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Very worried – 3 month scan results

Forums General Melanoma Community Very worried – 3 month scan results

  • Post
    Lisa13
    Participant

    I just got a call from my oncologist regarding my CT scan. They found some very small nodules in my lungs (up to 20) and my oncologist wants to have me do another CT in a month to see if they've grown in size.  He also wants his radiologist double check the scans as well as not all nodules are cancerous.  Unfortunately, this means I won't be able to participate in the ipi trial in Montreal.

    Has anyone had nodules turn up that arn't cancer?  I'm really trying to hold it together until I have something to worry about, but this is incredibly hard.

    I just got a call from my oncologist regarding my CT scan. They found some very small nodules in my lungs (up to 20) and my oncologist wants to have me do another CT in a month to see if they've grown in size.  He also wants his radiologist double check the scans as well as not all nodules are cancerous.  Unfortunately, this means I won't be able to participate in the ipi trial in Montreal.

    Has anyone had nodules turn up that arn't cancer?  I'm really trying to hold it together until I have something to worry about, but this is incredibly hard.

    Lisa

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  • Replies
      washoegal
      Participant

      Lisa, Is this your first scan?  If so, it could just be calcification.  Unfortunately, it is usually a waiting period that tells.  I am so very sorry you have been at least temporarily removed from the Ipi trial.  Try to keep yourself busy so you don't have much time to think about it over the next month. 

       

      Good Luck

      Mary

      Stage 3

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        jhoey
        Participant

        Lisa

        Just wanted to tell you that the nodulars in my lungs were melanoma & that is what got me into the ipi trial.  What would have kept me out of the ipi trial would have been if it was in the brain.  i guess all trials are different.  Hope you do get into the Ipi trial, its been working for me.

        Good luck

        Janet

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        jhoey
        Participant

        Lisa

        Just wanted to tell you that the nodulars in my lungs were melanoma & that is what got me into the ipi trial.  What would have kept me out of the ipi trial would have been if it was in the brain.  i guess all trials are different.  Hope you do get into the Ipi trial, its been working for me.

        Good luck

        Janet

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        Lisa13
        Participant

        Hi Mary,

        This is my very first scan – less than 3 months after my WLE and lymph node dissection.  I didn't even get a chance to get into the trial as this was the scan to confirm everything. This completely sucks, but I will continue to remain hopeful that these nodules are nothing.

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        Carol Taylor
        Participant

        Hang in there Lisa. I know "down" doesn't beging to cover where you are right now, but keep hope and try to be positive right now.  Praying for you, Friend.

        Lord, in Your mercy, help Lisa. God, You know what she needs, so please open those doors wide and calm her. Help her focus on staying positive. Amen

        Grace and peace,

        Carol

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        Carol Taylor
        Participant

        Hang in there Lisa. I know "down" doesn't beging to cover where you are right now, but keep hope and try to be positive right now.  Praying for you, Friend.

        Lord, in Your mercy, help Lisa. God, You know what she needs, so please open those doors wide and calm her. Help her focus on staying positive. Amen

        Grace and peace,

        Carol

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        Lisa13
        Participant

        Hi Mary,

        This is my very first scan – less than 3 months after my WLE and lymph node dissection.  I didn't even get a chance to get into the trial as this was the scan to confirm everything. This completely sucks, but I will continue to remain hopeful that these nodules are nothing.

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      washoegal
      Participant

      Lisa, Is this your first scan?  If so, it could just be calcification.  Unfortunately, it is usually a waiting period that tells.  I am so very sorry you have been at least temporarily removed from the Ipi trial.  Try to keep yourself busy so you don't have much time to think about it over the next month. 

       

      Good Luck

      Mary

      Stage 3

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      Erinmay22
      Participant

      Lisa –

      I know exactly what you are going thru.  In Jan I tried to get in the Ipi trial and they found 12+ nodules between my 2 lungs.  Instead of waiting and rescanning, they did go ahead and do a VAT's procedure to biopsy 2 of the nodules.

      Unfortunately they did come back + for melanoma.  But I just had a scans in April (where technically there should be 10 or so nodules still there) and all but 1 was gone (and the one that is there is TINY like all the others were).

      So while it doesn't paint a great picture, it does show that there is always a strong possibility that the spots could just be infection or false positives etc.  Hang in there and keep us posted!   We all know how scary it can be.

      Erin

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      Erinmay22
      Participant

      Lisa –

      I know exactly what you are going thru.  In Jan I tried to get in the Ipi trial and they found 12+ nodules between my 2 lungs.  Instead of waiting and rescanning, they did go ahead and do a VAT's procedure to biopsy 2 of the nodules.

      Unfortunately they did come back + for melanoma.  But I just had a scans in April (where technically there should be 10 or so nodules still there) and all but 1 was gone (and the one that is there is TINY like all the others were).

      So while it doesn't paint a great picture, it does show that there is always a strong possibility that the spots could just be infection or false positives etc.  Hang in there and keep us posted!   We all know how scary it can be.

      Erin

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        dawn dion
        Participant

        OH Lisa!  I am so bummed for you !  I know the anxiety you are feeling.   I am crossing my fingers for you that it is a big NOTHING – however, I believe someone said it earlier, if it turns out to be more Mel it will more than likely get you right into the ipi trials without having to worry about getting the placebo.   There is nothing fun about any of this.  Keeping you in my thoughts.

        Hugs and Smiles

        Dawn

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        dawn dion
        Participant

        OH Lisa!  I am so bummed for you !  I know the anxiety you are feeling.   I am crossing my fingers for you that it is a big NOTHING – however, I believe someone said it earlier, if it turns out to be more Mel it will more than likely get you right into the ipi trials without having to worry about getting the placebo.   There is nothing fun about any of this.  Keeping you in my thoughts.

        Hugs and Smiles

        Dawn

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        boot2aboot
        Participant

        Lisa,

        i am truly sorry to hear this…praying for calcifications for you and speedy treatments for you

        boots

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        boot2aboot
        Participant

        Lisa,

        i am truly sorry to hear this…praying for calcifications for you and speedy treatments for you

        boots

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        Lisa13
        Participant

        Hi Erin,

        How did you get rid of the nodules?  Did you have treatment or did they just disappear on their own?

         

        Lisa

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        Lisa13
        Participant

        Hi Erin,

        How did you get rid of the nodules?  Did you have treatment or did they just disappear on their own?

         

        Lisa

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        Erinmay22
        Participant
        Lisa-

        That is the big question! After they confirmed melanoma march 1st, I was trying get in the braf trial (since I didn’t get in ipi trial) and that’s when I had my next scan. The spots were just gone… They said I didn’t have enough active measurable growth to qualify for a trial.

        So I don’t see them again until may 13th. Yes the wait is awful! And the unknown is horrible! I will discuss at my next appointment what we think should be the course of tx!

        Hang in there! I know it’s easier said than done!
        Erin

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        Erinmay22
        Participant
        Lisa-

        That is the big question! After they confirmed melanoma march 1st, I was trying get in the braf trial (since I didn’t get in ipi trial) and that’s when I had my next scan. The spots were just gone… They said I didn’t have enough active measurable growth to qualify for a trial.

        So I don’t see them again until may 13th. Yes the wait is awful! And the unknown is horrible! I will discuss at my next appointment what we think should be the course of tx!

        Hang in there! I know it’s easier said than done!
        Erin

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      FormerCaregiver
      Participant

      I am sorry to read this. Although you are ineligible for one clinical trial, there are likely to
      be others that you may be able to get into. However, this might mean that you may have to travel
      a bit to get to the best trial for you. Here are the ones that are recruiting patients in Canada:
      http://www.clinicaltrials.gov/ct2/results?term=melanoma&recr=Open&rslt=&type=Intr&cond=&intr=&outc=&lead=&spons=&id=&state1=&cntry1=NA%3ACA&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=&rcv_e=&lup_s=&lup_e=

      It is always possible that the nodules are not cancer. If you can have a PET scan soon, that will
      give you a firm indication as to the chance that they may or may not be malignant. However, they
      are probably too small to be seen by the PET scan at the moment so I can understand why your
      doctor wants to wait to see what happens.

      Hope this helps.

      Frank from Australia

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      FormerCaregiver
      Participant

      I am sorry to read this. Although you are ineligible for one clinical trial, there are likely to
      be others that you may be able to get into. However, this might mean that you may have to travel
      a bit to get to the best trial for you. Here are the ones that are recruiting patients in Canada:
      http://www.clinicaltrials.gov/ct2/results?term=melanoma&recr=Open&rslt=&type=Intr&cond=&intr=&outc=&lead=&spons=&id=&state1=&cntry1=NA%3ACA&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=&rcv_e=&lup_s=&lup_e=

      It is always possible that the nodules are not cancer. If you can have a PET scan soon, that will
      give you a firm indication as to the chance that they may or may not be malignant. However, they
      are probably too small to be seen by the PET scan at the moment so I can understand why your
      doctor wants to wait to see what happens.

      Hope this helps.

      Frank from Australia

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        Lisa13
        Participant

        I'm seeing the oncologist next week so I'll be asking more questions.  I'd rather not wait a month to see if they grow, so I'll suggest a VAT procedure (biopsy).  I'm also going to suggest treatment right away regardless of what they're thinking since I don't feel waiting is a good thing.  Both the trial Dr and my oncologist both suggested IL-21 if it is melanoma. Has anyone heard of this drug and if it's been promising?

        I'm continuing to remain optimistic that this MAY be nothing. My hiatal hernia and acid reflex has been bad the last couple of weeks as have my allergies, so maybe that's why these nodules are showing up in my lungs?  I refuse to venture into the land of Stage 4 unless they confirm it.

        Always have hope.

        Lisa

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        Lisa13
        Participant

        I'm seeing the oncologist next week so I'll be asking more questions.  I'd rather not wait a month to see if they grow, so I'll suggest a VAT procedure (biopsy).  I'm also going to suggest treatment right away regardless of what they're thinking since I don't feel waiting is a good thing.  Both the trial Dr and my oncologist both suggested IL-21 if it is melanoma. Has anyone heard of this drug and if it's been promising?

        I'm continuing to remain optimistic that this MAY be nothing. My hiatal hernia and acid reflex has been bad the last couple of weeks as have my allergies, so maybe that's why these nodules are showing up in my lungs?  I refuse to venture into the land of Stage 4 unless they confirm it.

        Always have hope.

        Lisa

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        Erinmay22
        Participant

        Good luck!  yes ask about the VAT's.  Depending on where they are (there were 2 on the outer left lobe of my left lung that the surgeon thought he could get to easily).  I'm not sure if they have to actually crack you open to get to a spot you'd want them to do that.  But my oncologist wasn't happy with waiting to see if things grew.  He wanted to know right away.

        I do know my first med onc (I was in the middle of moving when all this happen for me) said that IL-2 while toxic, has shown to be helpful on lung mets. 

        What size are your spots?  Mine were all 2mm-4mm.  I'm guessing since these were all small since they were just found.

        I do completely empathize with you and your comments above.  You should see some of the emails I was sending my med onc and his nurses about the wait for the trial they were trying to get me in, about how could we let this horrible stuff just keep growing in me with no plan together.  Then when there was a mix up on the slides they sent to the drug company to test for B-RAF and they canceled all outstanding appointments I was crushed!  But…  then they got my scans back on the schedule and everything came back looking much better than my Jan scans and I felt a little silly….

        But that doesn't take away the point that you must be your own advocate!  Make sure they answer all your questions and make you feel like you know what's going on. 

        Cheers,

        Erin

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        Erinmay22
        Participant

        Good luck!  yes ask about the VAT's.  Depending on where they are (there were 2 on the outer left lobe of my left lung that the surgeon thought he could get to easily).  I'm not sure if they have to actually crack you open to get to a spot you'd want them to do that.  But my oncologist wasn't happy with waiting to see if things grew.  He wanted to know right away.

        I do know my first med onc (I was in the middle of moving when all this happen for me) said that IL-2 while toxic, has shown to be helpful on lung mets. 

        What size are your spots?  Mine were all 2mm-4mm.  I'm guessing since these were all small since they were just found.

        I do completely empathize with you and your comments above.  You should see some of the emails I was sending my med onc and his nurses about the wait for the trial they were trying to get me in, about how could we let this horrible stuff just keep growing in me with no plan together.  Then when there was a mix up on the slides they sent to the drug company to test for B-RAF and they canceled all outstanding appointments I was crushed!  But…  then they got my scans back on the schedule and everything came back looking much better than my Jan scans and I felt a little silly….

        But that doesn't take away the point that you must be your own advocate!  Make sure they answer all your questions and make you feel like you know what's going on. 

        Cheers,

        Erin

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      Jamietk
      Participant

      Lisa,

      I am stage IB (based on first path report at home, 2.0mm) or IIA (based on path report at MDA of 2.1mm). My very first follow-up after having my WLE/SNB was a CT scan (because I had some weird symptoms). I had several spots in my liver, both lungs, and right breast. We've watched these on CT and MRI for 5 years now and nothing has changed. They consider them benign. They did do a biopsy on the breast 4 years ago. I'm proof that you can have many spots and they could all be benign. Hang in there. Keep us posted. Will be praying.

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      Jamietk
      Participant

      Lisa,

      I am stage IB (based on first path report at home, 2.0mm) or IIA (based on path report at MDA of 2.1mm). My very first follow-up after having my WLE/SNB was a CT scan (because I had some weird symptoms). I had several spots in my liver, both lungs, and right breast. We've watched these on CT and MRI for 5 years now and nothing has changed. They consider them benign. They did do a biopsy on the breast 4 years ago. I'm proof that you can have many spots and they could all be benign. Hang in there. Keep us posted. Will be praying.

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