A mesothelioma diagnosis can be frightening, stressful and overwhelming.
What should I do first? What type of treatment is going to be recommended? How will I manage the financial impact of this disease? What will my family do?
These and many other questions may be running through your head. This makes it hard to take positive steps to cope with the diagnosis.
Focusing on concrete actions to take now can help you get organized and move forward.
Learn About the Disease
Understanding how mesothelioma affects your health and quality of life is an important first step. Some people know exposure to asbestos is the main cause of mesothelioma but not much beyond that.
There are several types of mesothelioma, and the two most common, which account for nearly all mesothelioma diagnoses in the United States, are pleural and peritoneal.
Approximately 20 percent of mesothelioma cases are peritoneal and up to 75 percent are pleural.
The other two mesothelioma types are pericardial and testicular. These mesotheliomas are rare compared with pleural and peritoneal disease. Together they account for less than 5 percent of mesothelioma cases in the U.S.
Ask your doctor about the type and location of your mesothelioma. What are the organs or parts of your body affected by the disease? How will the disease’s location impact your ability to live your life? What symptoms should you expect?
For example, if your disease is pleural mesothelioma, it may affect your ability to breathe deeply. You may want to ask for a referral to a respiratory therapist. Gentle stretching, movement and breathing exercises can improve breathing.
Peritoneal mesothelioma can contribute to GI symptoms, such as feeling full early and inability to eat your favorite foods. A registered dietitian can develop an eating plan to meet your needs and keep you strong for treatment.
Get a Second Opinion from a Specialist
Many cancer treatment facilities do not have a mesothelioma specialist on staff. This doesn’t mean people should immediately go somewhere else for cancer care. It simply reflects the fact mesothelioma is rare.
Only a few oncologists are considered experts and specialists in managing mesothelioma. If your original cancer doctor does not have much experience treating mesothelioma, ask for a second opinion.
Do not worry about offending your doctor. Oncologists are used to consulting with others. They also request second opinions from other doctors.
Your cancer center can help you put the pieces in place to get a second opinion. This might include sending scans, medical records and blood tests to the consulting physician.
With this information, the consulting physician may be able to provide additional insights on the best mesothelioma care for your situation.
Talk to a Specialist About Your Diagnosis
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A mesothelioma specialist can be an important link to learning more about clinical trials, too. A specialist may be conducting a study.
An experienced mesothelioma doctor also may have more awareness of ongoing trials appropriate for you to consider.
Seek Social and Emotional Support
If you’ve been diagnosed with mesothelioma, emotional support should be an important component of your care. You can rely on family and friends for support. People who love you want to help.
However, having a rare disease can feel isolating. Sometimes, talking to an oncology social worker or therapist will give you a place to talk openly about your fears without worrying about how your family may react.
Talking face-to-face with someone may not feel right for you. But an oncology social worker can be a great advocate. They can put you in touch with local, regional and national resources for coping with your disease.
Mesothelioma support groups are another option for people newly diagnosed with the disease and for people who have been living with it for some time. Mesothelioma is rare, so your cancer center may not have one. An online support group is another option. This can allow you to connect with people for support and information from a patient perspective.
Prepare Your Body for Treatment
According to a March 2018 article published in The American Journal of Industrial Medicine, taking advantage of supportive therapies reduces distress for mesothelioma patients. Physical therapy and a healthy diet were singled out for their positive effects on patients.
These results support that, regardless of your treatment plan, you can take steps to keep your body strong and weather the physical challenges ahead.
Mesothelioma treatment is more of a marathon than a sprint. You may undergo surgery, radiation therapy and chemotherapy. Sometimes these treatments are delivered together. Other times one may follow another.
Respiratory therapists are an important part of a comprehensive mesothelioma care team. If you’re experiencing shortness of breath or other breathing difficulties, ask for a referral to a respiratory therapist.
Many patients and family members don’t realize, even after breathing difficulties occur, there are steps to improve breathing function. Only a qualified respiratory therapist can develop a plan to best meet your needs.
Keeping your body strong with good nutrition is another important part of mesothelioma care. You need fuel to heal, maintain immunity and rebuild your body during and after treatment. Food is that fuel.
Make eating well a priority. If you are losing weight without trying or having problems eating enough, ask to see a dietitian. Your doctor or nurse may tell you to simply eat more.
A dietitian can take a comprehensive diet history, estimate your unique protein and calorie needs, and learn about your likes and dislikes. This information will be used to create a nutrition plan best suited to you.
Learn About Your Financial and Legal Options
In March 2018, The American Journal of Industrial Medicine published an article on the psychological and emotional distress mesothelioma patients and people exposed to asbestos experienced.
Mesothelioma patients who had access to clear and accurate legal information on the possibility of compensation had less distress.
When faced with a life-threatening disease, financial security can help you cope. Knowing you have financial security is important for you and your family.