Seeking Support: First Mayo Appointment for Husband's Cancer

That's great information, thank you! It's very helpful to know that the hotels are typically flexible with Mayo's schedule changes. We'll definitely mention at check-in that we're there for Mayo Clinic appointments. The tips about the connected hotels and the parking options are also much appreciated.

My husband is struggling quite a bit with anxiety right now, especially regarding the wait to begin treatment so we're hopeful to get a sense of what the typical timeline (knowing everyone’s case is different) is at Mayo. From your experience, have you found that treatment at Mayo typically starts *immediately* after they present the treatment options, making it best to book more than just a few days in Rochester? Or is typically there often a period of time *before* treatment begins, allowing for a return home and then a trip back to Rochester? We're trying to gauge how long we should plan to be away. Thanks again for the helpful advice.

Thank you so much for the helpful information! We really appreciate the links to the Visiting Mayo Clinic support group and the Concierge Services. Yes, my husband already has his patient portal account set up, but the Concierge Services sound fantastic for handling the logistical details. We'll definitely look into those resources. Thanks again for your help!

My surgery was scheduled for two weeks following my initial big team appointment. So I went home and had time to prepare. I read all the info they gave me. Set up my power recliner. As I suspected I was more comfortable sleeping more upright. Ate all my favorite crunchy foods that I knew I couldn't eat after surgery. I wasn't sure if I would be able to talk right after surgery so I bought a small wipe off board to take along. But they gave me one at St. Mary's hospital. I also downloaded some free speaking software to my tablet and laptop just in case. By the second day I could speak just fine but you may wanna ask them about your timeline. My cancer was on the underside of my tongue and about 1/3 of my tongue was replaced.
I can't say enough about the nurses. Each and every one was wonderful. They don't just take care of you, they care FOR you.
I also made some little cards to have only bedside table that said "Thank you, I'm in pain, toilet". Just so I could show the card and not have to write it every time.
I had a private room. I'm not sure if they all are or not. Hotels and restaurants are across the street.

Hello . I was diagnosed with SCC HPV 16+cancer of base of tongue March 2023. Stage 3. The Good news is HPV 16 is a very treatable cancer. I am sure the earlier you start treatment the better. The best I can remember it was about 2 months from cancer diagnosis to my TORS surgery. Then another 6 weeks or so before Radiation.
If this is any help here is my story....I am 58. I had TORS surgery April 2023 to remove base of tongue 3cm tumor ( partial glossectomy )and lymph nodes through right neck dissection. 2 of which had cancer. I had 30 rounds ( ending July 2023) of Proton Radiation to "cleanup" any cancer that may have been left behind from HPV16 base of tongue and Few Lymph nodes . I opted out of any Chemo treatment. l was very worried about going on a feed tubing , Dysphagia and Not being about to swallow (eat or drink). It was a struggle to eat during radiation and a few months after and I FORCED myself. I lost my appetite and everything had no taste. I ate soft creamy foods for about 3 months once radiation stopped and then slowly back to normal foods. As far as today 18 months out of treatment I can eat and drink about anything I want. My taste buds are about 90% , My throat mucositis has almost gone away, Saliva production 90% and My stamina is back to about 90% . I will continue to have a throat scope and CT scan every 3 months for two years. So far no evidence of cancer remains.
Make no mistake this will not be a fun few months but things will be much better for him in the next 6 months or so. Some things may not taste the same, He may have some slight neck or throat discomfort and a little less energy but you will be alive. I take the time now to thank God every morning when I get up.