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What is it like to live with mesothelioma?

The truth is that a mesothelioma diagnosis is a tough thing. It’s hard on anyone diagnosed with cancer, and it’s hard on friends and family members.

Because there’s no reliable cure, the diagnosis often leads to a lot of uncertainty. What are the treatment options? What are the odds? How long do I have? How will I feel? How will I pay for everything? The questions pile up fast, so it can be important to step back, take a breath and seek greater clarity.

The statistics only tell a part of the story

Looking for more information about mesothelioma can be scary. Many of the studies focus on survival rates, the stages of diagnosis and palliative care. However, it’s important to remember that statistics tell the general story for many people. They don’t necessarily tell your story.

They don’t tell you about the factors that might lie outside their study. They rarely tell you the human side of the story. For those details, you may need to turn to more anecdotal survivor stories.

The American Cancer Society (ACA) hosts one such story on its website. The story addresses the situation of a 70-year-old woman who lived with mesothelioma for more than seven years by the time she shared her story. That’s already beating the odds, but the details she shared are even more telling:

  • She was diagnosed with pleural mesothelioma after first thinking her coughing, chest pains and shortness of breath might have been signs of pneumonia. Early misdiagnoses are common. However, because the woman kept looking for answers when her symptoms didn’t worsen, she eventually got a biopsy and the diagnosis she needed to start treating the root problem.
  • The doctors caught her mesothelioma early enough to perform surgery. Surgery isn’t always an option, but the most aggressive treatments often produce better results. Even so, the surgery didn’t remove all the cancer. After her surgery, the woman still needed to go through chemotherapy.
  • Years later, the cancer returned. No one wants to go through treatment only to have their cancer return. But the woman told the ACA she still manages to remain active. She takes pain medicine and an immunotherapy drug. Even though such treatments don’t destroy the cancer, they may slow its progression and improve a person’s quality of life.
  • The right support network was critical throughout the process. The woman said her support network consisted of her dogs and siblings. She didn’t have a spouse or children, but her support network gave her the strength and encouragement to get through the most challenging days.
  • It’s important to note the woman’s story reflected a positive attitude. As Dr. Gould pointed out, there are significant ties between a good attitude and medical results. In the woman’s case, this didn’t mean an unrealistic attitude. After the cancer returned, she didn’t tell herself she was going to beat it. But she sought to make the most of each day, celebrating life with her friends and family.

Even as the woman’s story reveals what it’s like to live with mesothelioma, it hints at many of the frustrations. For example, the woman struggled to think about how she might have gotten the disease. Mesothelioma almost always owes to asbestos exposure, but it might not appear until many years after exposure.

Getting the right help is important

It’s important to get the right help to remain grounded and positive. But good help is important for other reasons, too. A study published in 2019 found that mesothelioma patients averaged nearly $25,000 in hospitalization costs. On top of these expenses, patients must frequently pay for chemotherapy and medications. Altogether, mesothelioma treatments may cost upward of $11,000 per month.

Insurance may cover many of these expenses, but no one wants to pay thousands of dollars out of pocket to cover the gaps. This is why so many mesothelioma victims seek legal representation. Victims who get the financial recovery they deserve may better focus on their physical and mental health.

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