A Guide for the Medical Community on How to Navigate Mesothelioma

May 2020 Vol 11, No 5


Lung Cancer
Jacques Fontaine, MD
Director, Mesothelioma Research and Treatment Center
Moffitt Cancer Center, Tampa, FL

As part of a mesothelioma advisory group, I and approximately 10 doctors from across the United States provide expert opinions on treatments and modalities for mesothelioma. With current pathological techniques, diagnosis is becoming more accurate and definitive. However, curative therapy for mesothelioma remains unobtainable. Regardless, patients who are candidates for aggressive surgical and multimodality treatments should have access to the best available options.

As physicians and researchers develop new methods and techniques in the fight against mesothelioma, there are unfortunately many patients who end up without the care they deserve. These patients are not always given the proper tools and resources they need to navigate their treatment plan.

Physicians must address the specific needs and concerns of these patients when dealing with mesothelioma. With this diagnosis, it is easy to become confused and overwhelmed, which leads to mismanagement and disorganized patient care.

Accessibility of Alternatives

Cancer treatments can often leave patients in agony for what amounts to a limited increase in survivability. Drug costs are spiraling out of control, with the newest immunotherapies costing patients more than $100,000 per year. Physicians must be honest and realistic when laying out expectations of a multidisciplinary approach.

After a confirmed diagnosis, and hopefully a second opinion, patients need information on the types of doctors they will see, what to expect during their appointments, and a timeline of projected treatments. Identifying these goals and challenges can relieve stress and prevent some of the chaos that stems from a mesothelioma diagnosis.

The rarity of mesothelioma presents a series of issues in providing information to patients on all treatments that may be available. In the United States, fewer than 3000 patients are diagnosed annually with mesothelioma.

Oncologists and treating physicians should know when they are not equipped to provide their patients with the most relevant resources. The most important thing they can do in that situation is help patients reach out to seek other treatments. Providing information in the appropriate format that best suits the patient can go a long way in making them feel encouraged and supported in their care. Resources can take the form of printouts or brochures, websites, medical portals, webinars or support groups, extended availability, and guides for obtaining a second opinion.

Information on clinical trials is especially important for mesothelioma patients. Immunotherapies have begun to shape the landscape of treatments available by increasing quality of life and improving prognoses for thousands of patients. Information on how to find and enroll in clinical trials is not always clear, and it is especially difficult to navigate after a new cancer diagnosis.

It is imperative to support these patients in understanding the benefits and risks of these trials and realizing what an experimental therapy might entail. Unfortunately, many patients believe they may be exposed to dangerous and untested medications when they sign up for a clinical trial. It can be extremely difficult to understand how treatments such as immunotherapy work and how they will provide benefit over conventional therapy such as chemotherapy and radiation.

There are a multitude of new studies and therapies being tested for mesothelioma. Combining these options with the unique treatments already available for mesothelioma can make for a confusing set of choices for the patient. Delivering the right resources and information to a patient in a suitable format will make for positive and appropriate decisions as they navigate their treatment journey.

Financial Stability

Insurance information is unfortunately often overlooked when assisting patients with their treatment plan. Patients may not be completely aware of their insurance benefits or even how to obtain a list of their coverage. Familiarity with their insurance plans means knowing the cost of a copay and the percentage of coverage for various procedures, tests, and medications.

Patients are likely to see many new providers they are not established with after a new mesothelioma diagnosis. They may not be prepared to manage several different providers with an unfamiliar insurance plan. Assisting families in exploring their insurance benefits and coverage allows them to be better prepared for any out-ofpocket expenses they may incur for their treatment.

Financial stability is one of the main concerns for a family dealing with a new cancer diagnosis. Physicians should provide the support needed to navigate a network of providers and develop a stable financial plan.

These plans become more complex, however, when seeking out more advanced treatments for mesothelioma. Patients who enroll in a clinical trial or are planning to undergo a new type of surgical or radiation therapy may have difficulty getting relevant answers about coverage from their insurance.

Sponsor coverage in clinical research varies wildly from study to study, and compensation or cost for the patient may not be apparent until after they have enrolled. Clarity and consistency in communication between a patient and their insurance provider should be facilitated by the physicians they are trusting with their care.

Unlimited Support

Mesothelioma patients must know that help is always available. The diagnosis can seem hopeless, and the available choices ostensibly limited. The median survival of patients with mesothelioma is 6 to 18 months after diagnosis.

However, support for mesothelioma patients can manifest in a myriad of ways. Patients can receive assistance with transportation, lodging, and finances, as well as emotional support. Because mesothelioma is a rare disease, there are several organizations, such as The Mesothelioma Center at Asbestos.com, willing to provide transportation to appointments or help with other medical needs.

These organizations may also have support groups available if one is not available at the patient’s treatment center. Support groups connect patients with others who can share stories of their struggles and successes. Patients can encourage one another to reach out for second opinions or new types of treatments. Support groups can also point patients in the direction of organizations willing to help financially or provide legal assistance.

Knowing that they are not alone in their illness can change the world for a patient. A strong support system is vital in the battle against mesothelioma. These patients need an avenue to shared decision-making.

The multidisciplinary approach can be tremendously confusing to patients with a new diagnosis. The strength of a robust support system that comprises their medical team, friends, and family makes the arduous journey of mesothelioma treatment considerably more manageable.


  • Cao S, Jin S, Cao J, et al. Malignant pericardial mesothelioma: a systematic review of current practice. Herz. 2018;43:61-68.
  • Hill K, Portman M, Tabi Z. Meet the researchers: an alternative method of engaging patients with research in mesothelioma. Res Involv Engagem. 2018;4:33.
  • Kindler HL, Ismaila N, Armato SG 3rd, et al. Treatment of malignant pleural mesothelioma: American Society of Clinical Oncology Clinical Practice Guideline. J Clin Oncol. 2018;36:1343-1373.
  • Selby K. Multimodal Therapy. Asbestos.com. www.asbestos.com/treatment/multimodal-therapy. Updated February 21, 2020. Accessed March 17, 2020.
  • Taylor BH, Warnock C, Tod A. Communication of a mesothelioma diagnosis: developing recommendations to improve the patient experience. BMJ Open Respir Res. 2019;6:e000413.

You can contact Dr Jacques Fontaine directly at www.floridachestsurgery.com.

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Last modified: August 10, 2023

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