Welcome to the new Cancer Survivors Network website! Existing members can click HERE to review the changes and new features on CSN.

6 month check up after NED/update

Nana b
Nana b Member Posts: 3,030
edited March 2014 in Colorectal Cancer #1
Hello everyone, as most of you know, I just found out the I am NED and that I don't have to go back for a scan for another 6 months. My family thinks that is a long time to go without a check up, so thought I would ask my freinds here on the board what the norm is for a followup scan after your first NED results. I know I should be escatic with the NED news, but their concern has me thinking...........again.

Thank you!
****************************************************************************

I talked to my ONC and he told me that he was planning a blood test in 6 weeks to look at my CEA. That makes me feel better. He also mentoned that if I get pain on the right side and on my right shoulder I should call him because that is an indication of tumour activity in the liver.

Comments

  • Patteee
    Patteee Member Posts: 945
    What stage are/were you?
    What stage are/were you? And when did you finish chemo?
  • Nana b
    Nana b Member Posts: 3,030
    Patteee said:

    What stage are/were you?
    What stage are/were you? And when did you finish chemo?

    Stage 4, chemo stopped 5 weeks ago
    I had a 60% liver resection in April......to get the two mets that spread to my liver.
  • Patteee
    Patteee Member Posts: 945
    Nana b said:

    Stage 4, chemo stopped 5 weeks ago
    I had a 60% liver resection in April......to get the two mets that spread to my liver.

    ah yeah, 6 months out seems
    ah yeah, 6 months out seems long.
  • John23
    John23 Member Posts: 2,122
    Six months
    They say that on the average, it takes a cancer cell between one and a half
    to two years, to grow to a size that's big enough to identify as a cancer cell.

    If they don't see a growth today, they probably won't see it within six
    months from today, unless they overlooked something.

    Once a cancer has metastasized, the rate of growth can double. But
    even at that rate, six months would be about right.

    It always bothers me when an oncologist tells a patient that they're
    "NED"; that they are free of cancer. The onco has absolutely no idea
    if the patient still has cancer cells growing or not.

    The "industry" has set five years as the point that they can consider the
    specific cancer as being gone, if in all that time it hasn't surfaced again.
    Anything less than that, is a moot point.

    To me, it's a disgrace to give a patient a false notion, then crush the patient
    and the family a half dozen months later.

    Every one of us that has cancer worries daily, about every single sore,
    headache, cough, and pain. I have lumps come and go, and I die a bit with
    each event.

    If I have a hangnail, I swear it's cuticle cancer.

    Is it worth all the worry? I had my colon cancer operation a little
    over three years ago. I was stage 3c or 4, depending on the oncologist.

    I did not have chemo, radiation, or any other western medicine treatment,
    since they said that my wound did not heal within the time that chemo
    would have any real effect. It was six months after the operation that
    my wound finally stopped oozing, and healed enough to not soil.

    Since I had 7 nodes infected, they said it was more than likely
    throughout my entire body.

    I have worried every day since, and worrying has not helped. My last
    scan 6 months ago indicated some spots on my lung, but since there were
    no previous scans of that lung, they told me to wait at least six months
    for another scan. And aside from those curious unknown spots, there
    are no other signs.

    It means absolutely nothing. I could have cancer in the brain, lung, liver,
    anyplace; There simply isn't any way to tell unless it's big enough to see.

    Too many scans, equates to too much radiation exposure, adding to
    a problem we don't need.

    Enjoy life now. Get the scans when they say it's time for one, and
    deal with a problem when it happens.

    Otherwise you'll be like me.... grey, balding, fat and obnoxious.

    Smile, and look forward to each tomorrow. The next six months
    will go fast. So will the six months after that, and after that,
    and the years will fly by. Try to enjoy every one of them.


    (I am an avid advocate of Traditional Chinese Medicine, and have
    relied on herbal broths to stifle cancer cells. They told me that if
    I'm still here by now, it'll be by sheer luck alone.)
  • Buzzard
    Buzzard Member Posts: 3,043
    John23 said:

    Six months
    They say that on the average, it takes a cancer cell between one and a half
    to two years, to grow to a size that's big enough to identify as a cancer cell.

    If they don't see a growth today, they probably won't see it within six
    months from today, unless they overlooked something.

    Once a cancer has metastasized, the rate of growth can double. But
    even at that rate, six months would be about right.

    It always bothers me when an oncologist tells a patient that they're
    "NED"; that they are free of cancer. The onco has absolutely no idea
    if the patient still has cancer cells growing or not.

    The "industry" has set five years as the point that they can consider the
    specific cancer as being gone, if in all that time it hasn't surfaced again.
    Anything less than that, is a moot point.

    To me, it's a disgrace to give a patient a false notion, then crush the patient
    and the family a half dozen months later.

    Every one of us that has cancer worries daily, about every single sore,
    headache, cough, and pain. I have lumps come and go, and I die a bit with
    each event.

    If I have a hangnail, I swear it's cuticle cancer.

    Is it worth all the worry? I had my colon cancer operation a little
    over three years ago. I was stage 3c or 4, depending on the oncologist.

    I did not have chemo, radiation, or any other western medicine treatment,
    since they said that my wound did not heal within the time that chemo
    would have any real effect. It was six months after the operation that
    my wound finally stopped oozing, and healed enough to not soil.

    Since I had 7 nodes infected, they said it was more than likely
    throughout my entire body.

    I have worried every day since, and worrying has not helped. My last
    scan 6 months ago indicated some spots on my lung, but since there were
    no previous scans of that lung, they told me to wait at least six months
    for another scan. And aside from those curious unknown spots, there
    are no other signs.

    It means absolutely nothing. I could have cancer in the brain, lung, liver,
    anyplace; There simply isn't any way to tell unless it's big enough to see.

    Too many scans, equates to too much radiation exposure, adding to
    a problem we don't need.

    Enjoy life now. Get the scans when they say it's time for one, and
    deal with a problem when it happens.

    Otherwise you'll be like me.... grey, balding, fat and obnoxious.

    Smile, and look forward to each tomorrow. The next six months
    will go fast. So will the six months after that, and after that,
    and the years will fly by. Try to enjoy every one of them.


    (I am an avid advocate of Traditional Chinese Medicine, and have
    relied on herbal broths to stifle cancer cells. They told me that if
    I'm still here by now, it'll be by sheer luck alone.)

    CEA for me @ 3 Months intervals,,,,
    and no scans at all unless my CEA goes up......every 3 mo for 2 years then every 6 months for 2 years then 1 more at the end of the 5th year and its over completelyyyyyyyy.
  • robinvan
    robinvan Member Posts: 1,012
    CT Scans
    I think I have been pretty steady at 6 months since originally being NED in April '05. The CT Scan will be focused mainly on your liver, I would also have a chest X-Ray every 6 months or so and bloodwork.

    Don't let this dampen your sense of good health. YOU ARE NED!! Ha-Le-Lu-ia!

    Be well... Rob; in Vancouver
  • Annabelle41415
    Annabelle41415 Member Posts: 6,712 **
    Scans
    I just had my first scan since diagnosis in December of 2008. She said now every six months for me, but I only had the rectum cancer and just finished "mop up chemo". Not to diminish your families concern, but they are not your doctor and your doctor has been a doctor for many years. Don't let this wonderful news diminish what should be a wonderful news event for you. Congratulations and let your doctor do the "doctoring." I'm happy for you.

    Kim
  • Nana b
    Nana b Member Posts: 3,030

    Scans
    I just had my first scan since diagnosis in December of 2008. She said now every six months for me, but I only had the rectum cancer and just finished "mop up chemo". Not to diminish your families concern, but they are not your doctor and your doctor has been a doctor for many years. Don't let this wonderful news diminish what should be a wonderful news event for you. Congratulations and let your doctor do the "doctoring." I'm happy for you.

    Kim

    ....then I'm going shopping! lol
    My shopping habits have sure changed since this diagnosis, seems that I now buy what I need for the present or not at all....my husband says, "I have always bought for today, not a bad way of thinking...my socks have holes in them, Get Me Some Socks, Woman!" Funny guy!
  • PGLGreg
    PGLGreg Member Posts: 731
    Too long.
    I think 6 months is too long to go without a checkup with blood tests, but not necessarily too long to go without a scan. Scans involve considerably more radiation than simple X-rays, so they have some risk of their own. I had only a stage 2 cancer, but after 4 years being NED, I'm still getting a checkup with blood tests, including CEA, every 3 months (and a CT scan every year).
  • jscho
    jscho Member Posts: 62
    I worry too
    I'm also worried about being scanned every six months since my tumor was a high grade adenocarcinoma with tumor budding evident, 4 lymph nodes were positive, and NO CEA test was done prior to surgery. My cancer must have grown quickly since I'd had a colonscopy 4 years earlier with no polyps or dysplasia found. I have no idea whether CEA is a good marker for me, so it seems imprudent to just go with bloodwork. On the other hand, I know that CT scans involve a fair amount of radiation, and I've already had 3 scans this year.

    This is an issue I will discuss with my oncologist when I go for my CT scan report and bloodwork next week now that I have completed the 12 rounds of adjuvant FOLFOX.

    Best,
    Jeremy
  • Betsydoglover
    Betsydoglover Member Posts: 1,248
    Scan interval when NED
    Hi Nana -

    I think given that you are Stage IV (like me) that at this point 6 months sounds like a long time.

    I was scanned every 3 months, then every 4 and then finally we went to almost 6 (which is when my recurrence happened - 3 years off chemo). At this point, 4.5 years from diagnosis, 6+ months since lung resection, we are going to monitor me with PET scans every 3 months (and only do CT's if something is suspicious). [We are doing this because PET has always been good for me and I have had 20 diagnostic CT's since 5/2005 and we are trying to limit radiation.]

    Good luck. Personally I would push for scans at least every 4 months for at least a year, maybe 2 and then start stretching them out.

    Betsy
    diagnosed Stage IV, liver met, 5/05
    6 cycles Xeloda, oxaliplatin/ Avastin
    solitary lung nodule, 11/08
    thorascopic wedge resection, 4/09
    6 cycles Xeloda / Avastin
    Currently on the "Avastin for a year or perhaps forever" plan!
  • Nana b
    Nana b Member Posts: 3,030

    Scan interval when NED
    Hi Nana -

    I think given that you are Stage IV (like me) that at this point 6 months sounds like a long time.

    I was scanned every 3 months, then every 4 and then finally we went to almost 6 (which is when my recurrence happened - 3 years off chemo). At this point, 4.5 years from diagnosis, 6+ months since lung resection, we are going to monitor me with PET scans every 3 months (and only do CT's if something is suspicious). [We are doing this because PET has always been good for me and I have had 20 diagnostic CT's since 5/2005 and we are trying to limit radiation.]

    Good luck. Personally I would push for scans at least every 4 months for at least a year, maybe 2 and then start stretching them out.

    Betsy
    diagnosed Stage IV, liver met, 5/05
    6 cycles Xeloda, oxaliplatin/ Avastin
    solitary lung nodule, 11/08
    thorascopic wedge resection, 4/09
    6 cycles Xeloda / Avastin
    Currently on the "Avastin for a year or perhaps forever" plan!

    btw
    I talked to my ONC and he told me that he was planning a blood test in 6 weeks to look at my CEA. That makes me feel better. He also mentoned that if I get pain on the right side and on my right shoulder I should call him because that is an indication of tumour activity in the liver.