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Jennab0525

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      Jennab0525
      Participant

        Hello DHVA!

        Have you ever been diagnosed with Cystic Fibrosis or diagnosed as a carrier?? Many people think that CF is only a childhood disease BUT it actually is becoming more and more common for adults to be diagnosed with late onset mild CF. I know because my brother and I have both recently been diagnosed in our 40’s!

        what you are describing is a very common CT finding for CF patients and represents a condition called Bronchiastasis. Not deadly but it can cause upper respiratory issues. The tree in bud nodules are actually small mucus plugs or impactions on the end of the bronchial tubes. 

        Anyway, just a thought!!

        Jennab0525
        Participant

          Hello!

          I'm in MN as well and I see Dr. King at MN Oncology. His office is at Unity Hospital in Fridley. He is amazing! I'm stage 3b and currently on watch and wait. Scans and skin checks every 4 months. I am currently 1 year NED (pending my next CT on Jan 13th which I'm praying will be clear as well).

          Dr King has 20 plus years in Melanoma. He is by far the most compassionate and knowledgeable doctor I've ever met. Even gives all his patients his personal cell number in case you ever need him!

          I agree with Janner to wait until you are staged after your SNB and WLE to schedule with an oncologist.

          Jenna

          Jennab0525
          Participant

            Hello!

            I'm in MN as well and I see Dr. King at MN Oncology. His office is at Unity Hospital in Fridley. He is amazing! I'm stage 3b and currently on watch and wait. Scans and skin checks every 4 months. I am currently 1 year NED (pending my next CT on Jan 13th which I'm praying will be clear as well).

            Dr King has 20 plus years in Melanoma. He is by far the most compassionate and knowledgeable doctor I've ever met. Even gives all his patients his personal cell number in case you ever need him!

            I agree with Janner to wait until you are staged after your SNB and WLE to schedule with an oncologist.

            Jenna

            Jennab0525
            Participant

              Hello!

              I'm in MN as well and I see Dr. King at MN Oncology. His office is at Unity Hospital in Fridley. He is amazing! I'm stage 3b and currently on watch and wait. Scans and skin checks every 4 months. I am currently 1 year NED (pending my next CT on Jan 13th which I'm praying will be clear as well).

              Dr King has 20 plus years in Melanoma. He is by far the most compassionate and knowledgeable doctor I've ever met. Even gives all his patients his personal cell number in case you ever need him!

              I agree with Janner to wait until you are staged after your SNB and WLE to schedule with an oncologist.

              Jenna

              Jennab0525
              Participant

                Hello!!!

                i just wanted to reply that you and I have almost the identical situation!! I had two isolated tumor cells found in my sentinel node. Mine were very microscopic and had not began to cluster or mat. Unfortunately my oncologist (two oncs actually as I got a second opinion) told me that although they were only microscopic that any trace of melanoma in your node elevates you to a stage 3. However he said that research does show in breast cancer patients that if isolated tumor cells are found in the SLNB they consider the node to be negative and do not elevate the stage. Unfortunately they don't have the same amount of research in melanoma patients at this time so for now they still stage us at a 3. He said that there are a few studies out there right now that are trying to determine the significance of isolated tumor cells in Melanoma patients but those results won't be in for a few years. So here we are in the "limbo" stage. 

                Both oncologists I saw gave me the option of immunotherapy. One insisted on the CLND and the other said no way. My second oncologist said that both the risks of immunotherapy and the CLND far outweighed any benefits for a patient like me so I chose the "watch and wait" approach. I get CT scans every 3 months (although now I just graduated to every 4 months) and skin checks every 3 months. I am very comfortable with that decision and things have been going great so far! Just had my one year cancer free scan! Yeah me!

                My oncologist feels my chance of recurrence is about 15-20%. I feel the general populations chance of getting cancer is about the same (if not higher) but unlike everyone else, I'm watched VERY closely so if I do progress we will catch it early. I can live with that.

                The bottom line is whatever you decide will be your personal decision and what you feel is best for you! I know this stage of the game is the worst part but trust me it does get better!!

                Jenna

                Jennab0525
                Participant

                  Hello!!!

                  i just wanted to reply that you and I have almost the identical situation!! I had two isolated tumor cells found in my sentinel node. Mine were very microscopic and had not began to cluster or mat. Unfortunately my oncologist (two oncs actually as I got a second opinion) told me that although they were only microscopic that any trace of melanoma in your node elevates you to a stage 3. However he said that research does show in breast cancer patients that if isolated tumor cells are found in the SLNB they consider the node to be negative and do not elevate the stage. Unfortunately they don't have the same amount of research in melanoma patients at this time so for now they still stage us at a 3. He said that there are a few studies out there right now that are trying to determine the significance of isolated tumor cells in Melanoma patients but those results won't be in for a few years. So here we are in the "limbo" stage. 

                  Both oncologists I saw gave me the option of immunotherapy. One insisted on the CLND and the other said no way. My second oncologist said that both the risks of immunotherapy and the CLND far outweighed any benefits for a patient like me so I chose the "watch and wait" approach. I get CT scans every 3 months (although now I just graduated to every 4 months) and skin checks every 3 months. I am very comfortable with that decision and things have been going great so far! Just had my one year cancer free scan! Yeah me!

                  My oncologist feels my chance of recurrence is about 15-20%. I feel the general populations chance of getting cancer is about the same (if not higher) but unlike everyone else, I'm watched VERY closely so if I do progress we will catch it early. I can live with that.

                  The bottom line is whatever you decide will be your personal decision and what you feel is best for you! I know this stage of the game is the worst part but trust me it does get better!!

                  Jenna

                  Jennab0525
                  Participant

                    Hello!!!

                    i just wanted to reply that you and I have almost the identical situation!! I had two isolated tumor cells found in my sentinel node. Mine were very microscopic and had not began to cluster or mat. Unfortunately my oncologist (two oncs actually as I got a second opinion) told me that although they were only microscopic that any trace of melanoma in your node elevates you to a stage 3. However he said that research does show in breast cancer patients that if isolated tumor cells are found in the SLNB they consider the node to be negative and do not elevate the stage. Unfortunately they don't have the same amount of research in melanoma patients at this time so for now they still stage us at a 3. He said that there are a few studies out there right now that are trying to determine the significance of isolated tumor cells in Melanoma patients but those results won't be in for a few years. So here we are in the "limbo" stage. 

                    Both oncologists I saw gave me the option of immunotherapy. One insisted on the CLND and the other said no way. My second oncologist said that both the risks of immunotherapy and the CLND far outweighed any benefits for a patient like me so I chose the "watch and wait" approach. I get CT scans every 3 months (although now I just graduated to every 4 months) and skin checks every 3 months. I am very comfortable with that decision and things have been going great so far! Just had my one year cancer free scan! Yeah me!

                    My oncologist feels my chance of recurrence is about 15-20%. I feel the general populations chance of getting cancer is about the same (if not higher) but unlike everyone else, I'm watched VERY closely so if I do progress we will catch it early. I can live with that.

                    The bottom line is whatever you decide will be your personal decision and what you feel is best for you! I know this stage of the game is the worst part but trust me it does get better!!

                    Jenna

                    Jennab0525
                    Participant

                      Hi Lizz! I too am so very sorry you had to join our "club". It's certainly a scary, anxiety filled roller coaster. Your post brought back so many memories of my fear when I was first diagnosed. Tomorrow I go in for my one year CT scan. I'm scared but not as badly as I was in the beginning so as odd as it seems to you now, know that it does get easier to cope.

                      I too was initially diagnosed stage 2b pending the results of the SLNB. I'm a little surprised your surgeon made the SNLB seem optional as that was not the case with me. In the beginning things moved so damn fast it is mind boggling! I went from initial biopsy to surgery for the WLE and SNLB in a one week time span!! It was insane. My Nodular tumor was 3.5 mm depth and all doctors I spoke with were very concerned but still optimistic that my nodes would be clear. Unfortunately, I had two isolated tumor cells in one node (two nodes were removed). This elevated me to a stage 3b which I have remained ever since with no treatment (only watch and wait which includes scans and skin checks every 3 months). Knock on wood it stays the same after my scan tomorrow!!!

                      I agree with the others that a melanoma oncologist is a MUST! Also please know you can always get a second, third or even fourth opinion if needed!! I got a second opinion after my positive SNLB and I'm so happy I did. I can't stress enough the importance of having doctors you trust 100%! It makes the journey so much easier! 

                      Take a deep breath and take it one day at a time. We are all here for you. This board is amazing and you will not find a more kind and knowledgeable group. 

                      Please stay in touch. All my best!!

                      Jenna

                      Jennab0525
                      Participant

                        Hi Lizz! I too am so very sorry you had to join our "club". It's certainly a scary, anxiety filled roller coaster. Your post brought back so many memories of my fear when I was first diagnosed. Tomorrow I go in for my one year CT scan. I'm scared but not as badly as I was in the beginning so as odd as it seems to you now, know that it does get easier to cope.

                        I too was initially diagnosed stage 2b pending the results of the SLNB. I'm a little surprised your surgeon made the SNLB seem optional as that was not the case with me. In the beginning things moved so damn fast it is mind boggling! I went from initial biopsy to surgery for the WLE and SNLB in a one week time span!! It was insane. My Nodular tumor was 3.5 mm depth and all doctors I spoke with were very concerned but still optimistic that my nodes would be clear. Unfortunately, I had two isolated tumor cells in one node (two nodes were removed). This elevated me to a stage 3b which I have remained ever since with no treatment (only watch and wait which includes scans and skin checks every 3 months). Knock on wood it stays the same after my scan tomorrow!!!

                        I agree with the others that a melanoma oncologist is a MUST! Also please know you can always get a second, third or even fourth opinion if needed!! I got a second opinion after my positive SNLB and I'm so happy I did. I can't stress enough the importance of having doctors you trust 100%! It makes the journey so much easier! 

                        Take a deep breath and take it one day at a time. We are all here for you. This board is amazing and you will not find a more kind and knowledgeable group. 

                        Please stay in touch. All my best!!

                        Jenna

                        Jennab0525
                        Participant

                          Hi Lizz! I too am so very sorry you had to join our "club". It's certainly a scary, anxiety filled roller coaster. Your post brought back so many memories of my fear when I was first diagnosed. Tomorrow I go in for my one year CT scan. I'm scared but not as badly as I was in the beginning so as odd as it seems to you now, know that it does get easier to cope.

                          I too was initially diagnosed stage 2b pending the results of the SLNB. I'm a little surprised your surgeon made the SNLB seem optional as that was not the case with me. In the beginning things moved so damn fast it is mind boggling! I went from initial biopsy to surgery for the WLE and SNLB in a one week time span!! It was insane. My Nodular tumor was 3.5 mm depth and all doctors I spoke with were very concerned but still optimistic that my nodes would be clear. Unfortunately, I had two isolated tumor cells in one node (two nodes were removed). This elevated me to a stage 3b which I have remained ever since with no treatment (only watch and wait which includes scans and skin checks every 3 months). Knock on wood it stays the same after my scan tomorrow!!!

                          I agree with the others that a melanoma oncologist is a MUST! Also please know you can always get a second, third or even fourth opinion if needed!! I got a second opinion after my positive SNLB and I'm so happy I did. I can't stress enough the importance of having doctors you trust 100%! It makes the journey so much easier! 

                          Take a deep breath and take it one day at a time. We are all here for you. This board is amazing and you will not find a more kind and knowledgeable group. 

                          Please stay in touch. All my best!!

                          Jenna

                          Jennab0525
                          Participant

                            Hi Lee,

                            I'm not doing any treatment right now (currently on watch and wait) which makes the pain even more unusual as well as unnerving!

                            Glad your pain subsided! Here's to hoping mine does too!

                            Jenna

                            Jennab0525
                            Participant

                              Hi Lee,

                              I'm not doing any treatment right now (currently on watch and wait) which makes the pain even more unusual as well as unnerving!

                              Glad your pain subsided! Here's to hoping mine does too!

                              Jenna

                              Jennab0525
                              Participant

                                Hi Lee,

                                I'm not doing any treatment right now (currently on watch and wait) which makes the pain even more unusual as well as unnerving!

                                Glad your pain subsided! Here's to hoping mine does too!

                                Jenna

                                Jennab0525
                                Participant

                                  Hi Josh!

                                  Thank you so much for your response! My issues seem so minuscule when I know what you've been dealing with! I think about you often and read all your posts. I am always praying for you!

                                  I will stay diligent and try not to worry! You do the same!! I hope your pain subsides. Maybe it's just a result of your surgery in May? My understanding of tumors is they don't cause pain until they get quite large so I'm sure your pain is not related to the melanoma. You may not be NED now but I know you will be soon! I have faith!

                                  Thanks again for your positive post! Fingers crossed you feel better soon! Please continue to keep us all posted on your journey.

                                  Jenna

                                  Jennab0525
                                  Participant

                                    Hi Josh!

                                    Thank you so much for your response! My issues seem so minuscule when I know what you've been dealing with! I think about you often and read all your posts. I am always praying for you!

                                    I will stay diligent and try not to worry! You do the same!! I hope your pain subsides. Maybe it's just a result of your surgery in May? My understanding of tumors is they don't cause pain until they get quite large so I'm sure your pain is not related to the melanoma. You may not be NED now but I know you will be soon! I have faith!

                                    Thanks again for your positive post! Fingers crossed you feel better soon! Please continue to keep us all posted on your journey.

                                    Jenna

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