Waiting....

AmyD1310
AmyD1310 Member Posts: 59
in Anal Cancer #1

Hello all,

I hope this message finds you well. I'm just checking in. I had my first post tx PET scan on Saturday and I am waiting for the results. I'm so scared and nervous! I just keep praying it is it clear. How do I keep my mind off of the waiting....?!  I feel like I am going crazy. Thanks all!

 

-Amy

Comments

  • Tushygirl
    Tushygirl Member Posts: 28 Member
    edited April 2017 #2
    I am not as far as you but

    I am not as far as you but can't wait for that day.  I am not sure what works for me will work for you but will pass it on.  When I had to wait the initial results then staging results I was having all sorts of bad thoughts.  Then one day it occurred to me that I really had no control over anything and the tests don't really change anything.  They only show a path forward.  This thought allowed me to relegate the bad thoughts to the back, at least part of the time.

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    edited April 2017 #3
    Amy

    The waiting is the hardest part isn't it? I found keeping busy helped get my mind off things, and try to keep in mind the really high chance you have of beating this! I hope you get your results tomorrow!

  • Kmessier
    Kmessier Member Posts: 79
    edited April 2017 #4
    Waiting

    waiting is the hardest.  I'm post surgery and I only have 2 weeks of chemo/radiation but I've had lots of problems and on Friday I'm having another endosocopy and colonoscopy I had c-diff and was in the hospital all last week. Now their looking again. On the waiting I listen to music, read, go to the CSN chat room, stay busy, and talk to my my two friends who've hung with me through everything. I waned to say hang in there and that there are lots of people who are willing to listen to you talk. My thoughts are with you Amy. I hope you get your results very soon. 

    Kim

  • AmyD1310
    AmyD1310 Member Posts: 59
    edited April 2017 #5
    I think I can celebrate...at least for now?!

    Hi again!

    So, I got my pet scan results, and both doctors said everything looks "great"! They both talked about expected hot spots due to inflammation from radiation, but that I have responded very well to treatment. My colorectal surgeon did a DRE and said he didn't feel a mass at all. With that and nothing "suspicious" on my scan he basically said I'm cured. Did anyone one else have a similar situation for their follow-up PET scan? I want to do a happy dance...can I??? Love to all.

     

    -Amy

  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
    #6
    Congratulations!

    Yes my pets always light up there because it's constantly under duress, inflammation, sore, angry, itchy.  I am so happy for you!!!  I am 6 1/4 years cured!

  • AmyD1310
    AmyD1310 Member Posts: 59
    #7

    What a relief! Thank you so much for your response and congratulations on 6 1/4 years! That's wonderful news too!!! 

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    #8
    Happy Dance

    Wonderful! Those hot spots are to be expected. Both my doctors said DRE is most important because their fingers can tell if the cancer is gone better than scans do right now since you have inflammation amd scarring that show on scan but they can tell if the tumor is gone by touch. It can feel a little anticlimactic when you've been through the treatment from hell and then you just have the doctor say "tumor is gone". Or maybe not anticlimactic but unreal? And then you have to shift gears and get back to your life. It's definately a transition. I remember my husband tearing up with relief and me feeling like I wasn't that relieved because I wasn't really sure yet that it was gone. But it was! And I'm a year out!

  • AmyD1310
    AmyD1310 Member Posts: 59
    #9
    Mollymaude

    That's is exactly how I feel! You hit the nail on the head. I am relieved to hear that the tumor is gone, but I kind of feel like, now what? Should I be doing something more? I suppose I am still in fight mode because I don't really know what to expect next. Both my colorectal surgeon and my radiation oncologist seemed pleased with the scan despite the lit areas (probably because they are used to it by now). I see my oncologist on Tuesday next week, so that will be a third set of eyes on my scan, and that will give me a little more comfort, I think. Thank you for responding to me! I'm so glad you are a year out with NED!

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    edited April 2017 #10
    Amy

    Glad I hit the nail on the head. If anything good can come of this it's being to help others going through the same thing. I started thinking more about the feeling of being relieved. I feel relief when I get an exam or a clean scan but there is still a guarded feeling like you can't relax completely. I think the phrase "cautiously optimistic" describes it best. There's always a realization that this can come back even if it's not likely.

  • jcorum
    jcorum Member Posts: 54 Member
    #11
    Great news Amy!

    For probably 3 years after my treatment ended, i thought about cancer at least once a day. i wondered if i would ever NOT think about it. Wondering if it would come back, wondering if planning vacation for the next year would happen or if cancer reoccuring would happen, etc. I can say that the time you DONT think about DOES come. Which is why i dont get on here much because weeks may go by that i dont think anything about cancer.  I promise you, that time will come for you too. It may be a year or two or three down the road. But it will. Just like my oncologist told me: that i was cured & the cancer should just be a blip in my life history.  And yes, he used the word cured. he said its one of the few cancers that they consider you can be cured of

  • mp327
    mp327 Member Posts: 4,440 Member
    edited April 2017 #12
    Amy

    There was some activity on my first post-treatment PET scan, which really upset me.  However, it turned out to be inflammation.  I'm glad you got good news from your doctor and I think you have every reason to be encouraged that your cancer is gone!

  • Wellness1
    Wellness1 Member Posts: 1
    #13
    AmyD1310 said:

    I think I can celebrate...at least for now?!

    Hi again!

    So, I got my pet scan results, and both doctors said everything looks "great"! They both talked about expected hot spots due to inflammation from radiation, but that I have responded very well to treatment. My colorectal surgeon did a DRE and said he didn't feel a mass at all. With that and nothing "suspicious" on my scan he basically said I'm cured. Did anyone one else have a similar situation for their follow-up PET scan? I want to do a happy dance...can I??? Love to all.

     

    -Amy

    Follow up tre

    I also am finish treatment 3/25/16 since than have had follow testing pet scans biopsy sigmoid scope cat scan physical exam all clear of cancer I was stage 3 with 3 lympnodes today I am cancer free I was treated at md Anderson with wonderful doctors. My Radilogist gave me some wonderful advice he said give yourself 10 minutes a day to think about what could be but u have to get on with your life being well It helps me alot

     

  • ginatom
    ginatom Member Posts: 44 Member
    #14
    Fabulous, Amy!  And good to

    Fabulous, Amy!  And good to know all this.  Thanks everyone.

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    edited May 2017 #15
    Wellness

    Welcome, and so glad your treatment was successful!!

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