Starting over after cancer misdiagnosis

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Carolinemisdiagnosis.jpgBy Caroline Kimrey

Caroline Kimrey is a wife and mom to a young son. After a few tumors were discovered on a CT scan, she had major surgery on Feb. 23, 2012. Pathologists needed almost a week to diagnose her cancer, even taking the tissue to an "unusual tumors" conference.

Finally, when she was diagnosed with peritoneal mesothelioma, she traveled to MD Anderson, prepared for (almost) anything. What she was not prepared for was to learn that she had been misdiagnosed.

She continues to be an MD Anderson patient, awaiting treatment for myxiod sarcoma. She chooses to blog at for others who might be going through a similar experience.

One week after my debulking, my oncologist was finally able to tell me what kind of cancer I had. Unfortunately, that was all he could tell me. 

All of the doctors who saw me were timid around me, knowing they would be unable to answer any questions I might have about this rare cancer. My oncologist relief was palpable when I told him we had decided to seek treatment at MD Anderson.  

Care unlike any other
My experience at MD Anderson was unlike any other. The waiting rooms were packed, but they certainly were not typical waiting rooms.  

I watched someone in a very deep conversation with a couple who were evidently there for the first time. Initially, I thought she was a social worker, but as I look back I wonder if she was actually a former patient. Regardless, it took less than a minute to figure out that she cared.  

Much to my husband's delight, there were unfinished jigsaw puzzles all over the waiting room.  He was finally able to take his mind off of this great weight, even if for just a short time.  

Dr. Anne Tsao was the first person who made us feel like mesothelioma wasn't the end of the world.  

Everyone, and I do mean everyone, tip-toed around us after that diagnosis. People close to me begged me not to look it up online, so I didn't.

This great oppressive thing weighed down everyone around me, and Dr. Tsao was the first one to say, "This is a known quantity. We know exactly how to treat it."

She gave us the treatment regimen and sent us home to our son. It was such a relief to be able to receive treatments in my hometown, while at the same time knowing the best doctors in the world were overseeing it.

When I returned home, my local oncologist scheduled the surgery to have my port placed, plus a few more appointments (such as having a CT scan) that were necessary before beginning treatment.

Starting over
One week before my treatment was scheduled to begin, I received a phone call from Dr. Tsao.  

After checking up on me, she dropped the bomb. "You have been misdiagnosed. You actually have sarcoma."

The thing about cancer is that your world falls apart. But in time, the pieces slowly begin to fit back together.  

I had finally found a support group (thanks to Dr. Tsao). I had a plan. I had learned everything I possibly could about mesothelioma, and was ready to start fighting. But a new diagnosis?  

A new diagnosis placed me firmly back at square one. I'm not ashamed to say that I cried. Everyone I spoke to said this was a much better diagnosis, but it was still an unknown to me. Where do I go from here? I am still somewhat shaken up by this abrupt change.   

MD Anderson is one of the few places in the world that could have correctly diagnosed my sarcoma.  

I feel no animosity toward the hospital that made the initial diagnosis, but my family might have been saved a lot of heartache if I had never been misdiagnosed.  

I cannot even fathom the pain my husband must have felt when he considered that he might be widowed at 30, left to raise our son alone.

I'm glad I chose MD Anderson to treat my cancer and give me the best shot at beating it. If I hadn't, I would be receiving the wrong kind of treatment today. For this, I am thankful.

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