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Might we have to Travel Twice to Mayo?
We are traveling to Mayo from Indiana. My wife needs surgery to remove a carcinoid tumor from her right lung. We have an appointment for a face-to-face on Monday, November 20th, and they said to plan a few days in case they need tests, etc. So, does that mean that we will have to take another trip to Minnesota for the surgery? We were hoping we could do it in one trip. We've sent all the test results, etc. Does anyone have an experience where they have just kept you after the face-to-face to get the surgery done? Or do they always have to schedule farther out? My niece had the same condition about 5 years ago, and they had her come in within a couple of days of her first contact with them and did the surgery shortly after. However, we waited at least a month to be scheduled after we contacted them and it sounds like they won't be scheduling the surgery until after our first appointment, which makes sense, but will it be another six weeks? It's hard to understand how my niece was brought in immediately and the surgery was scheduled right away, but our first appointment took so long and we have no idea when the surgery might be.
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Hi @matthew23, welcome. I'm glad that your wife is seeing carcinoid tumor specialists at Mayo Clinic. She (and you) will be in good hands.
I have added your questions to the Neuroendocrine Cancer support group as well. See here:
- Neuroendocrine Tumors (NETs) https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/
Fellow NETs/carcinoid members like @shari0912 @tomewilson @firepowr @jstubbs0218 @northwoodsbarb @marilyn2525 can share how the appointment scheduling, appointments and treatment visits were scheduled for them.
You might also appreciate the information in this related discussion:
- Need Advice: Might I need to extend my stay? https://connect.mayoclinic.org/discussion/needing-advice/
I'm also tagging @IndianaScott to bring him into this discussion. As his username implies, he shares the same home state and has made the trip to Mayo Clinic Rochester often. He may have some travel pit stops and tips for you as well.
Matthew, I might also suggest that you contact Mayo Clinic and let them know of your wish to include treatment within the same visit if possible. The more the schedulers know about your preferences, the higher likelihood that they will do their best to accommodate your needs.
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7 ReactionsThanks. Colleen. I talked with one of the schedulers today, and he said that the decision would be made at the time (when we are there) and it’s a case by case decision, so he couldn’t give me any kind of timeline. We’ll just plan on a second trip because it’s very unlikely that they would schedule her surgery for that week (Thanksgiving). We’re grateful that we are being seen.
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2 ReactionsI think you would be making another trip. I’d call and inquire. Your surgeron team should be able to help with scheduling and travel. Who is doing her surgery? I had a lung tumor removed in April full thoracotomy. Also full helleful group for lung nets on fb. Loveable lungnoida
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1 Reaction@jstubbs0218, so kind of you to share your cell number. However, for your safety and privacy, we strongly advise not posting personal information such as phone numbers, street addresses, email addresses, or any other private information on a public forum. Instead I recommend using the secure private messaging.
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2 ReactionsOh and also could you see what can be done virtually and often time labs ect can be done at local clinic and sent to Mayo.
Surgery date will depend on multiple variables. The surgeon's schedule and when they have an opening. Also if surgeon is out of office for vacations or trips. I doubt you would have to wait another 6 weeks, once you see surgeon and start process, things move fast.
Laurie
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1 ReactionNormally you would not have to wait. That is the beauty of Mayo. However, it is difficult to know what the schedule is in any given service right now, including surgery.
When we were there in Sept-October, they were backed up. There had been a heavy influx of seriously ill long Covid young patients plus patients that put off seeing doctors for serious conditions during Covid.
I also suspect they may be short staffed. Both my long time (20 years) physician (hematologist) and my husband's physician (Cardiac) retired; the latter after 40 years at Mayo. I don't know (in general) but a friend, who goes there and is a physician herself, made the same observation. We may both be wrong.
Sounds like you have a serious condition. I would bet you get a priority status.
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1 ReactionWelcome @matthew23
I will also be going to Rochester 11/20/22 and at Mayo Monday 11/21/22 & 11/22/22 for a kidney biopsy and other two year post transplant testing. I tried to get a pulmonary consult, but could only get a couple minor pulmonary tests added on even considering an additional day 11/23/22. I share this as it is less typical of the way Mayo used to be. I have to wait for a consult with pulmonology until February and that was from a cancellation. It used to be they offered to add on other things, but they must be under staffed.
That said, I would think your wife would be triaged for the urgency of the surgery.
One of my sons fought an extremely rare cancer as a child, and I was always told that young people’s cancers typically are faster growing and that may have played a role in your niece’s surgery getting done quicker.
I hope your wife’s surgery will be scheduled as quickly as possible as waiting can be so very stressful!
Know that I will be thinking of you both and praying all will be well.
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2 ReactionsThank you.
I live in Kissimmee I had made multiple trips and tomorrow need to stay at Jacksonville as usual. I’m getting imaging. I try to enjoy the view of the beach 🏝️ if we have time to stop by to relax after a very busy day at the clinic 😌