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June 15, 2021

Two sisters died of the same brain cancer—but fought very different battles

Daily Briefing
    Editor's note: This popular story from the Daily Briefing's archives was republished on Dec. 10, 2021.

    Seven years after her sister died of brain cancer, a woman needed surgery for a mass in her brain. Writing for the New York Times, the woman's neurosurgeon, Abdul-Kareem Ahmed, shares what the surgery revealed—and what it made him realize about the state of health care.

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    According to Ahmed, he met the patient when she had been admitted for surgery, after CT scans and a subsequent MRI revealed she had a "cystic mass … invading her left paracentral lobule," a part of the region of the brain that enables people to control their muscles.

    During their consult, Ahmed explained that the mass could be one of several things: a tumor, an infection, an "inflammatory process, or another disease."

    As they talked more, the patient confided in Ahmed her most serious concern: Her sister had died seven years prior of a glioblastoma, "the most common tumor that arises from brain tissue, and one of the most lethal of human cancers."

    In particular, the patient said she was worried about the "misery" her sister had ensured while undergoing treatment for the tumor. According to the patient, her sister's surgery to remove the mass had "left her weak and unable to speak." Although subsequent chemotherapy and radiation therapy potentially extended her sister’s life by a few months, she "never regained her old self."

    The patient acknowledged that the cancer was rare—according to Ahmed, affecting just 3 in 100,000 people—and that it is not a form of cancer that siblings are genetically likely to share. However, she said that if she did have a glioblastoma, she did not want the surgeons to remove so much of the tumor as to incapacitate her in the same way her sister had been.

    A delicate surgery

    On the day of the surgery, Ahmed and his team prepared the patient for the procedure, which involved shaving part of her hair, incising her skull, and examining her brain tissue. Carefully, they began removing the mass "from its flank," sending an initial piece to the pathologist for analysis as they continued the process.

    Soon, the pathologist informed the team that the mass sample was "'consistent with glioblastoma,'" Ahmed writes.

    Once informed of the diagnosis, Ahmed said he and his team "gradually stopped removing the tumor," per the patient's request. He explained that while removing more of the tumor is associated with longer average survival, doing so could potentially damage the brain's "healthy tissue," risking "the loss of strength, speech, vision, memory, and more." In addition, because of the nature of glioblastoma, "tumor cells that have traveled centimeters away from the bulk of the tumor, far out of the reach of any forceps, almost guarantee the cancer's recurrence."

    "Surgical perfection is imperfect," Ahmed writes. "She wanted to preserve her strength."

    A peaceful death

    After the Ahmed and his team wrapped up the surgery, they told the patient her diagnosis. According to Ahmed, she "seemed to be expecting it."

    "Just my luck," she said.

    According to Ahmed, the median survival time for this cancer, with the current standard of care, is about 15 months. However, the patient opted against chemotherapy and radiation therapy, choosing instead to accept only palliative care, because, as she put it, she didn't "want to drag it out."

    "She died peacefully four months later, surrounded by her family, listening to the 'Sound of Music,' her favorite musical," Ahmed writes.

    A moonshot for brain cancer?

    Ahmed writes that the patient's case reminded him of Neil Armstrong, whose young daughter died from what "is believed to have been diffuse intrinsic pontine glioma, a rare childhood cancer of the brainstem that shares some similarities to glioblastoma." According to Ahmed, the only available treatment for that disease—then and now—is radiation therapy, and that works only to curb symptoms—and only for a short while. To this day, the condition remains "almost universally fatal."

    However, Ahmed points out that Armstrong landed on the moon about seven years after his daughter's passing. That observation, according to Ahmed, sparked the sobering realization that while "[h]umanity has planted flags on the moon … a moonshot for brain cancer has yet to be realized" (Ahmed, New York Times, 6/11).

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