What To Do After a Mesothelioma Diagnosis

When a patient receives a diagnosis of mesothelioma, especially malignant mesothelioma, it can be incredibly overwhelming – both physically and emotionally.  The diagnosis impacts you and those who love you, like family and friends. Patients will suddenly find themselves faced with complex medical diagnoses, treatment options and a number of additional medical tests.  As mesothelioma diagnosis often carries a grim prognosis, patients are also burdened by the responsibility of getting their affairs in order and coping with the knowledge that early death is likely. There is no one right path of what to do after being diagnosed with mesothelioma.  However, these steps are the fundamentals which all patients will want to follow to make dealing with mesothelioma easier. 

Step 1: Get a Second Opinion 

Most people who have been diagnosed with mesothelioma will want a second opinion.   Getting a second opinion is very important not only for confirming the diagnosis but also for determining the best mode of treatment. In fact, a second medical opinion should be obtained to insure you have a correct diagnosis and prognosis first because that information will directly impact your treatment choice.

After a biopsy of the infected area, the tissue or fluids will be sent to a pathologist for analysis. Most reputable hospitals will have their other pathologists on staff.  However, most pathologists are only trained in general recognition of diseases and not on specific conditions like mesothelioma.  After a diagnosis of mesothelioma, it is wise to seek out a doctor and pathologist who specialize in mesothelioma.  Patients may need to travel in order to receive the best possible care. There are many organizations that can help with the travel and housing needs associated with mesothelioma.

You can ask your current doctor for the name of a doctor you can consult for a second opinion. If your request does not produce a recommendation then call a university, cancer organization, medical society or hospital for names.1 Whoever you choose to see, make sure the person is experienced in treating mesothelioma.

Step 2: Learn about Mesothelioma and Your Treatment Options 

After a mesothelioma diagnosis, patients must make many decisions and lifestyle changes.  A clear understanding of mesothelioma and treatment options can help patients make the best decisions for their specific situations.

You should read all you can about the disease and write down any questions you may have to present to your doctor. The questions may address the methods of diagnosis, potential treatments, prognosis, clinical trials and many other medical and lifestyle issues. The professionals managing your case will be able to answer many questions you may have concerning your disease and can help you locate information and support resources.1

Step 3: Decide on a Treatment Plan 

Depending on the stage of the mesothelioma, patients may have several courses of treatment available to them.  The most common treatments for mesothelioma are surgery, radiation, and chemotherapy.  These treatments all have their pluses but come with risks of complications and serious side effects. There are many alternative therapies for mesothelioma and also therapies which can be used to combat the side effects of mesothelioma treatment. Some patients may be eligible for clinical trials, though it is very important to weigh the risks of these trials before signing up.

Before agreeing to a treatment plan, you should ask your doctor questions  that address the quality of life from that point forward in addition to questions about treatment procedures and immediate side effects. For example, you may ask:

  • Which treatment will extend my life the longest?
  • What are the side effects of each treatment and can I recover from them or will the treatment degrade the quality of my life?
  • What can be done to improve the quality of my remaining life while living with mesothelioma?
  • What are the chances for cancer recurrence?
  • How can I best prepare for treatment sessions?
  • What will I need to change in my lifestyle to insure I live the highest quality life possible?

Deciding on a treatment plan requires taking into account both medical and quality of life issues. Currently, the prognosis for 5 year survival once diagnosed with mesothelioma is very poor, but research continues to improve detection and treatment. Though death is currently expected within a year after a malignancy diagnosis, there are people who beat the odds every day.  You will have to balance realism with a desire to live the best life you can for the time allotted.

Step 4: Improve Health 

It is very important that people diagnosed with mesothelioma take care of their health.  Some lifestyle activities, like smoking, can exacerbate mesothelioma.  As many mesothelioma treatments are detrimental to patients’ health, it is important that patients eat a healthy diet and take care of their immune system.

In addition, living with mesothelioma is obviously stressful. You can better enjoy your life after diagnosis if you manage the stress. High stress levels can also impact your ability to recover from treatments, and it will certainly affect the quality of your life. People have different methods for reducing stress. Some people enjoy yoga, a hobby, reading or aromatherapy tub soaks. Whatever your favorite way is to relieve stress, it’s important to include it in your lifestyle plan. Stress control can help you maintain your equilibrium during disease progression so you are mentally, spiritually and physically better able to cope and to enjoy your time with family and friends.

Those who are diagnosed with benign mesothelioma or are one of the fortunate people who were diagnosed early must still learn to live with the fear that cancer will appear or recur. To insure that you are able to move on with your life, it’s important to deal with the “what ifs” and overcome the constant fear that is associated with the word “cancer.”2

Step 5: Contact an Attorney 

Unlike most diseases, there are funds set up to compensate victims of asbestos exposure. An attorney can help you access one of the funds so you can get  much needed financial help to cover medical expenses and living expenses. In addition, it may be possible to be awarded compensation to be used for the support of your family after death.

References 

1 How to Get a Second Opinion (Sept 2008) Pamphlet published by the U.S. Department of Health and Human Services – National Women’s Health Information Center.

2 Mesothelioma Coping and Support (2010) Retrieved from Mayo Clinic at: www.mayoclinic.com/health/mesothelioma/DS00779/DSECTION=coping-and-support

3 Living with Uncertainty: The Fear of Cancer Recurrence. (April 2011) Pamphlet published by The American Cancer Society.