Hi Kim (Russo) -
I, too was diagnosed with SCC on my tongue after I noticed a small red spot on the right underside of my tongue. Mine DID hurt - not excruciating but I always knew it was there. When I ate anything spicy or acidic, though, it hurt quite a bit. I was diagnosed at the beginning of March and it came as a huge shock to me and my husband because I am otherwise totally healthy. Had I not mentioned the irritation (which I thought was just a little canker sore on my tongue) to my dentist, who knows how bad it could have gotten.
My lesion never did get that big - my surgery was on April 11th, so not quite a month ago. I was fortunate in that when they got in there, my lesion had not spread outward and ended up being a T1, N0. The surgeon did take out 29 lymph nodes to be safe, and the pathology on those came back clean.
I guess my point is that you cannot think the worst. Just hope for the best. Post-op will depend greatly on what they find during surgery. If it's very contained and not spread, he could be fortunate and not spend too long in the hospital. I was in ICU for 4 days. When I woke up from surgery (my first ever in my life), I had a feeding tube in, a catheter (ew), a "drain" in my neck and what felt like a ginormous piece of something in my mouth (they called it a "bolster" which is basically a big rolled up piece of gauze soaked with medicine).
Initially I couldn't speak - but mainly because of that bolster, which was partly sticking in my throat and my throat was irritated because of the feeding tube (but I was grateful for that when it came time for pain meds).
The bolster was removed on the 2nd day after my surgery and as a result, I was able to swallow clear liquids, which helped speed things up. My drain was removed the day before I was discharged (so on day 3) and that was painful as hell - they basically yanked it out of my neck. Good thing the doctor didn't warn me ahead of time of how painful that is because it would have made things worse. Because I was able to swallow 75% of my "food" tray (basically broth of some sort, juice and iced tea), I was discharged on day 4 but I had to stay on a liquid diet until my follow up appointment two weeks later. That part was rough for me because I love food so I could smell everything but all I was allowed to injest was liquids. Don't get me wrong, I became very proficient at making smoothies that were not too thick so that I could suck them through a straw - and they were tasty - I mixed low-fat plain or vanilla yogurt with peanut butter and sometimes fruit - like bananas. As soon as I got the go-ahead to eat solids again, I went at it full bore so any weight I lost between the surgery and my post-op follow up, I have since put right back on.
I have serious shoulder issues from the neck dissection (the removal of the lymph nodes), including some pretty acute shoulder pain at times and weakness. I'm right handed so doing things like brushing my hair can be a challenge but I push myself because I've been told that if I don't, I could get shoulder freeze.
I'm on short-term disability from work until my doctors tell me I can go back. My next follow up isn't until 5/16. No one can tell me what caused my cancer - it's very random. When I go back on the 16th, I am going to ask if they tested me for HPV
- just to rule that out.
My biggest concerns going in were 1) will i be able to speak normally? and 2) am i going to look like some sort of freak?
Some people might think these are shallow concerns but at work I basically teach people to use my company's multiple systems and processes - sometimes one on one, sometimes I teach large classes of my colleagues. My ability to effectively communicate is vital to my job so of course I was concerned.
Fortunately my speech has improved fairly rapidly - but I'm sure it's because it was a relatively small piece of tongue that was removed. Some S, SH and CH sounds can be challenging at times, but I'm working on those by just practicing.
Hopefully, your boyfriend's cancer will be small and contained and his recovery will be quick.
I know that I got lucky after talking to folks whose SCC was far more advanced than mine but I still wouldn't wish my experience on ANYONE. Cancer sucks no matter when you get it - the worst part is the emotional rollercoaster - at least for me it is.
I will say that a positive attitude is integral to healing after surgery.
Good luck to you both.