Mesothelioma Patients Face Frustration Understanding Their Diagnosis and Treatment Options

Mesothelioma is a rare and complicated disease. Because many patients don’t know what mesothelioma is or how it works, they feel completely overwhelmed by their mesothelioma diagnosis and what it means for their survival. Patients also have a hard time understanding the various life-prolonging treatment options available.

Patients who are confused about their mesothelioma diagnosis or treatment options have a significant disadvantage. Without a clear understanding of their disease, patients may be caught off guard by concerning symptoms and aggressive treatments.

The less a patient understands their health condition, the harder it is to treat. Doctors and patient advocates must be aware of this knowledge deficit to provide better patient care.

A Mesothelioma Diagnosis Is Difficult to Understand

Many patients have never heard of mesothelioma before receiving a diagnosis. Unlike several other cancers, such as breast cancer or lung cancer, mesothelioma is a very unique and complex disease.

Mesothelioma attacks the tissues that line the lungs, abdominal cavity or heart, and spreads much faster than other cancers.

Mesothelioma patients face extreme emotional turmoil over the disease’s bleak prognosis. On top of this, some patients struggle to understand how the disease progresses and what to expect with treatment. It’s no wonder that patients find it hard to cope.

Doctors play an important role in educating patients, providing empathetic support and ensuring they fully understand their diagnosis. Unfortunately, some doctors have trouble communicating this information. The best doctors offer plenty of helpful advice and thoroughly explain all treatment options to their patients.

The results of a recent Japanese study suggest that doctors need to improve their communication skills to educate their mesothelioma patients better. Patients want clear and precise information from their doctors. The study also found that patients want their doctors to communicate in layman’s terms instead of using complicated medical jargon.

Mesothelioma patients should not be left feeling hopeless. While mesothelioma is challenging to control, there are several advanced treatment options can that slow its growth.

Treatment Options Are Limited and Vary Across Patients

Most mesothelioma treatment approaches involve multiple methods, including surgery, chemotherapy and radiation. These treatment options vary from patient to patient.

The different treatments are most effective at specific stages of the disease. For example, the first stage of pleural mesothelioma is typically treated with aggressive lung surgery. Stage 4 mesothelioma is often treated with palliative care to manage symptoms. However, the best time to administer each treatment also depends on each unique mesothelioma case.

Mesothelioma patients are frequently overwhelmed by the amount of information available and find it challenging to navigate their options. Additionally, without the help of a specialist, patients may never discover promising new treatments or clinical trials that could help them.

A mesothelioma specialist will personalize your treatment plan and ensure you know what to expect throughout the process.

Work With a Mesothelioma Specialist for the Best Chance of Survival

Although mesothelioma patients face unfavorable survival rates, new treatment advances allow more people to live longer after their diagnosis. Working with a mesothelioma specialist is crucial for receiving the best treatment available. Most general doctors have little experience with mesothelioma. On the other hand, specialists know precisely how mesothelioma progresses and responds to treatment.

Ask your specialist plenty of questions to better understand your mesothelioma diagnosis, such as:

  • What type of mesothelioma do I have?
  • What is the stage of my mesothelioma?
  • Where in my body is the cancer?
  • Has the cancer spread to other locations?
  • Do you have experience treating this kind of cancer?
  • What are my treatment options, and what do you recommend?
  • How can I get a second opinion?

It’s a good idea to write down a list of questions before visiting with your specialist. Take notes during these conversations and bring another person with you for help remembering information. Also, don’t be afraid to ask your doctor to rephrase their answers if you have trouble understanding.

Whether or not you’re satisfied with the information that your doctor provides, always get a second opinion. Obtaining as much information as possible about your specific mesothelioma diagnosis will help you understand your best course of treatment.

Fortunately, you may be eligible for legal compensation, which can help you pay for specialists and treatments. The only known cause of mesothelioma is exposure to asbestos. If you were exposed to asbestos by a previous employer or a negligent product manufacturer, consider seeking compensation for your illness.

Author:Stephanie Kidd

Editor-in-Chief of the Mesothelioma Justice Network

Stephanie Kidd

Stephanie Kidd works tirelessly as a dedicated advocate for the vulnerable and underrepresented. Stephanie worked as a copywriter for an agency whose focus was communicating safety procedures on construction work sites. With her extensive background in victim advocacy and a dedication to seeing justice done, Stephanie works hard to ensure that all online content is reliable, truthful and helpful.

Last modified: June 18, 2019

View 2 Sources
  1. “Physician requests by patients with malignant pleural mesothelioma in Japan” BMC Cancer. Retrieved from https://bmccancer.biomedcentral.com/articles/10.1186/s12885-019-5591-7. Accessed on May 23, 2019.
  2. “Questions To Ask About Malignant Mesothelioma” American Cancer Society. Retrieved from https://www.cancer.org/cancer/malignant-mesothelioma/detection-diagnosis-staging/talking-with-doctor.html. Accessed on May 23, 2019.