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Adenoid Cystic Carcinoma

lts's picture
Posts: 75
Joined: Nov 2012

Well, Just over two weeks since neck disection and I can move more than my eyeballs. Thats good huh. Still very stiff but I an strecthing and flexing in prep for rad tx's. They said 4 to 6 weeks to heal and we can get going. They removed a bunch of lymph nodes, fat and muscle. All came back NEG. Thank you God! So the details are; Stage 2, no lymph node involvment, no perinural invasion, no other mets anywhere else. I do however have some pain behinde right ear, not bad but it comes and goes. I mentioned to Doc several times and will again. Every little twinge in that area scares me.

fisrpotpe's picture
Posts: 1349
Joined: Aug 2010

that is wonderful news to celebrate with someone what of smile with all the pain your in.

those results will sure make the radiation treatments easier knowing that nothings there and radiation is cleaning up the small non detective cancer.

normal for any little twinge to mess with your thoughts, let them go and get that positive attitude going.

your well on your way to kicking ACC's back side.


phrannie51's picture
Posts: 4673
Joined: Mar 2012

I'm sorry you spent so much time only moving your eyeballs...very descriptive, by the way...LOL.

WHOOO HOO on the everything coming back negative!! I think it takes practice not paying attention to every little twinge and pain...I still have moments when I say "uh oh"...then it passes...doesn't matter where it happens...I still get the "uh oh" feeling.


Posts: 1914
Joined: May 2012

Hello !
Rest up for the tx's...but relax ! I am so wonderfully happy for you ! The pain will lesson from surgery, and yes continue to do those gentle exercises ! Any time I hear of someone kicking *** on ADCC I rejoice ! Will be thinking only positives for you ! Katie

CivilMatt's picture
Posts: 4317
Joined: May 2012

New Warrior (no offense meant),

The twinge reaction can not be helped. You start to take notice of any ache or pain especially in the target area. You got some god news; the beast hasn’t appeared to wander, which means a narrower focus of radiation, which means (hopefully) less intense side effects from treatment. Next, your team will develop a plan and then cleaning house on this intruder begins.

I wish you a smooth and uneventful journey (and less scary). My path had a few rough spots, but my team (including cyber H&N friends) helped me along the way. Don’t hesitate to ask any questions you have, our answers are often brutally honest (cancer has no friend here).

Best always,


lts's picture
Posts: 75
Joined: Nov 2012

I got a call from Onc office to schedual appt for simulation, Dec 7th @ 9:45. Excited and anxious. I am not good at sitting still but trying to remain calm. I really appriciate the comments and good will. Thank You.

They did tell me they were going to radiate the area in question(right submandibular gland) and all nerves near to the base of my skull. Has anyone had this done and does it damage the nerves?


Billie67's picture
Posts: 843
Joined: Jul 2012

I'm thrilled for you that you got such good news. This should make treatment a little easier in that area. Please stay with us and feel free to ask any question you may have. As far as your question about nerve damage around the skull, I'm not quite sure on that one. My rads went all the way around my neck and I have one lingering annoying symptom but I'm not sure if you'll get it with your treatment. It's called Lhermitte's and it's not so much painful as it is annoying. It starts about 4 months or so after treatment is complete and it decides how long it wants to last. It is nerve related and produces a lovely numbing zapping sensation down my legs when I look down. Some people get the sensation in only one leg or somewhere else like just their feet. In my case it goes down both legs to the tips OD my toes. Sometimes I get it down my spine too. Dr says it's common and will go away. I've had mine for a few months mow. Like I said tho, it's more annoying then anything else. I don't know about any other nerve related thing you might get but I'm sure someone else will come along very soon and let you know. This site is so awesome and I'd be lost without it, so be sure to stay with us and again ask us anything.
Take care,

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