Asking for pre-op and first trip travel questions/tips.

@nmsal, welcome. There are several esophageal cancer support group members who have been to Mayo Clinic in Rochester, like @dtaylor75 @sepdvm @pellaw @maryhelen @survivorsuz @puprluvr @lori57216 @nbern @scarlettanager who have had care for esophageal cancer at Mayo Clinic and can help answer your questions as you prepare to go to Mayo Clinic.

You might also be interested in this related discussion:
– Esophageal Cancer: How do I get started with Mayo? https://connect.mayoclinic.org/discussion/get-started-with-mayo/

Also, check out the general support group with many tips about Mayo Clinic here:
- Visiting Mayo Clinic Support Group https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/

Will you be traveling with your brother?

Yes I will traveling with my brother. Thank you for the links, I will check them out.

Hello, nmsal, So sorry to hear about your brother's cancer. I do not have esophageal cancer, but have head and neck cancer and 11 years of experience with oncology and ENT surgery at Mayo Rochester. I sincerely feel that you are seeking out the best possible place for treatment. Like a 5 star restaurant compared to McD's, as a friend once said.
I would jot down your questions and ask exactly what you want to know, including the actual procedure. I would want to know about length of stay in hospital postop and followup visits for rechecks. It is very important to ask about potential complications and how frequently they happen, having learned that from experience. IF he is taking any supplements, make sure those are included in his med list. A mayo pharmacist can assess the list and make recommendations if needed. I have never felt rushed during appointments, with time for questions always available.
There is a Cancer library and education center in the Gonda building that is very complete. You can also request a patient navigator to assist you with compiling information.
Staying at Kahler Grand you are right next door to the Methodist Hospital and Gonda building. They have a convenient little restaurant right off the lobby as well as a couple others on the same block.... Italian and Irish both are good. On the nearby Peace Plaza is Chester's which has great food. There are fast food and healthy choices in the subway under the hotel/Gonda area which you can access from your hotel easily. We have stayed there several times and while room amenities are not always great, they have always remedied any issues at the front desk.
There are information desks and everyone is so helpful for navigating the Gonda building for appointments that you will have no problems there. Good luck to you and enjoy Rochester.

Sue has some good tips for you above. My husband had stage 3 esophageal cancer and went through the chemo and proton radiation with an esophagjectomy (sp) in March of last year. I took notes every time a Dr came in so I could convey the appropriate information to family and friends. It was also helpful to write down questions as they come up so you don't forget.

The only thing I wanted to mention that the patient navigator at Mayo helped us find places to stay and I preferred Centerstone Plaza on Soldiers Field. Their rooms are not new, but clean and the staff is so helpful. As a spouse the best thing for me was they have a bus service that runs continuously from 5:00 a.m. to 10:00 p.m. and they have a restaurant on site that is very good. it is a short trip to any of the Mayo campuses and they will drop you right at the door of any building you request. The bus drivers are top notch and so caring. Since I was there on my own, it really made me feel safe. I would also ask if the Mayo Patient Navigator offers any discounted rates for your stay. There is also the Hope Lodge specifically for cancer patients as well as other places to stay. Also, if your brother is having surgery at St Mary's, there is a cafeteria there so you can take a break, they have a library, and their are good restaurants right across the street available for lunch as well.

Good luck to you as you begin this journey. You will be so thankful for the staff at Mayo (everywhere). they are definitely top notch and very caring. Rochester is a nice city too.

Esophogeal cancer survivor here. We stayed at the Kahler Motel the first time out of the convenience of the location. We stayed at the Centerstone Plaza every time after that also!!!!
I was in the hospital after surgery for 2 weeks. Was only supposed to be a week but after they removed the drainage tube I contracted an infection. This was in
April 2020. So far so good post recovery. Your brother is in the very best place possible!!!!

When my husband had surgery I stayed at the Aspen Hotel right across the street from St Mary’s side entrance. They gave a hospital stay discount, breakfast bar, fresh cookies, and free parking. Shuttle to Mayo on sight.

My husband has esophagus cancer and they are evaluating treatment. Can someone that has had an esophagectomy tell me about there journey?

I had an esophagectomy on April 17 with no prior radiation or chemo. Both my oncologist and thoracic surgeon agreed surgery was the best option given the extent of the cancer in my throat. It is important to listen the best you can when discussing the operation with your doctors as this is, no sugar coating, a brutal and dangerous surgery. (My wife and I did the consultations together but natural panic made it hard to hear everything!) I was in ICU for five days after the operation and Critical Care for six days, general care for one before being released home. No fluids or food for the majority of the time in the hospital and at least a few weeks on practically liquid food at home. I weighed 240 pounds when I developed the swallowing issues, probably 219 when I went in for surgery and now my weight is holding around 183. Recovery from the surgery was projected at six to nine months. It is critical in my experience to start walking as soon as the hospital staff suggests. With a large incision in your back and stomach and tubes and lines everywhere you absolutely won't feel like it but every step makes a huge difference in getting your strength back. I had an excellent and extremely cautious surgeon who followed up with me EVERY single day in the hospital and by phone after I was released which I mention because that seems like unusually compassionate dedication. We had prepped the house with an adjustable bed, assist bars around the downstairs toilet and a walker. If you do the steps with the PT coaches in the hospital you really only need the adjustable bed. (Post surgery you will be sleeping at a 30-45 degree angle, probably for life.) The first few days at home I slept most of the time in the recliner. By day 3 at home I was able to shower with minimal assistance. Within a week I was walking back and forth in the driveway and within two weeks around the neighborhood. The surgeon kept me on a soft food diet for about two weeks at home and after that I was able to eat and SWALLOW(!) just about anything. The direction is small meals several times a day and that is not a hardship. You will get full fast and living life like a hobbit is actually kind of pleasant. After 4 months my life has returned to about 85% of normal. The biggest challenge I'm currently facing is "dumping syndrome" where I process food to fast if I eat too much and have what I think is an insulin imbalance that leads to dizziness and extreme, extreme sweating. It doesn't happen every day but it is a bit scary. I follow up with the thoracic surgeon in November for another EGD to see how the throat has healed and evaluate the hopefully complete removal of the cancer. Again, two takeaways from my experience is to be clear on the risk of this surgery because my surgeon was underselling when he said it was brutal and take full advantage of the physical therapy team in the hospital. Move when they say move and if they want you to take ten steps, take twenty. Good luck and there IS quality life ahead.

Your courage is amazing

I second the Gardenlady. Your attitude is everything and I commend you. I had surgery 3 weeks ago and everything is going great. 2 miles a day on the treadmill is key, stay active. Fortunately my appetite is strong so much so my wife is threatening to put me on a diet. Keep up the good work.