Need some help - doctor question

katefm
katefm Member Posts: 112 Member
edited March 2014 in Colorectal Cancer #1
Hi everyone-

I've posted once or twice before - my husband is Stage IV, several mets to liver and abdominal wall. We're very positive - we're the ones who are doing the card challenge. We're up over 600 cards!

Anyway - my question is this:
We live in Wisconsin. We've been working with a local doctor that we feel is proficient. We also went to MSK in NY for a second opinion. The doctor there agreed with the recommended systemic treatment in WI until a liver resection is a possibility.

Now we're sort of at a crossroads with both doctors offices. They both want my husband to have a CT Scan in February. MSK will not accept scans from another doctor's office, and our local doctor's office is having trouble reading the scan from MSK. (Something to do with the lack of measurement tools on the CD.) There are some pretty major discrepancies in the readings - some of the tumor sizes are as much as 2 cm off. Well, I realize that everyone reads a scan differently, but we need to work with one set of numbers. It's too confusing to work off two scans.

I believe that if my husband needs a resection, MSK is the place to go. However; it's a long way away, and it's not totally covered by insurance. (Not to mention that the doctor is not very warm and fuzzy, which makes the price of the plane tickets harder.)

Has anyone worked with multiple doctors? Paid for CT scans out of pocket? I want the best care we can afford, but I don't know that we can pay for a second scan out of pocket. MSK hasn't been very easy to work with, but if he's a candidate for resection...then wouldn't the cost of paying for a scan and keeping a "relationship" with MSK be worth it? Should we just work locally until this doctor says "it's time to go back to NY and see about a resection"?

Sometimes I wish I had a fairy godmother to tell me what to do. (Anyone have suggestions on someone I can discuss "the big picture" with?!)

Thanks for any advice...I really appreciate it.

Kate

Comments

  • shmurciakova
    shmurciakova Member Posts: 906 Member
    #2
    Well, I am not sure I am the "fairy godmother" but if I were you I would go the the Mayo Clinic, which is much closer and I am sure a cheaper plane ticket, they are very proficient and maybe will be more willing to work with you than MSK.

    I am a Stage IV survivor and I had my liver resection done at MD Anderson. Of course they always wanted their own scans too, at least prior to surgery. I think that is normal. For my followups until this past November I was going here in Alasaka to my regular doc 1x/year and down there 2x/year. The first year out I was going 4x/year twice there and twice here. Are you confused yet?
    I am not sure that the two places actually compared each others scans or not....I know they always compared my scans to the previous one THEY had done and as for going to two different doctors, I think they just relied on the radiologist reports.
    I never did pay for anything out of pocket, thankfully...now that it has been a while my doctors at MD Anderson still want to receive all of my test results and they want to get copies of my scans on disc, but now I no longer have to go down there, which is a huge relief in many ways (including financially!)

    If your husband is going to be operated on in New York then I would think it is normal for him to have to have a pre-op scan done there, but if he is still not ready for the resection then you could just keep going to your normal doctor.... guess you wont know that unti after the scan in February. If your doc says it is a go then you could go to MSK, or somewhere else.

    Remember, the choice is yours and the reason for going to NY is for the surgery. The onc does not matter as much as the surgeon who will be doing the resection.

    Did that help? Maybe you should go to Minneapolis instead.
    -Susan
  • nanuk
    nanuk Member Posts: 1,358 Member
    #3
    if your home onc can't read their scans, you will have the problem again..I think I would opt for a 3rd opinion that is covered by your insurance. do the written radiology reports disagree also?
  • dash4
    dash4 Member Posts: 303 Member
    #4
    HI, My husband was diagnosed Stage IV -10/04. We found a liver surgeon that was the best!! He is with UPMC-University of Pittsburgh Medical Center in Pittsburgh PA. He was the first doctor-after the diagnosis- that said -"we are going for the cure!!" I am not sure that you would want to travel to Pittsburgh, but I would at least check out their web site--It is a wealth of information about the liver. It is www.upmclivercancercenter.com Dr. David Geller was my husband's surgeon. He is a remarkable person and a talented liver surgeon. My husband's surgery was on 12/23/04 - he had a colon resection and liver resection and liver ablation. Although, my husband has had a reoccurence - the liver is still cancer free at this time. Email me if you would like any more information.
    Dash
  • katefm
    katefm Member Posts: 112 Member
    #5
    shmurciakova said:

    Well, I am not sure I am the "fairy godmother" but if I were you I would go the the Mayo Clinic, which is much closer and I am sure a cheaper plane ticket, they are very proficient and maybe will be more willing to work with you than MSK.

    I am a Stage IV survivor and I had my liver resection done at MD Anderson. Of course they always wanted their own scans too, at least prior to surgery. I think that is normal. For my followups until this past November I was going here in Alasaka to my regular doc 1x/year and down there 2x/year. The first year out I was going 4x/year twice there and twice here. Are you confused yet?
    I am not sure that the two places actually compared each others scans or not....I know they always compared my scans to the previous one THEY had done and as for going to two different doctors, I think they just relied on the radiologist reports.
    I never did pay for anything out of pocket, thankfully...now that it has been a while my doctors at MD Anderson still want to receive all of my test results and they want to get copies of my scans on disc, but now I no longer have to go down there, which is a huge relief in many ways (including financially!)

    If your husband is going to be operated on in New York then I would think it is normal for him to have to have a pre-op scan done there, but if he is still not ready for the resection then you could just keep going to your normal doctor.... guess you wont know that unti after the scan in February. If your doc says it is a go then you could go to MSK, or somewhere else.

    Remember, the choice is yours and the reason for going to NY is for the surgery. The onc does not matter as much as the surgeon who will be doing the resection.

    Did that help? Maybe you should go to Minneapolis instead.
    -Susan

    Susan-

    Good idea. I'm not sure why we didn't go to Mayo in the first place (especially when it's only a 5 hour drive...), but it seems that we might need to reconsider.

    I'll do some research. Thanks!

    Kate
  • katefm
    katefm Member Posts: 112 Member
    #6
    nanuk said:

    if your home onc can't read their scans, you will have the problem again..I think I would opt for a 3rd opinion that is covered by your insurance. do the written radiology reports disagree also?

    There's a 3rd opinion covered? ARGH. See above - we'll be driving to Mayo. :)

    Almost all the data seems to disagree - films (apparently, we've only seen one set ourselves) and written radiology reports. Even the surgical report has a different number from when the surgeon eyeballed it. Frustrating, to say the least.

    Thanks!
  • katefm
    katefm Member Posts: 112 Member
    #7
    dash4 said:

    HI, My husband was diagnosed Stage IV -10/04. We found a liver surgeon that was the best!! He is with UPMC-University of Pittsburgh Medical Center in Pittsburgh PA. He was the first doctor-after the diagnosis- that said -"we are going for the cure!!" I am not sure that you would want to travel to Pittsburgh, but I would at least check out their web site--It is a wealth of information about the liver. It is www.upmclivercancercenter.com Dr. David Geller was my husband's surgeon. He is a remarkable person and a talented liver surgeon. My husband's surgery was on 12/23/04 - he had a colon resection and liver resection and liver ablation. Although, my husband has had a reoccurence - the liver is still cancer free at this time. Email me if you would like any more information.
    Dash

    Thanks, Dash. Proof positive that some of the best doctors ARE outside NYC. I need to start looking.

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