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maria d

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      maria d
      Participant

        Hi,

        My name is Maria, and I was diagnosed in November with Rectal Melanoma (Mucosal). My first Surgeon wanted to remove the rectum, and perform a colostomy. I was so upset, and frightened. My friend and I researched and found Dr Bamboat at Hackensack University Medical Center. He was able to save the rectum and get good margins.  During a recent pevic MRI, a new growth has been detected, and I am scheduled for a biopsy. I don't know what that will bring. At least they may start tretment, now. I have had so many problems with my Insurance company, due to it being an EPO, they will not allow out of state coverage. It took them 51 days to decline allowing me to go to MSKCC, in NYC for a second opinion. They are treating this as Cutaneous, even though we keep telling them its Mucosal.  Anybody else encountering these issues? 

        Thanks 

        Maria D

        maria d
        Participant

          Hi,

          My name is Maria, and I was diagnosed in November with Rectal Melanoma (Mucosal). My first Surgeon wanted to remove the rectum, and perform a colostomy. I was so upset, and frightened. My friend and I researched and found Dr Bamboat at Hackensack University Medical Center. He was able to save the rectum and get good margins.  During a recent pevic MRI, a new growth has been detected, and I am scheduled for a biopsy. I don't know what that will bring. At least they may start tretment, now. I have had so many problems with my Insurance company, due to it being an EPO, they will not allow out of state coverage. It took them 51 days to decline allowing me to go to MSKCC, in NYC for a second opinion. They are treating this as Cutaneous, even though we keep telling them its Mucosal.  Anybody else encountering these issues? 

          Thanks 

          Maria D

          maria d
          Participant

            Hi,

            My name is Maria, and I was diagnosed in November with Rectal Melanoma (Mucosal). My first Surgeon wanted to remove the rectum, and perform a colostomy. I was so upset, and frightened. My friend and I researched and found Dr Bamboat at Hackensack University Medical Center. He was able to save the rectum and get good margins.  During a recent pevic MRI, a new growth has been detected, and I am scheduled for a biopsy. I don't know what that will bring. At least they may start tretment, now. I have had so many problems with my Insurance company, due to it being an EPO, they will not allow out of state coverage. It took them 51 days to decline allowing me to go to MSKCC, in NYC for a second opinion. They are treating this as Cutaneous, even though we keep telling them its Mucosal.  Anybody else encountering these issues? 

            Thanks 

            Maria D

            maria d
            Participant

              Hi

              I am new to the site, so I'm unsure of how this works.  But, I have MUCOSAL RECTAL MELANOMA.

              My Tumor was removed in January, with good margins. No Radiation or Chemo, yet. 

              The Onc., tried to enroll me in a Clinical Trial, but i was rejected. They haven't proven Metastatic, yet.

              so far, all I've been doing is watch and wait.  Now, I have a growth on my ovary and sacrum area. Its only

              March… 3 months later.  Now they want to verify if its a secondary site.  Also, cKIT and BRAF Negative.

              What can I expect? Anybody else with this?

              Thanks

              Maria D

              maria d
              Participant

                Hi

                I am new to the site, so I'm unsure of how this works.  But, I have MUCOSAL RECTAL MELANOMA.

                My Tumor was removed in January, with good margins. No Radiation or Chemo, yet. 

                The Onc., tried to enroll me in a Clinical Trial, but i was rejected. They haven't proven Metastatic, yet.

                so far, all I've been doing is watch and wait.  Now, I have a growth on my ovary and sacrum area. Its only

                March… 3 months later.  Now they want to verify if its a secondary site.  Also, cKIT and BRAF Negative.

                What can I expect? Anybody else with this?

                Thanks

                Maria D

                maria d
                Participant

                  Hi

                  I am new to the site, so I'm unsure of how this works.  But, I have MUCOSAL RECTAL MELANOMA.

                  My Tumor was removed in January, with good margins. No Radiation or Chemo, yet. 

                  The Onc., tried to enroll me in a Clinical Trial, but i was rejected. They haven't proven Metastatic, yet.

                  so far, all I've been doing is watch and wait.  Now, I have a growth on my ovary and sacrum area. Its only

                  March… 3 months later.  Now they want to verify if its a secondary site.  Also, cKIT and BRAF Negative.

                  What can I expect? Anybody else with this?

                  Thanks

                  Maria D

                  maria d
                  Participant

                    Hi Jerry

                    I am new to the site, so excuse me if I don't follow Protocol, as I on't know all the rules.

                    I have Mucosal Rectal Melanoma.  The Tumor was resected January 2, and I am BRAF and CKIT Mutation free.

                    The Oncologists tried to enroll me in a clinical trial, but I was declined – NOT METASTATIC, yet.

                    So, they are jut monitoring me, for now.  What can you tell me abou this dreadful disease?

                    Thanks

                    Maria D

                     

                    maria d
                    Participant

                      Hi Jerry

                      I am new to the site, so excuse me if I don't follow Protocol, as I on't know all the rules.

                      I have Mucosal Rectal Melanoma.  The Tumor was resected January 2, and I am BRAF and CKIT Mutation free.

                      The Oncologists tried to enroll me in a clinical trial, but I was declined – NOT METASTATIC, yet.

                      So, they are jut monitoring me, for now.  What can you tell me abou this dreadful disease?

                      Thanks

                      Maria D

                       

                      maria d
                      Participant

                        Hi Jerry

                        I am new to the site, so excuse me if I don't follow Protocol, as I on't know all the rules.

                        I have Mucosal Rectal Melanoma.  The Tumor was resected January 2, and I am BRAF and CKIT Mutation free.

                        The Oncologists tried to enroll me in a clinical trial, but I was declined – NOT METASTATIC, yet.

                        So, they are jut monitoring me, for now.  What can you tell me abou this dreadful disease?

                        Thanks

                        Maria D

                         

                    Viewing 2 reply threads
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