What to do After a Mesothelioma Diagnosis

Treatment // January 18, 2018

After receiving any diagnosis, it’s understandable to go into overdrive. Some people want to know everything they can about the disease and their prognosis, and others just want to know next steps and avoid statistics. Either way, once the initial shock passes, it’s important to take the time to figure out next steps for the challenges ahead. There is no one right way to approach a cancer diagnosis, like mesothelioma, but the following actions can help guide you through the process and ensure you ultimately receive the best care possible.

Consider a Second Opinion

In the case of mesothelioma, properly diagnosing the disease doesn’t come easily. The rare cancer develops slowly over many years after asbestos exposure. As mesothelioma first presents with nonspecific symptoms, like shortness of breath or chest pain, it is often mistaken for other illnesses, ranging from common ailments like the flu to more serious conditions like chronic obstructive pulmonary disease. This can cause delays in being properly diagnosed, which ultimately delays treatment and can have an adverse effect on a patient’s prognosis.

Many primary care physicians do not have experience with mesothelioma since it is so rare, which can make it challenging to diagnose. Even for patients who receive a mesothelioma diagnosis, it may be beneficial to consider a second opinion before beginning treatment. Many patients believe they need to make a decision right away and jump into treatment before even processing their diagnosis. But deciding an appropriate treatment plan is a big decision to make, and patients should feel comfortable knowing they have an accurate diagnosis and can work with a specialist well versed in mesothelioma.

Find a Mesothelioma Specialist

Whether seeking a second opinion or feeling comfortable with your diagnosis and moving forward with treatment, patients should take the time to find a mesothelioma specialist to work with. Since mesothelioma is so rare, many primary care physicians and even general oncologists do not have the experience in effectively treating the disease. No case is exactly the same, making it even more important to seek the guidance and expertise of a mesothelioma doctor who understands the complexities of the disease and how to treat it on an individual basis.

Though many patients undergo some form of multimodal therapy, often some combination of surgery, chemotherapy and radiation, the treatment plan really depends on the specific case. For instance, someone with pleural mesothelioma with epithelioid cells may be a candidate for aggressive surgery, whereas another patient with pleural mesothelioma but more aggressive sarcomatoid cells may not be a good candidate for surgery because of the cells’ likelihood to spread. A mesothelioma doctor will be the best person to explain all the potential treatment options available for your individual case, as well as any side effects and benefits.

Mesothelioma specialists are also often involved in various clinical trials and leading their own research to improve diagnosis and treatment of the rare cancer. They will be able to explain any available clinical trials you may be eligible for and understand the benefits and risks of emerging treatments that could potentially further extend life expectancy.

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Stay Well Informed About Mesothelioma and Your Care

When facing any diagnosis, patients should be an active participant in their care, which truly stems from being knowledgeable on their disease and treatment plan. The best way to stay informed and be engaged in your own care is to take advantage of the help of your medical team. Go into appointments with questions prepared, so you can get the most out of your time. Bringing a loved one can also be beneficial as a second pair of ears to help ensure you understand everything explained and can take good notes for your own research later.

As you dive into any research on your own, it’s important to make sure you’re drawing information from reliable sources. Visiting forums, for instance, will not be as trustworthy as information on cancer organizations’ sites or information directly from your medical team. Patients also shouldn’t take direct medical advice from these sites, like how to manage any treatment side effects, without consulting their doctor. Even from an authoritative source, your medical team best understands your case and will know the best way to cope with treatment. However, patients should bring up any findings they have in their research and ask questions, so they can better understand their individual needs and their care plan.

Rely on Your Support System

A mesothelioma diagnosis is a lot to handle at once. Understanding all the medical information, making so many decisions, and just coping with your own emotions can be exceptionally trying on your emotional and mental wellbeing. It’s ok to find strength from loved ones or seeking a support group of people going through the same or similar diagnoses. Finding support will make coping with your diagnosis and treatment more manageable, and can potentially help brighten your spirits during such a trying time.

There are many types of support groups that can fit your individual needs, whether you prefer an online group or meeting other mesothelioma patients, survivors and caregivers in person. Looking at cancer organizations like the American Cancer Society, offerings at the hospital or medical center where you’re receiving treatment, or looking at local organizations with support meetings can be a good place to start when finding the right support group for you. But even if a support group isn’t a good fit, don’t be afraid to lean on your friends and loved ones for support. Knowing you’re not alone and having others by your side will make it easier to cope with your mesothelioma and give more hope as your journey continues.