in December 2019, Jean Grogan of New England celebratd the 5th Christmas nobody thought she would live to see thanks to her son’s cancer care invention
I had promised my ninety-year old mother, a bird enthusiast, a trip to Trinidad in search of the elusive Trinidad piping guan, a bird resembling a black-feathered turkey, whose numbers have dwindled to near-extinction over the years. My mother is a more rare bird than the guan, and I knew she would be more than capable of making the trek, even in her advanced age.
But suddenly, a roadblock appeared. That same vibrant ninety-year old woman sat in front of me in her hospital bed expecting the worst. Indeed, it had been a tiring month-long ordeal beginning with unrelenting splitting headaches. Then the misdiagnosis of a stroke. And next—after transfer to the big city hospital—a mass in her skull discovered on further X-ray scans.
Around the bed, a team of oncologists delivered the bad news. “Undeniably a malignant mass, probably metastatic carcinoma derived from your breast carcinoma ten years ago.” There was also a chest mass. Diplomatically, they gave their recommendations. “Given the extent of the cancer, and given the toxicity of chemotherapy, and given your age, we want you to consider hospice care. You should consider going peacefully without toxicity. We will see that you receive pain-free, comfortable, supportive care.” Advice given, they departed saying, “Let us know when you decide.”
With the doctors gone and just me at her bedside, Mom and my eyes locked. Although ninety and weakened by her travail, she remained alert. “What do you think?”
“First, what do you think?” I replied.
“But you’re the medical doctor; I need your advice,” she pressed.
I am a medical doctor, and I happen to be the inventor of a cancer diagnostic tool that is used on 20 million patients per year, worldwide. This was home turf for me, but it was rife with all of the personal and professional complications of a dear relative’s life hanging in the balance. I told my mother I would certainly give her advice, but she would be the one enduring the treatment.
With that, she called the doctors back in. “Your mission,” she said, pointing a finger at them, “is to get me in shape to go to Trinidad to find the guan!”
Her decision was a good one. After all, the doctors had not yet done a biopsy. We did not know the nature of the beast.
As I have learned over decades of working with cancer patients, seeing the cancer — the individual strain of cancer a patient has — is critical. The advent of biomarker assays make it possible to view a patient’s cancer cells and accurately identify the true nature of their disease so their doctors can personalize treatment, reaching every last cancerous cell and thus preventing the disease from returning. Diagnostic pathologists like myself, by examining a patient’s tumor tissue under a microscope, and with the aid of biomarker tests, can visually see the type, severity and degree of aggressiveness of a cancer and report to the treating oncologist the target of therapy. We can now fight your cancer – a cancer that nobody else has.
This is an important development, but as a care provider I’ve noticed something that is an equally important, if not more important, result of these advances in medicine: when patients see and understand the beast they are fighting, they feel empowered to accept and actively engage in their treatment. My mother had absorbed all of my dinner-table-diatribes over the years: she needed to know what she was fighting to prepare for warfare.
And that is exactly how it turned out for her. Her biopsy produced a surprise and dramatically changed her odds. It was a malignancy, but not metastatic breast cancer as suspected, rather a large B-cell lymphoma. The very same lymphoma I had studied and written about for thirty years. The very same lymphoma my wife Cande had faced, as had Beejay, an Inuit woman in Alaska I had helped. Knowing that, she willingly endured eight months of polypharmacy. She had to bear repeated toxic assault with chemotherapy every three weeks for six months, including two rounds of central nervous system (CNS) infusions. She was subjected to countless infusions and needle pricks. She was made pale, frail, bald, and wobbly. She was dragged to Chernobyl and back. She was left withered and at times an invalid.
The combined therapy that cured Cande and Beejay appears to have cured Mom. She survived beyond the odds as few ninety-year-olds do. I have proudly woven her story into my book about how I invented the device that has made survival possible not only for mom, but also for 20 million people worldwide each year, Chasing the Invisible.
Two years on, tramping the broadleaf jungle in the remote highlands of Trinidad, we heard and finally spotted that critically endangered creature. Our pilgrimage was fulfilled with great joy. Going on ninety-five, Mom had realized both impossible quests—the cure and the feathered grail.
Thomas Grogan, M.D. is an American professor, pathologist and founder of Ventana Medical Systems, Inc. He currently holds the positions of Professor of Pathology at the University of Arizona College of Medicine and Chief Scientific Officer at Ventana.