Probable recurrence..need advice!
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Probable recurrence..need advice!

› Forums › General Melanoma Community › Probable recurrence..need advice!

  • Post
    • August 18, 2012 at 8:10 pm
    JenJen12
    Participant

    Hi all,

    Hi all,

    My name is Jen and i used to come on this site all the time. I still read posts on a weekly basis but unfortunately i now need help and advice.i was diagnosed stage 3a  from primary on left foot by toes 2.5 mm. I had 4 cells in my sentinel node  on left thigh and did a year of interferon which i handled just fine.  I just had my 3 year NED anniversary with a PET/CT that followed 2 weeks later. Unfortunately my onc called yesterday and said there was a hot spot on the right side of my body that had a high suv of 4.9. It is near my groin, bladder and colon. So this would move me to stage 4 🙁 They couldnt pin point it though because it did not show up on ct. It is very likely melanoma because of high suv. No other spots showed up in body. I had an MRI yesterday around 5 pm to further investigate. I have not heard back from my oncologist which i'm sure is bad. I leave for Europe tomorrow for two weeks. I was going to cancel but i am going to go still and deal with all of this when i get back.

    What do you think my next step would be? I don't have the Braf mutation either. Surgery adn then IL-2 ? Yervoy. I handled interferon really easily. I am a 29 year old female that was diagnosed at 26. Any advice on what my next steps should be are greatly appreciated!

    Thanks so much,

    Jenjen 3a now probably 4

Viewing 5 reply threads
  • Replies
      • August 18, 2012 at 8:24 pm
      Becky
      Participant

      Hey Jen

       

      No real advice, but just wanted to know I have been thinking about you lots (saw on Facebook). I'm glad you are going on your trip, but I hope you get some answers before you go.

       

      Hang in there!!!

      Becky

        • August 18, 2012 at 8:46 pm
        JenJen12
        Participant

        Hi Becky,

        My oncologist just called. He and the radiologist went over my mri all morning and saw nothing that correlated with pet scan hot spot. so they went over pet/ct again and found nothing on ct again. They think that it is now my ovary since its a week after my period and i'm ovulating i guess. They are 90 % sure it was false positive but we are going to rescan sooner than later just in case. Thanks for the message. I hate how one stupid scan change your entire world so fast….

        Jen

        • August 18, 2012 at 8:46 pm
        JenJen12
        Participant

        Hi Becky,

        My oncologist just called. He and the radiologist went over my mri all morning and saw nothing that correlated with pet scan hot spot. so they went over pet/ct again and found nothing on ct again. They think that it is now my ovary since its a week after my period and i'm ovulating i guess. They are 90 % sure it was false positive but we are going to rescan sooner than later just in case. Thanks for the message. I hate how one stupid scan change your entire world so fast….

        Jen

        • August 18, 2012 at 9:09 pm
        lhaley
        Participant

        I also remember you Jen!  Glad to hear that there was good news.  Enjoy your vacation!

        Linda

        • August 18, 2012 at 9:09 pm
        lhaley
        Participant

        I also remember you Jen!  Glad to hear that there was good news.  Enjoy your vacation!

        Linda

        • August 18, 2012 at 9:09 pm
        lhaley
        Participant

        I also remember you Jen!  Glad to hear that there was good news.  Enjoy your vacation!

        Linda

        • August 18, 2012 at 8:46 pm
        JenJen12
        Participant

        Hi Becky,

        My oncologist just called. He and the radiologist went over my mri all morning and saw nothing that correlated with pet scan hot spot. so they went over pet/ct again and found nothing on ct again. They think that it is now my ovary since its a week after my period and i'm ovulating i guess. They are 90 % sure it was false positive but we are going to rescan sooner than later just in case. Thanks for the message. I hate how one stupid scan change your entire world so fast….

        Jen

        • August 18, 2012 at 8:46 pm
        JenJen12
        Participant

        Hi Becky,

        My oncologist just called. He and the radiologist went over my mri all morning and saw nothing that correlated with pet scan hot spot. so they went over pet/ct again and found nothing on ct again. They think that it is now my ovary since its a week after my period and i'm ovulating i guess. They are 90 % sure it was false positive but we are going to rescan sooner than later just in case. Thanks for the message. I hate how one stupid scan change your entire world so fast….

        Jen

        • August 18, 2012 at 8:46 pm
        JenJen12
        Participant

        Hi Becky,

        My oncologist just called. He and the radiologist went over my mri all morning and saw nothing that correlated with pet scan hot spot. so they went over pet/ct again and found nothing on ct again. They think that it is now my ovary since its a week after my period and i'm ovulating i guess. They are 90 % sure it was false positive but we are going to rescan sooner than later just in case. Thanks for the message. I hate how one stupid scan change your entire world so fast….

        Jen

        • August 18, 2012 at 9:26 pm
        Becky
        Participant

        That is great news! I know PET scans are notorious for flase positives. So…go to Europe, have fun and don't stress!!

        • August 18, 2012 at 9:26 pm
        Becky
        Participant

        That is great news! I know PET scans are notorious for flase positives. So…go to Europe, have fun and don't stress!!

        • August 18, 2012 at 9:26 pm
        Becky
        Participant

        That is great news! I know PET scans are notorious for flase positives. So…go to Europe, have fun and don't stress!!

        • August 18, 2012 at 8:46 pm
        JenJen12
        Participant

        Hi Becky,

        My oncologist just called. He and the radiologist went over my mri all morning and saw nothing that correlated with pet scan hot spot. so they went over pet/ct again and found nothing on ct again. They think that it is now my ovary since its a week after my period and i'm ovulating i guess. They are 90 % sure it was false positive but we are going to rescan sooner than later just in case. Thanks for the message. I hate how one stupid scan change your entire world so fast….

        Jen

      • August 18, 2012 at 8:24 pm
      Becky
      Participant

      Hey Jen

       

      No real advice, but just wanted to know I have been thinking about you lots (saw on Facebook). I'm glad you are going on your trip, but I hope you get some answers before you go.

       

      Hang in there!!!

      Becky

      • August 18, 2012 at 8:24 pm
      Becky
      Participant

      Hey Jen

       

      No real advice, but just wanted to know I have been thinking about you lots (saw on Facebook). I'm glad you are going on your trip, but I hope you get some answers before you go.

       

      Hang in there!!!

      Becky

      • August 19, 2012 at 12:56 am
      Harry in Fair Oaks
      Participant

      I really would not worry.  First of all, 4.9 SUV is not that high – it may just be an infection somewhere.  For comparison, I had a lesion  (an actual melanoma recurrence) that was more than 12.  Also, PET results are very unreliable on anything less than 10 mm in size.  Since you say they could not correlate it with CT, I would disregard it.  Perhaps a rescan in 6 mos. is warranted.  Just enjoy life!

      Best wishes,

      Harry

      • August 19, 2012 at 12:56 am
      Harry in Fair Oaks
      Participant

      I really would not worry.  First of all, 4.9 SUV is not that high – it may just be an infection somewhere.  For comparison, I had a lesion  (an actual melanoma recurrence) that was more than 12.  Also, PET results are very unreliable on anything less than 10 mm in size.  Since you say they could not correlate it with CT, I would disregard it.  Perhaps a rescan in 6 mos. is warranted.  Just enjoy life!

      Best wishes,

      Harry

      • August 19, 2012 at 12:56 am
      Harry in Fair Oaks
      Participant

      I really would not worry.  First of all, 4.9 SUV is not that high – it may just be an infection somewhere.  For comparison, I had a lesion  (an actual melanoma recurrence) that was more than 12.  Also, PET results are very unreliable on anything less than 10 mm in size.  Since you say they could not correlate it with CT, I would disregard it.  Perhaps a rescan in 6 mos. is warranted.  Just enjoy life!

      Best wishes,

      Harry

Viewing 5 reply threads
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