Robin VanHyning Robin's Support Team Page

First post: Jul 16, 2017 Latest post: Oct 18, 2017
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I was diagnosed on June 5, 2017 with a rare cancer called medullary thyroid carcinoma (MTC).  There is no cure or treatment for this cancer.  The one thing you can do is have a really good surgeon remove as much of it as he can to buy you some more time.  It is a slow growing cancer and most people have a few years to continue enjoying life. 

For those who just want updates as I post them. just follow the instructions to subscribe and we will keep you updated. For those who want more detail, read on.  

The details:

There are two types of cells in the thyroid.  The follicular cells secrete the usual thyroid hormones and the parafollicular cells (also called C-cells) that manage the calcium in our bodies.  The C-cells make up about 2-4% of the thyroid.   Most thyroid cancer occurs in the follicular cells and respond well to treatment with a high success rate., But about 1-2% of the thyroid cancers are in the C-cells and this type is called MTC.  Within MTC there are four sub-types.  Two are genetic based and two are not.  I am happy to not have the genetic type because even though it has a better survival rate, it means your children and siblings will most likely develop MTC at some point.  

I have been diagnosed with "sporadic" MTC type which is not the worst, but is considered "aggressive".  Aggressive does not mean fast because this is a slow moving cancer, but it does mean persistent and often metastasized by the time it is found.  97% of people with sporadic MTC will die of this cancer because it has usually metastasized by the time it is discovered, but because of it's slow nature, many can live another 5-15 years - some even longer.

The best chance for extending the survival length is to have a highly experienced thyroid surgeon who has treated many MTC cases.   There are roughly 568 cases diagnosed in the world each year so finding one surgeon who has worked with lots of this cancer can be challenging.  I feel very fortunate to have been accepted as a patient by the nation's leading thyroid and MTC cancer surgeon (and most say the best in the world).  Dr. Gary Clayman with the Clayman Thyroid Cancer Center in Tampa Bay, FL will be doing my surgery on 7/19.  Removal of all cancerous tissue (or as much as possible) in this first surgery is critical to the length of my survival.  I will have my thyroid removed and all lymph nodes in my neck at a minimum.  The further extent of the surgery will depend on what my surgeon finds once he is in there. This is a very sneaky cancer and by the time it is discovered is it almost always moved to the lymph nodes. My hope is that the extent of progression is limited to the neck lymph nodes.  It next moves to the liver, bones, and lungs.  Radiation does not work on this cancer and the only chemo options are two new drugs that just came out of trials.  They do not stop the cancer, but they have been found to slow it by a few months.  Unfortunately, these two drugs are so toxic that only 20% of the folks who try them can stay on them due to the side effects.  So they are not generally used unless the cancer is really advancing at a faster rate. There is one new drug starting into trials in May 2017.  

I am doing well both physically and emotionally at this point.  Curt and I are at a good point in our lives to be able to have the time and resources necessary to deal with a challenging health care issue.  We have our spiritual faith and we have many wonderfully supportive friends.  I actually see this as a gift of sorts....we are all going to die.  Some of us receive bad news that gives us a matter of months to live, others are lost overnight in a tragedy.  Most of us spend our lives wasting precious opportunities and moments because we think we have decades more of living to do.  If this cancer takes me, I will at least have had the time to fully live each and every moment between now and then.  I will just live the Cliff Notes version of life and skip all the trivial stuff.   Thank you for your ongoing support for me and my family.  It means more than you can imagine.

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