Surgery Follow-up and Pathology Report

I went in for my follow-up with the ENT doctor that performed my surgery.  He looked at my neck and mouth and said everything was healing as expected, actually better than expected.  He said I shouldn't expect the pain to go away before next week.  I just need to apply some lotion to it and it should heal nicely.

My wife asked about my weight loss.  He said typically patients lose about 20 lbs after this procedure.  We were both pretty surprised at that high a number.  At this point I've only lost 5 lbs but it's definitely noticeable.  I can tell you that keeping your weight it definitely a problem because eating is so painful.  I typically only have a couple good hours to eat after taking my pain medication because after that it gets increasingly painful up until the time comes around that I can take another dosage.  The reason I can hold out taking the pain meds is because it's only painful to eat or talk.  If I don't do either of those two things the pain barely registers.  That is until about the 4.5-5 hour mark at which point pain starts to creep up whether or not I talk or eat.

He asked how my shoulder was since there was a chance of me losing motor function or feeling numbness in it as a result of surgery.  I said it was perfect.  Totally normal.  I did tell him that my right ear was numb and part of my right jaw.  He said that was normal and feeling should return to those areas in about four weeks after surgery.

Then we moved on to the pathology results.  He said there was good and bad news and proceeded to give me the good news first.  The good news is that they only found squamous cells in one of the thirty-one lymph nodes they removed.  So, he said, as far as my neck is concerned I am totally healed of cancer there.  That's awesome!

The bad news, he said, was that the tumor wasn't in the palatine tonsil they removed.  I think I might have said in an earlier post that I thought they removed all the tonsils on the right side of me.  Turns out they only removed the right palatine tonsil.  He said it did have two masses in them; one about the size of a pea and the other about the size of a .177 caliber BB.  However when they cut them open and examined them under a microscope there weren't any squamous cells in them.  They did find actinomycosis present which is a type of bacteria.

He said either the cancer was there and my body took care of it (ie - healed itself) or it's somewhere else.  He said since he could feel the masses in my palatine tonsil and he was confident that those were the tumors they were looking for he didn't remove any other tissue, specifically my lingual tonsil.  However, he said that since it turned out not to be in my palatine tonsil, there's a 10% chance it's actually in my lingual tonsil.  Those are the tonsils below the tongue in the front of the throat and are actually the ones I thought they were originally going to remove, but I had the names mixed up.

I asked him what about the chance that my body healed itself.  He said that's about a 10% chance, but he said it's entirely possible.  However they play the percentages and wouldn't rule that as a possibility until they've ruled out more probable possibilities.

I asked what do we do now?  He said that we let me completely heal from this surgery and in about four weeks we do an MRI scan of the area.  He said that's the most accurate scan for this but is still only about 60% accurate.  If that indicates a mass then we go in and take out the lingual tonsil.  If it doesn't show anything then we can still opt to take it out and have it sent to pathology and have them see there's any squamous cells in it.  That surgery will be similar to my palatine tonsil removal but will only take about 45 minutes and will still require an over night stay.

Since they didn't find a primary site they can't do radiation and chemotherapy because they don't have  anything to target.   So that's off the table.  My other option includes not doing anything but wait, scheduling regular visits/scans, to see if it turn's up somewhere.  He said the tonsils, which are similar to lymph nodes, form a circular system in your mouth and are all interconnected.  He said if it turns up he believes it's going to be somewhere in that system.

I'm not 100% sure what to do at this point.  I'm kind of leaning to the MRI scan and lingual tonsil removal.  The doctor didn't give me the impression that the wait and see plan was a good idea.  I'm also not looking forward to another tonsillectomy, but if it answers questions then I'd be willing to go through it again.  I'll need to gain some weight back first.

I think I need to do some more research on the actinomycosis they found in my tonsil and what that could mean.  Perhaps I need a second or third opinion on these results.  I may run them by my previous ENT and seek a consult from one at UCLA.  Their ENT and cancer departments are ranked in the top five in the U.S.

In the back of my mind I keep thinking how wonderful it would be if I did beat this with the lifestyle changes I've made since being diagnosed.  I keep that as a possibility of hope, but I remain prudent and want to be thorough in my thought process.

So, kind of mixed news.  On one end of the spectrum I may be cured.  On the other end it may just be hiding somewhere.  I'm really looking forward to getting off this liquid/soft food diet.  Not to mack down on burgers and fries, but to get back on my anti-cancer diet.  Actually, a burger sounds pretty good too.