Hi everyone. I am new to all this. I was diagnosed with tongue cancer in the middle of planning my daughter's wedding, which was supposed to be in July. At about the same time I found out about my problem, my daughter's fiance found out his father had brain cancer. Therefore, they moved the wedding up several months to make sure his father would be able to make it to the wedding, as he is not electing to receive any treatment for his cancer. My ENT said he could go ahead and do the tongue surgery and then the neck dissection after the wedding so I wouldn't have a bad scar on my neck for the wedding. So three weeks before the wedding, I had 50% removal on the right side of my tongue, my right tonsil removed because he said the cancer was close, and some of the underside of the tongue removed. I didn't have a scar on my neck for the wedding, but my speech wasn't so good, which for some reason I thought I would be able to speak normally in three weeks! It will be six weeks in a few days since that surgery, and I still feel like my tongue is swollen (but not as much)and can't speak that well and can stil see "dissolvable" stitches that seem to go down my throat. Two weeks ago today, I had a partial neck dissection and all the nodes were negative, so my ENT said I will not have to have radiation but see him on a monthly basis. I am able to eat soft foods pretty well and swallow on my left side. My neck is a little less stiff after two weeks, but the past weeks I've been getting these tingly pains in my neck and right side of my upper chest, which last on and off most of the day and night. My doctor told me "you're going to be feeling all kinds of weird stuff for a long time." I was just wondering if others had this problem after surgery. The scar on my neck sticks out quite a bit - wondering if that is normal for two weeks post op too. I stayed two nights for the tongue surgery. I was only supposed to stay one night, but I couldn't swallow water, so was kept another night. The doctor acted like he couldn't believe that - he was expecting me to be eating soft foods by the next morning. When I had the neck dissection about three weeks later, I was kept over one night. I know my doctor is a good surgeon, but when I ask him questions about healing, he seems to tell me something different every time. One time he said it would be about 6 months, and my speech would be normal; then a week ago, he told me my speech may never be normal or my tongue may always feel swollen. Sorry to go on and on - I know a lot of you have had such a very hard time - my problems probably seem very minor, but I can't seems to find answers anywhere else (especially from my doctor)

Hello Linda

Things will improve with time. Cancer does seem to have a way of turning up most unexpectedly! Hope the wedding went well despite the speech problem. You will find much support from members who have travelled the road you are on. Don't be afraid or shy to ask whatever's on your mind, we will try to help.

Best wishes
Vinod (in Jakarta)

Dr. Joshi,

The wedding went very well, although it was rushed a few months and my speech wasn't so good. I know I'm probably expecting too much too soon. I've had two C-sections and they were nothing compared to this oral cancer thing. My husband has scheduled his vacation in less than two weeks, and at this moment I can't even imagine ever going on vacation and enjoying it, so I was really hoping to feel better by then. I guess I will just have to wait and see.

thanks for responding - Linda

Hi Linda, keep slapping the cream on the neck, mine looked terrible for a long time, 18 months on looking good, speech is coming on well, I was very swollen for a long time, keep us posted how you are doing. BIG BEAR HUGS

I also had tingly pains for about 6 months after surgery regularly. On occasion even now I wake at night with either a tingle up one side of my face in the cheek area or feeling as if my chin has gone dead. I literally have to rub my chin with vigour to get rid of the numbness as it just feels as if it has no circulation.

Hang in there Linda - there are lots of stories on this site which will inform you of the stages you may or may not go through with treatment. Being informed help lessen the trauma when it happens.

Hi Garance
Glad to hear you say your neck looks good. Mine too looks good apart from the broken veins. Is anyone else sprinkled in broken smalll spider veins in the treatment area?

Mine is quite bad on side of my neck to cleavage where I had extra treatment with some evidence of broken veins starting now on the other side. My face though so far is free of them. Just a few minutes in the sun (not sunbathing just getting to the shops for 5 minutes) or near the cooker can bring them up even more. Just wondered if anyone else has had this problem.

Ordinary foundation like Max Factor Adaptive and a cover up stick is good for special occasions or a low neckline. But I am curious how many of the rest of you have these spider veins in the radiotherapy area.

My feeling is that because I could never stay in the sun for long ever before, my skin was more susceptible to the rads rays.

Hi 18 months on and my neck and jaw are always very hot, I tend to wear a light scarf, as I find the sun makes it very hot, Chelsea flower show last friday, I wore a huge straw hat and sun glasses, I think everyone thought I was a celeb'
I would not bother trying to put foundation on as you need to get loads on cream; people cannot image I was cut from ear to ear.
Pauline I don't have viens, just a lump under the chin, never had much of a cleavage. Treated my self to a load of necklaces, which I wear rather than hiding the neck. Big Bear Hugs to you girls

Hi garance and Pauline,

I appreciate your replies and experience that you have had. Pauline, did the tingling pains get any better after the first couple of weeks? The right side of my neck is pretty much numb and my outside ear is completely numb (which the doctor said the numbness in my ear might last a year) and I thought maybe the tingling pains were some of the numbness trying to wear off in certain parts of my neck and chest. The pains aren't quite as bad or often today, so maybe it will get better soon? (fingers crossed).

Garance, is there a certain kind of cream you use that is helpful or soothing? My doctor didn't recommend anything, but it seems like something might help.

I haven't had to have radiation so far. I am so grateful for that - it sounds worse than surgery! I'm glad you both seem to be recovering well. It sounds like an awful experience to go through.

Thanks - Linda

Hi Linda re the Rad treatment, no lipstick as this has lead in it and no creams before you daily for treatment, however when you go home get some good cream, I am sure that they will tell you what to use, I did not use the cream they hand out in England, I used a French cream which was used during the war for burns, and they use for rad treatment in france; I scaled my hand in France about five years ago and this cream was wonderful; The Doc used to ask me how I felt, I said as they I have been hit with a cricket bat on the side of my head, I had high sounding noises in my ears, like an old fashioned wireless. As I had part of the base of my tongue removed it tended to flop on one side, so I spent my time pointing the end like a child in order to get the muscle working, also this helps with speech. Please give us an update how you are doing. BIG BEAR HEALING HUGS