I have had the surgeries your husband is going to have, but not all at once. Lymph node biopsy was positive for SCC. Then removal of that lymph node in July was HPV+ and no spread to surrounding tissue. In August removed my tonsil & base of tongue biopsy. Both negative. Then last week the neck dissection to see if any other lymph nodes show microscopic cancer cells. The neck dissection has not been a bad recovery at all. Just a bit of a stiff neck & swelling . Now the tonsillectomy was a whole different story. Ouch! Days 5-8 after surgery were terrible. My Dr is only working on my right side. They said it doesn’t jump sides & recovery would be easier. I am 71F so age is a factor for splitting up the surgeries. Also we thought each one would produce the primary. Nothing yet though. If the neck dissection comes back negative, I move to a watch status. No radiation therapy for now.

Hello @lgettys and welcome to Mayo Connect. I see that @judiroe, has shared a lot of her experiences with you already. I hope that your husband's surgery goes well. Is the surgery today?

In your post, you mentioned, " I can’t help wondering if we should have gotten a second opinion..." Please be aware that even after this initial surgery, you can still seek a second opinion regarding follow-up procedures and treatment plans. I have had three surgeries for a rare form of cancer (not the same as your husband's), and my first two surgeries were done at a local hospital with an oncologist. When I reached the point where I needed a third surgery, I drove a distance to a university medical school for another opinion on the type of surgery needed. For me, it was a good decision, and my hospital stay and recovery time were lessened.

If you decide, down the road, that you would like another opinion, I recommend that it be at a well-known cancer center, with a doctor who is highly experienced in this type of cancer treatment. Mayo Clinic has three locations and would be a good place for a second opinion (here is a link with information about appointments http://mayocl.in/1mtmR63.) If an appointment at Mayo is not an option, for any reason, then another research-oriented medical center would be a good option.

On Mayo Connect, there is a support group for Head and Neck Cancer that might be helpful to you. Here is the link to those discussions: https://connect.mayoclinic.org/group/head-neck-cancer/

I understand that the beginning of a cancer journey is confusing as well as frightening and I appreciate you reaching out for information and support. You will find a lot of encouragment and support on Connect. Will you post again with any questions or concerns, and let me know how your husband is doing post-surgery?

hi, my initial diagnosis was unknown primary. they thought it metastisized from somewhere (that they couldn't find) to my neck. I had vocal cord paralysis and needed a thyroidectomy and partial neck dissection of lymph nodes on the right side. recovery from the surgery was not difficult. after healing from the surgery I had targeted radiation on my neck. by the end of the radiation my skin had broken, swallowing became difficult and took some time to heal. eventually some small nodes showed up in my lungs and they felt this was where the cancer originated and targeted the chemo/immunotherapy treatment accordingly. tumors returned in my neck and my airway narrowed and I needed a trachestomy.

Hello,
Thank you for sharing your story. I know how overwhelming this is and please know that you are not alone.My husband Joe started this same journey in February. He has HNC SCC CUP He first had tonsillectomy. They did not find primary. Very painful, about 3 weeks recovery, insist on pain meds. Next he had neck dissection to get rid of mass which was in his submandibular gland, also removed lymph nodes and a tiny part of jaw. This surgery hurt him the least and he recovered fairly quickly. They still did not find primary. We then went to Mayo Clinic for a second opinion. Mayo did TORS still could not find primary. TORS very painful like tonsillectomy . He lost 25 pounds total from 3 surgeries.
They were recommending targeted radiation and standard chemotherapy.Seven weeks. We decided to come back to Georgia for this. The 3 surgeries were a pain but the goal was to find the primary which we did not but since they eliminated these areas the radiation could be targeted. It was 10 minutes a day and he says not too bad with very few side effects. The chemotherapy was once a week 6 hours. He brought his iPad and watched movies.Took nausea pills and slept a lot. I left him be and did stupid stuff like mindless mall shopping, coffee with gals or baked on the chemo days.
Now a month out from finishing these he is regaining taste, strength, all motor movement and only has to shave on one side of his face. He can spit again and his smile is less and less crooked. We will have a follow up in 3 months.
The Mayo second opinion cost us about $14, 0000 but worth every penny for our peace of mind. We came home knowing that we had excellent care here and trusting the process.
Try to stay in the 24 hours you are in, be supportive and take care of yourself. It can get tense and is overwhelming but thank goodness for modern medicine. Namaste 🙏 MAC