What to Expect After a Mesothelioma Diagnosis: A Timeline
Mesothelioma doesn’t happen overnight. What comes down to a single diagnosis is typically years in the making. Continue reading to learn what the timeline of developing and living with mesothelioma may look like. For a comprehensive list of doctors and specialists you may interact with before, during, and after your mesothelioma treatment, visit our My Cancer Care Team page.
Exposure to asbestos is the beginning of the mesothelioma timeline. This durable, fire-proof mineral was mined and used extensively in products such as insulation and brake pads during much of the 1900s. Commonly, mesothelioma patients encountered asbestos on the job or during military service. In 1977, the International Agency for Research on Cancer recognized asbestos as a carcinogen (a cancer-causing substance). Since then, most new uses asbestos have been phased out in the United States, although the material is still not entirely banned.
Asbestos Latency Period
Asbestos exposure generally happens decades before symptoms appear. The time between exposure and the development of mesothelioma is called the latency period. Asbestos fibers trapped inside the body lodge in the lining of the chest, abdomen, or heart resulting in inflammation, irritation, and scarring. Next, the body lubricates the area more, leading to fluid buildup, which can cause cell mutation and the development of malignant mesothelial cells. Asbestos can directly interact with the chromosomes, affect cell-signaling, and induce mutations and pathologic changes that can lead to fibrosis as well.
Onset of Symptoms
Common symptoms of mesothelioma include chest or abdominal pain, a painful cough, difficulty breathing, or unexplained weight loss. These symptoms can be mistaken for those of less severe conditions, like pneumonia or the flu, earlier in the mesothelioma timeline. If you experience these or other mesothelioma symptoms, alert your primary care physician (PCP) immediately, especially if you have a history of asbestos exposure. They may give you an x-ray or refer you to a specialist.
Diagnosis and Prognosis
Typically, the diagnostic process involves a series of imaging tests, blood tests, and biopsies to reach a definitive mesothelioma diagnosis. Because mesothelioma is so rare, many doctors have never seen or treated it. For this reason, and because the disease often mirrors other, less severe illnesses, you will want to work with an experienced doctor. Also, you may want to seek a second opinion.
After your diagnosis, your cancer care team will run additional tests to determine the stage and cell type present in your tumors. This will help them plan the best course of treatment to establish a timeline and maximize your life expectancy.
Your PCP will likely refer you to a pulmonologist if they suspect your lungs are affected or a gastroenterologist if they suspect your abdomen is affected. Usually, these doctors take x-rays or a fluid biopsy. A pathologist will analyze your biopsy to better understand the results and possible treatment options. Often times, they may have to consult with pathologists who have experience in mesothelioma diagnoses. If they determine that you have cancer, they will refer you to an oncologist or surgeon for further diagnosis and to outline a course of treatment.
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You will work with your doctor and the rest of your cancer care team — which may include an oncologist, surgeon, and/or radiation oncologist — to determine the best course of treatment. Your cancer care team may also have other team members like a genetic counselor or specialized nursing staff.
The primary treatments for mesothelioma usually include surgery, chemotherapy, and/or radiation. These treatments aim to remove as much of the cancer as possible. Your doctor may also recommend emerging treatments, such as immunotherapy or clinical trials. Nurses and their support team will provide your pre- and post-operative care.
After treatment, you’ll need time to recuperate. Recovery takes place in-between treatments and includes rest and any palliative care necessary to relieve disease or treatment-related symptoms. You may receive care either at the hospital or at home following primary treatment. During recovery, you are likely to work with the nurses, nurse practitioners, physician assistants, and other support staff on your care team. They will ensure your comfort following treatment and help with pain management. You may also work with a dietitian or physical therapist. During and after recovery, you will continue meeting with your cancer care team to track the results of your treatment and assess the need for future care.
Take Legal Action
Following a definitive mesothelioma diagnosis, you should file for VA benefits (if applicable) and speak with a qualified mesothelioma attorney. Most patients are entitled to financial compensation as a result of being negligently exposed to asbestos. Too, support groups in your community may offer some guidance.
Join the Fight
There are many ways you can join the fight against mesothelioma and asbestos-related diseases. Engage in the community and share your story. Lobby against asbestos manufacturers. Participate in walks and fundraisers that support a cure and spread awareness or donate to research firms.