I have TGCT-TS

I have Tenosynovial giant cell tumor (TGCT) of the tendon sheath (TS) also called pigmented villondular synovitis (PVNS) and I am guessing unless you have this disease I am the only person you know who has it.  This is on the rare diseases list.  The medical description of this disease is as follows . . .

"TGCT is a type of non-malignant tumor occurring in or around a joint that can reduce function and cause damage to neighboring tissues. One type of TGCT is called localized; this type is often cured with one surgery. After it is removed, localized TGCT may come back, or recur, about 15% of the time. The more challenging—and less common—type of TGCT is called diffuse;  this type can be harder to treat and is more likely to recur. After it is removed, diffuse TGCT may grow back in 20% to 50% of people. If TGCT recurs, it can result in multiple surgeries and damage to the affected joints over time."

The good news is that I have localized TGCT.  The bad news is that even though my tumor is confined to one area, that area is hard to get to.  My tumor is in my left ankle and is wrapped around my tendon like a snake.  You can't reach it in surgery.

How do I know?  We tried.  Last fall when we finally diagnosed the pain and swelling in my ankle, I had surgery to remove the tumor.  Once he was inside my ankle the doctor was disappointed to discover just how my tumor was positioned.  He hoped he got it all . . . but he didn't.  MRIs show that in just 10 months my tumor grew back to its original size.  We aren't even a year out of surgery and I already have pain walking.  Its a bummer.

Technically this tumor is not cancer as it will not kill me.  My localized tumor will not spread. (thanks be to God because lots of folks have it way worse)  But my tumor is VERY aggressive and it grows VERY fast.  The bad news is that at this point there is no cure for TGCT.  Its a lifetime of surgeries or medication.  And the medication is nasty . . . chemo.

The other option for me, because my tumor is localized is amputation.  That is something I am seriously considering.  If I amputate, then I would be rid of this tumor.  Imagine what you would choose . . . chemo for life (address growth but won't cure) or the amputation (gets the tumor out for good).  I know which way I am headed.

This blog is a place for me to reflect on my experience with this cancer like illness.  The treatment at this point is to give chemo a try.  We will see how it goes.  Thanks for your love and support.

- Heather