Diagnosed with sarcoma? Let's share

Welcome to Connect, @ld57feast. Like @capricorne1 said, you are very strong. And fortunate to be surrounded by people who come to visit. I thought you might also be interested in this discussion in the Cancer group where people living with stage 4 cancer talk about all sorts of things openly and honestly - humor included. Everyone has a different cancer. Metastatic is the commonality.

- Talking Frankly about Living with Advanced Cancer https://connect.mayoclinic.org/discussion/talking-frankly-about-living-with-advanced-cancer/

@ld57feast, do you live on your own or with family?

Hello,
I was diagnosed with low-grade myofibroblastic sarcoma on my tongue in July 2015. Other than trying an occasional cigarette or chew in my younger days, I wouldn't be considered a smoker of any degree. A considerable portion ( I don't know the exact percentage but to me, it was/is considerable amount) of my tongue was removed on July 30, 2015. My wife, a dental hygienist, tells me quite often that I am a lucky guy. It was removed by surgery, no chemo, no radiation. She has made me aware of the "could have" scenarios. Spots were also found on my lungs and I had lung surgery in August, 2015. The spots were non-cancerous. In the meantime, I had started my new job of high school principal on August 1, 2015 after teaching Spanish for almost 20 years. I spent two years as principal and this fall I'm going back to teaching Spanish.

My followup visits with my surgeon and MRI's have all been good. My physical state is fine. I still struggle with my speech. People tell me they can't notice it but I can. They are too nice to say anything, in my opinion.

It's been a rough two years. I struggle daily with my speech and how I sound versus what people tell me they hear. Not sure if this what this group is for but there it is. Thanks for giving me an opportunity to share my story.

Hi my name is Leslie. I was diagnosed with stage 4 chrondo Sarcoma. Chemo and radiation have no effect. First I had my RT femur removed and was stage 3 than in 4 months it metatsised into my lungs. I had tumor removal on my left lung, at which I was stage four and they said no more surgeries and I had 6-8 months. I traveled and now I am chair bound. I am on liquid oxygen and concentrated. Running between 16-24 lbs. My spirits are high and I have made it to14 months. Still eating and having visitors. God Bless each day.

You are very stron Leslie
Enjoyed your friends they’re very precious.
Share with them.
Take Care.
Carpe Diem
God Bless.

@sarcomasurvivor

I am glad that you shared your story with Connect! How wonderful that you went to Mayo and received a refined diagnosis. I'm also glad to hear that you are following up on a regular basis. I find it difficult to believe when a doctor doesn't want to follow up with a cancer survivor.

Teresa

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.

Hello Deb, I hope that this note finds you in great health! My wife and I were at Mayo on Monday for my first full year annual check-up and I am delighted to report that I ma totally cancer free, the reconstruction sight looks pristine and there has been no shrinkage at the sight as well. I am exercising and running and having the time of my life with our grandchildren. I look forward to hear of your progress and wish you well. Your fellow survivor and thriver, Jeff