Hi,
I am the wife of someone who was recently diagnosed with oral cancer. I don't know the specifics of the cancer, all I know is that they found a tumor along the right side of my husband's tongue and 3 days later we were in for surgery. The first surgery, (July 1st) they removed the tumor/some lymph nodes, took some of the neck muscle, pulled it up and attached to his tongue in order to form a reconstruction. Five days later the flap failed and we ended up in an emergency surgery to remove the flap and cauterize his tongue so that they could control the bleeding. Disheartened, they sent us home to recoup for 5 days and then had him back in for a third surgery (July 14th) to try another reconstruction, this time taking tissue from his forearm to create a flap. All seems well and we were sent home today. Poor guy has had a tracheotomy and feeding tube (the kind through the nose) in the whole time. Trach came out just a day ago. We have an appointment on Monday July 25th for some swallowing tests to see if the feeding tube can come out. We also have future chemo and radiation treatments, since some of the lymph nodes they took out tested positive for cancer. So here are my questions for those of you who have some experience with all of this.
1.Are these two surgeries commonplace and did they perform them in the right order, given the fact that the second surgery was more successful?
2.When the feeding tube is removed, what can we expect in terms of what type of foods he will be able to first consume? And has anyone had complications from being reintroduced to foods after this type of reconstruction? (Half of his tongue was reconstructed)
3.I am also curious to see if anyone is suffering from hairy tongue due to the nature of the flap and where they took the skin from. (My husband is a hairy guy.) How do you combat/take care of this?
Thanks in advance to any and all advice/suggestions/ words of wisdom.
Many happy thoughts to all.
Jingle Bell

Hi Jingle Bell:
Sorry that you had to join our group, but welcome to you and your husband. You will hear from the most knowledgable people in the oral cancer arena right here on this Forum, so you came to the right place. I don't have any experience with the type cancer hubby has, but I've read other member's comments and I'm sure you'll be getting a lot of responses soon. Just wanted to welcome you and my thoughts and prayers are with you both.
julieann

Welcome, Jingle Bell,,
Sorry you have to be here, but glad you found us. I was fortunate in that I didn't have to have a trache or skin grafting. I had a good part of my tongue removed and 30 lymph nodes. I also had an entire summer (basically) of radiation combined w/three sessions of chemo. I am doing well, so far, but make sure your husband gets proper nutrition during his treatments. I had a PEG tube, and was really glad to have it out. I am still mostly eating soft foods two years out of treatment. He will just have to experiment to find out what works for him. I am still drinking at least 3 Ensures a day in addition to regular food. Yogurt was one of the first foods I could eat. I can also eat most seafood, if it's not heavily breaded. Good luck to you and your husband!

Jingle Bell,

I had pretty much the same surgery your husband had although they didn't try to rebuild my tongue from my neck muscles. I don't think I've read of anyone on this forum where that was the technique used. My reconstruction was done using tissue from my forearm and I wasn't sent home until I could swallow at least liquids. So to answer your questions:

1. Yes - again, the neck muscle part is new to me, tissue from wrist is pretty common
2. I was started on broths, jello and ice cream. Probably applesauce as well. I didn't have any trouble readjusting after surgery and was able to eat without trouble until radiation messed it up again.
3. My understanding is, the radiation generally kills of the hair on the tongue but not always. I'll let other chime in on how they dealt with that.

- Margaret

Thank you all for the warm welcome.
Margaret, I was just curious as to how radiation treatment messed up your ability to eat/swallow food. Could you please elaborate? And thank you all for your wonderful words.
Many happy thoughts to all
Jingle Bell

Hi there - I too had a very similar surgery to your husbands and finished radiation ten weeks ago today!!! Though two of those weeks were technically "radiation" time because radiation is cumulative generally the person feels okay up to week 3-4 then things get bad - with the worst of it being the to weeks following rads. -

There was another man here who had a similar surgery to your hubby - he did not have radiation or chemo but his flap was from under his chin... And yes hair is normal if the location they take it from is hairy.

The order they did the surgery in is right. I had my tongue operation, and nodes and rebuild done at the same time. Sometimes they do fail for whatever reason. Under the chin is a new technique being used it's usually the wrist or the thigh they take a graft from, with the wrist being optimal since it's the thinnest skin on the body. (that's what my surgeon told me.)

Your hubby should be able to eat soft foods until a few weeks into chemo - I have to say I preferred semi solid to mushy though. Mushy was hard to control, but things like omelets (not dry foods though) were easier to eat - so maybe small buis of meat. I used to put it in my good side chew it and swallow. It depends on your hubby though. And rads makes a mess of the insid of your mouth. It causes mouth sores, sensitivity to acidic or spicy foods, swelling of the tongue again (if it's had time to deflate after surgery) and messes with your taste buds. None of it is pleasant but it is doable. He may end up with lymphedema from his radiation, and surgery so he'll be swollen for a bit after surgery, and rads.

Good luck... My thoughts and prayers are with you both.

Jingle Bell, I like this name but am here to welcome you to our family even tho I hate to see anyone with this disease, this is the best place for friends and answers. I am sure that any questions you have will be answered by some of our memebers. Give my best to your husband and let him know you are his #1 booster thru this time. I'm not much good at advice but haven't seen anything about drinikng water. Make sure he has plenty of it daily. I have been drinking 6 to 8- 1.5 liters a day for over 4 yrs now and it helps. I drink spring water but we all have different ideas about which we like.

Jingle Bell,
Radiation does more damage to the inside of the mouth than does the surgery. I actually was able to eat more after surgery than I was able to after radiation. The radiation damages not only the taste buds but the salivary glands, and that makes it hard to chew. I still am constantly rinsing out my mouth. This also effects speech. My mouth is worse in the morning.

As far as eating goes, let me clarify something. While most of us who have done radiation have struggled with eating after the first 3 or 4 weeks of treatment, some do not. Some members have gotten thru this easily and been able to continue eating with only a small amount of difficulty. Every single person is going to respond in their own individual way. Some struggle while others wiz right thru. Ive noticed nutrition and hydration play a huge factor in how well a patient will do. If a patient gets extra fluids say 64 oz minimum and 3000 calories daily then they will have it easier than someone who just scrapes by with say 30 oz of water and 1500 calories a day.

Even when your husbands sense of taste changes and food doesnt taste like it should you must push yourself to keep eating. When swallowing is uncomfortable and he doesnt want to do it, he must anyway. The eating and swallowing difficulties are a temporary problem for most of us.

jb, i'm new too and sorry to be here as well but believe this a Godsent. a knowledgeable advocate is so important so be a sponge! you will become an expert quickly.

all the best.

Hi- I had the same forearm-flap surgery succesful in the first attempt 9 years ago. I ate sour cream, yogurt and they disconnected the peg before I left the hospital. The tongue can be later lasered to remove hair. He is fortunate to have this surgery to restore speech, eating everything etc. Only it is now a two-tone tongue! I recently had a couple growths along the flap line which were nothing. Good luck.

Hi Jingle,

Welcome to the OCF, sorry that you had to be here but this place is wealth of information and will help you and your husband get through this disease.

Now coming to your questions:

1. The first surgery that your husband had is called Partial glossectomy where they would have removed part of the cancerous tongue. If Neck nodes are affected, the docs would also perform Selective Neck Dissection.

This is usually followed by reconstruction of the tongue. In my father's case (left lateral tongue cancer), they folded the remaining right tongue and attached it back to left. The tongue was shortned but functions were retained. In your husband's case since that was not possible, so to retain functionality, they used the Neck muscle which unfortunately failed. To stop the tongue bleeding they had to cauterize his tongue.

The second surgery (or third) was the second reconstruction using tissue from his forearm (Forearm Free Flap reconstruction).

2. Once feeding tube is removed, you can gradually start with semi-solids. I have not seen any complication in case of my father. Your husband would need to gain some weight to be able to progress with next phase (Concurrent Chemo-radiotherapy) of treatment.

3. I am not aware of any hairy tongue but it may be possible and curable.

Take good care of your husband. As a caregiver, everyday would be a new challenge for you.

All the best.

Hi Jingle Bell
My husband had half his tongue replaced with a flap from his arm last Oct.7th. He too had hair on his new tongue which "fell out" during the radiation process and has not regrown, he also does not have to shave in the area radiated which he is happy about as it is pretty scared up with his past surgeries. He does still have his peg, and in his case it has taken therapy to convince him he can safely eat, it still is hard work for him to do so and for him it was just easier, quicker to use the peg for food. (He asked the Dr. to put in a peg because he hated the nose tube.) Looking back, I realize depression played a huge part in his refusing to even try to eat food for many months after treatment, he never tried eating before starting rads/chemo. As his life spirled out of his control, eating was something he could make a decision about the therapist explained to me. To his day he wants his peg to stay in in-case the cancer returns and he needs it again, it is like a lifeline to him. So as you can see from the posts every patient handles this major change in their lives differently. I have gotten a lot of information and support from this site this past year - your in a good place for help as you need it.

Well as everybody is saying everybody heals and handles it all differently. Ron still has the NG in now after his 2nd bout and surgery and another graft off his left thigh now. His surgery was June 30th. He failed his first swallow study 3 weeks ago, which when he had his first surgery he passed that one, this one is harder because of the radiation he had with the first bout. He is harder to heal because of it.He also had issues eating because of the radiation. It causes burns and sores in and on the mouth some folks I guess worse than others, but the feeding tube helps keep up with the nutrition IF they will eat. That is the big IF. Some folks understand they need to eat to heal and some folks you just can't get them to realize it is for the best and are "hard headed" you can say. Ron was able to eat Stouffer's Mac and Cheese and any pasta soaked in a creamy sauce because the red sauces burnt his mouth and he had an issue with salt/acid food. He loved jello(this was all before his 2nd bout) Alot of creamy foods just watch out for spicy and salty. And if he will do it baby food is great. He will just have to try out things to see if he can get them down. Trial and error.
Good luck!

Oh and about the hair, I don't think Ron's is there anymore either probably from the radiation. But yes you will see the whiteness of the flap when he speaks. Ron speaks fine except an issue a bit with L's but everybody he talks to can understand him. And he uses Biotene or store brand similar to for mouthwash and keeping his mouth moist. Everybody here will help you for what to expect and any suggestions in feedings and healing.

Hello there...sorry you have to be here...but glad you found it.

I have never heard of anyone having the "hairy tongue" issue. The area they take the wrist skin from is generally least hairy area. I had my surgery April of 2010, and have yet to have any hair show up on my new tongue.

The neck tissue is new to me. I have only ever heard of the wrist flap or cheek tissue being used, and then a piece of skin from the thigh used to reconstruct the wrist area.

I had half of mine removed and a neck dissection, and then had 30 rounds of radiation, but was deemed "too depressed" for the chemo that i needed, (that made me very mad at the medical oncologist that decided that. What did she expect, I was 25, in nursing school and had to withdraw 6 weeks before the end of the semester and was being told I had a 50% chance of living to see 30 years old. Was I supposed to be dancing a jig? lol)

When I came off the NG tube the first time, I got an infection in my neck dissection area, and was put back on the ng tube a week after it was removed due to the infection. After the second time, when they removed it, I was on everything thickened to baby food consistency just as a precautionary thing.

Usually they will try to do a swallow test with an xray and whatnot or at least test you out in their office before sending you home with free reign. If they do just send you home with free reign and no advise as to where to start, I would start with thicker stuff, almost baby food consistency for food, and like nectar thick liquid, so still liquidy, but still thick enough to help prevent choking. One of the things I did at first was take yogurt and thin it out with some milk and drank that, or mix some protein powder into milk which thickened it up a bit. Most pharmacys should be able to get thickit(or another thickening powder) that you can add to beverages to thicken them. It's usually tasteless and can be added to anything(at the nursing home I worked at, we even added it to pop and coffee and no problems).

Hope everything goes well for you both. If you have any issues during radiation...just get on here and type away, and we will do our best to help. If you would like, you can talk with me too, as I went through almost same exact treatment, except no chemo.