Getting Stressed about Follow-up CT - 21 months post treatment

7243
7243 Member Posts: 249 Member
edited October 2012 in Anal Cancer #1
Hello Friends ... my CT scan is coming up in November. I'm getting nervous and anxious. This is the first time I WON'T have a PET with my scans as the insurance will no longer pay. So CT - chest/pelvis/abdomen, Labs, and exam (DRE and anoscope).

I need some encouragement if you have a moment? What was it like for you at this time after treatment? I feel stronger and have few anal symptoms ... some stinging and pinching on BM still that worries me. Do you or did you still have local, anal symptoms at 21 months post treatment or around this timeframe?

Any words of encouragement or support re; ongoing symptoms are welcome! Thank you and I hope each of you is doing well today!

They said I was stage I, however there was a small node seen on ultrasound, although they said it was in the treatment field and no issue with pelvic or rectal nodes on any scans since. But I worry.

I had the Nigra protocol of combined chemo/radiation, Mitomycin and 5 FU and 28 radiation treatments and finished in February 2011.

I fear local recurrence and distant metastasis ... just like the fears many of you struggle with too.



Thanks for any support!

xo

Comments

  • RoseC
    RoseC Member Posts: 559
    #2
    Hi 7243!
    Not to fear - I still have that pinching feeling at 4 years out. That and an occasional bit of blood, specially after a hard bowel movement or after diarrhea. My colo-rectal surgeon knows about it and said not to worry about it - it's a lasting effect from the biopsies and radiation.

    I only had one PET scan after treatment - can't remember exactly when it was but I think it was fairly early on, like maybe around 1 year out. I had a spot on my liver as well that seems to have disappeared over time.

    Hope all goes well with your tests - I still get a bit anxious every time an oncology or colo-rectal appointment nears, but it's been fine and I know you will be too.
  • mp327
    mp327 Member Posts: 4,440 Member
    #3
    7243
    I am over 4 year post-treatment and I still get nervous at scan, not to mention still having the occasional issues, which always shake me up a little. What you are feeling is totally expected. We all fear recurrence or spread. However, you are feeling strong and are asymptomatic, so please try to not worry. Instead, think positive! I'm sure you're going to get good news.
  • Dog Girl
    Dog Girl Member Posts: 100
    #4
    Getting stressed
    Ah yes, our friend, Scanxiety. My followup is exactly as yours has been and I am 3+ years post tx. My insurance only covered one PET scan after tx and I was considering paying the difference between a CT scan and a PET scan out of my pocket, but when I asked my chemo dr. what he thought, he said he thought CT scans would be fine. And I think the recommendations for followup have even changed to that (CTs instead of multiple PETs) since I underwent tx in 2009.

    My understanding is that if there is a reoccurance, it is generally in the same location as the initial tumor and the DREs and anoscopy will check that out. The CT scan of the chest, abdomen, pelvis which check for metz to the lungs or liver. And you are approaching the two year mark which from what I've been told and from what I've read is a real milestone. Not to say that it can't happen, but generally if you are going to have a reoccurance, it will be during the first two years post tx. May your test results be NED!
  • Marynb
    Marynb Member Posts: 1,118
    #5
    Dog Girl said:

    Getting stressed
    Ah yes, our friend, Scanxiety. My followup is exactly as yours has been and I am 3+ years post tx. My insurance only covered one PET scan after tx and I was considering paying the difference between a CT scan and a PET scan out of my pocket, but when I asked my chemo dr. what he thought, he said he thought CT scans would be fine. And I think the recommendations for followup have even changed to that (CTs instead of multiple PETs) since I underwent tx in 2009.

    My understanding is that if there is a reoccurance, it is generally in the same location as the initial tumor and the DREs and anoscopy will check that out. The CT scan of the chest, abdomen, pelvis which check for metz to the lungs or liver. And you are approaching the two year mark which from what I've been told and from what I've read is a real milestone. Not to say that it can't happen, but generally if you are going to have a reoccurance, it will be during the first two years post tx. May your test results be NED!

    Scans
    Hi. I understand your anxiety. I am only one 1/2 years post treatment. I have not had any post treatment scans. I was told that the protocol has changed, due to the current knowledge of the harm that scans cause. So, I am totally confused about why some people are having scans. A clean scan would sure be a comfort, but even if the scan shows cancer, I would want to know. I am seen every three months, but no scans. Has anyone else been told of this new protocol? Seems like most still have scans.

    As far as symptoms, I still have some minor blood from time to time. Also, I sometimes get a deep ache for no apparent reason.

    Think positive! Good luck with the scans
  • Lorikat
    Lorikat Member Posts: 681 Member
    #6
    Marynb said:

    Scans
    Hi. I understand your anxiety. I am only one 1/2 years post treatment. I have not had any post treatment scans. I was told that the protocol has changed, due to the current knowledge of the harm that scans cause. So, I am totally confused about why some people are having scans. A clean scan would sure be a comfort, but even if the scan shows cancer, I would want to know. I am seen every three months, but no scans. Has anyone else been told of this new protocol? Seems like most still have scans.

    As far as symptoms, I still have some minor blood from time to time. Also, I sometimes get a deep ache for no apparent reason.

    Think positive! Good luck with the scans

    Scans or not?
    I was told at my last check up that INSURANCE will no longer pay for a scan every 3 or 6 months. I left wondering if this is a good thing? Should we pay for our own just to be on the safe side? Lorikat
  • mp327
    mp327 Member Posts: 4,440 Member
    #7
    Lorikat said:

    Scans or not?
    I was told at my last check up that INSURANCE will no longer pay for a scan every 3 or 6 months. I left wondering if this is a good thing? Should we pay for our own just to be on the safe side? Lorikat

    Scans
    The protocol for follow-up scans has definitely changed. They are no longer recommended in the National Comprehensive Cancer Network's guidelines, except for cases of T3-4 tumors or node positive cases. Insurance companies know these guidelines, believe you me, which is why it is so easy for them to deny approval for follow-up scans. Also, with all of the hype about radiation exposure, it is easy to justify such denials, both by ins. co's. and doctors. We all have different doctors. Mine just happens to be a believer in scans. I am over 4 years out now and he already has me scheduled for one in February, 6 months after my last one. He intends to do this until I reach the 5-year mark and is monitoring me for liver and lung mets, as well as recurrence. I have a spot on my liver and granuloma in both lungs. All are thought to be benign, but he is watching them closely. I may someday be dealing with another cancer caused by the additional radiation exposure, but who knows. I do know that having the scans gives me peace of mind. It's a catch-22, I suppose.
  • 7243
    7243 Member Posts: 249 Member
    #8
    Thank you!
    Thank you for your support ... I can always come to this site and be heard and immediately supported. That matters and means so much to me.

    I'm really struggling with this whole process. Two years out from diagnosis and I'm pretty depressed and can't seem to put my life back together. I go though the motions and hope that one of these days the outside will be congruent with my inside heart. I'm struggling with so much loss; I was healthy up to the day I got "the call", I had an awful experience with the healthcare delivery system and the physicians in it (huge loss and something that hindered my ability to heal ... doubting my stage and finding gaps between what I was told by physicians and what they documented "no worries" you have a great prognosis and "suspicious nodes" etc. in record ... ), I've lost my physical (vaginal stenosis) and emotional ability for sexual intimacy with myself as a woman (the who I was and am sexually) and with my husband ... intercourse is not possible (I know it is not the only way of being close and intimate, but that goes back to who I am now as a woman ... non-functional vagina, menopause, etc.), and I feel disconnected from myself as a human being and so on ... family members not there through treatment, blah, blah, my mortality.

    I am stuck and trying to get my life back in some way ... I know in a different way because I can't go back to "BD" ... before diagnosis.

    And so ... everyday I get up and try again. I can give advice here, however I can not hear my own voice in my heart cheering myself on ....

    Okay ... thank you again for doing what I can not seem to do for myself ... yet.

    xoxoxo
  • Marynb
    Marynb Member Posts: 1,118
    #9
    mp327 said:

    Scans
    The protocol for follow-up scans has definitely changed. They are no longer recommended in the National Comprehensive Cancer Network's guidelines, except for cases of T3-4 tumors or node positive cases. Insurance companies know these guidelines, believe you me, which is why it is so easy for them to deny approval for follow-up scans. Also, with all of the hype about radiation exposure, it is easy to justify such denials, both by ins. co's. and doctors. We all have different doctors. Mine just happens to be a believer in scans. I am over 4 years out now and he already has me scheduled for one in February, 6 months after my last one. He intends to do this until I reach the 5-year mark and is monitoring me for liver and lung mets, as well as recurrence. I have a spot on my liver and granuloma in both lungs. All are thought to be benign, but he is watching them closely. I may someday be dealing with another cancer caused by the additional radiation exposure, but who knows. I do know that having the scans gives me peace of mind. It's a catch-22, I suppose.

    Thanks,Martha
    So, I am seen at a very reputable hospital and I know they strictly follow guidelines and only ues "evidence based" medicine. I don't think doctors the have the freedom to individually decide. I have not had post treatment scans for this cancer or for the other cancer that I had major surgery for weeks after treatment for the anal cancer. So, I have double trouble, so to speak. I also have seveal lesions on my liver. I would love some reassurance from scans. Not sure what to do here. I am a person that has had many, many scans to my abdomen in my life from fertility treatments and sometimes I wonder .........

    From reading the posts here, it seems like I may be th e only one on the board with no post treatment scans.......not sure what to do.
  • mp327
    mp327 Member Posts: 4,440 Member
    #10
    Marynb said:

    Thanks,Martha
    So, I am seen at a very reputable hospital and I know they strictly follow guidelines and only ues "evidence based" medicine. I don't think doctors the have the freedom to individually decide. I have not had post treatment scans for this cancer or for the other cancer that I had major surgery for weeks after treatment for the anal cancer. So, I have double trouble, so to speak. I also have seveal lesions on my liver. I would love some reassurance from scans. Not sure what to do here. I am a person that has had many, many scans to my abdomen in my life from fertility treatments and sometimes I wonder .........

    From reading the posts here, it seems like I may be th e only one on the board with no post treatment scans.......not sure what to do.

    Mary--
    I would suggest having a frank discussion with your doctor and ask why you have had no post-treatment scans. Perhaps your history with all the scans for fertility treatment has played a role in your doctor's decision not to have you scanned. I would definitely ask.
  • mp327
    mp327 Member Posts: 4,440 Member
    #11
    7243 said:

    Thank you!
    Thank you for your support ... I can always come to this site and be heard and immediately supported. That matters and means so much to me.

    I'm really struggling with this whole process. Two years out from diagnosis and I'm pretty depressed and can't seem to put my life back together. I go though the motions and hope that one of these days the outside will be congruent with my inside heart. I'm struggling with so much loss; I was healthy up to the day I got "the call", I had an awful experience with the healthcare delivery system and the physicians in it (huge loss and something that hindered my ability to heal ... doubting my stage and finding gaps between what I was told by physicians and what they documented "no worries" you have a great prognosis and "suspicious nodes" etc. in record ... ), I've lost my physical (vaginal stenosis) and emotional ability for sexual intimacy with myself as a woman (the who I was and am sexually) and with my husband ... intercourse is not possible (I know it is not the only way of being close and intimate, but that goes back to who I am now as a woman ... non-functional vagina, menopause, etc.), and I feel disconnected from myself as a human being and so on ... family members not there through treatment, blah, blah, my mortality.

    I am stuck and trying to get my life back in some way ... I know in a different way because I can't go back to "BD" ... before diagnosis.

    And so ... everyday I get up and try again. I can give advice here, however I can not hear my own voice in my heart cheering myself on ....

    Okay ... thank you again for doing what I can not seem to do for myself ... yet.

    xoxoxo

    7243
    I am on three different support sites and am very good at encouraging people. But if it helps you to know this, some days I struggle too. I think it's just part of the package.
  • 7243
    7243 Member Posts: 249 Member
    #12
    Dog Girl said:

    Getting stressed
    Ah yes, our friend, Scanxiety. My followup is exactly as yours has been and I am 3+ years post tx. My insurance only covered one PET scan after tx and I was considering paying the difference between a CT scan and a PET scan out of my pocket, but when I asked my chemo dr. what he thought, he said he thought CT scans would be fine. And I think the recommendations for followup have even changed to that (CTs instead of multiple PETs) since I underwent tx in 2009.

    My understanding is that if there is a reoccurance, it is generally in the same location as the initial tumor and the DREs and anoscopy will check that out. The CT scan of the chest, abdomen, pelvis which check for metz to the lungs or liver. And you are approaching the two year mark which from what I've been told and from what I've read is a real milestone. Not to say that it can't happen, but generally if you are going to have a reoccurance, it will be during the first two years post tx. May your test results be NED!

    Thank you Dog Girl!
    Thank you very much for your response ... Yes, I agree with all you've said and explained. I'm haning on for the 2 year point. My oncologist said she will "sigh a sigh of relief for me" at 2 years.

    Thank you again!

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