Fly Little Bird

MAliceR
MAliceR Member Posts: 98
in Colorectal Cancer #1

A couple weeks ago I had my regular CT scan and CEA tumor test. The CT scan came back clear and my tumor marker is staying stable. I finished chemo on July 4th. It has been just about 18 months since they found my small recurrence. In that time I have had major surgery to remove the tiny little less than 1/2 inch recurrence and 6 months of very aggressive chemo. Right now, this minute I am cancer free. So I saw my oncologist yesterday and she tells me that becasue of the kind of recurrence I had, not attached to an organ, not having treaveled, no celular change in the type of cancer, etc. she feels I have good odds this time. Of course she doesn't have a crystal ball and I have had a recurrence, but not as aggressive as if my recurrence would have been more severe. Anyway, she tells me she is ready to cut back on the scans and tests. She is going to schedule a colonoscopy for this summer, just to be sure there is nothing unexpected, and my tumor marker blood work every 4 months, but unless it begins to show concern, no CT scans again for a year. A YEAR? REALLY? In 4 years I haven't made a year between anything. A year seems like a lifetime. I can't wrap my head around a year. I trust my Dr. after all she has gotten me this far and honestly don't feel she would take this route if she wasn't confident, but really? A YEAR? I came away feeling like I have been kicked out of the nest and told to fly before my wings are formed. I have lived nothing but tests, surgery, treatment, more tests, more surgery, treatments, more tests....for 4 years, I honestly can't remember living any other way. I also feel that when I am having those regular tests I am somehow being proactive and doing something. Cancer takes the control out of your life, so anything you are doing to feel you are controling something helps. So now I have to figure out how to manage and not be scared every minute that something is being missed and found too late. Don't get me wrong, I know I am blessed to have a chance at more life. I am aware how fortunate I am to still be alive today. 4 years ago they did't give me much of a chance, but here I am. Life is a gift. Now I have to try to figure out how to let cancer go a bit. I am seeing a cancer counselor regularly and we will work on it, but I have decided the emotions that go along with this disease are nearly as bad as the disease itself. Here I should be jumping up and down with great news and it is overshadowed with fear. I am not sure this little bird is quite ready to fly solo. 

Comments

  • Helen321
    Helen321 Member Posts: 1,459 Member
    #2
    I had a recurrence and did

    I had a recurrence and did the major surgery and my doctor said the same thing with an explanation that I found acceptable.  Since I am cancer free, she wants me to stay that way and that stuff that you drink to take a scan plus the scan itself, is toxic and not at all good for you to do even yearly so once a year it is.  You'll be okay.  At first it's a little scary but then suddenly as one test and then the next comes back clean, you start to feel better.  At first though you go into crazy mode.  I never ate so many "antioxidants" in my life out of worry.  I was trying to guarantee my clean scan.  Now I'm on year two, my next scan is July and I'm relaxed (until about two weeks before the test).  A good way to feel okay is to do each test 6 months apart with colonoscopy scheduled say January and scan scheduled for July with bloodwork every quarter although I'm able to do mine biannually now.  This way you feel like you are doing something.  I also saw a cancer counselor who helped me a lot.  In the beginning I actually needed antianxieties.  I don't need them any more.  

  • MAliceR
    MAliceR Member Posts: 98
    #3
    Helen321 said:

    I had a recurrence and did

    I had a recurrence and did the major surgery and my doctor said the same thing with an explanation that I found acceptable.  Since I am cancer free, she wants me to stay that way and that stuff that you drink to take a scan plus the scan itself, is toxic and not at all good for you to do even yearly so once a year it is.  You'll be okay.  At first it's a little scary but then suddenly as one test and then the next comes back clean, you start to feel better.  At first though you go into crazy mode.  I never ate so many "antioxidants" in my life out of worry.  I was trying to guarantee my clean scan.  Now I'm on year two, my next scan is July and I'm relaxed (until about two weeks before the test).  A good way to feel okay is to do each test 6 months apart with colonoscopy scheduled say January and scan scheduled for July with bloodwork every quarter although I'm able to do mine biannually now.  This way you feel like you are doing something.  I also saw a cancer counselor who helped me a lot.  In the beginning I actually needed antianxieties.  I don't need them any more.  

    Thanks Helen,
    I am sure I

    Thanks Helen,

    I am sure I will find a balance eventually, it is just a bit of a new game plan. Congratulations on being cancer free. I am guessing like you, as I get to each test I will be a little crazy for a week or two. I plan to keep my cancer counselor. Luckily it is covered by my insurence for as many sessions as I need. I think I will need them for quite awhile. 

    Mary

  • Momof2plusteentwins
    Momof2plusteentwins Member Posts: 509 Member
    #4
    I still do quarterly scans

    I am 3 years in June from NED, I have port flushed with CEA every 6 to 8 weeks and quarterly CTs.  I know contrast fluid is not good on the body butt to me it's way better than cancer growing and not catching it for a year.  Starting out at stage IV and feeling like I didn't do something faster to catch it before it was stage IV I'm not going to wait for once a year scans.  At least not yet.  Maybe after 5 years I will be ready for twice a year CTs butt for now and piece of mind that I am keeping an eye on this quarterly is the way for me.

    Sandy

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #5
    Have you checked the scanning guidelines?

    I know they're online somewhere.  I feel like a year is a very long time in between scans, esp once you've had a recurrence.  Everyone I know has scans much more frequently than that.

     

Discussion Boards