Cancer Specialists Reflect on Mesothelioma Awareness Day

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Mesothelioma Awareness Day takes place every year on Sept. 26, when those affected by asbestos-related diseases band together to shine a light on this rare cancer.

A day dedicated to spreading information about mesothelioma benefits everyone, from newly diagnosed patients to the friends and families of survivors and those who have died.

Unfortunately, many people are still unaware of the dangers of asbestos exposure, and don’t realize that the United States hasn’t yet entirely banned the toxic mineral.

“Mesothelioma is only about 1% as common as lung cancer, but portends poor prognoses and is often diagnosed at later stages,” said Dr. Charles B. Simone, radiation oncologist and chief medical officer at the New York Proton Center.

“There is a lack of awareness, and symptoms are vague. People don’t know what to be looking for,” he said. “Most providers encounter it infrequently in their careers. We need to raise awareness of this cancer and its symptoms so we can identify and treat patients earlier.”

This year’s Mesothelioma Awareness Day is a time when those whose lives have been affected by this rare disease can share what they know about prevention and treatment. Mesothelioma research is ongoing, and newly diagnosed patients should know there is hope for the future.

Mesothelioma Patients Have Treatment Options

Without increased awareness of malignant mesothelioma and asbestos-related diseases, many patients may not be aware of the illness until they receive the diagnosis. Unlike lung cancer, it’s challenging to know what to expect from a disease that isn’t familiar to most people.

“I let patients know that we have a lot of treatment opportunities for them according to their staging and that this is not the end,” said Dr. Christian Rolfo, director of Thoracic Medical Oncology at the University of Maryland Greenebaum Comprehensive Cancer Center.

Many physicians now assign mesothelioma patients a multimodal treatment plan that involves specialists across many disciplines.

“Newly diagnosed patients should seek a specialized doctor first,” said Simone. “Do enough reading to be comfortable with the provider and their multidisciplinary care program.

“Seek medical care and don’t delay,” he added. “There’s a lot of misinformation available.”

Nonprofits like the Asbestos Disease Awareness Organization and the Mesothelioma Applied Research Foundation strive to create a better understanding of asbestos-related diseases.

“Linda Reinstein, who runs the Asbestos Disease Awareness Organization, lost her husband and has dedicated her life to spreading the word about mesothelioma,” said Dr. Raja Flores, chairman of the Department of Thoracic Surgery for Mount Sinai Medical Center.

In some cases, cancer patients prefer not to draw attention to their illness, which can hinder the message coming from what is already a small community.

“Many of the patients, I found, don’t really want to say much,” said Flores. “They just want to get treated and get on with their lives.”

Without the help of patients advocating for research into their rare and debilitating disease, those looking for more information on mesothelioma may not find the answers they need.

“Patients should be careful about what they read on the internet,” Flores cautioned. “There’s a lot of misinformation.”

Many aspects of this disease are not yet common knowledge, such as the compound risk of asbestos and smoking that increases the chances of developing mesothelioma.

Mesothelioma awareness prevents the spread of misleading information and helps patients know what to expect during their treatment journey.

Loved Ones Are Best Mesothelioma Awareness Advocates

Simone believes that patients’ loved ones can best amplify the voice of the mesothelioma community.

“I’ve had several patients who have raised awareness and funds for research in honor of a deceased family member. They’re in the best position to advise and inform,” Simone said. “I’ve had family members of patients in blue-collar positions go in and educate that workforce on protecting themselves.”

Occupational asbestos exposure is the No. 1 cause of mesothelioma cancer.

Some experts believe that mesothelioma awareness should come from asbestos manufacturers and industries that present much of the danger.

“I do think it has to come from construction companies — people who actually see the devastating effects — other than just the doctors in the operating rooms and the clinics,” said Flores.

Ultimately, Flores suggests that friends and family need to be vocal to raise awareness for those outside of medicine.

“They’ve got to talk about it and be active on social media,” he said. “It has to come from people other than those in the medical field.”

Flores said if those affected by a mesothelioma diagnosis continue to speak up about the disease, people will understand the hidden dangers of asbestos exposure.

“Firemen are constantly exposed to it without even realizing it, and they’d run into those buildings even if they did know what was in there,” he said. “No asbestos is safe.”

Mesothelioma Awareness Leads to More Funding

One of the main goals of Mesothelioma Awareness Day is to raise funds for clinical research that focuses on new cancer treatments and early detection. These funds are essential to finding new ways to prevent and cure mesothelioma.

Researchers have made significant progress on new modalities such as immunotherapy and Tumor Treating Fields. However, it’s imperative to build on that success to research targeted therapies and biomarkers that allow physicians to identify the disease earlier.

“In the genetic testing area, we have a lot to do because there are few publications on that,” explained Rolfo. “In my group, we are working on understanding some of the molecular profiling in early-stage patients to predict their outcome.

“We also started a neoadjuvant immunotherapy trial to explore the pathological impact and overall survival of these patients,” he added. “Mesothelioma has a long record of negative trials because, in that period, there was not a lot of investment or knowledge of the biological background.”

Dr. Estelamari Rodriguez, a thoracic medical oncologist at Sylvester Comprehensive Care Center in Miami, said immunotherapy is the key to better outcomes for mesothelioma.

“Genomic alterations that have been designed haven’t really been exploited,” she explained. “There’s a lot of immunomodulation we don’t understand very well, but checkpoint inhibitors have really opened the door to advance this research for mesothelioma patients.”

Developments in research for mesothelioma could lead to safer and more effective treatments, as well as earlier methods of identifying asbestos exposure.

Simone said there is “tremendous potential” ahead for mesothelioma research.

“An increase in funding means advances in radiation modalities, early reporting in toxicity assessments and a huge advancement across all disciplines,” he said. “Without funding and awareness, this rare disease wouldn’t have as much research.”

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Sean Marchese, MS, RN, author for The Mesothelioma Center

Oncology Medical Writer and Registered Nurse

Sean Marchese is a registered nurse and medical writer at The Mesothelioma Center. He has a background in respiratory and thoracic oncology clinical trials. Sean has assisted physicians with the development of chemotherapy and surgical planning for patients with head, neck and thoracic cancers. As a registered nurse, Sean has worked with cancer patients undergoing pain management therapies and patients with brain and nervous system cancers in an inpatient setting.

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