UPDATE!!
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UPDATE!!

› Forums › General Melanoma Community › UPDATE!!

  • Post
    • July 2, 2011 at 5:12 am
    DeniseK
    Participant

    Hi All,

    Hi All,

    I just went to my surgeons yesterday for a check up and discussion.  He went to a tumor board on Monday and discussed my case with others.  They all agreed that my next step should be a Brain MRI and PET scan.  I'm extremely high risk of reoccurence and because of the size of tumor 14mm Breslow depth and clarks level V the cancer could have spread to other areas via the blood vessels.  He said with a tumor this size it doesn't necessarily take the lymphatic channel.  He's also referring me to the Northern California Melanoma Center in San Francisco for a consultation on what kind of treatments I should have.  This will also depend on the MRI and PET scan.  So another week of waiting!!  How long does it take to get the results of these procedures? 

    OH YEAH!  I asked for xanax and I got some.  I don't really notice the effects and today was the first day taking one.  If my headaches stop then they were definately due to stress. 

    Denise

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  • Replies
      • July 2, 2011 at 7:58 am
      JerryfromFauq
      Participant

      MRI and CT scan results should be avaailable within 24 hours (Possibly the same day)  I get mine in about two hours.)  Pet scn results usually take about 5 workiing days.  I have had one that the results were to my Doctor within 36 hours.

       

      Get copies of your scans on CD's.  You should be able to walk out of the scan center nwith them the same day.

      • July 2, 2011 at 7:58 am
      JerryfromFauq
      Participant

      MRI and CT scan results should be avaailable within 24 hours (Possibly the same day)  I get mine in about two hours.)  Pet scn results usually take about 5 workiing days.  I have had one that the results were to my Doctor within 36 hours.

       

      Get copies of your scans on CD's.  You should be able to walk out of the scan center nwith them the same day.

      • July 2, 2011 at 12:17 pm
      Teodora
      Guest

      Hi Denise,

      You are quite correct.Unfortunately once you get melanoma, you have it for life!There is no cure.There is always a chance that  few bad cells/stray cells/ lurk underneath and circulate within your blood system.They can stay dormant for a long time  or attach to an organ and start a new grow quite fast.The spread can be arrested/controlled by the doctors/or not, depending on how aggressive the melanoma type  is and depending on each individual.

      I've had my primary removed/internal melanoma-golf size ball/ and clear margins/nodes just to have a local reoccurence 10 months later.

      I wish there was a cure, but the reality we all have to face is that  melanoma is volatile and unpredictable disease that can come back any time.Key word here -damage control.

      Try to take good care of yourself and maintain  PMA  so you are psychologicaly well prepared to deal with it.After the initial panic , despair and  dark thoughts,  I find myself in a quite a good spot/mentally/ lately.You learn to deal with it/live with it,subconsiously expecting the worst but  hoping for the best possible outcome.

      Take care and Good Luck with your scans.

      Teodora

      • July 2, 2011 at 12:17 pm
      Teodora
      Guest

      Hi Denise,

      You are quite correct.Unfortunately once you get melanoma, you have it for life!There is no cure.There is always a chance that  few bad cells/stray cells/ lurk underneath and circulate within your blood system.They can stay dormant for a long time  or attach to an organ and start a new grow quite fast.The spread can be arrested/controlled by the doctors/or not, depending on how aggressive the melanoma type  is and depending on each individual.

      I've had my primary removed/internal melanoma-golf size ball/ and clear margins/nodes just to have a local reoccurence 10 months later.

      I wish there was a cure, but the reality we all have to face is that  melanoma is volatile and unpredictable disease that can come back any time.Key word here -damage control.

      Try to take good care of yourself and maintain  PMA  so you are psychologicaly well prepared to deal with it.After the initial panic , despair and  dark thoughts,  I find myself in a quite a good spot/mentally/ lately.You learn to deal with it/live with it,subconsiously expecting the worst but  hoping for the best possible outcome.

      Take care and Good Luck with your scans.

      Teodora

        • July 2, 2011 at 12:31 pm
        Lisa13
        Participant

        I'm glad you're getting a PET and CT scan.  I had a 22mm primary, Clarks IV with ulceration. Before I went in for surgery this past February, they did a PETscan and confirmed melanoma in 1 lymph node – other than that, I was NED after surgery.  At the end of April, I had mets in my lungs so I advanced quite quickly to Stage 4 from Stage 3C. I had to wait 6 weeks to see how it was progressing and thankfully, it was growing slowly. I'm now on dacarbazine.

        Having a deep primary is scary because we're at high risk of re-occurence, but I'm so happy to hear your team is on top of this.  You could be very lucky and not have a re-occurence for months or years, nobody knows.   

        I agree with Teodora, after some time, you learn to cope easier.  The more you stress out about this, the more your immune system is effected and right now, you need to keep your immune system strong.  A positive attitude is half the battle of this disease and even though I'm Stage 4, I'm still living my life and expecting to be around for years like many others have.

        I wish you all the best with your scans.  Getting those results will hopefully give you some peace of mind.

        Lisa

        • July 2, 2011 at 12:31 pm
        Lisa13
        Participant

        I'm glad you're getting a PET and CT scan.  I had a 22mm primary, Clarks IV with ulceration. Before I went in for surgery this past February, they did a PETscan and confirmed melanoma in 1 lymph node – other than that, I was NED after surgery.  At the end of April, I had mets in my lungs so I advanced quite quickly to Stage 4 from Stage 3C. I had to wait 6 weeks to see how it was progressing and thankfully, it was growing slowly. I'm now on dacarbazine.

        Having a deep primary is scary because we're at high risk of re-occurence, but I'm so happy to hear your team is on top of this.  You could be very lucky and not have a re-occurence for months or years, nobody knows.   

        I agree with Teodora, after some time, you learn to cope easier.  The more you stress out about this, the more your immune system is effected and right now, you need to keep your immune system strong.  A positive attitude is half the battle of this disease and even though I'm Stage 4, I'm still living my life and expecting to be around for years like many others have.

        I wish you all the best with your scans.  Getting those results will hopefully give you some peace of mind.

        Lisa

        • July 2, 2011 at 6:10 pm
        DeniseK
        Participant

        Wow!  That was a large tumor!  The stress and anxiety comes from the whirlwind of events recently.  June 2nd biopsy results confirmed Melanoma, June 8th surgery, June  16th nodes confirmed negative, June 30th doctor wants PET Scan and MRI.  Everything all happened in a month!!  It's really been the craziest month of my life!!  I'm staying positive and healing nicely from surgery!  I have my moments but for the most part just happy to get this taken care of!  I REALLY appreciate everyones help and input!  It sucks that we have to deal with this but it's nice to know your not alone!!  THANK YOU!!!! 

        Denise

        • July 2, 2011 at 6:10 pm
        DeniseK
        Participant

        Wow!  That was a large tumor!  The stress and anxiety comes from the whirlwind of events recently.  June 2nd biopsy results confirmed Melanoma, June 8th surgery, June  16th nodes confirmed negative, June 30th doctor wants PET Scan and MRI.  Everything all happened in a month!!  It's really been the craziest month of my life!!  I'm staying positive and healing nicely from surgery!  I have my moments but for the most part just happy to get this taken care of!  I REALLY appreciate everyones help and input!  It sucks that we have to deal with this but it's nice to know your not alone!!  THANK YOU!!!! 

        Denise

        • July 3, 2011 at 5:08 am
        LynnLuc
        Participant

        Stay positive! In 2000 I had  Malignant Melanoma removed from my neck. "Clark's Level 3. Tumor Thickness 1.45mm. The Margins of Excision appear uninvolved". 

        It came back in 2009 ny my heart. Had Radiation and temodar- it was 4.3 cent.. It grew…

          I had surgery in March 2010 to remove it. It wasa 6.8 cent. in the largest part -by my heart and its been over 15 months now I am NED. I am in a vaccine trial now to hopefully  and prayfully to stay NED.

        • July 3, 2011 at 5:08 am
        LynnLuc
        Participant

        Stay positive! In 2000 I had  Malignant Melanoma removed from my neck. "Clark's Level 3. Tumor Thickness 1.45mm. The Margins of Excision appear uninvolved". 

        It came back in 2009 ny my heart. Had Radiation and temodar- it was 4.3 cent.. It grew…

          I had surgery in March 2010 to remove it. It wasa 6.8 cent. in the largest part -by my heart and its been over 15 months now I am NED. I am in a vaccine trial now to hopefully  and prayfully to stay NED.

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