The summary: My 54 yr old husband, former pipe smoker, was diagnosed with stage four cancer of the tongue & floor of the mouth back in July of 2002. He had his teeth removed, a bi-lateral neck dissection, 2/3 of his tongue removed, an attempt of reconstruction with an arm flap, and 30 lymph nodes removed from his neck, five of which test positive. He had complications and was in ICU for 2 weeks, and a regular room for another 2 weeks. They finished the 6 weeks of radiation mid-November of 2002. He's lost over 70 pounds so far. Is living on a few cans of Boost or Ensure as he can't manipulate his tongue well enough to get anything solid or semi-solid down. His fatigue is tremendous although his blood work, including a thyroid workup, is fine. He's had difficulty breathing, at times feeling as though his throat was actually closing.
My question is back in October a CT was done as part of the radiation setup. At that time a mass was shown on right side under his jaw. "Probable reoccurance". No one every said anything to us at that time. We found out about it today as we met for the first time with an oncologist. He has had great pain in his cheeks and jawline up to his temple. We figured the pain was due to the massive swelling (lymph fluid). The oncologist ordered another Ct today which showed that the left side is different in appearance and consistency. Shows soft tissue density. Right side shows lower density. His throat has narrowed but does not appear to be in any immediate danger of closing.
My question to this long (sorry) story is has anyone had anything similar? And couldn't the difference in density just be scar tissue? Any suggestions for the swelling and pain which accompanies it? Thanks everyone.

Did doctor mentioned anything like "lymphoedema" which is typical after one had neck dissection. I still have mine 5 months after the surgery, however, it is not painful unless it gets infected.

Thanks for replying WZ. He does have swelling from the lymph fluid so it's hard to know if there is anything else going on. His ENT surgeon, although talented, leaves much to be desired in his ability (or willingness) to listen to our concerns. The oncologist read the ENT's notes out loud to us and it's evident the surgeon feels my husband's concerns are ridiculous. Even if they are, he has a right to them and the dr should take the time to reassure him. I'm not looking forward to meeting with the ENT on Thursday, not because of any bad news (I'm prepared for that) but because of feeling nervous around this dr.

Lakehouse,

Welcome to OCF...my first thought is to get on the phone to your oncologist and get a referral to another ENT...I can tell you right now - with what we go through no one should have to put up with a doctor they are uncomfortable with or don't have faith in. I switched after my radiation and the doctor's office even called and wanted me to come back. Guess the thought of missing out on all that money for monthly checkups got to him.

I don't know about doctors where you are, but you might have more faith and confidence in an ENT Oncologist. They are used to dealing with scared and concerned people. And know more of whatto look for regarding reoccurence.

When you find your new doctor have them call for your records. Or ask you oncolgist to forward them. That way you don't have to deal with it.

Good luck & take care,
Dinah

I'd loved to change ENT dr, but we don't have any health insurance so my husband is going to the VA in Boston. They are great to us I have to say. But I don't think we get a choice as to who will see him.