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Brain tumor ruptured

Forums General Melanoma Community Brain tumor ruptured

  • Post
    Braid
    Participant
      Hello, my wife had a large melanoma tumor removed from her upper thigh in September, 2013. After much debate we decided to go nivolumab lumab with high dose interferon treatment. She had a full body CT scan immediately prior to going on interferon and it was deemed clear mid December. On December 29th, I came home and found her passed out on the floor. Turns out she had a large blood clot in her brain from another melanoma tumor that ruptured. They successfully removed the tumor and she is currently in rehab to regain speech as well as the ability to walk again. This has been absolutely devastating. I’m confused how she would be cleared just 2 weeks prior of an undetected tumor that ruptured only 2 weeks later. Does anyone know if a melanoma brain tumor can go undetected in a CT scan and grow in only 2 weeks time?

      Any input would be greatly appreciated. I’m currently searching options for putting her on Yeroy or one of the latest trials, nivolumab or lambrolizumab.

    Viewing 2 reply threads
    • Replies
        Braid
        Participant
          This forum won’t allow me to edit my post so I have a correction. She was initially placed on interferon, not nivolumab or lambrolizumab.
          Braid
          Participant
            This forum won’t allow me to edit my post so I have a correction. She was initially placed on interferon, not nivolumab or lambrolizumab.
              jmmm
              Participant

                MRI is the best way to see anything in the brain.  I think that most melanoma specialists will do one at diagnosis (to get a base line) and every 6 months, just to keep an eye on things.  Was it a large tumor?  If it was big, a CT might have shown it, but if it was smaller, a CT probably would have missed it.  I'm glad your wife is recovering…brain tumors are so scary and very unpredictable.

                jmmm
                Participant

                  MRI is the best way to see anything in the brain.  I think that most melanoma specialists will do one at diagnosis (to get a base line) and every 6 months, just to keep an eye on things.  Was it a large tumor?  If it was big, a CT might have shown it, but if it was smaller, a CT probably would have missed it.  I'm glad your wife is recovering…brain tumors are so scary and very unpredictable.

                  Braid
                  Participant
                    Thanks for your reply. I’m not aware of the tumor size yet. I’m just immensely frustrated the doctors said she was in the clear and then she experiences a stroke from an undetected tumor. I guess now we know she should recieve more MRI scans.
                    Braid
                    Participant
                      Thanks for your reply. I’m not aware of the tumor size yet. I’m just immensely frustrated the doctors said she was in the clear and then she experiences a stroke from an undetected tumor. I guess now we know she should recieve more MRI scans.
                      arthurjedi007
                      Participant

                        Wow. So sorry to hear this. Yes the MRI is the best scan for the brain. The PET/CT where the CT is for the GI system seems the best for everything else. Or at least that's what the DRs have said to me. My first CT only showed 1 tumor but a week later the PET showed more. So yes the CT can easily miss the smaller tumors. Whereas the PET seems to find them except in the brain. The MRI is the best for the brain.

                        arthurjedi007
                        Participant

                          Wow. So sorry to hear this. Yes the MRI is the best scan for the brain. The PET/CT where the CT is for the GI system seems the best for everything else. Or at least that's what the DRs have said to me. My first CT only showed 1 tumor but a week later the PET showed more. So yes the CT can easily miss the smaller tumors. Whereas the PET seems to find them except in the brain. The MRI is the best for the brain.

                          Braid
                          Participant
                            Thanks for your reply arthurjedi.
                            Braid
                            Participant
                              Thanks for your reply arthurjedi.
                              killmel
                              Participant

                                Yes, an MRI is the best way to detect tumors in the brain.

                                If it was my loved one, I would DEMAND answers why this was not detected.

                                I would request that the doctor & radiologist show you the December scan to determine if the tumor was or was NOTon the CT scan & the Doctors just MISSED it.

                                If it is the doctors missed the tumor, I would hold them liaable somehow & at least make a FORMAL complaint of NEGLIGENCE with the appropriate agencies ( IE. Medical Board in your state where you live.)

                                Just my 2 cents for what it is worth

                                killmel
                                Participant

                                  Yes, an MRI is the best way to detect tumors in the brain.

                                  If it was my loved one, I would DEMAND answers why this was not detected.

                                  I would request that the doctor & radiologist show you the December scan to determine if the tumor was or was NOTon the CT scan & the Doctors just MISSED it.

                                  If it is the doctors missed the tumor, I would hold them liaable somehow & at least make a FORMAL complaint of NEGLIGENCE with the appropriate agencies ( IE. Medical Board in your state where you live.)

                                  Just my 2 cents for what it is worth

                                  Braid
                                  Participant
                                    Thank you for your response. Yes, the fact this went undetected makes me more and more upset. I will demand serious answers.
                                    Braid
                                    Participant
                                      Thank you for your response. Yes, the fact this went undetected makes me more and more upset. I will demand serious answers.
                                      MeNDave
                                      Participant

                                        Chances are they did not scan the brain.  When my husband was diagnosed at stage 3 he was told they would not scan the brain unless he had symptoms.  Most doctors assume that it will spread to the lungs/liver first, and given the cost of brain MRI's (which would have been done to detect the cancer) they only do that if there are symptoms.  We all know that melanoma doesn't play by the rules though ๐Ÿ™  Sorry you have to go through this.

                                        MeNDave
                                        Participant

                                          Chances are they did not scan the brain.  When my husband was diagnosed at stage 3 he was told they would not scan the brain unless he had symptoms.  Most doctors assume that it will spread to the lungs/liver first, and given the cost of brain MRI's (which would have been done to detect the cancer) they only do that if there are symptoms.  We all know that melanoma doesn't play by the rules though ๐Ÿ™  Sorry you have to go through this.

                                          MeNDave
                                          Participant

                                            Chances are they did not scan the brain.  When my husband was diagnosed at stage 3 he was told they would not scan the brain unless he had symptoms.  Most doctors assume that it will spread to the lungs/liver first, and given the cost of brain MRI's (which would have been done to detect the cancer) they only do that if there are symptoms.  We all know that melanoma doesn't play by the rules though ๐Ÿ™  Sorry you have to go through this.

                                            Braid
                                            Participant
                                              Thank you for your response. Yes, the fact this went undetected makes me more and more upset. I will demand serious answers.
                                              killmel
                                              Participant

                                                Yes, an MRI is the best way to detect tumors in the brain.

                                                If it was my loved one, I would DEMAND answers why this was not detected.

                                                I would request that the doctor & radiologist show you the December scan to determine if the tumor was or was NOTon the CT scan & the Doctors just MISSED it.

                                                If it is the doctors missed the tumor, I would hold them liaable somehow & at least make a FORMAL complaint of NEGLIGENCE with the appropriate agencies ( IE. Medical Board in your state where you live.)

                                                Just my 2 cents for what it is worth

                                                Braid
                                                Participant
                                                  Thanks for your reply arthurjedi.
                                                  arthurjedi007
                                                  Participant

                                                    Wow. So sorry to hear this. Yes the MRI is the best scan for the brain. The PET/CT where the CT is for the GI system seems the best for everything else. Or at least that's what the DRs have said to me. My first CT only showed 1 tumor but a week later the PET showed more. So yes the CT can easily miss the smaller tumors. Whereas the PET seems to find them except in the brain. The MRI is the best for the brain.

                                                    Braid
                                                    Participant
                                                      Thanks for your reply. I’m not aware of the tumor size yet. I’m just immensely frustrated the doctors said she was in the clear and then she experiences a stroke from an undetected tumor. I guess now we know she should recieve more MRI scans.
                                                      jmmm
                                                      Participant

                                                        MRI is the best way to see anything in the brain.  I think that most melanoma specialists will do one at diagnosis (to get a base line) and every 6 months, just to keep an eye on things.  Was it a large tumor?  If it was big, a CT might have shown it, but if it was smaller, a CT probably would have missed it.  I'm glad your wife is recovering…brain tumors are so scary and very unpredictable.

                                                      Braid
                                                      Participant
                                                        This forum won’t allow me to edit my post so I have a correction. She was initially placed on interferon, not nivolumab or lambrolizumab.
                                                    Viewing 2 reply threads
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