A Guide to Navigating a Mesothelioma Diagnosis

A mesothelioma diagnosis, or learning of any chronic disease can feel completely overwhelming. It’s a life changer. But, as I’ve learned in dealing with my husband’s diagnosis of IBM (Inclusion Body Myositis), knowledge is power. The more we learn about not only the illness itself, but the means of dealing with it emotionally and practically, the more stable our lives have become.

A flood of questions arise that too often render us confused and stunned into inaction, especially as we grow older. What to do, how to navigate it, how, when and where to seek help and support, to name a few.

Like IBM, Mesothelioma is a relatively rare disease affecting only 3,000 new people every year, but if you are one of those 3,000 it’s life changing.  In honor of Healthy Lung Month, this article will answer some of those initial questions. When you begin to take action again after a diagnosis, you begin to take back your life.

mesothelioma diagnosis
Talk to your doctor about available resources to help you cope with a mesothelioma diagnosis.

How Does Mesothelioma Develop

Mesothelioma, a type of cancer, most often impacts the lungs. It can also develop in the heart or stomach. Exposure to asbestos puts a person at risk of developing this disease. Asbestos fibers breathed in through the lungs can cause tumors to grow in the mesothelium. The mesothelium is protective membrane that covers the lungs, abdomen, heart and testes.

While no amount of asbestos exposure is safe, not everyone who has been around asbestos is at risk of developing mesothelioma. Heavy exposure over a long period of time creates the highest risk of developing mesothelioma. Patients are often exposed while on the job in certain industries. Others may have lived in an older home built with asbestos-containing materials. Secondhand exposure is also possible, when an individual lives with someone with carrying asbestos fibers on their clothes and body.

Due to the rarity, long latency period, and unspecific symptoms of mesothelioma, it can be difficult for patients to receive a proper diagnosis. Even if you do not have symptoms, tell your primary care physician of any exposure to asbestos. They know the signs of this disease and can keep an eye out for them for you.

After a mesothelioma diagnosis, seek treatment right away. Talk to your doctor about the diagnosis. A trained physician will help you manage any symptoms and improve your mesothelioma prognosis.

Treatment Options

There are three types of treatment options available to mesothelioma patients at this time. The treatment plan will be determined by the specific type of mesothelioma, how early it was detected, and the overall health of the patient.

Most treatments focus on alleviating symptoms and extending or improving quality of life. More than one treatment may be used at once to improve the prognosis.

Treatment options include:

Chemotherapy: Chemotherapy is a common option for mesothelioma patients to kill cancer cells and prevent them from reproducing. For first-line treatment, doctors administer cisplatin or carboplatin with pemetrexed.

Radiation: Radiation is most often used after surgery to kill any remaining cancer cells. Studies have shown, however, that it can be effective before surgery.

Surgery: There are three main purposes for surgery: 1) to remove malignant tissue, 2) diagnose the cancer, and 3) ease symptoms. Surgery is often used as part of a multimodal treatment plan to improve the outcome.

When these standard treatments are not the best option for a patient, experimental mesothelioma treatments and clinical trials are sometimes available. These emerging options, such as immunotherapy, gene therapy, and photodynamic therapy, have shown early success. Mesothelioma patients may find themselves eligible for one of these *groundbreaking* trial treatments as scientists further their quests to find effective treatments and a cure for mesothelioma.

Life After Diagnosis

As mentioned earlier, a mesothelioma diagnosis is a traumatic experience.  Fortunately, there are plenty of resources for patients to assist in navigating life post-diagnosis.

mesothelioma diagnosis
Assemble a medical support team.

In addition to your regular doctor, other specialists can help improve your experience. A physical therapist will help with some specific challenges associated with this disease, and a respiratory therapist can help alleviate shortness of breath. Some mesothelioma patients have trouble with weight loss. It can be very helpful to include a dietitian on your healthcare team. Ask your primary doctor for recommendations.

Emotional support is another important component of mesothelioma care. Mesothelioma support groups, online communities, and religious institutions provide understanding and support.  Connecting with mesothelioma survivors can provide encouragement, support and inspire hope. Again, your doctor help you find local resources.

There is also financial assistance available for mesothelioma patients. Many companies used asbestos in their products despite being aware of the health risks. In some instances, money was set aside for the victims. You may want to contact a lawyer to determine if you are eligible for compensation.

mesothelioma diagnosis
You don’t have to go it alone.

Lastly, learn about this disease and share what you learn with those closest to you. Healthy Lung Month is a great opportunity to spark a conversation about mesothelioma and an opportunity to share your experiences. It just might help someone else.


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