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.

cmickelson15 | @cmickelson15 | Feb 6 9:01am

People covered things well here so here are a few additions:
- Because healthcare was the only necessary item in my schedule, I appreciated that they just scheduled everything proactively and I just had to show up.
- Get comfortable with the app. It manages your schedule, notifies you when prescriptions are ready, gives you access to quality post appointment notes, allows you to submit questions, etc.
- If you can spend the money, the Rejuvenate Spa at Mayo Clinic can provide a nice break from the stress. If you get a massage or other treatment, you have full day access to the steam room and salt water jacuzzi. My family bought my wife and me massages and it was therapeutic for sure.
- Mayo has a lot of resources you’ve likely seen in their website, including the Concierge service listed below. They are truly responsive and helpful.

Mayo does a great job, IMO, of managing the experience. The normal stressors of scheduling, getting referrals, waiting for returned calls, etc were paused for us while there in Rochester.

REPLY
1 reply
marksalzwedel | @marksalzwedel | Feb 6 9:08am
In reply to @luvnsunshine "Hi Mark, Thank you so much for sharing your experience and the helpful tips! This is..." + (show)
@luvnsunshine

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.

Jump to this post

Blessings to you and your husband. You'll meet a lot of wonderful people in Rochester who will help you through this difficult time. Sending you prayers!

REPLY
1 reply
luvnsunshine | @luvnsunshine | Feb 8 6:28pm
In reply to @roblem "I had my care at Froedtert & the Medical College of Wisconsin Cancer Clinic in WI..." + (show)
@roblem

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.

Jump to this post

Thank you so much for your thoughtful message and wonderful ideas! I really appreciate you sharing your experiences and these helpful tips. It means a lot.

Thanks for the reminder about recording appointments – it's something I'm going to ask his team about. A little nervous asking about it but it seems so useful especially for moments when they surprise us with something that feels scary. The medication tracking sheet is great too, thanks so much for sharing!

Your advice about the speech/swallowing therapist was spot on; my husband has a consult set up.

Thanks again for your support!

REPLY
luvnsunshine | @luvnsunshine | Feb 8 6:34pm
In reply to @cmickelson15 "People covered things well here so here are a few additions: - Because healthcare was the..." + (show)
@cmickelson15

People covered things well here so here are a few additions:
- Because healthcare was the only necessary item in my schedule, I appreciated that they just scheduled everything proactively and I just had to show up.
- Get comfortable with the app. It manages your schedule, notifies you when prescriptions are ready, gives you access to quality post appointment notes, allows you to submit questions, etc.
- If you can spend the money, the Rejuvenate Spa at Mayo Clinic can provide a nice break from the stress. If you get a massage or other treatment, you have full day access to the steam room and salt water jacuzzi. My family bought my wife and me massages and it was therapeutic for sure.
- Mayo has a lot of resources you’ve likely seen in their website, including the Concierge service listed below. They are truly responsive and helpful.

Mayo does a great job, IMO, of managing the experience. The normal stressors of scheduling, getting referrals, waiting for returned calls, etc were paused for us while there in Rochester.

Jump to this post

Wow, thanks for these fantastic additions! They're so helpful.

The proactive scheduling sounds like a *huge* relief – one less thing to worry about. I'm definitely going to get comfortable with the app; all those features, especially the post-appointment notes and being able to submit questions, are amazing! The Rejuvenate Spa tip is brilliant; that steam room and jacuzzi sound absolutely heavenly – I'll definitely check it out. And it's so good to hear firsthand how helpful the Concierge service is. It's really reassuring to know they handle so much of the administrative stuff. Thanks again for sharing all this – it's making me feel so much more prepared and at ease!

REPLY
luvnsunshine | @luvnsunshine | Feb 8 6:36pm
In reply to @marksalzwedel "Blessings to you and your husband. You'll meet a lot of wonderful people in Rochester who..." + (show)
@marksalzwedel

Blessings to you and your husband. You'll meet a lot of wonderful people in Rochester who will help you through this difficult time. Sending you prayers!

Jump to this post

Thank you so much for your kind blessings and prayers. That's so comforting to hear, and we really appreciate your support.

REPLY
courageandstrength | @courageandstrength | Feb 10 6:13pm

Hi, in the same boat as you—
husband also diagnosed with SCC tonsil primary with met to lymph nodes. We also had a second opinion at the Mayo Clinic last week. My husband starts chemo and radiation in two weeks. We opted to get local care verses traveling to the Mayo Clinic for treatment, mostly because we weren’t ready to be in an early stage dart 2.0 trial after doing extensive research in tandem with the extent of his lymph node involvement. Sending courage and hope your way. It’s really scary despite the excellent prognosis. If you’d like to connect, please reach out. I could really use a friend who is going through the same.

REPLY
2 replies
Mentor
Laurie, Volunteer Mentor | @roch | Feb 11 7:52am
In reply to @roblem "I had my care at Froedtert & the Medical College of Wisconsin Cancer Clinic in WI..." + (show)
@roblem

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.

Jump to this post

@roblem
Thanks for sharing the medication log sheet. It would be helpful, especially when on meds that need to be taken multi times during day. I am thinking of times when had specific drugs to take at certain times pre and post surgery. Would also be helpful if having caretaker administer drugs. In column with drug info, it might be helpful to include why your taking that med or any special instructions or restrictions.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 16 9:44am
In reply to @courageandstrength "Hi, in the same boat as you— husband also diagnosed with SCC tonsil primary with met..." + (show)
@courageandstrength

Hi, in the same boat as you—
husband also diagnosed with SCC tonsil primary with met to lymph nodes. We also had a second opinion at the Mayo Clinic last week. My husband starts chemo and radiation in two weeks. We opted to get local care verses traveling to the Mayo Clinic for treatment, mostly because we weren’t ready to be in an early stage dart 2.0 trial after doing extensive research in tandem with the extent of his lymph node involvement. Sending courage and hope your way. It’s really scary despite the excellent prognosis. If you’d like to connect, please reach out. I could really use a friend who is going through the same.

Jump to this post

Hi @courageandstrength (I love your username). It does sound like you and your husband are in a similar situation as @luvinsunshine (another good username).

After getting an assessment and treatment plan from Mayo experts, many patients and families choose to receive treatment closer to home.

Courageanstrength, how many radiation treatments will he have? How are YOU doing? There’s a lot to do as a caregiver and rarely do people check in on how you are doing.

REPLY
michgirv | @michgirv | Feb 16 10:06am

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.

REPLY
1 reply
luvnsunshine | @luvnsunshine | Feb 22 5:12am
In reply to @courageandstrength "Hi, in the same boat as you— husband also diagnosed with SCC tonsil primary with met..." + (show)
@courageandstrength

Hi, in the same boat as you—
husband also diagnosed with SCC tonsil primary with met to lymph nodes. We also had a second opinion at the Mayo Clinic last week. My husband starts chemo and radiation in two weeks. We opted to get local care verses traveling to the Mayo Clinic for treatment, mostly because we weren’t ready to be in an early stage dart 2.0 trial after doing extensive research in tandem with the extent of his lymph node involvement. Sending courage and hope your way. It’s really scary despite the excellent prognosis. If you’d like to connect, please reach out. I could really use a friend who is going through the same.

Jump to this post

Hi, I’m so sorry I didn’t see your message earlier. Thank you for reaching out and sharing your husband’s journey—it really means a lot. I completely understand how overwhelming this all is, even with a good prognosis. My husband starts both chemo and radiation this as well so we’re right in the thick of it too. I would love to connect and support each other through this. Sending strength to you and your husband as you start treatment. Please feel free to reach out anytime.

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