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DiscussionDiagnosed with sarcoma? Let's share
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Replies to "In December 2016, I was diagnosed with low grade metastatic uterine leiomyosarcoma. I had some troubling..."
I'm not sure that my response is relevant but I offer it anyway because I too was diagnosed and treated for a softball sized tumor diagnosed as third stage soft tissue leiomyosarcoma. My tumor was discovered in 2007 during a routine endoscopy. The gastroenterologist I followed up with in Chandler, AZ diagnosed the tumor as benign.
My internist wanted me to have the tumor removed. When I had gall bladder problems while visiting friends in NY in March, 2008 I scheduled surgery in NY to remove my gall bladder and tumor. During the surgery it was determinded that the tumor was not benign and in order to remove it from my retroperitoneum my surgeon had to remove one adrenal gland, my spleen, part of my pancreas as well as the tumor/leiomyosarcoma.
Recovery was slow--3 months on a feeding tube. I was referred to a radiation oncolgist in NY who suggested radiation. I wanted to get home as soon as possible and so I planned to follow up on radiation at the Mayo Clinic in Scottsdale, AZ. Monitoring my condition rather than radiation was the course recommended by Mayo radiation oncologist. I have had CT scans every 3 months for a year or so, then every 6 months and for the past several years annually. I have been very fortunate that the leiomyosarcoma has not recurred.
Later in 2008 my gall bladder (which was not removed during my first surgery) needed to be removed.
In November 2010, following an endoscopic exam, I was diagnosed with early stage gastric cancer and had a total gastrectomy following the diagnosis. Recovery from this surgery was easier than recovery from tumor removing surgery.
I will be 80 in October and just got back from Universal Studios in CA where I went with my young grandsons and family following a 10 day stay in Cooperstown, NY.
What I've learned from all this is to stay away from endoscopies (only joking). I wish you well.
Hi Carolyn @cvandyke, welcome to Connect. I'd like to introduce you to @diane060 who also has metastatic endometrial (uterine) carcinosarcoma. While it would appear that your diagnoses differ, I thought you'd like to meet each other.