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Navigating A Diagnosis of Mesothelioma

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This post was written by guest blogger Tim Povtak.  Tim is a former newspaper reporter  who has been writing for The Mesothelioma Center since 2011.  The Mesothelioma Center provides incredible support and resources for people and families who need help understanding and coping with this disease.

Knowledge is key when it comes to battling malignant mesothelioma cancer. The more you know, the better you will feel about the fight. Not only is it tough to pronounce, it’s even tougher to understand all the intricacies involved.

Getting skilled help is crucial. It’s just not easy to do.

To help someone first diagnosed with mesothelioma, it’s vital to find the right resources – doctors and other medical professionals who see it regularly —  and a support group that is traveling the same route.

There is no replacement for experience.

Mesothelioma is a rare cancer – only 3,000 cases are diagnosed annually in the United States — caused almost exclusively by an exposure to asbestos, the naturally occurring mineral that was used extensively through much of the 20th century.

Reliable information can be difficult to find. Although there is no cure, recent curative advancements have been made. Novel therapies are being developed today. Alternative, supplemental remedies can help, too.

Selecting the right specialist might be the most important decision a patient will face. That’s where help, and support, is needed.

A typical diagnosis of mesothelioma may sound like a death sentence – six to 18 months was the norm not long ago – but many patients are surviving longer, and some even thriving, with the right help.

Rule No. 1: Don’t Do It Alone

As a caregiver, or just good friend, it’s important to learn about the disease. There is an easy-to-read encyclopedia of resources available at Asbestos.com.

The Mesothelioma Center helps patients and caregivers find the best doctors and the most appropriate cancer centers with the latest and greatest, most technologically advanced equipment. This is not the time to take short cuts.

At Asbestos.com, there are Patient Advocates who can advise patients and caregivers on where to turn, what to do next and how to connect with medical professionals. There is a registered nurse on staff to answer questions. There is a Veterans Department with counselors to answer questions that might be exclusive to veterans, helping navigate through the often-frustrating VA Health Care System.

Rule No. 2: Find a Support Group

There is a support group at Asbestos.com that meets the second Wednesday of each month at 8 p.m. EST. You can join in online or by phone. It’s moderated by a licensed mental health counselor and open to mesothelioma patients, families and caregivers who can ask questions, discuss concerns and chat on various topics.

There also is a Mesothelioma Facebook page, where ideas are exchanged and support is received. Also, check out the Wall of Hope, a section on mesothelioma survivors who have beaten the odds because they refused to concede to this terrible cancer.

Rule No. 3: Stay Positive

There is hope, so don’t believe all the gloom and doom. Explore the world of clinical trials. Mesothelioma treatment is changing. Gene therapy, immunotherapy, photodynamic therapy are the future, but they aren’t yet part of the traditional approach. They are available, though, through various clinical trials. Go to the National Cancer Institute website to see what is being offered.

Something could work. There is no universal therapy that works for everyone, but people respond differently to different treatments. Finding the right one sometimes takes the help of a friend.

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