Seeking Support: First Mayo Appointment for Husband's Cancer

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.

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. Concierge will be able to share a lot of information with you about things in Rochester and the clinic. If you would like general information we would be glad to help you. We also have a service at Mayo that would be able to do the booking side of things for you (hotels, flights, shuttles and car rentals). That would be, Mayo Patient Travel Services and they can be reached at (866) 551-3392.

That's incredibly helpful; thank you for sharing your experience! It's really good to hear about the timeline others have experienced. It's also reassuring to hear about the wonderful care you received from the nurses. The little cards are a brilliant idea! Thank you so much for all the advice and for sharing your experience—it helps a lot.

Thank you so much for sharing your story and your encouraging words! It's incredibly helpful to hear from someone who has been through a similar experience. We really appreciate you sharing your timeline. It's also reassuring to hear about your positive outcome and how well you're doing now. We realize it will be a challenging time, but hearing about your experience, along with that of others, is giving us hope. Thank you again for your honesty, your support, and for sharing your journey. It means a lot to us.

@luvnsunshine I would come with a list of questions pertaining to your situation - treatment options, risks, major side-effects, likelihood of success, process, etc. Don't be afraid to ask for clarification of any statements or responses.

The best thing we did was record each session because we knew that there we wouldn't hear. We, of course, asked the doctor, nurse or PA if we could but not one ever objected.

It's a tough process, and gets mentally and physically very difficult. Treat every provider with respect as they are there to save your husband's life.
I have posted this a number of times, but folks seem to feel it is of value. So here it is again.

I had SCC on the base of my tongue and a couple of lymph nodes in the fall of 2020. I had chemo and proton radiation, since have had multiple cleans scans.

I wrote a blog during my experience (non-revenue generating) if you would like to review it, the link/URL is below. My wife, Suzy, wrote a wonderfully insightful post called lists and non-advice advice.
https://stevefleurysblog.com/2021/01/05/lists-and-non-advice-advice/
You can read the entire blog at:
https://stevefleurysblog.com/2020/10/29/part-1-the-beginning/

Hi @luvnsunshine. I went through this just last fall, but some of the details are already fuzzy - after going through a mostly smooth experience I have vague recollections of being a bit confused when I was at your stage. One thing off the top...In all of our Rochester trips we never had issues booking hotels, so I wouldn't worry about booking things in advance of knowing you have appointments.

If I had one bone to pick with Mayo, though, it would be their scheduling. The good thing is that they take care of everything for you, the bad thing is that they take care of everything for you! Often you will see appointments popping up and moving several times a day without anyone ever reaching out to you to see if it works for you. Once you are there full-time getting daily treatments it's not a big deal, but until then it can be annoying. The good thing is if you give them a call they will be very friendly and accommodate your requests, so if they ever schedule something that doesn't work for you, don't be bashful about asking them to change it.

I would expect you to go back home after your initial consultation. After that, they will work with you on when to start treatments...timing will depend somewhat on which treatment options you and your physicians decide to take. I would plan in general on beginning therapy within a couple weeks.

Once you are there for your daily treatments, they will give you info on some special hotel arrangements and on Hope Lodge, which is completely free and just a short walk from the Mayo. I was blessed to be able to stay at Hope Lodge for 6 of my 7 weeks there, and can say it was a wonderful place to be...definitely recommend it if you are able.

Hope that helps a little.

-Mark

Hi Mark,

Thank you so much for sharing your experience and the helpful tips! This is exactly the kind of information I was hoping for, and it's really put my mind at ease about the hotels. What you said about the scheduling is especially helpful. I'll admit, the scheduling is another thing that’s been giving me a bit of anxiety, so knowing that it can be a bit fluid and that it's okay to call and request changes is great to hear. It's also good to know that we should likely expect to return home after the initial consultation and then come back for treatment, probably within a couple of weeks. That helps with planning, too.

The information about the hotel arrangements and Hope Lodge is fantastic! We'll definitely look into that when we're there for the daily treatments. It sounds like a wonderful option.

Thanks again for taking the time to share all this. It's incredibly helpful and has taken a load off my mind. Your willingness to share your experience is so appreciated.

Wow, thank you so much for all this incredibly helpful advice, and for sharing your blog! Recording the sessions is such a wonderful idea – I honestly hadn't even thought of that, and while it feels a little daunting to ask, it makes so much sense considering how much information we'll be bombarded with. I'll definitely come prepared with a list of questions. Your blog looks like an amazing resource, and I'm really looking forward to checking it out, especially the post by your wife. Thanks again for your support and for sharing your experience so openly. It means so much, and I'm truly grateful for your kindness.

I had my care at Froedtert & the Medical College of Wisconsin Cancer Clinic in WI and there were two things during my cancer journey that helped me keep track of everything from diagnosis/treatment options to my medications or pain meds.

One, I bought a Philips VoiceTracer DVT1160 ($42 on Amazon) to record every appointment with every person I was in contact with so I could always go back and play it so nothing was missed. Never had any of my doctors or others and I have seen many over the years not allow it and some actually were glad, so important information was not missed. I have done this in 2008 with tonsil cancer and in 2024 for my tongue cancer with included a Modified Neck Dissection.

Second, for meds I used this attached pdf to help keep track. Sounds like Mayo does this already, but it doesn't hurt to have it.

Also, I would ask them about getting a speech/swallowing therapist for best results for long-term effects of swallowing and speech. I actually would try to get one now so you can build up those functions before it gets traumatized from all the treatments.

Hope this helps ease some of the anxiety and best of luck with the journey.