I have been following this site for over 2 months. I have been the care giver to my husband John who celebrates 30 years as a survivor this month.
I don't know how to stage him but he had a partial glossectomy of 25% of the right base of his tongue and a right radical neck dissection August 1979, The tumor was the size of a walnut, was poorly differentiated squamous cell carcinoma with involvement of the 2nd 3rd and 4th cervical chains. This was followed by 6 weeks of radiation.
We have had many ups and downs over these 30 years. He had two right thoracotomies done (1987 and 1996) Thankfully both lesions were benign. There was a two week period of severe hemoptysis with clots in 1999. He had bronchoscopies done at the cancer care center and at our local hospital as well as a pulmonary arteriogram but again thank God no reoccurrence. He was diagnosed with hypothyroidism in 2003. Has had mutltiple basal cell lesions removed from his face and under the right clavicle. He never had a PEG and only had the trach post op for his original surgery until now. He has been healthy and leading a wonderful productive life until Feb 2008 when he was admitted to the hospital due to aspiration pneumonia. He recovered and returned to work and our life was good again until Dec 2008. He has had 3 more admissions for aspiration pneumonia. PEG feedings were started in December. He had to have a Left lower lobectomy in Feb due to empyema and a bronchopulmonary fistula. He was on a respirator for a week during his third hospital stay in March and a Trach was done in April for pulmonary toileting. He spent 3 weeks in a rehab and has now been home since May 5. He is doing great since he has been home. He has gained 22 pounds back and is only 6 pounds away from his normal weight. He is off the oxygen and no longer needs to be suctioned. We are able to walk 3/4 the way around the block (about 3500 feet) and his O2 sat is around 94 when he is done. He is also using a stationary bike for 30 minutes a day. A speech therapist sees him twice a week.
He was well enought to get MSK cancer center in NY 2 weeks ago for an evaluation to see if any thing can be done for the swallowing difficulty. His original surgeon is still there (he is the department chair) but he referred us to someone else. They are going to do another GI evaluation and he will be seen by their speech therapist for another swallowing eval. The doctor said for now the only thing that he believes he can offer John would be a laryngectomy with a permanent trach (pending the GI and swallowing evaluation), John will have to decide which is more important to him speaking or eating. During his appointment they changed his trach, put in a smaller size without a cuff and gave him a Possamur valve which he is using all the time so his speech is back to normal. He remains NPO and on the PEG feedings.
His biggest difficulty is the inability to sleep.
He does not really get to sleep until around 3 or 4am and then sleeps in cat naps until around 11.
Sorry this was so long but I wanted everyone to know that there are LONG term survivors out there. They probably are busy emjoying their lives so you don't hear about them.