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UGGGGG!!!!!! Scanxiety

Forums General Melanoma Community UGGGGG!!!!!! Scanxiety

  • Post
    dawn dion
    Participant

    Hello All!

    Hello All!

    So since I can't find anyone to chat with at 3 am (can't imagine why) I thought I would post instead!   I go for my first set of scans, since starting the GSK BRAF/Mek trial, on Thursday.   I know we all have "Scanxiety" and part of me really feels like everything is going to be "ACES" but then there is the other half that has all this wild crap running around in my head and I am just waiting for the Dr. to sucker punch me again.  To those of you who are "old pros" at this game, does this ever go away?  I know everyone says just live your life, but are you ever really able to make plans past tomorrow?  I catch myself doing so and then I think "oh wait".   Does this monster ever stop pissing you off?  Does every ache and pain ever stop freaking you out?   Do you ever stop questioning everything?   When you get to NED (where I hope beyond hope to be Thursday) or even stable, do you ever get a sense of relief? Or do you just sit and wait?  This makes me CRAZY!!!!!!   Even though this board scares the hell out of me sometimes I love it here because I know I am not alone – it's not like I can go wake up the hubs and say "so here's where I am" and truly expect him to understand.  He will try to understand, he will be compassionate and loving and tell me that he understands but I don't know that anyone else truly gets it.

    So that's my latest rant – thanks for reading.  Much luck to all of you!

    Hugs and Smiles

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  • Replies
      FormerCaregiver
      Participant

      It is just after 8pm on Tuesday night in this part of the world. As we all know "scanxiety" is
      very much part of the stress associated with melanoma. It should be in the dictionary, but I
      haven't been able to find it in any.

      If stable disease or NED can be achieved for a long time, then I feel that "scanxiety" can be
      reduced slightly. You are certainly not alone, and we very much know how you might be feeling
      because we have been through exactly what you are going through either as a patient or caregiver.

      I think that one should view things with a sense of optimism that there could be a real
      breakthrough in melanoma research very soon. One major hurdle with current experimental treatments
      is that they only work for some people, and for a certain time. However, there is some progress
      being made in finding out way this happens.

      You have asked some excellent questions, and perhaps other people will give you their opinions.

      Thanks for posting, and I hope this helps.

      Frank from Australia

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      FormerCaregiver
      Participant

      It is just after 8pm on Tuesday night in this part of the world. As we all know "scanxiety" is
      very much part of the stress associated with melanoma. It should be in the dictionary, but I
      haven't been able to find it in any.

      If stable disease or NED can be achieved for a long time, then I feel that "scanxiety" can be
      reduced slightly. You are certainly not alone, and we very much know how you might be feeling
      because we have been through exactly what you are going through either as a patient or caregiver.

      I think that one should view things with a sense of optimism that there could be a real
      breakthrough in melanoma research very soon. One major hurdle with current experimental treatments
      is that they only work for some people, and for a certain time. However, there is some progress
      being made in finding out way this happens.

      You have asked some excellent questions, and perhaps other people will give you their opinions.

      Thanks for posting, and I hope this helps.

      Frank from Australia

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        Laurie from maine
        Participant

        Hi,

        Yes you are not alone with your scananxiety and you are right I would think almost 95% of the people here know exactly what you are talking about regarding being anxious the week or two before scans.  As for the having melanoma be always in the front of your brain – I found in time it moves to the back, it still sneaks up but as you get further and further into it, you go on with life(I only say that as someone who has been extremely lucky to be NED for 2 years – I cannot speak for people who have reoccurences).  I do worry when I get aches and pains and think what if that is it coming back and I guess that is just the way it is.  I have learned a lot from the people on this website, I am in awe of their courage, positive attitude and faith as they fight their battles.  Most of them reach out and help others even thou they themselves are deep in their own battles, they are true warriors.    My prayers are always with them as they fight.  I will confess I struggle with a "why me" why am I lucky(so far)  as far as me currently being NED and  so many of the young people and the young people with children fighting the hardest battles, I do NOT understand why they are having to go thru this!  melanoma is such a horrible disease.  

        The positive I have gotten out of this – is cancer is truly a wake up call – live your life – enjoy the day and the days that your body feels good, life is short no matter who you are. 

        wow sorry I am very "deep thinking" this morning,  I am struggling with my emotions as  my heart is breaking for all of those fighting hard fights right now,  I feel I know each one personally .    take care

        laurie from maine 3C

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        Laurie from maine
        Participant

        Hi,

        Yes you are not alone with your scananxiety and you are right I would think almost 95% of the people here know exactly what you are talking about regarding being anxious the week or two before scans.  As for the having melanoma be always in the front of your brain – I found in time it moves to the back, it still sneaks up but as you get further and further into it, you go on with life(I only say that as someone who has been extremely lucky to be NED for 2 years – I cannot speak for people who have reoccurences).  I do worry when I get aches and pains and think what if that is it coming back and I guess that is just the way it is.  I have learned a lot from the people on this website, I am in awe of their courage, positive attitude and faith as they fight their battles.  Most of them reach out and help others even thou they themselves are deep in their own battles, they are true warriors.    My prayers are always with them as they fight.  I will confess I struggle with a "why me" why am I lucky(so far)  as far as me currently being NED and  so many of the young people and the young people with children fighting the hardest battles, I do NOT understand why they are having to go thru this!  melanoma is such a horrible disease.  

        The positive I have gotten out of this – is cancer is truly a wake up call – live your life – enjoy the day and the days that your body feels good, life is short no matter who you are. 

        wow sorry I am very "deep thinking" this morning,  I am struggling with my emotions as  my heart is breaking for all of those fighting hard fights right now,  I feel I know each one personally .    take care

        laurie from maine 3C

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      Carol Taylor
      Participant

      Hey Dawn,

      You're aren't alone and feel free to rant and rave! Unless you've been here, you don't and can't "get it."  My hubby tries, bless his heart, and caregivers need support because it's tough on them, but only someone who actually has to put their body under the scans and get their blood drawn and have their bodies cut up and stuff taken out to get melanoma out with it…well, you know. You're there.

      It does get easier and life takes on a new normal. Stay ticked off enough to be a fighter, but keep a positive attitude along with the fighting attitude. It can be done. Attitude is key. Limit, as severely as you can, what melanoma robs you of. It took a chunk out of my arm, all 27 lymph nodes from under my left arm, ushered in lymphedema, and has me with a stage 3b and equally lovely stat to match…but, it will not take my attitude. It will not take my faith. It has taught me I'm stronger than I ever thought and that life is far more precious than I ever fully realized. I've let it teach me lessons that I've needed to be better and not bitter. Don't let it tick you off so much that you become bitter! Beasts like that! Show that beast who's boss and become better! Focus on what matters and let go of the rest. This is where you are, but this isn't where you'll always be. Take this lemon and either eat it whole OR make a lemon meringue pie with a shot of lemonade.  That's YOUR call, not the beast's.

      Lord, be with our friend Dawn here. Teach her how to handle this part of her life and remind her it is only "part." Be with her Thursday and on into the future and with her hubby too. Strengthen their bond and give them hope and peace. Amen.

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      Carol Taylor
      Participant

      Hey Dawn,

      You're aren't alone and feel free to rant and rave! Unless you've been here, you don't and can't "get it."  My hubby tries, bless his heart, and caregivers need support because it's tough on them, but only someone who actually has to put their body under the scans and get their blood drawn and have their bodies cut up and stuff taken out to get melanoma out with it…well, you know. You're there.

      It does get easier and life takes on a new normal. Stay ticked off enough to be a fighter, but keep a positive attitude along with the fighting attitude. It can be done. Attitude is key. Limit, as severely as you can, what melanoma robs you of. It took a chunk out of my arm, all 27 lymph nodes from under my left arm, ushered in lymphedema, and has me with a stage 3b and equally lovely stat to match…but, it will not take my attitude. It will not take my faith. It has taught me I'm stronger than I ever thought and that life is far more precious than I ever fully realized. I've let it teach me lessons that I've needed to be better and not bitter. Don't let it tick you off so much that you become bitter! Beasts like that! Show that beast who's boss and become better! Focus on what matters and let go of the rest. This is where you are, but this isn't where you'll always be. Take this lemon and either eat it whole OR make a lemon meringue pie with a shot of lemonade.  That's YOUR call, not the beast's.

      Lord, be with our friend Dawn here. Teach her how to handle this part of her life and remind her it is only "part." Be with her Thursday and on into the future and with her hubby too. Strengthen their bond and give them hope and peace. Amen.

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      nicoli
      Participant

      I think the scanxiety will never really go away.

      And it isn't limited to those with melanoma or low survival chances. My sister is two years out from uterine cancer treatment, is completely NED, has an 85% survival chance and is more anxious than I am when she has scans.

      Nicki

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      nicoli
      Participant

      I think the scanxiety will never really go away.

      And it isn't limited to those with melanoma or low survival chances. My sister is two years out from uterine cancer treatment, is completely NED, has an 85% survival chance and is more anxious than I am when she has scans.

      Nicki

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      washoegal
      Participant

      Even though you are going though the typical scanxiety I like your attitude!  Being pissed at the diesese is a good thing,  that's where you want your energy focused.  It's the fighting attitude that gets us through this.  And you will do just that. 

      Oh, yea I notice all those aches and the new bumps on my body, etc.  I watch them with an eagle eye.  About once a week I go to my husband and say "honey, look at this would you".  I end up at the derm a month earlier than he has me scheduled because I don't like something.  But the rest of the time, I really, really try to go on with my life. 

      Sounds like you are on a good trial there and I hope it works for you. 

      Good Luck

      Mary

      Stage 3

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      washoegal
      Participant

      Even though you are going though the typical scanxiety I like your attitude!  Being pissed at the diesese is a good thing,  that's where you want your energy focused.  It's the fighting attitude that gets us through this.  And you will do just that. 

      Oh, yea I notice all those aches and the new bumps on my body, etc.  I watch them with an eagle eye.  About once a week I go to my husband and say "honey, look at this would you".  I end up at the derm a month earlier than he has me scheduled because I don't like something.  But the rest of the time, I really, really try to go on with my life. 

      Sounds like you are on a good trial there and I hope it works for you. 

      Good Luck

      Mary

      Stage 3

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      lhaley
      Participant

      You are definitely not alone!!  I've been stage IV for 4.5 years and if anything I think my scan anxiety has worsened. I have had 5 recurrances and always feel like I'm just waiting for another issue.   Last time even after I was told the results (stable) my heart couldn't stop pounding. The Dr. was listening to my heart and pulled the stethascope away and said "whoa, your heart is going way to fast" what did he expect!   I have the scans in the am. and get the results immediately afterwards. That does help but ……..

      I hope you get good news! We will be waiting for your post,

      Linda

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      lhaley
      Participant

      You are definitely not alone!!  I've been stage IV for 4.5 years and if anything I think my scan anxiety has worsened. I have had 5 recurrances and always feel like I'm just waiting for another issue.   Last time even after I was told the results (stable) my heart couldn't stop pounding. The Dr. was listening to my heart and pulled the stethascope away and said "whoa, your heart is going way to fast" what did he expect!   I have the scans in the am. and get the results immediately afterwards. That does help but ……..

      I hope you get good news! We will be waiting for your post,

      Linda

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