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! Two of my children are grown and out of college now, I have teenaged twin boys, and we will have our first grandchild soon! I love to sew, garden, read and most of all I love being with my family.
It is my heartfelt desire to help the Sarcoma Foundation of America spread awareness about GIST Sarcoma & other sarcomas. This is very important to me because I was very ill and misdiagnosed for five 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 GIST Sarcoma awareness 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. It is said that most physicians will never even see a GIST tumor or patient in their entire career. 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. I still need follow-up care–CT scans every six months to look for new tumors, blood work, ultrasounds for my thyroid cancer—so I need my doctors and I need to have faith in them. I chose to not take Gleevec. I had differing opinions from three GIST specialists on whether or not I should be on Gleevec for GIST Sarcoma. My tumor had a very low mitotic rate, but it was located in my small intestine and was ulcerated so, one oncologist thought I should be on Gleevec. My strategy is if another tumor shows up, I will have surgery, and then I will go on Gleevec. As for my thyroid cancer, it is a rare, aggressive cell form that is resistant to radioactive iodine therapy, so I’m monitored with ultrasounds and blood work.
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 GIST awareness 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.
If you or a loved one has been impacted by sarcoma cancer, we encourage you to share your story. Sharing your story can be such an inspiration to others who are dealing with sarcoma in their own life and remind us all of the urgency to find better treatments in order to make an impact on the devastation that sarcoma cancer brings. Let your experiences help others become involved with raising awareness!