When You See A Fork In The Road, Take It

Went to LRCC this morning for my Radiation Simulation.  That's where the radiologist's team determines how I'll be positioned on the table, take measurements, and create the mask that will keep me still during treatment.

Dr. Guerrier had already gotten the report from the PET scan from Wednesday and had both Good and Might Be Bad news.  The Good news: no distant metastases to my torso and legs -- clean as a whistle.  There was also a small spot on my right neck that looked suspicious, but that was somewhat expected.  It may be a reaction from the surgery, or a little bit of MCC that the surgery missed.  Not a big deal; that's why I'm getting radiation in the first place.  The Might Be Bad news: a small spot lit up under my mouth on my LEFT side.  Those paying attention to the story will remember that my MCC was on the RIGHT face and neck.  The right and left face drain separately, so there shouldn't be any mixing between the separate lymph node beds on the right and left side.

What does this mean?   All the image shows is a "hot" lymph node, nothing about its contents or constitution.  It could be that the spot on the left is a simple reaction from the surgery.  Dr. Guerrier says that it's not uncommon for nearby lymph nodes to react to surgery, in which case it's nothing to be concerned about.  It could be a small but growing metastasis from the MCC on the right, but it's vary rare for a tumor on one side of the face to metastasize over to the other.  But then, MCC is a rare cancer.  And it's rare for a 17 year old for to have renal failure.  And it's rare for a transplant from 1979 to last 25 years.  I'm willing to bet that I can pull off this rarity too, so Dr. Guerrier wants me have it biopsied.

Dr. Guerrier and I toyed with the idea of having Dr. Reintgen, my original surgeon try to biopsy this spot, but after Dr. Guerrier called Dr. Reintgen, they decided surgical biopsy wasn't a good idea because the spot is small and deep and it's not palpable,  The surgeon would essentially be digging blindly in my neck.  Dr. Guerrier decided on an ultrasound guided biopsy that can be done nearby.  Everyone knows how much I love having long needles shoved into my neck, so I jumped at the chance.  The results of the biopsy will affect how I get irradiated. 

Dr. Guerrier could go ahead and plan my radiation around both sides of my neck, but if the new spot isn't malignant that would expose me to extra radiation needlessly.  If the biopsy turns out negative, she can plan for just my right face and neck.  If the biopsy turns out positive, they need to determine how positive it is (and the doctors in the audience are cringing at my terminology now) to see if it warrants further surgery,.  If it does, Dr. Reintgen will be called in to craft another hole in the left side of my neck to remove lymph nodes.  If doesn't warrant surgery, Dr. Guerrier can modify her radiation plan to also include the spot in left side of my neck too.  

Having worked with computers and software for the last 25 years, I can't resist putting it this way:

IF biopsy = negative {
  radiationPlan = right face and neck;}
ELSE {
  IF biopsy very positive {
    surgery = yes;
    radiationPlan = right face and neck AND left face and neck;
    modifyPlan = include surgery;}
  ELSE {
    surgery = no;
    radiationPlan = right face and neck AND left face and neck;
    modifyPlan = include no surgery;}
  ENDIF }
ENDIF

I feel better now.

Another reason Dr. Guerrier is waiting on the biopsy is that any possible surgery will change the landscape inside my neck, moving all the lymph nodes and nerves and muscles around.  I haven't asked, but I think she plans her radiation fields on the order of millimeters or smaller.  If she plans for the tumor site to be in one spot and surgery moves it even just a little, she won't be able to deliver an effective dose of radiation where I need it and some other innocent bystander tissue will get it instead.  She uses the term "respect the surrounding tissue" which I think is an excellent way to phrase it.

After we decided to do the biopsy, we went over the scary form that lists all the possible side effects of my treatment.  I learned a long time ago reading drug package inserts that if you take them at face value, you'd rather have the disease rather than the drug that cures it.  A nurse explained to me that drug companies put anything and everything down that could possibly happen so their legal backside is covered.  Even if it happens to only one person, it gets listed.  Today I learned that I may lose the ability to swallow, have a permanent sore throat, permanent dry mouth, hoarseness, jaw stiffness, blindness, loss of taste, loss of hearing, and poor gas mileage (I made that last one up).  The alternative of course is to die of MCC, so I signed the form.