May 6, 2016

A Podcast To Raise Awareness

Our Podcast To Raise  Awareness About Mesothelioma

On April 26th, 2016, Cara Tompot of The Mesothelioma Center joined Donna Kay and Jules on Chronic chronic chronicles podcast logoChronicles to help raise awareness about Mesothelioma. To help raise awareness about mesothelioma. Chronic Chronicles is available on TalkShoe, iTunes and Stitchers Radio.

Question: Why did The Mesothelioma Center partner with the Chronically Awesome Foundation?

When I came across the Chronically Awesome Foundation, I knew we would be an excellent partnership. Not only did we both raise awareness and improve education about rare and underfunded diseases, but we are both care organizations, meaning we focus on improving the lives of patients right now, not just those who will be diagnosed in the future.

Also, both of our organizations are active on social media, which helped us forge a friendship and ultimately a partnership. We both saw the value in providing information about mesothelioma. For many people, mesothelioma is a word they only know from TV advertisements. Patients need to know there is help available.

Question: What is mesothelioma?

Mesothelioma is an aggressive cancer caused by asbestos exposure. There are several different types of mesothelioma, but the two most common are pleural mesothelioma, which affects the lining of the lungs, and peritoneal mesothelioma, which affects the lining of the abdomen.

Question: Is a mesothelioma diagnosis common?

3000 a year are diagnosed with mesotheliomaThankfully, no. Every year, an estimated 3,000 people are diagnosed with mesothelioma, which compared to other chronic conditions is relatively low. Given this, the research and funding to find a cure for this cancer is limited.

Veterans are disproportionately diagnosed with mesothelioma. In fact, 30 percent of mesothelioma diagnoses are actually given to veterans. This is because asbestos was so commonly used in the military. So if you are a veteran, and you begin to experience symptoms that may be resulting from undetected mesothelioma, be sure to visit the VA as soon as possible.

The most challenging aspect of mesothelioma is the long latency period. It can often take 20-50 years after the time of asbestos exposure to be diagnosed with the deadly cancer.

Question: With such a long period of time between exposure and diagnosis, what should people be looking for?

First of all, if you believe you have any history of asbestos exposure, it is so important to tell your doctor. Regular monitoring and checkups can make a big difference. If you begin to feel any of the common mesothelioma symptoms, be sure to alert your doctor and remind them of any possible asbestos exposure right away. Common symptoms include Shortness of breath, chest pain, abdominal pain, wheezing, a dry cough, and difficulty breathing.

Of course, these symptoms can also result from other types of lung cancer or lung diseases, such as COPD, pulmonary fibrosis, asbestosis and even pneumonia. With this symptom overlap and the complexities involved in making a mesothelioma diagnosis, it is possible for a physician to misdiagnose their patient.

it can take 20 to 50 years to develop mesotheliomaQuestion: If misdiagnosis is so common, what can people do?

Misdiagnosis is, unfortunately, common since mesothelioma can be diagnosed as another form of lung cancer or a noncancerous condition such as asbestosis or COPD.

Your primary care doctor will do an X-ray to determine whether there is anything abnormal in your lungs or abdomen. If there is something concerning, he or she may do additional testing before directing you to a pulmonologist (lung doctor).

If mesothelioma is suspected, please see a mesothelioma specialist. They are the only type of doctor trained and aware of recent developments. That is your best chance at getting the best care. We can help you find a mesothelioma specialist near you.

Question: Is there a cure for mesothelioma?

No. While medical advancements are providing better treatment options; patients are still given a rather dismal prognosis (often less than a year from diagnosis). But treatment options are improving.

The main treatment options fall under one of three categories: Chemotherapy, radiation, and surgery. Often, patients use multiple types of treatment, which is referred to as multimodal treatment.

Recently, some research has supported immunotherapy, which uses a patient’s own immune system to fight the cancer, as a fourth pillar of treatment options.

Depending on what stage a patient is diagnosed, the more options he or she will have.

Question: How does stage affect prognosis?

Mesothelioma often takes several weeks or months to diagnose due to complexities of the disease and a high rate of misdiagnosis. This means patients are often diagnosed after the cancer has progressed too far, which can limit treatment options and ultimately shorten survival time.

Early diagnosis can make a huge difference. Survivors are beating the odds every day, and often that is resulting from early diagnosis and aggressive treatment.

Question: What is asbestos and where is there a risk of asbestos exposure?

Asbestos is a known carcinogen that can be found in older homes, household materials and, scarily, children’s toys. The substance was originally mined and used for its heat resistance and insulating properties.

Unfortunately, it is highly toxic and has been directly linked to numerous health conditions, including asbestosis (a chronic lung disease) and mesothelioma (a deadly cancer).

Question: Is asbestos banned in the United States?

Surprisingly, no. While its use is limited, asbestos can still be imported and exported to the United States. That’s why it is still possible to find it in recent products. Recently, asbestos was found in children’s crayons, modeling clays, and other children’s toys.

This means that people are still being exposed to asbestos today, which could lead to a mesothelioma diagnosis down the road.

What other services does The Mesothelioma Center offer?

We are here to help connect patients with the resources they need. Most patients will begin by speaking with a Patient Advocate, who can help determine what resources may be useful.

We assist mesothelioma patients by:

  • Referring patients to a nearby mesothelioma specialist or cancer center
  • Connecting patients with our on-staff nurse or physician to discuss their current condition
  • Providing information about treatment options or clinical trials
  • Helping veterans file for VA benefits
  • Offering a monthly online support group
  • Providing informational literature
  • Assisting with finding financial and legal options

Our main goal at The Mesothelioma Center is to make sure that no mesothelioma patient or caregiver has to go through this journey alone. Whether you simply have a question regarding your diagnosis or are looking for additional information about benefits available to you, we want to make sure every patient has access to the resources they need.

Battling mesothelioma is difficult enough. We are here to make everything else easier.

 

The Chronically Awesome Foundation, specifically Jules and Donna Kay thank Cara for her time today. We also thank Cara, The Mesothelioma Center, and the patients who have been working with us so far this year. We look forward to the work we will continue to do together.