The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Time between initial diagnosis and metastasis

Forums Ocular Melanoma Community Time between initial diagnosis and metastasis

  • Post
    Heather
    Participant

      Hello, my name is Heather and I was diagnosed with ocular melanoma in 1995 at the age of 22. I have been very fortunate and have had no metastasis thus far. On my last CT of the chest two 3mm pulmonary nodules were found.  Upon re-evaluation of my scans the one was present on the previous years scan and showed no change….a good thing. I go next month for a follow up CT .  I am hopeful that this will turn out to be nothing, but as you all know it is scary. Until recently, I thought I was safe from metastasis since it had been so long(naive I guess).

      Hello, my name is Heather and I was diagnosed with ocular melanoma in 1995 at the age of 22. I have been very fortunate and have had no metastasis thus far. On my last CT of the chest two 3mm pulmonary nodules were found.  Upon re-evaluation of my scans the one was present on the previous years scan and showed no change….a good thing. I go next month for a follow up CT .  I am hopeful that this will turn out to be nothing, but as you all know it is scary. Until recently, I thought I was safe from metastasis since it had been so long(naive I guess).  After this most recent CT's results, I began to research and came across some people with very long gaps between initial diagnosis and metastasis. Just wondering if this is common? Thanks! Heather

    Viewing 8 reply threads
    • Replies
        tommonoli
        Participant

          Hi Heather,   were you ever told the size of primary tumor? Location?  Radiation, enucleation?  I am curious due to the length of time since your diagnosis, thank you and take care.

          tommonoli
          Participant

            Hi Heather,   were you ever told the size of primary tumor? Location?  Radiation, enucleation?  I am curious due to the length of time since your diagnosis, thank you and take care.

              Heather
              Participant

                I do not recall the size, but it was not too big. I did have the radiation plaque followed up with laser therapy. It was choroidal occular melanoma. 

                Heather
                Participant

                  I do not recall the size, but it was not too big. I did have the radiation plaque followed up with laser therapy. It was choroidal occular melanoma. 

                  Heather
                  Participant

                    I do not recall the size, but it was not too big. I did have the radiation plaque followed up with laser therapy. It was choroidal occular melanoma. 

                  tommonoli
                  Participant

                    Hi Heather,   were you ever told the size of primary tumor? Location?  Radiation, enucleation?  I am curious due to the length of time since your diagnosis, thank you and take care.

                    lak
                    Participant

                      Hi Heather

                       

                      The first peak of metastases is at 2.5 years post diagnosis

                      then 7 years

                      then 17 years

                      then a few after 20

                       

                      It is notorious for lying dormant for a long time. As each cohort comes the numbers involved are smaller

                      about 25-30 %  get mets 2.5 years from diagnosis

                      another 20 % or so at 7  then a few 17 and even fewer later.

                       

                      These are mean tiimes so some may have mets at diagnosis and some a 3 years etc

                       

                      The outcome is meant to be much better for those who get it in their lungs first

                      lak
                      Participant

                        Hi Heather

                         

                        The first peak of metastases is at 2.5 years post diagnosis

                        then 7 years

                        then 17 years

                        then a few after 20

                         

                        It is notorious for lying dormant for a long time. As each cohort comes the numbers involved are smaller

                        about 25-30 %  get mets 2.5 years from diagnosis

                        another 20 % or so at 7  then a few 17 and even fewer later.

                         

                        These are mean tiimes so some may have mets at diagnosis and some a 3 years etc

                         

                        The outcome is meant to be much better for those who get it in their lungs first

                          Heather
                          Participant
                            Thank you for the information. Hoping not to fall into one of those statistics.
                            :-) Heather
                            Heather
                            Participant
                              Thank you for the information. Hoping not to fall into one of those statistics.
                              :-) Heather
                              Heather
                              Participant
                                Thank you for the information. Hoping not to fall into one of those statistics.
                                :-) Heather
                                tommonoli
                                Participant

                                  Amen

                                  tommonoli
                                  Participant

                                    Amen

                                    tommonoli
                                    Participant

                                      Amen

                                    lak
                                    Participant

                                      Hi Heather

                                       

                                      The first peak of metastases is at 2.5 years post diagnosis

                                      then 7 years

                                      then 17 years

                                      then a few after 20

                                       

                                      It is notorious for lying dormant for a long time. As each cohort comes the numbers involved are smaller

                                      about 25-30 %  get mets 2.5 years from diagnosis

                                      another 20 % or so at 7  then a few 17 and even fewer later.

                                       

                                      These are mean tiimes so some may have mets at diagnosis and some a 3 years etc

                                       

                                      The outcome is meant to be much better for those who get it in their lungs first

                                      edamaser
                                      Participant

                                        Hi Heather,

                                        NEVER stop looking for mets.  My OM metastasized 22 years after initial onset in eye.

                                        Also, I had nodules in my lungs for ages, which did not grow.  Then later I got the real thing, but only after liver mets.

                                        Anyway, I'm still here and feeling OK.

                                        I wish you much good luck, and continued NED status.

                                        Esther

                                        edamaser
                                        Participant

                                          Hi Heather,

                                          NEVER stop looking for mets.  My OM metastasized 22 years after initial onset in eye.

                                          Also, I had nodules in my lungs for ages, which did not grow.  Then later I got the real thing, but only after liver mets.

                                          Anyway, I'm still here and feeling OK.

                                          I wish you much good luck, and continued NED status.

                                          Esther

                                          edamaser
                                          Participant

                                            Hi Heather,

                                            NEVER stop looking for mets.  My OM metastasized 22 years after initial onset in eye.

                                            Also, I had nodules in my lungs for ages, which did not grow.  Then later I got the real thing, but only after liver mets.

                                            Anyway, I'm still here and feeling OK.

                                            I wish you much good luck, and continued NED status.

                                            Esther

                                        Viewing 8 reply threads
                                        • You must be logged in to reply to this topic.
                                        About the MRF Patient Forum

                                        The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                        The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.