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?