Anyone gone to Mayo Clinic in Rochester Minnesota for carcinoid tumors?

Posted by lucci50 @lucci50, Nov 21, 2015

has anyone used mayo clinic in Rochester Minnesota for carcinoid tumors. the diagnosis was carcinoid tumors in the liver. I am looking for the best place to go to treat/and or remove the disease. appreciate any advise.

@colleenyoung

Hi Ralph,
We use a list of criteria when choosing where to get treatment. Location and proximity are important factors.

How long is your treatment plan? Are you managing the side effects okay?

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@lucci50 How are you doing with the sandostatin injections? Are they helping your symptoms? I know you were going to the Cleveland Clinic. Do you still check in with them? Teresa

@colleenyoung

Hi @lucci50
Welcome to Connect. The cancer care team at the Rochester campus of the Mayo Clinic are among the county’s best. But, as the Community Director of Connect, you’d expect me to say that. Would you have far to travel to Rochester?

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I would be curious to know what research you did that pointed you to Mayo? I don’t disagree with you, but would love to see the basis.

My wife is treated @ Mayo Rochester. NET ileum with METs to the liver. Two major surgeries 2015, 2016) with Dr. Nagorney. She see Oncologist Dr. Thor Halfdanarson who trained under Dr. Thomas O’Dorisio (a leading NET specialist).

We like Dr. Halfdanarson very much. First saw him speak at a patient directed NET conference in Minneapolis. Before deciding where to go we workrd with Dr. O’Dorisio (Iowa), Dr. Woltering (New Orleans) and Mayo.

We live 4 hours away by car in Wisc, so staying closer to home was a consideration.

With Obamacare, we can no longer buy any health insurance policy in Wisc. which includes Mayo. This year we had to petition our health insurance provider 3 times to include Mayo for one visit – blood work, Ga-68, MRI, bloodwork and office visit. My argument to convince them that People with NETs should be seen by a specialist. They want her to be seen at in-network U.W. Health in Madison.

After all that effort, we were disappointed with the appt. because it started an hour late and we didn’t see Dr. Halfdanarson, only a Nurse Practioner who was challenging to understand, very rushed and seemed unsure of herself. It was not a quality visit, especially for an 8-hour round trip drive. Our insurance company would give us push back that in the end my wife was seen by a midlevel. We love mid-levels – our daughter is a Physician Asst. in Nephrology.

Moreover, the ISI 5-HIAA serum test requires a nighttime fast (verified to me by ISI), but there were no fasting instructions from Mayo. I even called Mayo to triple check this and was told that if it isn’t on your appt. guide, you don’t need to fast.

The MRI indicated a new small (9mm) liver tumor. My wife is due for a repeat MRI in two months. We will have to petition our health insurance provider again. I’m trying to figure out how to make sure we avoid a similar experience.

@colleenyoung

Hi @lucci50
Welcome to Connect. The cancer care team at the Rochester campus of the Mayo Clinic are among the county’s best. But, as the Community Director of Connect, you’d expect me to say that. Would you have far to travel to Rochester?

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Hi @tomewilson, we’d like to help you and your wife avoid a repeat experience like you shared here. Thanks for telling us about it. I’m sending you a private message.

@colleenyoung

Hi @lucci50
Welcome to Connect. The cancer care team at the Rochester campus of the Mayo Clinic are among the county’s best. But, as the Community Director of Connect, you’d expect me to say that. Would you have far to travel to Rochester?

Jump to this post

How do I delete old messages?

@colleenyoung

Hi @lucci50
Welcome to Connect. The cancer care team at the Rochester campus of the Mayo Clinic are among the county’s best. But, as the Community Director of Connect, you’d expect me to say that. Would you have far to travel to Rochester?

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Hello @gaylejean – do you mean the private messages another member sent to you in your Message Center? If so, you just check the box next to each message you want to Delete and select Delete under Bulk Actions, then click Apply.

John

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