Squamous cell carcinoma of right tonsil

wmc

luv_freedom said:

OMG!

Back home from surgery. This has got to be the most painful recovery I've ever gone through. Won't know about any rad treatments unitl I go back to see the doctor for follow-up visit in two weeks. He said that I came through the surgery very well. My sister told me that I was in the operationg room for 7 hours! Someone else came from the team and I remember them saying I had a pretty deep tonilectomy to get everyghing. I haven't had a minute without pain since I got home on the 4th of July.

 

Gary

Yes the pain can be something....

My surgery was 8 hours but they said it could have been up to 15 hrs. I was cut from ear to ear and total larynx removed and neck dissection on both sides. The drain tubes is where most of my pain was. I could not raise my head on my own for many days. I had to lift it with my hand or is just stayed where is was. Your doctors should have given you meds for the pain, and call them if they didn't. I was on morphine for the first four days then dropped down to something a little less. I could not swallow for 8 days, not even saliva had to be suctioned out. I was able to swallow on day 8 and left on day 9. Clear liquid on day 8 and any liquid from 9 to day 17. Most of my pain was when they pulled out the drain tubes the pain kicked in much more. It does get better but it can be very slow. Get the pain pills and stay ahead of the pain, you do not want to play catch up on that. Soon you will wake up one day and realize it doesn't hurt much and I can turn my head more. Hang in there it will slowly get better.

Bill

Oct 2013

luv_freedom

wmc said:

Yes the pain can be something....

My surgery was 8 hours but they said it could have been up to 15 hrs. I was cut from ear to ear and total larynx removed and neck dissection on both sides. The drain tubes is where most of my pain was. I could not raise my head on my own for many days. I had to lift it with my hand or is just stayed where is was. Your doctors should have given you meds for the pain, and call them if they didn't. I was on morphine for the first four days then dropped down to something a little less. I could not swallow for 8 days, not even saliva had to be suctioned out. I was able to swallow on day 8 and left on day 9. Clear liquid on day 8 and any liquid from 9 to day 17. Most of my pain was when they pulled out the drain tubes the pain kicked in much more. It does get better but it can be very slow. Get the pain pills and stay ahead of the pain, you do not want to play catch up on that. Soon you will wake up one day and realize it doesn't hurt much and I can turn my head more. Hang in there it will slowly get better.

Bill

Oct 2013

Thanks Bill. I remeber your story with all of the stuff you had done. So sad to think of what you went through. Did you get any partials for yourself? I have dental insurance but haven't talkd to my dentist yet. Too soon to think about that just yet maybe. I'm glad your there for support. The healing just seems to be taking forever. But after reading your post I'm not sure now. I agree with keeping on top with the pain meds. They didn't do that well enough while I was in the hospital nor with what they gave me to go home with, and I ended up bottoming out twice with the pain so bad that I couldn't even open my eyes and just sat there leaning forward on whatever I was sitting on justing rocking forward and back. They had me taking a liquid form of hydrocodon. That was not enough and I got so bad that my girlfriend brought me in to ER. They put in meds intraviniaously and got my pain back under control and changed my pain meds to oxycontine. By no means am I comfortable but much better than before. Still can't seem to be able to eat any real food. I can't chew it worth beans with what few teeth I have left and I'm having a lot of trouble swollowing it. Still very painful to swallow. Went back to ER last night because the side of my neck that the disection was done suddenly swelled up out of the blue like a blow fish. I noticed it in the mirror when getting ready for bed. They just did a CT and x-ray the day before due to me coming in for the pain. They didn't really have any answers other than to stay overnight and watch it or go home and watch it and call if it gets worse. Well I knew I didn't want to spend the night there. The swelling has gone down some so we're just going to keep an eye on it.

wmc

luv_freedom said:

Thanks Bill. I remeber your story with all of the stuff you had done. So sad to think of what you went through. Did you get any partials for yourself? I have dental insurance but haven't talkd to my dentist yet. Too soon to think about that just yet maybe. I'm glad your there for support. The healing just seems to be taking forever. But after reading your post I'm not sure now. I agree with keeping on top with the pain meds. They didn't do that well enough while I was in the hospital nor with what they gave me to go home with, and I ended up bottoming out twice with the pain so bad that I couldn't even open my eyes and just sat there leaning forward on whatever I was sitting on justing rocking forward and back. They had me taking a liquid form of hydrocodon. That was not enough and I got so bad that my girlfriend brought me in to ER. They put in meds intraviniaously and got my pain back under control and changed my pain meds to oxycontine. By no means am I comfortable but much better than before. Still can't seem to be able to eat any real food. I can't chew it worth beans with what few teeth I have left and I'm having a lot of trouble swollowing it. Still very painful to swallow. Went back to ER last night because the side of my neck that the disection was done suddenly swelled up out of the blue like a blow fish. I noticed it in the mirror when getting ready for bed. They just did a CT and x-ray the day before due to me coming in for the pain. They didn't really have any answers other than to stay overnight and watch it or go home and watch it and call if it gets worse. Well I knew I didn't want to spend the night there. The swelling has gone down some so we're just going to keep an eye on it.

Thanks but i'm good

I don't feel like I went through that much but I guess I did. I knew if they remover the tumor I would be fine. I knew going in I would my voice and breath through my neck. It's not that bad really. The key is you have to accept it. Yes some people stair, but it is not being rude, they just have never seen someone push a filter in there neck to talk or breath. To me I am so lucky, as only five people thought I would make it and that is counting me and my wife and doctor. Over my life time There has always been something to overcome, but that is normal for me. I don't know any other way. Wife was disabled five years in to marrage, but she is good, and we adapt. I had lung problems but still did what I wanted to. Surfed, raced cars, took and even taught gymnastics, did hang gliding to get over a fear of heights, it worked, took martial arts and was an instructer for underclass belts. This is just another part of my journey. Now I'm in several support groups and can help other's with cancer or have Laryngectomees. I'm part of a world wide support group WebWhispers and help there Forum and Facebook page. I give talks to High Schools all over my county on anti-tobacco. So for me, I am a live and helping others. I ride my bicycle 5 ~ 20 miles every day and have stage 3 Emphysema, but it won't stop me eithor. Can't get better than that. You just have to accept and adapt, and it just keeps getting better.

Don't be afread of pain pills. You need then now and when the time comes you will be able to cut back and off compleatly, just not yet. Recovery is a slow process. But celebrate all the little things you do accomplish, as they are not little and should be celebrated. Just one day at a time, and Never Give Up. 

Oh as far as dental, I lost all my teeth at 28 do to a disease and have full uppers and lowers. What was hard to get used to was phantom pain. I ate a piece of candy and had a tooth ache. But it is not real so pain pills won't work. It goes away in time.

Bill

luv_freedom

radiation treatments next

So I have my first visit to get things set up for treatment tomorrow. Been doing some reading on this and thinking that this is going to be pretty painful and I may have a number of side effects that none of will be good. I believe that it will be 5 days a week for 5 or 6 weeks. but with the surgery done to remove tumor and one gland, my surgical doc said that the rad treatments will be at a lower dosage than if I elected to do rad only. He believes that since I had the P16 type cancer and that I was a N1 that his feeling was that I don't need to do the chemo but was up to me. I would rather not since I have a transplanted liver. So how bad is this radiation treatment going to be? I have a knot on the side of my neck going down to my shoulder like the muscle is tensed up and won't relax. Develoed about a week after surgery. But they just want to watch it for now. ?? It's a little better but not that much. I'm numb from my ear down to the tip of my shoulder. From what I'm reading it sounds like lymphoedema.

wmc

luv_freedom said:

radiation treatments next

So I have my first visit to get things set up for treatment tomorrow. Been doing some reading on this and thinking that this is going to be pretty painful and I may have a number of side effects that none of will be good. I believe that it will be 5 days a week for 5 or 6 weeks. but with the surgery done to remove tumor and one gland, my surgical doc said that the rad treatments will be at a lower dosage than if I elected to do rad only. He believes that since I had the P16 type cancer and that I was a N1 that his feeling was that I don't need to do the chemo but was up to me. I would rather not since I have a transplanted liver. So how bad is this radiation treatment going to be? I have a knot on the side of my neck going down to my shoulder like the muscle is tensed up and won't relax. Develoed about a week after surgery. But they just want to watch it for now. ?? It's a little better but not that much. I'm numb from my ear down to the tip of my shoulder. From what I'm reading it sounds like lymphoedema.

Yes, no, and most likely.......

Radiation is a rough road to go down, but necessary for so many to fight this. Side effects, yes but you might get some and not all of them. It effects everyond just a little different due to where and hot deep and just how your body reacts. It does make the skin like leather and much stiffer, so you have to keep streaching slowley. The "possible" side effects are many and most not very good, but what it does is worth it. Some of the meds I have to take with my COPD I would see advertized on TV and thing, who the heck would ever want to take something. Then I got Stage 3 COPD and it is worth every bit of the risk. I even had a younger coworker tell me, he would never take any maintenance drugs. I smiled and said," I am pretty fond of breathing", every one else just laughed and said that makes sense. I do breath so much better with them. I naver had to have radiation, so the others will chime in with good answers. Keep remembering the big picture and just take one day at a time. You're going to beat this. Also keep hydrated and keep swallowing.

Bill

donfoo

luv_freedom said:

radiation treatments next

So I have my first visit to get things set up for treatment tomorrow. Been doing some reading on this and thinking that this is going to be pretty painful and I may have a number of side effects that none of will be good. I believe that it will be 5 days a week for 5 or 6 weeks. but with the surgery done to remove tumor and one gland, my surgical doc said that the rad treatments will be at a lower dosage than if I elected to do rad only. He believes that since I had the P16 type cancer and that I was a N1 that his feeling was that I don't need to do the chemo but was up to me. I would rather not since I have a transplanted liver. So how bad is this radiation treatment going to be? I have a knot on the side of my neck going down to my shoulder like the muscle is tensed up and won't relax. Develoed about a week after surgery. But they just want to watch it for now. ?? It's a little better but not that much. I'm numb from my ear down to the tip of my shoulder. From what I'm reading it sounds like lymphoedema.

no free ride on rads

my surgical doc said that the rad treatments will be at a lower dosage than if I elected to do rad only

Sorry to say but you most likely are going to get 60+ grays. That is the minimum to ensure a total cancer kill. Whether it is 60 or 70, the trip is going to be tough.Just don't think because of that statement, you will experience less than what gets posted here. You will survive so just remember every treatment is killing hiding cancer cells! Good luck

luv_freedom

lymphedema

Had the surgery on 7/1/15 and rad treatments start on 8/17/15. I developed a large knot on my neck about a week after the surgery. they are telling me that it is fluid build up in the muscle tissue and will have to disipate on it's own? It is still buldging and is now effecting my ear drum and swallowing a little. The lump is bocoming unbearable and I'm having to take ibuprofen every 5 or 6 hours to help with the inflammation. They ordered a CT last Thusday but I haven't heard anything official from the head and clinic who ordered the scan. I think its lymphedema. I made an appointment with my primary doctor for today to get his opinion on this. If it's this bad now what is it gonna be like when I'm 3 weeks in to the rad treatments I wonder?

Any ideas or suggestions from anyone?

debbiejeanne

luv_freedom said:

lymphedema

Had the surgery on 7/1/15 and rad treatments start on 8/17/15. I developed a large knot on my neck about a week after the surgery. they are telling me that it is fluid build up in the muscle tissue and will have to disipate on it's own? It is still buldging and is now effecting my ear drum and swallowing a little. The lump is bocoming unbearable and I'm having to take ibuprofen every 5 or 6 hours to help with the inflammation. They ordered a CT last Thusday but I haven't heard anything official from the head and clinic who ordered the scan. I think its lymphedema. I made an appointment with my primary doctor for today to get his opinion on this. If it's this bad now what is it gonna be like when I'm 3 weeks in to the rad treatments I wonder?

Any ideas or suggestions from anyone?

i have it under my chin from

i have it under my chin from a neck disection on both sides of neck but i've never experienced pain.  having pain would worry me a little and i'd be contacting the doc to see what the ct showed.  please let us know what you find out.

God bless you,

dj

Crazymom

Don't give up

Survival rates are good for head neck cancer.  I had tumors on left tonsil and two left lymph notes.  I have been cancer free for 3.5 years.  You may just make it to 70!