Newly Diagnosed With Mesothelioma: Your First Steps
The most important step after a mesothelioma diagnosis is getting a second opinion from a specialist. Mesothelioma is rare, and most general oncologists have limited experience treating it. A specialist can evaluate your case and walk you through treatment options specific to your diagnosis.
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Mr. Wasserberg is proud to call himself a Trial Lawyer. He is often a featured speaker at industry summits and gatherings of the nation’s leading attorneys, from both sides of the bar. He is recognized by both his peers and his adversaries and is considered one of the nation’s premier mesothelioma and negligence attorneys
Content written by Dan Wasserberg
- Expertise
Mr. Wasserberg is proud to call himself a Trial Lawyer. He is often a featured speaker at industry summits and gatherings of the nation’s leading attorneys, from both sides of the bar. He is recognized by both his peers and his adversaries and is considered one of the nation’s premier mesothelioma and negligence attorneys
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Your First Steps After a Mesothelioma Diagnosis
The steps you take immediately after a mesothelioma diagnosis can affect your care and your options going forward. Mesothelioma is a complex cancer that requires specialized care, and building the right foundation early, from your support network to your medical team, makes a meaningful difference.
Your First Steps Checklist
- Connect with resources: Resources such as mesothelioma patient advocates and advocacy organizations can help you find a specialist for a second opinion, navigate appointments, explain medical terms and find support resources.
- Get a second opinion: This is a standard and encouraged step. A second opinion can confirm your diagnosis or offer a specialized perspective on a recommended treatment plan. This may open doors to new therapies.
- Assemble your medical team: Find doctors who specialize in mesothelioma. A specialist will have more experience with the disease and access to more advanced treatment options.
- Explore financial and legal assistance: Asbestos exposure is the main cause of mesothelioma. You may be eligible for compensation to help cover medical costs.
- Seek emotional support: Connecting with others who understand your diagnosis, through counseling and patient communities, can make a profound difference.
Acting early gives you more options. The sooner you have a specialist, a confirmed diagnosis, and a support system in place, the better positioned you are to make informed decisions for your health and well-being.
Understanding Your Mesothelioma Diagnosis
A pathologist analyzes your samples collected from a biopsy under a microscope and then produces a detailed pathology report that confirms a mesothelioma diagnosis. Because mesothelioma is very rare, it’s important for a pathologist with mesothelioma experience to perform the analysis. Misdiagnosis is a known risk with this cancer.
The pathology report contains key details that define your case. Three of the most important factors are cell type, tumor location and stage. Each tells your medical team something different about your health and determines the best treatment options for you.
- Cell Type: There are three main types of mesothelioma cells.
- Epithelioid: This is the most common type. It often responds better to treatment.
- Sarcomatoid: This type is less common. Your doctor will consider this when planning your care.
- Biphasic: This is a mix of both epithelioid and sarcomatoid cells.
- Tumor Location: Where the cancer starts matters for treatment.
- Pleural: In the lining of the lungs. This is the most common form.
- Peritoneal: In the lining of the abdomen.
- Pericardial: In the lining of the heart. This type accounts for approximately 1% of mesothelioma cases.
- Testicular: In the lining of the testicles. This is the least common mesothelioma type with only a few hundred cases ever documented.
- Stage: The stage tells how far the cancer has spread. It helps doctors decide which treatments might work best.
Cell type, tumor location and stage each tell a different part of the story. Cell type reflects how the cancer behaves and how it may respond to treatment. Location identifies where tumors first developed, which affects which treatments will be most effective for you. Stage describes how far the cancer has spread. Together, these three factors give your medical team what they need to begin building a customized treatment plan for you.
Assembling Your Mesothelioma Care Team
Building a mesothelioma care team starts with finding a cancer center that has specialists in the disease. From there, your lead doctor will help coordinate the rest of the team. Mesothelioma is complex enough that no single doctor manages it alone. A well-assembled team brings together different areas of expertise, each focused on a different aspect of your health and treatment.
Key Members of Your Care Team
- Mesothelioma oncologist: This is a cancer doctor who specializes in mesothelioma. They lead your treatment plan.
- Pathologist: This doctor examines your tissue samples to confirm the exact cell type of the cancer. This is key for an accurate diagnosis.
- Patient advocate or navigator: They help you navigate the healthcare system, answer your questions and connect you with resources.
- Social Worker: They can help with emotional and practical challenges, from finding transportation to connecting with support groups.
As treatment progresses, your team may grow to include surgeons, nutritionists, licensed therapists and palliative care specialists. Mesothelioma treatment is almost always multimodal, meaning it draws on multiple treatment approaches at once. Your lead doctor will help you understand who needs to be involved at each stage and coordinate care across the full team.
Getting a Second Opinion
A second opinion is a critical step. Because mesothelioma is rare, it can sometimes be misdiagnosed. A specialist at a cancer center can confirm your diagnosis and may know about newer treatments not available everywhere.
Seeking a second opinion is common and is a proactive choice for your care. It’s not an insult to your original doctor. It’s about making sure you have all the information to make the best choice for your health. A patient advocate or navigator can help you get a second opinion quickly.
Mesothelioma Treatment Options to Discuss With Your Doctor
Your treatment plan will be unique to you. Doctors usually use a combination of these treatments called multimodal therapy. Chemotherapy, immunotherapy, radiation and surgery are firstline treatments for mesothelioma and the most commonly prescribed.
- Chemotherapy: Uses IV or pill drugs to kill cancer cells throughout the body.
- Immunotherapy: Helps your own immune system find and fight the cancer.
- Radiation Therapy: Uses focused energy (X-rays) to kill cancer cells in a specific area.
- Surgery: An operation to remove the tumor. This is often an option if the cancer is found early.
Open discussions with your doctor about the pros and cons of each of these options for you will help ensure you’re comfortable with your treatment plan. It’s important to ask how your individual response to treatment, including side effects and effectiveness, could require adjustments to your plan.
Also, ask about palliative care. This type of care focuses on managing symptoms and improving quality of life. It can be used at any stage of treatment.
Legal and Financial Considerations After a Mesothelioma Diagnosis
Workplace exposure to asbestos, often at jobsites like mines, shipyards, construction sites or industrial plants, is responsible for most mesothelioma diagnoses. Because of this, you may have legal options for compensation. Settlements and verdicts from lawsuits and payouts from asbestos trust funds can help pay for medical bills, lost income and other diagnosis-related costs.
Legal and Financial Options
- Asbestos trust fund claims: Many companies that used asbestos sought bankruptcy protection and set up trust funds during that process to compensate people for harm from their products.
- Mesothelioma lawsuits: A lawsuit is a legal case against the companies responsible for your asbestos exposure.
- VA Benefits: If you’re a veteran, the Department of Veterans Affairs offers benefits for mesothelioma linked to military service.
- Workers’ compensation: This is a state-based program that provides benefits if you were exposed to asbestos at your job.
Finances can be a major source of stress. Exploring your options early can give you and your family peace of mind. Many mesothelioma attorneys work on a contingency basis (no upfront costs to you) until the case is settled.
Support After a Mesothelioma Diagnosis
Support is available from the moment of diagnosis through your healthcare team, patient navigators, advocacy groups and social workers. A mesothelioma diagnosis affects more than physical health. It touches every part of life, from your emotional well-being to the people closest to you. Finding the right support, whether through mental health resources, patient communities or caregiver assistance, can provide strength, practical advice and hope.
Emotional Support and Mental Health Resources
It’s normal to feel a range of emotions with a cancer diagnosis. Taking care of your mental health is just as important as taking care of your physical health.
Emotional Support Resources:
- Counseling: A professional counselor can provide a safe space to talk through your feelings.
- Patient advocacy organizations: Mesothelioma advocacy organizations often offer support groups, one-on-one support and free educational materials.
- Support groups: Meeting with other people facing a mesothelioma diagnosis lets you share experiences and advice. These can be in person or online.
Reaching out for help can make this difficult time more manageable. Studies show emotional support is linked to better treatment outcomes and a better quality of life.
Support for Mesothelioma Caregivers
If you are a family member or friend caring for someone with mesothelioma, your role is vital. Caregiving can also be exhausting. You need support too.
Resources for Caregivers
- Emotional Resources: Caregiver support groups and counseling can help you process your own feelings on the diagnosis and treatment.
- Practical Support: Help with scheduling appointments, navigating insurance and finding transportation to ease your daily load is available.
- Respite Care: This is temporary care that gives you a break to rest and recharge. It is crucial for preventing caregiver burnout.
Caregiver burnout is real and can affect your health as well as the quality of care you’re able to provide. Taking care of yourself isn’t separate from taking care of your loved one. It’s essential to it. Taking care of yourself allows you to better care for your loved one.
Newly Diagnosed With Mesothelioma FAQs
The timeline will vary for each person. It’s important to move forward without feeling rushed. The first few weeks are best spent getting a second opinion from a specialist and building your care team. A specialist will help you determine the best time to start treatment based on your specific diagnosis and overall health.
This is a personal decision. You may need to tell your employer to request medical leave under the Family and Medical Leave Act. If your diagnosis is related to asbestos exposure at work, telling your employer may also be a step in a workers' compensation claim. A lawyer can help you decide the best approach from a legal standpoint.
It helps to go to appointments with a list. You might ask: What is my specific cell type? What stage is my cancer? What treatment options do you recommend? Am I a candidate for surgery? Should I get a second opinion? What is the goal of the treatment you’re suggesting?
Many people continue to work, especially in the early stages or as their treatment schedule allows. Your ability to work depends on your type of work, the physical demands of the job and how you feel during treatment. You have legal rights, including the potential for medical leave, which can protect your job security.
Ask your current doctor for a referral. You can also contact a patient advocate or navigator who can connect you with specialists at cancer centers across the country. These specialists often work with your local doctors to coordinate your care.
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