Almost 3 years since treatment ended and still no scans?

Chris Ptown
Chris Ptown Member Posts: 116

Hi Everybody!

 

I hope you are all doing great!  I finished my treatments on 12/23/11 and have never had a PET Scan or CT Scan since.  I have been checked every six months by my doctor who gave me an anal exam each time with a scope etc.  Is it strange that I have never had any scans?  I had a dream last night that they found a tumor somewhere in my body (can't remember where because can't remember most of the dream) but it's definitely been on my mind.  I am moving to NYC on November 1st and would like to go there thinking I am okay.  I called the doctor today but he isn't in until Tuesday.  His assistant is going to ask him about scans for me when he gets back.  So my question is, have any of you not gotten scans after your treatment ended?

 

Thank you!

Chris

Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    Chris!

    Hello Stranger!  How nice it is to see you back here--love your new pic! 

    Okay, I am most likely an exception to the rule regarding follow-up scans, so please do not think that your doctors are remiss after I tell you that I have been run through the scan machine (both PET and CT) so many times, I ought to glow in the dark!  Actually, the National Comprehensive Cancer Network guidelines for follow-up of anal cancer do not recommend any scans post-treatment, except in cases of tumors stage T3-T4 or where inguinal nodes were positive.  In those cases, chest/abdominal/pelvic imaging is recommended for 3 years post-treatment.

    I do not recall what your stage at the time of diagnosis was, but unless you were T3 or T4 or had nodal involvement, you really haven't needed any scans.  I do not want anyone to judge their follow-up care by mine (it's rather complicated).  You are being followed correctly, IMO.  However, if you really need the peace of mind a scan can give you, then I hope your doctor will oblige.  If you are doing well and feeling great, don't worry about not getting approval for one.

    How exciting that you are moving to NYC!  I wish you all the best with your move and may you continue to enjoy excellent health!

    Martha 

  • Chris Ptown
    Chris Ptown Member Posts: 116
    mp327 said:

    Chris!

    Hello Stranger!  How nice it is to see you back here--love your new pic! 

    Okay, I am most likely an exception to the rule regarding follow-up scans, so please do not think that your doctors are remiss after I tell you that I have been run through the scan machine (both PET and CT) so many times, I ought to glow in the dark!  Actually, the National Comprehensive Cancer Network guidelines for follow-up of anal cancer do not recommend any scans post-treatment, except in cases of tumors stage T3-T4 or where inguinal nodes were positive.  In those cases, chest/abdominal/pelvic imaging is recommended for 3 years post-treatment.

    I do not recall what your stage at the time of diagnosis was, but unless you were T3 or T4 or had nodal involvement, you really haven't needed any scans.  I do not want anyone to judge their follow-up care by mine (it's rather complicated).  You are being followed correctly, IMO.  However, if you really need the peace of mind a scan can give you, then I hope your doctor will oblige.  If you are doing well and feeling great, don't worry about not getting approval for one.

    How exciting that you are moving to NYC!  I wish you all the best with your move and may you continue to enjoy excellent health!

    Martha 

    Martha!

    Thank you Martha!  So glad to hear from you and really glad you are doing well!  You have always been so kind to me and everyone else on this board!  We are lucky to have you!

     

    xo

    Chris

  • sandysp
    sandysp Member Posts: 868 Member
    You look fantastic!

    Hi Chris,

    You look fantastic. So glad to see. It's hard to believe you are coming up on three years. Good for you.

    Martha is the expert on the guidelines. I think I must be glowing also, I've had so many scans, but I was clearly stage 3b with inguinal and iliac node involvement. 

    Good for you for being an advocate for yourself.

    I understand how you could be dreaming about tumors, etc. I dreamt one night I was getting eaten alive by kittens once! How weird! But it was around the spookiness of scanxiety as I was having scans one year, then six months, then less than three months because of something that is related apparently to mold rather than cancer. Scans show a lot of false positives so maybe you are better off not having to have them particularly if your cancer wasn't advanced.

    I'm in New York too. Although this is a really big state.

    Are you moving to the Big Apple?

    All the best to you,

    Sandy

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    Hello, Chris Ptown.........

    I recently had a three month follow-up CT scan and sigmoidoscopy and am awaiting my appointments to find out what the results mean. I seem to have had stage IIIA or B. I am new to all this, though, so I don't know the protocols like the other women who have replied to you. I agree that if a scan makes you feel better, go for it. If you are doing well, but have concerns about radiation exposure, discuss it with your oncologist.

    I live in New York State, too, about 1-1/2 hours from NYC. In addition, I go to Cape Cod whenever I can - I came home Friday after being soaked by that Nor'easter. Are you on CC, too?

  • qv62
    qv62 Member Posts: 434 Member
    Chris Ptown

    HI Chris, I am on the newbie end as far as treatment my last treatment was the end of June and I had an MRI 3 months post treatment. Not sure what my future scan plan will be but I am glad I had that one to see that the treatment was effective. Let us know what's happening. Good luck with your findings.

  • Chris Ptown
    Chris Ptown Member Posts: 116
    sandysp said:

    You look fantastic!

    Hi Chris,

    You look fantastic. So glad to see. It's hard to believe you are coming up on three years. Good for you.

    Martha is the expert on the guidelines. I think I must be glowing also, I've had so many scans, but I was clearly stage 3b with inguinal and iliac node involvement. 

    Good for you for being an advocate for yourself.

    I understand how you could be dreaming about tumors, etc. I dreamt one night I was getting eaten alive by kittens once! How weird! But it was around the spookiness of scanxiety as I was having scans one year, then six months, then less than three months because of something that is related apparently to mold rather than cancer. Scans show a lot of false positives so maybe you are better off not having to have them particularly if your cancer wasn't advanced.

    I'm in New York too. Although this is a really big state.

    Are you moving to the Big Apple?

    All the best to you,

    Sandy

    Hi Sandy!

    So good to see you!  Another familiar and friendly face!  I am actually moving to Maplewood, NJ and looking for work in Manhattan.  Fingers crossed!  You look really good too!  Hugs!

  • LaCh
    LaCh Member Posts: 557
    qv62 said:

    Chris Ptown

    HI Chris, I am on the newbie end as far as treatment my last treatment was the end of June and I had an MRI 3 months post treatment. Not sure what my future scan plan will be but I am glad I had that one to see that the treatment was effective. Let us know what's happening. Good luck with your findings.

    Don't go by me

    this isn't advice, it's just what I do for follow up. Nothing. I'm two years post Dx and something less than that post Tx. I was stage one, had one analscope six months post Tx and that's it.  I assume it's gone and won't recur, don't go for follow ups and in fact, avoid doctors all together. I don't worry about it and don't think about it much. As I said, I don't recommend my approach, it's just what I do. Not sure if this post is about follow-up or place of residence (or both) but for whatever it's worth, I was born in Manhattan, live in Manhattan and expect to die in Manhattan, hopefully, not in the immediate future.  Cancer doesn't worry me; my main concern is that we don't get decimated by another winter from hell. That, and the horrifying way in which the world seems to be unraveling.  Anyhow, as I said, I'm not advocating for, or recommending what I'm doing vis a vis follow-up; I'm just reporting it.

  • mp327
    mp327 Member Posts: 4,440 Member
    LaCh said:

    Don't go by me

    this isn't advice, it's just what I do for follow up. Nothing. I'm two years post Dx and something less than that post Tx. I was stage one, had one analscope six months post Tx and that's it.  I assume it's gone and won't recur, don't go for follow ups and in fact, avoid doctors all together. I don't worry about it and don't think about it much. As I said, I don't recommend my approach, it's just what I do. Not sure if this post is about follow-up or place of residence (or both) but for whatever it's worth, I was born in Manhattan, live in Manhattan and expect to die in Manhattan, hopefully, not in the immediate future.  Cancer doesn't worry me; my main concern is that we don't get decimated by another winter from hell. That, and the horrifying way in which the world seems to be unraveling.  Anyhow, as I said, I'm not advocating for, or recommending what I'm doing vis a vis follow-up; I'm just reporting it.

    LaCh

    Everyone should do what makes them comfortable. 

    However, for anyone who hasn't been on this board for very long, I would like to remind them that follow-ups can and do catch things very early, which can mean avoiding recurrence.  Case in point:  At exactly 2 years post-treatment, I had my regular follow-up exam, at which time my colorectal doc found 3 very small condylomas (internal anal warts) which had the potential of becoming cancerous if left untreated or not removed.  I had outpatient surgery for removal and fortunately, the biopsies came back negative.  My doctor can look up my butt as often as necessary to keep me from going through the hell of this cancer again.  That is just my opinion.

  • mxperry220
    mxperry220 Member Posts: 493 Member
    mp327 said:

    LaCh

    Everyone should do what makes them comfortable. 

    However, for anyone who hasn't been on this board for very long, I would like to remind them that follow-ups can and do catch things very early, which can mean avoiding recurrence.  Case in point:  At exactly 2 years post-treatment, I had my regular follow-up exam, at which time my colorectal doc found 3 very small condylomas (internal anal warts) which had the potential of becoming cancerous if left untreated or not removed.  I had outpatient surgery for removal and fortunately, the biopsies came back negative.  My doctor can look up my butt as often as necessary to keep me from going through the hell of this cancer again.  That is just my opinion.

    Agree With You

    Since La Cha was Stage 1 she may feel more comfortable with her decisions.

    Mike

  • angela k
    angela k Member Posts: 7
    mp327 said:

    LaCh

    Everyone should do what makes them comfortable. 

    However, for anyone who hasn't been on this board for very long, I would like to remind them that follow-ups can and do catch things very early, which can mean avoiding recurrence.  Case in point:  At exactly 2 years post-treatment, I had my regular follow-up exam, at which time my colorectal doc found 3 very small condylomas (internal anal warts) which had the potential of becoming cancerous if left untreated or not removed.  I had outpatient surgery for removal and fortunately, the biopsies came back negative.  My doctor can look up my butt as often as necessary to keep me from going through the hell of this cancer again.  That is just my opinion.

    Agreed - Everyone should do what makes them comfortable

    I have had one PET and a couple of CT's in the 4 years post for IIIB treatement.  I choose to not have any more scans. My annual anoscopy this month was clean. 

    If it brings you peace of mind, by all means, push for the scan.  Surprisingly enough, I sleep well without them now.

    Merry and bright holiday wishes for all!

     

    Angela