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.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

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?

REPLY

Hi! I was dx'ed with Stage 4 melanoma in 2009. I was given 6 months to live. I had a mass pressing against my superior vena cava and cutting off the blood supply to the upper half of my body.Initially they said I was inoperable...but at that point I had nothing left to lose. I had a consult with the thoracic surgeon, Dr. Robert Shen and he performed a thoracotomy and I have been cancer free ever since. I did go into a clinical trial to prevent recurrence and I did a 30 month trial in Florida. It was the first trial for my kind of cancer using an anti-pd-1 called Nivolumab, now known as Opdivo. I have been cancer free for 5 1/2 years. It is my understanding that Mayo is using Keytruda, Opdivo and other immunotherapies - all which are cutting edge treatments- I highly recommend Mayo Clinic in Rochester!! Good Luck! Lynn PS...what kind of cancer do you have??

REPLY
@lynnkay1956

Hi! I was dx'ed with Stage 4 melanoma in 2009. I was given 6 months to live. I had a mass pressing against my superior vena cava and cutting off the blood supply to the upper half of my body.Initially they said I was inoperable...but at that point I had nothing left to lose. I had a consult with the thoracic surgeon, Dr. Robert Shen and he performed a thoracotomy and I have been cancer free ever since. I did go into a clinical trial to prevent recurrence and I did a 30 month trial in Florida. It was the first trial for my kind of cancer using an anti-pd-1 called Nivolumab, now known as Opdivo. I have been cancer free for 5 1/2 years. It is my understanding that Mayo is using Keytruda, Opdivo and other immunotherapies - all which are cutting edge treatments- I highly recommend Mayo Clinic in Rochester!! Good Luck! Lynn PS...what kind of cancer do you have??

Jump to this post

<br />
<br />
<br />
<br />
<br />
<br />
Carcinoid tumors in the liver. Thanks for the information. It gives more confidence. <br />

REPLY
@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

Yes i would travel dont really want to but looks like i have to. My research shows it would be the best.

REPLY
@lynnkay1956

You will be in great hands!!

Jump to this post

Thankyou. God bless you!!!

REPLY

when I was dx'ed initially we were living in north central North Dakota. It was a 8 1/2 hour drive each way...and I think we drove through tornadoes and blizzards every single time đŸ™‚ but it was well worth it! Now we live in central Wisconsin and it's only 2 1/2 hours west of us.

REPLY

@lynnkay1956 that's a lot of driving. What advice would you give to people who drive so far for treatment? How to prepare for the trip and especially dealing with the fatigue and side effects after get treatment. Did you often stay overnight in Rochester?

REPLY
@lynnkay1956

Hi! I was dx'ed with Stage 4 melanoma in 2009. I was given 6 months to live. I had a mass pressing against my superior vena cava and cutting off the blood supply to the upper half of my body.Initially they said I was inoperable...but at that point I had nothing left to lose. I had a consult with the thoracic surgeon, Dr. Robert Shen and he performed a thoracotomy and I have been cancer free ever since. I did go into a clinical trial to prevent recurrence and I did a 30 month trial in Florida. It was the first trial for my kind of cancer using an anti-pd-1 called Nivolumab, now known as Opdivo. I have been cancer free for 5 1/2 years. It is my understanding that Mayo is using Keytruda, Opdivo and other immunotherapies - all which are cutting edge treatments- I highly recommend Mayo Clinic in Rochester!! Good Luck! Lynn PS...what kind of cancer do you have??

Jump to this post

<br />
<br />
<br />
<br />
<br />
<br />
Thanks carcinoid tumors/liver.<br />

REPLY

Hi @lucci50 How are you doing? Have you got an appointment date?

REPLY
Please sign in or register to post a reply.