Tuesday, April 5, 2011

Clinical Conversations

endocrine tumor specialists at the Mass General Cancer CenterFritz and Sally Ferbert.

Tips for being an empowered patient

  • Start with the basics: Try not to get overwhelmed or scared by the amount of information available.
  • Look for common denominators: There is false information out there, so look for patterns and repetition to find the truth.
  • Be an optimistic realist: Know what to expect, but don’t focus only on the negative.
  • Come prepared for your appointments: Be ready to discuss your results, treatment options and concerns.
  • Use your support system: Enlist loved ones in your research and bring someone along to appointments to record discussions and remember questions.
  • Never be afraid to ask questions or get multiple opinions: It’s your life; be sure to address every concern until you feel confident in your medical team and treatment plan. 

After a successful career in the high-stress, round-the-clock world of finance, Fritz Ferbert did what many people dream of: he retired young. He didn’t expect the fight of his life to begin just a few months later.

“I’ve known so many people who retire after a long career and it seems like their health fails and they’re not able to enjoy it,” says Ferbert. As an active 54-year-old, he was intent on avoiding that fate. He hoped to slow down a bit, devoting time to his family and the causes he loved, like his work on the board of the Special Olympics. He never imagined that the next chapter in his life would begin with a crushing diagnosis: esophageal cancer.

A shocking diagnosis

“I noticed a burning sensation in my throat sometimes when I drank red wine,” recalls Ferbert. “I knew my doctor would want to do a lot of tests, and I just didn’t have time for that with my schedule.”

As a younger, fit non-smoker who enjoyed only an occasional glass of wine and had no pre-existing conditions, Ferbert didn’t have any of the risk factors for esophageal cancer. He eventually went to his doctor, who recommended an endoscopy to check for Barrett’s Esophagus, which causes throat irritation due to stomach acid reflux. Neither Ferbert nor his physician expected to find cancerous lesions.

Ferbert and his wife, Sally, immediately began to educate themselves about esophageal cancer. At the start, Ferbert laughingly admits that he “truthfully wasn’t even sure what the esophagus did.” They soon became immersed in the topic, reading repeatedly about the importance of finding a surgeon who had performed a large number of esophagectomies – the procedure Ferbert needed to remove his cancer – and who had a low “leakage rate.”

“The ‘leakage rate’ refers to the percentage of patients who have gastric content leak from the esophageal anastomosis following esophagectomy,” explains Douglas Mathisen, MD, chief of thoracic surgery. “It’s a critical measure since patients who experience this complication can die, require additional procedures or have trouble swallowing for the rest of their life.”

The first surgeon Ferbert saw wanted to operate right away. Ferbert’s endoscopy had shown only superficial disease that the surgeon was confident could be removed using a less-invasive esophagectomy technique. He knew that the surgeon had a low leakage rate and performed a reasonable volume of esophagectomies. Still, he wanted a second opinion to confirm his plan.

“I went to see Dr. Mathisen at the Mass General Cancer Center because he performs a very large number of these rare procedures,” explains Ferbert, who admits to being nervous about asking for the surgeon’s leakage rate. “You feel vulnerable when you’ve been diagnosed with cancer –and it feels almost wrong to question the experts – but they won’t be offended. They’ll give you the information, and then you can make an informed decision.”

Bad news, good news

Dr. Mathisen reviewed Ferbert’s previous tests before referring him for an endoscopic ultrasound. The more detailed, three-dimensional results revealed that the cancer had actually spread to his lymph nodes, requiring chemotherapy and radiation in addition to surgery.

“It was bad news,” explains Ferbert, “but actually it was good news, too. Thank goodness Dr. Mathisen was so thorough. If I had rushed into surgery with the first doctor, he might not have discovered the extent of the cancer until during the procedure…or worse, afterward.”

Ferbert underwent two months of chemotherapy and radiation before his esophagectomy, embarking on a grueling treatment schedule that his doctors didn’t sugar-coat. Dr. Mathisen recommended a more invasive esophagectomy technique in Ferbert’s case, explaining that – while it was more complex – it also allowed him to be more thorough. It was going to be difficult, and it could take up to a year before Ferbert felt like himself again. Ferbert was confident in his surgeon. “When he said that he preferred to ‘do it right the first time’ and backed it up with a zero-percent leakage rate I knew I had made the right decision.”

Three years post-treatment, Ferbert’s scans remain cancer-free. He describes the year of treatment and recovery as a “rugged course” but feels lucky to be back to “about 95% of what he was physically” before his diagnosis. He credits his supportive wife, family and his medical team for collaborating so strongly to ensure the best possible outcome. Now he’s enjoying the retirement filled with travel, charity work and family time he had hoped for, complete with the birth of his first grandchild (with two more on the way!) Grateful for the chance he’s been given, Ferbert shares advice for other patients receiving a daunting diagnosis:

“Don’t be afraid to ask questions – to get all the facts so you can be confident in your course. It’s your life; what else do you have to lose?”

Back to Top