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Looking for answers for my mom

Forums General Melanoma Community Looking for answers for my mom

  • Post
    shopgirl
    Participant

      Hi!

      My mom was told yesterday she had Metastatic Melanoma after have a tumor in her lymph node removed.  The did a head to toe exam and found absolutely NO sign of the primary melanoma.

      Can someone tell me what this means?

      Also, on the site I read the "stages" of melanoma.  Since this is NOT the primary and was found in her lymph node does this automatically mean it's Stage 4 and does that change her prognosis?

      Hi!

      My mom was told yesterday she had Metastatic Melanoma after have a tumor in her lymph node removed.  The did a head to toe exam and found absolutely NO sign of the primary melanoma.

      Can someone tell me what this means?

      Also, on the site I read the "stages" of melanoma.  Since this is NOT the primary and was found in her lymph node does this automatically mean it's Stage 4 and does that change her prognosis?

      She's going in today for the PET and CT scans, but won't get her MRI until next week after the staples from the tumor surgery are out.

      Thank you ahead of time for your answers and support!

      -Shopgirl

    Viewing 14 reply threads
    • Replies
        MichaelFL
        Participant

          At times a primary will not be able to be found. Perhaps it has regressed back into the body, or it was what is called amelanotic melanoma. This appears as a lesion that has little or no color (non-pigmented) or may appear red, pink or scarlike-white. It has an asymmetrical shape, and an irregular faintly pigmented border.

          Concerning the staging, she is stage three (III) at this point. If it was only found in one node, it will be stage three A (IIIA) Interferon is a option at stage three.

          Hopefully the scans will not show any further spread of the disease. If that is the case and it has gone to perhaps an organ, she will be stage four (IV).

          Where is she being seen? Is it a melanoma center?

          MichaelFL
          Participant

            At times a primary will not be able to be found. Perhaps it has regressed back into the body, or it was what is called amelanotic melanoma. This appears as a lesion that has little or no color (non-pigmented) or may appear red, pink or scarlike-white. It has an asymmetrical shape, and an irregular faintly pigmented border.

            Concerning the staging, she is stage three (III) at this point. If it was only found in one node, it will be stage three A (IIIA) Interferon is a option at stage three.

            Hopefully the scans will not show any further spread of the disease. If that is the case and it has gone to perhaps an organ, she will be stage four (IV).

            Where is she being seen? Is it a melanoma center?

              shopgirl
              Participant

                Thank you for the information.  She is being seen by a melanoma oncologist.  He came very highly recommended by both the PCP and the ENT who did the surgery to remove the tumor this week.

                shopgirl
                Participant

                  Thank you for the information.  She is being seen by a melanoma oncologist.  He came very highly recommended by both the PCP and the ENT who did the surgery to remove the tumor this week.

                  shopgirl
                  Participant

                    Thank you for the information.  She is being seen by a melanoma oncologist.  He came very highly recommended by both the PCP and the ENT who did the surgery to remove the tumor this week.

                  MichaelFL
                  Participant

                    At times a primary will not be able to be found. Perhaps it has regressed back into the body, or it was what is called amelanotic melanoma. This appears as a lesion that has little or no color (non-pigmented) or may appear red, pink or scarlike-white. It has an asymmetrical shape, and an irregular faintly pigmented border.

                    Concerning the staging, she is stage three (III) at this point. If it was only found in one node, it will be stage three A (IIIA) Interferon is a option at stage three.

                    Hopefully the scans will not show any further spread of the disease. If that is the case and it has gone to perhaps an organ, she will be stage four (IV).

                    Where is she being seen? Is it a melanoma center?

                    lunchlady
                    Participant

                      So sorry to hear about your Mom's diagnosis.  It can be so scarey when you first get that information.  Your Mom would probable be considered stage 3 at this point.  There is a lot of information on the internet regarding melamoma, staging and treatments.  I feel the best information can be found on sites such as MD Anderson Cancer Center, NIH, etc because they deal with this stuff al the time.  Make sure your Mom is being treated by a melanoma specialist and not just a general oncologist. 

                      I will be praying for a clear scan for your Mom.  

                      lunchlady
                      Participant

                        So sorry to hear about your Mom's diagnosis.  It can be so scarey when you first get that information.  Your Mom would probable be considered stage 3 at this point.  There is a lot of information on the internet regarding melamoma, staging and treatments.  I feel the best information can be found on sites such as MD Anderson Cancer Center, NIH, etc because they deal with this stuff al the time.  Make sure your Mom is being treated by a melanoma specialist and not just a general oncologist. 

                        I will be praying for a clear scan for your Mom.  

                        lunchlady
                        Participant

                          So sorry to hear about your Mom's diagnosis.  It can be so scarey when you first get that information.  Your Mom would probable be considered stage 3 at this point.  There is a lot of information on the internet regarding melamoma, staging and treatments.  I feel the best information can be found on sites such as MD Anderson Cancer Center, NIH, etc because they deal with this stuff al the time.  Make sure your Mom is being treated by a melanoma specialist and not just a general oncologist. 

                          I will be praying for a clear scan for your Mom.  

                          lunchlady
                          Participant

                            So sorry to hear about your Mom's diagnosis.  It can be so scarey when you first get that information.  Your Mom would probable be considered stage 3 at this point.  There is a lot of information on the internet regarding melamoma, staging and treatments.  I feel the best information can be found on sites such as MD Anderson Cancer Center, NIH, etc because they deal with this stuff al the time.  Make sure your Mom is being treated by a melanoma specialist and not just a general oncologist. 

                            I will be praying for a clear scan for your Mom.  

                            lunchlady
                            Participant

                              So sorry to hear about your Mom's diagnosis.  It can be so scarey when you first get that information.  Your Mom would probable be considered stage 3 at this point.  There is a lot of information on the internet regarding melamoma, staging and treatments.  I feel the best information can be found on sites such as MD Anderson Cancer Center, NIH, etc because they deal with this stuff al the time.  Make sure your Mom is being treated by a melanoma specialist and not just a general oncologist. 

                              I will be praying for a clear scan for your Mom.  

                              lunchlady
                              Participant

                                So sorry to hear about your Mom's diagnosis.  It can be so scarey when you first get that information.  Your Mom would probable be considered stage 3 at this point.  There is a lot of information on the internet regarding melamoma, staging and treatments.  I feel the best information can be found on sites such as MD Anderson Cancer Center, NIH, etc because they deal with this stuff al the time.  Make sure your Mom is being treated by a melanoma specialist and not just a general oncologist. 

                                I will be praying for a clear scan for your Mom.  

                                  shopgirl
                                  Participant

                                    Thank you for the support and prayers, as well as the information.  She is being treated by a melanoma specialist.  He wants all of her work ups first which we've already got underway.  He came VERY highly recommended.

                                    shopgirl
                                    Participant

                                      Thank you for the support and prayers, as well as the information.  She is being treated by a melanoma specialist.  He wants all of her work ups first which we've already got underway.  He came VERY highly recommended.

                                      shopgirl
                                      Participant

                                        Thank you for the support and prayers, as well as the information.  She is being treated by a melanoma specialist.  He wants all of her work ups first which we've already got underway.  He came VERY highly recommended.

                                      audgator
                                      Participant

                                        I also had an unknown primary. You can read my profile. It starts out discouraging but I am moving toward a happy ending. In my case 5 is a charm. Best wishes!   Dan

                                        audgator
                                        Participant

                                          I also had an unknown primary. You can read my profile. It starts out discouraging but I am moving toward a happy ending. In my case 5 is a charm. Best wishes!   Dan

                                          audgator
                                          Participant

                                            I also had an unknown primary. You can read my profile. It starts out discouraging but I am moving toward a happy ending. In my case 5 is a charm. Best wishes!   Dan

                                            Linny
                                            Participant

                                              Your mom has melanoma with an unknown primary, which I also have. According to the statistics I've read, only a small percentage of us have this type of melanoma. If her scans are clean then she will be Stage III. If the scans show that it has spread to other organs, then it becomes Stage IV.

                                              I am Stage III and had one node test positive for melanoma. You can read about the details of my surgeries and treatment on my profile.

                                              What was explained to me about this form of melanoma is that probably originated on the skin but your body's immune system fought it off. Its most likely site would have been closest to the affected lymph node. The fact that the body's immune system was fighting it, is a VERY good thing. Melanoma does not respond well to chemotherapy drugs, which kill cancer cells. It's treated with immunotherpay drugs, which get the immune system to kill the cancer. According to some studies those with unknown primaries are better than those with known primaries due to a "strong endogenous immune response".

                                              I pray that your mom's scans are clean.

                                              Linny
                                              Participant

                                                Your mom has melanoma with an unknown primary, which I also have. According to the statistics I've read, only a small percentage of us have this type of melanoma. If her scans are clean then she will be Stage III. If the scans show that it has spread to other organs, then it becomes Stage IV.

                                                I am Stage III and had one node test positive for melanoma. You can read about the details of my surgeries and treatment on my profile.

                                                What was explained to me about this form of melanoma is that probably originated on the skin but your body's immune system fought it off. Its most likely site would have been closest to the affected lymph node. The fact that the body's immune system was fighting it, is a VERY good thing. Melanoma does not respond well to chemotherapy drugs, which kill cancer cells. It's treated with immunotherpay drugs, which get the immune system to kill the cancer. According to some studies those with unknown primaries are better than those with known primaries due to a "strong endogenous immune response".

                                                I pray that your mom's scans are clean.

                                                Linny
                                                Participant

                                                  Your mom has melanoma with an unknown primary, which I also have. According to the statistics I've read, only a small percentage of us have this type of melanoma. If her scans are clean then she will be Stage III. If the scans show that it has spread to other organs, then it becomes Stage IV.

                                                  I am Stage III and had one node test positive for melanoma. You can read about the details of my surgeries and treatment on my profile.

                                                  What was explained to me about this form of melanoma is that probably originated on the skin but your body's immune system fought it off. Its most likely site would have been closest to the affected lymph node. The fact that the body's immune system was fighting it, is a VERY good thing. Melanoma does not respond well to chemotherapy drugs, which kill cancer cells. It's treated with immunotherpay drugs, which get the immune system to kill the cancer. According to some studies those with unknown primaries are better than those with known primaries due to a "strong endogenous immune response".

                                                  I pray that your mom's scans are clean.

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