Hi everyone

My name is Lily and my husband has been diagnosed with tongue cancer again.

We first found out about on July 6th and he had his first surgery on July 15th, 2005 wher part of his tongue was removed on the right side.

He did awesome for the first 2 weeks after surgery but then his tongue got very swollen and infected. He has been on steroids, pain killers (all of them) and every possible anti-biotic in the world.

This past Sept 15th, they biopsied his tongue again and found a lot of scar tissue and an infection. They drained everything and cleaned it all out however, the pathology result came back with carcinomma in-situ and now he will under go radiation in about 2 weeks. The surgeon thinks this could be field cancerization of the whole tongue.

He has not been able to eat any solid food since June and has lost about 30 lbs. They are recommending a PEG tube while he goes through his radiation.

He has never smoked in his life or chewed tabacco and he is only 36 yrs old.

We are scared and fustrated with this whole process. We are meeting with the oncologist tomorrow (Friday) but upfront I know they are recommending the IMRT.

I have researched everywhere about tongue cancers but have found very little information of help to me.

Can anyone here help me/us?

What can we expect from the radiation?
What if the have to remove the whole tongue?

I am just very scared and feel I am useless and helpless to him. I want to do everything I can to help him through this process.

Anything anyone can help me with will be greatly appreciated.

Thank you
Leze

I am sure that there will be many posts following mine to offer help. But if you would like to talk with me on the phone since we are in the same neck of the woods, feel frree to email me and we can set up a time to talk. I will spend as much time with you as necesary to answer your questions.

Hello Lily, welcome here, sorry that you are having to deal with this! There is a little search button at the top of the page that you can search the forum with. We have had lots of discussion about radiation. The type of cancer he has is probably Squamous Cell Carcinoma. Radiation can be pretty darn effective in stopping this kind of cancer. He may be able to have radiation without surgery to his tongue. Radiation side effects are slightly different for each person. He will likely have fatigue, sore mouth, some difficulty swallowing. Usually the sense of taste is affected but many recover that quickly. The treatments are painless and fairly quick. He will probably be offered chemo drugs too. They may cause some side effects too.

If he has lost that much weight already, a PEG tube is probably a good idea.

This is a scary time I know, we all feel a sense of helplessness. The thing you can do is be certain he is being seen at a comprehensive cancer center. We will be here for you as support and to answer questions.

Take care

Brian

I will take you up on your offer. I have sent you an email already.

Thank so very much

Mark

Indeed, Scott had Squamous Cell carcinoma and a part of his tongue on the right side has been removed already.

The new cells they have found cannot be treated surgically and radiation is basically our only option right now as it offers localized treatment to the area affected.

Scott will need a PEG tube, he cannot afford to lose anymore weight and he needs to be strong to recuperate faster.

I will do a lot of research on this site tonight as our appt is tomorrow and I want to be prepared with questions and information so it will be a long and sleppless night for me.

Thank you for your help and support.

sorry to hear bad news leez, remain positive and pray that everything will turn out o.k lifes a bitch but u will gt there. prayers and hugs your way take care best wishes maz

Leze,
I'm so sorry to hear about your husband. My dad has tongue cancer and is currently going thru treatment. Yesterday would have been his last day but he's had a fever since Monday afternoon and his white blood cell count is low and is in the hospital. He was going for radiation 2x a day and chemo once a week. He does have a PEG tube. Everything seemed to be going really well until the last two weeks. Mucus formed in his mouth (this he said was the worst), the pain got worse, and the feedings began. Treatments are postponed until they figure out what's going on. Hopefully they'll start up again Monday. Good luck tomorrow. Be strong and you'll be in my thoughts.

Tracy

thanks Maz

I am trying so hard to stay positive. its not easy but I can't afford to give up.

keep us in your prayers

Tracy

thanks for your response.

I am patiently waiting for 3pm to arrive as that is our appt time to the oncologist.

My husband had a problem with salivation after his first surgery and he used a suctioning machine which helped him a great deal.

Everything is so scary to us right now. We thought things couldn't get worse.

I will come back with a lot more questions today, I am sure but at least I have found this amazing place that has already given much information and hope.

Please tell me more about you dad's cancer. I am praying that he gets better to finish his treatment and Tracy, I know what you are going through. Its not easy but we'll get thru it.

Thank you for the info and please keepme posted on your daddy.

Lily

Lily,
Just a note hoping your husband's appointment went well.
Sending good vibes,
Tonya