It's been a while since I last posted. My husband was treated from July to Nov '05 for an SCC Stage IV occult primary. The cancer is has returned 1.8cm on his tounge. Biopsy was done yesterday to see if this is the primary or a separate cancer all together. Until the biopsy resutlts come back, the only thing we know for sure is they will do surgery. Don't know yet how much of the tounge will be taken out.

I know many of you have had this procedure. Can you tell me what to expect? What questions do I need to ask the doctors before he has surgery? Will Jimmy be able to eat and speak? What is normal recovery time? Will this be as painful as it sounds?

Any insight is greatly appreciated.

Thanks, Vickie

Vickie,

I think the effects depend on how much of the tongue is taken and what type of reconstructive work is done. I can tell you my story though.

I had a partial glossectomy done in February of this year. My tumor was about 2 cm and was towards the front of my tongue on the side. I had an extra cm taken out around the tumor and had clean margins (yeah!). My surgeon was a miracle worker. People who see me wouldn't be able to tell that I had the surgery--I'd have to show them all of my tongue for them to know.

I was not able to talk for 5 or 6 days due to the fact that I had a trach. Once it was removed, I could talk, but not well. I worked with a speech pathologist who evaluated where my weaknesses were and gave me exercises. I met with her a few times for a progress check and a tune up on my practice routine. The process was very helpful and I would strongly recommend it. My speech is nearly perfect now 2 months later.

I was on a feeding tube through my nose for the time when I was in the hospital. I was able to eat the last two (of 8) days. I was restricted to a soft diet. I could eat things such as yogurt, pudding, cottage cheese, chicken soup, mashed potatoes. The good thing was that the hospital I stayed at would bring you whatever you wanted when you wanted it. Eating was really foreign at first and took some work, but I was determined to get the feeding tube out before I left the hospital, so I persevered to prove to them that I could get the nutrition I needed without the tube. At home, I then slowly added other foods once I felt like I had mastered the others. 2 months out I can eat whatever I want.

I only had pain medication for 2 or 3 days (that part is kind of hazy). Later on, I wasn't on any pain medication at all. Again, I don

I would reiterate that alot will depend on size and location of tumor and surgeons desire to get adequate margin. I have had 2 partial glossectomys, the first was very similar to Aimee's for a 2cm tumor on left side of tongue back in late 2001. I spoke and ate at 100% functionality a few weeks after surgery. My second was on 3/31/06 to treat a recurrence for a .5cm tumor on back left of my tongue. One month out and I am back to 100% on speech and eating. I start radiation in a few weeks. How much margin they plan to take is also related to whether they plan to do radiation. In my case, the fact that there was a recurrence probably sealed the deal on them recommending radiation and allowed them to avoid taking bigger margin.

Aimee...thanks so much!

I'm really proud to hear you did so well. This is so encouraging and gives me something to hope for. I have been so nervous and scared because he went thru so much during radiation and chemo. I was afraid he was heading down that same road again but you make it sound like it might not be so bad.

We don't know yet how much of the tongue will be removed. Jimmy had a neck dissection last Aug. That didn't bother him that much - nothing like the radiation and chemo did. Hopefully, he will pull through the glossectomy just as well you did.

Thanks again for the inspiration! Vickie

Hi Warren! Good to hear speech and eating can be normal. We have been told radiation is not a possibility. He just finished x38 the end of Nov. We were told that they could never radiate his head and neck again. I don't understand why not unless it's because of the damage that has already done to his neck and saliva glands. I'm not sure at this point if chemo will be an option or not.

I am assuming that clearing the margin means they take all of the tumor plus a little extra just to make sure they get it all as Aimee described? I never asked that question when they removed the infected nodes from his neck, but I will definitely have to put this on my list to discuss with the doctors this time around.

Thanks for the insight. Vickie

Dear Vickie
My husband had a complete glossectomy with a rectus abdominus flap reconstruction of his toungue a year ago after recurrence after a partial glossectomy.

It was a huge operation but I was amazed with the results, My husband recovered quite well and has remarkable speech for what he has had done, most people can understand what he has to say. He also managed some pureed and easy foods such as soup and egg etc it took quite a bit of experimanation with that, however he has always had to have his peg as would be unable to meet his dietry requirements, Although he has now developed secondary cancer he has no regrets on undertaking his glossectomy as he has had about three months of wellness and he believes that was what the glossectomy enabled him to have.
Goodluck with your decision, I wish you all the best
charm xx

Hi Charm,
Thank you for the insight. The biospy results came back. It is not tongue cancer as we had hoped. Apparently, this is the primary. Jimmy goes tomorrow for a PET. If the cancer has spread to other parts of his body, they will just do the glossectomy to relieve the pain and discomfort in his mouth. If it only shows on the tongue, they will probably do a total neck dissection at the same time they do the glossectomy in hopes to stop spreading.

We have been told this is a major surgery. Our ENT surgeon that removed the infected nodes is not capable of doing this surgery so we have been referred to "specialist." We meet with him next Tuesday. Of course we are very nervous and scared.

I am worried about his ability to eat. He is still having difficulty eating due having all of his teeth pulled, radiation, and some problems with his jaw bones. They removed his feeding tube the end of January. He has been on a "soft food" diet since but was able to maintain his weight. However, over the past month he has begun to lose weight again. I'm afraid removing part of his tongue is just going to make it worse. I want them to put the feeding tube back in, but he is resisting. He hated it and doesn't want it put back in. We'll see what the doctor says on Tuesday.

Thanks again. And I wish you all the best as well.

Hugs, Vickie

Vickie, do try to convince him to put the peg back in. My husband hated it the 1st time around, but it kept him alive. With the recurance, he did not fight having the tube in and, again, it is his only means of nutrition as he has real swallowing problems and his tongue won't cooperate either. The peg is a SAFETY feature. It could save you both hours of anxiety down the road. Amy

Hi Amy,

Thanks so much for the enouragement. It makes me feel like I'm trying to do the right thing and not just over reacting. I couldn't agree with you more about this being a safety feature. Having the PEG definitely relieved the stress and worry about nutrition during the first battle and that's why I want him to have it now.

I realize how valuable a PEG is in these circumstances. He would have never been able to survive the treatment the first time around with out one. His throat and mouth were burnt so badly from radiation, he could barely speek, much less eat and drink. He went for 3 solid months with absoluting nothing but small sips of water passing his lips.

Getting enough nutrition is obviously becoming an issue again because he is losing weight. He is trying very hard to eat on his own but as I said, he has no teeth, has some problems with his jaw bones, and now this tumor on his tongue is causing him much pain. Still, he is determined to eat on his own without a tube.

Part of his refusal thus far is due to problems he had with the PEG before. I have read several posts here that a feeding tube isn't too much trouble. However, we had constant complications from his the first time around. There were constant infections in and around his stomach. After weeks and weeks of problems, they finally decided his was "malfunctioning" and tried to replace it. They couldn't get it to deflate. They jerked so hard on it trying to pull it out, that it tore his stomach and he started bleeding internally. They had to go down his throat to deflate the balloon and repair the tare before they could put in a new type of PEG. I know these kinds of problems are not typical, but I can't convince him of that.

Not knowing how a glossectomy and possible neck dissection is going to affect his ability to eat this time around, I have been trying to convince him to have it put back in. I've been telling him the advantages far out weigh the problems.

Also, the doctors have not yet mentioned themselves about putting the PEG back in. From from I've read, they usually use a temporary tube down the nose after surgery. I plan to talk to the surgeon when we see him Tuesday. I'm hoping the surgeon will agree with me and help convince Jimmy otherwise. Still, I don't know if they would if Jimmy doesn't want it.

Hope and Hugs, V

Vickie, the experience you all had with the peg seems unusual to me from what I have read, but I don't blame Jimmy for being reluctant to try it again. Maybe you could ask for a more skilled Doc to insert it. As to eating after a glossectomy- it appears from what I have read this last year that everyone is very different. John has about 1\2 of his tongue left but it is tied down and he cannot manipulate food or liquids [also most of his teeth are gone].Simply stated, without the peg or some other kind of direct to stomach device, he would die from starvation. Quite a coin toss isn't it. Amy