Life After Mesothelioma Cancer: A Survivor Shares Her Story

Stories from Survivors
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When I was first told I had peritoneal mesothelioma, I pictured the day when I would be cancer free.

I’m not sure if other mesothelioma patients look ahead that far, but I did. It gave me something to look forward to. According to recent studies, the average mesothelioma life expectancy is 12 to 21 months. You read that correctly, and here I am, 14 years later.

It’s very rare for a peritoneal mesothelioma patient to live this long. Therefore, getting to cancer remission for me was a goal I was well intending to reach. And I did!

Mesothelioma Journey: From Diagnosis to Today

As I go down memory lane, this saying comes to mind: “You have to go through to get to!” This is something I told myself every day.

Cancer patients have to go through so much in their treatment, from chemotherapy to radiation, surgeries, medication side effects, you name it. So, the logic behind my thinking was, OK, I’ll go through this to get to remission

Having peritoneal mesothelioma was a journey for me. These were uncharted waters I was treading. For that reason, once I found a specialist I made sure I picked his brain about the smoldering questions and concerns I had. I also followed his instructions and advice to the nth degree. 

This is vital for all mesothelioma patients: Don’t be afraid to ask questions and let your concerns be heard. When it comes to asking questions about your health, there is no such thing as a dumb question. Make sure you are knowledgeable about your plan of care and things to look out for.

As part of my treatment, I had surgery with hyperthermic intraperitoneal chemotherapy, or HIPEC. Studies show that HIPEC drastically improves life expectancy in about half of the peritoneal mesothelioma patients who have the procedure. It definitely worked in my favor and was a success!

I recall going to my post-op visit and the doctor saying how well I did and that the cancer was gone. Year five came, and my doctor told me I was a walking miracle due to the fact that most mesothelioma patients don’t make it to year five. 

Cancer’s Long-Term Effects

Fourteen years later, I am still cancer-free. But because I had peritoneal mesothelioma, I am very conscious about my health. I have also discovered some long-term effects of being a cancer survivor.

Please note that these effects can differ from person to person.

  • Low Platelet Count. This was actually one of the first indications that something was going on. Low platelet count can cause fatigue, easy bruising and bleeding from the gums or nose. I still have low platelet counts, but it’s being monitored by my hematologist.
  • Low Hemoglobin. When you have low hemoglobin it affects your red blood cells, which store oxygen and iron and circulate them through your body. Low hemoglobin can be a sign of a low platelet count and can lead to anemia. This can cause fatigue, nausea and even headaches.
  • High Creatinine Level. This has to do with kidney function. One of the possible risks of the HIPEC surgery was kidney damage. Although my creatinine level is slightly elevated, it’s pretty much stabilized at this point.
  • Stomach Pains. These can be sharp pains that make your stomach feel like it’s in a knot. When this first happened, I was really afraid. I called my doctor and was checked out immediately. Once they found out nothing was wrong, the pain was attributed to scar tissue. Little did I know that scar tissue could cause pain, but it can. I usually take either Tylenol or ibuprofen if it is prolonged.
  • Anxiety. This actually goes hand in hand with PTSD, which I discussed in a recent article.

Even though I am more than a decade into remission, I continue to monitor my health. I go to my primary care doctor regularly and have created a great relationship with her. I also have checkups with the hematologist/oncologist consistently to get routine blood work as well as ultrasounds and CT scans. This is to ensure my blood levels are monitored and to make sure the cancer is still gone. 

Being able to cultivate a great relationship with your doctors matters so much, even when you’re in remission. It’s important for you to feel comfortable talking with your physicians about your health. It’s important to remember that we are our first advocates! 

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