Just diagnosed
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Just diagnosed

› Forums › General Melanoma Community › Just diagnosed

  • Post
    • April 12, 2016 at 9:38 pm
    Tamlin
    Participant

    Just got diagnosed today. After 10 years of being NED….. It has returned. I had a ct scan today which thankfully didn't show anything outwith the lymph nodes, however the fine needle biopsy in my right groin proved to be melanoma and I don't mind saying I am scared witless. I am going for a pre op assessment tomorrow morning and the surgery next Wednesday for lymph dissection.

    im scared of the op, I'm more scared of the diagnosis and still haven't really got my head round it. I haven't shed a tear, it just all feels like it's happening to someone else X 

Viewing 17 reply threads
  • Replies
      • April 12, 2016 at 11:07 pm
      jennunicorn
      Participant

      I am so sorry that the biopsy came back positive. We are here for you and just know that you are not alone in all these feelings you're having about this diagnosis. STUPID MELANOMA! 

      Wishing you all the best from this point forward, 

      • April 12, 2016 at 11:07 pm
      jennunicorn
      Participant

      I am so sorry that the biopsy came back positive. We are here for you and just know that you are not alone in all these feelings you're having about this diagnosis. STUPID MELANOMA! 

      Wishing you all the best from this point forward, 

        • April 17, 2016 at 2:16 am
        Tamlin
        Participant

        Thanks Jenn xx

        • April 17, 2016 at 2:16 am
        Tamlin
        Participant

        Thanks Jenn xx

        • April 17, 2016 at 2:16 am
        Tamlin
        Participant

        Thanks Jenn xx

      • April 12, 2016 at 11:07 pm
      jennunicorn
      Participant

      I am so sorry that the biopsy came back positive. We are here for you and just know that you are not alone in all these feelings you're having about this diagnosis. STUPID MELANOMA! 

      Wishing you all the best from this point forward, 

      • April 13, 2016 at 3:48 am
      Allie
      Participant

      Hi Tamlin.  That is kind of like my story, NED for 10 years.  In December they found 2 melanomas that I had removed.  Now 3 months later I have two more that they are not removing, but I am starting treatment.  You are not alone and I am believing you will beat it again.  Best of luck to you.

      • April 13, 2016 at 3:48 am
      Allie
      Participant

      Hi Tamlin.  That is kind of like my story, NED for 10 years.  In December they found 2 melanomas that I had removed.  Now 3 months later I have two more that they are not removing, but I am starting treatment.  You are not alone and I am believing you will beat it again.  Best of luck to you.

        • April 17, 2016 at 2:17 am
        Tamlin
        Participant

        And the same to you, thank you Allie xx 

        • April 17, 2016 at 2:17 am
        Tamlin
        Participant

        And the same to you, thank you Allie xx 

        • April 17, 2016 at 2:17 am
        Tamlin
        Participant

        And the same to you, thank you Allie xx 

      • April 13, 2016 at 3:48 am
      Allie
      Participant

      Hi Tamlin.  That is kind of like my story, NED for 10 years.  In December they found 2 melanomas that I had removed.  Now 3 months later I have two more that they are not removing, but I am starting treatment.  You are not alone and I am believing you will beat it again.  Best of luck to you.

      • April 13, 2016 at 5:54 am
      MoiraM
      Participant

      My advice is to take full advantage of the pre op assessment to ask all your questions about the op. That is the immediate hurdle. Make sure you ask all those questions about how you should look after yourself afterwards to ensure a good recovery.

      There are many more and many more effective treatments for melanoma than there were 10 years ago. If this op makes you NED for another 10 years then there may even be a 'cure'!

      • April 13, 2016 at 5:54 am
      MoiraM
      Participant

      My advice is to take full advantage of the pre op assessment to ask all your questions about the op. That is the immediate hurdle. Make sure you ask all those questions about how you should look after yourself afterwards to ensure a good recovery.

      There are many more and many more effective treatments for melanoma than there were 10 years ago. If this op makes you NED for another 10 years then there may even be a 'cure'!

        • April 17, 2016 at 2:18 am
        Tamlin
        Participant

        Thanks Moira, best wishes xx

        • April 17, 2016 at 2:18 am
        Tamlin
        Participant

        Thanks Moira, best wishes xx

        • April 17, 2016 at 2:18 am
        Tamlin
        Participant

        Thanks Moira, best wishes xx

      • April 13, 2016 at 5:54 am
      MoiraM
      Participant

      My advice is to take full advantage of the pre op assessment to ask all your questions about the op. That is the immediate hurdle. Make sure you ask all those questions about how you should look after yourself afterwards to ensure a good recovery.

      There are many more and many more effective treatments for melanoma than there were 10 years ago. If this op makes you NED for another 10 years then there may even be a 'cure'!

      • April 13, 2016 at 10:14 am
      Patrisa
      Participant

      Dear Tamlin,

      I really know how you feel, we thought our father was out of the woods after almost 3 years beeing NED (stage IIIa), until November 2015 when we found out it was back…. We thought that was the end for him, he immediately said he didn t want chemo and we didn t know there were any other options available….

      I can tell you that I was paralized with fear (i love my dad to death), had to take antidepressants and didn t funcition at all for a month, lost hair, lost weight and almost lost hope…. BUT, everything needs time to settle in and nothing is as bad as it first looks.. Especially now, knowing that so many options are available and that progress is beeing made every day…..

      So, his path is Keytruda (he is stage IV), we have seen his large melanoma on his back shrinking and are hopefull until his first scan that everything is shrinking in his lungs too…..

      Be positive and believe that new treatments will help you, cause THEY WILL i m sure…

      Good luck!

       

      Patrisa

       

      • April 13, 2016 at 10:14 am
      Patrisa
      Participant

      Dear Tamlin,

      I really know how you feel, we thought our father was out of the woods after almost 3 years beeing NED (stage IIIa), until November 2015 when we found out it was back…. We thought that was the end for him, he immediately said he didn t want chemo and we didn t know there were any other options available….

      I can tell you that I was paralized with fear (i love my dad to death), had to take antidepressants and didn t funcition at all for a month, lost hair, lost weight and almost lost hope…. BUT, everything needs time to settle in and nothing is as bad as it first looks.. Especially now, knowing that so many options are available and that progress is beeing made every day…..

      So, his path is Keytruda (he is stage IV), we have seen his large melanoma on his back shrinking and are hopefull until his first scan that everything is shrinking in his lungs too…..

      Be positive and believe that new treatments will help you, cause THEY WILL i m sure…

      Good luck!

       

      Patrisa

       

        • April 17, 2016 at 2:21 am
        Tamlin
        Participant

        Thanks Patrisa, keep strong, I'll keep your dad in my prayers xx 

        • April 17, 2016 at 2:21 am
        Tamlin
        Participant

        Thanks Patrisa, keep strong, I'll keep your dad in my prayers xx 

        • April 17, 2016 at 2:21 am
        Tamlin
        Participant

        Thanks Patrisa, keep strong, I'll keep your dad in my prayers xx 

      • April 13, 2016 at 10:14 am
      Patrisa
      Participant

      Dear Tamlin,

      I really know how you feel, we thought our father was out of the woods after almost 3 years beeing NED (stage IIIa), until November 2015 when we found out it was back…. We thought that was the end for him, he immediately said he didn t want chemo and we didn t know there were any other options available….

      I can tell you that I was paralized with fear (i love my dad to death), had to take antidepressants and didn t funcition at all for a month, lost hair, lost weight and almost lost hope…. BUT, everything needs time to settle in and nothing is as bad as it first looks.. Especially now, knowing that so many options are available and that progress is beeing made every day…..

      So, his path is Keytruda (he is stage IV), we have seen his large melanoma on his back shrinking and are hopefull until his first scan that everything is shrinking in his lungs too…..

      Be positive and believe that new treatments will help you, cause THEY WILL i m sure…

      Good luck!

       

      Patrisa

       

      • April 13, 2016 at 8:23 pm
      vickiaa0529
      Participant

      I just had a lymph node dissection on my right groin. My inginuial node swelled up after almost 1 1/2 years of clean ultrasound scans. My Pet Scan was clean and I just found out that out of the 20 nodes removed only the inginual was positive for melanoma. I have an appointment with an oncologist on April 20th to find out what the next step will be. It is very scary but if I can do it you can. Honestly I think I will be scared for the rest of my life but I am a chicken you know what. The surgery and recovery is not a fun time but better than melanoma

       

       

       

      • April 13, 2016 at 8:23 pm
      vickiaa0529
      Participant

      I just had a lymph node dissection on my right groin. My inginuial node swelled up after almost 1 1/2 years of clean ultrasound scans. My Pet Scan was clean and I just found out that out of the 20 nodes removed only the inginual was positive for melanoma. I have an appointment with an oncologist on April 20th to find out what the next step will be. It is very scary but if I can do it you can. Honestly I think I will be scared for the rest of my life but I am a chicken you know what. The surgery and recovery is not a fun time but better than melanoma

       

       

       

        • April 17, 2016 at 2:24 am
        Tamlin
        Participant

        Thanks Vicki, I go for my op on the same day. Good luck with your appointment. How long was your recovery? Xx

        • April 17, 2016 at 2:24 am
        Tamlin
        Participant

        Thanks Vicki, I go for my op on the same day. Good luck with your appointment. How long was your recovery? Xx

        • April 17, 2016 at 2:24 am
        Tamlin
        Participant

        Thanks Vicki, I go for my op on the same day. Good luck with your appointment. How long was your recovery? Xx

      • April 13, 2016 at 8:23 pm
      vickiaa0529
      Participant

      I just had a lymph node dissection on my right groin. My inginuial node swelled up after almost 1 1/2 years of clean ultrasound scans. My Pet Scan was clean and I just found out that out of the 20 nodes removed only the inginual was positive for melanoma. I have an appointment with an oncologist on April 20th to find out what the next step will be. It is very scary but if I can do it you can. Honestly I think I will be scared for the rest of my life but I am a chicken you know what. The surgery and recovery is not a fun time but better than melanoma

       

       

       

      • April 14, 2016 at 1:35 pm
      Bradley75
      Participant

      We have a rather similar story.  I was 100% in your shoes last May.  I was NED for 8 years when I discovered a lump under my right arm.  My lymph node dissection was a difficult thing, but like others have said, it was way better than cancer.  The worst part for me was the draintube I had in for 5 weeks.  Once that thing was gone, the rest was easy.  I am dealing with some mild lymphedema and my range of motion is still a work in progress.  One thing that really helped me is an awesome PT/Lymphedema specialist.  She has been a gift from God for me throughout this process.  One other question I wish I had asked was if there was any extranodal extension present after my dissection.  I am not going to point fingers on this.  Just make sure you ask them.  It matters.

      I have had 4 PET/CT scans over the last 11 months.  I can tell you that your clear scan is HUGE!  I remeber the trauma that was my 1st scan after the melanoma came back.  Hang in there.  I am happy to answer any questions you may have and am here for support if you need it.  Keep your head up and know that you are not alone in this fight.  If you don't mind, I would like to add you to a prayer list i have for others going through what we are going through? 

      Brad- stage IIIb

        • April 14, 2016 at 3:25 pm
        vickiaa0529
        Participant

        You can add me to your prayer list and I will add you to mine.

        What is an extra nodal extension. It sounds like something I should have asked

         

        • April 14, 2016 at 8:50 pm
        Bradley75
        Participant

        Thank you.  The power of prayer is awesome.

        Extra nodal extension is when there is evidence of melanoma cells in the tissue outside the lymph node that tested positive.  I always visualized it like the lymph node couldn't hold the cancer anymore so it leaked out.  Once it was determined that I had that in my case, they recommended radiation therapy to try to reduce the chance of regional recurrence. 

        • April 14, 2016 at 8:50 pm
        Bradley75
        Participant

        Thank you.  The power of prayer is awesome.

        Extra nodal extension is when there is evidence of melanoma cells in the tissue outside the lymph node that tested positive.  I always visualized it like the lymph node couldn't hold the cancer anymore so it leaked out.  Once it was determined that I had that in my case, they recommended radiation therapy to try to reduce the chance of regional recurrence. 

        • April 15, 2016 at 5:05 pm
        vickiaa0529
        Participant

        Thanks for that. I think they tested my tissue but I am going to check

        I can't wait to get this drain out. Did you have any problem with Lymphedema?

        Did you do the radiation?

         

        • April 15, 2016 at 5:05 pm
        vickiaa0529
        Participant

        Thanks for that. I think they tested my tissue but I am going to check

        I can't wait to get this drain out. Did you have any problem with Lymphedema?

        Did you do the radiation?

         

        • April 15, 2016 at 5:05 pm
        vickiaa0529
        Participant

        Thanks for that. I think they tested my tissue but I am going to check

        I can't wait to get this drain out. Did you have any problem with Lymphedema?

        Did you do the radiation?

         

        • April 14, 2016 at 8:50 pm
        Bradley75
        Participant

        Thank you.  The power of prayer is awesome.

        Extra nodal extension is when there is evidence of melanoma cells in the tissue outside the lymph node that tested positive.  I always visualized it like the lymph node couldn't hold the cancer anymore so it leaked out.  Once it was determined that I had that in my case, they recommended radiation therapy to try to reduce the chance of regional recurrence. 

        • April 14, 2016 at 3:25 pm
        vickiaa0529
        Participant

        You can add me to your prayer list and I will add you to mine.

        What is an extra nodal extension. It sounds like something I should have asked

         

        • April 14, 2016 at 3:25 pm
        vickiaa0529
        Participant

        You can add me to your prayer list and I will add you to mine.

        What is an extra nodal extension. It sounds like something I should have asked

         

        • April 17, 2016 at 2:28 am
        Tamlin
        Participant

        Thank you so much Brad, I would be honoured to be on your prayer list. You will be in my prayers also. I'm keeping strong for my family, my husband isn't handling it too well. He's like a rabbit caught in the headlights right now xx 

        • April 17, 2016 at 2:28 am
        Tamlin
        Participant

        Thank you so much Brad, I would be honoured to be on your prayer list. You will be in my prayers also. I'm keeping strong for my family, my husband isn't handling it too well. He's like a rabbit caught in the headlights right now xx 

        • April 17, 2016 at 2:28 am
        Tamlin
        Participant

        Thank you so much Brad, I would be honoured to be on your prayer list. You will be in my prayers also. I'm keeping strong for my family, my husband isn't handling it too well. He's like a rabbit caught in the headlights right now xx 

      • April 14, 2016 at 1:35 pm
      Bradley75
      Participant

      We have a rather similar story.  I was 100% in your shoes last May.  I was NED for 8 years when I discovered a lump under my right arm.  My lymph node dissection was a difficult thing, but like others have said, it was way better than cancer.  The worst part for me was the draintube I had in for 5 weeks.  Once that thing was gone, the rest was easy.  I am dealing with some mild lymphedema and my range of motion is still a work in progress.  One thing that really helped me is an awesome PT/Lymphedema specialist.  She has been a gift from God for me throughout this process.  One other question I wish I had asked was if there was any extranodal extension present after my dissection.  I am not going to point fingers on this.  Just make sure you ask them.  It matters.

      I have had 4 PET/CT scans over the last 11 months.  I can tell you that your clear scan is HUGE!  I remeber the trauma that was my 1st scan after the melanoma came back.  Hang in there.  I am happy to answer any questions you may have and am here for support if you need it.  Keep your head up and know that you are not alone in this fight.  If you don't mind, I would like to add you to a prayer list i have for others going through what we are going through? 

      Brad- stage IIIb

      • April 14, 2016 at 1:35 pm
      Bradley75
      Participant

      We have a rather similar story.  I was 100% in your shoes last May.  I was NED for 8 years when I discovered a lump under my right arm.  My lymph node dissection was a difficult thing, but like others have said, it was way better than cancer.  The worst part for me was the draintube I had in for 5 weeks.  Once that thing was gone, the rest was easy.  I am dealing with some mild lymphedema and my range of motion is still a work in progress.  One thing that really helped me is an awesome PT/Lymphedema specialist.  She has been a gift from God for me throughout this process.  One other question I wish I had asked was if there was any extranodal extension present after my dissection.  I am not going to point fingers on this.  Just make sure you ask them.  It matters.

      I have had 4 PET/CT scans over the last 11 months.  I can tell you that your clear scan is HUGE!  I remeber the trauma that was my 1st scan after the melanoma came back.  Hang in there.  I am happy to answer any questions you may have and am here for support if you need it.  Keep your head up and know that you are not alone in this fight.  If you don't mind, I would like to add you to a prayer list i have for others going through what we are going through? 

      Brad- stage IIIb

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