Mesothelioma is a rare and aggressive form of cancer that affects the mesothelium, a protective lining that covers many of the body’s internal organs. It is most commonly caused by exposure to asbestos. Asbestos fibers can become lodged in the lining of the lungs, abdomen, or heart, causing genetic damage that leads to mesothelioma tumors decades later.
Receiving a mesothelioma diagnosis can be devastating. Patients are often shocked to learn they have this disease, as symptoms may not appear until the cancer is advanced. A mesothelioma diagnosis also carries a poor prognosis, with most patients surviving 12-21 months after diagnosis.
However, there are ways for patients to take control of the situation and handle a mesothelioma diagnosis.
1. Learn About Your Disease
Receiving a diagnosis of mesothelioma can feel overwhelming. One of the first and most important steps is to learn as much about the disease as possible. This knowledge empowers patients to make informed decisions about their care and treatment options.
There are many high-quality resources available to learn about mesothelioma. Reputable organizations like the American Cancer Society, the Mesothelioma Applied Research Foundation, and the National Cancer Institute all provide detailed and up-to-date information on mesothelioma. Additionally, websites dedicated to the disease, such as mesotheliomahope.com, offer extensive resources and support tailored specifically for mesothelioma patients and their families.
Patients should spend time researching the disease, including its causes, risk factors, symptoms, diagnostic procedures, staging, and treatment approaches. It is especially important for patients to understand the stage of their own cancer. Mesothelioma staging provides insight into how far the disease has progressed and what the prognosis may be. Generally, early-stage mesothelioma that is caught quickly has a more positive prognosis.
2. Find the Right Mesothelioma Specialists
With mesothelioma being a relatively rare cancer, it is crucial for patients to have a medical team that specializes in treating the disease. Mesothelioma requires doctors specifically trained in the latest diagnostic tests, staging techniques, and multimodal therapies.
Patients should research and look for mesothelioma specialists, ideally at major cancer centers or those with an NCI designation. These centers and specialists will be at the forefront of knowledge and research on mesothelioma. Many also run clinical trials and have access to emerging treatments.
Ideally, patients can find doctors who actively participate in mesothelioma research and clinical trials developing new therapies. Their expertise and knowledge of cutting-edge treatments can be invaluable.
3. Get an Accurate Pathology Report
Pathology reports play a critical role in confirming a mesothelioma diagnosis and providing key details about the disease, such as cell type, biomarkers, and stage. After receiving a diagnosis, patients should obtain a copy of their pathology report.
They should also consider getting a second opinion on their pathology from a mesothelioma specialist. An accurate, comprehensive report ensures patients are properly staged and receive the most appropriate treatment plan. Any discrepancies or errors could lead to improper treatment.
Reviewing the report with their medical team also allows patients to understand the specifics of their disease and make empowered decisions about the next steps.
4. Find Emotional Support
Receiving a mesothelioma diagnosis causes enormous emotional stress for both patients and their loved ones. Finding mental health support early is critical to help process this life-changing news.
Consider joining a local or online mesothelioma support group. Connecting with others going through similar experiences can provide needed comfort and advice. Patients should also rely on family and friends for emotional support and not try to cope alone.
A strong support system helps patients manage the psychological burden of a mesothelioma diagnosis. Therapists and counselors can also assist in dealing with the grief, fear, and trauma that often accompany a cancer diagnosis.
5. Explore Clinical Trials
Participating in a clinical trial enables mesothelioma patients to access promising new treatments and directly contribute to cancer research. These trials help researchers develop and test emerging therapies like immunotherapy, gene therapy, novel drugs, and combination approaches.
While not right for every patient, clinical trials give patients a chance to receive cutting-edge treatment options that are not yet widely available. There are risks, so patients should fully understand the trial before enrolling. For some, early access to an innovative therapy can make a difference.
Patients can search trial databases to find studies relevant to their cancer type and stage. They should ask their medical team if there are appropriate clinical trials available that may benefit them.
6. Find Financial Assistance
The costs of mesothelioma testing, treatment, and care can quickly add up and become a significant financial burden. It is important for patients to research and find financial assistance programs to help manage expenses.
Options include health insurance, Medicare coverage, legal compensation through asbestos trusts, and nonprofit grants. Organizations like the Mesothelioma Applied Research Foundation provide information on assistance programs. Hiring a financial counselor or social worker can also help navigate costs.
There are resources available to ease the financial challenges associated with a mesothelioma diagnosis. Patients should be proactive in seeking out every avenue for coverage and compensation so they can focus on their health, not bills.
7. Assemble Your Medical Records
Maintaining well-organized medical records makes managing mesothelioma care easier for patients. These records include diagnostic images, pathology reports, bloodwork and lab results, treatment summaries, and more.
Patients should request copies of all their files and test results from doctors, hospitals, and labs. These should be kept in a secure place and organized chronologically. Good records allow for efficient consultations, second opinions, and continuity of care between providers.
8. Connect with Other Patients
One of the most valuable resources for newly diagnosed mesothelioma patients is connecting with other survivors. Support groups allow patients to share stories, knowledge, and coping strategies.
In-person and online community support groups provide a forum to give and receive encouragement. Patients can learn about treatment options and what to expect. They can also blog or participate in forums to help others dealing with a diagnosis.
Conclusion
A mesothelioma diagnosis presents many challenges. However, patients have many resources to help them handle this difficult situation. Learning about the disease, finding experienced doctors, exploring all treatment options, getting emotional support, and connecting with fellow patients allows patients to take control. While mesothelioma remains an uphill battle, an empowered and informed approach leads to the best possible outcome.
