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