Kathy’s Story: Living Better with Mesothelioma – Possible with the Right Team of Experts

Kathy Ebright was enjoying life with her husband, 2 kids and 7 grandchildren in rural Pennsylvania, when everything changed suddenly.  This is true for thousands of people fighting cancer across the world, but hearing the word “mesothelioma” is not common.

“I went numb, I might have said a few words, but I couldn’t put words together to speak,” Kathy said.

Kathy and her husband, Doug

Almost everyone has been touched by cancer, but Kathy and her husband didn’t know anyone with mesothelioma in their small town of Richfield. They only heard of the disease from commercials for lawyers who specialize in asbestos lawsuits.

Kathy’s mesothelioma was discovered during a scan of her abdomen, which she has regularly to monitor a heart condition.  Her vascular doctor saw unusual spots on her scans, which her primary care doctor and oncologist reviewed, and they determined it was pleural mesothelioma.  This means the cancerous cells are located in the chest cavity, and sometimes the lung.  Usually, those with pleural mesothelioma experience shortness of breath, but Kathy was lucky enough to catch her mesothelioma before experiencing any symptoms.

Kathy’s daughter, Ally, who works with the tumor registry at the Geisinger Medical Center, sprang into action after the initial shock.  They attended tumor boards at Geisinger, where physicians from multiple disciplines (radiation, medical, and surgical oncology) meet to discuss cases.  Kathy’s medical oncologist, Dr. Rajiv Panikkar, suggested to Kathy that she go to the University of Maryland Greenebaum Comprehensive Cancer Center in Baltimore, where she would see a team skilled and experienced in the most novel treatments for mesothelioma.

On December 20, 2015, about a month after her initial diagnosis, Kathy had her first appointment with Dr. Joseph Friedberg, a nationally known expert in mesothelioma and head of thoracic surgery at the University of Maryland Medical Center.

Kathy and her family were nervous, but mesothelioma nurse navigator Colleen Norton helped them navigate the unfamiliar and frightening process of a mesothelioma diagnosis.  She made sure they were prepared for their appointment beforehand, and Colleen even handled authorization with their health insurance company.

“We just felt we were along for the ride because Colleen always had everything taken care of,” said Kathy’s husband Doug.

And they were just as impressed with Dr. Friedberg, who was calm, reassuring and explained Kathy’s situation very clearly.

“On the back of his folder, he hand drew a lung to display what was going on with me, and it could’ve been taken right from a textbook it was so good,” Kathy said.

Kathy’s granddaughter, Carleigh, who serves as her main cancer-fighting motivator

They were also impressed with Dr. Friedberg’s tenacity and understanding.  Kathy wanted to spend Christmas with her family, but Dr. Friedberg didn’t want wait too long to perform the lung sparing surgery.

Her surgery was scheduled for January 5, 2016.

Throughout the surgery, Kathy’s family couldn’t have been more comfortable and informed.

“We camped out in the Healing Garden just about the entire time,” Doug said. “Melissa Culligan, Dr. Friedberg’s nurse, was in and out of the operating room, updating us every two hours.  We were never left wondering how Kathy was doing.  We also had the option to call into the operating room if we had any questions.”

During Kathy’s recovery in the hospital, she said the nurses were “phenomenal.”  Colleen also came to see her several times a day, and they added a La-Z-Boy to Kathy’s room so her husband could more comfortably spend the nights with her.

While there is no cure for mesothelioma, yet, Kathy and her family couldn’t be happier to have the UMGCCC team in their corner.  She now returns every 3 months for the next 2 years for check-ups, and Dr. Friedberg describes her scans as “pristine.”

“It’s very reassuring to know we have such caring people looking out for my health,” Kathy said.

Learn more about the Mesothelioma and Thoracic Oncology Treatment Center at the University of Maryland Marlene and Stewart Greenebaum Comprehensive Center by clicking here, or calling 410-328-6366.

Living with Mesothelioma: A New Normal

In December of 2007, Timonium resident Jen Blair was pregnant with her second son, Kevin. It was a “very painful pregnancy.” She went to a few doctors, who told her the pain was normal. The pain returned, “worse than ever,” six weeks after giving birth to Kevin.  More doctors. More tests. She was first told she needed laparoscopic surgery, then that she had stage 4 cancer in her abdomen. She was told to get her affairs in order.

It turns out Jen had peritoneal (in the abdomen) mesothelioma, in which cancer cells are found in the membranes around organs in the abdomen. This is very rare — only about 350-500 cases are diagnosed annually in the US – and the five-year survival rate is just 16 percent.

“It was overwhelming,” Blair said.

Now that she knew what she was up against, it was time to find a doctor.
Her brother did an Internet search of the best Mesothelioma doctors, and up popped H. Richard Alexander, MD, an internationally recognized surgical oncologist and clinical researcher at the University of Maryland Marlene and Stewart Greenebaum Comprehensive Cancer Center (UMGCCC). UMGCCC is only a half hour from her house, but Blair said her choice had much more to do than travel time from home.

“Dr. Alexander’s team was incredibly supportive,” Blair said. “When I called with literally dozens of questions, some of which, thinking back now, were ridiculous, they always took time to give me an answer. That really impressed me.”
Just a week after calling UMGCCC about her condition, Blair met with Dr. Alexander.  After an examination, Dr. Alexander told Blair that she was a candidate for surgery. For surgery to be an option in  treating mesothelioma, it has to be considered a safe operation, and the disease has to be confined to one area. Blair decided to have surgery.

“That one decision changes everything for a patient,” Blair said.  “Not all doctors specializing in mesothelioma have the patient’s best interest at heart.”

Many doctors, Blair said, are motivated by money.  She said she’s heard horror stories from other mesothelioma patients, where doctors demanded an upfront sum of money—sometimes adding up to hundreds of thousands of dollars—before operating.  But not at UMGCCC.

In March 2008, Dr. Alexander performed surgery with HIPEC (hyperthermic intraperitoneal chemotherapy), which uses heated chemotherapy in combination with surgery to treat cancers that have spread to the abdomen lining.  While surgery to treat mesothelioma isn’t a cure, Jen’s quality and quantity of life have been greatly improved.

Blair was virtually pain free for more than seven years after the surgery, and was able to spend time with her family, and watch her two sons, Kevin and Nick, as they grew up. She had a second surgery with HIPEC in March 2015, and more than a year later, suffers very few episodes of pain.

While the days are still hard and life won’t ever be normal, Jen says it’s a huge relief having Dr. Alexander and his team in her corner.

“Dr. Alexander is hopeful, but realistic,” Blair said. “That’s important.”

Jen now works as a volunteer at UMGCCC, comforting and supporting other patients going through the same things as her.  She also works closely with the Mesothelioma Applied Research Foundation, which is a non-profit “dedicated to ending mesothelioma and the suffering caused by it, by funding research, providing education and support for patients and their families, and by advocating for federal funding of mesothelioma research.”

Learn more about the Mesothelioma and Thoracic Oncology Treatment Center at the University of Maryland Marlene and Stewart Greenebaum Comprehensive Center by clicking here.