Anxious about my first appointment

Posted by bode1 @bode1, Oct 6, 2021

Some basic background info:

25F. Last year I noticed a hard mass below my ear and in the following months have had several more lymph nodes pop up all over my neck. I could make this story long, but basically after a CT scan and an US, it’s pretty much confirmed that I have a small parotid nodule that ENT thinks is likely a tumor. In addition to that, I have several bilateral lymph nodes measuring around 1cm and one large one (the initial hard mass noticed) measuring 2.8 x 1.7 x 0.7 that shows some concerning features like round shape, cortical thickening, and loss of fatty hilum.

I would continue seeking care locally, but I have been having such a hard time trying to coordinate between my Primary care doc and ENT and scheduling in my city is a nightmare. So I called Mayo – Phoenix location – and surprisingly I got in right away and my appointment is in 10 days time.

Here are some questions and fears that I have:

– I only requested 1 day off because on my patient portal it just lists one appointment – an evaluation with an ENT doctor. It is very likely that I’ll be there longer than one day? My patient info sheet on the portal doesn't mention anything about staying longer than 1 day. I’m not super complex, but I definitely would like something definitive by the end of my visit. I’m so afraid that I’m going to go all the way to Mayo (dragging my mom with me too) only to be told to come back later or get everything done locally instead of at Mayo. It is unreasonable for me to expect them to do scans and a biopsy during my visit? My CT scan was done several months ago and my US wasn’t very comprehensive – she skipped over the entire lower half of my neck where I can feel more lymph nodes so I also wouldn’t mind getting that repeated.
– While my main reason listed for the appointment is my parotid tumor, I also have some other concerns like an odd rash that I got last year, some random chest pains, and other symptoms that I fear might be related. I know ENT’s don’t do much for the rest of the body, but should I still mention it? Surgery is the treatment of choice for parotid tumors but I don’t want that to be the sole focus of my visit – I’d also like my lymph nodes looked into.

Basically, I’m worried about this visit not ending in anything concrete with me just being dismissed after a brief evaluation. Can anyone advise on if it’s normal to only have one appointment scheduled? I was reading posts on this thread and a ton of people mention that their patient portal has multiple appointments and scans already scheduled and it’s making me really anxious.

Interested in more discussions like this? Go to the Visiting Mayo Clinic group.

@bode1 Congratulations on becoming a Mayo patient! It will be completely different that what you are used to. When you have an evaluation, if you need to be seen in a different department or have further testing, they will schedule an appointment at Mayo often the same day or next day. They don't know until they see you, what else you may need, so don't let that worry you. You may want to add more time to your time off request. I would suggest calling the office of the doctor who you will be seeing to ask if they can give you some guidance on how much time you may need to have available. Another thing you can do is to try to get your testing appointments done earlier by checking in and waiting as a "stand by" patient, because scheduling can change as other patients also get done early releasing time slots they were holding. They do things as efficiently as they can, but there can be a wait for something like an MRI because those usually can't be done early.

I am a Mayo patient and came there first needing spine surgery. They usually advise giving yourself a week. I had all my testing appointments on day 1, and on day 2, I met the surgeon and he had all the results available. They scheduled more testing appointments ordered by the neurologist who evaluated me on day 1 because I also have thoracic outlet syndrome, and during the meeting with the spine surgeon, his phone rang and it was the doctor I saw the hour before calling with results! That is how efficient Mayo is. I had to wait a couple days for an MRI, and there were only 3 days of appointments to get everything done. If you look at the patient guide in your patient portal, it suggests you may want to schedule other routine tests while at Mayo and gives a number to call, so if you have other issues that you would like an opinion about, bring it up. Usually the first doctor you see is the one who refers you to other departments. It is very efficient and they want it to be convenient after you have spent money to travel and for hotels, etc. If you need help finding a hotel, Mayo has a Concierge service you can call for free assistance. Many hotels have kitchens (at least in Rochester) and near a Mayo campus, they have special rates for Mayo patients.

Traveling to a new place for medical care can be stressful. You might like to try Mayo Clinic Concierge Services. They can make preparing for your visit easier by providing you with information to navigate Mayo Clinic, access to community resources and guide you with your unique travel needs.

Now with the Live Chat service, concierge services provide preliminary trip planning for all 3 Mayo Clinic campuses in AZ, FL and MN

Five Ways to Contact Mayo Concierge Services

Phone: 507-538-8438
Live Chat: https://www.mayoclinic.org/patient-visitor-guide
Email: concierge@mayo.edu
Web form: https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services

I suggest write down a list of questions you want to ask so you will remember. Did they ask you to bring in test results and imaging that you already have? They may want to see it, but I would expect them to re-test and confirm a prior diagnosis.

Does this put your mind at ease? I was very impressed with my experiences as a Mayo patient, and last year when I broke my ankle badly, all I had to do was contact my spine surgeon and ask for a recommendation for an orthopedic trauma surgeon and he took care of that and I knew I had a doctor I could trust because I completely trust my spine surgeons' opinions. That made my choice very easy.

Is there anything else I may answer for you?

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When we first went to Mayo we just had one appt. listed, but when we got there, they gave us an itinerary for three days of testing and checking. Then we had an appt. with the doctor that was going to help us decide on a plan of action. We felt like they were very thorough and addressed all things that were or could be related to his cancer and more. The best advice I can give is maybe give your place of employment a heads up that you may need some extra time. If you can be flexible with Mayo, they will just take amazing care of you, and help you to build a treatment plan that works for you.

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Like others, I suggest plan on more then one day. Might be better to tell work you will be gone for a week, and if return earlier then can change your schedule. Depending on day of week of appointment, may have to stay over weekend. Mayo normally does not schedule appointments over weekend. You did not mention how far your traveling to Phoenix.

Did you arrange to have your medical records sent to Mayo?

Prior to your appointment you will probably receive forms to fill out on your portal. I advise to fill out ahead of time so do not have to do when check in.

As someone suggested bring list of questions, bring a notebook so can take notes. Make sure bring list of your medications / dosages, etc… I also suggest you bring a written list of all your previous appointment / providers, tests, where test were done, etc…. More organized you are, more efficient the appointment will be.

You are already familiar with portal, make sure downloaded app to phone if have not done so already. Then you can see results and appointments on phone while on visit.

After your appointment, the provider's notes will be available on portal. Imaging tests results are not available immediately on portal. The radiologist read but results are not posted on portal for around 36 hours.

Good luck
Laurie M

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I went for a week of evaluation testing mid June. Of course after my eval with my neuros, my appts. for the week we’re adjusted. Some added and some deleted. Did get my diagnosis (optic nerve sheath meningioma) and recommendations for next steps. (Proton radiation, 28x total over 6 weeks) Went for three days in July to see radiation oncologist to get headgear made, another MRI and CT for planning of treatment. Then set up time starting in Aug-Oct (6 weeks) for treatment. Traveled 🧳 Michigan to Minnesota. Just finished! They are very well organized and will coordinate appts for you. I think all unrelated issues probably shouldn’t be for the ENT, but they might possibly set you up with another dr for those.

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I have another comment about your first appointment.

Seeing you have some additionally symptoms that may or may not be related to your parotid tumor I thought I would suggest a tool to plan your visit.
https://patientrevolution.org/visit-tools
This is from a site called "The Patient Revolution" and it is a tool to plan your conversation with clinician. The reason I suggest it is because there is a question in tool called "It may help you to know…". That is where you could list your other symptoms.

I have used this tool when I meet a new specialist to organize my conversation prior to appointment and to make sure the clinician knows what my concerns are.

The Patient Revolution is a 501(c)3 non-profit organization.

Laurie

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I just got back from 3 days Mayo Clinic Jacksonville. I’d suggest to first have a televisit like I did with your Dr.
Then let him set up exact tests you’ll need . They will schedule the tests in the days back to back . They are very organized at Mayo . You def need to set up a lot through portal and you’ll see all your results there and can email your Dr. too .
Unfortunately I went through 3 tests I’d had years ago and one I just had a year ago .
Same results.
So I learned nothing new but I had to try .
My last resort. ;(
Best of luck 🤞, Rosemary

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@bode1 … Medical records are a critical consideration.. Mayo uses "Epic" medical Records system .. the same system that hundreds of leading medical facilities use… Are your tests credible, were they transmitted or given permission to be accessed by Mayo.. What new tests will Mayo do.. I only have experience with Mayo MN, where they had me do a few tests in the morning.. and after lunch they had a firm diagnosis.. The staff is very candid… and will respond to any questions.. Ask the ENT Staff… Tell them of your concern… Have them clear the way for any additional consultations needed. Ken

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Thank you for all the advice! I was able to have one record faxed over but all the rest will be hard copies that I will bring with me. I hope that's fine, but at least they have one record to look over before my arrival.

Making a list of questions is a good idea. I definitely want to push for a biopsy of my left enlarged lymph node. At this point I'm wondering if it's possible that that US was wrong and it actually is a parotid tumor instead of a node since it's rock hard and not growing at all.

I also had the annoying thing where all this week I kept thinking that I should cancel my appointment because my issues really aren't that big, my parotid nodule is super tiny (6mm x 3mm x4mm) and likely isn't even big enough to biopsy, and my nodes are barely even visible in the right lighting. Whereas I hear so many reports on here of people with serious issues going there, and online when I search swollen lymph nodes people have pictures of golf-ball sized swelling while mine is so tiny. I always do this though – it's like the reverse form of hypochondria.

Still worried they're just going to tell me what I already know without doing more testing, but I guess I only have 8 more days to wait until I actually find out what the plan is. I wish I would have done a Telehealth visit first but the option wasn't given to me and even if I did, I wasn't really able to fax most of my medical history over anyways. Plus, I wanted him to be able to feel my lymph node and tumor just in case that gave the doctor more insight.

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@bode1

Thank you for all the advice! I was able to have one record faxed over but all the rest will be hard copies that I will bring with me. I hope that's fine, but at least they have one record to look over before my arrival.

Making a list of questions is a good idea. I definitely want to push for a biopsy of my left enlarged lymph node. At this point I'm wondering if it's possible that that US was wrong and it actually is a parotid tumor instead of a node since it's rock hard and not growing at all.

I also had the annoying thing where all this week I kept thinking that I should cancel my appointment because my issues really aren't that big, my parotid nodule is super tiny (6mm x 3mm x4mm) and likely isn't even big enough to biopsy, and my nodes are barely even visible in the right lighting. Whereas I hear so many reports on here of people with serious issues going there, and online when I search swollen lymph nodes people have pictures of golf-ball sized swelling while mine is so tiny. I always do this though – it's like the reverse form of hypochondria.

Still worried they're just going to tell me what I already know without doing more testing, but I guess I only have 8 more days to wait until I actually find out what the plan is. I wish I would have done a Telehealth visit first but the option wasn't given to me and even if I did, I wasn't really able to fax most of my medical history over anyways. Plus, I wanted him to be able to feel my lymph node and tumor just in case that gave the doctor more insight.

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Along with all the other marvelous advice you’ve gotten from fellow members and mentors, my advice is to keep that appointment, if for no other reason than peace of mind.

The very fact that you were fearful enough to seek a second opinion and to reach out to Mayo Clinic in the first place, says your gut feels something isn’t right. You’re not denying anyone else the opportunity for an appointment by taking the one offered to you…it was, after all, offered to you! Remember that. You’re equally important, not a, what did you call it? A reverse form of a hypochondriac. Giggle. If there is something it’s much better to catch it early than to wait until things get out of hand.

By keeping that appointment you’re getting an opinion at one of the top clinics in the world. If there is a diagnosis, your doctor will form a treatment plan which can often be completed with your local provider.

So stop second guessing this appointment. Go, be Mayo-naised. ☺️

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@bode1

Thank you for all the advice! I was able to have one record faxed over but all the rest will be hard copies that I will bring with me. I hope that's fine, but at least they have one record to look over before my arrival.

Making a list of questions is a good idea. I definitely want to push for a biopsy of my left enlarged lymph node. At this point I'm wondering if it's possible that that US was wrong and it actually is a parotid tumor instead of a node since it's rock hard and not growing at all.

I also had the annoying thing where all this week I kept thinking that I should cancel my appointment because my issues really aren't that big, my parotid nodule is super tiny (6mm x 3mm x4mm) and likely isn't even big enough to biopsy, and my nodes are barely even visible in the right lighting. Whereas I hear so many reports on here of people with serious issues going there, and online when I search swollen lymph nodes people have pictures of golf-ball sized swelling while mine is so tiny. I always do this though – it's like the reverse form of hypochondria.

Still worried they're just going to tell me what I already know without doing more testing, but I guess I only have 8 more days to wait until I actually find out what the plan is. I wish I would have done a Telehealth visit first but the option wasn't given to me and even if I did, I wasn't really able to fax most of my medical history over anyways. Plus, I wanted him to be able to feel my lymph node and tumor just in case that gave the doctor more insight.

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Hi Bode1, how are you doing? What did you learn at your telehealth visit? Next steps?

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@colleenyoung

Hi Bode1, how are you doing? What did you learn at your telehealth visit? Next steps?

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It was pretty successful! It turns out, I actually don't have a parotid tumor at all but unfortunately, the doctor there was concerned about my swollen lymph nodes and started running some tests for lymphoma. Overall, I was really impressed with how efficient they are. I got into my appointment right on time, the campus is absolutely beautiful, and they are really well run. I wasn't able to get all my stuff done in the same appointment – just an Initial evaluation and a CT scan. Then I was sent home for a few days and I just drove back yesterday to get a needle biopsy done which I did this morning. back home again and I will return in 2 weeks to get a surgical biopsy if the needle biopsy turns out to be inconclusive. I do wish I have been able to get everything done closer together but luckily I only live 4.5 hours away.

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@bode1

It was pretty successful! It turns out, I actually don't have a parotid tumor at all but unfortunately, the doctor there was concerned about my swollen lymph nodes and started running some tests for lymphoma. Overall, I was really impressed with how efficient they are. I got into my appointment right on time, the campus is absolutely beautiful, and they are really well run. I wasn't able to get all my stuff done in the same appointment – just an Initial evaluation and a CT scan. Then I was sent home for a few days and I just drove back yesterday to get a needle biopsy done which I did this morning. back home again and I will return in 2 weeks to get a surgical biopsy if the needle biopsy turns out to be inconclusive. I do wish I have been able to get everything done closer together but luckily I only live 4.5 hours away.

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@bode1 Having had your first appointment, I hope you are able to rest easily, and know you are in great hands. Yes, a bit disappointing that not everything happened closer together, but you sound more relaxed! I hope the needle biopsy is enough for you, in figuring out what is going on.
Ginger

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