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I’m so CONFUSED!!!
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I’m so CONFUSED!!!

› Forums › General Melanoma Community › I’m so CONFUSED!!!

  • Post
    • December 12, 2014 at 3:24 pm
    eturner82
    Participant

      Hi guys I'm in need of any and all advice, My husband just finished Yervoy and had scans 4 weeks out…. Dr meet with us and stated no new bone growth and we would rescan in 3 months. Great news I know!! the problem is yesterday dr called and said he had pulled the scan to tell us before he had read the report that came with it. He said the CT report that I would be reading in my husbands mychart was going to be very concerning to me as it would read that a lung nodule had increased in size by 1mm but that he had looked and looked at it and saw no enlargement at all.I was ok with this news knowing things get bigger before smaller with ipi, dr said trust him and continue with 3 month plan. I then got on his mychart to look at the repost myself it states…….. three 3mm nodules increased to 4mm and one 4mm to 5mm…. NEW 6mm pulmonary nodule NEW 5MM pulmonary ( all in  middle lobe)also a NEW 9MM nodule within the upper lobe. New thicking at the suture line at right middle lobe resection area concerning for recurrent disease. Also New destructive osseous lesion of the 5th right rib and 4th and 6th  left rib. Also many lymph nodes in the chest have enlarged. I'm very confused as to why the doctor failed to say anything about the new growths. I am VERY  upset at this point and have no clue what to do… 3 months seems a really long time to go between scan….. up to this point bone mets in spine and hips was our major problem. So if anyone has any advice please give it.

      Emily

    Viewing 20 reply threads
    • Replies
        • December 12, 2014 at 4:06 pm
        Sheepsandcows
        Participant

          Emily

          I would be confused too.

          If I were you, I would ask for a second opinion.

          M

          • December 12, 2014 at 4:06 pm
          Sheepsandcows
          Participant

            Emily

            I would be confused too.

            If I were you, I would ask for a second opinion.

            M

            • December 12, 2014 at 4:06 pm
            Sheepsandcows
            Participant

              Emily

              I would be confused too.

              If I were you, I would ask for a second opinion.

              M

              • December 12, 2014 at 4:15 pm
              BP
              Participant

                Who is your doctor? Have you had an office visit since this scan? I would politely request an explanation immediately. It has to be a miscommunication or oversight or both. Best wishes.

                  • December 12, 2014 at 4:20 pm
                  BP
                  Participant

                    Hi again: I'm new to this and don't think I can edit my post so am replying to my own post. I re-read your post a now it registered. Sounds like he incompetent to me. I would go over his head and report this. This is unacceptable practice in my opinion. 

                    • December 12, 2014 at 4:20 pm
                    BP
                    Participant

                      Hi again: I'm new to this and don't think I can edit my post so am replying to my own post. I re-read your post a now it registered. Sounds like he incompetent to me. I would go over his head and report this. This is unacceptable practice in my opinion. 

                      • December 12, 2014 at 4:20 pm
                      BP
                      Participant

                        Hi again: I'm new to this and don't think I can edit my post so am replying to my own post. I re-read your post a now it registered. Sounds like he incompetent to me. I would go over his head and report this. This is unacceptable practice in my opinion. 

                      • December 12, 2014 at 4:15 pm
                      BP
                      Participant

                        Who is your doctor? Have you had an office visit since this scan? I would politely request an explanation immediately. It has to be a miscommunication or oversight or both. Best wishes.

                        • December 12, 2014 at 4:15 pm
                        BP
                        Participant

                          Who is your doctor? Have you had an office visit since this scan? I would politely request an explanation immediately. It has to be a miscommunication or oversight or both. Best wishes.

                          • December 12, 2014 at 5:49 pm
                          arthurjedi007
                          Participant

                            Hmm. Something doesn't sound right. Yes politely ask what is going on. If that report is true I would try to get on Keytruda as soon as possible.

                            Artie

                             

                            • December 12, 2014 at 5:49 pm
                            arthurjedi007
                            Participant

                              Hmm. Something doesn't sound right. Yes politely ask what is going on. If that report is true I would try to get on Keytruda as soon as possible.

                              Artie

                               

                              • December 12, 2014 at 5:49 pm
                              arthurjedi007
                              Participant

                                Hmm. Something doesn't sound right. Yes politely ask what is going on. If that report is true I would try to get on Keytruda as soon as possible.

                                Artie

                                 

                                • December 12, 2014 at 6:02 pm
                                eturner82
                                Participant

                                  Thanks guys I am just in shock from this and can't really take it all in. I will be calling his oncologist Monday, I have also called his PCP(  his family doctor who happens to be a good friend) and asked him to look over my husbands chart and explain it to me. Thanks for the listening ears!!

                                  Emily

                                   

                                  • December 12, 2014 at 6:02 pm
                                  eturner82
                                  Participant

                                    Thanks guys I am just in shock from this and can't really take it all in. I will be calling his oncologist Monday, I have also called his PCP(  his family doctor who happens to be a good friend) and asked him to look over my husbands chart and explain it to me. Thanks for the listening ears!!

                                    Emily

                                     

                                    • December 12, 2014 at 6:02 pm
                                    eturner82
                                    Participant

                                      Thanks guys I am just in shock from this and can't really take it all in. I will be calling his oncologist Monday, I have also called his PCP(  his family doctor who happens to be a good friend) and asked him to look over my husbands chart and explain it to me. Thanks for the listening ears!!

                                      Emily

                                       

                                      • December 12, 2014 at 6:05 pm
                                      kylez
                                      Participant

                                        Emily, when there's confusion — and/or a fork in the road —  I'm a big believer in 2nd opinions. -Kyle

                                          • December 13, 2014 at 3:06 am
                                          kylez
                                          Participant

                                            One thing I forgot to say about the second opinions I've gotten — they've all been from melanoma specialist oncologists.

                                            • December 13, 2014 at 3:06 am
                                            kylez
                                            Participant

                                              One thing I forgot to say about the second opinions I've gotten — they've all been from melanoma specialist oncologists.

                                              • December 13, 2014 at 3:06 am
                                              kylez
                                              Participant

                                                One thing I forgot to say about the second opinions I've gotten — they've all been from melanoma specialist oncologists.

                                              • December 12, 2014 at 6:05 pm
                                              kylez
                                              Participant

                                                Emily, when there's confusion — and/or a fork in the road —  I'm a big believer in 2nd opinions. -Kyle

                                                • December 12, 2014 at 6:05 pm
                                                kylez
                                                Participant

                                                  Emily, when there's confusion — and/or a fork in the road —  I'm a big believer in 2nd opinions. -Kyle

                                                  • December 12, 2014 at 6:51 pm
                                                  BrianP
                                                  Participant

                                                    Emily,

                                                    That sounds confusing to me as well.  I agree with the other comments and would call the oncologist immediately for clarification and as Art said, if new mets are true push for Keytruda.  A 1 or 2 mm difference to me is not alerting.  Sometimes the clarity of the images are very difficult to discern a 1 or 2 mm difference and as you mentioned Ipi can cause inflamation which makes mets appear larger.  I had a thickening at the suture line on one of my scans a while back which turned out to be nothing.  The reports of the new nodules to me is concerning and very puzzling the oncologist wouldn't mention these.  Good on you for being proactive and advocating for your husband.  Hang in there!

                                                    Brian

                                                    • December 12, 2014 at 6:51 pm
                                                    BrianP
                                                    Participant

                                                      Emily,

                                                      That sounds confusing to me as well.  I agree with the other comments and would call the oncologist immediately for clarification and as Art said, if new mets are true push for Keytruda.  A 1 or 2 mm difference to me is not alerting.  Sometimes the clarity of the images are very difficult to discern a 1 or 2 mm difference and as you mentioned Ipi can cause inflamation which makes mets appear larger.  I had a thickening at the suture line on one of my scans a while back which turned out to be nothing.  The reports of the new nodules to me is concerning and very puzzling the oncologist wouldn't mention these.  Good on you for being proactive and advocating for your husband.  Hang in there!

                                                      Brian

                                                      • December 12, 2014 at 6:51 pm
                                                      BrianP
                                                      Participant

                                                        Emily,

                                                        That sounds confusing to me as well.  I agree with the other comments and would call the oncologist immediately for clarification and as Art said, if new mets are true push for Keytruda.  A 1 or 2 mm difference to me is not alerting.  Sometimes the clarity of the images are very difficult to discern a 1 or 2 mm difference and as you mentioned Ipi can cause inflamation which makes mets appear larger.  I had a thickening at the suture line on one of my scans a while back which turned out to be nothing.  The reports of the new nodules to me is concerning and very puzzling the oncologist wouldn't mention these.  Good on you for being proactive and advocating for your husband.  Hang in there!

                                                        Brian

                                                        • December 13, 2014 at 3:14 pm
                                                        ed williams
                                                        Participant

                                                          Hi Emily, I had a Ct scan report put in my file last summer that was actually a mistake and ended up being from someone else. My Oncologist knows that I read my file on treatment days and gave me the heads up. They had me with Liver mets growing from a previous  scan with a date that I never had and I also have never had liver mets. Hospitals do make mistakes so I hope this could be an answer for your report. Wishing you and your family the best!!!! Ed

                                                          • December 13, 2014 at 3:14 pm
                                                          ed williams
                                                          Participant

                                                            Hi Emily, I had a Ct scan report put in my file last summer that was actually a mistake and ended up being from someone else. My Oncologist knows that I read my file on treatment days and gave me the heads up. They had me with Liver mets growing from a previous  scan with a date that I never had and I also have never had liver mets. Hospitals do make mistakes so I hope this could be an answer for your report. Wishing you and your family the best!!!! Ed

                                                            • December 13, 2014 at 3:14 pm
                                                            ed williams
                                                            Participant

                                                              Hi Emily, I had a Ct scan report put in my file last summer that was actually a mistake and ended up being from someone else. My Oncologist knows that I read my file on treatment days and gave me the heads up. They had me with Liver mets growing from a previous  scan with a date that I never had and I also have never had liver mets. Hospitals do make mistakes so I hope this could be an answer for your report. Wishing you and your family the best!!!! Ed

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