Hello.

I was diagnosed with tongue cancer back in March 2001. Since then, I have received the maximum radiation and chemotherapy treatments. Completing all treatments in May of 2001. I was cancer free for only two months and a biopsy showed the cancer was back in July. I am a stage 4 and the cancer is large on the right side of my tongue.

The next step is radical surgery. The doctor wants to take out my lymph nodes (on both sides of neck), tongue, and voice box. Reconstruction surgery for my tongue and a trek will be done also.

I am a 51 year old man and have never been scared in my life. I have been putting this surgery off since Sept and they say I better do something now.

I would like to know if anyone has been through this radical operation and the survival rate. The doctor says
he can't even say this surgery is more successful than leaving the cancer alone. He also stated he would try his best to get out all the cancer because I can receive no more radiation.

Help is very appreciated

Hi, my name is Anne. I had a radical neck disection done in September 2000. The lymph nodes were removed from both sides of my neck, 1/3 of my tongue was removed and the floor of my mouth was rebuilt from a skin graft taken from my neck. I was lucky as my lymph nodes were cancer free and I did not have to receive chemo or RAD. It has been almost a year and half now and I'm feeling 95% of what I did before the surgery. Please don't wait any longer. If you would like additional support you can email me at Youngerag@aol.com

Hi Anne. My name is Teri, my husband has been diagnoised with tongue cancer and will be having surgery this coming Thursday. They will also be doing a neck disection to remove the lymph nodes. Right now the doctor is confident we caught the cancer at a early stage but recommended the neck disection as a safe measure.

I am scared to death and have no idea what to expect after the surgery. My husband is being very quiet, I wish he would talk to me about his feelings. He doesn't even want to tell our grown children right now. He said he might tell them the day or two before the surgery. I think this is totally wrong. I don't know if he is in denial or if he is just playing the strong guy for my sake.

The doctor said they will be removing a piece of the tongue about the size of a ping pong ball. That seems quite large to me. The doctor thought with speech theraphy he will do fine but then again he said he may always have a problem with his speech.

I am concerned the doctor may not be totally honest with us. He said this is a rare disease and judging by what I'm finding on the internet that does seem to be the case.

Right now the doctor said he would not need radiation after the surgery and from what I hear that is a good thing.

I know our lives will probably never be the same after this surgery and I can only pray to God to give us the strength to get through this.

Any help, suggestions, recommendation you can give me would greatly be appreciated.

Thank you,
Teri

Teri, Hang in, now is a really tough time, the waiting and wondering. If all of the lymph nodes prove to be negative your husband should not have to have RAD or CHEMO. Truthfully, the surgery will not be pleasant but things will return to normal. I went back to work in eight weeks after the surgery. I did not have to have speech therapy, it came back slowly. Today, I sound just about the way I used to, except when I am tired. Even then it is just a slight slur of a couple of letters, s and th give me a hard time.

I can understand your husband not talking, I know I didn't do a lot because I was so scared. Sometimes I think that the only thing that got me through this whole period in my life was the strength of my husand. However, he suffered too and it was with the help of friends that we made it.

Please email at youngerag@aol.com if you would like more information or support. I'm here to help you if you want. You both will be in my thoughts.

Anne.

Hello everyone,
I wanted to update you on my husbands surgery which took place this past Thursday. The surgery took 7 3/4 hours, a very long day to say the least.

They removed approx. 15% of his tongue and all the lymph nodes on the left side of his neck. The doctor says it was confined to the tongue and had not spread. I guess we were very fortunate. The doctor still believes he will not have to have radiation although he did say he needs to review the pathology report in detail. I would say he has approx. 30-40 staples in his neck and two drain tubes. He did not need a breathing tube during the operation and so far has not had to have a feeding tube although he has not really eaten since the surgery. He had maybe three spoons of pudding on Friday evening and maybe 2 spoons of jello. He tried some apple juice today but said it hurt like a son of a gun, he said it was from the juice not so much from swollowing.

He was put in ICU the first night but then moved into "ICU Overflow Unit" since the hospital is pretty full and a more critical patient needed the ICU bed. I'm hoping he gets his own room tomorrow since that ICU Overflow is very noisey. I can't believe the chatter that goes on considering all the patients in there that weren't feeling very well. If it wasn't for the Morphine I don't think my husband would be getting much sleep.

He did develop pneumonia which I hear is very common with a neck dissection, that is making him pretty uncomfortable. They are giving him antibiotics for that and will be taking another x-ray tomorrow morning.

As far as his speech, he seems to be doing quite well considering. Saying a few words but sounds like he has a mouth full of cotton. I'm sure that is to be expected. He says it hurts quite a bit when he swollows.

I'm not sure when he will be release from the hospital, he thinks tomorrow but I doubt that very much. I think he just wants to come home really bad.

I will do my best to keep you posted on his progress. I am so glad I found this site. You have all been wonderful and it's so nice to have a place to go to write where people understand where you are coming from and can relate to the disease and feelings of others going through the same thing.

Thank you everyone!

Teri,

Wonderful news. I'm so glad all is going well. Your husband is so lucky not to have had the breathing and feeding tubes. Tell him that many people's thoughts are with him, and to hang tight. His recovery will not happen overnight. Once those staples are removed, he will feel 100% better. Keep us posted and my thoughts are with both of you. Anne.

I had a similar surgery in August of 2000. They removed about half of my tongue and did the neck dissection on one side. They reconstructed my tongue with tissue from my arm. I was only 30 years old at the time.

The worst part of the whole thing was the trach... it's kind of a scary feeling because you wake up and feel like you can't breathe. They reassure you often - but remember me when you're there... YOU CAN AND WILL BE OK!

There really was not much pain associated with my surgery - the most painful part was my skin graft donor site on my leg - but that was not anything major.

I'm praying for you and hope you'll keep us posted on your progress. Please don't wait any longer.

Take care,
Lisa

Disabled vet.....April of '97 I had a hemmiglossectomy (removed over 2/3 of my tongue) and a radical neck. Also had 38 radiation treatments along with 3 rounds or chemo and like you I was never so scared in my entire life. The surgery is invasive and certianly not a "walk in the park" but very do-able. Since you have already completeed both Rad and Chemo without a good success rate, I would encourage you to move swiftly with the surgery. You will be uncomfortable at the beginning as with any surgery, but with time to heal you will be back to your new life within a matter of months. Within in a matter of weeks after surgery I was eating ground food, and TALKING; five years later I can eat most anything I desire and you can't shut me up! I do have a slight speech impediment but am clearly understandable unless I am extremely tired and then my speech is just a bit slurred. For me, the treatments to fight the disease were more disabeling than the surgery its self. If I can be of further help, please don't hesitate to contact me. Sincerely, Donna

Terri......Good news about the surgery! Your husbands eating habits and speech will continue to improve with time. I lost over 2/3 of my tongue and although I required about six months of speech therapy, today I am clearly understood. As his mouth begins to heal and the swelling goes down eating will become less and less of an issue with him. Those first few bites of REAL food tasted so good the first time I was able to get something down, even it it was all ground up! Wishing you BOTH a speedy recovery from all of this. Donna

My mother who is 79 underwent surgery in February.
She had over 1/2 her tongue removed, her right lower jaw and right floor of her mouth. They used tissue from her chest for reconstruction and a metal plate for her jaw. This was after she had radiation and neck resection last May. She was in the hospital for a month. She is out now. Her speech is quite understandable but there is an impediment. She is eating mostly pureed food and still supplements through her feeding tube.She is in very good spirits considering everything she has been through. The doctor is cautiously optimistic that he got all the cancer.She is not sorry that she had the surgery now that it is over and says that this is easier than the radiation because it is over and she is getting better every day.

VB

Your Mom is quite a woman. I had almost the exact surgery as her. They rebuilt the floor of my mouth from the skin that was removed from my neck during the radical neck dissection. One third of my tongue was removed, as were all of my lymph nodes. However, I was very lucky and did not need radiation or chemo as all nodes were 100% free of cancer.

Assure her that her talking and eating will return to a somewhat more normal state over time. Today, a year and a half later, I'm pretty much back to my old self again.

If you want more information and/or encouragement please email at [email protected].

In my thoughts

Anne.