Hello, my name is Donna. My mother has just been diagnosed with tongue cancer, stage 2. The doctor at Univ of Penn is going to remove part of her tongue, the lower end. Going to do a skin graft and left and right neck dissections. He said she will be in the hospital for about 5 days and then come home with a nasal feeding tube and a temp trach. I am going to be her caregiver-the majority of the time. I am trying to help her come to terms with all of this. One chief question she keeps asking is that if they remove 20-30 nodes out of each side of her neck what will it look like after? She thinks she is going to sound terrible with a horrible speech impediment for the rest of her life. My mother is a 63 year old, vibrant, beautiful woman on the inside as well as the outside. She is not a vain person but she is frightened that she may look drastically different....can anyone help me with this? I feel so overwhelmed I am not sure what I am writing is even making any sense or coming across as I hope it will. I want to help her and I just don't know how.

Donna,

Hello and sorry to hear all you are going through ..you have come to the right place for support and answers to your questions, as far as what the neck will look like ..back in feb they removed 32 nodes out of the left side of my neck .the incision was ear to chin ..but in a crease so almost looks as though it was there people who didn't know me before dont realize it with my hair and even those who did say what a remarkbale job..looks like a crease or a wrinkle ..however I tell them i am to young for wrinkles LOL. that side of my neck is somewhat thinner. I also lost 25 % of my tongue I have a slight lisp specially with certain letters ,again people dont know me cant tell..even those who do say it is fine ..of course I am self concious .I was talking in recovery room ( or course i LOVE to talk ) ,You can do speach therapy and there are people here who have lost a lot more of there tongue and still speak . So may you find the answers you are looking for and just know that we are always here !

Hello Donnarose
I am about to have this treatment. But I have read a lot here. There will be some disfiguration, but they try to minimize it. A lot of people have good results scar wise. As far as the speech, they will send her to speach therapy if needed. It depends how much of the tongue is removed. All these thing can be overcome. And a small price to pay to stay alive. Some have said that if they did not point out the scars they would not have noticed them. Naturally they will look the worst right after surgery. We, ourselfs are super critical of ourselfs. When we look in the mirror, we are looking for the scars. Most people do not look for scars on other people. Relax, she will not look drastically different. Someone who never met her before will probally not notice anything. Wishing you the best, Petey

Hello Sharlee and Petey.
Thank you. Right at this moment I am feeling overwhelemed by the honesty and courage you share. I feel so blessed to have found this site and everyone here. I feel so scattered brained, none of my thoughts have any real consisentcy, and jump in and out of my brain-hopefully when this all sinks in and I begin to feel more stable-everything will return to normal. Petey-good luck, know that I will be praying for you. Well, for everyone here. This is so amazing.

Donnarose - Tell your Mom not to worry about the lymph nodes. My son (Stage 2 SCC) had one sixth of his tongue removed and 48 lymph nodes. His neck looks just the same as before the surgery except for a hardly noticeable scar which looks the same as what Sharlee describes - a crease in his neck. The swelling has almost completely disappeared and he is only about 4 months post treatment - a little thinner but just as handsome as ever! The real beauty of course is the one that comes from inside and your Mom already has this! I'm sure she really appreciates your being there for her through all this. Just keep researching and asking all the questions you can think of here, and with the doctors. Try to stay positive, for her and for you, too.

Thanks again!

Hi Donnarose,
I was treated at Univ of Penn and just posted on your other string in the General Section. Please go there and read my post.

Take care,
Eileen

thanks

thanks

Donna ,


Just realized you said your mom was having both sides done ..I dont know if she has a sense of humor ( somthing I think you need during this really helps) But tell her she is gettin like a neck lift ! I told my surgeon ..geesh you shoulda just done the other side I woulda looked good ! LOL. The one side is a little thiner then the other but not like extremely noticeable, not if you dont know me .besides they keep telling me ( which I knew but always critical of ourselfs) No one is perfectly symetrical. ANother thing no one pointed out and I just want you to be aware of ...My left lip droops a little ..better now then in begining . Some of the nerves get annoyed , damaged , and sometimes removed. Mine my come back it may not , people tell me not noticable..again to me it is . One surgeon in boston told me ( i went for 2nd opinion on rad ) That it is barley noticable and that many people have things like that without surgery or illness . That was 6 weeks out and she also commented on the talent of my surgeon and the scar ..she was amazed he got 32 lymph nodes out of that SMALL incision . Isnt small to me , just not really noticable either and only gettin better ! So positive thoughts,,It suxs it really does, but worth it for your health and it isnt unbearable, I just had my tonsils out and i tell ya I think that was worse ....That is a horrible operation if ya ask me !! LOL..good luck I hope I have answered some of your questions !! And believe me Your mind will run a mile a minute and you will lose your train of thought ! NORMAL. PLease keep us posted and please know that we are with you through this and (((((HUGS))))) to you , your mom and you r family !

Shar

Shar...lip weakness.....Mine was weak too, and it made me so sad, bec. I love to smile and I was disappointed about the lip. My dr. said it would definitely come back...to be patient..and do you know what? It did! slowly, without my noticing it. Be patient. I also did lots of lip exercises and fish lip shapes, trying to stimulate it. I have no idea at all if that helped or not. It is normal now, exc. for the slightest bit of weakness when I try to make a monster face, which is not a necessary part of life.