7 Things to Do After a Peritoneal Mesothelioma Diagnosis

Cancer & Caregiving

I’ve heard so many people say that after they have been diagnosed with peritoneal mesothelioma, or any cancer for that matter, they don’t know what to do.

I understand, because I was there 15 years ago when the doctor told me I had peritoneal mesothelioma and only 18 months to live! A big whammy, right?

I’m sure it’s not easy for medical professionals to tell patients they have cancer. But sometimes it seems as if you’re left hanging to absorb the news.

I created this list of seven things you can do after you have been diagnosed with peritoneal mesothelioma. Please note that I am coming from a place of transparency and experience. 

1. First Things First: Learn About the Disease

Peritoneal mesothelioma is a type of cancer that affects the lining of your abdomen and is caused by asbestos exposure. This type of cancer can develop for years before it’s detected. 

Peritoneal mesothelioma is generally not a cancer that you hear about every day, so don’t feel bad if you don’t know what it is. I didn’t know, either. Very little information was available 15 years ago when I was diagnosed. Being informed is vital and will play a major role in your journey. 

One place to start familiarizing yourself with this disease is The Mesothelioma Center, which has easy-to-read and understand patient resources and access to the latest peritoneal webinar, where I partnered with registered nurse Sean Marchese to talk about peritoneal mesothelioma in depth. We also answered some frequently asked questions.

2. Don’t Be Afraid to Ask Questions

When you’re newly diagnosed with peritoneal mesothelioma, every question is a good question. Your health care team is there to help you understand what’s going on with your body, so remember to write your questions down and ask them during your appointment. 

If you forget to ask something, there is usually an online portal where you can send your doctor a message or you can reach out to their staff. 

3. Get a Second Opinion

Why are some people afraid to get a second opinion for mesothelioma? Well, sometimes you might feel as if the doctor who diagnosed you initially will not like it. But listen, who cares? Remember that it’s your body, and you’re in control of what happens to it. You’re the patient, with rights, and you have a say in your mesothelioma treatment plan. Don’t feel bad at all – be excited to get a second opinion. Maybe even a third! 

When I was first diagnosed it wasn’t by an oncologist, although he referred me to one. After a couple of visits with this doctor, it was clear he knew he wouldn’t be able to help me. So, I sought out another oncologist. I pulled my family together and we were determined to find a specialist who was familiar with mesothelioma. 

And that’s exactly what we did. Well, my mom is the one who actually found the mesothelioma specialist. My experience with this new doctor was like night and day! Once I found the peritoneal mesothelioma specialist, he gave me the hope I needed because he knew just what to do and what treatment was best for me. 

4. Seek Emotional and Social Support

Nowadays, support groups are pretty common, and I would highly recommend The Mesothelioma Center Facebook support group. The group is private, and just being able to talk to others who are going through a similar situation can change your perception. 

Joining a support group will allow you to connect with other patients, survivors such as myself, and caregivers. Knowing that you have support is vital for your healing and strengthening process. 

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5. Learn About Your Financial and Legal Options

The health care system is something that can be hard to navigate, especially if you have a disease such as peritoneal mesothelioma. It’s important to contact your health insurance company to see what your plan covers and what to expect to pay out-of-pocket, if anything. 

A mesothelioma attorney may be able to get compensation for you that can help cover expenses related to your mesothelioma. Every case is different, and there are a lot of variables that come into play with a case, but mesothelioma law firms have the experience to help. 

6. Keep the Faith

I don’t want to sound like a broken record, but grasping ahold of my faith and hope is what kept me going. No matter what bad news I heard or how bad I felt, I had a glimmer of hope that allowed me to keep putting one foot in front of the other even when I didn’t feel like it. 

I also found emotional support within my church family. They listened to me, prayed with me and laughed with me.

7. Be Mindful of Stress and Anxiety

Last, but certainly not least, take a deep breath and be aware of your thoughts, emotions and feelings. It’s so important for your mental health. Actually taking the time to stop when everything around us is chaotic helps us become “present” in the moment. This is one thing I wish I had done earlier on in my diagnosis, because it helps keep anxiety under control.

Hopefully these tips can help guide you along the way if you or a loved one are facing a peritoneal mesothelioma diagnosis. So many patients feel as if they don’t know what to do, when to do it, or where to go when they’ve been told they have cancer.

Don’t be afraid to reach out to myself or one of our Patient Advocates here at The Mesothelioma Center. 

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