Mayo Clinic in MN

tdatnd
tdatnd Member Posts: 7
edited March 2014 in Colorectal Cancer #1
Has anyone gone there?
I have appts next week.
I'm stage IV with mets to the liver and a cea off the charts.
Chemo since Feb but no surgeries yet. Looking for a really good liver surgeon and a miracle.

Comments

  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    #2
    Yes
    I had my diagnostics, surgeries and my oncologist is there. It runs like a Swiss Watch. They rate tops in my book for customer service. The facility is gorgeous.

    Hope you have a good experience and good luck.

    peace, emily
  • tdatnd
    tdatnd Member Posts: 7
    #3
    2bhealed said:

    Yes
    I had my diagnostics, surgeries and my oncologist is there. It runs like a Swiss Watch. They rate tops in my book for customer service. The facility is gorgeous.

    Hope you have a good experience and good luck.

    peace, emily

    Who are your doctors?

    Who are your doctors?
  • Patteee
    Patteee Member Posts: 945
    #4
    I was also treated at the
    I was also treated at the Mayo in Rochester. 3 surgeries, colorectal surgeon, Dr. Heidi Chu. Don't know their liver surgeons. Everything was incredible- top notch staff.
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    #5
    Been there
    I've gone to Mayo, but not for my colon cancer. I had several appointments and tests there before I was diagnosed with RSD. The early diagnosis gave me the chance for remission for a tough miserable disease that usually is diagnosed too late to have much success finding remission. I love the way all the staff and departments work together so well there. I hope you find what you are looking for there. I think you'll be impressed.
  • polarprincess
    polarprincess Member Posts: 202 Member
    #6
    Kathryn_in_MN said:

    Been there
    I've gone to Mayo, but not for my colon cancer. I had several appointments and tests there before I was diagnosed with RSD. The early diagnosis gave me the chance for remission for a tough miserable disease that usually is diagnosed too late to have much success finding remission. I love the way all the staff and departments work together so well there. I hope you find what you are looking for there. I think you'll be impressed.

    me too
    i also went to mayo and had dr heidu chua as my surgeon as well. my gastro doctor was lisa boardman, and my onc consult was dr henry pitot. My experience was odd, as they thought it was stage IV, then it was benign, then it was stage three..but my experience was good. you get all your results very quickly. I found the colonoscopy and ct scan prep to be much better than what i get back home. They look out for you financially and healthwise. You wait very little to get into appointments on most occasions. I was able to get into surgery almost immediately after i got my diagnosis. My stay in the hospital was great and they were excellent at being very sanitary and everyone was very nice. I don't even have to call for my follow up appts each year- they call me. The hotels in the area are very reasonable as well. we always stay at brentwood on fifth- 75 dollars a night, very nice roomy rooms and close to the gonda building..
  • tdatnd
    tdatnd Member Posts: 7
    #7
    polarprincess said:

    me too
    i also went to mayo and had dr heidu chua as my surgeon as well. my gastro doctor was lisa boardman, and my onc consult was dr henry pitot. My experience was odd, as they thought it was stage IV, then it was benign, then it was stage three..but my experience was good. you get all your results very quickly. I found the colonoscopy and ct scan prep to be much better than what i get back home. They look out for you financially and healthwise. You wait very little to get into appointments on most occasions. I was able to get into surgery almost immediately after i got my diagnosis. My stay in the hospital was great and they were excellent at being very sanitary and everyone was very nice. I don't even have to call for my follow up appts each year- they call me. The hotels in the area are very reasonable as well. we always stay at brentwood on fifth- 75 dollars a night, very nice roomy rooms and close to the gonda building..

    Thanks!
    This info makes me feel better!
    I go next week and will post an update - it has to be better than here at home.
    Any more info will be appreciated - hotels??
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    #8
    tdatnd said:

    Thanks!
    This info makes me feel better!
    I go next week and will post an update - it has to be better than here at home.
    Any more info will be appreciated - hotels??

    ACS Hope Lodge
    If you stay for treatments you can contact the Hope Lodge.
    http://www.cancer.org/docroot/subsite/hopelodge/MN_Rochester/ss_index.asp

    I've stayed at the Days' Inn - an older building but ok - cheap, with a Pannekoeken restaurant downstairs, and close to one of the Mayo buildings (you can tunnel to everywhere).

    I've also stayed at Kahler Inn & Suites (multiple times), connected to Mayo. They do have a reduced rate for patients - you just have to ask (the medical patient rate is better than any industry rate I can get). It is a little more expensive, but is a nicer hotel and includes breakfast and free parking. This is my first choice.
  • Patteee
    Patteee Member Posts: 945
    #9
    Kathryn_in_MN said:

    ACS Hope Lodge
    If you stay for treatments you can contact the Hope Lodge.
    http://www.cancer.org/docroot/subsite/hopelodge/MN_Rochester/ss_index.asp

    I've stayed at the Days' Inn - an older building but ok - cheap, with a Pannekoeken restaurant downstairs, and close to one of the Mayo buildings (you can tunnel to everywhere).

    I've also stayed at Kahler Inn & Suites (multiple times), connected to Mayo. They do have a reduced rate for patients - you just have to ask (the medical patient rate is better than any industry rate I can get). It is a little more expensive, but is a nicer hotel and includes breakfast and free parking. This is my first choice.

    we always stay at the Kahler
    we always stay at the Kahler Inn and Suites. Very nice hotel- and a great place for my family to recoup while I was hospitalized. I really like how they are so in tune with hospital patients- getting broth and jello was not a big deal at all. Everything within walking distance and connected by tunnels.
  • phoebe1017
    phoebe1017 Member Posts: 37
    #10
    Mayo
    My husband also has stage IV with over a dozen mets to the liver and his CEA levels started out at 4400+ and after 9 rounds of folfox with 5FU and Avastin his CEA levels are down to 320. His current doctor is telling him there is no end in site for chemo and he is very discouraged. We're about 4 hours from Mayo, so please let us know how your appointments go with them. Good luck!!
  • tdatnd
    tdatnd Member Posts: 7
    #11
    phoebe1017 said:

    Mayo
    My husband also has stage IV with over a dozen mets to the liver and his CEA levels started out at 4400+ and after 9 rounds of folfox with 5FU and Avastin his CEA levels are down to 320. His current doctor is telling him there is no end in site for chemo and he is very discouraged. We're about 4 hours from Mayo, so please let us know how your appointments go with them. Good luck!!

    Phoebe
    My liver is really messed up. My CEA level was 7000 in Feb. now its around 2000.
    The goal was 200 and then surgery.
    The chemo seems to just hold it at 2000 but not decreasing anymore.

    I did meet with a great surgeon at IU Cancer Center in Indy. We even talked about maybe a transplant...... OK I talked about it and she said that even with cancer she would push for it.

    I wanted a more up to date opinion on Chemo from Mayo.
    I'd do chemo for ever if it kept me alive - it sucks but its still better than pushing up grass.

    I do get depressed and try to pretend I don't have chemo but you just have to push on.

    I'd get another opinion - from a Major center like Mayo.
    Always do all that you can.

    As a caregiver push for it - my son have testicular cancer and I pushed for everything I could
    we saw Lance Armstrong's doc. We were lucky IU is only 3 hours away.
    As the patient - I find I wish my spouse was more proactive in researching and pushing me to do things. It's just too scary to do it myself. I find the best most positive info here.

    I'll post what I think of Mayo when we get back next Friday.
    Tina

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