Seeking opinion about where to get a second opinion.

Posted by pefishback @pefishback, Oct 20, 2025

I’m currently in treatment for AML at the University of Michigan Health-West , which is located in Grand Rapids, MI and connected to the University of Michigan system. I’m considering seeking a second opinion outside the system, most likely at Mayo or MD Anderson.

I’m not sure if my request is appropriate, but I’d like to hear from people who visited one or both of these for a second opinion. What’s important to me is not only expertise, but being given ample time to have my questions answered, particularly since I’d be traveling a great distance.

If you’ve had a particularly bad experience or a particularly good one at either location, I hope you will feel comfortable sharing it with me via private messaging.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Profile picture for Lori, Volunteer Mentor @loribmt

@pefishback I’m so happy to hear you’ll be visiting my home away from home at Mayo-Rochester. I was there last month for my annual post BMT follow-up and it’s always amazing walking through the Gonda/Mayo buildings. There’s an underlying air of confidence and calmness among the hustle and bustle of patients, clinicians, volunteers walking right along with you.

If you haven’t already, now that your appt dates are in the book, it’s important to set up your patient portal. That will be your lifeline to appointments, test results, notes from your doctor or NPs. Things can happen quickly at Mayo. So whatever is on your schedule now, may be quickly amended to run more tests, etc.. so it’s good to have that lifeline open.

Here’s a link to hotels that are connected to the campus
~Which hotels at Mayo in Rochester are connected to skywalk/subway?
https://connect.mayoclinic.org/discussion/hotels/
Another helpful guide: https://www.mayoclinic.org/patient-visitor-guide/minnesota

Keeping in mind about the enormous amount of construction surrounding the campus. There’s really no white knuckle driving in Rochester. But right now it can be tricky to navigate with so many roads closed. So make sure you look at the gps on your phone to give updates on traffic patterns and closures. It’s doable! But can be frustrating at times.
That’s why I strongly encourage you to get a hotel linked to a walkway so that you can park your car once and not have to drive to the clinic and find parking quickly.
Personally, my husband and I stay at the Marriott Residence Inn on Center Street. (Full sized kitchen with fridge, dishwasher, range). Indoor parking or right across the street is a Mayo Ramp that is open to patients. It’s really inexpensive compared to the hotel parking. The ramp is Maximum of $12 daily.
If you have any questions, don’t hesitate to ask. Are you flying or driving?

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@loribmt — that’s so helpful. We’re taking a leisurely drive from MI.

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I went to Mayo Clinic from California
Beautiful campus everyone very helpful even travel assistance and a concierge
Insurance covered Dr visit and Dr was very helpful and knowledgeable
Lab and bone marrow procedure went very smoothly
Whole place is efficient and professional
Lobby beautiful

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My platelets were 1.4 million in June 2025. My new oncologist at Virginia Cancer Institute performed a bone marrow biopsy & diagnosed Prefibrotic Myleofibrosis with JAK2, ASXL1, SRS2 & TET2 mutations. I started on 2,000mg daily of Hydroxy and she referred me to University of Virginia Cancer Center for a second opinion. They concurred with the diagnosis. Couple months later I'm on 1,000mg weekdays & 500 on weekends with platelets at 407,000. My doctor encouraged the 2nd opinion, partly because the disease is rare (1 in 100,000) & difficult to differentiate from a couple others. I'm 78 years old and am 3 years past the limit for a stem cell transplant. I've had a colon cancer resection also, which knocked me out of it.

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