“They” thought it wasn’t possible or at least it was highly unlikely.  I recently got home from my ten-year bone cancer scans and I remain cancer-free!  Okay, no one has ever said that, they say “no evidence of disease,” but I’ll take it.  And although my surgeon told me at the end of the appointment that he would see me in a year (as he has every year recently, before it was much more frequent), his after-visit summary posted online said so much more.  More on that a little later.

My bone cancer was a very rare and very aggressive sarcoma and the prognosis was not favorable.  You can find all the details in earlier blog posts.  So, each year that passed without a recurrence was both wonderful and remarkable.  Every visit to my surgeon for monitoring scans caused so much stress and anxiety and I often wondered how many years follow-up was necessary and responsible.  After about seven years, when I would ask my surgeon at each appointment (I suppose I was hoping the answer might someday change), he would respond that I had good insurance, so why not?  I would think “Why not?  Because each and every time I have to visit with you my PTSD kicks in with full force.”  I discussed this topic many times with my counselor.  He would always say I would know when/if the time was right to stop these appointments.  My intuition would let me know.  My intuition and I are not on as good terms as I would like.  I spent the first many years of my life living completely in my left brain.  There was no room for “feelings” and especially no room for listening to them if I had them.  Heading into each appointment I would pray that if I was to determine I was followed long enough I would be given some sort of confirmation.  Let me clarify something here.  I was not trying to stop monitoring my cancer status one second before I responsibly should, but I also didn’t want to keep putting myself through this solely out of fear.  So, I asked again this visit and his response was “why, do YOU want to stop monitoring this because it IS always your call, but your insurance will cover it?”  That may sound like a benign response, but my surgeon (in my opinion), although brilliant in the operating room, is very passive aggressive in person.  I’ve heard people refer to it (in relation to him) as “a God complex.”  That comment was very much said as if he did not recommend it, but if I wanted to override his recommendation he couldn’t stop me.  I made another appointment for next year on my way out.

This is why I was so surprised and excited when I read his after-visit summary.  He would never say anything the least bit encouraging during an appointment and was even more careful to not put anything remotely encouraging in writing.  But there it was.  Under the heading of “Plan” it said “At this point, it has been 10 years.  Chance of recurrence is very low, but not 0.  Her options are to follow-up as needed or we see the patient back here for routine oncology surveillance follow-up in 12 months with appropriate imaging studies as ordered.”  No doctor can ever tell anyone their chance of cancer is zero, but for him to put in writing that my chance of recurrence is very low and to offer the option of following up as needed going forward felt like exactly what I had been asking both my intuition and God for.  So, I canceled my 11-year follow-up appointment.  I won’t hesitate to schedule an appointment, if there is any question about something, but I really feel that was the confirmation I was requesting.

My Undifferentiated Pleomorphic Sarcoma bone cancer was so aggressive it doubled in size between the initial find and final diagnosis three months later.  Many of my other doctors have expressed their opinion that if any of this cancer was still remaining in my body it would have shown itself by now, but my surgeon never said anything like this even when I would ask him point blank.  So, his note spoke volumes to me.  I am reminded of my initial prognosis all those years ago and the bleak odds even though I did surgery, chemotherapy, and radiation.  There was no one in the medical field that I spoke with who really thought I’d be here ten years later.  But my family and I decided to take it one day at a time and never give up hope.  To my doctors I say thank you, to my family and friends I say thank you, but most importantly to God I say thank you.  I do not have my head in the sand, I am well aware there are no guarantees in life.  I will continue my ongoing scans/appointments for my more recent breast cancer diagnosis, but for now I am going to live each day choosing to believe I am healthy (even on the days my fear creeps back in).  When I reflect on my initial prognosis and if any other health concerns arise in my future, I will try to never forget something I have attempted to remember every step of my journey (some times more successfully than others).  People may count you out in this life, BUT GOD…