Hi Everyone,

We are new here, and looking for some opinions. My husband had his tonsils out in Aug.,the right one came back with a 2.5 cm tumor, along with a positive 2 cm lymph node.

He had 39 IMRT radiation sessions, and chemo. He had an initial treatment of chemo consisting of Taxotere and Cisplatin, and then had weekly treatments for 6 weeks of Cisplatin only. We were told the chemo was to assist the radiation, and hopefully he would not need a neck dissection.

He went through the treatment amazingly well. He only ever used Motrin and Excedrin for pain. He did not have a feeding tube, although toward the end eating was painful. He worked throughout the entire treatment, only missing work on the chemo days.

We were so excited how well he had done. Both the radiation and the chemo doctors told us they do not see many patients respond this well. The chemo doctor told him he needed to wait until he was better healed to do any testing to make sure everything was gone.

Now here is our problem. We had to go to the ENT doctor. She walked in her office and told us she needed to schedule a neck dissection. We were shocked. We asked her how did she know he needed this, since he had not even had any type of follow up tests done. She said it didn't matter, that there could be microscopic cells in there, and he needed the dissection. We also told her we thought that since he had the chemo, this was to hopefully prevent the dissection. She again said no. She told us it had to be done within 6 weeks of ending radiation. We asked if it couldn't wait until after Christmas, and she told us by waiting until after Christmas might mean he might not be here next Christmas. She did finally agree to get a CT scan done. We did this the same day, and the report came back that everything was within normal limits, or unremarkable. The only finding was 2 calcified lymph nodes.

We went home and could barely talk. We decided we should get a second opinion at Moffit Cancer Hospital. Upon calling, I found out that we would have to wait until the end of December just for the initial appointment.

What we need to find out is

1. If he is to have the neck dissection, does it have to be done within the 6 weeks of ending radiation, or can it be longer so we can get a second opinion.

2. We cannot find any info. on what a calcified lymph node is, and because these are present, does it definitely mean he needs the neck dissection anyway, and we really don't need a second opinion.

Any info. anyone can give us would be greatly appreciated. We are meeting with the ENT doctor tomorrow, so she can tell us when she wants to schedule the dissection. The only good thing is that she says it should be a selective dissection, and he may only be in the hospital overnight. We would also have peace of mind knowing everything was gone.

Thanks for any help.

Sharon

Sharon, I suspect there are lots of us scratching our heads to figure out how to answer you. Maybe Brian and Gary will see your post and be able to offer some guidanceI can't weigh in on this one way or another, but can share that meck dissections are usually not the worst thing to have to deal with long term. Is there another CCC close to you to go for a sooner 2nd opinion? Amy

Sharon,
I can relate and sympathize with you on the shock and disbelief you and your husband went through at the visit with the ENT. Being presented with a neck dissection as the next step after treatment just stunned us as well.
What I found helpful was reviewing the Treatment Protocols. From the OCF home page-to treatments- to Guidelines during Treatment-to PDF file for Professionals. I did not understand everything, but I could match up my husbands situation to the treatments thus far and the outcomes up to the point of that ENT visit. Many points along the Protocol involved more than one way to proceed. Each choice was backed up with studies, presentations, trials and how much weight to give to each backup.
The next visit with the ENT we brought this paperwork with us. I had it highlighted with what pertained to my husband. When the ENT saw we had this, he took more time to discuss with us his statagies. He explained how my husband's unique as a individual big picture played into his treatment decisions. Which is exactly what the Treatment Guidelines urge the clinicians to do. Each person is different and medicine is an art as well as a science. Some decisions are a gamble, and they have to weigh individual situations to decide.
This talk helped us to feel a part of the decicion making process. We gained much confidence in him by being involved and educated from his proffesional standpoint.
Talk to your ENT and ask her to help you with these questions you have. You want to have confidence about your doctor.
Keep in mind your husband's situation may require immediate action.
Ginny

Sharon,

E me at [email protected] and I will see if I can get you in at Moffitt sooner. I just finished there as you can see. You definately need another opinion.

Hi everyone,

We went to the ENT doctor today. Since we had given her the CT scan, and she had something to base her opinion on, it was a much better visit today. What she told us today was that my husband, Joe's, lymph node (the one that she had biopsied) showed up on the current CT as the same size as before radiation. She told us she could also see that their were changes, that it looked like it had dead cells in it, but because it was not any smaller, she felt that it would be best to remove it. She said it could have just a few bad cells in it, and that would be all it would take to spread more.

So we now feel that he should have the dissection. I think that if she would have had the CT done, and seen the results before she told us she wanted to do the dissection, we would have understood a little more. Since it was never even discussed by her prior to the radiation, it just seemed strange that she walked in and just decided it was going to be done.

She can actually do the surgery next week, and he can have his port removed at the same time. I think if she had not had a good reason to do the surgery, we would definitely be getting a second opinion. If he needs the surgery anyway, we would like to have it done ASAP so it doesn't interfere with Christmas. We have a family vacation planned at Disney, and would like to still do that. She told us he should be fine to go by then. We would also like it done this year so we don't have to pay another $1000 deductible as soon as next year gets here.

If you think this sounds appropriate, let me know. I think as well as he has done with all the past treatments, including the tonsillectomy in August, hopefully this will be just as easy. We are just looking for it to all be over. She doesn't expect it to come back, so we can just hope that it doesn't.

Thanks for your thoughts.

Sharon

Sharon,

I'm glad you were able to get a more complete description of the ENT's reasons for doing a neck dissection. My diagnosis was different from your husband's and I had a neck dissection before radiation, so I can't say that my situation was necessarily comparable. However, my neck dissection was MUCH easier to recover from than radiation -- and I hope your husband's is too. I also hope it gives him some extra peace of mind.

Cathy

Sharon, It's good you got the reasoning behind the need for a neck dissection. Like Cathy, I had my neck dissection before rad and chemo because I had a different diagnosis, but it was really the least of everything I went through. I looked like the bride of Frankenstein for a short while but it healed very quickly and there wasn't that much pain. It seems to me your ENT is being aggressive and cautious in recommending this, which i think is for the good.

Nelie

Goodmorning Sharon,
Happy Thanksgiving first of all. I had a modified neck dissection after radiation and chemo, my cancer was in my right tonsil and had spread to 1 lymph node. My ENT told me right up front before any treatment started that it would be in the following order. Radiation and chemo at the same time Nov. 1-Dec 17 (last year) and neck dissection Jan 11 (this year) . I am not sure of the protocol and order of these things. I think it is a combination of the patients specific case and the protpcol of the doctor and their school of thought. Others have posted that the neck dissection is easier than radiation, and I have to agree. The only long term effects from surgery is that my right ear, jaw line, neck and sholder are still numb and that is a bit bothersome in the frigid air of upstate new york, but no big deal. I recovered very quickly from the surgery, but I must say it looked pretty gruesome (57 stapes and quite Frankensteinesque) at first, my young nieces and nephews just starred and would not come close, but now it is hardly noticable at all, . The neck dissection and removal of 22 lymph nodes was the thing that made me feel the most secure that all of the cancer was removed. Just cut that stuff right out of my body, remove it from me, don't just radiate it and shrink it, get rid of it. All is well today not even a year out, looking forward to enjoying that most favorite of meals today, you guys will be there soon enough. Hang in there, fight the good fight, you to shall win.Best of Luck.
Lenny

Hi Sharon:
If there's a question about anything around a node, I would opt to have the dissection. I had one back in February and recovery from that was a cake walk compared to my chemo & radiation after a follow up PET/CT found more issues. If he came through the chemo & radiation so well he will fly through the neck dissection.

Happy Holidays & best of luck to you...

Thanks everyone for all your responses. My husband feels a lot better doing this now. He, of course, would still rather not, but he knows it is for the best and we will know it is gone.

So far the tonsillectomy has been the worst part of the entire process for him. So if this is easier than that, he will be very happy. The radiation and chemo were not great, but he actually took Vicodin for the tonsillectomy, and never needed anything other than the Motrin and Excedrin for the radiation and chemo.

My only other question is, What do they do if one of the nodes shows positive. Would he need more chemo or radiation, or because it is out of there would he be fine. She is removing levels 2 through 4, and the suspicious node was in level 2.

The ENT doctor also told us he should only be in the hospital one or two nights, so we are hoping that is the case. I will try to prepare my 5 year-old son that his dad may look like Frankenstein, haha. The older kids are not worried.

Thanks again, we really appreciate all the info we have gotten here.

Sharon and Joe

Sharon and Joe,

Good luck with the surgery. When I had my ND, I also had my tonsilectomy at the same time. I can relate to the pain that caused. In fact I don't remember any pain from the ND just the tonsils. The only thing that I felt different from the ND was a little tightness in the muscle.

As far as your question about if a node comes back positive. Probably best to ask his Dr. If he has had that area radiated before, depending on how much, he probably won't be able to have it radiated again.

I was in the hospital for 2 days after my ND. They put a tube in my neck and measured the drainage and when it got to a certain level is when they said I could go home.

Best of thoughts and my prayers are with you two.

Sharon and Joe,

I had a selective neck dissection about ten weeks after completion of Rad treatment. At that point I was already back to work part time, and I only took a week off for the surgery. (I wasn't going to work with a drain hose in my neck.) All things considered, the surgery was the least bothersome part of all the treatments. This will be much easier to deal with than the tonsillectomy.

I lost some range of motion in my shoulder, and the muscles atrophied, but after about a year I returned to full strength.
Like Lenny, this was my team's plan going in, so there were no surprises. My surgery covered several areas. They did a biopsy of the tonsil area (my Primary), and a pathologist was present in the OR to freeze, stain and analyze the tissue. When that came up clean, they did the neck dissection, removed my chemo port, and scoped everything (esophagus, trachea, lungs, stomach)looking for anything suspicious. It was pretty much one stop shopping.

I have to say that I gained a great deal of peace of mind when the pathology reports showed no cancer detected in any of the lymph nodes removed, so, while the neck disssection may not have been "necessary", there were certainly benefits gained.

Enjoy your vacation!

Good Health,

Chuck

Well, our medical onc and radiation onc both said that after an apparent complete clinical response, based on a PET/CT scan given no sooner than 3 months after end of treatment, that a ND can add 5-10% local control but recent studies have shown no long-term survival advantage (and more negative side effects). In case of suspicious scans or apparent residual disease, then an MRI and/or biopsy would be the next step, and if these were still suspicious, then a ND.

My husband had a tonsillar, base-of-tongue (and 2 nodes) SCC which was human papilloma virus-16 positive (many tonsillar tumors are, but not all) -- he had 33x radiation treatments and 7x chemo (carboplatin), has what was determined to be a complete clinical response and they told him a ND would probably not add anything more. Of course the Hpokins ENT would have liked to have done one, but he too acknowledged the figures I quoted above. Because of the potential long-term negative side effects my husband declined any further surgery. He is over a year out of treatment and everyone now (including his ENT) thinks he made the right decision. It was his decision, too, no one tried to "scare" him into surgery.

Sloan-Kettering, #1 CCC, does not do ND if the chemoradiation has achieved an apparent successful result, as they do not feel it adds anything. If a ND were the difference between success and failure of treatment, I cannot imagine they would forgo this step. Hopkins, where my husband was treated, still does them but our MO says they are "controversial" in the HNC service. A ND is not guaranteed to get rid of all the cancer, in any case -- if it did no one who has had one would have a recurrence. Unfortunately, this is not so.

The non-Hopkins ENT who did my husband's tonsillectomy and d'xed his cancer (she herself had HNC as a younger woman) said quite bluntly that doing extensive surgery with potential permanent side effects just to "see" if a cancer is gone (or appears to be gone, depends on how good the pathologist is!) is not an adequate reason to do it. She may be a minority voice, but she has been down the HNC road and most ENTs have not.

Gail

I ditto all that is said about the neck dissection. My husband had his November 1 after his 35xIMRT and 35X Tarceva/Cisplatin. We were told upfront by all of our docs at Hopkins that he would have it post treatment and we are glad that he did. One of the nodes the surgeon was concerned about which he removed still had live cancer cells in it. The surgery was easy - he feels great - doing his exercises etc. Still has a little numbness in his neck area but we can deal with that....good luck to you!

Hi Marty,

We were very shocked to hear about the neck dissection for my husband. I really think we would have gotten the second opinion, but since the lymph node did not get any smaller, that is the main reason he is going ahead with the dissection. I had read that a lot of the hospitals do not do the surgery any more. I did, however read that the University of Florida was still recommending it, if the lymph node was over 1.5 cm after treatment. His was 2 cm when he started, and still is, even though the doctor said it looks like it has dead cells inside from the CT scan.

I am so worried that they might still contain the live cancer cells, and what they would have to do next. Since you stated that your husband had the live cancer cells, what did that mean. Is he done, because they are gone, or is there more chemo now, or something else. I am not looking forward to the surgery, because I am so worried they will find it is still there.

I am glad to hear that the surgery was easy, and he feels great. How long was your husband in the hospital? I hope it is that way for my husband too. He has done so great so far, hopefully this is the easy part.

Thanks for the info.

Sharon

Hi Sharon and Joe,

Just wanted to wish you luck with the neck dissection and chime in that the reasons the ENT presented for doing it makes sense clinically. Like others on this post Jack had his done before the treatments because that was appropriate for how his cancer presented. Deciding which treatments are appropriate should be very individualized to each patient. Jack felt the neck dissection was the least difficult of all his treatments, most of his negative side effects came from the radiation and chemo. He did have muscle weakness in his shoulder that resolved by doing his exercises. The numbness in his neck persists but has gotten better over time.

Other than being careful on how much luggage he's going to carry on your trip he should be okay. The staples and drain comes out in a week usually and incision scars typically heal well. You have to be right on top of Jack to notice it now.

Since it's needed, having it done before Christmas - and the new $1000 deductible makes good sense. There's also a lot to be said for peace of mind of getting that node out of there since it hasn't reduced with the other treatments. The main thing is that your doctor is explaining rationale that makes sense to you. Go for it and look forward to that trip.

Regards JoAnne

Sharon,

Did your ENT say that she was going to do a complete or partial ND? Did I miss that?

Hi David,

She is doing a partial, said she was going to do levels II through IV, and hopefully she will not have to touch the muscle, nerve or jugular. She is pretty sure the nerve will not be involved.

I still have my reservations, and every day I still think of Moffitt. He is scheduled for surgery next Tuesday (was suppose to be this Thursday, but just got changed), and she told us he may only be in overnight, or 2 nights at the most (in her opinion).

It that node would have just shrank, I know we would be going to Moffitt for a second opinion.

thanks,

Sharon

Did anybody ever respond to the question about what it means if a node is positive? I'd like to know, too.

Without reading the entire post, what question are you referring to? A node that tests postive usually means it's cancerous if that's what it was tested for. Does this answer your question?

If there is a positive node in a post-treatment ND, what does that mean? For example, my surgeon sort of suggested that if there was a positive node that it wouldn't be a big deal. After its removed, what are the implications? Is there a greater risk for downstream disease?

Hi Sharon,

Hope all is well. I don't see any follow up from this thread. Did your husband have the ND? how's he doing? what were the results? Let us know.

Thanks