An emotional proposition for cancer survivor

As a five-year survivor of anaplastic pancreatic cancer, Jim Smith belongs to a small group of people to have reached the important milestone. In the years since receiving the life-threatening diagnosis and ensuing lifesaving treatment at Mayo Clinic, the trauma has begun to fade into memory.

Jim, a medical doctor and married father of two grown daughters, lives in Omaha, Nebraska, and works at Creighton University School of Medicine. He has finally begun to ponder how his future might look and can once again envision long-range plans without the looming specter of recurrence. Yet for the many days and months that lay between the present and his 2017 diagnosis and treatment, a worrisome feeling still haunts Jim whenever he returns to Mayo Clinic in Rochester, Minnesota, for follow-up testing and care.

“THE TYPE OF CARE AT MAYO — WHERE EVERYONE IS ON THE SAME PAGE, EVERYONE KNOWS I’VE CHECKED INTO THE LAB — IT WORKS REALLY WELL, AND FOR ME THERE IS NO OTHER WAY I WOULD RATHER DO IT,” JIM SAYS.

“But as the visits stretched from month to month and then a couple of times a year, I began to perceive anxiety in the weeks leading up to the visit to Mayo. And in talking to my wife and trying to pinpoint it, it was the blood test that was the source.”

That test, a serology evaluation performed by Mayo Clinic Laboratories (Mayo ID: CA19) assesses levels of carbohydrate antigen 19-9 (CA-19-9), a biomarker associated with pancreatic cancer.

“The CA19-9 test represents looking at what’s under the surface,” Jim says. “It’s like the shark in the water that you can’t see. You don’t know what it is going to say and that’s tied into what I am thinking.”

Beating the odds

Jim was thrust into a world of unknowns in the fall of 2017 when he was diagnosed with what was thought to be metastatic pancreatic cancer. At the time, his local care team informed Jim that the cancer’s advanced stage and infiltration beyond his pancreas into his spine, lungs, and spleen excluded surgery as a treatment. He was offered chemotherapy to extend his life and was advised to begin making final arrangements.

The news was beyond devastating. Jim recognized if his time had truly come, he did not want to drag out the inevitable. However, his wife Melanie was not willing to accept that fate. So, with Melanie’s encouragement, Jim requested an appointment for a second opinion at Mayo Clinic. It made sense, says Jim, since Mayo Clinic Laboratories had already evaluated biopsy samples of his tumor cells that had been submitted by his medical team in Omaha.

Although the tumor was obviously malignant, what wasn’t clear was its point of origin. “Was it pancreatic, was it GI, was it something for which there would be targeted therapies?” Jim says. “That was never fully determined until I had the surgery and the whole tumor came out.”

The operation to remove the tumor, a Whipple procedure, or pancreaticoduodenectomy, involves removing the head of the pancreas, the duodenum, the gall bladder and bile duct, and then reconfiguring the upper digestive system. In Jim’s case, his spleen was also removed.

Following the January 2018 operation, Jim learned his tumor’s classification was anaplastic pancreatic cancer. According to Keith Bible, M.D., Ph.D., Jim’s oncologist at the time, that cancer was quite unique and very deadly.

“These undifferentiated, or anaplastic, pancreatic cancers are distinctly rare,” Dr. Bible says. “This is a super high-risk, very aggressive pancreatic cancer.”

Despite the initial outlook, the entire tumor was resected, and the tumor margins were deemed clear. Jim’s lymph nodes and spleen were also unaffected by disease.

Jim retuned to Mayo Clinic a few months after surgery for follow-up testing, including a lung biopsy and abdominal imaging. Both were clear of cancer cells. Each time Jim has returned to Mayo for follow-up care, his tests have been negative.

Emotional repercussions

Despite years having elapsed since diagnosis, emotional turmoil related to laboratory testing is entirely normal, says April Studinski Jones, a genetic counselor with Mayo Clinic Laboratories.

“Someone who’s been through that might think, It was a pretty big bullet I dodged,” Studinski Jones says. “But I think there’s a piece of them that’s always wondering, Did I really dodge that bullet, or did I just get a temporary reprieve?”

Especially for patients with pancreatic cancer, which typically does not have a good prognosis and is frequently fatal, anxiety about the future could remain indefinitely, according to Studinski Jones.

“Those feelings stay with them, feelings of, What would I do if I had this diagnosis again or if I wasn’t in remission? Or, Would I choose to go through treatment again?” she says. “Because they’ve experienced that already and know first-hand, they might worry whether the treatment is going to extend their length of life or about the impact it will have on their quality of life. I think that’s a big worry.”

For Jim, knowing he’ll have access to his test results within hours of undergoing his blood draw calms his anxiety.

“Mayo has a system where the lab results are released to the patients as soon as they’re available, so I would get the result almost always before my providers, and literally within the first few hours I would have access to these values, and it was tremendously reassuring to see the where the CA 19-9 had been,” he says.

Jim also appreciates how at Mayo Clinic, his needs have remained the focus of each component of his care, from laboratory testing to imaging and follow-up appointments.

“Each of these numbers is tagged to a human being with a narrative that swirls around what the lab value is and what that laboratory test result means to the family,” Jim says. “The value of that number is huge. It’s not just a diagnosis — these lab tests fit into an individual’s story. The laboratory professionals at Mayo, they participate in what may be a patient’s and their family’s worst day as well as perhaps their best day or one of their best days, and that can be lost. These tests are not value neutral, they mean something, and they mean something different for different patients.”

The path forward

Jim is well beyond the time frame for expected remission — pancreatic cancer typically recurs within the first 24 months of initial diagnosis — and at this point he’s more likely to develop a completely new type of cancer than experience a return of his pancreatic cancer.

But if the cancer does return, there will be a new treatment path available to him, as Jim says the genetic testing performed on his tumor specimen when he was first diagnosed in 2017 revealed a variant for which targeted therapy has since become available.

“I THINK THE SUPERIOR CARE WE OFFER PATIENTS IS AIDED BY THE PARTNERSHIPS THAT WE SEE BETWEEN THE CLINICAL PRACTICE AND THE LABORATORY PRACTICE. PATIENTS WHO COME TO MAYO CLINIC HAVE ACCESS TO THOSE LABORATORY SERVICES,” STUDINSKI JONES SAYS. 

Sharing his story with other patients facing a pancreatic cancer diagnosis has also helped Jim manage the strong emotions that arise when thinking about how far he’s come and the path still ahead.

“We cannot escape our human existence, we are all faced with this,” he says. “It’s a very personal and sometimes very private journey toward the end of life, but it’s important to understand that we don’t have to be alone with it, and it doesn’t necessarily have to be a secret, so let’s not be afraid to talk about it.”

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