Neck Dissection Opinions

Hi @gypsylaura Welcome to the head and neck group. I saw your post yesterday however I have no experience with neck dissection so I let the post ride for a while.
You certainly have had a rotten time with this cancer in your life. It now seems your “healthcare” team has limited interest in your quality of life while having great interest in cutting you to pieces in search of gold. That point may be a frank discussion you should have with them. What is their goal? Are they just digging or do they have a plan? Do they have any concern about you as a patient? Should you seek help elsewhere?
When it comes to our healthcare, we are our best advocate. Do not be afraid to ask the difficult questions, calmly, sincerely, non-accusing if possible. This is your life, not the doctors.
Sometimes, likely more often than we want to believe, due to insurance, busy schedules, surgery plans, or whatever, the patient’s best interest is not the doctor’s best interest. Not to make a joke here but the reality is, half of all doctors are below average. When it comes to your personal health care, seek out the eagles rather than wasting time with the turkeys.
Let’s see if someone in the head and neck group has experience and advice with neck dissection who can answer questions for you. We must get this cancer out of you once and forever.

Neck dissection, also known as lymphadenectomy, is a surgical procedure to remove lymph nodes from the neck. It's typically performed to assess for or treat cancer that may have spread from other parts of the head and neck. The surgery can involve removing a few nodes, most on one side of the neck, or all of them, along with surrounding tissue.
Above from Google Ai
I think neck dissection can be very complex or moderate depending on why and what, etc.

I had neck dissection to remove 2 lymph nodes as part of thyroidectomy, fall 2024, and I am doing fine. I have read some people have many lymph nodes removed.
I am sorry you are going through all this. It is extremely difficult with recurring cancer and not trusting your surgeon. You can perhaps get a 2nd opinion from a top cancer center. My surgeon is a top thyroid surgeon so I trust his judgment.
Take care.

Thank you. You are the first positive I’ve heard. I appreciate it.

I have an appointment with an oncologist next week to discuss other options. I’d like to know about immunity therapy or other treatment. I understand neck/tongue cancer has limited options. My throat this morning looks like a bullfrog. Yep my Glory days have passed me by lol. Thank you for caring and responding.

The surgeon is Dr Anderson with OSHU in OR. He’s supposed to be good but I’m scared surgery will off me. But I’ll keep your comment of doing fine in my heart. Thank you.

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?

Hi @gypsylaura,
I was diagnosed with Tongue cancer on my left side of my mouth on March 1, 2024, and had a left partial glossectomy with a radical forearm free flap surgery on April 3, 2024. It also included a modified radical neck dissection. This one was not caused by HPV and was most likely from too much radiation from the first cancer (2008) as it is literally adjacent to my left tonsil. As others have said here is get a second opinion and make sure it is from a cancer clinic.
I had hesitated with getting the neck dissection too since I had no cancer in any of my lymph nodes on my pet scan, but I went to the top two cancer clinics who specialize in the head & neck cancer in WI, and both had proposed the exact same treatment option, so I felt comfortable. It was really to make sure the lymph nodes and other sections of the neck all had clear margins thus, I avoided any radiation and chemo additional treatments especially since I had both back in 2008 with my tonsil cancer. In addition, I don't know if I would have accepted any more radiation either since it probably was the cause of my tongue cancer.
Time will tell if it was the right decision in getting the neck dissection. I definitely have some Neck Fibrosis from it so far in which I have to get PT for.
Good luck on your journey and God speed.

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.

Oh and it’s at the Head and Neck cancer hospital in Portland Oregon that I take a service to that’s 4 hours from me.