I got my ENT to better explain his surgery option to me, and we are going for another opinion in a week since the docs don't agree on what treatment.

The surgery would be to remove the lymph nodes of zones 1, 2, & 3 as a preventive measure. And of course biopsy them after. The scans were clear but the doc says that if this cancer spreads, that is where it goes, so we should remove them just in case. At least now it makes sense. I thought he just wanted to randomly grab some for testing.

He is planning to avoid cutting nerves, etc.

I am sure there is a lot I should know about recovery, if we go this route. What is it like? What is hard to do? How bad is the pain? (I am a wimp.)

I don't like surgery, but it seems like it would cause less long term damage than the radiation.

Thanks for any tips and information!

IMO you need another opinion, one from a CCC. Look ENT's are trained to CUT so that's what they will recommend and they did so with my Dx but Moffitt, a CCC, said NO NEED for a ND since they recommended concurrent rad/chemo with the rad as the real cancer killer. I'm not sure that a ND will prevent the recommendation of rad/chemo so do get another opinion and go right to the top and get one from a CCC BEFORE you let anyone cut you up.

Hi Kristen,

I sit here ten weeks post TX. I had a selective neck dissection Feb 7th., then chemo/rads 6 weeks ending 4/24. I sought treatment at Johns Hopkins. Interestingly enough, my treatment plan went from chemo rads only at a small local hospital to neck dissection followed by chemo/rads afterwards as opposed to the opposite. I'm convinced had I not gotten the surgery, I would still be facing it regardless.

As it turned out, when they went in to remove the cancerous nodes, the cancer was very aggressive and invasive and the surgery was much more complicated than originally thought. The Team agreed that it was the best move based on the result. I had two large nodes removed along with 24 additional nodes (non cancerous) on the left side.

That being said. The road to recovery from the surgery is a long one, not even withstanding treatment which is brutal. Nerve issues/trauma as well as longer term side effects like lymphedema affect me. I sit here as I write in discomfort. My left shoulder was compromised as the tumors had wrapped themselves around muscles, blood vessels and nerves in my neck. I still have rather difficult issues with my left shoulder and arm. Time will tell if it ever returns to somewhat normal. Numbness, pain, cramping and other maladies are the result of the surgery but they are pretty normal. Take the surgery, a month or so to heal and then radiation and chemo and the cumulative effect is sobering.

I would definitely get a 2nd opinion. The key is to feel comfortable with the team treating you and it really should be a team.... all in agreement and working to make sure you survive with the best chance at the long term. A CCC is the best place to seek a 2nd opinion. They work in a team setting and see the most cases.

Again, I'm sure, had I just gone with just chemo/rads as originally recommended, I would have been facing surgery anyway. I'm also sure, based on what I experienced on the local level, I would have stood less chance at survival. It seemed as if the doctors didn't quite know what the other was doing nor did they care. When I went to Johns Hopkins I had an ENT/Surgeon, a MO, RO, Speech Pathologist, Oncology nurse manager and even the head of the Sidney Kimmel Center in the room with me. They had acquired all the previous test results, had ordered other tests prior and knew my case up to that point in and out. I was poked and prodded in the first 25 minutes more than I had been the entire time prior locally. They were very confident they could eradicate the beast in me. Very soon, I'll know if they did as I'll be scheduled for my first post Tx scans soon.

All that aside, surgery is rough, recovery is challenging and treatment is brutal, but it's a small price to pay for your life.

Positive thoughts and prayers,

"T"

I had a partial neck dissection and partial glossectomy, followed by rads and chemo. I found the surgery to be a lot easier to recover from than the rads and chemo. In fact, if all I had was the neck dissection and glossectomy I could have gone back to work in a month. It was the rads and chemo that really took their toll with me.

I did go to one CCC and I would never go back to that one. My next second opinion may yield better results. Right now I trust my docs, but even the two tumor boards could not agree, which says this really is small and borderline. They have no real evidence either treatment is necessary. Both are preventative. So I am just learning what to REALLY expect from this option.

I went to Moffitt Cancer Center in Tampa, FL. My Surgeon there told me....it was up to me if I wanted to have the ND. I had the tumor removed from the side of my tongue. He explained the ND to me, he would make an incision in my neck take out lymph nodes and have them biopsied. He also said he'd rather be safe than sorry, cancer cells are so small the CT Scan wouldn't pick them up until they are the size of a nickel.

I had the ND I have no major problems, if my neck stiffens I massage it everything is fine afterwards. My face and neck look the same as it did before the surgery. He made the incision in the crease of my neck people can't see it.

I'm glad I had it because I would be second guessing myself.

What bothers me is the scar tissue in my tongue where the tumor was taken out.

Take care,
Connie

They probably can't agree be ause you are unusual... Most tongue lesions are non HPV. I would be inclined to treat it like it wasn't HPV + - and have surgery first - hoping it got it all and possibly saving rads and chemo - in case you face a recurrence. Hugs.

Thank you, this helps very much.

Could you send me a pic of your tongue lesion? Mine is far back as well. Thank you

:)Hi Kristin, I had a SCC T1NOMO and the first opinion was radiation, surgery with 1,2,3rd tier dissection, and rads again. The second opinion, 3 weeks later, was a stage 2 NOMO. Surgery was 07/03/13. Partial glossectomy with neck dissection. Pain was well controlled, I had a NG tube as swallowing was somewhat difficult but I only for a couple of days. I recouped at home, kept my neck raised and a fan blowing on the incision. This really helped and also a cocoa butter lotion on the neck soothed it. The stitches disintigrated by the follow up appt. I start radiation Sept.3rd.
My Best To You...Keep in touch.