Tom Simanovich

First post: May 15, 2016 Latest post: Nov 7, 2018
Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most.  I was diagnosed with a form of sarcoma cancer, most similar to Ewing's Sarcoma in May 2016 after I suddenly had back pain at work that got worse over time and I ended up driving to a hospital in writhing pain.  I spent 14 days in a hospital due to pain, from a tumor exploding next to my kidney.  

I started seeing a kidney doctor who had made mention that he had never seen anything like what happened to me happen.  He's been a surgeon for like 19 years, so he's not a rookie.  We thought things were going well, but their was always too much blood clots in the way to be able to look for any new growths.  One day I just got hit with the same pain again.  We scheduled a surgery for March of 2016.  The surgery was successfull, it took a long time, and they almost had to remove a few extra body parts as part of the surgery, but were able to save them.  The tumor was sent to Iowa labs for testing, and later to Mayo Clinic in Minnesota.

I was given a referral to Mayo Clinic and had a meeting in May 2016.   It was in May 2016, I learned that the type of cancer I had was technically an unclassified Sarcoma.  It had the most similar characteristics to Ewings Sarcoma, and that's how my treatment plan was laid out.

After 4 rounds of chemo, I went back to Mayo for progress, and discuss next steps, where they determined they wanted to do 29 rounds of radiation. 

I completed radiation in December of 2016, and Chemotherapy in January of 2017.

Things were going well, and then a CT scan showed potential spots on my lung.  After doing a lung biopsy, my lung collapsed.  They didn't find any cancerous material and scheduled another CT Scan for 6 weeks from my previous scan.  During that time I ended up needing to have Emergency Surgery to have my gall bladder removed.  We though it was a standard gall bladder removal, but they found tumors during the surgery, which cause my gall bladder to have the associated pain it presented.  

Referred back up to Mayo Clinic.  We do a PET Scan, and find lots of tumors, that had spread.  This was October 19th, 2017.

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