I wrote in a few weeks ago about my husbands tongue lesion. The 1st biopsy taken in office was inconclusive. Doctor then operated on him Tuesday and removed the part of lesion that was protruding outside of the normal tongue area. Pathologist in OR said there were no "Overt" signs of cancer. Went for post-op visit yesterday where Dr. told us it was cancer. She has now scheduled a surgery for 10 days from now to remove complete lesion plus a cuff of normal tissue around the lesion ad also doing a neck resection to remove lymph nodes. She said he is a T1-T2. She said that if nothing in lymph nodes no radiation will be needed. Does this sound like a reasonable way to proceed?

Hi Kimberly

So sorry to hear about your husband's diagnosis. It sounds very similar to what I had last year (though I had to wait 8 weeks for my op post diagnosis - very stressful!). The doctors originally thought that I was a T2 and that when they had removed the tumour I would have to have a tongue flap, but when they came to operate they found I was only a T1 and they could just remove the tumour and sew up the wound. I also had a left-sided neck dissection to remove the lymph nodes, which were clear so I did not have to have radiation - my doctor said this was really good as the radiation causes more problems than the surgery. The doctors are "optimistic" about my prognosis but have said that if the cancer does come back in the future they now still have the option of doing a tongue flap and/or giving me radiation (apparently you can only have radiation once) which is reassuring in a way.

I had my operation on 3 October and am now pretty well back to normal apart from a numb tongue and neck.

Hope this is helpful.
Thinking of you both.

All best wishes
Gwyn

Thanks for all your info. We are just concerned about the amount of tongue that they will have to remove. My husband has a management position and speaks with other managers and employees. He was hoping that maybe he could just have radiation but from eberything we have been told that would only be used if his cancer has metatasized to his lymph nodes. Good luck to you and thank you for your comments.

quote:

Originally posted by Gwyn Fraser:
Hi Kimberly

So sorry to hear about your husband's diagnosis. It sounds very similar to what I had last year (though I had to wait 8 weeks for my op post diagnosis - very stressful!). The doctors originally thought that I was a T2 and that when they had removed the tumour I would have to have a tongue flap, but when they came to operate they found I was only a T1 and they could just remove the tumour and sew up the wound. I also had a left-sided neck dissection to remove the lymph nodes, which were clear so I did not have to have radiation - my doctor said this was really good as the radiation causes more problems than the surgery. The doctors are "optimistic" about my prognosis but have said that if the cancer does come back in the future they now still have the option of doing a tongue flap and/or giving me radiation (apparently you can only have radiation once) which is reassuring in a way.

I had my operation on 3 October and am now pretty well back to normal apart from a numb tongue and neck.

Hope this is helpful.
Thinking of you both.

All best wishes
Gwyn

Hi Kimberly

I was also concerned about my speech after the operation as I am a clinical psychologist so spend a lot of time talking to people! When we thought I was having more of my tongue removed and a tongue flap I was told that this would ensure that I could still speak OK although I would not speak quite as well as before and would sound different. As I did not have the flap my speech is pretty near normal (just sound a bit slurred occasionally if I get tired).

All the best
Gwyn

can someone tell me about the Tongue Flaps I was told that it was not possible??

PAUL

Hi Paul

When I went under for my op I was all prepared to have some muscle and and artery taken from my arm and put in to my tongue to replace the bit they were taking away. I was just really lucky that they didn't need to do that after all. It seems to be a routine procedure in the department where I had my op - they told me that they do one a month. But I suppose it depends on particular circumstances whether it is possible/going to be helpful for any particular individual.
Gwyn

Hi Kimberly, I just want to say I'm really sorry for your news. I really need this forum. thanks to Gwyn I hope I can get more feed back because I am scared. My husband is also having the works done. Both sides of the neck, new tongue from wrist.It's hard to get all this. Monday at 7:30a.m. I will let you know because he is in for 7 days and I need this help.
jilly

Hi Kimberley
My dad had about a third of his tongue removed (26th Nov), and reconstucted using a flap from his forearm (+ neck dissection). His speech is far better than we expected. It is slightly slushy/slurred especially if he's tired and he struggles a bit with 's' and 'g', but is totally intellible, and as the swelling goes down it continues to improve.
But the bottom line is that however he sounds, he's alive!
Best wishes, Sara

Hi Gwyn, Thank you for telling me about the New Member area. I just have a couple of questions. Is this normal for your tongue to be numb? Will your neck get better? It must have been a great feeling to find out that your surgery was not as bad as they had told you. My husband does speak alot at work so we are really worried about the speech.

quote:

Originally posted by Gwyn Fraser:

So sorry to hear about your husband's diagnosis. It sounds very similar to what I had last year (though I had to wait 8 weeks for my op post diagnosis - very stressful!). The doctors originally thought that I was a T2 and that when they had removed the tumour I would have to have a tongue flap, but when they came to operate they found I was only a T1 and they could just remove the tumour and sew up the wound. I also had a left-sided neck dissection to remove the lymph nodes, which were clear so I did not have to have radiation - my doctor said this was really good as the radiation causes more problems than the surgery. The doctors are "optimistic" about my prognosis but have said that if the cancer does come back in the future they now still have the option of doing a tongue flap and/or giving me radiation (apparently you can only have radiation once) which is reassuring in a way.

I had my operation on 3 October and am now pretty well back to normal apart from a numb tongue and neck.

Hope this is helpful.
Thinking of you both.

All best wishes
Gwyn

Hi Jilly

I am so glad you found this site. Members here are really friendly and supportive which I hope will be helpful to you over the weeks ahead.

Apparently it is quite normal for the tongue to be numb as they have to cut some nerves during surgery; I was told that the feeling may come back over the next 18 months. It's really strange because one night while I was in hospital my tongue was very painful and I could tell that they had cut it, but after that it went back to being numb and I have felt no more pain in it at all. It doesn't cause any real problems except that sometimes I find myself chewing on it while I eat. I should have said - its only the left side of my tongue that is numb. I can't really stick my tongue out properly any more, but as my GP said that is a small price to pay!

I think it is similar about my neck. A little bit of feeling has started to come back as I can now feel my ear lobe which was numb before. I was lucky again in that my neck dissection caused very few problems as I know some people do have problems afterwards.

I think someone has mentioned this on another thread, but I found the worst bit of the operation was having a tracheostomy and not being able to speak for a few days, but fortunately that was soon over.

Please let us know how your husband gets on - I will be thinking of you both tomorrow. Won't be able to post for a bit, though, as I am away fro a few days.

Gwyn

Hi Kimberly

I had nothing in my lymph nodes and didn't need radiation or chemo. Three years later, I'm still cancer free and doing really well. People who deal with me over the phone don't even know I've had a hemiglossectomy and resection.

Hi Paul

I don't know what they might have had in mind for you, but my flap was built from a good-sized piece of my right forearm. My doctor explained that there are two ways to build a flap: to the floor, meaning that the flap will be fixed to the floor of your mouth (drastic, and it makes talking and eating difficult at best) or to the roof, meaning that it will have a more natural arch. Mine is the latter and I have no problems with eating (unfortunately) and very little--if any--trouble talking. When I was in for my last clinic visit two weeks ago, one of the speech pathologists here at the University of Michigan hospital brought in a trainee who wanted to hear how I sound. Apart from an extremely light lisp (natural in my family anyway) I sound like I always did. She said this was surprising given the amount of reconstruction I had (left side of tongue from tip to first molar, left side of the floor of my mouth, and a partial frenulumectomy--the little thingy {sorry to use a technical term} that anchors the tongue). My only talking-related problem is the occasional tongue cramp which my doctor says is basically muscle strain because it no longer has the support of my native tongue.

Julia

Hello kimberly24, So sorry about your husbands news. I think the way to go is to attack it with everything. They say oral cancer is vasculor means it is very fast growing and we need to hit it hard. Kill those cells. They spread fast. I am happy that my husband is going through rad & chemo. Chances are this type of cancer will come back if not fought hard.

Take care

jilly

quote:

Originally posted by Kimberly24:
I wrote in a few weeks ago about my husbands tongue lesion. The 1st biopsy taken in office was inconclusive. Doctor then operated on him Tuesday and removed the part of lesion that was protruding outside of the normal tongue area. Pathologist in OR said there were no "Overt" signs of cancer. Went for post-op visit yesterday where Dr. told us it was cancer. She has now scheduled a surgery for 10 days from now to remove complete lesion plus a cuff of normal tissue around the lesion ad also doing a neck resection to remove lymph nodes. She said he is a T1-T2. She said that if nothing in lymph nodes no radiation will be needed. Does this sound like a reasonable way to proceed?

Hello Kimberley

Treatment of cancer is about doing the necessary and avoiding the unnecessary as the treatment has side-effects that compromise the quality of life. So if she said, 'nothing in the lymph nodes no radiation will be needed' that's your oncologist suggesting a step by step sensible approach.

Best wishes
Vinod
( in Jakarta)