If you have just received your mesothelioma diagnosis, you are probably overwhelmed—by thoughts, by feelings, and by treading suddenly into unfamiliar territory. It can be difficult to make sense of what’s happening, let alone knowing what to do next.
However, there are people who have been where you are now, and you are not alone. There are a few steps that people with recent mesothelioma diagnoses can take to make sense of what’s next in order to start their treatment journey.
1. Learn More About Mesothelioma
This may or may not be your first time hearing about mesothelioma, but most people don’t know much about it.
When it comes to something like cancer, knowledge is power. It’s important to know everything you can about what mesothelioma is, and what your mesothelioma diagnosis will mean in your life. The more you know how mesothelioma works and how it affects patients, the better you can prepare for the journey ahead.
Make sure you get a description of what type of mesothelioma you have. There are three types of mesothelioma that may be diagnosed in patients:
- Pleural Mesothelioma: Cancer that develops in the pleura, the thin membrane lining the lungs and chest cavity. This is the most common type of mesothelioma, accounting for around 70-80% of cases.
- Peritoneal Mesothelioma: Cancer that develops in the peritoneum, the thin layer of tissue lining the abdomen. This is the second most common type of mesothelioma, accounting for around 20% of cases.
- Pericardial Mesothelioma: A much rarer cancer that develops in the thin layer of tissue surrounding the heart. This only accounts to around 1% of mesothelioma cases.
From there, you can get the information you need from your doctor and healthcare team, as well as from healthcare specialists, communities and advocates who support mesothelioma patients.
2. Be Curious and Ask Questions
Another essential part of finding out everything you can about mesothelioma is not being afraid to ask questions. You will have a lot of information presented to you at once and will have many important decisions to make in the coming weeks and months. It is entirely reasonable for you to have questions and for you to ask those questions to members of your care team.
Never be afraid to ask about any part of your diagnosis or treatment process. This includes asking to see a mesothelioma specialist—or a second mesothelioma specialist— for a second opinion. No reputable doctor will be offended if you ask for a second opinion. It is your right as a patient, and ultimately helps your mesothelioma doctor to treat you in the best way possible.
You will likely have to choose between several different treatment methods, including chemotherapy, radiation, and surgery. Asking questions to help inform your decision is an expected and important part of the process.
If you are having trouble remembering your questions, write them down before appointments. Alternatively, your care team or doctor may have an online portal through which you can also ask questions.
3. Find a Support Network
Since mesothelioma is a relatively rare cancer, it might feel like there isn’t anyone who understands exactly what you’re going through. However, there are many other people who have been diagnosed with mesothelioma, and many other families and loved ones of those diagnosed with mesothelioma.
Both patients and their loved ones can find support groups (largely online, though some meet in person) through which you can form meaningful relationships with other people and families battling mesothelioma, and with whom you can exchange information and advice.
For those who need help finding resources to reach out to, an oncology or hospital social worker can help you find programs and groups on both local and national levels.
4. Get Yourself Ready for Treatment
There are many things you can do proactively to give yourself the biggest possible leg up when it comes to your mesothelioma treatment.
- Have a comfortable, accessible place to recover. Make sure that you have a quiet, clean, and comfortable atmosphere to come home to during your treatments.
- Maintain nutrition. Now more than ever, diet is key. Make sure to get plenty of protein and eat lots of fruits and vegetables.
- Prioritize good sleep. The body needs sleep to heal and to endure treatment. Make sure to get as much sleep as possible both before and during treatment.
- Exercise as much as possible. While you may be limited in your ability to exercise by your condition and the effects of treatment, try to get as much activity as you can.
- Use knowledge of common treatment side effects to plan ahead. Some of the treatments for mesothelioma have common side effects. For example, chemotherapy often causes nausea and food aversion, so a source of calories that’s easier for someone in that state to consume (such as Ensure or other meal replacement drinks) should be kept on-hand in advance.
5. Learn About Your Financial and Legal Options
If you have mesothelioma, there’s a very high chance that it was caused by exposure to asbestos of some kind. Mesothelioma forms when inhaled asbestos fibers lodge in the lining of the lungs, abdomen, or (much more rarely) heart, and cancer.
Treatment for mesothelioma, like most cancers, can be costly. It’s essential to contact your health insurance company to see what your individual health insurance plan covers and what it may not cover (and will therefore be up to you and your family to pay out-of-pocket).
However, additional financial aid may be found through the pursuit of legal avenues. An experienced, knowledgeable mesothelioma attorney may be able to get you compensation for your asbestos exposure that may cover the cost of your medical care (and other expenses related to your mesothelioma). Make sure to choose a reputable mesothelioma lawyer or law firm with relevant experience and to read up on similar mesothelioma cases to get a good sense of what others in your position have been able to sue for.