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Scan result question… How do you handle this?

Forums General Melanoma Community Scan result question… How do you handle this?

  • Post
    marfda
    Participant

      I'm curious what you all do and what our rights are to our scan result information? I had a PET scan yesterday and the results are available to my onc by the end of that day. But, the onc's nurse called today to set up my appointment and she isn't allowed to give me the results. I have to see the doctor tomorrow afternoon. It makes me nuts that I have to wait to talk to the doctor. It sends my anxiety sky high and emotionally, I do better if I have an idea of what the scan showed and can deal with that privately before talking to the doctor.

      I'm curious what you all do and what our rights are to our scan result information? I had a PET scan yesterday and the results are available to my onc by the end of that day. But, the onc's nurse called today to set up my appointment and she isn't allowed to give me the results. I have to see the doctor tomorrow afternoon. It makes me nuts that I have to wait to talk to the doctor. It sends my anxiety sky high and emotionally, I do better if I have an idea of what the scan showed and can deal with that privately before talking to the doctor.

      I went around the system today and asked the rad onc to give me results while at my radiation appointment today (the results are online for doctors affiliated with the hospital.) So, I got around the system today, but I know if I had not had my results and the nurse had called to tell me nothing, I would be having a crazy anxiety attack.  It also feels like we as patients are treated as infants in this system. Like we can only handle having a doctor to deliver the news to us.

      PS I do understand that the results can be hard to read and interpert and people might freak out. But, in my case, I am informed and want to advocate for myself! 

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    • Replies
        lhaley
        Participant

          I've had different Doctors on how they give me the report.  Originally when I went to stage IV I wanted the information first to be given it on the phone.  I have since then given wrong info on the phone by a nurse….  She never read one part of the report.  So there I was going in all happy only to find out that there was a new area…

          Now I have a different view. My oncologist gives me the scans in the morning and that afternoon I have the Dr appointment.  The written report is not finished though so sometimes there are small changes but the Dr always re-reads the scan themself.  There are different interpretations depending on both the radiologist and the oncologist.  I've been told before that what is seen in the lungs have been questioned. At this point it's been a year because the size has not changed much.  It grows a mm or 2 and then will shrink.  

          As melanoma has advanced I do like the idea that my oncologist gives me plan A and B before I leave his office.  So as much as anxiety has built , his information has quickly given me  help.  In the future you might want to talk to your Dr ahead of time to see if he will give the info to yourself.  

          When my brain mri was bad in Oct he had already talked to both the radiologist and neurosurgeon before he even had told me the bad news. They had already conferenced ( one was actually in DC) and options were immediately given.

          Linda

          lhaley
          Participant

            I've had different Doctors on how they give me the report.  Originally when I went to stage IV I wanted the information first to be given it on the phone.  I have since then given wrong info on the phone by a nurse….  She never read one part of the report.  So there I was going in all happy only to find out that there was a new area…

            Now I have a different view. My oncologist gives me the scans in the morning and that afternoon I have the Dr appointment.  The written report is not finished though so sometimes there are small changes but the Dr always re-reads the scan themself.  There are different interpretations depending on both the radiologist and the oncologist.  I've been told before that what is seen in the lungs have been questioned. At this point it's been a year because the size has not changed much.  It grows a mm or 2 and then will shrink.  

            As melanoma has advanced I do like the idea that my oncologist gives me plan A and B before I leave his office.  So as much as anxiety has built , his information has quickly given me  help.  In the future you might want to talk to your Dr ahead of time to see if he will give the info to yourself.  

            When my brain mri was bad in Oct he had already talked to both the radiologist and neurosurgeon before he even had told me the bad news. They had already conferenced ( one was actually in DC) and options were immediately given.

            Linda

            lhaley
            Participant

              I've had different Doctors on how they give me the report.  Originally when I went to stage IV I wanted the information first to be given it on the phone.  I have since then given wrong info on the phone by a nurse….  She never read one part of the report.  So there I was going in all happy only to find out that there was a new area…

              Now I have a different view. My oncologist gives me the scans in the morning and that afternoon I have the Dr appointment.  The written report is not finished though so sometimes there are small changes but the Dr always re-reads the scan themself.  There are different interpretations depending on both the radiologist and the oncologist.  I've been told before that what is seen in the lungs have been questioned. At this point it's been a year because the size has not changed much.  It grows a mm or 2 and then will shrink.  

              As melanoma has advanced I do like the idea that my oncologist gives me plan A and B before I leave his office.  So as much as anxiety has built , his information has quickly given me  help.  In the future you might want to talk to your Dr ahead of time to see if he will give the info to yourself.  

              When my brain mri was bad in Oct he had already talked to both the radiologist and neurosurgeon before he even had told me the bad news. They had already conferenced ( one was actually in DC) and options were immediately given.

              Linda

              Phil S
              Participant
                We always try to have Cat, Pet, MRI in the morning and meet with the doctor that afternoon. Sometimes, they don’t have the final read, but they also review the scans before seeing us and tell us what they think! I get a hard copy ASAP for my records. Sometimes, they have to schedule the scans later in the day, and we do have to wait until doctor meeting the next morning. I have never waited longer than that! Also, people should be aware that these are your scans, and you have ever right to the reports ASAP. When, Phil has his scans done locally (we also have gone to Dana Farber and MD Anderson), I ask him to sign a release of information form and the scan reports are released to me later that day. Lets face it, most of us know how to read a Cat or Pet scan report by now. Advocate for yourself, and if you don’t want to wait, DON’T, these are your reports! Valerie (Phil’s wife)
                Phil S
                Participant
                  We always try to have Cat, Pet, MRI in the morning and meet with the doctor that afternoon. Sometimes, they don’t have the final read, but they also review the scans before seeing us and tell us what they think! I get a hard copy ASAP for my records. Sometimes, they have to schedule the scans later in the day, and we do have to wait until doctor meeting the next morning. I have never waited longer than that! Also, people should be aware that these are your scans, and you have ever right to the reports ASAP. When, Phil has his scans done locally (we also have gone to Dana Farber and MD Anderson), I ask him to sign a release of information form and the scan reports are released to me later that day. Lets face it, most of us know how to read a Cat or Pet scan report by now. Advocate for yourself, and if you don’t want to wait, DON’T, these are your reports! Valerie (Phil’s wife)
                  Phil S
                  Participant
                    We always try to have Cat, Pet, MRI in the morning and meet with the doctor that afternoon. Sometimes, they don’t have the final read, but they also review the scans before seeing us and tell us what they think! I get a hard copy ASAP for my records. Sometimes, they have to schedule the scans later in the day, and we do have to wait until doctor meeting the next morning. I have never waited longer than that! Also, people should be aware that these are your scans, and you have ever right to the reports ASAP. When, Phil has his scans done locally (we also have gone to Dana Farber and MD Anderson), I ask him to sign a release of information form and the scan reports are released to me later that day. Lets face it, most of us know how to read a Cat or Pet scan report by now. Advocate for yourself, and if you don’t want to wait, DON’T, these are your reports! Valerie (Phil’s wife)
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