Husband diagnosed with tonsil cancer: looking for tips and support

I have surgery next Thursday to remove the residual primary and to do a lymph node dissection. Also am HPV 16 positive as determined by a biopsy on my tonsil
After it was removed. Dr is hoping there will be no radiation or chemo. I will be in the hospital for two nights or not released until I can swallow. I’m more worried about pain management than other problems because the tonsillectomy was just so painful. I lost about 6 pounds but have gained most of it back and my throat has healed well. I do dread this next round but if I don’t have chemo and radiation I will be so very fortunate. Good luck to you!

@joy345 now we have solid information as to type and stage which greatly improves how to attack and treat this cancer.
Although no head and neck cancer treatment is simple or easy, his complete diagnosis has light at the end of the tunnel. Thank you for the update.
Can you continue to keep me posted as he proceeds? I will keep you both in my thoughts.

Hi, had TORS on 13 June for HPV left tonsil and left neck lymph node. Mayo Jax.
Surgeon mentioned they lost a person to bleeding about 10yrs ago. Now they make sure to cap all blood sources. My surgery was supposed to be about 2.5 hrs but lasted 2 hours longer because there was an artery that went through my throat into he tonsil area. They had to cut it and then pull it back through the throat and cap it to remove the risk of bleeding in my throat. They said this was very rare. Pathology showed negative margins around the tonsil but the Lymph node was 3.0cm and had a extranodal extension. So have to start radiation chemo next week. But only to the left neck, not the throat, and 60gy instead of 70gy to neck and throat.

Right after surgery wasn't too bad. Night was tougher. Hard to swallow. My cut went from below left ear down to just above adam apple. Was supposed to be released next day but they made me stay another day because of the extra surgery. Pretty much liquid diet for first week. Lost 15 lbs. Much better next week. Eating and drinking a bit weird because of what was removed. Currently, throat is slightly sore and neck seems stiff. Longer recovery may be due to longer surgery.

What other questions do you have about the surgery?

I had exactly the same issues. They couldn’t tell if the encapsulated tumor was cancer because it was also necrotic. They recommended radiation/chemo treatments in succession. Just had my follow-up PET and I still have residual cancer and it has metastasized to my lung. I feel worse now than I did before treatment and still can’t swallow much. Ain’t that a kick in the pants? Don’t know what the next recommendation will be. Just stay strong. Don’t let worry take over your life. I have and it’s not helping me at all. 🙏🏼

Are you finished with your treatments yet? I had Monday through Friday radiation for 35 days and chemo once a week for 5. I just had my follow up PET and it’s showing residual cancer and that it metastasized to my lung. How did yours pan out?

My follow up is Aug 21st. I have heard that a PET showing residual activity is common.
I am sorry to hear of your news. What is the next step your Drs recommend?
I had the same treatment as you. Mine ended May 5th. Honestly I feel I am getting better and stronger. It’s a slow process for sure.
Hang in there. My anchor is Jesus Christ and the wonderful family he has made me a part of.

I gave worry over to God years ago. When I became a follower of Christ, I started reading the Bible in the book of Job. Having dealt with cancer, I can identify more with Job. At any rate Job and his friends asked all the why me and why you questions. God must be angry…. All the arguments you can hear today about the fairness of God. Job finally discovered that this life was just a piece of eternity. And God made all of us eternal. So his conclusion? Tho He slay me , yet do I trust Him. I believe that and know we are all temporary for this present body. God has the plan for all of us and it is perfect.

How did you handle the pain after surgery and how is the pain now? Do you still need pain meds?

I humbly thank everyone in this group for the love, care, support, experiences, and suggestions from this wonderful forum.
I will post details on the journey @hrhwilliam. Thank you, Sir, for being kind.
Thank you @sandralea58 and others.
I agree with what @davehutsell that the Lord Jesus is our Strength in this journey, and He gave us friends, families, advises, and this wonderful forum to feel we are not alone. Honestly, I was trembling with fear of the unknown, side effects and mortality. Sometimes, my husband is depressed, and I understand why there’s so much delay on the appointments/scheduling. My husband is not prepared before. This week, I felt he is prepared to handle what’s ahead.
Next week will be the final interview on the TORS surgery of these 2 hospitals and we will decide which one surgeon to choose. We know it’s a 5- or 6-hours TOR with neck dissection and we were told lymph nodes will be taken out not only the 2 shown on the PET/CT scans but also surrounding lymph nodes (maybe 10 or more).
The 1st hospital will do Surgery and then radiation, if necessary, based on what they found out. The 2nd hospital will do Surgery and then be part of a Clinical Trial of De-escalation which means only 6 Chemo with Immunotherapy. We will find out more details.

Thanks again and may the good Lord bless us all.

Did you have a PEG or feeding tube after TORs Surgery? Is this necessary? Or this is needed during RT (radiation treatment) just in case you have swallowing issues.

We were told that it takes a month after surgery before radiation? Is this what you have?