Can anyone give me information with regard to a surgery to remove cancer on base of tongue which will require spliting the jaw? I'm curious to know how bad (or good) the procedure is, recovery time, etc

Sorry to hear about Mike's recurrence. Mine came back almost as quickly as his did, but it's now been 20 months since that surgery and no third time so there hope that this surgery will get it. My understanding was that it's pretty standard to split open the jaw to take out a tumor at the base of the tongue. They saw thru right at the midpoint of the chin and then open the jaw up and out. IMO the actual procedure will be harder on you since you will be awake and worried and Mike will be unconscious. Plus afterwards Mike will be getting drugs and you won't.
I thought the jaw surgery was "easier" than radiation and chemo in terms of recovery but that's because the surgeon was able to just close my jaw back up with a titanium plate and screws. Some OCF posters have had to have portions of the jaw removed or even their whole jaw which is a whole different story. I was in the hospital for 10 days after the surgery but it was a combination of splitting the jaw, a neck dissection, grafting a flap to fill in the base of my tongue from my wrist, grafting skin from my thigh to replace the wrist flap and a traech tube put in. It took my ENT and a plastic surgeon 8 hours playing "tag team" to do it.
But the surgery did get the recurrence so it was worth it.
Charm

Thank you Charm for the information. I kept telling myself that it can't be as bad as it seems and I told Mike that I didn't really see any complaints on here as far as the jaw splitting goes, only the radiation. That seemed to make him feel better. Can you tell me about eating, talking, etc? It sounds like you've been through hell and back. Here's hoping you never have to deal with it again!

In comparison to some here at OCF, I'd say more like Purgatory than Hell. The jaw splitting does sound worse than it is but it's not a walk in the park either. My entire left side was numb for over a year and I still need to do jaw stretching exercise for my trismus.
Eating and talking will be dependent on how much of the base of the tongue they need to take. The mobility of the tongue is a factor in swallowing. Individual results vary but most can eat and talk. I have a palate drop prosthesis which lowers the roof of my mouth so my tongue can touch it to improve my speech.
Actually Mike's surgeon should be able to give rough parameters. Mine warned me going in that I was likely to have difficulties if she had to cut more than half out (which she did). Plus very few people here ever get radiation to the same place a second time which I had to have due to the pathology report. So Mike's chances could be good. I do recommend getting the doctor primed to give a prescription for speech and physical therapy afterwards. Both helped me tremendously in recovering.
Keep the Faith
charm

Dorety

Sorry to hear Mike is having to deal with this disease again.

I had my jaw split in April 2007, so the doctors could access and remove the tumor on my tongue and floor of my mouth. When split the doctors open the jaw up like a door, close it as Charm said by securing it back together with some plates and screws. For me, the jaw split was no where near as difficult and complicated as having my mandible removed and reconstructed with bone from another site. Following my jaw split, even with so much of my tongue removed, I was able to eat soft foods 4 weeks after my original surgery. I also had a neck dissection from ear to ear and a nerve removed from my neck, so the left side of my neck and shoulder has been numb off and on since.

Things turned very ugly for me following radiohterapy and chemotherapy. Up until then, my recovery was excellent.

Best wishes to you and Mike

Karen

Thank you both for all of the information. It has helped me to add to the list of questions that I have for the doctor tomorrow and has made me feel better knowing that you guys have been through it and still feel that other things were worse. I don't know yet how much of Mike's tongue will be removed, all I know is the doctor said the tumor is the size of a cherry....which to me sounds big when comparing to the size of a tongue but I could be way off base. I guess I can stop torturing myself after tomorrow. Time for a Xanax and a glass of wine so I can shut my mid off for a little while!

OKay, Mike is having surgery on the 14th of December. He will have part of his jaw removed and replaced with a plate, he will have atleast 50% of the base of his tongue removed (maybe more once she gets in there), he will have a graft from his wrist to replace onto his tongue and some blood vessels removed from his neck (where he previously has his disection) and placed in his tongue. Feeding tube will be inserted on the 13th of December and will remain indefinitely, he'll have a trach until he leaves the hospital. We had to tell our kids today that the cancer is back and explain this surgery to an 11 year old and a 12 year old, UGH!!

His biopsy reads: Invasive poorly differentiated non-keratinizing squameous cell carcinoma.....This just sounds ugly

Dorety

The surgery worked for me although I did not need a plate afterwards as there wasn't any cancer or radiation necrosis on my jaw. The wrist graft worked very well for me also.
Since Mike is going to have a feeding tube in two weeks, my advice is to EAT, EAT and EAT everything he loves the taste of, everything and anything he wants. Fattening, sweet, whatever, just do it now while he still can. Just my opinion.
Charm

June 26 2006 my husband Johnny was diagnosed stage 4 squamous cell carcinoma base of the tongue. On 7-3-06 he had a 9 hour surgery they removed 1/3 of the base of his tongue, 18 nodes 3 were positive. Following surgery he had 30 radiation treatments as well as Erbitux.June 23 2010 during his regular checkup a new tumor was found. On 8/23/10 he underwent 18.5 hour surgery to remove the tumor, nodes(0 pos.) and Epiglottis/Tongue reconstruction with free radial forearm flap on 8/23/10. The surgeon sent 18 frozen sections to the pathologist during the surgery. The day before he was sent home we were told the pathologist made an error and one of the margins from the back of his mouth had microscopic cancer cells. He was scheduled to have cells removed, but 4 days prior his CAT scan showed a unruptured aneurysm. Finally on 12-6-10 surgery was finished. He has done very well. He passed his swallow test 3 weeks after the first surgery. His doc wants his treach to stay in until he has a PET scan done on 2-3-10. His energy level is low and his moods fluctuate. Overall i'd give hin a 7 outta 10.