Milos Bogetic has been a patient at Duke Cancer Institute (DCI) for nearly two years now. He’s been dealing with cancer for nearly five. “My experience at Duke,” he said, “has been nothing short of extraordinary.” It has changed his family’s outlook and has given the stage 4 cancer survivor precious extra time with his wife and growing young son. He recently reached out to DCI to share his cancer journey and extend his gratitude to his care team at Duke, most especially John Strickler, MD, and Christi Fronczkiewicz, RN.
Takes the Cake
Milos Bogetic’s toddler son Teddy is already measuring in the 100th percentile for height. “I think he might have a decent future in it (basketball)… maybe even play for Duke.”
Teddy celebrates his first birthday
Bogetic Family, Christmas 2020
Milos Bogetic, 35, was born in 1985 in Sarajevo, Bosnia (then part of the Socialist Federal Republic of Yugoslavia) barely a year after the Winter Olympics were held in the picturesque mountain town. Around the age of six he and his 11-year-old brother and parents headed south for a five-day vacation to his father’s village in neighboring Montenegro. On the way back home, they phoned his maternal grandmother in Sarajevo to let her know when they’d arrive. She told them to turn back. There was shooting in the city.
Soon the border between the two republics was shut down. Five-days later a full-blown sectarian war broke out. Another family moved into their apartment. What would come to be known as the Bosnian War would rage for five years. Yugoslavia would be torn apart. He would never see his home again.
“We escaped by sheer luck. We knew there was tension, but we thought it was never going to spill over into actual war,” recalled Bogetic. “We had two carry- on bags in a new country. Thankfully, my father had some family who were able to help us get started again. But we lost all of our stuff and apartment and everything.”
At 16, Bogetic, who’d grown to be 6’10”, started playing professional basketball in Slovenia. For two years the academically gifted and driven athlete traveled the 500 miles back and forth between Lubljana and Podgorica to keep up with his studies. His commitment both to basketball and education would ultimately land him a new future across the ocean.
East to East
“I was an athlete nearly my whole life — being quite tall, basketball was my sport,” said Bogetic. “Some agents started picking up my playing and got in touch with universities in in the U.S. I received several offers (with scholarships), but Penn State was the only one whose coaches came to visit me back home in Montenegro and meet my family, so I went with them.”
He arrived there in June 2005 — nearly 20 years old and ready to get a head start on college classes and training for NCAA Division I basketball.
In an interview at the time with the university news office, he said, "This is a dream for me, playing college basketball. Basketball players in my country have two options. Turn pro and play in any number of leagues in Europe or come to the U.S. and get an education. For me, this is the right choice."
In 2007, he transferred to Mercyhurst University in Erie, Pennsylvania, where he played basketball there for two years. Planning for a career in international business, he would earn a BA in Finance (2009) followed by a master’s degree in Organizational Leadership (2011) and a second bachelor’s degree, this time in Computer Information Systems.
After earning his second BA, he spent the summer with his girlfriend Trish on Cape Cod. The couple had first met a year before, in 2011, in Provincetown, Rhode Island, where he was working for the summer between semesters. Trish, a flight attendant for Air Canada, was in town on a three-day layover for the Toronto-Boston-Toronto route.
The couple kept up a largely long-distance relationship and in the fall of 2012 moved south to Atlanta for a fresh start together. She took a job at a non-profit that empowers women and he was hired as a senior accountant with Emory University Research. On January 1, 2013, they got married.
Happy with life in Atlanta for the next three years, the Montenegrin and Canadian transplants were decidedly rooted in the U.S. Trish, a Canadian citizen with long-time U.S. residency, had since become an American citizen. Bogetic had just applied for American citizenship. They planned to stay and start a family.
But in June 2016, Bogetic got sick.
“I started feeling acid reflux every morning. I was taking Tums, which was helping, but one morning I was eating a sandwich and a piece of bread got stuck in my throat. I had to drink water to swallow it. I knew I had to see a GI doctor,” shared Bogetic. “My doctor was very confident that I, a healthy, athletic 30-year-old, could only have acid reflux, an ulcer at worst.”
The doctor ordered an endoscopy just to be sure.
When Bogetic woke up in post-op his wife was standing next to him and a nurse was present.
“I asked, ‘How did it go?’” Bogetic recalled asking the nurse as came out of anesthesia. “And she said, ‘The doctor will be in soon.’ So that was kind of my hint that it wasn't flawless. And, you know, when the doctor came in — he was quite a young doctor, I would have guessed likely not too far from exiting his fellowship — he was pretty bummed out, you could see. He said, ‘I’m sorry to have to tell you this, especially since you’re so young, but you have cancer. Esophageal cancer.’ I found it comical that, you know, such huge life changing news was being delivered in this six-by-six room that was only giving us privacy with its curtains … all the patients in the room next to us were hearing what was being said to us.”
The median age of an esophageal cancer patient at diagnosis is 67. Bogetic was decades younger.
“It was surreal. You go in thinking they're going to send you home with ‘it's an ulcer,’ and you come home looking at 8% chance of survival. And that’s pretty bad.” [According to the National Cancer Institute, the overall five-year survival rate for esophageal cancer patients ranges from 5% to 30%.]
Esophageal cancer is a rare cancer, but rarely curable. While it accounts for only one percent of cancer diagnoses in the U.S., it causes a disproportionate percentage of cancer deaths — 2.7% of all cancer deaths and 4% of cancer deaths in men, who are three times as likely as women to develop this type of cancer.
Based on the pathology report, Bogetic’s official diagnosis was adenocarcinoma of the esophagus. A subsequent PET scan showed his cancer was already stage 3; having penetrated the walls of his esophagus and spread to at least 11 nearby lymph nodes. The biggest risk factors for getting his type of esophageal cancer are gastric reflux, Barrett’s esophagus (a condition in which the esophageal lining is visibly damaged by acid reflux), and obesity. Acid reflux issues run in his family, Bogetic said, but no one had gotten Barrett’s esophagus or cancer from it.
“Naturally, after the shock wore off, we searched for the best doctors our health insurance could buy,” said Bogetic.
After a couple of consultations with top cancer specialists in the area, he settled on Emory, where he worked.
For the next three months that summer, he underwent six rounds of chemotherapy (paclitaxel and carboplatin) and 28 radiation treatments.
Concurrently, he started treatment with Herceptin (trastuzumab), which targets the HER2 protein, after genomic sequencing of his tumor tissue revealed he was HER2-positive. In normal cells the HER2 pathway is a biological pathway involved in cellular replication and growth. When a patient’s cancer cells are HER2-positive, it means that there’s too much of that protein on the surface of the cancer cells. This drives aggressive cancer cell replication. Approved first in breast cancer in 1998, and approved in 2010 in gastro-esophageal cancers, Herceptin is designed to stop this or slow it down. [An estimated 15 to 30% of breast cancer patients and 10 to 20% of gastroesophageal cancer patients are HER2-positive.]
The tumor in his esophagus shrunk significantly — enough to greenlight an esophagectomy on Nov. 3, 2016. His surgeon removed his esophagus and performed a gastric pull, attaching his stomach to his throat, and also removed 27 nearby lymph nodes, most of which had signs of cancer. The high-risk surgery was a success.
For the next six months his scans were clear. Then, a scan in May 2017 revealed a single cancerous lymph node in his abdomen. Another surgery wasn’t advisable. Instead, his care team went after it with a much heavier chemotherapy cocktail than the first time around — 5-FU (5-fluorouracil) and capecitabine (brand: Xeloda) and cisplatin and paclitaxel again, plus four radiation treatments.
He wore a fanny pack with an infusion device, even to work, and lost all of his hair.
“That was a very, very tough treatment,” said Bogetic. “I did all six rounds, but I ended up in a hospital a couple times with a fever of 103, zero blood cells — being neutropenic (having an abnormally low count of a type of white blood cell) and it wasn't a very pleasant experience,” shared Bogetic. “But once again, my body responded greatly to the treatment and the cancer was completely eradicated from that lymph node. In August, the scans showed all clear.”
Bogetic rebounded. He got busy getting his mind off having cancer while continuing to stay on a maintenance regimen of Herceptin and capecitabine (brand: Xeloda). After more than a year cancer free, Bogetic and Trish found themselves in “calm waters.”
“Even the most pessimistic of doctors started wondering if I somehow managed to tear myself out of the grips of certain death,” he added. “Encouraged by this rare positive outlook, my wife and I decided to try again to have a family.”
Trish underwent IVF using sperm they’d banked before Bogetic’s first cancer treatment. The procedure worked the very first time. With a baby on the way, everything was falling into place.
Trish had recently gotten a new job at Cox Enterprises. Bogetic was offered a position in the international IT group at Chick-fil-A, Inc.’s corporate headquarters.
“It's a pretty exclusive company to get into. So, when I got in here was no doubt that I was going to go for it,” said Bogetic. “All of a sudden, we went from being just a couple not knowing what the future holds, to starting these new careers and expecting a baby, so much excitement that we even went on a cruise to Morocco, Spain and Portugal to celebrate New Year’s.”
Bogetic admitted he wasn’t 100 percent during the cruise due to side-effects of his ongoing cancer treatment. He was vomiting almost daily. He also contracted the painful hand-foot syndrome.
Despite this, they came back from the cruise refreshed, with Bogetic excited to start his new job at Chick-fil-A the following month.
A week before his start date, his jaw started twitching. He immediately called an ambulance, suspecting he was having a stroke.
“They told me that it was likely nothing, just a twitch, but just to be sure, based on my history, that they would run a CT. Then they saw a shadow on the surface of my brain and I went immediately for emergency brain surgery,” recalled Bogetic.
The small cancerous lesion was removed. Following surgery, he underwent just three radiation treatments.
Fortunately, Chick-fil-A put him on the payroll immediately so he would have health insurance. He was told to take as much time as he needed to recover.
“When the cancer came back for the third time, I was devastated,” shared Bogetic. “I had given the battle my all, but it seemed as if there was no defeating the menace that refused to depart my body.”
He was 33 years old, five months away from meeting his son, seven days before starting his new job, and now facing stage-4 cancer.
According to the NCI, metastasis of esophageal adenocarcinoma to the brain or spine is rare, but increasing, and carries a poor prognosis.
“All my oncologists started approaching my case as if it were a matter of months before I no longer existed,” shared Bogetic. “I had an instinct that this wasn’t the end of the road, as bad as it seemed. Make no mistake, I never wanted anyone to sugarcoat my chances. I didn’t ask for handholding, I only wanted to feel as if I mattered. I needed to find someone experienced and knowledgeable who was interested in my case.”
He decided to seek second opinions outside Atlanta.
“I kind of went on a road show,” said Bogetic, recounting his travels to top cancer centers from the southwestern to the northeastern United States. He even arranged a video call with a specialist at the Oxford Cancer and Haematology Centre in England.
They all said that not much more could be done. At one institution, he was connected with a clinical trials team, but because his cancer was in remission, he couldn’t qualify for any of the open trials.
While discussing alternative maintenance-drug treatments with another specialist, Bogetic felt like he’d hit a brick wall.
“When I mentioned a few studies that I had read, he got visibly almost offended that I would suggest something to him instead of the other way around,” said Bogetic. “And he ended the conversation saying, ‘You know, I've seen a lot of patients make it through that five-year mark, but I don't think I've seen anyone survive this cancer.’ And he left me with that.”
“Fix the New”
Bogetic walked into his appointment with Duke Cancer Institute GI oncologist John Strickler, MD, in April 2019, expecting more of the same.
GI nurse Christi Fronczkiewicz, RN, came and got him in the waiting room — on time, he said, which made a good first impression.
“Christi deserves her own story, but I must say that she was my first reason for thinking ‘This may just be my kind of place.’ She expressed how sorry she was that I was in the situation I was in, she asked questions, and most importantly, she cared,” recalled Bogetic. “When Dr. Strickler walked in, he was carrying a sticky note that Christi had handed him that said, “Fix the new!” which was her way of ordering the doctor to fix the new guy. Today, that note is tattooed on my arm, as it represents the very first time I felt that someone in the world of oncology saw me as more than a number.”
Strickler came prepared to take on Bogetic’s fairly complex, nuanced case. He’d requested all of the notes from Bogetic’s Emory care team and the specialists Bogetic saw at other institutions.
“He’d read them so thoroughly that he almost knew more about my case than I did,” said Bogetic. “First he told me, you know, ‘We have to be realistic. At stage 4 of this type of cancer, the outlook is generally not good, but you have the great advantage of being so young.’ As well as studying my history, he was able to see that the behavior of my cancer is somewhat different than traditional; it doesn't appear to be as aggressive… it’s not the smartest of cancers.”
Though it had recently spread to the brain, it was staying away from other major organs and didn’t appear to be present in any more lymph nodes.
“He kind of found a silver lining in those things, and they made sense. So, it pretty much gave me my will to keep fighting,” said Bogetic. “He didn’t sugarcoat anything, but he also remained realistic. He proposed biopsies and tests I didn’t even know existed. This was something I wasn’t able to find anywhere else.”
First, Strickler suggested that the cancerous tissue from his brain be biopsied, explaining that there was a chance his cancer had mutated (very common in cancer) and was no longer HER2-positive.
“These tumors change and evolve and when you've got a new lesion that's popped up, I think you need to surgically remove that lesion, and I think you need to reprofile it. HER2 is lost quite a bit in esophageal cancer when it spreads,” explained Strickler, who co-directs Duke Cancer Institute’s Molecular Tumor Board. “Milos went back (to Emory) and said ‘Dr. Strickler wants this reprofiled for HER2.’ … And I was apparently right that he lost HER2.”
Without the HER2 amplification, the Herceptin/Xeloda regimen was no longer useful. In some cases, Herceptin can be dangerous — causing heart damage.
“Milos was receiving ineffective treatment,” said Strickler. “We took him off those drugs and shifted him over to a slightly different immunotherapy strategy — a more intelligent use of existing therapies — and it's been wildly successful for him. He’s done extremely well.”
For about a year, Bogetic was traveling 500 miles back and forth to Duke for scans, labs and consults. When the COVID-19 pandemic hit, in-person consults with Strickler shifted to telehealth. Bogetic’s bloodwork and scans ordered by Strickler are now carried out at Emory. With travel remaining high-risk, especially for an immunocompromised cancer patient, this is still the case.
If the April scans are clear, Bogetic will discontinue immunotherapy and will be free of cancer drugs. Strickler will continue monitor him with bloodwork and scans every six months.
“I'm comfortable with that decision. I respect it. And I won't be insisting on anything else further. If he knows that this is the best approach, then I concur,” said Bogetic. “Hopefully nothing will come back and if it does, as Dr. Strickler says, it will likely be something that can be managed and not significant or beyond repair.”
Life is back to normal — as much as it can be during a pandemic — for Bogetic, his wife Trish and son Teddy who’s already a year-and-half old and growing up fast. In late October, the travel-fans squeezed in a road trip to Florida where Teddy splashed around in the pool and enjoyed his first trip to the beach.
“He is our joy,” said Bogetic.
Bogetic is now in a leadership role at Chick-fil-A. With encouragement from Strickler, he recently began a PhD program in business administration and strategy at the University of the Cumberlands. It will take him five years, but he’s hopeful he has that time to give.
“I'm feeling great these days, honestly, very little to complain about,” he said. “I have Duke to thank for giving me my dreams back. Most importantly, I am forever in debt to Dr. Strickler and Christi for giving me my time back.”
Grateful for the unexpected “buzzer beater.”
ESOPHAGEAL CANCER FACTS
Men are three times as likely as women to develop esophageal cancer.The American Cancer Society estimates that more than 15,000 of the 19,260 new diagnoses in 2021 will be in men.
Only one percent of cancers diagnosed in the U.S. last year were cancers of the esophagus, but esophageal cancer caused 2.6% of all cancer deaths. (4% of cancer deaths in men)
The overall five-year survival rate in patients amenable to definitive treatment ranges from 5% to 30%.
Metastasis of esophageal carcinoma to the brain or spine is rare, but increasing, and carries a poor prognosis.
There are two types of esophageal cancer — adenocarcinoma and squamous cell carcinoma.
Rates of adenocarcinoma of the esophagus in the U.S. have increased in the last 20 years and have now eclipsed squamous cell carcinoma of the esophagus.
Adenocarcinoma of the esophagus begins in the glandular cells in the lining of the lower part of the esophagus near the stomach.
The biggest risk factors are gastric reflux, Barrett’s esophagus (a condition in which the esophageal lining is visibly damaged by acid reflux), and obesity.
Esophageal Squamous Cell Carcinoma
Squamous cell carcinoma forms in the thin, flat cells lining the inside of the esophagus. This cancer is most often found in the upper and middle part of the esophagus, but can occur anywhere along the esophagus.
The biggest risk factors are use of tobacco in any form and heavy use of alcohol over a long period of time.
Make An Appointment
- To make an appointment with a DCI GI oncologist in Durham, NC, please call 919.660.9673.
- To make an appointment with a DCI GI oncologist in Raleigh or Cary, NC, please call 919.862.5400.
Duke Center for Brain & Spine Metastasis at DCI
- For questions or referrals related to patients with brain or spine metastasis, please email new patient coordinator Eris Worlds or call her at 919.681.3038.
- For brain or spine metastasis referrals within Duke, clinicians may submit via Ambulatory Referral to Brain & Spine Metastasis Center on Maestro Care or (REF468).