I Have Mesothelioma, Now What?

MAAC StaffApril 26, 2018
I have mesothelioma, now what?

A cancer diagnosis often comes with little warning, and unfortunately about half of all men and one-third of all women in the United States will face that news at some point in their lives. This news may become even harder to process when facing a diagnosis with an aggressive cancer that has an average prognosis of just about one year.

Though so many of the statistics around mesothelioma are cold and frightening, there is always hopes for new clinical trials and emerging treatments that can help patients beat the odds. After taking some time to process the news and question what comes next, patients and their loved ones should keep these steps in mind as they face this new journey.

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Learn All You Can About Mesothelioma

Every cancer diagnosis, even when facing the same type and stage of cancer, is completely unique. It’s important to remember that statistics around survival rates or general information on treatment options and side effects does not necessarily indicate exactly what you will experience. Your life expectancy and treatment plan will be based around particulars of your diagnosis and information about you, like your age and overall health.

But arming yourself with this type of information, even if not particular to your specific case, can help you get an idea of what to expect in the coming months, as well as help inform questions for your doctor and decisions around your treatment plan.

Once you have your diagnosis with the type and stage of your mesothelioma, you and your family should take some time to research the disease and start to get a better understanding of some basics like:

  • Where is the mesothelioma located?
  • What are the common symptoms for this type of mesothelioma?
  • What’s the average prognosis for someone with this type and stage?
  • What are some common treatment options?

While doing your own research is valuable, it’s important to talk to a cancer specialist who can give you more information about your individual case. A mesothelioma specialist with a lot of experience in this rare disease will also be the best person to determine the best treatments for you.

Find a Mesothelioma Specialist

Experts agree that one of the most important steps you can take to improve life expectancy is finding an experienced mesothelioma doctor. Since the disease is so rare, many primary care doctors or oncologists may not have even seen or treated one case of the cancer during their careers. A specialist in the disease will have the needed experience in understanding the complexities of mesothelioma and developing a personalized treatment plan.

While there is no cure for mesothelioma, many specialists are involved in cutting edge research for new cancer treatments and diagnostic techniques that have helped to lead to improvements in survival rates and more patients achieving remission in recent years. Working with a specialist like this can potentially provide more treatment options, as they will be up-to-date on new clinical trials you may be eligible for.

Mesothelioma specialists are located at top cancer centers around the country. In fact, all of the top five cancer centers in the country have dedicated mesothelioma programs. As you research, be sure to keep in mind their location and how far you may be willing to travel for treatment.

Stay Informed About the Newest Mesothelioma Treatments

When considering potential mesothelioma doctors, you should also keep in mind the larger cancer support team at the medical center you are considering. Depending on your treatment plan, you may work with a number of health care professionals, like oncologists with different specialties in areas like surgery or radiation therapy, as well as nurses and social workers. Feeling comfortable and trusting of your larger health care team will make treatment and after care less daunting.

Also, remember to bring a loved one with you to your appointments, whether a friend, family member or partner. Not only can they help calm any nerves or anxiety you may have, but they can act as a second pair ears to absorb all the information in your appointment and help ask questions.

How to Pay for Treatment

In the midst of learning about your diagnosis and starting to make treatment decisions, it’s also important to consider the logistics of cancer care. Countless studies have focused on the rising costs of treatment, with some new cancer drugs costing upwards of $200,000 for one year of treatment. With this in mind, it’s important to plan financially for your diagnosis and all it entails.

First, dive into the details of your health insurance plan. Americans in general have been found to have poor understanding of health insurance and how their plan works. Learning about your plan’s coverage and out-of-pocket expenses to expect can help you avoid surprise medical bills. Being aware of the details of your health insurance in regard to clinical trials is also important as you consider your treatment options. Some plans won’t cover any extra tests or treatments related to the trial unless it fits certain criteria, so be sure to ask your provider before moving forward.

It’s also important to consider the secondary costs of treatment. If your doctor is located far away, you’ll likely face additional expenses of travel and lodging for extended periods of time while you have treatment and go through the healing process. Fortunately, many cancer centers and organizations like the American Cancer Society offer different programs for cancer patients to help cover or offset these expenses.

Think about options for your household bills, too. Life doesn’t stop for cancer, and with the high costs of treatment, it can be difficult for the average household to also keep up with the normal bills. Luckily, many state and local communities offer support services to help alleviate these financial strains. Some common types of support services may help cover utility bills, food and child care. These programs may also offer assistance in covering medical expenses and transportation, and often are also available to cancer survivors in recovery.

Lastly, don’t forget your legal options. In the case of mesothelioma, millions of people are exposed to asbestos each year because of the wrongdoings of various companies. Workers and families are put at risk of exposure because asbestos was so widely used in thousands of products and buildings, despite these businesses being aware of the dangers. Talking to a lawyer to explore your legal options may seem like too much to handle when facing treatment, but an experienced attorney can handle the process for you.

These are just some things to keep in mind as you move forward in this new life journey. Though it’s scary, there is always hope.