Fork in the Road

Riffing off the Movin' Right Along song a bit I'll label this post with it's end point...a fork in the road.  To do radiation or not to do radiation.  That decision doesn't need to be made right now, and it won't be as I do not have my appointment with my endocrinologist until the 11th.

I had the post-op appointment with my surgeon yesterday.  As I've said before, I feel so comfortable and confident with him, but that's technically the last time I'll see him (assuming nothing suspicious develops down the road).  It's not like the 17-year long relationship I've had with my rheumatologist (I love that blogger doesn't have that word in their dictionary!  Poor autoimmune diseases).  I met my surgeon a month ago today, he helped me make challenging decisions, he guided me and listened, he skillfully removed an essential part of my body, he patiently stitched me back together with my physical appearance over a lifetime in mind, and he answered as best he could my countless questions...and now...he's gone from this process.  It's my habit to connect with people and it's the habit of traumatic situations to force strong connections, so I have to say it's quite a loss.  He hugged me and shook my hand, gave me advice on a couple possible endocrinologists to schedule with, and sent me on my way.  I know I can call him again, but it is so different than my earlier experience of illness.  Still, he was helpful to the last and I know is a resource should I need him. 

Yesterday the medi-tape and glue came off the incision (okay some of that glue was pretty stubborn and will come off in its own sweet time).  So I saw the incision and eventual scar for the first time.  It was emotional for me, something I've been quite nervous about for a variety of reasons.  I'll admit some quiet tears, but I think I did pretty well and I think it looks pretty good for being a whopping 7 days old.  I'm not ready (and not sure I ever will want to...seems a bit odd) to post a picture, but those friends (including a nurse) who have seen it all say it looks "great" with authenticity in their voices.  We talked about how to make it look its best and I feel confident moving forward.  I also am loving the various scarves I have received (I'll do a post on them at some point) which will help particularly in these first few months.  It's nice to protect the scar, hide it from strangers and students, and feel wrapped in love from others all at the same time!  I promised the Physician's Assistant I wouldn't be the crazy woman on the beach all draped and scarfed, but if you see my in Christmas Cove or paddling on the water when I'm out all day you better believe I'll be wearing a scarf or other neck covering.  

We then talked about the pathology and next steps.  From the report (which I actually read after the visit so need to clarify a few things) it sounds like at least part of a parathyroid found its way into a specimen tray :( but the operative report details him preserving them...so I'm not sure what happened there.  Perhaps a small portion was taken, perhaps he worked to save something that wasn't a parathyroid, perhaps I had 5 (unlikely but I don't really know).  Either way, they say you only need one and I have at least 3 left.  I also had multiple tumors (2 from my reading) in the right lobe of the thyroid.  This was unexpected for me, though I knew I had a (what appeared benign) nodule on the right and a smaller more suspicious one was likely there.  So it turns out there was some malignancy in the larger one (though not all of it) and at least one more other one in that right lobe (certainly good we took the whole thing).  The lesion the the left was also malignant so that means it is "multifocal".  Multifocal points in the direction of yes to radiation.  The other thing that points yes to radiation is that it was present in 4 lymph nodes (of 16 biopsied); however, all of these were in the central section which is the best place for them to be (i.e. they are where you would first expect them to be...none of those further afield had become malignant).  But other things were good (as we had thought): it is papillary--predominately, though not exclusively, "classic papillary" (the best kind), it is all contained (e.g. it didn't extend beyond the body of the thyroid or lymphs), it's not vascularized (i.e. it's not apparently in the blood or lymph circulation), none of the tumors are super big (nothing bigger than 1.2 cm), the cancer cells themselves are well differentiated (again, in thyroid cancer at least differentiated are better than undifferentiated--I don't think this means the edges of the tumor was clear, just that the cells were differentiated), and the margins were clear as far as I can tell from my reading.  So as long as there aren't malignant lymphs he didn't take (see) or microcarcinomas...he got all the cancer.  Recurrence rates in general are 30% in 15 years and younger patients have more recurrences (though better prognoses...just more time to recur perhaps). 

So a few surprises that took me a day to grapple with (hence posting today not yesterday) and some bumps in the road, but generally the picture we had thought.  This leaves us though, in the land of "expert opinion" on whether to do radiation.  We don't have data to say that it actually helps prevent recurrence (thankfully people don't typically die from this so there isn't enough variability in the outcomes and the data is all mixed across various sites with different surgeons and radiation protocols).  We know it doesn't lower death rates (see prior sentence).  As a scientist this drives me crazy.  Literally, based on the size of the tumors the official recommendation in the Thyroid Association guidelines (yes I've read them) is "inconclusive" and based on the lymph node involvement "recommended for select patients based on clinical expertise" but not based on data.  We don't know it helps, but generally the side effects and long-term sequelae are not that bad (for most people)...so the possible benefits outweigh the relatively known risks (or so the thinking goes).  So here is where I end, at the fork in the road.  I have two appointments and a whole body scan that should help me make my decision.  And then, a choice.  There are arguments on both sides, and I don't really need or want outside opinion other than my medical team, just wanted to say out-loud that it is frustrating.  It's not clear cut...and so I return to the words of the rheumatologist I've had for 17 years "medicine is more of an art than a science".