I am not sure if I know enough to even be writing this... On Feb. 3 I had surgery (neck dissection, 1/3 of tongue removed, flap from forearm, skin graft to arm), SCC floor of mouth, T2,N0. When pathology came back, three margins clear, the other not. So yesterday on the 27th, surgery again. This time removed rest of my bottom teeth other than two, gum tissue, part of bone on gum. Dr. never showed up after to talk to family so today two of his associates came. They said that from preliminary, they do not think it spread to bone but will not know for sure until pathology. They also were surprised I was not expecting radiation (the main doc had told me he did not think I would have to have it). They backed off when they saw I had no clue that was in the works and said I would have to discuss with him. I was doing so well, they released me.

Soooo...next Friday I meet with main doc and will know more which will be a relief, and is why maybe even posting is wrong to do not knowing anything...but I am anxious and wanted to hear from some of you.

1. If radiation is a "toss up" and really a choice...what are your thoughts? It seems the more I read on this forum many believe it should be done to be very aggressive from the beginning with this. So your thoughts please...I know T2 N0 is a good thing...but what are pros and cons (or your ideas)?

2. If I do radiation, what are some preliminary things I should also do to prepare? For example, someone mentioned a "small mouth" or something, a therabite??? What is that? What is the medication to help your saliva glands? Should I ask for this IMRT? Should you have this PEG put in first? What else should I do ahead of time?

I do not mind telling you that my spirits have been terrific through all this, I have recuperated nicely. There are down things like the flap is HUGE pushing my tongue to one side, making speech horrid, and I have been on and will be on liquids (possibly for a year they say if I have radiation) because I have no bottom teeth now, and the tongue problem does not permit me to swallow well. Even with no radiation, he will not "trim" for a couple months, and with will be far longer. But I am coping...I am scared mostly of the radiation...for the first time something is getting to me...but I will do it if it gives me a better chance. Guess I just want you all to talk to me if you don't mind. Thank you.

Hey jj:
Sorry to hear all that you are going through, but please know you are not alone on this board. I can tell you that my husband had surgery for SCC on his left side of tongue, modified neck dissections both sides, graft from upper leg to tongue. The nodes were clear so no radiation. Three months later he got a swollen gland which turned out to be a tumor in his left neck. He had a radical neck dissection Christmas eve, however, they were not able to get all the tumor. He healed for three weeks and started chemo/rad. He has 6 treatments left. They added some to really radiate the tumor site. I don't know if he should have had the radiation recommended in the first place, however, if it was not maybe necessary, he might have not done it anyway. I just think at this time, his cancer became so aggressive so fast that it must have been mets from the tongue cancer. It might have helped him so much more if he would have had radiation after tongue sugery. Chemo/rad has definitely been no picnic, but hoping for good news in the future. He has his PEG put in right after treatment started and it was in a few weeks before he even used it at all. The PEG tube has been no real problem. He was told to use BoostPlus and was supposed to take 8 cans a day. That was way too much for him to take in so I did find out that there is other nutrients with more calories, so we ended up with a Nestles product that has more calories per can. I tell you this so you know that there are options. The nutritionist nor the docs ever discussed this with us. I heard from someone else who had tonsil cancer in the last few years and when I asked the docs, they gave us what we needed. It is interesting that we always have to figure it out and do the asking, but when we do, they usually give us something needed. Just keep that in mind. I hope all goes well for you and I pray everyday, jj, and I will pray for you, too.

Take care,
Debbie

JJ, after reading Debbie's story about her husband, if I were you, I would not hesitate to include radiation in my treatment. Rather to take action now than regret later. Cancer cells are very cunning and they may be hiding somewhere that can escape the detection of the scanning machines and will show up when you think the surgery has done a great job already. In your case, the dosage of radiation may not be too heavy and complications therefore should be fewer. Even though I had the maximum dosage, I don't experience difficulty in opening my mouth as somebody faces here. Neither do I need a peg tube inserted. The most severe side effect I have now is the loss of saliva.IMRT can be a better option for you. Don't be frightened by radiation because the process itself is not painful, only uncomfortable. That's my own experience only and of course everyone reacts differently and the best advice you can take is from your team of doctors. I sense you have a very positive attitude right now and that is really important.

Karen stage 4 tonsil cancer diagnosed in 9/01.

jj, you asked, so here goes. I had a very talented surgeon and plastic surgeon, but it is the radiation oncologist who I am convinced saved my life. I say this because without the radiation, I am sure the tiny cancer cells that the surgeon did not get -- and NO surgeon can guarantee to get every single one -- would have by this time caused me grief. I had a right side tumor inside my mouth. I received bilateral radiation because this cancer switches sides very easily. Karen is right in that it is not painful. In the last weeks, some very fair people, like me, develop burns, but medication can handle that. My take on the whole situation was that I only wanted to deal with this ONCE, so I opted for the big three -- sharp knives, evil death rays, and poison, aka surgery, rad, and chemo. Yes, do opt for IMRT if it is available. I had a lot of rad and can today spit, if I choose to. Having gone through the surgery, I think you owe it to yourself to have radiation too, and to both sides. SCC is a nasty and aggressive cancer, and you really don't want to give it a chance to get going again. Radiation is not a picnic, but it is not the worst thing you will ever have to do, and we will be here to answer all your questions. By the time I was ready for my first treatment, I knew every little thing that would happen, thanks to the kind and generous people here, thus was free from anxiety. Information is power! We can do that for you too. The PEG issue is both pro and con. I had one and am very glad because my mouth was too sore for me to eat, drink, or take meds. I can open it just fine now, so that is not an issue either if you are aware that you need to keep opening it wide throughout treatment. Ultimately, the final decision is yours, but please consider this matter very, very carefully. You are, I think, gambling needlessly with your life if you decide not to undergo radiation. Okay, I am now stepping down from my soapbox. Good luck to you, jj!

Joanna

JJ,
according to the NCCN practice guidelines radiation is a "toss up" for stage 1 & 2. But you have to decide whether to hit it with all of the tools or risk recurrence (not that there are any guarantees). Yes radiation sucks - recurrence sucks a whole lot more and can be fatal. The fact that the margins were not clear and they needed to perform further surgery could very well bump this up a class. Then it really won't be an option - most prudent doctors will recommend radiation.

Recent studies of breast cancer patients showed a greatly improved survival rate for those getting surgery and radiation vs. those with surgery alone.

As far as side effects go, I have no problems with trismus or swallowing and my saliva glands (except for the one in the immediate field) are recovering.

I wasn't on liquids that long -probably about 6 months or so.

IF you are a candidate for IMRT take it! It's your best chance at sparing healthy tissue and preserving salivary function.

I went through the whole deal without a PEG tube but talk to your doctor about this (we PEGless patients are an extreme minority).

I didn't have surgery so others will have to address the flap. There was a recent thread dealing with that very issue you may want to do a search on the site and see what you come up with.

It's great that you have a positive attitude, that goes a long way to get you through to the other side. Hold on to that.

Hi jj,

I agree with Gary, Debbie, Joanna and Karen, I would request radiation to give yourself the best shot at killing any remaining cancer cells.

I had IMRT and I still have saliva, I also had no bad side effects from the radiation. From what Brian and others have told me this is rare.

I had a PEG tube put in about a week prior to surgery. It's no big deal. I fed myself thru the PEG using a 2 ounce syringe and I was given Jevity to feed myself. I mixed in a package of carnation Instant Milk to increase my caloric intake. I was 150 lbs prior to cancer and dropped to 121 lbs in 10 days following surgery. I gained it all back in about 6 weeks. It has 250 calories per can and all the vitimans you need. You will need to input at least
8 cans per day as your body consumes allot of your intake to heal. I was inputting about 2800 calories per day. Remember to flush your PEG tube after every feeding. I used Gatorade 8oz. followed by a water flush of at least 6oz. It only took me about 15 minutes to eat three times per day. I crushed my meds and mixed them with the food or dissolved them in warm water and used the syringe to input through the PEG. You will also want to input at least 60 oz. of water daily. Check with your nutritionest she will guide you on what you need. My insurance paid for all the Jevity and syringes. They will if you can't eat orrally for awhile. For me I just had the tube removed last week, It was in for 7 months.

As far as the therabite device I will attach a photo of one and send it to your email address. They are around $500.00 and my insurance company paid for this also.
As part of your team of Doctors you shoud request physical therapy for your speech, your mouth opening if restricted and a nutritionest. I had to ask my ENT for a therabite device and had to ask for the therapy. I felt let down by him by having to find out all the extra's needed through this forum and not him.
You seem to have a real good attitude about your treatment and that will carry you a long way. I had allot of peaks and valley's during my journey and the help and sharing of so many members of this forum got me through to the end of treatment.

I wish you nothing but the best and I will be praying for a full recovery for you.

Your Friend, Dan Bogan
P.S Excuse my spelling!!!!

Hi, I answered this for someone just last week, so someone here has your problem right now. I had the same flap you had and I thought my Doctor will really have to trim this one! It felt like a big pillow stuffed in my mouth. Slowly but surely it flattened out very nicely and feels just like the old mouth. I think talking and eating helped.All skin stretches and settles in with time. I thought with all they did to my neck and chin I would never be able to really turn my head both ways in a normal fashion.To my suprise I can. It takes time for all to heal.

jj,

I can't add much on the radiation issue except to say that I agree you should have RAD, IMRT if your doc says you are a good candidate for it. As for the small mouth issue, that doesn't seem to have been a major issue with most people. I think Heather had the worst case of trismus (lockjaw) of anyone here. But hers was not from the RAD. It was a combination of the surgery and the fact that there was another tumor growing that the docs weren't aware of. Her surgery was similar to yours, but she had a mandibulotomy, which was the major surgical cause of the trismus.

One thing I will add is that I feel there is an advantage to adding chemo to the RAD. It can cause more complications, but it gives the RAD an extra boost. It is worth asking your doc about.

My 2 cents on the PEG tube..........you will probably need one, but I wouldn't get it too soon. Wait and see how things go first. The longer you can eat regular food, the better. But let your doctor know right away when eating becomes difficult. Once the tube becomes necessary, you don't want to delay. Or you could get the tube right away, but use it only when necessary. Some people breeze right through with no complications. Other people end up with swallowing problems, etc. So I don't think it is good to rely on the tube before you have to. Conversely, it is not good to try to do without one if you do have difficulty eating. You need to have good nutrition in order to heal. Good luck.

Rainbows & hugs,
Rosie

P.S.
I still have Heather's Therabite appliance. If anyone here needs one and your insurance won't cover it, you can have this one. Just e-mail me. Also have some feeding bags left. Free for the asking.

JJ, I'm going to be another one to advocate seriously considering RAD/Chemo along with the surgery. Even with clear margins, then max treatments to the side of the original cancer and mets the cancer still migrated to the opposite side, causing the need for a second surgery and round of rad/chemo.

As far as the PEG, I'm another one who went throught the process without. With all the surgery you've had, if you don't have one yet and are doing ok, possibly you won't need one for the RAD. Like Rosie mentioned, maybe wait and see how things go, but depends on how much weight you have lost and if you are gaining now or just maintaining.

After the first go round was short on saliva for a couple of months, but regained pretty quickly. After second round I can tell the difference, still have some but not much, but it is getting better.

So there's my 2C worth. Guess we'd all be marching you back to the oncologists if we could.
Good luck and take care
Bob S.

Hi jj,
some similarities to your situation, but sounds like you've had more surgery esp. with teeth & gum.

In September i had surgery: jaw split, 1/2 my tongue removed and a graft with muscles/skin from my chest to rebuild part of the tongue & the floor of my mouth. I had a left side neck disection with 67 lymph nodes removed - the good news, no lymph involvement. I was classified as T2, N0M0. But also was told that it could also be considered T2-3 (clear margins but not as much as some would like to see, moderatelt differentiated cells, invasive direction of tumor growth were concerns to some doctors). It is hard when you get different answers or opinions from different doctors!

At first (pre-surgery) the drs discussed surgery followed by radiation. After surgery, because the surgery went very well, I was given the option of doing radiation or not.

Because it sounds like your cancer was a little more extensive than they thought pre-surgery, that it might not be a T2 anymore, or may be leaning towards T3 (which is similar to my case), if so, that is a reason, in my opinion to be more aggressive with treatment - especially if they think it may have gone into the bone (which then would not be N0M0).

I sympathisze with you're having to make this tough decision!! We went for 3 opinions. In the end I decided to go for the radiation (IMRT), just to be on the safe side and hopefully get any tiny cancer cells that might be lurking.

If I read your posting correctly, you posted the day after having the 2nd surgery? Wow, you are recovering quite well it sounds! Good for you. A positive attitude sure helps.

My experience with radiation was not as bad as others. MY feeling is, that if you can go through the surgery that you've done, then you can do the radiation. Don't let fear of treatment prevent you from seeking it!! While it is not fun, it is bearable. I kept thinking I could get through a few weeks of discomfort if it would help to get rid of the cancer, and hopefully prolong my life a bit. It helped to just take things day by day, treatment by treatment.

The saliva, dry mouth, eating issues are there. But as someone else said on this board, it becomes the "new normal" and I find that we are stronger than we realize. While changes and discomfort are scary, we can deal with them. Often the hardest part is the waiting, and wondering!

Now, 2 months post radiation, I still have trouble eating, but have regained a lot of taste, can eat many foods, although it is slow. I am trying really hard not to lose any more weight. I have contined to lose weight since September - about 45 lbs total. I had weight to lose, but don't want to go any lower. I did not have a PEG (just a nose feeding tube for ~ 3 weeks post surgery).

My energy level fluctuates - some days I'm energetic. Others I'm exhausted and need to sleep. But I feel SO much better than 2 months ago, and THAT is a great feeling.
good luck,
michelle