Navigating my way through throat cancer

Had my PET scan this morning and met the surgeon along with a few other members of the team at the Mayo Clinic , will be having surgery in about 10 days on March 23 to remove my left tonsil with about a grape size tumor and a couple cancerous lymph nodes. I will be in a test study on low-dose radiation for tonsil cancer so hopefully if everything goes right, I won’t need the full six weeks. We’ll know more once the surgery happens and the lymph nodes are examined. Glad it was caught early and confident of a good outcome. There is a chance of no chemo or radiation, fingers crossed, but will deal with whatever comes.

@rllampton Good luck. I was in the DART 2.0 trial as well, and was lucky - got to stop proton therapy early. It isn’t easy, though it seems so at first. Follow their directions and get used to the phrase, “We have the beam. Do not swallow.” 😉

@jfh1970 glad you got to end the proton therapy early, how long was it. "We have the Beam. Do not Swallow" lol. I will remember that.

@rllampton Kinda like saying don't think about marshmallows! When they say don't swallow its all I could think about! We worked out a plan.

@jfh1970 glad you got to end the proton therapy early, how long was it. "We have the Beam. Do not Swallow" lol. I will remember that.

@rllampton I think I ended at ~28 sessions. Would have to check. It was a huge relief though, because at that point I was pretty miserable (zero taste - such an awful side effect, gagging on phlegm around the clock, some pain but controlled well with Tylenol and gabapentin.)

FYI - I made some customized coffee cups for the radiooncology crew and future patients. Gave them out at my bell ringing. They might have some left if you want one! 🤪

Well, it has now been 7 days since my surgery. I had a left tonsillectomy, along with about an 8" dissection to the left side of my neck. They removed the tumor, a couple of cancerous lymph nodes and 31 total lymph nodes. I head back to the Mayo next Monday for follow up and to discuss the next steps with the team. It has been a trying first week but thanks to all those who posts in this forum, I pretty much knew what to expect. I have struggled swallowing and eating as one would expect. At times I have been able to eat a little so taking advantage when I can. Hoping the worst of this phase is nearly over as my neck heals. Will see what the Dr's say next week about further treatment. I feel very fortunate that they caught this when they did, it is never easy to hear that you have cancer. I will remain positive and whatever the next steps are, will remain positive and take it one step at a time.

@rllampton
Glad to hear you have made it through surgery safely. The road ahead will be bumpy but you will get better with time.
I had 41 lymph nodes removed (3 “atypical”) as well as TORS surgery for a spot on the base of my tongue. What has made recovery smoother was doing swallowing exercises (as prescribed by Stanford University speech & language therapy) to keep those muscles involved strong & doing exercises for my neck area to improve flexibility as scar tissue will form during the healing process.
Surgery was seven months ago and follow up radiation ended three months ago…I’m doing much better physically and mentally now and getting closer to my old self. Still dealing with some issues but overall I’m pleased with where I am today.
Stay strong, keep the faith and take it one day at a time! We’re all rooting for you to come through this difficult time in good shape!