1. < Head & Neck Cancer

Seeking Support: First Mayo Appointment for Husband's Cancer

Posted by luvnsunshine @luvnsunshine, Feb 4 4:17am

Hi everyone,

My husband and I are feeling a bit anxious as we prepare for his first appointment at the Mayo Clinic in Rochester, and we'd be so grateful if anyone could share their experiences. Mayo has confirmed they have all his records, including pathology slides and PET scan images.

We're trying to get a sense of what to expect in terms of the timeline for treatment. We understand his first appointment will involve meetings with several specialists (surgery, medical oncology, radiation oncology, speech, etc.). At his current clinic, the process has been quite drawn out, with each appointment taking several hours and spread out over time. Since this is a second opinion, we're hoping for a more streamlined approach at Mayo.

My husband was diagnosed in early January with squamous cell carcinoma of the right tonsil with mets to bilateral cervical lymph nodes (P16 positive) after a lymph node removal and biopsy. A PET scan in mid-January pointed to the right tonsil and possibly the base of his tongue as the primary site.

Any insights you can offer about your first Mayo appointment, especially regarding the scheduling of treatments, would be incredibly helpful and would really ease our minds. Thank you so much for your support.

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

luvnsunshine | @luvnsunshine | Feb 22 5:17am
In reply to @michgirv "Just wanted to pop on to say, you're in great hands with Mayo. My husband has..." + (show)
@michgirv

Just wanted to pop on to say, you're in great hands with Mayo. My husband has stage 4 parotid cancer and we just returned home from chemo/radiation treatments. The whole team was kind, explained things well, attentive to answering messages and phone calls. I felt, for the first time, that the medical community had our back. I have a systemic form of vasculitis, heart failure and have been fighting for my care for 30 years. Doctors not communicating with one another, etc. Use the services Mayo provides, from social work, to nurse navigator. Things here at home are rough but we know it will begin to improve. You're in my prayers and thoughts (on my prayer list so not to forget). Please update your post as you move through treatment.

Jump to this post

Thank you so much for reaching out and for your kind words—they truly mean a lot. It’s really reassuring to hear about your experience with Mayo and to know we’re in such good hands. My husband starts his treatments this week, and we’re really nervous about what the side effects may entail, but we’re trying to take it one step at a time.

I can also really relate to medical horror stories—I have lupus and another rare autoimmune disease, so I know firsthand how challenging it can be to get proper care and communication between doctors. Mayo has already been such a refreshing change, and I’m so grateful for that.

I truly appreciate the prayers and will do my best to keep updating as we move through treatment. Wishing you and your husband strength and healing as well.

REPLY
luvnsunshine | @luvnsunshine | Feb 22 5:53am

Hi, I wanted to share an update in hopes that it might help someone else navigating this same difficult path. My husband starts his cancer treatments this upcoming week—chemotherapy and 35 proton radiation sessions. It’s been a whirlwind preparing for everything, but we’re feeling as ready as we can be.

For our first visit, we ended up staying three nights, and as many of you said, the hotels were incredibly accommodating! We stayed at the Hyatt House, which was so close we even walked back a few times, though they also offer a free Mayo Clinic shuttle that runs about every hour (check the posted schedule if you stay there!).

The days leading up to the appointment were tough—the waiting was excruciating. The morning of, the anxiety was intense—nightmares of us missing the appointment. We couldn’t wait to get out of the house and start our drive!

Because we arrived a little too early, we found a charming little Dutch restaurant to ease some nerves and enjoyed brunch before heading to the hotel. The Hyatt House also let us check in early so we could park our car in the hotel’s parking garage and leave our luggage in our room (definitely worth calling ahead to ask if you need it). From there, we took the hotel’s shuttle to the Gonda Building.

Walking into Mayo was an experience in itself—it felt more like a high-end hotel than a clinic. My husband even commented on how impressive the space was. But despite the beautiful surroundings, the anxiety in the waiting room was overwhelming. We weren’t able to check in online for some reason, but thankfully, the kiosk process was easy.

I was so nervous I felt physically sick. But the moment the care team started talking, I felt a huge sense of relief. They naturally answered almost all of my questions without me even having to ask. It was clear they had everything mapped out for us.

Before we even left that day, we had all of my husband’s appointments for the week scheduled and a solid idea of what the next several days -to weeks would look like. Every staff member we encountered was incredibly kind and helpful, guiding us through each step and ensuring we never felt lost.

While this journey is daunting, we’re feeling more confident and comforted by the experience so far. Mayo truly is a special place, and we’re so grateful for the care we’re receiving.

I’ll continue to share updates in case it helps anyone else on this road. Sending strength to everyone going through this—you are not alone!

REPLY
1 reply
Mentor
Laurie, Volunteer Mentor | @roch | Feb 22 6:50am
In reply to @luvnsunshine "Hi, I wanted to share an update in hopes that it might help someone else navigating..." + (show)
@luvnsunshine

Hi, I wanted to share an update in hopes that it might help someone else navigating this same difficult path. My husband starts his cancer treatments this upcoming week—chemotherapy and 35 proton radiation sessions. It’s been a whirlwind preparing for everything, but we’re feeling as ready as we can be.

For our first visit, we ended up staying three nights, and as many of you said, the hotels were incredibly accommodating! We stayed at the Hyatt House, which was so close we even walked back a few times, though they also offer a free Mayo Clinic shuttle that runs about every hour (check the posted schedule if you stay there!).

The days leading up to the appointment were tough—the waiting was excruciating. The morning of, the anxiety was intense—nightmares of us missing the appointment. We couldn’t wait to get out of the house and start our drive!

Because we arrived a little too early, we found a charming little Dutch restaurant to ease some nerves and enjoyed brunch before heading to the hotel. The Hyatt House also let us check in early so we could park our car in the hotel’s parking garage and leave our luggage in our room (definitely worth calling ahead to ask if you need it). From there, we took the hotel’s shuttle to the Gonda Building.

Walking into Mayo was an experience in itself—it felt more like a high-end hotel than a clinic. My husband even commented on how impressive the space was. But despite the beautiful surroundings, the anxiety in the waiting room was overwhelming. We weren’t able to check in online for some reason, but thankfully, the kiosk process was easy.

I was so nervous I felt physically sick. But the moment the care team started talking, I felt a huge sense of relief. They naturally answered almost all of my questions without me even having to ask. It was clear they had everything mapped out for us.

Before we even left that day, we had all of my husband’s appointments for the week scheduled and a solid idea of what the next several days -to weeks would look like. Every staff member we encountered was incredibly kind and helpful, guiding us through each step and ensuring we never felt lost.

While this journey is daunting, we’re feeling more confident and comforted by the experience so far. Mayo truly is a special place, and we’re so grateful for the care we’re receiving.

I’ll continue to share updates in case it helps anyone else on this road. Sending strength to everyone going through this—you are not alone!

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@luvnsunshine
Thank you for sharing your experience. It is always nice to hear from new patients on their experience. At first was confused about Dutch restaurant, but then realized it must be Pannenkoeken. I have never eaten there, but plan on visiting next week when sister is in town.

Please continue to share and provide advice for new patients.

REPLY
1 reply
luvnsunshine | @luvnsunshine | Feb 22 7:08am
In reply to @roch "@luvnsunshine Thank you for sharing your experience. It is always nice to hear from new patients..." + (show)
@roch

@luvnsunshine
Thank you for sharing your experience. It is always nice to hear from new patients on their experience. At first was confused about Dutch restaurant, but then realized it must be Pannenkoeken. I have never eaten there, but plan on visiting next week when sister is in town.

Please continue to share and provide advice for new patients.

Jump to this post

I’m happy to share our experiences in hopes they might help others going through a similar journey to my husband and me. And yes, I’m relieved you figured it out! I couldn’t quite remember the name of the restaurant, but it was Pannenkoeken. It’s such a cute spot, and I think you’ll really enjoy it when you go with your sister.

I’ll try to continue to share updates and experiences along the way. Wishing you both a wonderful visit and meal at Pannenkoeken!

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