I spoke to a third oncologist. He said that recurrence is different with HPV related cancer at the base of the tongue but that they have seen no difference in recurrence if it's on the front (other than the base) of the tongue. He said treatment is the same whether it's HPV related or not. What he's saying goes along with most of the things I have read. Also, my idea of avoiding surgery and just having chemo and radiation doesn't seem like a good one now. One of the radiologists I talked to contacted oncologists at Karmanos Cancer Center in Detroit, Johns Hopkins and the Mayo Clinic for their opinions. The guy really put an effort into getting an good answer. Bottom line they all said that chemo and radiation vs surgery and radiation wasn't even a close call. That surgery followed by radiation is by far the best chance for sucess. They did say that, if the tumor is removed surgically and clear margins are not obtained, then chemo and radiation has a good chance of success. I asked if radiation/chemo to reduce the tumor, followed by surgery would be a way to reduce the impact of the surgery. They said that the radiation does so much damage to the tissue that surgery afterwards becomes much more complicated and, in some cases, impossible. I'm putting this out there in case anyone else is trying to make the same decision I was. Hopefully it helps.

I made the decision to go with surgery and, at least so far, I'm glad I did. On May 17th I had about 60% of my tongue removed along with lymph nodes on both sides of my neck. They estimated that they were going to have to take more than that.I'm glad they were wrong. They got clear margins which made me very happy. One lymph node was swollen but showed no sign of cancer.I spent five days in the hospital, followed by a little over two weeks in an extensive care facility and now home. The extensive care facility was the only place around who would accept patients with trach tubes. I've been home for three days and just had my trach and feeding tube removed yesterday and started eating by mouth. I've lost almost 30 pounds in those three weeks because I couldn't tolerate the food they were giving me. Hopefully that trend will reverse now because I have radiation coming up. I don't need to lose more weight. One of my vocal cords was damaged but they said they can fix it if it doesn't heal on it's own. I only talk in a loud whisper because of the vocal cord but most people are able to understand me quite well. I'm pleasantly surprised at me enunciation. Gs do give me some trouble but I'm getting better with them. The scars on my face and neck are getting hard to see already. I know radiation could change things but right now, I'm happy with my progress. If someone had ask me how I was doing even a week ago, I would have said horrible and, at that time I was wishing I had just let the cancer run it's course. For anyone who is facing the same thing I can tell you, it's a really rough first few weeks. Brutal would be a good description. But, hang in there. Just as fast as it can move in a negative direction, it can start moving in a positive direction.

Your positive attitude towards your treatment is a big factor in how you feel. I’m glad you sound like you’re doing well. Do find a way to boast your calorie intake now before you start radiation. You will need all of the weight you can put on. Do you know if you will be getting a feeding tube prior to radiation starting?

I was just wondering about how you were doing, Marv!

Sounds like you have just started doing better. Im very surprised the feeding tube was removed after losing 30 pounds so quickly and your upcoming radiation. Losing weight during this is NOT a good thing, even if you have weight to lose its best to keep your weight stable. Ive also lost considerable weight in a short time and Ive found out it wasnt just pounds I had lost, its muscle too. Do your very best to get the most calories every single day that you can. Usually the daily minimums are 2500 calories and 48-64 oz of water. Because you lost so much weight so quickly you will want to increase your daily calories to 3500 a day to help build your body back up. Eat all your favorites as much as you can so you dont go into rads having cravings.

Best wishes with a speedy recovery!!!

Well I have started gaining weight since I was taken off of the feeding tube. I found some stuff called Boost VHC (very high calorie). It has 530 calories per 8oz serving and it doesn't taste bad. I add a couple of heaping spoon fulls of Malted milk and a half of a banana to it and blend it. I have one or two a day along with other meals. I would recommend it to anyone who want to put on weight. You can get it online at the Walmart site. I'm still on soft foods. My tongue is still swollen and it's hard to move solids. Also, I find I can't swallow nearly as hard as I used to. I have to wash the food down with a drink of water. The more solid it is, the more often I need the water to wash it down. Has anyone else had this problem? If so I would like to hear suggestions on improving it.

My incisions are healing very well including the donor site. I do still have a lot of swelling on one side of my neck and both sides are hard and numb. It's been a little over a month since surgery and I'm beginning to wonder if it will ever go back to normal size. As for the numbness, the surgeon said it may or may not go away. He told me to massage the swollen area but when I do I get terrible pains in my ear. Just touching that area of my neck will cause the pain, not in my neck, but in my ear..

I had a mask made and start radiation in less than a week. I'll have six weeks of intense radiation because of the one swollen lymph node and because there was cancer in the nerve under my tongue which was removed. I'm finally making progress and fear that a lot of it will be erased because of the radiation. The radiologist said that they aren't going to put me on a feeding tube unless I start losing too much weight. Then, they will only use a nasal tube. They won't give me the PEG tube which I would prefer. From what I have read, people use the feeding tube sometimes for months because of the pain and because of the change in taste.The radiologist and the oncologist said they don't like to use PEG tubes because it's more invasive and because people are more likely to become dependent on them and just quit eating. They said having a tube hanging out of their nose makes people want to go back to eating on their own sooner. I don't like the idea of going out in public for months with a feeding tube hanging out of my nose when there is a good alternative and plan to eat as much and as often as I can no matter what kind of tube I have.. I might have to have a discussion with them.

If anyone has some suggestions on things to do to help minimize the negative effects of radiation I would love to hear them. And thanks to everyone for their support.

At this point, it may be hard to put in a feeding tube as you have to swallow the line. A nasal tube works well too. Just keep doing your swallowing exercises all through the radiation — even If it means dry swallows. It can make a world of difference.

The tube I had was straight to the stomach, no swallow of tube necessary. Because I already had feeding issues prior to cancer, we went for it (not happily) due to doctor's suggestion. It turned out to be absolutely necessary for me. And if you're stubborn, it's not likely something you'll want to become dependent on ... you have to really limit your physical activity and what positions you rest in, just to not dislodge the thing. It's NOT 'fun' whatever that doctor may think, and certainly not an easy way out. (I may have been further inspired by not tolerating the formula well, sigh.) But yes, whatever you do or don't have, keep up the dry (or water) swallow exercises ... that speeds the recovery.

You do what YOU need ... you have the doctor's recommendation, and that's good, but you know you and your perseverance and your food abilities.

I had surgery on May 17 to remove abut 60% of my tongue and the lymph nodes in my neck. I had very clear margins and the cancer had spread to one lymph node but it was still intact. The part of the tongue I have remaining has been painful. It was understandable right after surgery and it did subside. Then, about three weeks ago, it started hurting again, progressively got worse and started to swell. Different doctors checked it when I complained over time but said I was just biting it. After a week into radiation, it got so bad I could hardly wear the teeth guards due to the pain and couldn't eat very well. They had to put the feeding tube back in. I told them no more radiation until they did a CT scan. They did it and found what appeared to be a tumor. I had a biopsy done four days ago and it turns out that it is cancerous. It's grown to almost one inch by one inch in size and is in the back of my old tongue and extends into my graft tongue. The surgeon who did the biopsy (also the one who did the hemiglossectomy) said he could operate but wouldn't recommend it because of the location and the quality of life I would have if he did. He explained what functions I would have left and I agreed with him. I asked him if there were any good alternatives. He said just chemo and radiation to try to shrink it and buy more time. He couldn't find any clinical trials that I would qualify for. My wife asked him how long I would have if they couldn't shrink it. He said maybe two months. So, to anyone who has this done, if you have pain that doesn't subside in a short time, push the doctors to do a CT scan. If the catch it early enough maybe you won't be in the position I find myself in. I meet with a radiologist and and oncologist in four days to discuss the proposed plan and the chances of success. At this point, I don't have much hope.

Marv,

First of all, I’m very sorry that you have had bad news. It’s hard to be told that the cancer has returned when you’ve already been through so much.

When my husband’s metastasis was diagnosed, six months after he completed radiation and chemo, he was given six months. Then the possibility of an immunotherapy trial came up, so he was one of the first patients to get the PDL-1 treatment. When that did not work, a second trial had opened up and he went on that. In all, his life was extended by one and a half years. During that time, a interventional radiologist found a new way to open up his esophagus, which had been closed by scarring after radiation. Eventually, John succumbed to pneumonia because he had developed silent aspiration, not cancer. What I’m trying to say is, advancements in cancer treatment can come at any time, so don’t lose hope just yet. But you would like to be included in trials, you must let your medical oncologist know now, so they will keep you in mind. The NCI has a page where you can find out about new clinical trials. You can sort of register and you’ll get notification when a trial for your type of cancer comes up. Do understand, though, that clinical trials can be tough to go through, depending on which stage the trial is at. John’s PDL-1 trial was a Stage 1 trial which meant that the medication had only been tried on monkeys before John got into the programme. The question, of course, is, if you are willing to risk that. You would also do well to discuss these issues with your wife before you see your doctors in a few days’ time.

I don’t know what kind of surgery your doctor said he could do, would it be a total glossectomy? If so, you may want to look at the posts by a member by the name of TammyK’s (I may have got her last initial wrong, but I’ll look it up and repost) Her husband had a total glossectomy and Tammy writes about what they went through in some detail.

Head and neck cancers are a tough fight. The researchers and doctors are working hard on them, so don’t lose hope as yet.

The name Tammy uses on the forum is tamvonk..