Hi everyone,

My name is Michael 43 years old smoker for 20 years about 1/2 pack a day. quit drinking since 15 year ago. and no one in my family have any type of Cancer. But on July 15 2012 I was diangostic as Tongue Cancer 2nd stage. I spent alot of time try to findout what is my best treatment offer. went to USC ENT. City of Hope, Loma Linda Proton center, and Ent specialist suggested by my family Dr.

All the Dr. told me to have surgery and remove it. I try not to do it since I will lost 3/4 of my front tongue. but every Dr. told me the same, and seems like if Radiation along will not work, and will be more damage to myself then surgery.

So I had the surgery done by Dr. Kokot in USC. because he was the one with earlist date for surgery. and I kind of like the name USC...

anyway, the surgery went will, I was in ICU for 4 days, then sent home on the 7th day. at the begining my tongue was swallened very bad, can not help drewing all the time, but I was able to speek on the 1st day. not clear, but my family manage to understand me will. (I love my family)

to make the free flap the Dr. remove skin from my left wrist about 5X5 inch and the artery vain about 1 foot. and make up what they remove from my tongue ( because if I do not do that i will have problem talking and eating.) the new flap look very funny and swollen. but as the day goes by it is much smaller now.

Dr. also remove some of my left lymph node, and he did not find any bad lymph node so he stoped. my neck is still very swollen after the surgery. ( it is been 2 weeks now) and kind of deform, but it is ok.

after one week I went back to see my Dr. to see the reports, and he told me that surgery looks good, and he got everything out, with + clear margin. here is the problem:

due to the size of the tumor, he suggest radiation anyway. the Tumor is 2.5x2.5x3.5 cm. he said because it is deep, and recurring is greater so he feel safe if I take radiation treatment.

ok, I kind of not wanting the radiation treatment. and can someone give me some suggestions? and what do I need to do to monitor if my cancer return?

Thank you very much.

You can and should for yourself get another opinion but I would imagine you are going to hear the same recommendation as your cancer (HPV- SCC) has a nasty habit of recurring.

Welcome to OCF! Go to a major cancer center for a second opinion. You dont want to play games with this. Get it the first time and leave no doubt about it returning.

Thank you. I am trying to get as much information as I can. My family Dr. also told me the same about getting everything at the first time. and make sure it wont comes back.

PS. my cancer is not HPV. do not know why but just got Oral Cancer. HPV normaly would be at tongue based. and react will with radiation, my was front tongue on the left 1/2 and reach to the mid tongue.

Dr already confirm that he remove everything with nice clear margin. but he said that deep tumor have greater chance of return.

I will meet with my Oncolagy on Monday, and will ask more detail on how he would target my radiation treatment.

Welcome to OCF, and sorry you are here. So far you've received great advice. A second opinion and most likely radiation. You don't want to join the "recurrence club", so hit it hard now. We are here to help you get through this, so ask questions and keep posting.

Thank you

I just want to add my welcome. Your story is very similar to many on this forum so along with all the great advice you've already received, I'm sure you will have no problem getting answers to any questions. Stay strong.

Thank you David!!!

Welcome, Abo,
I have not started treatments yet, so as of now, the best advice I can give is to spend time reading as many of the posts on here that you can, even if it takes a few days to do it. You will learn so much, and as others have said, knowledge is power. You will also learn very quickly that you are not alone, and you will be able to take advantage of others experience and knowledge. To use only a few cliche's, Follow your gut, question authority, and take it one day at a time.

Honestly do what they are telling you... Radiation is hard and horrible but it gives you the best chance of it not coming back. With a tumor that size there could be microscopic cancer in your nodes chances are one will blow up layer and you may end up with a recurrence.

I had very similar tumor size. My dr. Did everything up front. It wasn't fun but so far so good. Though there are no guarantees. Take care

Ok, saw my radiation Dr. He now suggest rad on both side because it cross the mid tongue. And sure will be dry month for long long time. Any suggestion on delay of rad treatment? Can we wait on it? Or we really have to start within 6 weeks?

Welcome, so sorry you have to be here.

Being a smoker is most likely what caused this cancer if it is HPV- and unfortunately as others have said, it is harder to treat and has a high recurrence rate. It also is very aggressive. It is great news that your surgeons were able to remove all of the tumor as well as get clear margins. You are definitely on the right track. That being said, my advice, for sure get another opinion so you are aware of all the options available to you, but also I would not hesitate whatsoever on treatment. You just don't want to waste any time or make any sort of compromises with your health. If you decided against treatment, and if it came back, you wouldn't want to be left with any regrets about not doing everything you could for the best possible outcome. Everyone here has either been through it personally or has cared for someone who has, and we can all help you get through it.

Best of luck and please keep us posted.

Hello Michael,
My mother-in-law had 1/2 of her tongue removed and some of the lower base of the right side in March 2010. She was told that they removed everything plus a good amount to avoid reoccurance. Therefore no additional medical treatment was needed.

May 2012 she noticed a lesion on her cheeks and gums. She went to the dentist and was told to see her oncologiest. The cancer on her cheek muscles was the size of a marble. Her right lower jaw was partially "eaten" by the cancer. 10/10/2012 in Asia she had another radical surgery which was partial removal of her lower jaw and reconstruction. Her cheek muscles were scraped up to the point allowed as to not reach the skin. Because it was detected late it was considered T4A (Tumor that is locally advanced but surgically resectable and therefore salvageable). It still salvageable by radical surgery, radiation and chemo.

Looking back, I wish the did the radiation. May be she should not suffered the second surgery. In my opinion listen to the doctors and do the most aggressive step offered. Better to do it now than later when it has progressed.

My thought and prayers are with you. God bless.

Does anyone know how to massage neck due to removed nodes? My neck is still bulky and wonder how to help getting smaller faster.

Scar management nurses recommended to my wife to massage the scar area with bio-oil and a silicone based gel which you can purchase from your nearest pharmacy.

both have done wonders and works a treat. the tip is to make sure that the scar tissue dosent go hard but remains soft.

Michael

Get the radiation. You will regret it for the rest of your life if you do not and the cancer comes back. You are young and it is your first dose. Think risk benefit analysis here. The smart money is on the radiation unless you want to join the recurrence club or enter our little Radation Olymphic for most radiation. I advise against that.
Listen to your doctors here ans ZAP that cancer

Charm

Agreed.
When you start the radiation make sure you don't have ANY oil on your neck area. Use it until then though.
Please don't wait on this. It is very aggressive.
Kathy

Hi there my advice with regards to lymphatic massage is go to a professional once or twice and have it done. Then you will know how to do it properly. Good luck!