I am scheduled for surgery to remove the cancer from my neck & tounge on Aug 21st. this will be done at the VA Hospital in OKC. The procedure is listed as "left hemiglossctomy w/ left modified radical neck dissection, and tracheostomy" Im scared! ~ Will I be able to talk anymore? How will I eat, and overall I just don't know what is going to happen, both the worst case & the best case. Please let me know what your experience is & what to look out for

Hi Gary and welcome to our club no-one wants to be part of

I had a neck dissection so can advise you on that. All the lymph nodes were removed from the left side of my neck. It has healed nicely and the scar isn't too noticable as they did it in the crease of my neck.I couldn't drive for a short while as the mobility in my neck was poor at first but doing physio exercises really helped.

Good luck with all your procedures and keep us informed.

Love Chloex

Hi Gary, I didn't have the procedures that you are going to have but you've found the best place for support.
I found that most of my ops and treatments weren't as bad as I thought they would be, hopefully it will be the same for you. It's obviously a hard road to walk but a positive attitude really helps. Dont give up hope, I've been kicking about for nearly 11 years now. All the best for the 21st. Hagg.

thanks, will let ya know how it goes

my father did not have the above procedures but here are some thoughts from me. How much of the tongue will they remove? Do you have someone who can help you during recovery? get your home as prepared as possible!

I had a thyroid surgery and was told the scar would be about two inches and it turned out to be SIX - at first i felt like frankenstein but no one hardly notices as it is the crease of my neck. be prepaired for it to look ucky at first but when ok use aloe and creams to help scar! you might have a drain and that will really look ugly but it will be there for a reason.

when taking pain meds do not over do but dont wait until the pain sets in to take another pill or you willhave to wait for it to work.

try to stay nourished - try to stay posituve!! I think you should be able to talk from what I have read other go through but you might have to rework muscles you took for granted for years. As the docs mentioned anything about a flap? I am sure others will chime in who have had your same exact procedure!

continue to build a good support group - make lists - lists of things to do - stuff to buy - questions to ask - keep asking - keep learning.

I think it's natural to be scarred but try to use that energy to be proactive - and stay in touch on this board M

Hi Gary

Ding Ding! (That's me chiming in, just like HelpingDad said someone would.) I'd be worried if you weren't scared.

The procedure you're facing sounds like what I had in 2005. Are your docs doing a resection (or flap) as well as the hemiglossectomy? I didn't talk for about a month post-op because it just didn't seem like a good idea with fairly fresh sutures in my tongue and the floor of my mouth. I speak as well now as I did before. People I've met since my surgery don't know unless I tell them, and folks I've known forever say that I sound like I always did. The first time I talked to my brother-in-law post-op he said I sounded "virtually unchanged." I didn't have speech therapy.

Like Chloe, my neck dissection scar doesn't look too bad. The docs took 50 lymph nodes and all of them were cancer free (hallelujah!). Because of that I didn't need rt or chemo. My scar just looks like a natural crease. Because of the location of that scar, though, my trach scar is a bit lower on my neck than most such scars are.

After my ng tube was removed I worked my way up from Boost and baby food (fruits and vegetables exclusively) to smooth soups and gradually made my way through mashed potatoes with LOTS of gravy to "people food." You might also want to add liquid vitamins to your food. At first, I avoided using forks because I was afraid that I'd poke my flap with it. I'm still more comfortable using a spoon.

My mother was my excellent but reluctant caregiver--you will need someone to look after you for a while, and unless the VA is going to cover that it'll probably have to be family.

That's all I can think of right now, but this really is a fabulously helpful group of people.

Julia

Hi Gary,I am so you have to go through this but its not that bad as it seems.
I do know by the Cancer Group I go to quite afew have had Tongue Cancer with neck discection and they can talk better than me and I had mouth and Neck cancer.
I often look AT THEM PUZZLED HOW CAN THIS BE?
wELL i WISH YOU LOOK ON THE 21 TS.
pLEASE LET US KNOW HOW YOU GET ON.
yOU DONT SAY IF YOU have had a peg fitted already thats really helpful.


Paul

Hi Gary,


Sorry you have to go through this, and I understand your fears. I guess a lot of what you can expect will depend on how much; and what they need to remove. In my case the first to surgeries were to the "oral" tongue. If you are like me, you may not realize that the tongue you see in your mouth is the oral; and that the part in your throat is the posterior tongue. If they are removing the posterior portion you could have very different results. The first time my tongue swelled pretty badly and it was a couple of weeks before I could really speak without it being painful; but was back to work after a few days. My wife and I both have laptops, so I set up instant messaging so we could talk at home while letting my tongue heal. The second operation it didn't swell too badly, and healed a little quicker. All together about 20% of my tongue was removed and after it healed there were really no issues with my speech. I did notice that if I talked for a long period of time that I would develop a little bit of a lisp; but I think I noticed it more than anyone else.
The neck operation was a lot more extensive than I expected. The cancer had spread from the lymph node into the muscled and was attached to the nerve. They removed a couple layers of muscle and "scrapped" the nerve. I have pretty good range of motion in my arm; but after six weeks I still have substantial pain and the nerves cause weird shooting pains and twinges. I am not trying to add to your fears; the pain is not unbearable and usually a couple of Tylenol helps. My scar starts just behind the left jawbone and arcs down eventually curving up to the Adams apple. Because the nerve was affected the left side of head is pretty numb; kind of like having a shot of Novocain. This was especially irritating the first few days, because I would itch, but scratching did no good because I couldn't feel it. It also makes it tricky to shave; because you can't really feel the razor. When you combine that with the scar and new shape of the neck, it can be a bit intimidating. (If anyone can recommend a good electric razor that is scar friendly, I would appreciate it.) If you are going to go through Radiation and Chemo you should probably start looking for a good dentist as well. They recommend having any questionable teeth pulled, because after the radiation it can be very hard to extract them. I'm sure your radiation Doctor will go over that with you; I only mention it because it’s the phase I am in now.
I don't know if that helps, but I can only relate to what I went through. Depending on the surgeon; and where the cancer has spread, your experience could be very different. Keep a good attitude and be prepared for a combination of people being sympathetic, supportive or avoiding you because they don't know what to say. My best recommendation is to stay positive and stay focused on long term goals.
Good luck, and plan on meeting me here in ten years so we can both inspire someone that is where we are now.

Thanks
Mike

Hi Gary

I hope everything goes well for you tomorrow.

Keep us posted.

Julia

Hi Gary,

I didn't require surgery, so I can't give you advise there.

As Julie mentioned though, you'll need a caregiver to help you once you're discharged from the hospital. Be good to your caregiver and she/he will be good to you!

This is a great support system here and have helped myself and many others.

Hope all goes well for you tomorrow, and try to keep your spirits up before and after. Easier said than done, but it really helps with recovery!

Hang in there, and let us know how you are when you're able to post a note to us,

Best wishes, Cricket