Years of Misdiagnosis Compels Me to Advocate for Rare Disease Patients & Awareness

By Kimberly, United States, January 2, 2015

Hello! My name is Kimberly and I was diagnosed with GIST Sarcoma (gastrointestinal stromal tumor) in December of 2012 and Papillary Thyroid Carcinoma with a rare, columnar cell variant four months later in April 2013.

I am a mother of four, a wife and I have a lot to live for! Our family is no stranger to misdiagnosis. I have teenaged twin sons who also have health conditions. One has a rare type of cavernous malformation or cavernoma also known as a brain angioma in the pons of his brainstem and my other son has Crohn's Disease. Both of my sons were also misdiagnosed. It took 9 years to receive a correct diagnosis for my son who has the brain angioma.

It is my heartfelt desire to spread awareness about GIST Sarcoma, other sarcomas, rare diseases and advocate for compassionate care for patients. This is very important to me because I was very ill and misdiagnosed for years. I believe there are other misdiagnosed GIST patients out there as well. If we can help just one person or all, then our time here writing, sharing and spreading awareness is well-spent.

I believe that awareness for rare cancers and other conditions begins with educating those within the medical community. From emergency room physicians, physician’s assistants, nurses, to internal medicine specialists/family physicians and even gastroenterologists, hematologists and beyond. I was misdiagnosed by all of the above for five, long years. I was (mis)diagnosed with arteriovenous malformations (AVM’s) that no one could locate in my intestines or told my severe anemia was a gynecological issue…no one considered a GIST tumor. I had approximately seven or more endoscopies, colonoscopies, bleeding scans, angiogram, blood transfusions & iv infusions of iron. I had many hospitalizations and ICU stays due to gastrointestinal hemorrhages from my GIST tumor. My tumor located in my small intestine, was highly vascular & ulcerated. It was almost 4 cm in size but it was a little monster. It nearly took my life several times. A double-balloon enteroscopy was what finally located my GIST tumor on December 13, 2012. When I received my two cancer diagnoses I was very frightened but relieved to have answers. But, the irony of having been under the care of hematologists for five years, and receiving IV therapy in chemo units, surrounded by cancer patients, and I had two undiagnosed cancers the entire time that were overlooked, was just heartbreaking and so disappointing. I felt very robbed of time because I had been severely anemic for a long time; I was frequently nauseated, and I ached deep in my bones. I had no energy and never felt well. I have had to dig deep to overcome disappointment and mistrust in the medical community– and to summon back my faith.

My personal experience with these cancers and my long journey of misdiagnoses compels me to advocate for compassionate care and patient rights. Had there been more awareness and treatments available for my cancers this could have been prevented. Doctors became frustrated and complacent with my case and I was misdiagnosed with several conditions but the entire time I had cancer that was missed. To add insult to injury after all of this, my care was terminated by Mayo Clinic Jacksonville and they refused to treat me for my thyroid cancer or continue follow-up care for my sarcoma even after they had misdiagnosed both cancers. I felt punished for the provider’s mistakes and I was sacrificed to their purpose of protecting their bottom line so they dumped me. My life had no value and I was thrown away like garbage. I feel that Mayo Clinic and many medical providers have lost their compassion for patients and I learned I was not the only patient with this experience. We must restore compassion, good ethics and insist our patient rights be honored. And this begins with awareness and changing legislation.

I’m doing really well now. I feel good, love my life and have so much I want to do and look forward to. What I went through was a heartbreaking, terrifying, costly and frustrating experience that went on far too long. With more awareness and education, we can help prevent this from happening to others. This experience has made me stronger and I am grateful for every single day in my life. But more than anything, it inspires me to try to help raise awareness. I don’t want anyone else to ever have to go through this. If I need to stand and shout from the rooftops, in the middle of the street or anywhere, then I will do it for you, your loved one or anyone. I am here to help spread awareness and I am here for anyone who needs support or someone to talk with.

My heartfelt best to everyone.

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