Contributing Writer
Julia Brabant
August 6, 2024

Diagnosed: July 2018
Current Status: taking precautions to maintain his health

Self-Advocacy the Key to Diagnosis for 6-Year Pancreatic Cancer Survivor Greg Adams

Greg Adams knew his family history was a ticking time bomb, with a grim lineage of pancreatic cancer casting a shadow over his day-to-day life. More than a third of his extended family members had lost their lives to adenocarcinoma of the pancreas, with each relative’s struggle serving as a haunting reminder of Greg’s own possible fate.

Armed with the knowledge of his extensive family history, Greg asked 21 different doctors to conduct some type of test for the disease over the course of six years. Each declined, with many dismissing his concerns, stating that they couldn’t justify ordering tests for something they didn’t think he had—in spite of his family history. Ultimately, it was Greg’s own self-advocacy that led to the discovery of his pancreatic tumor, and now, six years later, he’s sharing his story with the hope of highlighting the power of persistence and encouraging others to advocate for themselves.

Greg’s bout with pancreatic cancer began in 2018, as he and his wife of almost 40 years planned an anniversary trip to Italy. Pain in his abdomen had Greg thinking he might have food poisoning, but upon visiting the emergency room and sharing his symptoms, the doctor sent him to the cardiology department for a heart attack assessment.

This wasn’t the first time that ER sent Greg to cardiology for abdominal pain. In fact, it was the fourth, with each visit ending with the cardiology department telling him there wasn’t anything wrong with his heart. Greg wasn’t surprised, as he never thought there was – but on the way to his fourth scan, the ER’s medical director stopped him to see how he was feeling.

Greg expressed his concerns about how doctors kept sending him to cardiology despite having no obvious heart-related symptoms. At his urging, they finally decided to take things a step further, ordering an ultrasound to try to determine the true cause of his pain.

The ultrasound revealed a mass on Greg’s pancreas, and doctors determined he had Stage 4 pancreatic cancer. They estimated he had less than a 1% chance of survival, and only a 50/50 chance of making it to Christmas six months later.

Seeking second (and third, fourth, fifth and sixth!) opinions

“The hospital system suggested I go home and get my affairs in order,” Greg said. “I did go home and began getting my affairs in order but was unwilling to accept their prognosis.”

Instead, Greg chose to seek out additional medical opinions, consulting with six major cancer centers. After speaking with each, Greg’s chances of making it until Christmas rose to about 2%. (“On the bright side, I was able to say that my odds had doubled!” he said.)

Greg ultimately chose to work with a provider that took a “team approach” to treating cancer. The selected team members also gave Greg their personal cellphone numbers, which he saw as a good sign. Greg and his wife, Patty, also appreciated the honesty of Greg’s surgeon, even when the news wasn’t great.

The surgeon told Greg that, because of the placement of his tumor against the arteries behind it, he was not a candidate for surgery – but the team had plans in place for how he might get there.

Greg’s care team decided to start Greg on chemo with the hope that it would shrink his tumor enough for it to became operable. His oncologist offered him two distinct chemo regimens, and he chose to undergo treatment using FOLFIRINOX, which was the stronger option of the drugs offered.

Before starting chemo, though, doctors had to install a port through which to administer chemical infusions. While the installation seemed to work fine initially, Greg awoke the next morning with five blood clots in his shoulder and arm. He returned to the ER and had an ultrasound to confirm the clots, and they began treating him with Heparin, an anticoagulant.

Navigating complications

Greg went home after the initial blood clot emergency but returned two days later when blood began hemorrhaging into his chest cavity from the port’s insertion point. After the hemorrhaging settled down, Greg’s port incision refused to heal, swelling and turning black, blue, grey and orange.

This delayed matters, as the hospital’s staff was unable to move forward with infusions. The fear was that moving forward could cause Greg’s care team to miss the “sweet spot” for the chemo chemicals and dump chemo into his chest cavity, rather than his bloodstream, where they could prove fatal.

Concerned about delaying chemo, Greg asked the hospital’s three best chemo nurses to state independently where they thought they should administer the medication. If all three agreed, they’d try to get the needle into the port. All three nurses did agree, and chemotherapy resumed.

The rest of Greg’s chemo treatments occurred largely without incident, although he did have “normal” chemo side effects, like nausea, insomnia, fatigue and loss of appetite. A CT scan two weeks later showed that his tumor had shrunk by 30%, but the tumor was still leaning against the blood vessels behind the pancreas. However, the shrinkage qualified Greg for radiation, which his medical team hoped would help separate the tumor and the blood vessels.

Exploring new treatment options

Greg’s radiologist asked if Greg might want to participate in a new, experimental radiological treatment that sought to compress a traditional 30-day treatment into just five days. The new clinical trial wasn’t set to start for several months, but they added Greg early, entering him as “Patient 1.”

The trial involved using an MRI machine to scan the body, identify the tumor and then target it directly while avoiding “healthy” areas. Greg believes it played an important part in getting his body ready for surgery, shaving about a month off of his wait time. The process also shrank the tumor to the point where it detached from the blood vessels, meaning Greg’s team could move forward with surgery.

Undergoing surgery

Greg had a Whipple procedure, an extensive surgery also known as a pancreaticoduodenectomy. The surgeon removed Greg’s gallbladder as well as the bottom of his stomach, his pyloric sphincter, his duodenum and the top of the small intestines. The doctor also had to resect the head and neck of the pancreas to remove the tumor on top. Since the tail of the pancreas looked good, doctors said, Greg’s spleen could remain.

Once they got to the pancreas, Greg’s surgical team realized something was preventing them from accessing and cutting out the diseased portion. It turned out that, while scans didn’t show it, Greg’s tumor had grown through the pancreas, out the back and into the blood vessels behind it. Had his team seen this, Greg never would have qualified for surgery in the first place.

In 2019, the protocol for this event was to close the patient back up and send him or her home to palliative care. Instead, Greg’s surgeon decided to confer with his team to see if anyone had any ideas for how to get out of this bind. A young resident asked if the team could use blood vessels already removed from Greg’s body to rebuild the vascular tree the tumor had invaded behind Greg’s pancreas.

This had never been done before, though, and no one on the team was a vascular surgeon qualified to do it. The young intern then addressed both concerns, noting that Greg had given explicit
permission both in writing and in person for the surgical team to do anything necessary to help him survive. She recommended getting a vascular surgeon on the phone to walk the team through the procedure.

The team did just that, and the repairs began, with the operation ultimately proving successful.

Yet, three days later, Greg got some bad news. A detailed biopsy of the removed tumor showed that cancer cells remained in the tail of Greg’s pancreas, and those cells were actively metastatic, spreading throughout Greg’s abdominal cavity.

Greg’s surgeon suggested they try a second Whipple in a few months, once Greg had some time to build back strength. That proved difficult, though, as the Whipple compromises the ability to eat and digest food. Eventually, he was able to put on enough weight to move forward with the second Whipple.

During the second procedure, Greg’s doctor removed the tail of his pancreas along with his spleen and more of his small intestines. Because cancer cells had spread throughout the abdominal cavity,
everything was taken out, emptying the entire area. This included removing all of the interstitial fat and entire abdominal lymphatic system. Doctors then scrubbed the empty cavity with sponges full of FOLFIRINOX chemo chemicals before putting the intestines and colon back in.

Recovery was rough the second time around, but Greg found that working with a therapist helped him combat the emotional and psychological challenges associated with it. Greg began having
post-surgery chemotherapy about three months after the second surgery, but he encountered several complications along the way, including low white blood cell counts and a weakening immune system. He also had a bile duct blockage that became infected, ultimately progressing into sepsis.

Adjusting to life, post-Whipple

Despite these challenges, Greg pulled through, and now, six years later, he continues to adjust to his “new normal.” He lives as a brittle, Type 3C diabetic and can become hypoglycemic and hyperglycemic multiple times in the same day. He is also immunocompromised, requiring constant vigilance to maintain his health.

Greg also has considerable neuropathy, which about two-thirds of chemotherapy patients experience. He also takes in excess of 700 pills a month, many of which include digestive enzymes like CREON.

Advocating for others

While Greg takes care to maintain his strength and health, he also wants to make sure no one else in his family gets the runaround like he did when he first began seeking a test for potential pancreatic cancer.

“I’d asked 21 doctors for any test whatsoever,” Greg said, noting that chronic fatigue and heart flutters well ahead of his diagnosis had him suspecting something was amiss. “A CT, ultrasound, CA-19-9, etc. The CA-19-9 only costs $38 retail, but you can’t get it without a script. All refused; saying, ‘Greg, you’re as healthy as a horse!’”

Greg found that his family members from across the country were having the same problem despite their extensive history of pancreatic cancer. When the genetics department at the University of Michigan learned of the family’s plight, they drafted a formal letter detailing the family’s genetic history.

Afterward, any physician in possession of the letter could face a malpractice suit for refusing pancreatic cancer testing. Since the university drafted the letter, no one in Greg’s family had their request for a test denied, and screenings revealed pancreatic cysts or growths in all tested relatives, allowing for early monitoring and treatment.

While Greg and his wife were ultimately able to take that 40-year anniversary trip overseas, they also had additional reasons to celebrate.

Greg’s advocacy didn’t just save his own life – it transformed his entire family’s approach to health care. While his efforts ensured his own survival, they also gave his loved ones the knowledge they need to identify and treat pancreatic cancer early on, ensuring a legacy of resilience and proactive health management that extends far beyond his own.

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