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Post-Op and Recovery Update

Tomorrow will be one month since the removal of the GIST (Gastro-intestinal stromal tumor) in the lining of my stomach.  Quite a few people have been reaching out to see how I've been feeling and for an update on what's next.

First off, the surgery went well.  My surgeon only had to make one incision in the mid-line of my abdomen, because as he started to cut, the tumor was visible immediately.  He said I was a "surgeons dream" since there wasn't much to cut through!  My pain was controlled well post-op and I did not have near as much nausea from the pain meds as I did from the lung biopsy.  They made sure to stay on top of giving me anti-nausea meds and even put a scopolamine patch behind my ear pre-op.  I stayed in the hospital for two nights and then was able to go home.  Recovery went well with no complications. 

Over the last month, I've had a lot of emotional ups and downs.  Waiting on the results from the pathology on the tumor was difficult.  Once my husband and I received them, we had to remain as postive as we could and optimistic.  We went to meet with the doctor around 2 weeks post-op to go over the results and it was not the news we were hoping for.  We were informed that this tumor was 7 cm in size and was rapidly growing.  It had spread to two of the six lymph nodes near by, making it a stage IV cancerous tumor.  Anytime you hear stage IV cancer, it can be pretty scary.  They then said that the type of GIST I had was pretty rare.  GIST tumor's are rare to begin with only affecting 3,000 - 4,000 people a year.  The sub-type I had is called an SDH deficient GIST, which only accounts for 5-7% of GIST's.  At this time they told me that from what they know about this sub-type, there is a 50/50 chance it could come back and there is no current medication that can help prevent recurrence - hence the emotional ups and downs.  They told us they wanted to run a couple more tests on it and would let us know further information ASAP.

The good news:  my surgeon was able to remove the entire tumor and the lymph nodes affected.  He had to cut a portion of my stomach out about 1/2 the size of an iPhone Plus to remove it all.  My oncologist called with an update yesterday on the further testing of the tumor.  He said it was negative for two genes that would have been more concerning (DOG1 and KIT).  Again, my type was very rare so they do not have a lot of studies on it yet.  My oncologist said from one study he read, 63 people had this type of tumor removed and only 3 had a recurrence.  He feels pretty optimistic about it all.  So now we just continue care with frequent CT scans for surveillance and pray like crazy that it NEVER comes back.

My first CT scan is September 10th and while the waiting is tough, we are going to remain postive and optimistic!  I am so thankful for all the people who have been here for me through it all. I am blessed!  


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