I've just been diagnosed with SCC of the right side of my tongue. It's well-differentiated, and superficial - not in the muscle yet. Both Dr's tell me that's very good news. (I'll post more particulars next time -it's late and I'm too tired to go look at the report - just got it yesterday.)

I had a sore place that came and went on my tongue for over a year, finally saw the dentist, who said it was leukoplakia, needed to be biopsied to rule out cancer, and sent me to an oral surgeon. The biopsy was done a week ago.

Yesterday the OS referred me to an ENT, and I was able to get in today. She said tongue cancer is "nasty" and needs to be treated aggressively, and recommended precautionary neck dissection on that side at the same time as the resection of the tongue. I understand the process of removing the growth on the tongue until she gets clear margins, not as clear about the Neck Dissection.

She said the neck dissection part (which she would have another surgeon in with her for) shouldn't be much trouble recovery-wise; did say I'd have a drain for 3 days, but may be able to go home the same day, or very probably the next morning. - That doesn't sound quite the same as some of the posts I've read so far. (Just found this site tonight)

She doesn't feel anything in my neck, but is going to do a PET scan, (I've realized from what I've been reading that she didn't say if it was just for the head and neck or for the whole body.) She said if nothing shows up in the lymph nodes I wouldn't need radiation.

One part I'm unsure of is that she is scheduling the surgery a week (or less) after the PET scan. I feel like that if anything shows up on the PET scan, that would change the treatment options, and I would want to check out a cancer center, etc.

I liked her, and she was very informative and answered all my questions and seemed great, but after seeing some of the posts, I am afraid she might have been downplaying some things. I will check her out, and consider going to other Dr.'s , just don't want to wait too long!

We've scheduled the PET for 2 wks from now and the surgery the following week. (she would have done the scan next week, but I'm leaving on a cruise in two days, and am going to do some more research during that time. She agreed that another week was reasonable to wait, and told me to rest and relax and be in good shape for when I get back and have surgery.

At this point, I feel very fortunate that the cancer is superficial and she feels that the removal won't cause any speech or swalling problems. (although it is about 3cm, which seems pretty large to me) I did well after the biopsy, so have a little bit of an idea what that recovery should be like, if all goes well.

At this point, I'm planning to go ahead with the PET scan and surgery as scheduled - then if any lymph nodes show anything, probably get some more opinions on further treatment.

Here are my basic questions:
1. I'd like more information from people who have had the neck dissection - it doesn't sound quite as easy a recovery as she indicated.

2. Is it reasonable that she isn't involving an oncologist at this point? She said unless any lymph nodes come back, we won't need to. Is that reasonable - to not do anything precautionary. (I'll be thrilled if that's the way it goes!)

3. Am I crazy if I don't get a 2nd opinion between the PET scan and the surgery? I'm in Central California, so could go to one of the major university hospitals if I should do that.
I'm especially thinking that if the PET scan does show something else, I should get some more opinions about treatment - but don't want to wait very long to get the thing removed from my tongue!


I'm really tired and may not be making much sense, but was so glad to find a site that wasn't all horror stories and seemed to have some controls and oversight.

Thanks to any of you who have advice or information.


BTW - I'm 55 and in good health otherwise - and never smoked and drank socially very seldomly!

Dear Rhonda,

Welcome to the OCF forum.

Your story is very similar to mine, so I will tell you what I did. Hearing this from someone having gone through what appears to be what you will probably be doing, could be very helpful.

My biopsy stated "moderately differentiated". My original lesion was smaller than yours and the biopsy removed the whole thing. First of all, I did go to a CCC(Comprehensive Cancer Center). I did not get a second opinion as I was comfortable with the protocol presented to me. I had a partial glossectomy and a modified neck dissection. I did not have a PET scan. I did have a CT scan prior to seeing the surgeon, but he did not order it. He does neck dissections routinely as his opinion is that CT scans can miss cancerous lymph nodes. I was seen by a radiation oncologist prior to surgery and was followed up post-op by him, too. The decision was made not to do radiation and chemo based upon the clear nodes.

As far as the two procedures were concerned, the neck dissection (with 30 nodes removed) was not difficult at all. I did have a drain for less than a week (went home with it) and it was no problem. I am still numb on my cheek and neck in that area, but expected that and it is no problem and a small price to pay. The glossectomy was another story. I had a 2 cm resection which was very sore for about 10 days and then started to rapidly get better. (Since your lesion is 3 centimeters, your dissection will be larger than mine as they have to go wide enough to get clear margins.) Eating was difficult and limited to liquids during the 10 days. I wouldn't recommend going home the same day or next from the hospital. I was operated on a Wednesday, went home on Saturday and probably should have stayed until Sunday.

In summary: You are located in a great area for getting a second opinion at a CCC. I would highly recommend it. However, don't be surprised if you do go, that you might get a different treatment plan. You have to feel comfortable with the plan that you choose and second guessing it after the fact can be a big problem. We will be with you through each step of your treatment and you will find someone here that probably has been down the same road you go.

I hope that I have answered your questions and not given you too much info. But you seemed like you wanted all the facts. If you want to speak to me directly before you leave (or after you get back), please email me your phone number and I will call you. I am on the east coast, so I'll watch the time. I check my email frequently. Send a direct email to [email protected].

Jerry

Good luck and I hope you have a great cruise.

Rhonda,

Welcome to OCF -- I'm glad you found this site fairly early in the process of dealing with SCC.

Like Jerry, I would recommend that you get an opinion from a head and neck cancer team at a CCC before going ahead with the surgery. After my initial biopsy, my ENT and oral surgeon worked in conjunction with a team at the nearest CCC to evaluate the best course of treatment for me. (Almost immediately after my biopsy, my oral surgeon referred me to a medical oncologist who helped coordinate all the testing before my treatment started, and to this day he remains my primary care physician.) The CCC team (including a couple of oncologists and radiation dentistry specialists) all agreed that a partial glossectomy and neck dissection were the right first step, and depending on the results of that, radiation might be necessary as a follow-on. I was able to go ahead with my treatment knowing the reasons why a group of oncologists with different specialties had come to a consensus about the approach to be taken in my case.

As to the neck dissection, I know it can sound scary, but I found that my scar healed fairly quickly (it really helps to have it closed by someone with strong plastic surgery skills). I had the numbness that Jerry mentioned for some time, but eventually it seemed that all the surrounding nerves repaired themselves and all the sensations in that area returned.

Cathy

Hello. I too had the same diagnosis as you. I had a 2cm tumor on the side of my tongue (non smoker / non drinker). Mine was well to moderately differentiated. I had the partial glossectomy and a bilateral (both sides) neck dissection. The others who have posted are right - the neck dissection is pretty easy to recover from. I am still numb around the incision and up towards the bottom of my chin, one ear is also partially numb - but other than that - recover has been quite easy for the neck. I was stiff and sore for maybe a week or two afterwards but probably had full use and ease of turning in 1-2 months. I had surgery on a wed and left the hospital on Sun. I'd advise you stay in until you can eat on your own. I did not have a feeding tube and so eating was very painful for the first week or two. Only liquid or semi liquid foods.

The tongue took quite a bit longer to heal. I had 20% of my tongue removed. You'll probably have similar. At first it was very swollen and that took several months to fully go away. (Also there was swelling in my neck area as well - but if you are only having one sided neck dissection - you might not experience that). My tongue was very sore for a long time and my speech was impacted for a couple of months. Although- everyone could understand what I was saying the day after my surgery - so it wasn't that bad. I am 8 months out now and my speech is back to almost 100%. I can still notice a difference and so can my mom - but most other people can't. I can feel a difference when I speak certain words still. My tongue is also numb on that side as I expect yours will be as well. And, that is kinda a pain b/c it is hard to get food off my teeth now - just means I have to brush more. Also, they removed salivary glands for me so I have a drier mouth now and sometimes that is not comfortable - but it isn't terrible.

I did not have radiation. My ENT (who I was already seeing for allergy/sinus problems) brought his partner in on the case and he did most of the surgery and my follow up visits are with the partner. It wasn't at a CCC, but he was trained at a CCC. He recommended no radiation after the surgery....however, I did go to a RO at a CCC for a second opinion and he also completely agreed and did not want me to have radiation at this point.

What I would do - is talk to a counselor or phsychologist before the surgery and have some follow up appointments already set up for afterwards. I didn't do that and really wish I had known to do it. I struggled through it on my own (not married and live by myself) and it was tough mentally. Still is. I also couldn't sleep for the 2 weeks leading up to my surgery and my oral surgeon (who did the biopsies) prescribed a sleeping pill for me for those two weeks and a short time afterwards. You might want to ask about it. You'll get so tired and upset if you have troubles sleeping like I did.

One other thing I forgot to mention - I had a CT scan before the surgery - and that didn't even show the tumor in my tongue (which was a stage II based on size)! So, the neck dissection is pretty standard I think - especially since a CT can miss things. I had a PET/CT about 2.5 months after the surgery to make sure it hadn't come back or spread. It was all clean.

Good luck to you.

Thanks for the information, support and encouragement. I'm rushing around trying to leave town and get things set in motion, but will be back in contact ASAP. I'll be on the forum during my cruise.

Rhonda,

Welcome. My story is also simliar to yours, though I was a smoker for 18 years. 2-3 cm tumor on left underside of tongue, well-differentiated, invasive (muscle). Went to ENT recommended by my oral surgeon who found the cancer. Had a CT and PET done. Recommended procedure was partial glossectomy and selective neck dissection.

Just before surgery, I had a second opinion at Johns Hopkins. They would only have done the SND if the PG tissue showed tumor greater than 4mm depth. Because they couldn't get me in before my already-scheduled surgery, and because I knew I wanted to know lymph node status, I went ahead with the SND this past July 18 as originally planned. They took probably 15-20% of my tongue and 11 nodes -- all tissues were negative.

Tongue recovery: I stuck to liquids for a good 8-10 days, then kept to softer foods. Tongue sensation seemed to change every couple of days (numb here and sensitive there; then sensitive here and numb there). It was probably a good 5 weeks before my stitches all dissolved. If you don't regularly carry many extra pounds, I'd suggest a bit of carbo loading before the surgery. You will lose some weight.

Neck recovery: You'll wake up with a "tight" neck. Mine was more disconcerting than painful. I was fearful of moving to much, that I might pop a stitch, but they use some heavy-grade non-dissolving thread so it would be tough to do so. Laying down and sitting up were the most difficult, simply because of the "tightness" and residual paranoia about stitch-popping. My neck started feeling much better after just a couple of weeks. Lately, it has returned to being a bit stiffer, and there is some odd tingling around the jaw, so I'm glad to read the other responses here that mention similar sensations.

The first day after surgery I didn't think I'd be ready to go home the following day. The second day I couldn't wait to get home. Do what they say when they tell you to get up and walk around. You may think it sounds nuts to do so with so many stitches in you, but you'll feel much better.

Because of a good margin, no evidence of cancer in any of the tissues removed, and my age, radiation isn't recommended for me right now. I did see a radiation oncologist before surgery, but only as a consultation on what I might expect after surgery since follow-on RT is often necessary. I had one follow-up with him post-op to confirm radiation wasn't presently recommended.

That's a bit of a scattershot response, but I hope it helps in some way to fill the picture of what you may go through in the next few weeks.

My next few weeks will involve a follow-up CT/PET since I have a bit of bulging tissue under part of my neck scar. I hope it's only scar tissue, and my ENT thinks so, but I'm not taking any chances.

Not to screw up anybody's minds here but I had radiation and chemo only for an advanced stage tonsil cancer with no surgery and I am close to 4 years cancer free. The treatment recommendations for BOT are the same as for tonsil.

Look at page ORPH-2 (and also ORPH-A) in this document: http://www.nccn.org/professionals/physician_gls/PDF/head-and-neck.pdf

It's just another question to ask -what would the risks and benefits be to chemoradiation.

If you have the SND and have positive nodes they will probably opt for radiation anyway.

In any case, if it were me, I would be getting a second opinion from a CCC and if I was is So. Cal. I would be considering PBT at Loma Linda http://www.llu.edu/proton/ as well. We are very fortunate to have many CCC's in this state. They might very well agree with your current ENT so at least you can feel confident in the treatment plan and its efficacy.

Here are some answers to your questions. I hope they help you!

Here are my basic questions:
1. I'd like more information from people who have had the neck dissection - it doesn't sound quite as easy a recovery as she indicated.

It depends what type of neck dissection they are talking about. If it is partial, you should be out of the hospital within a week with a little swelling and pain that can be managed with some drugs at home. If it is radical, then it is a bit more involved with the muscle, so it will take longer to heal. I had the partial, so that is the one that I am the most familiar with. My neck was stiff, but massaging it greatly helped and now their is barely any scar.

2. Is it reasonable that she isn't involving an oncologist at this point? She said unless any lymph nodes come back, we won't need to. Is that reasonable - to not do anything precautionary. (I'll be thrilled if that's the way it goes!)

I went to a cancer center from the beginning, so my experience is different than yours, but for what it is worth, I feel that it is important for you to be at something a little bit more comprehensive. Even at a cancer center, if there is no nodal involvement, you will not meet with the radiation doctor or oncologist if that is the recommendation. However, I found that if there is nodal involvement, you already have a team that knows how to work together and the transition from surgery to radiation and oncology is pretty smooth. Sometimes dealing with people at multiple locations can be more of a hassle than you want to deal with at this point. At least it was for me.

3. Am I crazy if I don't get a 2nd opinion between the PET scan and the surgery? I'm in Central California, so could go to one of the major university hospitals if I should do that.
I'm especially thinking that if the PET scan does show something else, I should get some more opinions about treatment - but don't want to wait very long to get the thing removed from my tongue!

I never got a second opinion, but I was also at a major university hospital from the beginning and I was 110% comfortable with what they were telling me. If you are feeling the need to ask this question, it might not be a bad idea to get a second opinion if you can.

I too had the same diagnosis as you. I had a 1.2cm tumor on the side of my tongue (non smoker / non drinker and 4mm one in one node that did not show up on the PET (they don't that small). Mine was well to moderately differentiated. I had the partial glossectomy and a partial neck dissection.

Hi Rhonda -

I just wanted to add to the comments above since my original ENT had some similar comments as yours. Ultimately, I chose to go with my instinct and seek out an ENT Oncologist for my surgery. In fact, I met with 3 before deciding. It is your right and your responsibility to take charge of this process.

As for the neck dissection, it really wasn't that bad. I was out of the hospital the next day. The only pain I felt was due to the breathing tube and this went away after a few days. Below, you will see a link to my blog which includes details on the surgery, pictures, etc. and a description of the process I followed to assemble my team. I hope this helps you.

Take care -

Mike

I'm on my cruise and enjoying myself; figure I will have a lot to deal with in the next few weeks, at a minimum!

On the way to the airport, my friend called a friend who has oral cancer and he told me about his treatment. He went to UCLA and recommended a surgeon there. I wasn't able to get in with the same Dr., but have an appointment there the day I fly back in to LA! My friends are wonderful- they suggested that I try to get the appointment that day and they would just wait for me for the 4 hour drive home!

In reading your posts, I notice that a lot of you recommend cancer centers. I am assuming that a large university hospital like UCLA will also use a team approach, or is there even more consensus that an actual cancer center is the way to go?

I haven't cancelled anything with the local ENT yet, but think I'd like to have the most experienced ENT surgeon possible to do my surgery, and that someone at a major university teaching hospital should be more experienced than an ENT in our smaller area.

Thanks again for all the info - I'm trying to gather as much info as I can and make the best possible choice.

'Til later,
Rhonda