Traveling for Mesothelioma Treatment: What You Need to Know

A mesothelioma diagnosis often feels overwhelming—not just because of the emotional, psychological, and physical ramifications, but also because of the logistical ones. The shock of learning that you or a loved one has mesothelioma is often immediately followed by a series of very difficult, very serious decisions about what to do next.

One of the biggest decisions many patients face is whether to pursue aggressive therapeutic treatment for mesothelioma—and if so, whether to travel in order to access that treatment. Mesothelioma is a relatively rare cancer, and most doctors—even most oncologists—do not have the training, experience, resources, and research connections to offer comprehensive treatment. For many mesothelioma patients, the best care is often located far from home, at specialized cancer centers or with experts working at prestigious hospitals or medical systems.

Traveling for treatment can offer mesothelioma patients and their families access to cutting-edge therapies, experimental clinical trials, and expert teams — but it also comes with unique logistical and emotional challenges. In this article, we’ll explore what patients and their families need to know to make the best decision and prepare for the road ahead.

Why Do Some Patients Travel for Mesothelioma Treatment?

As mentioned, mesothelioma is a rare cancer, to the extent that most oncologists may only see a handful of cases — or none at all — in their careers. This is why seeing an experienced mesothelioma specialist can make such a big difference. Mesothelioma experts have the experience and resources to tailor care to the specific needs of mesothelioma patients, utilizing the most recent research and technology.

Often, mesothelioma specialists work at or in coordination with specific cancer centers or hospitals with mesothelioma programs. These cancer centers and hospital programs, which are often located in or around major US cities, can offer:

• Multidisciplinary teams with surgeons, oncologists, pulmonologists, radiologists, and palliative care experts, in addition to physical and respiratory therapists, nutritionists, and other clinicians well-versed in mesothelioma treatment and care.
• Access to clinical trials, offering promising, cutting-edge treatments that are otherwise not widely available. Participation in clinical trials for experimental new treatments may drastically improve quality of life and prognosis while giving patients and their families the chance to contribute to broader mesothelioma research.
• Advanced diagnostic tools that can help accurately stage the disease and guide treatment, including the consideration of essential information like cell type.
• Tailored surgical approaches, like extrapleural pneumonectomy, pleurectomy/decortication, or HIPEC/cytoreductive surgery, often performed by experienced mesothelioma surgeons (and in some cases, by surgeons who themselves invented or improved the procedure).

These resources can be essential in delivering quality mesothelioma treatment to patients, and accessing them may require traveling for care. While this will ultimately not be the right choice for every patient, especially patients who opt primarily for palliative care instead of curative therapy, it can lead to better outcomes and peace of mind for many.

How to Decide If Traveling Is Right for You

The decision to travel for mesothelioma treatment depends on many factors, including your health, the health and wellbeing of your support system, your financial situation, and personal preferences, among other factors. When thinking through whether travelling for mesothelioma treatment is the right choice for you, it’s important to consider:

• Medical stability and physical ability to travel. In some cases, mesothelioma patients are not well enough to withstand a significant amount of travel. Ask your mesothelioma care team whether you are medically stable enough for travel.
• Caregivers and family members. When mesothelioma patients travel for treatment, they often require the presence and assistance of their primary caregivers, who are often members of their household or immediate family. Consider whether your caretakers or family members will be able to travel with you, and if not, whether you can travel for mesothelioma treatment without them.
• Financial ability. Traveling for mesothelioma treatment, as well as receiving treatment at a hospital program or cancer treatment center, can be very expensive. While insurance may cover some of your treatment and even some of your travel-related expenses, and while many cancer centers have payment plans and financial assistance options available, mesothelioma patients and their families should consider the potential out-of-pocket costs of traveling for treatment.
• Comfort with being away from home. Mesothelioma patients—like people generally—vary widely in their comfort with being far away from home for extended periods of time. For some patients and their families, this is less of an issue; for others, discomfort with being away from home for weeks or months is a more considerable factor.

Mesothelioma patients and their families should speak openly and honestly about their options, desires, and concerns when it comes to traveling for treatment. Your local mesothelioma care team, as well as the team at the cancer center or hospital program, may also be able to help coordinate and ensure continuity of care between your home and a given cancer center or hospital. If travel isn’t feasible, some experts may also offer virtual consultations to guide your local team.

Planning the Logistics of Medical Travel

If you’ve decided to travel for mesothelioma treatment and have chosen a treatment center or hospital program, you’ll need to plan for the practical aspects of travel. Your selected cancer center or hospital will likely have resources and assistance for mesothelioma patients and their families traveling for care. In addition, you can self-help by considering the following:

• Transportation: How will you get to your destination? Will you fly, drive, or take a train? If you’re flying, ask the cancer center if they offer support services for patients with mobility or oxygen needs. You can also ask your mesothelioma care team about what you will need in order to travel safely as a mesothelioma patient.
• Lodging: Many cancer treatment centers and hospitals have lodging resources for patients traveling for care as well as their families. Some have agreements with local hotels for discounted rates, or connections with nonprofit organizations that help patients find affordable or free housing nearby, such as the American Cancer Society’s Patient Lodging Programs.
• Medical records and insurance: Make sure you have all your documents, including medical history, test results, imaging, and pathology reports, sent to your intended cancer treatment center in advance, as well as all necessary insurance paperwork and referrals. Call your insurance provider to confirm what is covered at a given treatment center and whether prior authorization will be required. Carry copies with you as a backup.
• Caregiver support: If someone is traveling with you, they may need to take time off work, arrange for FMLA, and/or arrange for childcare, pet care, or other logistical arrangements.

What to Pack for a Treatment Trip

Packing for a medical trip is different from packing for vacation. While your cancer treatment center should give you a list of things you should bring with you when traveling for mesothelioma care, remember to include:

• Medical essentials: Insurance cards, IDs, medications, copies of medical records, and a list of questions for your care team
• Comfort items: A cozy blanket, headphones, a neck pillow, snacks, books, or anything that helps you relax
• Clothing: Comfortable, loose-fitting, weather-appropriate clothing and shoes that are easy to change in and out of for exams and treatments.

Traveling for mesothelioma treatment isn’t always easy, but it can be a critical step toward better care and more hopeful outcomes for patients and their families.

Satterley & Kelley, PLLC can help with your mesothelioma lawsuit. Call our office in Louisville at 502-589-5600 or toll-free at 855-385-9532. You may also complete our contact form for a free initial consultation.