Visit to Mayo Clinic

I had blood work done on a Wednesday at the Mayo Clinic. One thing you need to remember is that some of the results may be dependent on the machines performing the analyses, so the results may not be directly comparable to those from your “home” clinic. CA 19-9 comes to mind. Mayo also has a way to set up so that you can access your results from your computer. I did not have to have a CT scan since I had had one a month before my visit. If you don’t have a recent one, they may schedule one for you there.

Thursday I came back. Check in was smooth. Stayed on schedule. After the required height and weight measurements (and birthday confirmation) waited maybe 15 minutes and met with nurse practitioner. She was great. Knowledgeable. (I was impressed that both she and Dr. Steven Alberts knew of our site and the discussion boards.) She opened with a leading question and I got on a roll. I love to tell stories and I had a captive audience. I had a question about an item from my CT scan report. She brought up the first and last scans and showed me what the item meant. NOTE: Even though they ask you to bring only the last three scans, I suggest you bring them all you have. Better to have too much info than say, “If only you had brought one more thing.” Since it all on DVDs, it’s no big deal.

She left and talked with Dr. Alberts for a few minutes. After he came in we chatted for a few minutes then got down to the reason for my visit. He agreed with the revised treatment plan of going back to what worked (carboplatin and gemcitabine) since I had tolerated it well and was a first line treatment. (My onc here had planned for me to go to FOLFOX6 which is a second line treatment. I thought she had given up too early and disagreed with that approach. She and I eventually agreed to go back to carbo/gem.) So, everyone was in agreement with my next series of chemo treatments. Dr. Alberts then brought up what possibilities existed after the carbo/gem had run its course. This is where his knowledge really came out. Things he had in mind were not even in my onc’s world. We discussed the option of clinical trials. We also discussed genome testing and how it might help (something my onc mentioned only after she had been treating me 14 months). He said that it was important that a certain test be performed which was not in the normal plan. We ended by agreeing that I would keep sending him updates, especially the results of the genome testing. When it looked like a treatment change might be required, he would review everything and discuss with me and my onc. Probably could be done over the phone.

Dr. Alberts is confident that there will be a major breakthrough in CCA treatment in a few years. Probably in using existing treatments from other cancers in treating CCA. That’s where the pharmas can get the biggest bang for their bucks. Follow the money.

Physical impressions:
Mayo Clinic is HUGE. The main campus takes up about six blocks. The second campus takes up a few more. And that is just downtown Rochester. It has an underground tram and above ground skyways connecting buildings. Over 34,000 people work there. The public rooms, like the entrance and waiting areas are beautiful, like a fine hotel. Marble and wood. Possibly leather chairs (definitely not fabric).

Things I’d do differently in travel and lodging if I have to go back.
1. Fly to Rochester instead of Minneapolis. Try to avoid a layover in Chicago.
2. Find motel with airport and Clinic shuttles to avoid paying for car rental (make sure there are restaurants within walking distance).
3. Get a reservation that allows changes without paying extra. I stayed an extra day in case they wanted more testing. But it would have been expensive to change flights after they were booked.
4. The Mayo Concierge service can help with all that – just call them.

Things Mayo could improve:
I completed some forms twice. One set said to send back in 7 days; other set said to bring with to consult.

Have patients go right to 10 South Gonda (oncology center), not to Admissions.

They take a picture of you to enter into your file for security. That is done right next to Admissions at Window 18. Stop there first if the line is short, otherwise go to 10 South Gonda first.

Final impressions:
Mayo Clinic is a top shelf institution. People are knowledgeable. They exude confidence. They are calm and reassuring to patients. Professional and kind. They know why you are here and act accordingly. Not syrupy sweet, but understanding. You get the feeling that you are in good hands.

Duke