re: MD Anderson won't do second opinions

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musiclover
musiclover Member Posts: 242
edited March 2014 in Colorectal Cancer #1
In the back of my mind I've been thinking I'd take Mark to MD Anderson if he needs (another) second opinion. Well I am shocked to discover that they will not do a second opinion "at this time." They will only see patients that intend on being treated there. That would almost be worth Mark uprooting himself from his life, job and network of support IF he had health insurance. Unfortunately he does not - only for the state of California. For people like him, they need to put up a $13,200 deposit before they will make an appointment. This is a real disapointment. The other consideration is Sloan Kettering for the second opinion.

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  • vinny3
    vinny3 Member Posts: 928 Member
    #2
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    I don't know why they do that. Alot of times patients end up getting the treatment from the second opinion giver as they often feel like they get more information. The provider giving the second opinion is not supposed to do the treating but usually an exception is made if the patient desires it. Have you considered the Mayo Clinic? They have a facility in Scottsdale, Arizona. Or in California there should be some other good providers that will give a second opinion. There are a number of people on this website who live in California and will probably post on this.

    Good Luck and we will pray for Mark getting the information and care he needs.

    ****
  • JADot
    JADot Member Posts: 709 Member
    #3
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    Why not try UCSF and Stanford? Both are 1st class places and in CA.
  • musiclover
    musiclover Member Posts: 242
    #4
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    JADot said:

    Why not try UCSF and Stanford? Both are 1st class places and in CA.

    I'm at odds with the clinical trials, at least for those with stage IV. For one, there is no end in site. Other's treatments I continue to read are "I went on so-and-so for 4 months...". With the Clinical Trials there is no definitive end. They continue until 1) the patient decides to go off themselves 2) if the cancer begins to grow again 3) if the patient dies, obviously.

    Question - there seems to be a point where the trial has done it's job, tumors have shrunk, surgery may now be possible BUT the doctors continue with the trial until it shows progression again. At this point, the point my friend Mark is at now, they will need to be taken off the trial and put on a new one. This leaves no opportunity for doing a surgery to remove the smaller, shrunken lesions. Mark's last doctor explained before be began the last trial how noble it would be for him to do this since he would be paving the way for future cancer victims, doesn't matter that he dies in the meantime. If I'm sounding bitter, I am. I would love some thoughts on this...
  • houseofclay
    houseofclay Member Posts: 63
    #5
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    musiclover said:

    I'm at odds with the clinical trials, at least for those with stage IV. For one, there is no end in site. Other's treatments I continue to read are "I went on so-and-so for 4 months...". With the Clinical Trials there is no definitive end. They continue until 1) the patient decides to go off themselves 2) if the cancer begins to grow again 3) if the patient dies, obviously.

    Question - there seems to be a point where the trial has done it's job, tumors have shrunk, surgery may now be possible BUT the doctors continue with the trial until it shows progression again. At this point, the point my friend Mark is at now, they will need to be taken off the trial and put on a new one. This leaves no opportunity for doing a surgery to remove the smaller, shrunken lesions. Mark's last doctor explained before be began the last trial how noble it would be for him to do this since he would be paving the way for future cancer victims, doesn't matter that he dies in the meantime. If I'm sounding bitter, I am. I would love some thoughts on this...

    I am going to see if I can help unravel this for you but it may take a lengthy post. Please be patient...

    Perhaps Mark should see an oncological surgeon to discuss what improvement needs to happen to make Mark a surgical candidate. I think many times medical oncologists make surgery decisions that aren't appropriate and surgeons make chemotherapy decisions outside their area of expertise. So speaking with a surgeon first might help point you to what course of action would be best for Mark.

    If Mark was responding to a particular treatment (and I seem to remember he has in the past) whether the treatment was a clinical trial or not, was he a surgical candidate but the cancer progressed or has a surgeon even looked at his scans/tests during this process? I know it sounds a bit nitpicky but I think it can be an important distinction. A doctor who specializes in interventional treatment might be the best person to offer a second opinion right now. I would think Southern California has several to choose from but if you need help, reply to this post and I'll contact you off list.

    I do know the conventional wisdom in surgical evaluations is any lung tumors have to be small in both size and number. I cannot recall what Mark's current situation is--sorry about that.

    I hope that helps a bit. I know you are frustrated and rightly so but maybe there is another way of looking at this that might help make the treatment decisions become more clear. I do applaud Mark's past participation in trials. He has already helped future patients.
  • musiclover
    musiclover Member Posts: 242
    #6
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    musiclover said:

    I'm at odds with the clinical trials, at least for those with stage IV. For one, there is no end in site. Other's treatments I continue to read are "I went on so-and-so for 4 months...". With the Clinical Trials there is no definitive end. They continue until 1) the patient decides to go off themselves 2) if the cancer begins to grow again 3) if the patient dies, obviously.

    Question - there seems to be a point where the trial has done it's job, tumors have shrunk, surgery may now be possible BUT the doctors continue with the trial until it shows progression again. At this point, the point my friend Mark is at now, they will need to be taken off the trial and put on a new one. This leaves no opportunity for doing a surgery to remove the smaller, shrunken lesions. Mark's last doctor explained before be began the last trial how noble it would be for him to do this since he would be paving the way for future cancer victims, doesn't matter that he dies in the meantime. If I'm sounding bitter, I am. I would love some thoughts on this...

    Whoops, I posted this in the wrong place! I'm going to start a new thread. Thanks to those who have responded so far.
  • shorty6
    shorty6 Member Posts: 15
    #7
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    My daughter has received a 2nd opinion from a very fine oncologist at USC. If you would like his name, let me know.

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