Receiving a mesothelioma diagnosis can be an overwhelming and life-altering experience, often accompanied by a whirlwind of emotions such as shock, denial, fear, anxiety, sadness, anger, frustration, and feelings of isolation.
Once the initial shock has subsided, it’s crucial to take proactive steps forward, embracing the idea of “one day at a time.” There are various actions that patients can take to enhance their quality of life and overall well-being after their diagnosis. Discover more about these options.
Understand Your Diagnosis
Mesothelioma is a rare and aggressive form of cancer that arises in the mesothelium, which is the delicate tissue that envelops and protects many internal organs. It primarily affects the pleura (the lining of the lungs) but can also develop in the peritoneum (the abdominal cavity), pericardium (the heart), and, in rare instances, the tunica vaginalis (the lining around the testicles). Almost all cases are attributed to asbestos exposure.
Asbestos, a mineral that was extensively utilized in construction, shipbuilding, and heavy industry throughout the 20th century, can lead to severe health issues when its fibers are inhaled or ingested, remaining in the body for years and gradually causing damage that can culminate in cancer. Symptoms typically manifest 20 to 50 years post-exposure.
Due to its rarity and complexity, mesothelioma should ideally be diagnosed or at least confirmed by a specialist experienced in asbestos-related diseases. General oncologists may not frequently encounter this type of cancer, and an incorrect diagnosis or unclear staging could hinder access to appropriate treatment.
Patients are strongly encouraged to seek a second opinion. This is a common practice in the cases of rare or complex cancers and can offer reassurance, additional insights, or information about advanced treatment options. Understanding the specific type of mesothelioma involved, its stage of progression, and available treatment options will aid in making informed decisions regarding clinical care, support services, and, in many situations, legal and financial matters.
Get A Specialist Treatment Plan
The course of treatment will depend on the cancer’s progression, location, cell type, and the patient’s overall health. Chemotherapy is typically the first-line treatment, often involving drugs like pemetrexed and cisplatin.
In some cases, immunotherapy may be an option, particularly for patients who are not candidates for chemotherapy or have already undergone initial treatments. Surgery could also be considered, although its feasibility is contingent upon the extent of disease spread and the patient’s overall health.
Radiotherapy may be offered to some patients, especially as a palliative option to alleviate pain or enhance breathing.
Each treatment plan will have different goals. For some patients, it may focus on prolonging life or alleviating symptoms, while for others, especially those in earlier stages, the objective may be to remove or shrink tumors. It’s essential to have detailed discussions with your healthcare consultant, allowing ample time for questions and considerations. If you are not referred to a specialized treatment center, don’t hesitate to request one.
Explore Support Services
No one should navigate this journey alone, and support is readily available. In the UK, for instance, organizations like Mesothelioma UK provide access to clinical nurse specialists, practical advice, and resources tailored for patients and their families. Additionally, Macmillan Cancer Support offers valuable information, financial assistance, and emotional support.
Your oncology team within the NHS may include or refer you to various professionals, including clinical nurse specialists (CNS), palliative care consultants, social workers, or mental health experts.
Alongside medical care, support groups, both online and in-person, can be incredibly helpful. They provide an opportunity to connect with others facing similar challenges, share experiences, and discuss questions that might feel cumbersome in clinical environments.
This stage involves stabilizing the practical aspects of life post-diagnosis. From managing breathlessness to obtaining guidance on financial assistance or transportation to appointments, systems are in place to help, but you may need to assertively request these services. Don’t hesitate to ask for assistance.
Understand Your Legal Rights
Asmesothelioma is directly linked to exposure to a hazardous substance, many patients are eligible for compensation. This may be sought through governmental programs, civil claims against previous employers or insurers, or, in certain circumstances, asbestos trust funds.
In the UK, multiple pathways to compensation exist, including the Diffuse Mesothelioma Payment Scheme, which offers financial support to those exposed to asbestos at work but unable to trace their employer or insurer. Another option is the Industrial Injuries Disablement Benefit (IIDB), a weekly payment for individuals who develop the disease due to occupational exposure.
A lump-sum payment is also available under the Pneumoconiosis etc. (Workers’ Compensation) Act 1979, which can be claimed by the patient or their dependants if the patient has passed away.
Patients may pursue civil claims for compensation, particularly if the company responsible for the exposure can still be identified or insured. Even if the business has closed, its liability could be covered by an insurer. Note that these claims are time-sensitive; in England and Wales, there is generally a three-year limit from the date of diagnosis, making it crucial to consult a solicitor promptly.
Many law firms specializing in mesothelioma offer free initial consultations and often operate on a no-win, no-fee basis. They can clarify necessary documentation, assess the strength of your case, and estimate potential compensation.
Compensation for relatives of patients helps cover lost income, care costs, travel to appointments, and other practical challenges arising from the diagnosis. Furthermore, pursuing legal action can provide closure, formally acknowledging that this illness could and should have been prevented.
Prioritise What Matters Most
After a mesothelioma diagnosis, it’s common for life to become consumed with paperwork, appointments, and urgent decisions. It can feel like everything must be resolved immediately. However, after establishing the essentials—medical care, support, and legal advice—it’s equally crucial to pause and reflect on: what matters now?
For some, this may involve spending quality time with family; for others, it might mean organizing affairs, managing finances, drafting a will, or planning for the future. There are no right or wrong priorities; they are deeply personal. The important thing is to ensure you have the space to concentrate on what matters to you.
Mesothelioma is undeniably a serious illness, but even in the face of uncertainty, patients can take charge of their journey, access available care and compensation, and focus less on finding answers and more on what truly matters to them.
