The Cancer Journals: What Has Changed Since 1980, and What Has Not

The Cancer Journals is a short book Audre Lorde published in 1980, after breast cancer and a mastectomy. Her publisher is Aunt Lute Books. It describes the book as offering a profoundly feminist analysis of her experience with breast cancer and a modified radical mastectomy.

Lorde was a poet, essayist and teacher who described herself as a Black lesbian feminist mother. That self-description is not decoration in this book. It is the analytic frame: her argument is that who a patient is changes what happens to her in a hospital and what is expected of her afterwards.

Said plainly early. Lorde died in 1992, fourteen years after her first breast cancer diagnosis. She wrote about a later liver cancer in A Burst of Light. This page states that rather than leaving it as a shadow over the reading.

It is not a memoir in the modern sense and not a guide. It is closer to a set of essays, one of them originally a speech, that happen to be organised around her own body. It can be read in an afternoon and argued with for years, which is roughly how it has been received.

It is very short, and made of a few distinct pieces rather than chapters that run on.

There is an introduction in which Lorde sets out what she is doing and why she is refusing silence about it.

There is a journal section, dated entries from around her diagnosis and surgery. These are the most immediate pages in the book: the biopsy, the wait, the surgery, the first sight of her own chest.

There is the piece most often anthologised, on breast cancer and prosthesis. It begins with a hospital visit from a volunteer who brings her a lambswool breast form and encourages her to wear it. Lorde's objection is that the offer comes first, before any talk of grief, of dying, or of what she actually wants. Its purpose, she writes, is other people's comfort. She is careful to say she is not against prosthesis as an option. She is against it as an instruction.

There is an essay on breast cancer as a political event, not just a personal one. In it she asks why so little attention goes to causes in the world and at work, and to who gets sick. She is writing this in 1980, decades before the language of cancer disparities appeared in federal publications.

There is no clinical appendix, no resource list, no statistics section of the kind a modern book would carry. Editions since have added introductions by other writers; the original text is Lorde's alone, and running under about a hundred pages in most printings.

Its strongest move is refusing the demand to look unchanged.

The prosthesis chapter is still the clearest statement of a problem that has not gone away. A person who has lost a breast is handed a way to appear as though she has not, and is praised for taking it. Lorde's point is that this substitutes appearance for recovery, and it silences the women who might otherwise recognise each other.

It is also strong on silence generally. Her line of argument, that what is not spoken about does not become safe, is the reason this book has outlived nearly all of its 1980 contemporaries.

And it is early. Federal publications had no word for disparities then. Lorde was already writing that race, class and work shape who gets cancer and who lives. That position has since been substantiated by exactly the institutions she was writing against.

Finally, it is honest about anger, which most illness writing edits out. She does not resolve into acceptance, and does not present that as a failure. There is no chapter in which she makes peace with what happened. The refusal is deliberate. It is one reason the book still reads as current, while the cheerful survivor books of the same decade do not.

Almost every clinical detail is superseded, and the gap is very large.

Her surgery was a modified radical mastectomy, which in 1980 was the default. Breast surgery now comes in many more forms. The way lymph nodes are checked has changed a great deal too. Sentinel lymph node biopsy did not exist then. It now spares many women full removal of the armpit nodes. The arm swelling she describes was a far more common consequence than it is now. Her treatment predates routine hormone receptor and HER2 testing. That testing is now the basic way breast cancer is sorted. NCI's current guidance turns on whether a cancer has those targets. It describes triple-negative breast cancer as breast cancer that does not have the targets typically used to treat other types.

Screening was also different. USPSTF now recommends screening mammography every two years for women aged 40 to 74, as a Grade B recommendation. It states that the evidence is not enough to judge below 40 and above 75. No comparable national guidance existed when she wrote.

The book also carries material on causes and on other approaches to treatment. It reflects the thinking of its moment. Some of its doubt about the medical establishment goes further than the evidence supports. Readers should not take its causal claims as current, and it is not a reason to distrust breast cancer treatment now. Her critique of a system was accurate about that system in that decade; it is not a description of the evidence base today.

Finally, it is not a book about treatment choices. A reader trying to decide about surgery today will find solidarity here and nothing actionable. That is worth saying to anyone handed the book by a kind friend in a first week of appointments. What is needed then is usually the opposite of an essay.

The most useful way to read the clinical distance is by what a diagnosis triggers.

In 1980, breast cancer was largely one disease treated by surgery. Radiation and chemotherapy were added by stage. Now a diagnosis triggers a pathology workup that separates it into groups with different treatments. NCI describes breast cancer treatment as depending on stage and on the tumor's characteristics. It lists triple-negative disease and its treatments on their own. Those treatments include chemotherapy and the immunotherapy drug pembrolizumab. They also include olaparib for people with BRCA variants, and sacituzumab govitecan in the metastatic setting.

On surgery and its aftermath, the choice architecture has widened in the direction Lorde argued for. Reconstruction is available in several forms, and so is deliberate flat closure for people who do not want reconstruction or a prosthesis. That option existing as a named, planned surgical result rather than an absence is close to what she was asking for. See mastectomy, reconstruction and flat closure experiences.

Outcomes have also moved. NCI reports 5-year relative survival for female breast cancer at 91.2 percent, with about 13.1 percent of women receiving a breast cancer diagnosis in their lifetime. NCI is careful that such figures describe large groups. They cannot predict what happens to one person. The average also sits across all stages at diagnosis, so it fits no one case. For the current overview see breast cancer and breast cancer screening.

This is where Lorde's argument has aged best, and least comfortably.

NCI defines cancer disparities as gaps between groups of people. The gaps show up in measures such as new cases, deaths and survival. On breast cancer specifically, NCI states that Black women have slightly lower breast cancer incidence than White women but are more likely to die of the disease. CDC states that for non-Hispanic Black women and Hispanic women, breast cancer is the leading cause of cancer death.

NCI does not attribute this to biology alone. It names social determinants of health: income, insurance coverage and access to transportation. It also names where people live and work, institutional racism and provider bias. And it allows that biological differences may also play a part. It states that closing those gaps takes policy change, and care shaped to fit the people getting it. The same page notes that Black Americans have higher death rates than other racial and ethnic groups for many cancer types. It states that Black men are more than twice as likely as White men to die of prostate cancer. It also states that Black women have the highest death rates from cervical cancer.

That is a federal agency, in current publications, describing a structure Lorde described in 1980 from the inside. The value of the book now is largely that: it is a primary document from before the data existed, and it turned out to be pointing at something real. See Black Americans and cancer for how this looks in practice. Lorde refused the prosthesis and said exactly why. Some of what she objected to in 1980 has changed. Some of it has not.

It suits readers who want to think about what illness does to identity, looks and voice. It suits readers who are tired of being praised for looking well. It suits anyone interested in how the politics of cancer care were argued before institutions took up the argument.

It does not suit a reader who needs current information about breast cancer, because virtually none of the clinical content applies. It may also frustrate readers who want narrative, since it moves between journal, essay and speech without transition. And its anger is unmoderated, which some readers find liberating and others find tiring.

• The Cancer Journals — publisher's page (Aunt Lute Books)
• NCI — Cancer Disparities
• CDC — Breast Cancer Statistics
• USPSTF — Breast Cancer: Screening
• NCI — Breast Cancer Treatment (PDQ) Patient Version
• NCI — Triple-Negative Breast Cancer Treatment
• NCI SEER — Cancer Stat Facts: Female Breast Cancer

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