this subtype tend to be somewhat younger than those with HR-positive, HER2-negative disease. That is the context for a diagnosis at 41.

Those are population figures. They describe groups, not any one person. A person's own outlook depends on stage, grade, treatment response and much else. A subtype average cannot capture that. See what does triple-negative mean and triple-negative breast cancer explained.

The most striking thing about this book's money chapters is that federal material says much the same, in flatter language.

NCI defines financial toxicity as the problems a patient has tied to the cost of medical care. That covers copayments, deductibles and coinsurance. It reports that some cancer survivors spend more than 20 percent of their yearly income on medical care. It states that patients may skip doses, or take less medicine than prescribed, to make a prescription last longer and save money. It links money hardship to lower quality of life, more symptoms and more pain. It notes that some patients rate the money burden as worse than physical, emotional, social or family distress. The results NCI names include unpaid bills and past-due mortgage payments. It also names foreclosures or repossessions, and bankruptcy.

NCI also names who carries most of it. Younger patients without savings or assets. Childhood cancer survivors. Racial and ethnic minority groups. Lower-income households, and people on public insurance. A 41-year-old teacher with a child and a mortgage is, in NCI's own terms, at high risk of financial toxicity before anything goes wrong.

That is the value of reading this book against federal sources. Boyer's account is angry and specific. NCI's is dry and pooled. They agree. See what is financial toxicity and questions to ask about treatment costs.

Boyer writes about the bills, the paperwork and the unpaid work of being treated, which most cancer memoirs leave out.

NCI's general symptom guidance is worth keeping in view alongside all of this, because cost pressure changes what people do. If symptoms do not get better after a few weeks, they should be seen by a doctor. NCI adds that cancer often causes no pain. So pain is not the point to wait for. Delay driven by a deductible is still delay.

It suits readers who want the thinking and money side of cancer taken seriously. They also need to be at ease with broken, hard prose. It suits people who have found the cheerful tone of cancer culture cold, and who want to know they are not alone in that.

It does not suit someone newly diagnosed and looking for a map. Nor someone who needs hope offered directly. Nor a reader who wants a story that ends. It also does not suit anyone hoping for an account of their own likely treatment. The book never attempts that.

• The Undying — edition record, ISBN 9780374279349 (Open Library)
• NCI SEER — Female Breast Cancer Subtypes: Cancer Stat Facts
• NCI — Breast Cancer Treatment (Adult) Patient Version
• NCI — Financial Toxicity and Cancer Treatment (PDQ) Patient Version
• NCI — Symptoms of Cancer

This page discusses The Undying for education. It is not medical advice, and nothing here is a judgement of anyone's real medical care.