Being diagnosed with mesothelioma often brings on a whirlwind of intense emotions such as shock, fear, anxiety, sadness, anger and feelings of loneliness. It’s a challenging period, but it’s vital to forge ahead once the initial shock subsides. Adopt a “take it one day at a time” mindset. Patients can take certain actions to enhance their life quality and well-being post-diagnosis.
Grasp the Details of Your Diagnosis
Mesothelioma is an uncommon, formidable cancer that originates in the mesothelium, a thin layer of tissue that blankets many of the body’s organs. It primarily affects the lining of the lungs (pleura), but it can also occur in the abdomen (peritoneum), heart (pericardium), and, infrequently, the lining around the testicles (tunica vaginalis). It is almost universally caused by exposure to asbestos.
Asbestos is a mineral that saw extensive use in construction, shipbuilding, and several industries during the 20th century. Inhalation or ingestion of its fibers can lead to their prolonged presence in the body and eventual damage that may progress to cancer. Symptoms commonly appear 20 to 50 years after initial exposure.
It’s critical that mesothelioma is diagnosed or, minimally, confirmed by a specialist experienced with asbestos-related diseases. General oncologists might not see this cancer type often, and a misdiagnosis or inaccurate staging can inhibit or delay access to treatment.
Patients are encouraged to get a second opinion. This is standard practice for rare or complex cancers, offering extra reassurance, insights, or access to advanced treatments. Having a clear grasp of your specific mesothelioma type, its progression, and treatment options will help inform subsequent decisions, including clinical care, support services, and often, legal and financial considerations.
Pursue a Specialist-Formulated Treatment Plan
Your overall health, the cancer’s stage, location and cell type will dictate the treatment courses. The most common first line of treatment is chemotherapy, usually involving drugs such as pemetrexed and cisplatin.
In some cases, immunotherapy may be considered, especially for patients unfit for chemotherapy or those who have already undergone initial treatment. Surgery might be an option depending on how much the disease has spread and your overall health condition.
Radiotherapy may also be an option to manage pain or improve breathing.
The treatment goal varies from person to person, ranging from extending life expectancy, reducing symptoms or in early-stage cases, using aggressive treatment to remove or shrink tumours. Always consult with your healthcare providers regarding the methods and avail yourself of the opportunity to ask questions and review your options. If you didn’t receive a referral to a speciality center, remember to ask for one.
Tap Into Available Support Services
Nobody should navigate this process alone. In the UK, platforms such as Mesothelioma UK and Macmillan Cancer Support offer a wealth of resources including clinical nurse specialists, practical advice and tailored resources for patients and their families.
Your oncology team will likely include or have access to clinical nurse specialists, palliative care consultants, social workers and mental health professionals.
Beyond medical care, support groups online or offline can provide a respite to interact with individuals dealing with a similar diagnosis, share experiences and ask questions.
Now is the time to get a grasp on the practical aspects such as managing breathlessness, gaining insights on financial benefits or travelling to hospital appointments. Don’t hesitate to make inquiries.
Comprehend Your Legal Entitlements
Often, mesothelioma patients are eligible for compensation due to exposure to asbestos, a known hazardous substance. This could come from government schemes, civil claims against previous employers or insurers, or in some cases, asbestos trust funds.
In the UK, several compensation routes exist, one of these being the Diffuse Mesothelioma Payment Scheme, which provides financial aid to those exposed to asbestos at work but can’t trace their former employer or insurer. Another avenue is the Industrial Injuries Disablement Benefit (IIDB), a weekly payment for people whose disease can be traced back to their occupation.
Patients can also initiate civil compensation claims, particularly if the company responsible for their exposure can still be traced or insured. These claims have a legal time limit and generally three years from the date of diagnosis in England and Wales, so early consultation with a solicitor is critical.
Numerous mesothelioma-specialised law firms offer free initial consultations and most operate on a no-win, no-fee basis. They can help you understand the required documentation, the strength of your case, and the compensation you might be eligible for.
This compensation aids in covering income loss, care costs, and travel expenses for appointments, among other practical challenges that arise after diagnosis. In some cases, legal action also provides a sense of closure, a formal acknowledgement that this disease could have been prevented.
Focus on What Is Most Important to You
Post-diagnosis, life often seems bogged down with paperwork, appointments, and urgent decisions. Once the fundamentals are in place – medical care, support, legal guidance – it’s crucial to pause and ask: what is important to me now?
This might mean spending time with family, ensuring affairs are in order, sorting out finances, writing a will, or planning ahead. There is no universal answer, individual circumstances dictate the priorities. What’s important is that you create the time and headspace to concentrate on these.
Being diagnosed with Mesothelioma is indeed a grave situation. But, even amidst all the uncertainty, you can still take charge, access the care and compensation you’re entitled to, and spend less time seeking answers and more time on things that matter most to you.
