The time of diagnosis is vital to combating the cancer known as mesothelioma. How important, though?

Well, the stage of cancer at the time of diagnosis has a significant impact on treatment options — and therefore, on survival. If a patient is diagnosed in stage 2 or 3, they might have mesothelioma surgery. If it’s stage 4, the only option is palliative chemotherapy.

For patients who see their local oncologist first for a diagnosis, getting a referral to a specialist quickly is essential. Most oncologists aren’t aware of what mesothelioma looks like on scans, or pathology reports.

They don’t know the specific biomarkers distinguishing it from other cancers, like ovarian cancer or lung cancer. They also can’t perform surgery, and don’t work at a hospital with a surgeon capable of safely removing the narrow lining of the lung or abdominal cavity.

This is why they need to refer the patient to a specialist — and quickly.

 

Fewer Delays in Cases Coming to Specialists

Many surgeons and specialists mention how many cases they see are in later stages, delayed from getting to them by oncologists who prescribe systemic therapy not knowing there are other options.

Fortunately, this practice is changing.

“Many years ago, they wouldn’t go through the process of getting a diagnosis. They just get palliative relief,” said Dr. Wickii Vigneswaran, Director of Thoracic Surgery at Loyola University Health System in Chicago. “We still have some of that philosophy existing in communities. I sometimes get stories from patients about their experiences with local physicians.”

More physicians are referring patients to specialized cancer centers, where surgeons have seen many cases of mesothelioma. Some surgeons are trained for abdominal malignancies, such as peritoneal mesothelioma. Others are thoracic surgical oncologists, focusing on pleural mesothelioma.

 

Importance of Patient Advocacy Websites for Mesothelioma

Another vehicle to get patients to cancer specialists is through patient support organizations, like Mesothelioma Guide.

“A lot of patients come through patient support organizations and patient support groups,” Dr. Vigneswaran said. “Patients and families can shop from their living rooms to see what is possible and available. So they can investigate who can treat this disease. Often it’s the families who are directing the care.”

These websites, such as ours, empower patients to ask for a specialist. Dr. Vigneswaran even noted how the “internet changed everything” in this regard. It’s a positive step, too, as patients have information and knowledge when meeting with their physician or local oncologist.

Dr. Mecker Moller, a peritoneal mesothelioma specialist at University of Miami Comprehensive Cancer Center, said this assistance undoes a culture of slow referrals and misinformation about mesothelioma.

“This is why what you are doing is so valuable,” she said. “You’re giving patients proper data and the people involved in treatment. There’s so much misinformation in the community.”

She said there must be better communication and collaboration between specialists and other oncologists. Patient resources are a gap needing to be filled at hospitals.

“They come to you with a hope,” Dr. Moller said. “… Some of them are too beyond surgery, even a clinical trial.”

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