When oncologist and cancer researcher Harvey Preisler was diagnosed with lymphoma in 1998, he wanted one person to oversee his care.
“I trust only your judgment,” Dr. Preisler told his wife, Dr. Azra Raza, an oncologist.
Despite her hesitations, from that moment on Raza became the point person for her husband’s care. The two, who lived in Chicago, pored over MRIs, blood reports and treatment options. Though they shared an unrivaled expertise with years of clinical experience, nothing could prepare them for the horrors that cancer inflicts.
Preisler woke up in buckets of sweat and lived in a constant state of agony thanks to arthritic pain in his joints. He was afflicted with hot and blistering lesions on his tongue, swollen lymph nodes, blood clots, nerve pain, shingles, facial paralysis and, eventually, sepsis and meningitis.
The overwhelming pain rattled Raza, even though she had spent nearly two decades treating and studying bone-marrow preleukemic conditions and acute myeloid leukemia (AML), which has just a 27.4 percent five-year survival rate, according to the National Cancer Institute.
“Cancer is what I had been treating for two decades, yet until I shared a bed with a cancer patient, I had no idea how unbearably painful a disease could be,” writes Raza in her new book, “The First Cell: And the Human Cost of Pursuing Cancer to the Last” (Basic Books).
No cutting-edge immune therapies or experimental drug trials would save her husband. Preisler lived with unimaginable pain on-and-off for four years, until he died in 2002 at age 61, leaving behind Raza and their daughter, Sheherzad, who was 8 years old.
Stories like Preisler’s — antidotes to the cheery, ribbon-wearing stories of survival against all odds — are woven throughout “The First Cell.”
“Stay positive is the refrain, as if were a sin to voice the intense pain and suffering of cancer patients,” writes Raza, now a professor of medicine and the director of the Myelodysplastic Syndrome Center at Columbia University. “Why are we so afraid to tell the stories of the majority who die? Why keep promoting the positive anecdote?”
These are tough words and this is a tough book — but there are solutions embedded, too. The first step, Raza argues: It’s time to discard the outmoded way of viewing, researching and talking about cancer.
There is a misconception that we are just around the bend from winning the war on cancer.
A common stat thrown around is that cancer deaths have declined by 20 percent since 1980. But Raza explains how that “decrease is not due to improved treatments but mostly to early diagnosis and a decline in smoking.”
No one is winning the war on cancer. It is mostly the same rhetoric . . . for the past half a century.
Another stat offers that we are managing to cure 68 percent of cancers. Raza points out that most of that cure rate “was achieved several decades ago with the surgery-chemoradiation therapies. Recent advances relate primarily to improvement in cancer mortality due to early detection, not meaningful advances in the treatment of metastatic cancers.”
Focusing on only the success stories, she says, and portraying the battle as nearly won is engaging in deep denial about what many cancer sufferers are facing on a daily basis.
“The time has come for us to think about the majority who don’t, but who suffer the ghastly toxicities of therapies and end up losing their life savings in the process,” she writes.
Take one of Raza’s patients, “Henry W.”
He was a handsome, fit and healthy, tennis-loving father of three when he developed spontaneous bruising during a vacation in the Bahamas.
When Henry returned home, tests confirmed the worst: Leukemia had ravaged his body. His only shot at survival would be chemotherapy and a bone marrow transplant. But next steps wouldn’t come quick enough: Henry developed a fever and the chemotherapy wore him down into a shell of himself. After a brief respite from the pain and suffering — much of which was brought on by the treatment itself — he developed sepsis.
Six months after his initial diagnosis, Henry died.
The treatment offered to Harry, as well as the other patients — typically, 30 to 40 a week — Raza has seen for the past 35 years, has shockingly “not evolved much in 50 years . . . With minor variations, a protocol of surgery, chemotherapy and radiation — the slash-poison-burn approach to treating cancer — remains unchanged. It is an embarrassment,” she writes. “No one is winning the war on cancer. It is mostly hype, the same rhetoric from the same self-important voices for the past half a century.”
The sobering reality is this: Ninety-five percent of experimental drugs that hit the market fail; the remaining five “might as well have failed,” she writes, as 70 percent of them have “zero effect on survival, while 30 to 70 percent actually cause harm to the patient.”
Of the 72 cancer drugs that hit the market between 2002 and 2014, the average medication prolonged life by a mere 2.5 months.
You could argue that two months is everything to someone facing death. But these two months come at a tremendous cost. Not only might these drugs cause extreme physical suffering (as with Preisler and Henry), but also financial ruin. According to one study cited by Raza, of the 19 million people diagnosed with cancer over 14 years, nearly half lost their life savings.
Tarceva, a drug that, on average, extends the rates of pancreatic cancer survival by 12 days, costs $26,000. An 18-week course of cetuximab for lung cancer costs $80,000.
Our goals, Raza writes, are out of whack.
“We should not be aiming for weeks of improved survival. Our goals should be higher. The public needs to see how far we have drifted from the original aims,” she writes.
First, she says, we need to instate a fundamental change to how research is conducted. Of the 3 million papers published to date on cancer, a good 70 percent are not reproducible. (This also might help explain why so many experimental drugs never make it to market.)
To fix this, Raza writes that we first need to stop studying rats and instead study humans —and in doing so accept the complexity of cancer in order to properly treat it.
This failure of progress on the treatment side is “systemic,” she argues. “The vast majority of researchers are studying diseases they never see, in animals who don’t get them spontaneously or in test tubes where the ‘cancer’ must be artificially created . . . How can scientists, who demand great precision in everything they do, simply turn their eyes away from such fundamental fallacies?”
Her strategy is to redirect research to focus on prevention.
“Prevent the appearance of the first cancer cell by finding its earliest footprints,” Raza writes. “Prevention will be the only compassionate, universally applicable cure.”
We’re already seeing some positive effects from that approach. Thanks in large part to “high-quality screening,” there’s been a 25 percent decrease in cancer mortality overall — with breast-cancer deaths down 39 percent and colorectal cancers down 47 percent for men and 44 percent for women.
Raza sees this as only the tip of the iceberg. She wants to dig deeper and find the so-called “first cell” — the initial seedling of cancer — and stop it before it develops.
The concept may not be as sexy as finding the magic bullet that will cure cancer, but Raza believes that treatments and patient outcomes would be most vastly improved by a fundamental alteration of perspective.
This is no out-of-touch pipe dream. It’s happening right now at Johns Hopkins, where “liquid biopsies” locate early biomarkers of malignancy in blood, urine or sweat. In these bodily fluids, researchers look for mutations, epigenetic changes, certain cancer-indicating proteins and DNA markers.
One of the researchers there, Dr. Bert Vogelstein, estimates that a focus on early detection could reduce cancer deaths by 75 percent.
And then there are the many technological advancements on the horizon. Machines that scan your body, looking for cancer, in the shower. A smart bra with biosensors that monitor temperature and texture and could potentially suss out early-stage cells. A device you breathe into that can recognize cancer cells at their very initial stages.
“These are real-life technologies in various stages of development today, heralding the dawn of a new era in cancer research,” Raza writes.
Tackling these issues requires all hands on deck, not a sectioned off lab in an ivory tower with mice models, she writes.
You need “geneticists, biomedical engineers, radiologists, oncologists, molecular biologists, nanotechnologists, AI experts, computer scientists and bioinformation wizards” all working together on this complex issue.
The public also needs to play a role: demanding that their tax dollars contribute to researchers focusing on early detection.
“To change a situation, one has to first lift the blinders and dare to see the situation for what it is,” Raza writes. “The future is in preventing cancer by identifying the earliest biomarkers of the first cancer cell rather than chasing after the last. I have been saying this since 1984, and I will continue to say it until someone listens.”
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