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Diagnosed with sarcoma? Let's share

Sarcoma | Last Active: 6 days ago | Replies (840)

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@cvandyke

In December 2016, I was diagnosed with low grade metastatic uterine leiomyosarcoma. I had some troubling symptoms in December 2014. A CT scan indicated a very large uterine tumor, and I was scheduled for a radical hysterectomy. I was told the tumor was the size of a softball. The pathology report came back with a rare diagnosis of a Smooth Muscle Tumor of Uncertain Malignant Potential (STUMP), which means that the tumor wasn't benign, but it didn't qualify as being considered malignant either. The pathology report was sent to Mayo Clinic and two pathologists confirmed the diagnosis. My surgical oncologist, who is very well respected both nationally and internationally, indicated that he had never had a patient with this diagnosis. The protocol indicated no further treatment other than to monitor me through regular CT scans. My first six month scan indicated a tumor in one of my kidneys. I was referred to an urology oncologist for surgery. The pathology report indicated I had Chromophobe renal cell cancer, which also is somewhat rare. Once again, Mayo Clinic confirmed the pathology report. Surgery was the only treatment with CT follow-ups. In March 2016, a CT scan of my lungs indicated a small nodule. Six months later, there were a couple more nodules and by December, a CT scan showed 4 nodules. At that point, it was felt that one nodule was big enough to biopsy. The diagnosis was a low grade metastatic leiomyosarcoma as the biopsied tissue was uterine based and tested positive for estrogen. Three doctors from Mayo confirmed the diagnosis. My surgeon referred me to a medical oncologist who is head of the sarcoma program at a major Chicago hospital, who explained that the latest diagnosis changes my STUMP diagnosis to a leiomyosarcoma. Because the lesions are estrogen dependent, I have been prescribed Anastrozole (generic for Arimidex), which is a drug taken by many breast cancer patients. The drug blocks the formation of estrogen in your body. The lesions need estrogen and without it, they can't grow. After two months on the medication, a CT scan indicated one nodule was gone and the three others had shrunk in size. My next scan is in a couple of weeks and I'm hoping for more good results.

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Replies to "In December 2016, I was diagnosed with low grade metastatic uterine leiomyosarcoma. I had some troubling..."

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.

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.