I had tongue cancer in 1995 and had surgery and radiation. I had a second occurrence of tongue cancer (new primary) and had surgery in December 2004. Very painful and scary and will need some speech therapy to regain my normal speech. I sound like I have a retainer in my mouth and get tired if I talk a lot. Since I

Francine,

I'm so sorry to hear that you're going through this again after your first round in 1995. I gather that you didn't have any lymph nodes removed in 1995, so this would be your first neck dissection.

Are they really telling you that the lymphedema would be an issue for the rest of your life? Many of us have had it to some extent for months after surgery/radiation, but eventually it has subsided.

Also, regarding the shoulder/neck issues following this surgery: it's impossible to know completely in advance how it will affect you, and hospitals typically have to give you a fairly comprehensive warning about some of the worst-case scenarios. In my case, it has been 16 years since my neck dissection, and I've had relatively limited shoulder/neck problems. I've had occasional stiffness and a little bit less range of motion when I turn my head, but not much more than that.

I hope the team at your cancer center can try to come to some sort of consensus about what is the best overall approach so you don't feel that you're having to decide this on your own.

Cathy

Francine, I had a modified neck dissection on just one side, which did include muscle and nerves, and after the initial swelling due to trauma, my face seemed a little round only for a couple of weeks. Since then, I can see no difference from before. I had initial numbless over quite a large area, but many nerves have regenerated. I have also regained complete strength and range of motion in the shoulder. If it was thought I needed to have the other side done, I would do it in a New York minute! Bottom line, in my case, the swelling was very temporary, and for better or worse, I look just the same as I always did, just a little older now (grin). I think Cathy has hit it on the head about the docs having to give the full warning of everything that might happen. And for what its worth, I wear my hair up because the neck just doesn't look much different than the other side and not one person has ever commented on it. If you do have the surgery, odds are good that you will look just fine when you have healed.

Francine:
Just goes to prove that we can be cancer free, but we are never free of cancer.
God bless you and don't worry about cosmetics.
Darrell

Francine, In my humble opinion, someone at your young age has alot of life yet to live. Fight this with every tool and don't look back. I don't think the lymphedema will be as bad as you have heard.

I believe you now will qualify for SSDI (social security) Because of your recurrent cancer. Forget about what you might look like going to work you can retire and do what you want.

Take care

Hello Francine,

The quality of life issues are something we all have to live with. I wouldn't worry about the swelling to much. Your body will adapt and find new pathways to drain off excess fluid.
Make your decision and stick with it. You sound very knowledgable about your condition and treatment options. You can beat this just like the first time. Ten years out is a milestone for most cancer victims.

Hoping you get good results,

Best Wishes, Danny Boy

Francine, I had a selective neck dissection and the swelling was gone within a few weeks. I did sleep with my head elevated, though, for a full two months after, which I think helped. I also have chronic muscle problems and maybe a bit of early arthritis in the shoulder on the side of the neck dissection and was concerened that it would make it worse and it hasn't.

I'm in the middle of radiation, and I know it's possible that might make the swelling worse again or aggravate the muscle but really I think it'll be OK. My doc also told me all the worst-case things that could occur before he did the neck dissection. I think they have to. But it really was very minor compared to what I expected overall.

Hi Francine; I had an extended radical neck dissection almost three months ago and now there are actually folks who are unaware that I have had surgery! Most of the swelling is gone thanks to good massage of the area and my shoulder problems are improving as I continue the strengthening exercises that the PT at the Cancer Center taught me. The long term effects of radiation win hands down in the hard to deal with category (for me anyway) but the prize we gain is more time to smell the roses. Because of my lack of margins after this last surgery, I've had to think pretty long and hard about "quality of life" issues and so far the quality is just fine.
I do wish you well as you go through this really difficult time when things are so uncertain. I hope we can offer helpful support to you as you meet this next challenge.
All the best,
Fran

Thank you all sooo much for your replies and information. Somehow I didn't feel quite so alone and I feel somewhat better about dealing with the lymph node dissection. Well, the lymph node biopsy came back positive for cancer so I'm off to chemo therapy to see if we can piss off this cancer enough to make it leave. Then they'll do the lymph node dissection on both sides of my neck most likely. I'm sure I'll be talking with you later. Thanks a million for sharing with me.