Caretakers and Patients: Coping with Mesothelioma as a Young Adult

We are happy to introduce our guest blogger, Nicole Godfrey, from Mesothelioma Guide. She draws our attention to a rare form of cancer, mesothelioma, helping us understand what it is, that young adults are affected, and the challenges of caring for a young patient. Nicole is a writer and a community outreach team member at Mesothelioma Guide. When she isn’t working, she enjoys reading graphic novels and writing fiction. She also is an avid theme park enthusiast.

Mesothelioma is a rare but serious type of cancer. It usually occurs in the lining around the lungs or abdomen. When a confirmed diagnosis occurs, life changes not only for the patient, but it changes for their friends and loved ones as well.

Young people can often go overlooked in the mesothelioma community because mesothelioma usually occurs in people over 60. However, young adults are still affected. Some young adults find themselves filling the role of caretaker for a family member with mesothelioma. Other young adults find themselves unexpectedly diagnosed with mesothelioma.

The Cause of Mesothelioma

Mesothelioma is caused by exposure to asbestos. Asbestos fibers can float in the air as dust. When they are breathed in or swallowed, they can damage cells and eventually cause tumors to form. Asbestos is a mineral that was used in many products because it is extremely durable and a good heat conductor.

Most people were exposed occupationally, such as factory workers, shipbuilders, military veterans or insulation manufacturers. Unknowingly, many family members of people with asbestos related jobs, were also exposed to asbestos through secondary exposure. Often workers came home and still had asbestos fibers and dust on their clothing. Family members could breathe in asbestos through contact with the worker’s clothes.

Unexpected Diagnosis

The only way a person can get mesothelioma is by being exposed to asbestos. Mesothelioma takes about 20 to 50 years to develop after exposure to asbestos. This latency period can cause diagnosis to come unexpectedly, especially for younger patients who were exposed to asbestos as children without knowing.

In the United States there are approximately 2,000 to 3,000 cases of mesothelioma diagnosed each year. When a person is diagnosed, it often takes both them and their loved ones by surprise.

Due to its rarity, many doctors don’t have experience with diagnosing and treating mesothelioma. Under many circumstances, patients are misdiagnosed. They can be diagnosed as having a cold, the flu, or pneumonia. Patients are even sometimes diagnosed as having other types of cancer.

Some common mesothelioma symptoms are

  • Chest pain
  • Difficulty breathing
  • Dry cough
  • Weight loss  

When a person is officially diagnosed, sometimes it is too late and their treatment options are limited. This gives many individuals less time to cope and understand what is happening, before they lose their loved one.

Being Diagnosed Young

The average age of someone being diagnosed with mesothelioma is over the age of 60. However, there are cases where someone can be diagnosed in their 20s or 30s.

Jodi Page and Alexis Kidd are two survivors who are featured on Mesothelioma Guide’s website. They both were diagnosed at an uncommonly young age.

Jodi was diagnosed with malignant pleural mesothelioma when she was only 26 years old. She was given 19 months to live. With her family caring for her, including her dad, aunt, and sister, she beat the odds and is now a 16-year survivor.  

Alexis was diagnosed with peritoneal mesothelioma when she was 37 years old. She was given 6 months to live. With her husband supporting her, she is now a 10-year survivor.

 

By seeking mesothelioma specialists, treatments, and having support and care from loved ones, many patients are beating the odds of their original prognosis.

Having Support

A recent study revealed that the average age for a caregiver is 49.2 years old. However, 48% of caregivers in the United States are between the ages of 18 and 49.

A mesothelioma caregiver might feel like they are overwhelmed with many new responsibilities, such as feeding and bathing their loved one. They also may struggle with becoming their loved one’s healthcare or financial advocate.

In times of uncertainty patients need a strong support system. Mesothelioma caregivers also need support to get them through times where they feel like their world is being turned upside down.

It is always important for both mesothelioma patients and caregivers to know that they are not alone. There are mesothelioma support groups that both patients and their loved ones can get involved in. These groups can be found in their local community, online, or even by phone.

If you or someone close to you has been diagnosed with mesothelioma, you may find yourself having a lot of questions. For help seeking your answers, you can always contact Mesothelioma Guide.

Resources:

https://www.mesotheliomaguide.com/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1449485/

http://www.aarp.org/content/dam/aarp/ppi/2015/caregiving-in-the-united-states-2015-report-revised.pdf

https://www.caregiver.org/caregiver-statistics-demographics

http://www.cancer.org/cancer/cancercauses/othercarcinogens/intheworkplace/asbestos