Norms for Scan

Annabelle41415
Annabelle41415 Member Posts: 6,742 Member
in Colorectal Cancer #1
What is the norm for scans, if you know. Know two people that had colorectal cancer (neither one of them post on this board). Jane found out she had cancer about the same time as me and also had surgery the same time as me. Betty found out about 9 months after me and had surgery 11 months after me. Both Jane and Betty (not their real names) never did mop up chemo. Neither see their surgeons anymore. I've had a colonoscopy last year, flex sig this year and colonoscopy next year. Neither one of them has to have a colonoscopy for 3-5 years. Jane or Betty don't go to oncologist only for blood tests. I'm having blood tests every six months and scans yearly. Are my doctors being too concerned and ordering tests not needed or are their doctors not really following through with normal schedule for treatment (glad I'm under such wonderful, caring doctors). I'm just thinking better early detection than just to say well scans looked good at 18 months so you are good to go. Just wondered what everyone else's schedule is. I'm thinking that my doctors are pretty much on protocol with treatment. Thanks for your input.

Kim

Comments

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #2
    Kim:)
    With all we go through, I feel it is better to be under "watch" than being cut loose for blood tests?

    Remember my stupidity about a year and a half ago, when I thought I was smart enough to monitor my blood work alone with no scans? (I had cancelled scans due to $$$)

    My bloodwork was good - my CEA was the best it ever was - and I had a raging tumor growing so big it embedded itself in my chest cavity very close to my spine, cut off my breathing, and had me doubled over in pain.

    5 wedge resections, 2 ribs removed, and one of the hardest fights of my life, a year later............

    Right now, I'm about every 3 to 4 month for bloodwork and CT...currently not doing PETs anymore, because my onc's protocol is different than my other one's was.

    Being "in the system" provides us at least some type of security blanket, and when we slip, we're that much further ahead.

    -Craig:)
  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    #3
    Stage matters
    1 or 2 and chemo may be optional. Follow-up could be spread out further as well.

    For 3 you could be followed closely for many years, and for 4 the follow-up never ends.

    What stage were your friends?
  • marqimark
    marqimark Member Posts: 242 Member
    #4
    Scans
    I had follow up colonoscopy one year after DX, about four months after the end of chemo. The onc said I wouldn't need another for three years because it was clear. Blood tests for CEA every three months, 9/22 will be my third CEA test.

    Sounds like your test schedule is normal to me. I like tests every three months because I am scared and need the reassurance that I am okay, or that I find out that I am not okay very early.....

    I hate being in this club, I hate that all of you are in this club, I hate that there are new members every day. AARRRGGGG!
  • plh4gail
    plh4gail Member Posts: 1,238 Member
    #5
    Hi Kim I was diagnosed 3C
    Hi Kim I was diagnosed 3C June 2010. Radiation/chemo pump July-Aug 2010, resection Oct 2010, and 6 month chemo till May 2011. I will have PET and CT at the end of this month. (PET was ordered by second opinion onc). Now that I am getting my new normals under control (fingers are crossed) I am starting back at re-gaining my strength in the gym, on the golf course, walking the dog....da da da da da...and changing my eating habits. I'm not sure yet about the next colonoscopy. I hated that!!!

    Love and hugs to you, gail
  • dorookie
    dorookie Member Posts: 1,731 Member
    #6
    Good Question
    Kim,

    Although I am stage 4 and have been NED for over 2 years I still get checked every 3 months with blood work and CT scan. My ONC has hinted about going for checks every 6 months but he always says its better to do every 3 months and he kind of like says it in a way to see what my reaction would be, and mine is always the same, I dont feel comfortable yet in waiting every 6 months. As far as what is normal I am guessing that depends on the staging. I wonder if I will be watched this closely for ever? As for colonoscopies, I had one a year after DX and was told to do it again in 3 years, well I am a bit late as it was due in May, so I need to get that done, but I like most just hate it, I hate the prep, but I will get it done.

    I do wonder about the accuracy of just doing a CT scan, but I am afraid a PET wont get authorized unless the CT scan picks something up. But I am a worry wart, seems I live to worry about the scans, almost to the point I dont really live my life, I worry to the extent that I usually convince myself the cancer is back, have the tests then find out its all clear, have a brief moment of what if the test is wrong, before I relax for a bit, then the worring and fear start all up again for the next set of test 3 months away, its a nasty cycle for me, one that is probably killing me or at least it is killing me having a somewhat normal life. Thats my life in a nut shell...


    HUGS
    Beth
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #7
    dorookie said:

    Good Question
    Kim,

    Although I am stage 4 and have been NED for over 2 years I still get checked every 3 months with blood work and CT scan. My ONC has hinted about going for checks every 6 months but he always says its better to do every 3 months and he kind of like says it in a way to see what my reaction would be, and mine is always the same, I dont feel comfortable yet in waiting every 6 months. As far as what is normal I am guessing that depends on the staging. I wonder if I will be watched this closely for ever? As for colonoscopies, I had one a year after DX and was told to do it again in 3 years, well I am a bit late as it was due in May, so I need to get that done, but I like most just hate it, I hate the prep, but I will get it done.

    I do wonder about the accuracy of just doing a CT scan, but I am afraid a PET wont get authorized unless the CT scan picks something up. But I am a worry wart, seems I live to worry about the scans, almost to the point I dont really live my life, I worry to the extent that I usually convince myself the cancer is back, have the tests then find out its all clear, have a brief moment of what if the test is wrong, before I relax for a bit, then the worring and fear start all up again for the next set of test 3 months away, its a nasty cycle for me, one that is probably killing me or at least it is killing me having a somewhat normal life. Thats my life in a nut shell...


    HUGS
    Beth

    Me Too, Beth
    Just finished up that thought process in the "Recurrence" chapter, finally finished it.

    After 3 times with Cancer now, it's still very hard for me to believe that the cancer is gone from my body and I won't recur again. People think that's silly, but I would say to them, "How many times have you had a recurrence? I've had 3."

    There is a realization that comes over you when you have had recurrence more than once. One of the reasons I'm feverishly trying to finish my book now - because I fear the next recurrence is already on my doorstep - just waiting to ring the bell and start this nightmare back over.

    I'm back in for scans and bloodwork the last week of Sept, so hopefully I'll get another 'hall pass' for another 3-4 months, but I worry more now than I ever have before.

    Here's hoping to good news for CP9 when I see you and collect a "Beth Hug." Mine are pretty good, too - you agree? Kathi says they are bear hugs, but I like 'em that way. I like to hear your heart beat close to mine, you know?

    -Craig
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #8
    Buckwirth said:

    Stage matters
    1 or 2 and chemo may be optional. Follow-up could be spread out further as well.

    For 3 you could be followed closely for many years, and for 4 the follow-up never ends.

    What stage were your friends?

    Two
    Both were stage two and went to completely difference hospitals.

    Kim
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #9
    Sundanceh said:

    Kim:)
    With all we go through, I feel it is better to be under "watch" than being cut loose for blood tests?

    Remember my stupidity about a year and a half ago, when I thought I was smart enough to monitor my blood work alone with no scans? (I had cancelled scans due to $$$)

    My bloodwork was good - my CEA was the best it ever was - and I had a raging tumor growing so big it embedded itself in my chest cavity very close to my spine, cut off my breathing, and had me doubled over in pain.

    5 wedge resections, 2 ribs removed, and one of the hardest fights of my life, a year later............

    Right now, I'm about every 3 to 4 month for bloodwork and CT...currently not doing PETs anymore, because my onc's protocol is different than my other one's was.

    Being "in the system" provides us at least some type of security blanket, and when we slip, we're that much further ahead.

    -Craig:)

    Scan
    Remember when you went through all that and when you waited on your scan. It was a very difficult time for you after finding out how big the tumor got and how you couldn't breath. So glad you are better now. It's been a long road for you. Sometimes doing more is better.

    Kim
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #10
    dorookie said:

    Good Question
    Kim,

    Although I am stage 4 and have been NED for over 2 years I still get checked every 3 months with blood work and CT scan. My ONC has hinted about going for checks every 6 months but he always says its better to do every 3 months and he kind of like says it in a way to see what my reaction would be, and mine is always the same, I dont feel comfortable yet in waiting every 6 months. As far as what is normal I am guessing that depends on the staging. I wonder if I will be watched this closely for ever? As for colonoscopies, I had one a year after DX and was told to do it again in 3 years, well I am a bit late as it was due in May, so I need to get that done, but I like most just hate it, I hate the prep, but I will get it done.

    I do wonder about the accuracy of just doing a CT scan, but I am afraid a PET wont get authorized unless the CT scan picks something up. But I am a worry wart, seems I live to worry about the scans, almost to the point I dont really live my life, I worry to the extent that I usually convince myself the cancer is back, have the tests then find out its all clear, have a brief moment of what if the test is wrong, before I relax for a bit, then the worring and fear start all up again for the next set of test 3 months away, its a nasty cycle for me, one that is probably killing me or at least it is killing me having a somewhat normal life. Thats my life in a nut shell...


    HUGS
    Beth

    Worry
    Oh my goodness, that is my middle name. I'm two months out from a scan and my stomach is in knots. This will be my first one year scan, usually it's been every six months. Glad that everything is going good for you and quit worrying LOL - easier said than done.

    Hugs! Kim
  • dorookie
    dorookie Member Posts: 1,731 Member
    #11
    Sundanceh said:

    Me Too, Beth
    Just finished up that thought process in the "Recurrence" chapter, finally finished it.

    After 3 times with Cancer now, it's still very hard for me to believe that the cancer is gone from my body and I won't recur again. People think that's silly, but I would say to them, "How many times have you had a recurrence? I've had 3."

    There is a realization that comes over you when you have had recurrence more than once. One of the reasons I'm feverishly trying to finish my book now - because I fear the next recurrence is already on my doorstep - just waiting to ring the bell and start this nightmare back over.

    I'm back in for scans and bloodwork the last week of Sept, so hopefully I'll get another 'hall pass' for another 3-4 months, but I worry more now than I ever have before.

    Here's hoping to good news for CP9 when I see you and collect a "Beth Hug." Mine are pretty good, too - you agree? Kathi says they are bear hugs, but I like 'em that way. I like to hear your heart beat close to mine, you know?

    -Craig

    I agree
    Craig your hugs are awesome and I cant wait to get mine! See you soon and you will have great news as I will to, got scans in Sept as well.

    HUGS
    Beth

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