Hi There

My name is Sammie and I am currently looking after my husband who had surgery 3 weeks and 3 days ago (sorry am not clued up yet on the official lingo)
We were told that he had stage 2 squamous cancer on the side of his tongue, but during the operation the surgeon came out to give me an update and I was told they had found that the "C" was on the base of his tongue too, they removed approx 35% from the base of the tongue, and some off the side and he also had a partial neck disection, I dont know if that discovery upgraded his diagnosis...we were never told.
His lymph nodes come back negative but his neck developed an infection and they reinserted the neck drain for another week (now removed)but his neck is as hard as rock on that side, has anyone else had this? what can we do to try and soften it up?
I have a million and one questions but I will not wear out my welcome and post them all here and now!
Thank you very very much in advance
All the best
Sammie

Welcome to the board. Your husbands story sounds about like mine. My neck too is scared down, numb and some shoulder weakness, all to be expected I guess. Any post op infection probably made it worse. Hope he does well.
This site is a good place to ask questions, I am learning too. Edd

Hello, Sammie.

This is no time to evaluate your husband's condition. The name of this game is Time and Patience, unfortunately. The hardness you feel is most likely swelling, and that will recede. At three years out, my neck dissection scar is nearly invisible and my shoulder is as strong as the other side and has complete range of motion. But it was certainly not that way at three weeks out (grin). When his infection has resolved, I would suggest that you seek physical therapy for his shoulder and arm on that side. There are some very simple exercises that help tremendously. I saw the PT just twice and then did things on my own. Sammie, your husband will be much, much better than he is now. You will just have to wait a bit. Hard to do, I know, but the body does a remarkable job of healing, given time.
Joanna

Joanna,
I was not trying to evaluate my husbands condition, just get him some answers to his questions.... computers and him do not go hand in hand (he found the "on" button last week!) we are from the UK but he was diagnosed while in the USA and had his Op here.
It has been 5 weeks or so from diagnosis to now with the operation in between, my head is still spining from it all..... and the questions........they keep popping up every 5 minutes! as you can appreciate apart from the doctor the internet is our only source of information.
Any answers are very truly appreciated
Sammie

Hi Sammie, The "hardness" is a common post treatment observation. It is normal to have this sensation. During the neck dissection some of the underlying tissue and fat is removed. This means that the skin is now lying directly on the muscle and firmer structures of the neck as well as some scar tissue.

My guess is that they will be talking to you about radiation and possibly chemotherapy. You are welcome to ask questions here anytime. At the forum main page there is a small print "search" which if you click on you may search the past forums for specific things. If you have thought about it, we have probably had a post about it.

Take care

Many Many many thanks for that! I have just read your post out to Richard and he smiled and said thank-you
All the best
Sammie

Sammie,

I will be 3 weeks post surgery tomorrow and had very similar circumstances as your husband. My scc was on the side of the tongue, however it was Stage I. I had 30 nodes removed and they too, were negative. I didn't have 35% of the tongue removed, but it was approximately 5 cm.

As far as his neck is concerned. If the doc says he no longer has infection there, then this is probably "lymphedema". I too, am swollen, but did not have an infection. I thought I did and I went to the emergency room and was put on Keflex for about a week. Right now I have swelling and hardness adjacent to the incision and I was told that this is normal and it is "lymphedema". This is an accumulation of the lymph fluids in the area that is not being drained anymore as the lymph nodes are no longer there. I intend to discuss this with my physical therapist tomorrow who is also a lymphedema therapist. She spent some time last week massaging the area and some of the swelling went away. I am hoping that she will instruct me in how to do this massaging myself. I suspect that this will be a continous problem for the rest of my life, but certainly one that I can live with. It is a small price to pay, considering the alternatives.

I will let you know the results of my visit tomorrow and we'll see if this will be helpful for you and Richard.

Since his nodes were clear and they got it all out, you guys have a lot to be thankful for. It seems to me his prognosis is great. Mine case is so similar and I consider mine to be 100% successful.

Don't hesitate to ask as many questions as you have. We are here for you and someone surely will have answers for you. Richard is lucky to have you.

Jerry

For those of us that have had neck dissections, lymphedema is a shared reality... but it is transitory in nature. About 16 months postoperative, mine went away completely and that was that. The accumulation of the lymph fluid right now has no developed pathways to exit the area. But through massage etc. this fluid build up can be reduced and aided in its disbursement through the surrounding tissues. Eventually the body develops new pathways for the fluids, which continue to be produced, and the nodes in your upper chest and under arms start to pick up the slack. It does get better with time.

Hi,

It is good to know the official name for it now I can research it on this great site.
Unfortunatly the hardness is throughout the right side under the jawline, its like a rock! but Richard is very upbeat about that issue now he knows what it is!
All the best
Sammie

Sammie,

I sure would like to know if the doctor feels that this is lymphedema. When will you be seeing the doc to find out if he/she agrees that it is lymphedema? It's very important to rule out any other problems.

If so, as I mentioned before there are therapists trained just for the treatment of this problem. As you know, I am using one now.
It is making a tremendous difference in how I feel.

Jerry