Newly Diagnosed with Mesothelioma

A mesothelioma diagnosis is overwhelming. This guide will help you understand what to do first and how to navigate the path ahead.

Take a breath. While mesothelioma is a serious diagnosis, treatment options have improved significantly in recent years. The steps you take now—finding specialized care, getting accurate staging, and exploring all treatment options—can make a meaningful difference in your outcome.

First Steps After Diagnosis

Confirm Your Diagnosis

Mesothelioma is rare and can be misdiagnosed. Request that a pathologist with mesothelioma experience review your biopsy. Consider getting a second opinion from a major cancer center.

Understand Your Specific Diagnosis

Ask your doctor about: the type (pleural, peritoneal, etc.), the stage (1-4), the cell type (epithelioid, sarcomatoid, biphasic), and what these mean for your treatment options.

Find Specialized Care

Seek treatment at a cancer center with mesothelioma experience. With only ~3,000 cases per year, most oncologists rarely see this disease. Experience matters for treatment outcomes.

Get a Second Opinion

A second opinion from a mesothelioma specialist is strongly recommended, even if you trust your current care team. Major cancer centers often offer remote consultations.

Learn About Treatment Options

Treatment typically includes surgery, chemotherapy, immunotherapy, radiation, or combinations. Ask about clinical trials—they may offer access to promising new treatments.

Document Your Asbestos Exposure

Try to identify where and when you were exposed to asbestos. This information helps your medical team and may be relevant for compensation options.

Build Your Support Team

Consider assembling a team: oncologist, surgeon (if applicable), palliative care specialist, social worker, and family caregivers. Don't try to navigate this alone.

Questions to Ask Your Doctor

Bring a list of questions to your appointments. Consider having someone take notes or record the conversation (with permission).

About Your Diagnosis

What type of mesothelioma do I have?
What stage is my cancer?
What is the cell type (epithelioid, sarcomatoid, biphasic)?
Has the cancer spread beyond the original site?

About Treatment

What treatment options are available for my specific situation?
Am I a candidate for surgery?
What are the potential benefits and risks of each option?
Are there clinical trials I should consider?
How will treatment affect my daily life?

About Care

How many mesothelioma patients do you treat each year?
Should I get a second opinion from a specialized center?
What support services are available (social work, nutrition, palliative care)?
What symptoms should prompt me to call your office?

What to Expect

The coming weeks will involve additional tests, consultations, and decisions. This is normal. Take time to understand your options before committing to a treatment plan. Seeking a second opinion does not delay treatment significantly and often provides valuable information.

Many patients find it helpful to:

Bring a family member or friend to appointments
Keep a folder with all medical records and test results
Write down questions as they occur to you
Ask for written information about your diagnosis and treatment options
Connect with other mesothelioma patients or support groups