BOT / Neck Dissection surgery

soccerfreaks said:

surgery
Gib,

As you know from reading these pages, everyone's treatment and response to treatment seems to be unique in one way or the other, so I can also describe my own situation to you, or at least answer your questions from my own history's perspective. Take it with a grain of salt, especially it was back in October of '05 that I had the surgery, things have changed since then, and I had TWO ENTs doing the surgery, one of whose specialty was plastic surgery.

I had half of my tongue replaced by muscle and nerves from my left arm. I think it was because of the nerve transplant that my surgery lasted so long (15 hours). I also had a radical neck dissection. I then spent four days in an induced coma. I have yet to meet another person here who went through the exact thing I did, so, again, take this with a grain of salt.

1. I would bet that you will be on a PEG tube. Your surgical wounds will need time to heal, there will likely be swelling, and most of us report issues with eating even many years later (I am now nearly six years out, and still working on eating some things whose texture, for example, makes it difficult to get down). I am off the tube now for nearly two years, so you CAN hope/expect to remove it, maybe sooner than later, as some others will tell you.

2. Loaded question, indeed! Depends on size and location of tumor(s) among, perhaps, other things beyond my knowledge.

3. Salivary glands, as far as I know, are impacted by radiation treatment rather than surgery, unless your doctors have reason to suspect they are also diseased.

4. Following my surgery in October (and subsequent chemo and seven weeks of rads, I was advised not to return to work until April of '06, but went back in February, probably not the best of ideas, but I did it.

5. Probably will talk different. The tongue has a tremendous amount to do with speech. You will like acquire a speech therapist (to help with both speech and swallowing). In my case, I sometimes have to tell people, especially on the phone, that I am not drunk, because of the slur. I am understood, but some consanants elide (get skipped over or are hard to say). I can't whistle anymore either.

6. Mine is not so bad, really.

7. Perhaps they have. I hope so!

Best wishes for successful surgery, recovery, and eradication of the cancer.

Take care,

Joe

huskyflake said:

everyone's different, but here's our story
Hi - My husband has also been diagnosed with BOT cancer and went the surgery-first route. He had a neck dissection 3 weeks ago and a partial glossectomy on the left side of this tongue two weeks yesterday - and radiation is next.

Neck dissection - in the hospital just one night. Fairly easy first week at home - nerves are reconnecting now and he's been in quite a bit of pain for the last few days. Scar? No problem. Handsome as ever. He was back at work one week later and didn't cause any audible gasps!

Partial glossectomy - went faster than we expected and they got clear margins. I was probably more unprepared than he was. One night in the hospital - they let him go home as soon as they were confident he could swallow pain meds on his own. No tubes for him, but he didn't eat much the first few days (have lots of jello on hand). Speach still slurred two weeks later, but markedly better. We ordered pizza tonight - and I made the phone call b/c he's still a little hard to understand over the phone. In person, fine (and yes, he ate pizza and salad, so getting back to normal food is fairly quick). He hasn't seen a speach therapist - and probably won't. Definitely would if he thought he needed it though. This was a big concern for us. He's a gifted speaker - and talks to large groups often as part of his job. I expect he'll be back on track for this soon.

'Hope that helps a bit. Good luck with it all! This is only my second post - as you, I'm glad to have the support!

soccerfreaks said:

surgery
Gib,

As you know from reading these pages, everyone's treatment and response to treatment seems to be unique in one way or the other, so I can also describe my own situation to you, or at least answer your questions from my own history's perspective. Take it with a grain of salt, especially it was back in October of '05 that I had the surgery, things have changed since then, and I had TWO ENTs doing the surgery, one of whose specialty was plastic surgery.

I had half of my tongue replaced by muscle and nerves from my left arm. I think it was because of the nerve transplant that my surgery lasted so long (15 hours). I also had a radical neck dissection. I then spent four days in an induced coma. I have yet to meet another person here who went through the exact thing I did, so, again, take this with a grain of salt.

1. I would bet that you will be on a PEG tube. Your surgical wounds will need time to heal, there will likely be swelling, and most of us report issues with eating even many years later (I am now nearly six years out, and still working on eating some things whose texture, for example, makes it difficult to get down). I am off the tube now for nearly two years, so you CAN hope/expect to remove it, maybe sooner than later, as some others will tell you.

2. Loaded question, indeed! Depends on size and location of tumor(s) among, perhaps, other things beyond my knowledge.

3. Salivary glands, as far as I know, are impacted by radiation treatment rather than surgery, unless your doctors have reason to suspect they are also diseased.

4. Following my surgery in October (and subsequent chemo and seven weeks of rads, I was advised not to return to work until April of '06, but went back in February, probably not the best of ideas, but I did it.

5. Probably will talk different. The tongue has a tremendous amount to do with speech. You will like acquire a speech therapist (to help with both speech and swallowing). In my case, I sometimes have to tell people, especially on the phone, that I am not drunk, because of the slur. I am understood, but some consanants elide (get skipped over or are hard to say). I can't whistle anymore either.

6. Mine is not so bad, really.

7. Perhaps they have. I hope so!

Best wishes for successful surgery, recovery, and eradication of the cancer.

Take care,

Joe

semihauler said:

radical neck disection
Let me start by saying i am new here i did not know this was here. I also had a radical neck disection 12.5 hrs surgery 3 day coma and 15 days in icu. they removed 1/2 of the base of my tongue removed most of my soft pallet removed my left tonsil and replaced all of this with a patch from my left arm. 7 years out and i still have problems eating some things, mostly meat thats not processed. ihave to always have something to drink because of saliva not working right. my cancer went up my spine to about 1 inch from my skull. I wemt back to work 8 weeks later on light duty. I still have headaches all the time and talk funny but i am alive and that is all that realy matters . I hope and pray that all is well. I will write more later if thats ok i have to get back to work.



Doug (semihauler)

semihauler said:

Thank you
Thank you all for making me feel welcome, its nice to know there are people to talk to who understand. For 7 years Ive been looking for help with questions. I cant seem to find anybody here in Az. that understands what im going thru. They took all of the muscle tissue from the front of my neck, and 105 lymph glands, and most of my salyva glands, I have to carry a glass of water every where I go. what can i do about dry mouth at night, i wake up 3-4 times a night to drink because of dry mouth?

gibkoch said:

Post surgery update ...
My friends,

Thanks again for all of your contributions to this board. I was very scared about this surgery but your comments back in August helped calm me down and get me mentally prepared so I wasn't a basket case prior to surgery. I'd like to share w/you some notes from my surgery and the post surgery biopsy results which I received today.

As explained, I need two surgeries. For the BOT, I was hoping to accomplish this via robotics. I researched the Mayo clinic in MN (Dr Moore) as well as the Seattle Cancer Care Alliance (Dr. Mendez). Turns out those two Dr's knew each other as the number of Dr's that do transoral robotic surgery is a very small community. I selected Seattle for it's proximity to my home as well as my sister lives there.

Surgery was on a Friday. Assisted by the robot, Dr Mendez removed my right lingual tonsil at the BOT and in three spots dug down into the tongue base itself. Initial biopsy during the surgery showed clear margins throughout. He then did the neck dissection which I'm understanding approximately 40 lymph nodes were removed. Post surgery, I stayed in the hospital over the weekend but I was discharged on Monday. Somebody had told me that compared to chemo/rads, this would be a breeze but I didn't believe until I experienced it. I'm literally tickled at how quickly I'm able to function and rebound from this surgery. The only thing that didn't go so smoothly was my transition to lower meds this past weekend. It was not good and as such I didn't eat for about 48 hrs. I've lost 7lbs since surgery and over 25% of my body weight had already been lost via treatment so I've got to keep up my body weight ...

Dr Mendez, his staff, and those at the UW medical center were truly awesome. I cannot recommend him enough and wish I'd seen him prior to chemo/rads. People (janitors, secretaries, nurses, residents) at the UW med center went of their way to tell me what a wonderful Dr and more importantly, wonderful human being he was. He definitely didn't disappoint. If anyone wants his contact information, feel free to ping me and I'll gladly send you his information.

Lastly, the final biopsy report came in tonight. Again the tongue showed clear margins. The neck had one lymph node (the original one that had shown activity) that was still active. There were multiple nodes tested on the two layers below this active node. All other nodes came back negative for cancer.

So at this point I believe I can call myself a survivor. I understand that the future holds no guarantees for me but I'll take today. It is a nice gift to have!

God Bless all of you!

Gib