who determines who is a high risk patient

gerryo
gerryo Member Posts: 50
in Colorectal Cancer #1
My husband was dx'd in June 2008. Stage 1, NO, MO. Had a resection. CEA's were in normal range. Everything I have read states if you are considered a high risk you should have a CT scan in 1 year. (Which he did not) What we want to know is who or what determines who is considered "high risk". We would welcome all comments. Thanks for you help


Gerry

Comments

  • Nana b
    Nana b Member Posts: 3,030 Member
    #2
    Stage 1 - that is so much better the the other stages.
    Probably Stage III and IV. Once it's in the lymph nodes and other organs, you have so a bigger fight!
  • gerryo
    gerryo Member Posts: 50
    #3
    Nana b said:

    Stage 1 - that is so much better the the other stages.
    Probably Stage III and IV. Once it's in the lymph nodes and other organs, you have so a bigger fight!

    He had since been dx'd with
    He had since been dx'd with stage IV. He thinks if he had had a CT after the first year (when he was stage I) they would have found something. Protocol says it usually done with high risk patient. What we wanted to know if what the definitation of a high risk patient. thanks.

    gerry
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #4
    gerryo said:

    He had since been dx'd with
    He had since been dx'd with stage IV. He thinks if he had had a CT after the first year (when he was stage I) they would have found something. Protocol says it usually done with high risk patient. What we wanted to know if what the definitation of a high risk patient. thanks.

    gerry

    Before having been told he
    Before having been told he was stage IV in your second post, I would have said, that a colonoscopy would have been in order. That a CT scan, with the radiation would have been a secondary. I do believe that high risk would be III and over, but your husband's case shows this not to be true, there are always exceptions to the rule, and sometimes maybe the onc should veer on the side of the exception. I'm so sorry for this, no one, no one, wants to be in the stage IV club, if I could buy my way out of stage IV, I would have been on the streets begging for money.
    Tears, I have tears for you both, for the stage IV, for the idea that maybe a cancer causing CT scan would have prevented this. I'm sorry, but you know, he can survive stage IV, we all have that chance, that possibility, don't feel like you have to give up on his life, you don't, stage IV is but a number, a number that we have to do more chemo, sometimes more radiation, sometimes if you're religious, more praying, whatever it takes, whatever it takes to continue on.
    You will be in my thoughts, your hopes are my hopes for your future, tell your husband to dream on and you as well, stage IV is NOT a death sentence, it's just a "we have to deal with a bit more".
    Love, hugs and good thoughts and vibes your way,
    Winter Marie
  • gerryo
    gerryo Member Posts: 50
    #5
    herdizziness said:

    Before having been told he
    Before having been told he was stage IV in your second post, I would have said, that a colonoscopy would have been in order. That a CT scan, with the radiation would have been a secondary. I do believe that high risk would be III and over, but your husband's case shows this not to be true, there are always exceptions to the rule, and sometimes maybe the onc should veer on the side of the exception. I'm so sorry for this, no one, no one, wants to be in the stage IV club, if I could buy my way out of stage IV, I would have been on the streets begging for money.
    Tears, I have tears for you both, for the stage IV, for the idea that maybe a cancer causing CT scan would have prevented this. I'm sorry, but you know, he can survive stage IV, we all have that chance, that possibility, don't feel like you have to give up on his life, you don't, stage IV is but a number, a number that we have to do more chemo, sometimes more radiation, sometimes if you're religious, more praying, whatever it takes, whatever it takes to continue on.
    You will be in my thoughts, your hopes are my hopes for your future, tell your husband to dream on and you as well, stage IV is NOT a death sentence, it's just a "we have to deal with a bit more".
    Love, hugs and good thoughts and vibes your way,
    Winter Marie

    He did have a colonoscopy
    He did have a colonoscopy after 1 year and it was good. We thank you for you words of comfort. I believe we will overcome this. He has been on a long road. Surgery last August, sepsis, icu for 35 days, and a fistula. When he came home from the hospital he was on a wound vac, tpn and npo.
    Since then he has had a skin graft and another enternal fistula that a drain had to be put in for a couple of weeks. He is now at the point where all doctors seem he can start chemo. I know he will never be cured, but I just have a feeling he is not going anywhere for a long, long time. Thanks again for your kindness.


    Gerry
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #6
    gerryo said:

    He did have a colonoscopy
    He did have a colonoscopy after 1 year and it was good. We thank you for you words of comfort. I believe we will overcome this. He has been on a long road. Surgery last August, sepsis, icu for 35 days, and a fistula. When he came home from the hospital he was on a wound vac, tpn and npo.
    Since then he has had a skin graft and another enternal fistula that a drain had to be put in for a couple of weeks. He is now at the point where all doctors seem he can start chemo. I know he will never be cured, but I just have a feeling he is not going anywhere for a long, long time. Thanks again for your kindness.


    Gerry

    Gerry
    He's been through a lot, a lot of unexpected, and he has come through this. He's done well, truly, he's done very well.
    Keep us informed as to his progress, and please, ask questions, ask his questions, there are so many here that have been through so much, that minds can be eased, goodness knows, when I got my "death sentence" a year ago, I was ready to give up, now seven months after my "due date" I'm still here, and will probably be here for a lot more years, are due to good oncologists, hope, and friends on this web site that don't give up on you;.
    Ask questions, no matter how small, that's the only way to learn about this cancer hell that we have to deal with. There will be sometimes differencing of opinions, but you both can sort through them.
    Caringly,
    Winter Marie
  • Nana b
    Nana b Member Posts: 3,030 Member
    #7
    herdizziness said:

    Gerry
    He's been through a lot, a lot of unexpected, and he has come through this. He's done well, truly, he's done very well.
    Keep us informed as to his progress, and please, ask questions, ask his questions, there are so many here that have been through so much, that minds can be eased, goodness knows, when I got my "death sentence" a year ago, I was ready to give up, now seven months after my "due date" I'm still here, and will probably be here for a lot more years, are due to good oncologists, hope, and friends on this web site that don't give up on you;.
    Ask questions, no matter how small, that's the only way to learn about this cancer hell that we have to deal with. There will be sometimes differencing of opinions, but you both can sort through them.
    Caringly,
    Winter Marie

    Need Stage 1 input
    Hmmm, maybe if they have the gene that says it runs in a family or if you have a relative that has a colorectal cancer. I have not heard the high risk question since I have been on this board but maybe some Stage 1 folks can elaborate on their treatments.

    Maybe changing your subject to Need Stage 1 input.

    Keep fighting!
  • John23
    John23 Member Posts: 2,122 Member
    #8
    Gerry -
    Re:
    "who or what determines who is considered "high risk". "

    Probably the insurance companies.

    Cancer cells take time to grow, and they can't be identified as
    cancer until they grow large enough to be identified. That usually
    takes 1.5 to 2 years to occur. So getting -frequent- scans or a
    colonoscopy generally doesn't provide too much benefit.

    Many oncologists and surgeons are denouncing the frequent
    scheduling of scans and mammograms, since they do not provide
    the benefit that they once thought they might. And too much
    accumulated radiation doesn't help the cause, either.

    Cancer that is missed in scans, etc., are usually found during
    invasive surgery instead. It's never a pleasant surprise, and
    we always feel blind-sided, but that's the nature of cancer, and
    the nature of our limited technology with isolating cancer amid
    our other cells.

    The big push to label a human as being "high risk" anything
    should be looked at through cynical eyes. Anything to identify
    who might be at greater risk, regardless how moot, can raise
    insurance rates for that individual........

    (just sayin')

    Best of health to youse!

    John
  • colonblender
    colonblender Member Posts: 12
    #9
    Hi Gerry
    My husband was dx with stage 1 in 2009 and 15 months later he was stage 4 with liver mets had surgery since and finishing chemo, he was told then that he was at risk because young and the short period between dx and recurrence .hope this helps.Nedj
  • gerryo
    gerryo Member Posts: 50
    #10
    colonblender said:

    Hi Gerry
    My husband was dx with stage 1 in 2009 and 15 months later he was stage 4 with liver mets had surgery since and finishing chemo, he was told then that he was at risk because young and the short period between dx and recurrence .hope this helps.Nedj

    Did your husband have a ct
    Did your husband have a ct scan at the 1 year mark. My husband feels onc should have done this. The only indication that something was up was his cea started to elevate. At this point he was about 2 months shy of 2 years. Also, thanks for your reply and support.

    Gerry
  • kuastoi
    kuastoi Member Posts: 63
    #11
    Good question....
    Probably a number of ways to look at this.

    Things I think of are:

    stage at diagnosis
    history of previous cancer
    age at diagnosis
    family history of cancer, esp. colon
    history of inflammatory bowel disease
    smoking and drinking history
    additional medical issues (diabetes, immune compromised status etc.)

    risk obviously increases with the stage at diagnosis , but you are asking about your situation at stage 1, so I'd consider the rest and discuss with your doc.

    If you are at all concerned the you are high risk push for a discussion of your concerns with your primary doc and your oncologist - they'll probably agree if you are concerned and proceed with additional screening. If they are not approachable get a second opinion.

    That's my take anyway

    Tom
  • k1
    k1 Member Posts: 220 Member
    #12
    18 Q loss and MSS are considered high risk
    If they test a patient's tumors and find the characteristics are 18-Q loss or MSS instead of MSI, the patient is classified for high risk of recurrence. Patients usually only get their tumors tested for these characteristics only as part of a clinical trial. Those are two things that can result in being labeled high risk. There are probably others.
  • colonblender
    colonblender Member Posts: 12
    #13
    gerryo said:

    Did your husband have a ct
    Did your husband have a ct scan at the 1 year mark. My husband feels onc should have done this. The only indication that something was up was his cea started to elevate. At this point he was about 2 months shy of 2 years. Also, thanks for your reply and support.

    Gerry

    Hi Gerry
    my hubby did not follow a regular follo up schedule because 6 months after his colon surgery
    his CEA started rising and between 6 and 15 months he had a couple of ct scans and a pet scan and they found his liver met.all i know he was suppose to have the 1 year marc ct scan.
    Nedj

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