Hey all,

I had a hemi glossectomy on 12/26 which took approx. 6 hours. They took a piece of my chin to replace the area where the tumor was. I was relieved to have heard the news clear margins 1/2 to 1cm! I was thinking this would be smooth sailing especially since they did a neck dissection and took 29 nodes which all came back as negative! On one of the last days in the hospital (I was discharged 1/1) the radiation oncology docs paid a visit and started to inform me that they will probably recommend radiation/chemo. This is after they couldn't tell where the piece of skin was taken from! In my mind, how can a doc recommend something like that without obtaining all the information in my file???!!??? I will be getting second and third opinions since my surgical oncologist mentioned that she didn't think rad/chemo was necessary....I understand that I am young and they want to be aggressive as possible, but I don't want my teeth to fall out or be limited on what I'm able to do to get a 5% lower chance of recurrence? Thoughts?????

I don't know all your particular's, but negative margins can have different meanings to different doctors in size, 1cm, 5mm, etc. and all not agree either what is considered clear or not. Maybe it was determined from the start to probably do radiation, and some like to take you one step at a time until knowing further after surgery, which can tell the tumor Size, location, thickness, midline, other negative prognostic factors like PNI, LVI, which effects wether radiation or chemoradiation may be needed, and further histology from the biopsy to come, and probably only have the frozen section biopsy done during surgery. Personally, I would want radiation to kill any microscopic cancer, if thats what was recoomended. See about a 2nd opionion, but yiu need all your files, and radiation should start bewtwen 4-6 weeks, idelly, depending on healing. You definately don't want to do this twice, which outcome is not that good. Glad your surgery went well.

Hi fish, I had the same result (54 clear nodes). My original plan was chemo and rads as my PET was positive for nodes, but didn't end up doing it. My surgeon and oncologist had different views and I was ultimately given the choice.

Just a couple of weeks ago, I saw the surgeon for a follow up and he said he was very glad I had not chosen the rads, as I was progressing so well.

It's all individual, and I had good clear margins, with a forearm reconstruction. Get all the info you can before making a decision.

I agree different opinions from different doctors is maddening. It happened with me also, and I reacted pretty much the same as you. Others told me a couple of things when I brought it up on the forum, which I now pass on to you.

1. Each specialty likes themselves. Surgeons think surgery is the answer most of the time; same for RO's and MO's. That's probably why someone thought of the bright idea to have a tumor board or tumor panel and let everyone have their say, then choose a prudent path between all of them. You didn't mention whether your case has been presented before a tumor board. Hopefully, it will be and just hasn't yet because of the disruption in everyone's schedule caused by the New Years holiday. If that's the case, then your worrying is premature. Slow down, take a breath and ask your doctor if a tumor board is on the horizon.

2. In actuality, you have already been given a second opinion; coming from a different person, and in you case a different specialty, doesn't that qualify as a second opinion. Now, if you are talking about seeking the (2nd) opinion of another surgeon, okay fine. But, I think I would be much more interested in what other specialties have to say, ie what comes from a tumor board.

Psychologically, you want to agree with your surgeon, we all would as it prevents us from having to face yet more, likely uncomfortable treatment. But, what you are doing sub-consciously is "attaching to an outcome". You want no more treatment to be the answer, and then when it turns out to not be, you are bummed and possibly even angry (I was). It made me start to question the ability of my surgeon.

I remember my surgeon told me we got it all, but you will likely need some radiation anyway. At the time I didn't notice the discontinuity between those two statements. If we got it all then why would you ever need radiation (or chemo). It was my RO who straightened me out on this. And he did it with one simple question - how long were you out under anesthesia. I said an hour and he says they didn't get it all. To get it all is an 11 or 12 hour surgery because they have to cut tissue, send it to pathology for eval, then cut some more, and more and more until pathology says all clear. And that takes a long time ... so long story short, they didn't get it all, and that's why you are getting radiation.

3. Now, one more, possibly touchy area as it relates to what you may be told by forum members. In my case I was told radiation only, no chemo (by my tumor board). Several members of the forum took exception to that, rather forcefully, by saying that no, you need chemo too. This put me right in the middle between them and the combined opinion of all members of my tumor board. This caused a fair amount of consternation on my part and took awhile to resolve. But, in the end, our forum members are not doctors and I had to decide if I agreed (ie trusted) my doctors. And that was a no brainer, I had trusted my RO from day one, so I had no problem choosing and agreeing with his opinion over the forums opinion. I hope this doesn't happen to you. I know our forum members are only trying to help, even if helping sometimes creates other problems too.

I've rambled on long enough, I'll be watching your thread to see how all this comes out.

take care

Tony

We are not doctors here, never said we were, just patients and caregivers sharing experiences, knowledge, some ask questions, and never take what is said from that as what you should do. What works for me, may only be for me, and there are different types HNC being treated differently, like yours is the oral tongue, Tony's is oropharynx, tonsil, which is quite different. You think I listen to anyone's advise or sacrasm, and or as being medical advise, No! I listen, I read, I discuss, I ignore some pompous ones, and I always check with my doctor(s) whose decisions I only go by.

I had surgery the first round, and am back for a second round. I am still positive we made the right choice to pass on rads (no chemo was the suggestion at that time) the first time. But now I am back after another surgery, facing rads and chemo both. I am frightened, but I am also glad that my doctors and I caught the recurrence. It goes differently for everyone. On the plus side, whatever you choose, somebody here will have been down a similar path.

I have looked at the stats for SCC on tongue and the recurrence rate is higher for that area than anywhere else. I'm assuming my RO knows this and is why he is wanting me to go for further treatment. I see more docs next week and I also need to set up an appointment with the dentist for fluoride treatments...teeth are in good shape and actually had cleaning/ filling in November. Now is gearing up for the rads....working out/bulking up and eating more calories.

Hi Fish,

Where did you get treated at? Is it a comprehensive cancer center? My surgeon led the tumor board at my hospital and did not want to suggest radiation unless she absolutely had to - so we waited for the lab results. I had super clear margins - all over 1 cm, but it turned out I had PNI. We were all really sad that I had to go for radiation, but I decided I wasn't having this cancer coming back.

My teeth are still in place - my doctor's assured me I wouldn't lose them, but I do have fluoride trays that I wear for 10 minutes each night. It's not so bad.

I also go to a dentist every 4 months - one who specializes in oncology.

Glocita,

I was treated at KU Cancer Center. The tumor board suggested radiation no chemo due to the perineural invasion. I start radiation treatment the first week of February. I will be done with treatment the middle of March. They are calling for IMRT on the tumor site and they also want to hit the right lymph nodes. Going to do 30 treatments at 50 gray. When did your side effects kick in and what did you do to mimimize the effects. How is the new normal?

John

Hey there usually - week 3-4 things taste weird or lose taste all together - mouth sores begin - enjoy your food now and best of luck!