Oral Cancer: Surgery

Earlier this year I decided to write a few posts on oral cancer.  I know it seems like an odd topic, and 2 years ago I wouldn't have had the first clue about it, but now that we have been through it, there are many things I think it would have been good to know in advance of treatments. 

The first post is here, and it's primarily about awareness.

In this post I want to write about surgery, because surgery is frequently the first line of treatment for an oral cancer. The idea is that you want to physically remove as much of the cancer as is safe, possible, and practicable, and then move into radiation and chemo treatments. 

I will re-iterate again what I mentioned the first time around: if you or someone you love is diagnosed with oral cancer, find a good comprehensive cancer center and go there.  That is, by far, my #1 tip. 

My husband's first surgery was a shorter one (it was supposed to be four hours, but it was six). The surgeon removed as much of the cancer as he could, aiming for clean margins around the tumor, and then "patched" it with a beautiful rectangular skin graft from my husband's right thigh.  Because a PET scan had indicated that the cancer was only in his mouth, and the few lymph nodes the surgeon removed from his neck were free of microscopic cancer, everything looked great. 

But it didn't work.  In two months the cancer had spread to his lymph nodes and--we found out after his second surgery--burst out of them and encroached upon his hyoid bone and jugular veins, as well as soft tissue around the lymph area.  The second surgery, at the University of North Carolina, was extensive.  It was 11 hours long. My husband had to have a tracheostomy (which, due to the location of his cancer and the fact that his mouth didn't open wide enough, was a "wake trach" done right before he went under).  The surgeon removed 30% of his oral tongue and 50% of the base of his tongue before removing all the lymph nodes in his right neck, part of the hyoid bone, and part of the jugular vein.  Then he rebuilt my husband's tongue with tissue taken from his arm (a most impressive 12" scar!). 

His recovery from the first surgery was fairly easy: one night in the hospital, a liquid diet, no real pain, and rest for a month or so.  My husband was back to eating and drinking basically normally in no time.  Two months after surgery, he ran in a 10-mile race....and beat his surgeon, who also ran.  :)  

The second surgery was a different beast. We spent six nights in the hospital.  He couldn't talk for several days. He had a nasal feeding tube which was extremely uncomfortable, and the surgery triggered excessive mucus production which prevented him from sleeping for more than a few minutes at a time (not an exaggeration; I was there, and I would time him).  It wasn't safe for him to take any sleeping medications because of airway issues due to the tracheostomy, so all we could do was try melotonin, which didn't work.  It was miserable, but he was as patient as a saint.  After staying in ICU for a couple of days, he was moved to a regular room, and he began a walking regimen around the hospital floor. I steered the IV pole.  Later, after he was unhooked from the IV, he could roam farther, and he got several comments from people who stood and marveled at this guy with a HUGE arm scar with 42 staples, neck scar, trach tube, Hoka running shoes, and hospital gown zooming around.  (Seriously--if he can exercise in that condition, I have no excuse not to workout!) We walked miles each day!

He was never in pain from the second surgery, which surprised us. (Of course he was on pain medications in the hospital, around the clock, which certainly helped; after he got home, he was able to quickly quit taking them.)  But he was extremely uncomfortable and exhausted.  The exhaustion was the worst part; the second worst was getting the trach tube cleaned out twice a day. But he weathered it all with grace. He eventually proved that he could swallow, so he was released from the hospital and came home to a diet of soups and smoothies.  Amazingly, his physical recovery took off, and a couple of weeks after surgery he was digging a new patio flower bed for me outside! Within 4-5 weeks post-surgery, he was back to what seemed like full functioning. 

And then radiation hit--but I'll cover that next time. 

Oral cancer surgery is obviously performed on a delicate area of the body whose function is essential.  So functionality is bound to be compromised.  The tongue is heavily involved in "tossing" food to the back of the mouth and clearing the mouth of any post-meal debris; without its usual agility, swallowing becomes more laborious.  But we were pleasantly surprised at how well my husband seemed to get back into eating after surgery, and how his speech seemed to improve as well.  The first surgeon we had did not recommend a second surgery because it was too extensive and would cause too much long-term functionality compromise, but our surgeon at UNC shrugged that off (this is why going to a comprehensive care center is so essential!), saying that surgery itself really wouldn't end up with long-term function impairments.  And he was correct. 

And then radiation hit....

*         *          *

The takeaways from this are: 

First, head straight for a comprehensive care center (I can't say it enough); 

Second, oral surgery is extremely daunting, but if it is performed by a skilled, experienced oncology surgeon, recovery and functionality may be much better than you might expect; 

Third, the worst post-surgical issue my husband had was lack of sleep, but he's also a tough cookie. His sleep issues did improve once we got home. Expect mucus production to be surprisingly high--a disgusting after-effect.  The hospital had a suction machine he was able to use, but you can't use it while you sleep; therefore, we barely slept, because he was suctioning the mucus constantly.

*            *          *

The day we got our second opinion at UNC, I cried (sobbed) all the way home--and we live in another state. I could not believe the extent of the surgery UNC was recommending and I was absolutely terrified.  But after MUSC (in Charleston, SC) confirmed that extensive surgery was the standard of care, and we accepted that, I braced myself.

The truth of the matter was that the surgery is only one day, and the recovery--at least for a 42 year old man--wasn't nearly as hard as we thought it would be.  It was, without a doubt, the right thing to do, but it was hard for us to come to that decision at first.  It actually took an incident of what I believe to be divine intervention (a "coincidence" that was just too coincidental) for us to believe that surgery at UNC would be the right thing.  And it was.

Next time I'll just offer some tips for surviving a week-long hospital stay.  I am sure there are plenty of people who have endured much longer hospital stays who will have even better advice, but I'm just going to offer what I know, based on my own experience, in the hopes that if some scared wife is googling "oral cancer" in the middle of the night, she may get a little bit of hope here. Because there is hope!

Always.