Second opinion catch-22

progrocker
progrocker Member Posts: 22 Member
in Colorectal Cancer #1

So I started chemo as soon as I could after my surgery, and didn't want to lose time. I figured I could always get a second opinion down the road. I want one now (I have confidence in my doctors but would still like another opinion.) However, MDA and MSK won't  do a consult while I am on treatment. Have any of you run into this?

Comments

  • Butt
    Butt Member Posts: 352 Member
    #2

    BS. Every time I wanted the second opinion and one was in MD Anderson they were given it to me while on treatment. Butt.

  • progrocker
    progrocker Member Posts: 22 Member
    edited October 2018 #3
    Butt said:

    BS. Every time I wanted the second opinion and one was in MD Anderson they were given it to me while on treatment. Butt.

    Butt, if you don't mind my

    Butt, if you don't mind my asking, at what phase of your treatment were you in? They gave me a lot of pushback on the phone. Wonder how to break through that... thank you!

  • abita
    abita Member Posts: 1,152 Member
    edited October 2018 #4
    Did they give you reasons?

    Did they give you reasons? Are you doing mop up chemo? Or do you have mets that you are concerned about treating.i think there is more to it than you are being treated. I have a recurrence and got a second opinion after my first round. She even called my current doctor to discuss my treatment. She is testing me for possible treatments that will work for me down the road if "lifetime chemo" is my fate. She did agree with my doctor that systemic chemo is the correct first step to shrink my mets and hopefully kill any hidden of those pesky cells. I did have to submit my information and have the team decide if my case was a fit for them. They are inundated with requests I would imagine. 

  • progrocker
    progrocker Member Posts: 22 Member
    edited October 2018 #5
    abita said:

    Did they give you reasons?

    Did they give you reasons? Are you doing mop up chemo? Or do you have mets that you are concerned about treating.i think there is more to it than you are being treated. I have a recurrence and got a second opinion after my first round. She even called my current doctor to discuss my treatment. She is testing me for possible treatments that will work for me down the road if "lifetime chemo" is my fate. She did agree with my doctor that systemic chemo is the correct first step to shrink my mets and hopefully kill any hidden of those pesky cells. I did have to submit my information and have the team decide if my case was a fit for them. They are inundated with requests I would imagine. 

    They just told me they would

    They just told me they would not interfere with treatment once it was underway and I would have to stop treatment to get a consult. I have just started the chemo.. so no big concerns at this point. I just thought it might be good to have someone else review my course of treatment and see if they agree with it

  • Butt
    Butt Member Posts: 352 Member
    #6

    I was on Folfox the 1st line. I had the second opinions in the beginning and toward the end of those cycles. Another one I had I was off Folfox but was getting chemo thru the HAI pump straight to my liver. So, I wa in active treatments. Butt.

  • progrocker
    progrocker Member Posts: 22 Member
    edited October 2018 #7
    Butt said:

    I was on Folfox the 1st line. I had the second opinions in the beginning and toward the end of those cycles. Another one I had I was off Folfox but was getting chemo thru the HAI pump straight to my liver. So, I wa in active treatments. Butt.

    This really helps me. Thank

    This really helps me. Thank you!

  • NewHere
    NewHere Member Posts: 1,429 Member
    #8
    MD Anderson Was HE--

    To deal with.  An absolutely horrific experience that I finally gave up on since cancer was less stressful.

    People will give a second opinion even with being on treatment

    You can get remote opinions from https://www.grandrounds.com/

    Cleveland Clinic has a option and so do others.

  • progrocker
    progrocker Member Posts: 22 Member
    #9
    NewHere said:

    MD Anderson Was HE--

    To deal with.  An absolutely horrific experience that I finally gave up on since cancer was less stressful.

    People will give a second opinion even with being on treatment

    You can get remote opinions from https://www.grandrounds.com/

    Cleveland Clinic has a option and so do others.

    Thank you!!!

    Thank you!!!

  • Pamcakes
    Pamcakes Member Posts: 112 Member
    #10
    After my husband started

    After my husband started Chemo for stage 4 We decided to contact MDA after his first cycle. We had zero issues. I called the number on the website, gave them info, insurance info & overview and the oncologist here in WV. They told us up front the would not see him until he completed the 4th cycle when scans would be completed. In the mean time they contact the insurance company, the oncologist and surgeon, etc and got us scheduled right after the 4 th cycle. We’ve been going to them since last year with no issues at all. i am sorry your experience with MDA was not positive as it has been for my Husband. We travel there around every 3-4 months, they have developed his plan of care and communicate with the oncologist and now the radiologist here in WV. If surgery is needed after the 7 weeks of radiatio, that will be done at MDA. Also we have the patient portal and are able to communicate with the team there and have received excellent care in that area as well. did you call the main office or one of the other locations? I hope their process hasn’t declined. 

  • NewHere
    NewHere Member Posts: 1,429 Member
    #11
    Pamcakes said:

    After my husband started

    After my husband started Chemo for stage 4 We decided to contact MDA after his first cycle. We had zero issues. I called the number on the website, gave them info, insurance info & overview and the oncologist here in WV. They told us up front the would not see him until he completed the 4th cycle when scans would be completed. In the mean time they contact the insurance company, the oncologist and surgeon, etc and got us scheduled right after the 4 th cycle. We’ve been going to them since last year with no issues at all. i am sorry your experience with MDA was not positive as it has been for my Husband. We travel there around every 3-4 months, they have developed his plan of care and communicate with the oncologist and now the radiologist here in WV. If surgery is needed after the 7 weeks of radiatio, that will be done at MDA. Also we have the patient portal and are able to communicate with the team there and have received excellent care in that area as well. did you call the main office or one of the other locations? I hope their process hasn’t declined. 

    It Was BRUTAL

    I got jerked around like you would not believe.  It ws past infuriating.  The first person I spoke to was awesome, took down everything on a phone call and switched me to the gastro department where it went so incredibly horrible that Josef K would have had pity on me.  I start twitching just thinking about how bad it was.  Incredible incompetance and lack of abiilty to communicate from the person assigned to help me.  It was some outlandish freakish joke.  

  • progrocker
    progrocker Member Posts: 22 Member
    #12
    Hey thanks everybody. I will

    Hey thanks everybody. I will keep trying both MDA and MSK, which gave a little hope at least that they could see me after the first scan. You all are great.

  • progrocker
    progrocker Member Posts: 22 Member
    #13
    Pamcakes said:

    After my husband started

    After my husband started Chemo for stage 4 We decided to contact MDA after his first cycle. We had zero issues. I called the number on the website, gave them info, insurance info & overview and the oncologist here in WV. They told us up front the would not see him until he completed the 4th cycle when scans would be completed. In the mean time they contact the insurance company, the oncologist and surgeon, etc and got us scheduled right after the 4 th cycle. We’ve been going to them since last year with no issues at all. i am sorry your experience with MDA was not positive as it has been for my Husband. We travel there around every 3-4 months, they have developed his plan of care and communicate with the oncologist and now the radiologist here in WV. If surgery is needed after the 7 weeks of radiatio, that will be done at MDA. Also we have the patient portal and are able to communicate with the team there and have received excellent care in that area as well. did you call the main office or one of the other locations? I hope their process hasn’t declined. 

    I called the main number.

    I called the main number. Your story is encouraging... do you have any advice how to break through "the wall"? Did you tell them you wanted a second opinion? All the best to you and your husband

  • Butt
    Butt Member Posts: 352 Member
    #14

    Ask your oncologist for a referral.

  • progrocker
    progrocker Member Posts: 22 Member
    #15
    Butt said:

    Ask your oncologist for a referral.

    Oh that is a good idea. Thank

    Oh that is a good idea. Thank you

  • Pamcakes
    Pamcakes Member Posts: 112 Member
    #16
    progrocker said:

    I called the main number.

    I called the main number. Your story is encouraging... do you have any advice how to break through "the wall"? Did you tell them you wanted a second opinion? All the best to you and your husband

    Yes we told them we needed a

    Yes we told them we needed a second opinion and had communicated that with the local dr.. I believe they sent the records in when we called. That may have been the difference. We did nothing else, but get in a plane and show up for the appointment. I will say that there are many other great cancer centers, so if MDA isn’t a fit try one that is. You should not be treated the way you were from any medical providers and I’m very disappointed to hear of your struggles. Maybe you could look online and find the number to report this. after Thinking about it, I remembered when my husband was getting a colonoscopy there, the Gastro department did not call in a prep and when I asked the office prior the MA told us just to take an OTC laxatibe. I knew this was wrong and called the dr. I was going to report her, but after the long 9 days we were there on that visit, I forgot. 

  • progrocker
    progrocker Member Posts: 22 Member
    #17
    Update: I got the wheels in

    Update: I got the wheels in motion for a consult at MSK. It is a bit tricky, as I have to go between my next PET scan and the following treatment (which could be a window of just a couple days) but it will work out. You all really encouraged me to pursue this.. Thank you!

  • sworla
    sworla Member Posts: 1
    #18
    Butt said:

    I was on Folfox the 1st line. I had the second opinions in the beginning and toward the end of those cycles. Another one I had I was off Folfox but was getting chemo thru the HAI pump straight to my liver. So, I wa in active treatments. Butt.

    I have a consultation with a

    I have a consultation with a surgeon on Monday for HAI pump. How long have you had the HAI pump and did your oncologist refer you to a surgeon?  

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