Susan Sontag, Leukemia, and MDS: Understanding Blood Cancers

The writer who argued about the language of illness

Susan Sontag wrote Illness As Metaphor in 1978 and AIDS And Its Metaphors in 1989. The Guardian notes that both were written under the shadow of her own diagnosis of metastatic breast cancer. It also reports that she was diagnosed with a rare uterine cancer in 1998.

NPR reported that she died on December 28, 2004, of leukemia, at the age of 71. Obituaries at the time did not fully agree on which illness was the final one. This page does not try to settle that.

Her argument in those books was that the metaphors wrapped around a disease punish the patient twice. That is a good reason to describe blood cancers plainly. Here they are.

What bone marrow is supposed to do

Bone marrow is the factory inside your bones that makes blood. A single blood stem cell matures into one of three things. It becomes a red blood cell that carries oxygen, a platelet that clots, or a white blood cell that fights infection.

Blood cancers are failures of that production line, and they fail in two different ways.

MDS: a factory making defective parts

The National Cancer Institute describes myelodysplastic syndromes as "a collection of myeloid malignancies characterized by one or more peripheral blood cytopenias." A cytopenia is simply a shortage of one type of blood cell.

The immature cells in the marrow do not mature properly, so counts drop. NCI states that "anemia, bleeding, easy bruising, and fatigue are common initial findings." Median age at diagnosis is around 70.

Where MDS comes from matters. NCI notes these syndromes "may arise de novo or secondarily after treatment with chemotherapy and/or radiation therapy for other cancers." Cases in that second group are now called therapy-related myeloid neoplasms. They behave worse.

That is a general fact about the disease, not a claim about any individual. Anyone who has had chemotherapy or radiation should know it exists. Unexplained fatigue or bruising years later deserves a blood count, not a shrug.

AML: a factory flooding the system

Acute myeloid leukemia is the faster failure. NCI describes it as "a heterogenous group of blood cancers that result from clonal expansion of myeloid hematopoietic precursors in the bone marrow."

Immature cells called blasts multiply and crowd out normal production. NCI notes the result is a shortage of infection-fighting cells, anemia, and low platelets, all at once. Patients present with weakness, fever, and bleeding. NCI observes that these symptoms "often arise over a 4- to 6-week period before diagnosis."

MDS and AML are linked. NCI lists a "history of myelodysplastic syndrome or another antecedent hematologic disorder" among the adverse prognostic factors in AML. Two others are therapy-related disease from alkylating agents and radiation, and a very high white blood cell count at diagnosis.

AML is uncommon before 45, and NCI gives the median age at diagnosis as 69.

When to get checked

Blood cancers announce themselves through ordinary complaints, which is why they are missed. The pattern to watch for is several of these appearing together over a few weeks.

• New fatigue that keeps worsening
• Breathlessness on stairs you used to manage
• Skin noticeably paler than usual
• Bruises you cannot account for
• Bleeding gums, nosebleeds, or tiny red skin spots
• Fevers or infections that keep returning
• Any of these years after chemotherapy or radiation

A complete blood count is a cheap, fast test. If several of these are present, asking for one is entirely reasonable.

How the diagnosis is made

NCI is precise about the threshold. "A peripheral blood or bone marrow blast count of 20% or greater is required to make the diagnosis," with exceptions for a few specific chromosome rearrangements.

Getting the type right has consequences. NCI states that distinguishing AML from chronic myeloid leukemia and acute lymphocytic leukemia "has vital therapeutic implications." The primary tool is flow cytometry. It reads the proteins on the surface of the leukemia cells. Appearance under a microscope alone is not enough.

A bone marrow biopsy follows, because it supplies material for chromosome and gene testing. NCI calls conventional cytogenetic analysis "mandatory," noting that about half of AML patients carry chromosomal abnormalities. Genes including NPM1, FLT3, CEBPA, and RUNX1 are now checked routinely. NCI states that this combined information gives "the strongest prognostic information available."

What treatment aims at

For AML, NCI sets a clear bar. Treatment "should be sufficiently aggressive to achieve complete remission (CR) because partial remission offers no substantial survival benefit." Complete remission means no leukemia can be detected after induction chemotherapy.

NCI reports that roughly 60 to 70 percent of adults reach complete remission after appropriate induction therapy. More than 25 percent of adults with AML can be expected to survive three or more years and may be cured.

For MDS, the picture is different. NCI states that "allogeneic HSCT is the only potentially curative treatment for MDS." That means a transplant using donor stem cells. It adds that "the relatively high morbidity and mortality of this approach limits its use." Cure rates run 30 to 60 percent in selected patients, and are worse for therapy-related disease.

What the population figures show

The American Cancer Society projects 22,720 new AML cases and 11,500 deaths in the United States for 2026, a forecast carried on SEER's Stat Facts page. That is 1.1 percent of new cancer cases. The rate of new cases is 4.4 per 100,000 people per year, and about 0.5 percent of people will be diagnosed with AML in their lifetime.

Five-year relative survival is 33.4 percent, from cases diagnosed between 2016 and 2022. AML is most often diagnosed between ages 65 and 74. Death rates have fallen by about 0.9 percent a year over the past decade.

SEER attaches its own caution, and it is worth quoting. "Because survival statistics are based on large groups of people, they cannot be used to predict exactly what will happen to an individual patient."

Sources

• https://www.npr.org/2004/12/28/4248099/author-essayist-susan-sontag-dies-of-leukemia
• https://www.theguardian.com/news/2004/dec/29/guardianobituaries.booksobituaries
• https://www.cancer.gov/types/leukemia/hp/adult-aml-treatment-pdq
• https://www.cancer.gov/types/myeloproliferative/hp/myelodysplastic-treatment-pdq
• https://seer.cancer.gov/statfacts/html/amyl.html