Unsure how to proceed

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imagineit2010
imagineit2010 Member Posts: 152 Member
edited March 2014 in Colorectal Cancer #1
How does a second opinion work? I'm currently involved (no treatment so far but many tests) with a reputable national accredited cancer center. I'm not fully on board with their recomended treatment plan so I've been gathering alot of info. on the net. The only place around that I would consider going for a second opinion is not in my insurance network meaning, no coverage. I guess I could see paying on my own for a consult but what about all the tests? Will an Oncologist use tests performed at a different facilty (system) or will they want to perform their own tests? I'm already in a tough financial spot so there's now way I can dish out $$$ for new tests. However, is a second opinion really valid just looking at the same test results? Also if one test could be done, which would you think is the most informative? I've had a colonoscopy, 2 CTs,EUS, rigid anoscope, MRI, 2 blood tests, PET scan, & lymph node biopsy. I have entire lymph system activity on PET scan that is undetermined/ unknown reason. Thus far all tests show rectal tumor is only involvement.(stage2 T3). It's going on four months since diagnosed so I've got to make a move. One way or another...

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  • geotina
    geotina Member Posts: 2,111 Member
    #2
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    Plan
    What is the treatment plan they are recommending? When George was diagnosed with Stage IV, mets to liver and lungs, I found that if I was in New York, Texas, California or here in Michigan the treatment right out of the gate would have been the same. Some facilities will accept the records you currently have to give you an opinion only, if you go with them for treatment, they usually want their own tests, scans, etc. I'm sure others will chime in.

    Why would you go with a center not covered by your insurance for a second opinion? If you decided to go with them, you would have no coverage.

    What treatment are they recommending?
  • Patteee
    Patteee Member Posts: 945
    #3
    Options
    The oncologist group I
    The oncologist group I worked with only did a PET- all my surgery records and tests were right in front of them. I can't imagine an oncologist would need any more testing than what you have already had done. You could call them and find out? My 2 opinions came before surgery- the only test I had done was the colonoscopy. The first surgeon wanted to do tests dealing with the surgery- the second one, at Mayo, not only did all the tests, but also repeated the colonoscopy. The chemo recommendation, after surgery and after staging of the cancer was a pretty standard uniform recommendation, it made no sense to get another opinion. What I did then look for was a clinic close to home where I was comfortable with the oncologist and the nurses.
  • Crow71
    Crow71 Member Posts: 679 Member
    #4
    Options
    Use the phone
    I went to Sloan in NYC last week for a 2nd opinion. I had the nurses here at Wake Forest fax all my records to them. I mailed copies of my scans to them. We got a good deal on Priceline for air fare and hotel. The doctor examined me, but mostly we just talked. I think a phone conversation would have sufficed. My onc. said that it is not rare for a 2nd opinion to happen over the phone. It's not as good as face to face, but a phone conversation with a Dr. who has looked at your records and scans is not bad. My Onc also helped me with moving up my MD Anderson appointment. (We cancelled the MD Anderson appointment after hearing the Sloan Dr. tell us that Wake is the best place for me to be.) Hope this helps.
    Roger
  • kimby
    kimby Member Posts: 797
    #5
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    2nd Opinion
    Thank you for this thorough list! I appreciate the info and your willingness to share all the research time and posting time. Wonderful.

    Kimby
    Outwit. Outplay. Outlast. What do you mean by 'close to home'? That is different for everyone. I drive 75 miles for everything (150 mi round trip). I've done that for 1 1/2 yrs. For rads I drove everyday; for chemo and 'other' appts I drive 2-3 days a week. Since I'm in a rural area this is local for me.

    Yes there is an onc that comes into town once a week and I drive past several cancer clinics on my way to mine. This is what works for me and this is the place I chose after getting many opinions. I was a year into treatments when I moved to stage IV and was closer for that first year.

    If you aren't happy with your current plan, get other opinions. Find the right place for you. Get as many opinions as you need. Sometimes your local group will allow you to follow another’s group’s treatment plan, but if you aren't comfortable there, don't go there. Go somewhere that your insurance will cover.

    Good luck and let us know what you decide to do.


    Kimby
    Outwit. Outplay. Outlast.
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #6
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    Understand your concerns
    I was tentatively diagnosed with rectal tumor the week before Christmas 2009 with a firm diagnosis the middle of January this year. Surgery scheduled for March 19.

    It seems you have had a lot of tests, and perhaps your doctors were just trying to get full picture or it many be just their standard proticol.

    You ask if a second opinion works...it depends on you. If you don't agree with their recommended treatment and they are not willing to offer you other options based on your desires, then you have nothing to lose by getting a second opinion...but that opinion may not differ much from the one you have and you need to be prepared for that.

    Test results belong to you and certainly can be taken with you for second opinion. If that doctor or team feels they need new ones or others in order to be able to consider other alternatives, then you can contact your insurance company about the specifics.

    I was not totally on board with the first treatment options my doctor gave me either...in part because I didn't know enough to judge it and because I was adverse to some of the plan. I was open with him, and told him what I was comfortable with. If you and the team can come to an agreement, even if it differs from their standard, then you are in good shape.

    The bottom line...it is your life...your body...your choice. If you don't have confidence in the team and/or the plan, then you must look for another team.

    Good luck with your treatment, whatever it may be. Stay in touch with us on the board and let us know how things go.

    Marie
  • imagineit2010
    imagineit2010 Member Posts: 152 Member
    #7
    Options
    kimby said:

    2nd Opinion
    Thank you for this thorough list! I appreciate the info and your willingness to share all the research time and posting time. Wonderful.

    Kimby
    Outwit. Outplay. Outlast. What do you mean by 'close to home'? That is different for everyone. I drive 75 miles for everything (150 mi round trip). I've done that for 1 1/2 yrs. For rads I drove everyday; for chemo and 'other' appts I drive 2-3 days a week. Since I'm in a rural area this is local for me.

    Yes there is an onc that comes into town once a week and I drive past several cancer clinics on my way to mine. This is what works for me and this is the place I chose after getting many opinions. I was a year into treatments when I moved to stage IV and was closer for that first year.

    If you aren't happy with your current plan, get other opinions. Find the right place for you. Get as many opinions as you need. Sometimes your local group will allow you to follow another’s group’s treatment plan, but if you aren't comfortable there, don't go there. Go somewhere that your insurance will cover.

    Good luck and let us know what you decide to do.


    Kimby
    Outwit. Outplay. Outlast.

    It is what it is
    Wow Kimby, I don't know if I could do that... Problem is, I'm the sole source of income for my family (wife & 2 children). My boss has been great about taking off time for testing but I have to keep working. My wife hasn't found work since we moved last year and I'm barely paying bills right now. My short term disability won't even cover my house payment. I just bought a house last year and I still have my previous house that I'm stuck paying on and can't sell. I'm not even sure how I'm going to manage time off for surgery let alone traveling for treatments. I'm fortunate to be in an area with two well known cancer centers within 20 miles of each other. One is covered, one is not. My health ins. has been great so far (after a rocky start) but at $800.00 a month I certainly can't keep it without working. I'm still just weighing the pros and cons of the situation. Thanks for the input...
  • imagineit2010
    imagineit2010 Member Posts: 152 Member
    #8
    Options
    geotina said:

    Plan
    What is the treatment plan they are recommending? When George was diagnosed with Stage IV, mets to liver and lungs, I found that if I was in New York, Texas, California or here in Michigan the treatment right out of the gate would have been the same. Some facilities will accept the records you currently have to give you an opinion only, if you go with them for treatment, they usually want their own tests, scans, etc. I'm sure others will chime in.

    Why would you go with a center not covered by your insurance for a second opinion? If you decided to go with them, you would have no coverage.

    What treatment are they recommending?

    nothing unusual
    The treatment plan is pretty staight forward. I guess. I'm stage 2, T3. They're recomending Chemoradiation for six weeks then six weeks recovery then surgery then more chemo. But, my tumor is 1cm from anal verge meaning almost guarantee that I'll have permanent colostomy. So I'm not sure chemo and radiation before surgery is needed. I feel if I'm not saving my "working parts" why subject my body to the problems associated with the chemo and radiation. The surgeon wants to "try" to save the rectum but I'm afraid it's for his benefit (gained experience) not mine. Just a feeling... Also, they don't want to figure out why my lymph nodes are enlarged and active (under PET scan) before treatment starts. I'm concerned if I have another issue I'm fighting inside my system will be at risk from the chemo and rad.

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