Navigating My Own Path on My Mesothelioma Journey

Stories from Survivors

Finding your path after being diagnosed with a rare disease such as peritoneal mesothelioma is hard. Thanks to technological advances in the medical field, better treatment options have led to improvements in a patient’s quality of life. 

Back in 2007, I wasn’t only faced with a mesothelioma diagnosis, but with an obstacle in front of me that I wasn’t sure how I was going to tackle. So many unknown factors were in my way. 

For starters, I had never heard of mesothelioma. Second, I couldn’t find the information that would lead me to a treatment plan. And last but not least, the first oncologist I was referred to didn’t offer me any options for care. 

So, what’s a girl to do? I figured I had two options: sit there and do nothing or discover my own path to the answers I was looking for. Do you know what I did? I decided to do whatever needed to be done to get to the right mesothelioma specialist

The Choice Is Yours

I’m a millennial, and growing up if you didn’t know the answers you would go to the internet to find them. In 2007, neither Google nor Ask Jeeves were giving me what I was looking for. What were they giving, you may ask? Everything I researched online said that the prognosis was poor and very few doctors around the country specialized in this type of cancer. 

Something that really stood out to me was the typical patient demographic, which didn’t look like me, a young woman of color with cancer caused by asbestos. I hadn’t even started my working career yet. 

The day I decided I wasn’t going to sit back was at the last appointment I had with my first oncologist. It was scary walking into the unknown, but I knew there was more to my life than this devastating diagnosis. 

If a physician doesn’t offer you any options for your plan of care, seek a second opinion. To be honest, it felt like the doctor had no regard for my future. He didn’t try, and thought I wouldn’t try either. But what he didn’t know is that giving up wasn’t in my DNA!

Finding My Path

Finding your own path is not easy. You’re basically creating something from scratch, doing your own research and fact-finding. My family rallied around me and researched and contacted cancer treatment centers across the country. 

At first, our efforts looked a bit bleak. Either the centers weren’t equipped with the right specialists or they needed more time and information about my case. 

Have you ever prayed for something hard, and you just knew it was going to go the way you imagined it? But all along you were looking in the wrong direction? The mesothelioma specialist I had been looking for was right in my backyard. My mom mentioned my diagnosis to some of her co-workers and they immediately told her who I needed to see. 

During my first appointment, I knew Dr. Edward Levine was God sent. He was confident in a treatment plan, confident that I was a great candidate and confident that it would afford me a better quality of life. For the first time since I had been diagnosed, I found out what peritoneal mesothelioma was, how I got it and the different aspects of it.  

Here’s the thing. At your initial appointment you should be able to figure out if your doctor is confident in your treatment options. Always trust your gut feelings, and when you ask those questions listen to the answers and follow up. 

My Journey Continues

It’s been 16 years since I received treatment for peritoneal mesothelioma in the form of HIPEC surgery. Then it seemed as if the odds were against me. I didn’t let the diagnosis define me nor did I let up or take no for an answer. I even reunited with Dr. Levine for a HIPEC webinar so we could share what we experienced with other mesothelioma patients.

I say that my journey continues because the world of health care is not as simple for everyone. It’s important to find your voice and learn how to navigate the sometimes murky waters. 

Society is fighting for health equity, but until we reach that pivotal moment, if you have to navigate your own path with a rare cancer diagnosis, then do it!

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