The rare fight: How a tiny spot on Ben Murray’s nose revealed an extraordinary diagnosis

In March 2020, as the pandemic began to disrupt lives worldwide, Ben Murray, a videographer for the Military Times, noticed a numb, pea-sized spot on the tip of his nose. He dismissed it as harmless, focusing on more pressing concerns like his wife Rebecca's pregnancy and the uncertainties of the pandemic. But the spot turned red over the months bled sporadically and spread numbness across his nose.

After visiting six doctors for seven months, Murray was diagnosed in April 2021 with a disease that would forever alter his life. The spot, seemingly harmless, was squamoid eccrine ductal carcinoma (SEDC), a rare and aggressive cancer of the sweat glands, according to a report by the Washington Post.

Described first in 1997, SEDC is so rare that only a few hundred cases have been documented worldwide, mainly in older adults.

A Frustrating Diagnostic Journey

Murray began his search for answers in September 2020 after a dermatologist told him he had rosacea and prescribed creams that didn't help.

Subsequent consultations with ENT specialists also led to ineffective treatments, including creams, antibiotics for a suspected staph infection, and a proposed sinus surgery. He only understood what the problem was after a biopsy was performed in 2021.

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The Johns Hopkins pathologists confirmed the rare diagnosis: the cancer was very aggressive. Immunotherapy, radiation, or Mohs surgery were ruled out.

Rhinectomy, a drastic surgical removal of his nose, followed by radiation and much reconstructive surgery, was recommended to the doctors, as per the Washington Post report.

A Life-Changing Decision

Initially reluctant, Murray eventually agreed to the rhinectomy in July 2021, knowing it was his only viable chance to beat the cancer. The operation removed his nose entirely, but post-surgery tests confirmed no cancer had spread beyond it. The procedure was followed by six weeks of radiation, which proved grueling, leading to significant weight loss.

The reconstructive process subsequently, which would have been only 18 months, has drawn into nearly four years. So far, Murray has undergone 18 surgeries, and the journey isn’t over. Complications from prior radiation treatments and rare genetic conditions like malignant hyperthermia, which causes severe reactions to certain anesthetics, have slowed progress.

Building Resilience and Support

His experience has been an immense physical and emotional burden. Murray felt incredibly isolated and lived with the horror of visible disfigurement.

However, with all this going on, he found comfort in his family particularly his wife, Rebecca, whom he called unwavering in her support.

He was determined to help others facing similar challenges and created the Rhinectomy Support Network, an online platform that offers information and community for patients who have undergone similar surgeries. This initiative addresses a glaring gap in psychological and postoperative care for rhinectomy patients.

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A New Normal

Today, Murray is cancer-free, but there is an impact from the journey in every shred of his life. His fight has inspired his family and others around him.

For Murray, it's not just a story of survival; it's a lesson of adaptation, support, and finding a purpose even in the most unexpected circumstances.

FAQs

Q: What is squamoid eccrine ductal carcinoma (SEDC)?
A: SEDC is an extremely rare and aggressive type of skin cancer originating in the sweat glands. It has been reported in only a few hundred cases worldwide.

Q: How did Ben Murray cope emotionally after the rhinectomy?
A: Murray found strength in his family’s support and launched the Rhinectomy Support Network to help others navigate the challenges of the surgery and its aftermath.