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AvaL
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AvaL

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      • September 2, 2017 at 5:55 am
      AvaL
      Participant

        Love this… thank you!

        • August 26, 2017 at 3:43 pm
        AvaL
        Participant

          Thanks so much for posting. Hubby stage 3 and always good to hear others further out… thanks you! Out of curiosity how deep was your primary? X

          • August 25, 2017 at 10:03 am
          AvaL
          Participant

            Hi Jim chief, This time in between initial biopsy and diagnosis is shitty for sure. Sorry you're going through this. 

            My hubby was told his was melanoma befor biopsy and the derm was correct. But his did look exactly like the typical melanoma. I really don't think they can tell for sure how deep it is though. I have a feeling they thought hubby's was deep, we both did too going from the look of it. Turned out to be 2.3 so deep enough but not the >4mm. We were actually please derm gave us heads up, it I see where Jenn is coming from with the potential for unnecessary worry. 

            I guess what I'm saying is even the most experienced derma can't tell how deep it is without the pathology. The stats at mo are mostly outdated as there's tons of advances since 2011 for stage 4 with people living longer and some going to no evidence of disease. 

            You'll get through this initial awful part and once u have answers and a plan based on pathology you will feel much better. Keep busy if u can before then x

            • April 14, 2017 at 9:17 pm
            AvaL
            Participant

              Absolutely 100% normal. You are doing fantastically for functioning enough to go in to work I think. I wasn't the one diagnosed but my husband was (3a) and I felt a range of emotions. Overwhelmed with emotion at points. We're now post dissection and 4 months post diagnosis upgrade and feeling so much better. The anxiety continues with scans and the worry never leaves completely. But it's no longer the all consuming thing it was. I am hoping like it has for us, that the intensity of how you're feeling right now lessens with time and as trust builds again. This diagnosis completely shatters your beliefs I think and it takes a while to recover from that. But you will. Take it easy and look after yourself x

              • April 3, 2017 at 7:26 pm
              AvaL
              Participant

                Thanks for lol this information. The video is really interesting. It has given me a lot of info of exactly what BRAF mutation is, didn't realise I had no idea how the drugs actually worked on it and why. This guy (expect he's a top expert) in the video is great too, somehow he manages to turn a pretty damn scary topic into one with quite a positive message. 

                • February 20, 2017 at 10:54 am
                AvaL
                Participant

                  Thanks for these replies. There was a node mapped in the sentinel node mapping just where my hip bone is. So I'm assuming that it was sentinel. The surgeon didn't take it tho for testing as apparently SNLB doesn't usually take deep lymph nodes. His reasoning was that it tends to spread to surface nodes before deeper ones. I had a positive in my groin and CLND to that area. Guess it still makes me nervous knowing that  the hip one (I assume pelvis) remains and was untested. It also was closer (distance wise). 

                  • February 20, 2017 at 10:54 am
                  AvaL
                  Participant

                    Thanks for these replies. There was a node mapped in the sentinel node mapping just where my hip bone is. So I'm assuming that it was sentinel. The surgeon didn't take it tho for testing as apparently SNLB doesn't usually take deep lymph nodes. His reasoning was that it tends to spread to surface nodes before deeper ones. I had a positive in my groin and CLND to that area. Guess it still makes me nervous knowing that  the hip one (I assume pelvis) remains and was untested. It also was closer (distance wise). 

                    • February 8, 2017 at 9:27 pm
                    AvaL
                    Participant

                      Laura I am keeping absolutely everything possible crossed for you that it is something completely harmless. What a wait for you though…. awful! Thinking of you lots x

                      • February 8, 2017 at 9:27 pm
                      AvaL
                      Participant

                        Laura I am keeping absolutely everything possible crossed for you that it is something completely harmless. What a wait for you though…. awful! Thinking of you lots x

                        • March 19, 2017 at 7:13 am
                        AvaL
                        Participant

                          Here's the only bit of info I could find. http://www.mdedge.com/edermatologynews/article/131388/melanoma/new-ajcc-guidance-brings-melanoma-staging-changes 

                          theres a number of changes across the stages by the looks of it. Including extra sub stage for 3c and changes to stage 1 so that mitotic rate is no longer considered 

                          • February 17, 2017 at 8:17 pm
                          AvaL
                          Participant

                            Thanks so much for replying. That's what I thought. There's no patch or spot. ive showed hubby your response and he's feeling much better smiley

                            • February 17, 2017 at 8:17 pm
                            AvaL
                            Participant

                              Thanks so much for replying. That's what I thought. There's no patch or spot. ive showed hubby your response and he's feeling much better smiley

                              • February 8, 2017 at 9:57 pm
                              AvaL
                              Participant

                                Yes, this disease is just hideous isn't it and I totally agree – one of he biggest parts of it is managing the anxiety that goes along with it and not cracking up!… and I'm only the wife! Paul (my hubby) is stage 3a also, diagnosed in August. You sound like you are managing with all this really well, despite being naturally nervous waiting (god waiting is terrible!). To pull yourself out of depression is no mean feat! I'll be thinking of you tomo X

                                • February 8, 2017 at 9:57 pm
                                AvaL
                                Participant

                                  Yes, this disease is just hideous isn't it and I totally agree – one of he biggest parts of it is managing the anxiety that goes along with it and not cracking up!… and I'm only the wife! Paul (my hubby) is stage 3a also, diagnosed in August. You sound like you are managing with all this really well, despite being naturally nervous waiting (god waiting is terrible!). To pull yourself out of depression is no mean feat! I'll be thinking of you tomo X

                                  • February 8, 2017 at 9:57 pm
                                  AvaL
                                  Participant

                                    Yes, this disease is just hideous isn't it and I totally agree – one of he biggest parts of it is managing the anxiety that goes along with it and not cracking up!… and I'm only the wife! Paul (my hubby) is stage 3a also, diagnosed in August. You sound like you are managing with all this really well, despite being naturally nervous waiting (god waiting is terrible!). To pull yourself out of depression is no mean feat! I'll be thinking of you tomo X

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