Reading: Does DNA Dictate Destiny?

Health

Does DNA Dictate Destiny?

I was sure pancreatic cancer would come for me like it had my mother. Would a DNA test change anything?

By Maureen Pilkington

Sitting in the examination room with Elena, a certified genetic counselor at NewYork-Presbyterian/Columbia University Medical Center in Manhattan, we drew my family tree. As we spoke, she jotted words on the tip of each branch like Christmas ornaments: lymphoma, leukemia, bladder, breast, pancreatic.  

Lots of pancreatic.  

Pancreatic cancer is so vicious I never feared the other types in my lineage. With most breast cancers, I assumed, you had a fighting chance. Was this hangman tree a diagram of my future? Would the deadliest cancer fall on top of me like a rotten apple? 

Elena called in the phlebotomist and I rolled up my sleeve. “In four weeks we will know your proclivities and take it from there. Here’s a pattern,” she said, moving her finger down the trunk without looking at me.

Did I really need a geneticist to tell me my inheritance? 

Written in the Stars
I had no physical symptoms of pancreatic cancer, but that’s the ruse. There are no warnings in the early stages. I couldn’t even bring myself to say the name of this disease out loud — pancreatic cancer — the crackling sound of it warned me an intruder was creeping up the steps. I was haunted by what I had observed on my mother’s side of the family since childhood. And during the last few months of her life, when Mom lived with us so I could take care of her, I became even more familiar with the nuances of this cancer. My obsessive fortune-telling about my own health was starting to get in the way of my mental well-being. 

When my kids were toddlers I talked to Mom every day by phone. Her voice started to wobble as if she were talking through a paper cup and string. It was a sign. It reminded me of the same fragility I had heard in my grandmother’s voice before we knew how sick she was.

“Can’t get rid of this flu, or the nausea,” Mom said.  

I knew what had come to get her.

They say the pancreas is shaped like a tadpole. I imagined it hiding in Mom’s stomach, snuggled into the duodenum of her GI tract. I saw its decaying nubby teeth, stubble around its mouth, its neck skillfully blending into the superior mesenteric artery and vein. One of its camouflaging tactics.

How many times had I sat with my aunt, a beautiful 43-year-old mother of five with Ping-Pong-ball-sized lumps under her chin? My grandmother, at 63, with a belly so bloated she looked close to giving birth? A bald great-aunt, minus her breasts? And then Mom. Me giving her prescribed injections in the folds of her stomach as though it would cure her. “Looks like yellow perfume in there,” Mom joked.

At times, not one of them could get a saltine cracker down. I figured cancer was synonymous with aging in my family.

“So if I have positive results,” I confirmed with Elena, “I may or may not get one of these cancers. And, if I have negative results, I still could get any one of them.”

Cosmic Rays
After the blood test, I went back on another day to the basement level of NewYork-Presbyterian/Columbia to have an abdominal MRI. I was given a robe and socks in a plastic bag, and I stood on a square of paper towel so my bare feet would not touch the floor while I undressed. I put my jewelry and cell phone in a locker and was advised to use my phone number as a code so I wouldn’t forget it. After, I was injected with dye to ensure brilliant images.

I was told to wait — I hope you have a book with you! — until my name was called. The nurse repeated these directions several times, as if the look on my face expressed confusion. In the waiting area, on the television, the Today show’s Willie Geist and Jenna Hager Bush were having a lively conversation about running into each other the night before at a Manhattan restaurant! Or, were they invited to the very same party at the very same restaurant? I wasn’t sure.

My name was called and I was escorted into a chilled cavernous area similar to an unpolished World War II airplane hangar. One tubular MRI machine squatted in the center. I thought of the words galactic, asteroid, cosmic. 

They put me on a bed at its donut-hole opening, set heavy blankets over my legs, and placed my hands above my head. A nurse stuffed a panic button in my right palm, just in case. “No worries,” she said, promising to inch me in, a little at a time, to lessen the feeling of being swallowed whole into the belly of the machine. 

Already feeling claustrophobic, I instantly depended on the humanity of these strangers. I had to wear their ear buds and listen to orders from the technician (not my favorite playlist), who huddled somewhere behind us in his mission control center. “Listen to me, Maureen,” he started in my ear, “The better you can cooperate, the faster we can get you out of there.” He repeated this. No one here thought I was capable of understanding basic instructions the first time around.

They slid me in. By the time I was in up to my chin, I started to panic. The white curved ceiling felt as close to my face as a coffin. 

With eyes shut, I imagined a large, bland school clock so I could watch the time pass as I followed the instructions funneling into my ear: Hold your breath! Release! Hold your breath! Hold! Hold! Hold! Hold! Release! 

Unnerving noises blared out of the machine in adventurous gusts. Knocking, pounding, beeps and buzzers. I was in a cross-fire of magnetic fields. Next to my imaginary clock, I saw surgical-masked men sitting in a circle with their legs folded, creating this racket from a top secret location. Their tin drums and riffs revved up my heart rate thumping hard in my combustion chamber. 

“Try to relax,” my commander said in a soothing tone. “Slow it down.”

When the clock in my mind had reached 15 minutes of the 40 I had to endure, I convinced myself — I’m almost halfway there. I can do this

A ridiculously brazen jack hammer started up again, while I held my breath. 

“Release!”

“You are doing great,” the technician confirmed in my ear. “Almost done.”

Coming Back to Earth
As I waited for the blood test and MRI results, I remembered how Mom and I depended on our go-to nonmedical warning sign: the cancer look in the eyes we were so sure we could see in anyone who had it at that time. And later, I knew the pain behind Mom’s belly button, the one that darted straight through to her back, or the way she described a bagel sitting like a cement ball in her stomach, or iceberg lettuce — she couldn’t tolerate it — gave me her diagnosis before she saw a doctor. Twenty-five years after losing her, my heartbreak is still fresh. I see her blonde hair falling forward as she did the financials for Dad’s business, her perfect nose, or how she ran her finger down the stock market page of the newspaper until she stopped and smiled.

The geneticist called with results from the first set of tests. My blood work revealed I do not have the BRCA gene that might increase the risk of certain cancers, including breast. (It’s important to note that, according to the National Breast Cancer Foundation, less than 10 percent of women diagnosed with breast cancer have a BRCA mutation.) But, because of my familial inherited cancer history, I am considered a “Familial Pancreatic Cancer kindred.” Granted, screenings for pancreatic cancer are still in question, but like following a healthy diet and daily exercise routine, for me, screenings are a vigilant process that, quite simply, make me feel better — mentally and physically.

Dr. Fay Kastrinos, a gastroenterologist at The Pancreas Center and faculty member of the Division of Digestive and Liver Diseases at NewYork-Presbyterian/Columbia, has reported that about 10 percent of patients diagnosed with pancreatic cancer have a family history of cancer. Of these, about 3 percent have a family history “consistent with an unknown inherited cancer syndrome that includes pancreatic cancer such as breast cancer, melanoma or colorectal cancer syndromes,” while the remaining 7 percent have a family history only of pancreatic cancer. And, to date, physicians have not identified a prevalent gene mutation in familial pancreatic cancer.

The most comforting news is that as long as my husband doesn’t have the gene as well, it cannot be passed on to our children. 

Of course, all this doesn’t say that I will never get pancreatic cancer, or any other type of cancer that hangs from our family tree. 

My doctor called with the second set of testing, the MRI results. Something was found on my pancreas. Fortunately, it was a small benign cyst that we will be monitoring on an annual basis. No guesswork. No fabricating a new gill-bearing aquatic in my mind, sprouting suspicious growths, but a solid plan to follow.

And, here is another surprise from the MRI: the imaginary tadpole swimming at my side all these years since Mom died has been given the boot.

Marie Curie said, “Nothing in life is to be feared. It is only to be understood.” I use Curie’s words as a mantra. I’ve become entrepreneurial, nudging out useless demonic fish imagery and replacing it with my arsenal of medical data for a future fight, should I need it. I am more even keeled, more informed, more proactive — I have developed a new active galactic nucleus of sorts. It doesn’t mean that I will be able to prevent any of these cancers, or stop the most dreaded one of all. But my comfort lies in knowing I am doing everything in my power to prevent it. Being informed and managing my own health is a far better way to live. And, I have also come to learn that in Thailand, tadpoles, boneless and delicate, are eaten as an exotic dish.

 

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