What’s Next? Planning for Care After a Mesothelioma Diagnosis

Mesothelioma is a rare and aggressive cancer caused almost exclusively by prolonged exposure to asbestos. A diagnosis of malignant mesothelioma is usually unexpected, and can be devastating to the patient and his or her family. Responding quickly and definitively to that diagnosis is imperative to attaining the best possible outcome.

Unlike more common cancers such as prostate, breast and lung, mesothelioma remains a mystery to much of the medical profession, including some oncologists who rarely see or treat it. Answers to questions can be hard to find. There are 200,000 new cases of lung cancer diagnosed each year in the U.S. compared to just 3,000 new cases of mesothelioma.

Most Important Step to Take

The first and most important step you can take is finding a mesothelioma specialty center and a staff that is prepared to handle this disease. It is critical to extending survival for this cancer with no definitive cure. Patient advocates at the Pleural Mesothelioma Center can put you in touch with a specialty center and a top mesothelioma surgeon through their Doctor Match program. They can set up an initial consultation and even help make travel arrangements, if necessary.

The next steps you should take include:

  • Deciding on a treatment option. That may include either minimally invasive or more extensive surgery, chemotherapy, radiation, or a combination of all three. A specialty center will individualize the treatment.
  • Exploring your eligibility for a clinical trial. This is where the latest, cutting-edge therapies may be available. It could include immunotherapy, gene therapy or photodynamic therapy.
  • Asking an extended family member or friends to help you through this. Don’t try to do this alone. Both patients and individual caregivers will need assistance in this journey. Home & Hearth Caregivers’ in home care services can help tremendously, personalizing assistance depending upon your needs.
  • Asking questions. Make sure you understand all your options. Get answers. Get second opinions if you aren’t comfortable with the process or with the decisions being made.
  • Taking an integrative approach. This includes treating your mind and body beyond the traditional medicine you will receive at a specialty center. Consult your specialist, but alternative medicine can be helpful, too.
  • Finding a support group, where you can talk with others with the same diagnosis. This can be in person or by phone. No one will understand what you are going through like someone who has been there. It takes away the feeling of isolation.

A specialist can explain all the disease details. He or she will explain the cell type of your disease (epithelial, sarcomatoid or biphasic), the type of mesothelioma (pleural or peritoneal) and the stage of the cancer (I, II, III or IV). These all factor into treatment options that will be available.

“Mesothelioma isn’t lung cancer. To understand the subtleties of it, you need an expert,” said mesothelioma specialist Dr. Hedy Kindler, director of the Mesothelioma Program at the University of Chicago. “Especially at the beginning, it’s important to have someone who is comfortable with the disease, a quarterback who understands all the options out there.”

Some specialty centers will work closely with your local oncologist, designing a treatment plan that may help limit any traveling you will need to do.

Veterans in the VA Healthcare System may need a referral to see a specialist. There are two outstanding specialists within the VA System. They are Dr. Lebenthal, who also is part of the VA Boston Healthcare System, and Dr. Robert Cameron at the West Los Angeles VA.

Help is always available at the Pleural Mesothelioma Center or by visiting PleuralMesothelioma.com. Home & Hearth Caregivers is also on hand to provide professional in home care services that can help make life more comfortable for those with mesothelioma or any other chronic condition. Contact us at 800-349-0663 to learn more.

Tim Povtak is a content writer for the Pleural Mesothelioma Center and PleuralMesothelioma.com.

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