What to Do After a Mesothelioma Diagnosis
Hearing you have mesothelioma can bring a flood of emotions. It can be confusing to navigate this new normal, and it’s natural to feel overwhelmed.
Mesothelioma Hope is here to help you make sense of what’s happening and figure out what to do next.
Some of the most important aspects to focus on include:
- Building your medical team and treatment plan
- Understanding your finances and how to pay for care
- Finding support systems and helpful resources
If you’ve just been diagnosed and don’t know where to start, request our Free Mesothelioma Guide for comprehensive information on everything related to your illness.
Mapping Out Your Mesothelioma Journey
Our on-staff nurses and Patient Advocates have developed a detailed timeline to help guide you through every step of your mesothelioma journey. We’re standing by to help you overcome any barriers to care and prepare for the challenges ahead.
1. Partner With a Patient Advocate
A Patient Advocate can help you coordinate the logistics of your diagnosis and treatment. Think of them as an extra layer of support, someone who focuses on your rights first and foremost.
Starting here is key. Your Patient Advocate will guide you through every following step, helping you make informed decisions and ensuring your voice is heard and respected.
They can help you find a mesothelioma specialist, evaluate your financial options, and connect you to local and national support resources.
“The ability to improve someone’s well-being is deeply fulfilling. I possess a strong sense of empathy that fuels my desire to help others, especially when they’re at their most vulnerable. I love advocating for my patients to ensure they receive the best care possible.”
Liz and our other Patient Advocates are standing by to support you. Give us a call at (866) 608-8933 or contact us to get connected now.
2. Learn More About Your Diagnosis
Your mesothelioma diagnosis should give you more insights into what you’re dealing with.
Many of the terms and language used can be confusing, so it’s important to find straightforward, educational resources to help you make informed decisions about your care.
Components of your diagnosis may include:
- Where the cancer is located
- The cancer’s stage (how far it has spread)
- The mesothelioma cell type
Have your doctor or other trusted medical professionals explain your pathology report (the results of your biopsy) and how it relates to your prognosis and treatment options.
For extra guidance during medical appointments, download our Free Checklist of 14 Questions to Ask Your Doctor to help ensure you’re getting the answers you need.
3. Investigate Treatment Options
Once you understand your diagnosis, consider getting a second opinion based on your tumor pathology.
Because mesothelioma is so rare, many general doctors lack the experience to treat it effectively. A second opinion from a specialist can give you peace of mind or even expand your treatment options.
“I think getting a second opinion saved my life. It’s really important for cancer patients to do their research, understand their options, and make the choices that are best for them.”
Discuss all available treatment options with your doctor, including newer approaches like immunotherapy. You may also want to explore clinical trials at some point down the road if your cancer doesn’t respond to traditional treatments.
Use our Free Doctor Match service to get recommendations for mesothelioma specialists in your area.
4. Build a Support Network
It is important to identify and connect with support groups, peer mentors, and community resources to help you cope with your diagnosis. Your emotional well-being should be part of your overall treatment plan.
A support network can include:
- Immediate and extended family
- Close friends
- Neighbors
- Members of faith-based communities
- People who are also navigating a mesothelioma diagnosis
Supporters can help you manage daily aspects of your life, like helping with meals, driving you to or from appointments, or taking care of pets while you get treatment. They can also help you deal with the emotions and stress cancer brings.
One study found that cancer patients experiencing loneliness also faced higher levels of fatigue and pain and worse sleep quality. Don’t be afraid to open up to the people you love and ask for help.
“Mesothelioma is not a disease to travel alone. Accept outside help. Look for support groups. You’re going to need every tool in your arsenal ready to battle against this disease.”
5. Take Advantage of Legal Help
Mesothelioma treatment can be expensive, even with insurance. Estimates put it at over $400,000 a year.
Money shouldn’t stand in the way of you getting treatment. Understand your legal options up front so you can focus on your health and recovery.
Filing a mesothelioma lawsuit with help from an asbestos law firm can maximize your compensation and help secure your family’s future. Asbestos is the only known cause of mesothelioma, and manufacturers knew asbestos-containing products were harmful but prioritized profits over people’s lives.
“If you’re a victim of asbestos exposure, my advice is to pursue litigation because the big companies knew this was a problem a long way back. The damage it causes is irreversible, and you only have one life. You want to do the best you can for your family.”
Get a Free Case Review to learn more about filing a claim for compensation. You shouldn’t be alone in covering cancer costs.
6. Prepare for Transitions in Care
Start thinking about what matters to you most to prepare you for future transitions. Although mesothelioma is not a guaranteed death sentence, it can feel empowering to take control of what will happen next.
Schedule advance care planning discussions with your health care team. This helps you to understand your wishes for care through the end of life. Your support network will implement accordingly.
Stories of Hope
The days and weeks following a mesothelioma diagnosis can be overwhelming. You and your family’s lives will change, but there is so much reason for hope.
Below, read stories of mesothelioma survivors who’ve walked in your shoes and take inspiration for the journey ahead.
Jessica Blackford-Cleeton
- Diagnosis: Peritoneal mesothelioma
- Year of Diagnosis: 2015
- Treatment: Surgery and chemotherapy
Jessica struggled to get an accurate diagnosis despite suffering from mesothelioma symptoms for over a year.
She had to become her own advocate throughout the diagnosis and treatment process. Newly married, she also didn’t want her cancer treatment to keep her from growing her family.
Today, Jessica and her husband are proud parents to two children.
Jimmy Johnson
- Diagnosis: Pleural mesothelioma
- Year of Diagnosis: 2021
- Treatment: Chemotherapy and immunotherapy
Jimmy lived his life on the road, traveling with rock legends as a talented live music stage producer — until mesothelioma cancer forced him into retirement.
He fought for an accurate diagnosis and effective treatment plan, finding hope in immunotherapy as his tumors began to shrink.
Jimmy and his wife Kelley are adapting to their new normal, focusing on humor: “We’re going to have good days and bad days, and you want to have more of the smiles,” Kelley shared.
Find more stories of mesothelioma patients and their caregivers in our Free Survivors Guide, full of actionable tips and hopeful insights.
Get Support for Your Mesothelioma Journey
Our team is here to help support you or a loved one after a mesothelioma diagnosis. Reach out to our Patient Advocates to take back control of your life.
Our Patient Advocates are here to help you:
- Access easy-to-digest information about this cancer
- Find a specialist to understand your diagnosis
- Get a second opinion on your treatment plan
- Connect with others and build a support network
Give us a call at (866) 608-8933 or contact us any time for free support.
Mesothelioma Patient Timeline FAQs
What to do after a mesothelioma diagnosis?
Don’t panic. A mesothelioma diagnosis can feel scary, but you have options. The first thing to do is get a second opinion to verify the diagnosis or provide additional treatment options.
“So many people go on Google, and there’s a lot of not just misinformation, but information that doesn’t apply to that particular individual,” mesothelioma specialist Dr. Raja Flores says. “And the problem is they tend to look at the worst. I tell them this is not a guaranteed death sentence.”
You can also speak to our trusted legal partners for compensation options to pay for treatment and other daily expenses.
How is a person's daily life affected by mesothelioma?
Depending on the type of mesothelioma, your daily life may be affected by disruptive symptoms like shortness of breath, chest pain, coughing, abdominal pain, or fatigue.
Additionally, many patients need to take time off from work to undergo treatments like surgery, chemotherapy, or immunotherapy.
There are many pain management options to address daily discomfort from mesothelioma, and financial compensation is available to help with lost income.
What is the timeline of mesothelioma?
Asbestos is the only known cause of mesothelioma, and there is typically a long latency period (10-50 years) between asbestos exposure and the first symptoms of mesothelioma.
After a mesothelioma diagnosis, the cancer may progress quickly — but treatment can help. Many survivors are still alive 15+ years later.
How We Can Help
