Esophageal Cancer: How do I get started with Mayo?

As I recall after we had the diagnosis of esophageal cancer we looked up gastro oncology general number on the website. The staff was wonderful about getting us the oncology appointment and the thoracic surgeon appointments coordinated.

My husband has his schedule of appointments in Rochester. February 9 th can’t come soon enough!

Yeah that’s tough. Another reason we made Mayo work logistically. We ran into that with the first doctor we saw and we’re rudely just told “that’s not how it works” you can’t get your instructions from Mayo then just expect us to do it here. When I tried to explain I was looking for a local team that would partner with Mayo so we could weigh the option plans together I was again met with resistance and very much a “it’s our way or the highway” mentality. The nurse was outright rude about it and acted like we were the biggest inconvenience she had ever experienced. This was at the University of Nebraska Medical Center Buffet Cancer Center in Omaha NE by “Marie”, the head nurse assigned to Dr. Jean Grem. Warning for anyone reading this who happens to be in Omaha. I think if we would have stayed there for our cancer care my wife would either already be dead or not have a shot at living cancer free, ever. If your local provider is already giving you resistance and you haven’t even started care that should be a giant red flag as to how they would treat you if you were under their care. Avoid at all costs.

Or dear. I'm sorry to hear about that. When you have your video appointment with Mayo on Wednesday, you might ask them about working with your local oncologists. They may have colleagues in your area that they know and work well with.

This morning I thought it might be a good (proactive) idea to find a local oncologist who will coordinate with Mayo. What i found out was our local oncologists are seemingly very territorial and not interested or willing to this type of plan.

Thank you for the feedback and advice. Wednesday cannot come soon enough. It feels like we are losing valuable time.

Hey @jmp1514 Welcome to the club no one wanted to be invited to. The answer to your question really depends on where you are going to seek treatment. Whichever facility or institution that is going to do your treatment is going to insist on their own scans which is actually a good thing. In our case we had all the scans done locally in Nebraska and also had them all done again at Mayo to keep our options open. I will tell you this, Dr. Grotz and Dr. Blackmon with Mayo Clinic literally saved my wife’s life and I would do absolutely anything in the world for them. There’s a reason they are the top hospital in the country, the compassion and concern these doctors, PA’s, nurses (OMG especially the nurses, I would do anything for them. Just hearts of GOLD, all of them) all have is simply unmatched. I wish you success in this journey no one asked for, but will say have faith in God and trust in your providers at Mayo for the best possible outcome. Bless you.

Welcome, @jmp1514, I moved your message to this existing discussion:
- Esophageal Cancer: How do I get started with Mayo? https://connect.mayoclinic.org/discussion/get-started-with-mayo/

I did this so you can click the link and connect with fellow members like @dtaylor75 @sepdvm @pellaw @maryhelen @survivorsuz @puprluvr @lori57216 who have had care for esophageal cancer at Mayo Clinic and can help answer your questions about coordinating care with local doctors and experts at Mayo Clinic for esophageal cancer.

Regarding diagnostic testing, I might suggest asking during your video appointment. In general, Mayo Clinic can work with quality and recent imaging studies done elsewhere. However, if you haven't had the scans and tests done yet, they may advise to get them done at Mayo Clinic to ensure they get the imaging and quality they need.

You might appreciate the tips from members about video appointments and coordinating care locally in these discussions:
– Telemedicine: How to make the most of a virtual doctor visit https://connect.mayoclinic.org/discussion/covid-19-telemedicine-its-a-brave-new-world/
- How to treat at Mayo Clinic if you live a distance from Rochester https://connect.mayoclinic.org/discussion/how-to-treat-at-mayo-clinic-if-you-live-a-distance-from-rochester/

JMP: Have you started a list of questions to ask for your video appointment?

My husband had an egd with biopsies. Positive for invasive esophageal adenoma grade 2-3. We have a video appointment with Mayo in Rochester in a few days. Should we also engage local oncologist-we live in Florida? Should next steps (scans, etc) get done here or Mayo?

If you haven’t already done so , this might be a place to start.
Go to Mayo website:
Mayoclinic.org. There is a button for making appointment