I am not the patient, but a sister and advocate. I know I am going to get this wrong, but please bear with me. My brother thought he had lingering canka (sp?) but was diagnosed with oral cancer just before Memorial Day weekend (5/25/2011). He was 59, a heavy smoker and even heavier drinker. He had prolonged back issues that prevented him from working for two years. After many tests, etc he had surgery on 7/25/2011. They removed 3/4 of his tongue, the base of his mouth and removed 70 nodes, 13 pos, 2 burst. He has a trach, and a PEG and a scar under his chin from ear to ear. The good news is they didn't have to touch his jaw bone which they had told us they would. He had a bad start after surgery because of the detox and was in ICU for 10 days. He seemed to be recovering well and by 8/25/11 was looking like a healthy younger version of himself. Labor Day he started with ear aches, that became swelling in the neck that has become headaches when laying down. The swelling is now pulling at the scar, looks like two goiters below each ear. He sleeps sitting up and hasn't started any treatment (IMRT or chemo) because of his inability to lay down for further diagnostics. He has excessive phlegm. He has not yet learned how to swallow.

Continued.......... I am reading about dissection puffiness and lymph fluid build-up. Did anyone else have issues laying down for radiation and/or diagnostics because of this fluid? How did you deal with the excessive phlegm while laying down if you cannot swallow? Sadly the DO, MO and Chemo MD think the cancer may have returned already. My brother is complaining of pain in the base of the mouth but if they removed the nerves what is he feeling? Any advice would be greatly appreciated. Many thanks to those who continue to post and share their own experiences. I go again tomorrow to see two more M.D. before a sedated CT scan on 9/29/11.

Welcome to OCF, Sis! If your brother has alot of phlegm and is unable to swallow, the nurses can use a suction machine to get this out of his mouth and throat before he would do radiation. While it is not easy to go thru radiation it is something that can be done. Having a mouth full of phlegm would make it difficult.

I have a few questions to help make it easier for us to help answer your questions.

Has the doctor given him any steroids or anything to help with the swelling?
Can your brother spit the phlegm out?
Did the doctors get clean margins?
Is he on pain meds?
Is your brother being treated at a comprehensive cancer center (CCC)?
What is the net step? radiation? surgery?

When you have time, please add a signature. It makes it much easier to get to know you and the situation your brother is in. Click on the "My Stuff" tab along the top. Then on the drop down menu click on "Profile". Scroll to the bottom and type in the white box.

Hi there and welcome! - christine's questions are right on. Knowing answers will help, try not to worry too much yet - The swelling could be many things not necessarily cancer - possibly infection? Lymphedema? Have they done a biopsy of the area? Laying down and the headaches - I wonder if it's related to pressure from the swelling? talk to the Drs. Share your concern. Push to have them start the chemo and rads, soon. Please keep us apprised of what's going on. We're here To listen and help. Take care!

My husband had a terrible time controlling pain until we got on a high enough dose of Gabapentin which helps with pain from nerves damaged/destroyed. The doc explained that the brain still receives messages from these nerves. Even the highest doses of Fentanyl and Morphine didn't help.

Jim also had swelling right after surgery and it was from lymphadema, massage helped soften the area up and get those fluids moving. His speech therapist showed me how to massage correctly. Hope this helps!