Hi @joemae1, I'd like to add my welcome. I agree with @alpaca, you don't want to get to far ahead of yourself worrying about what might happen. You will be in good hand with the experts at Mayo Clinic. I'm tagging @msherfinski @jeffk @loli and @deborahe, who can offer their experiences along with @alpaca's. You can read more about their experiences here:
- Laryngeal cancer (recurrence) https://connect.mayoclinic.org/discussion/laryngeal-cancer-recurrence/

For preparing to visit Mayo Clinic, especially in these times with COVID-19, I recommend you also review this discussion and ask any questions you might have:
- Tips: Traveling to Mayo to get medical care safely during COVID-19 https://connect.mayoclinic.org/discussion/your-tips-traveling-and-getting-medical-care-safely-during-covid-19/

Having cancer of the head and neck region is scary. I completely understand. The doctors at Mayo Clinic will explain more about what YOU can expect. Every person is different. When do you go to Mayo?

My bf has neck and head cancer squamous cell carcinoma hpv 16.
He was diagnosed March 2020.
Back down his throat on his tongue and it had traveled to the left side of his neck to 5 lymph’s that ended up clustering together.
He had the tumor extracted from back if his tongue. And both sides of his neck opened and lymph nodes removed.
He did not have a feeding tube and it was very difficult to swallow but he got through it. This way he did not have to learn to swallow and all the other things that can happen with a feeding tube. And yea he lost weight.
After the surgery he had 6 weeks of cisplatin(chemo) and 6 weeks of proton radiation on the left side of his neck. He list all of his salvia and taste buds(nothing has come back as of today. He has to use a very strong prescription fluoride on his teeth forever and he has to put lotion on his neck 3 times a day so it doesn’t get hard and leathery.
When he completed his treatment he was given a 98% cure rate. We were so happy. Then he went for his 3 month petscan.
Not good news, his cancer metastasized to one lymph node at the end of his windpipe(inoperable). He had I believe 6 weeks of radiation on his chest and also started sept 2020 on Keytruda which is a chemo immune therapy treatment. It’s been a year. It’s been tough. Keytruda is the only option they have. Umm, he has all the side effects which make everyday difficult. His voice is different, stomach aches, lose of weight (he’s lost about 50lbs), he’s had diarrhea for 5 months, his balance is really bad( he needs to sit if you want to talk cause he has to concentrate when standing not to fall over). Shortness of breath, back aches, muscle cramps, feet hurt, infections under his nail beds on 2 fingers, melanoma(which runs in his family history, which he see’s dermatologist every 3 months), huge anxiety at times.
He was told he needs to stay in the plan. They will be taking him off of Keytruda sept 2022.
We would like to travel, but he really couldn’t take a long car or plane ride.I think the hardest thing for him, is he can’t do what he used to do. He’s 6’4” was 240lb, 34” waist. Ate the perfect diet, worked out and looked like Superman and he was 67 when he was diagnosed.
He’s has a few times that the petscan lit up with the ground crystal(I believe that’s what they call it).
Because the cluster on his neck leaked onto his blood stream, that how it metastasized to his chest.
He has a huge fight, and he doesn’t give up easily. Snd we are in this to the end. Not sure what will happen in a year.
All o lnow is he was told if he goes off Keytruda now, his cancer will take over.
So he has head and neck squamous cell carcinoma hpv16. He got when he was 26 years old from genital warts. That virus laid dormant for 42 years.
It’s very aggressive, so get in right away. If caught quicker he would have been a different ballgame.
Putting in my prayers, stay strong, you got this.