Neck Dissection Opinions

You have no idea what your words mean to me. Surgery is set for June 11. I can cancel if I choose. I had radiation/chemo 10 years ago for Stage 4 Base of tongue. I don’t drink or smoke so I couldn’t figure out why I got tongue cancer that they say wouldn’t be HPV like the Base of Tongue. All I know is cutting 1/3 of my tongue hurt way way less than the tumor. I had no idea radiation could be the cause of this cancer. So my question to you is do you regret the neck dissection? Should I go for it if immune therapy is not an option ? We seem to have walked similar roads.
The fluid now building under my chin looks like 2 ballsacks. 🤣 it’s funny /not funny.

Yeah @gypsylaura,

I am having issues with my reply on this site, so I put it in a pdf document to see if it works as I have been trying to reply for the past half hour and am trying this as a last resort.

Hello, I am so sorry about your 4th cancer. My husband Joe, had a submandibular neck dissection April 28. They removed a ping pong size tumor and lymph nodes down to collar bone. Tumor was wrapped in nerve and around jaw bone so they cut a bit out and clipped a nerve. He was pretty rough the first week. His smile is crooked and eating was tough. His had to get fluid drained 2 times in 10 days and wore a jaw bra. We kept the wound cleaned twice a day and used ointment on the scar. Three weeks out he looks good, crooked smile, can’t whistle but glad to have tumor gone. Hope this helps. Also slept propped up first week. It’s a journey.

I found having a surgeon who is a thyroid specialist very reassuring. He has seen it all, probably. If yours is a specialist in head and neck, it may be worth another conversation. And...what is the alternative. Often, we have no alternative other than surgery. I want the cancer out and I want to heal and enjoy life. Peace.

Hello @gypsylaura, so sorry to hear about cancer #4....you've had more than your share. I was lucky enough to have my ear canal SCC surgery at Mayo Rochester in 2012. The subtotal temporal bone resection by my ENT surgeon was concluded with a select neck dissection done by Dr. Eric Moore. Multiple lymph nodes and superficial parotid salivary gland were removed, in addition to a portion of facial nerve, due to tumor involvement. I have had no ill effects from that part of the surgery other than the dry mouth which was also affected by radiation. The facial nerve was anastomosed so I have abnormal nerve control of one side of face but much better than total paralysis as it was after surgery. Certainly I would not hesitate to do that surgery again if it was essential to cancer free survival.
It sounds like you might benefit from another opinion on your treatment plan. Is there a large referral center nearby or a cancer center or teaching hospital? We drive 10 hours to Mayo for followup all these years because their level of care does put the patient's needs as the primary concern. You must advocate for your own healthcare, as I imagine you have done in the past. Perhaps a more skilled surgeon is what you need?

You have no idea what your words mean to me. Surgery is set for June 11. I can cancel if I choose. I had radiation/chemo 10 years ago for Stage 4 Base of tongue. I don’t drink or smoke so I couldn’t figure out why I got tongue cancer that they say wouldn’t be HPV like the Base of Tongue. All I know is cutting 1/3 of my tongue hurt way way less than the tumor. I had no idea radiation could be the cause of this cancer. So my question to you is do you regret the neck dissection? Should I go for it if immune therapy is not an option ? We seem to have walked similar roads.
The fluid now building under my chin looks like 2 ballsacks. 🤣 it’s funny /not funny.

I'm sorry you have had to go through so much. Every case is different. I underwent a radical neck dissection nearly 19 years ago after chemo and radiation. I'm surprised at how much more people are aware of the issue and what is involved. Back then, doctors' experience with it was very limited. As it turned out for me, the neck dissection may have been unnecessary as the other procedures continued to have an effect afterward. It wasn't fun, and there are definitely consequences. Any neck procedure runs the risk of damaging baroreceptors that control your BP, so you may already be at risk for that down the road. Most of the swelling issues went away, and though I look different due to the hollow spot in my neck, I don't give it a thought. It's a battle scar and I won. Should you decide to go through it, definitely seek therapy to address all the issues you will face. Hopefully, you have a support system at home to help you through it. Good luck to you.

Thank you. You are both lucky to have each other. I don’t know if I’m still tough enough to do this alone. I’ll try.