My sister has Stage 4

LynnKT
LynnKT Member Posts: 47
My sister had outpatient surgery a few weeks ago to remove a tumor from her colon. At the time, the surgeon was optimistic that the cancer was caught early and that things would be fine. She found out just a few days ago that the cancer is most likely Stage 4. They are going to do a more exploratory surgery in a few weeks to determine what is going on. My question to all of you who may have gone through something like this is how can the doctor stage the cancer before performing the planned surgery? They don't know yet if it has spread to the lymph nodes, etc. Is it because the tumor they removed may have certain characteristics that signal aggressiveness?

Thanks!

Comments

  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    Too many variables
    to give a correct answer.

    You are going to have to ask the oncologist/surgeon why they think the dx is stage 4.

    My dx was done from scans, others from surgery. Tumor type, number of positive local lymph nodes, any spread beyond local nodes...

    Guessing what it is that makes her stage 4 at this point would be just that; guessing.

    Very sorry to hear the news,

    Blake
  • karguy
    karguy Member Posts: 1,020 Member
    I'm sorry
    I'm sorry to hear about your sister,but with out testing lymph nodes,and doing scans,and tests,I don't see how they could stage it.Ask the doctor how they came up with that dx,and maybe you should see about checking with another doctor.Just like buckwirth said they are probably guessing.Good luck.
  • k1
    k1 Member Posts: 220 Member
    how is it possible?
    If they made the initial diagnosis after a colonoscopy and scan and all they saw was the tumor in the colon...

    If they removed the tumor and surrounding lymph nodes and a pathologist evaluated all the tissue and determined how far the colon penetrated into the colon wall, and if any evidence was there that it had not penetrated into the lymph nodes...

    Then you get a dx that all the cancer is in the colon and the numbers on your pathology report are T N O numbers. They do the pathology report shortly after your surgery and that is what the initial staging is usually based on.

    Why would they change it to Stage 4 a short time later? Possibly based on subsequent scans and/or CEA marker. Usually CEA marker drops to a significantly lower number if all cancer is removed. If CEA marker doesn't drop, or drops then starts creeping up a short time later, or if you have a scan and they see something new they didn't see before, that's how the staging could change in a short time. Stage 4 indicates they are seeing something on a scan and/or CEA marker is going up instead of down.

    I have been through all this myself, being told it was all removed and I was Stage 2A and told I wouldn't be likely to have a recurrence, only to have suspicious "lesions" on a MRI scan of my liver months later. No doctor can ever tell 100 percent that when you had the original cancer a few cells hand't escaped into your bloodstream and lodged elsewhere without being detected. No one knows until something shows up on a scan.

    So sorry for your loved one. I also know how firsthand this type diagnosis so soon after they said they got it all is disappointing. Hang in there! There are still a lot of new treatments for Stage 4 to extend life.

    K1
  • LynnKT
    LynnKT Member Posts: 47
    k1 said:

    how is it possible?
    If they made the initial diagnosis after a colonoscopy and scan and all they saw was the tumor in the colon...

    If they removed the tumor and surrounding lymph nodes and a pathologist evaluated all the tissue and determined how far the colon penetrated into the colon wall, and if any evidence was there that it had not penetrated into the lymph nodes...

    Then you get a dx that all the cancer is in the colon and the numbers on your pathology report are T N O numbers. They do the pathology report shortly after your surgery and that is what the initial staging is usually based on.

    Why would they change it to Stage 4 a short time later? Possibly based on subsequent scans and/or CEA marker. Usually CEA marker drops to a significantly lower number if all cancer is removed. If CEA marker doesn't drop, or drops then starts creeping up a short time later, or if you have a scan and they see something new they didn't see before, that's how the staging could change in a short time. Stage 4 indicates they are seeing something on a scan and/or CEA marker is going up instead of down.

    I have been through all this myself, being told it was all removed and I was Stage 2A and told I wouldn't be likely to have a recurrence, only to have suspicious "lesions" on a MRI scan of my liver months later. No doctor can ever tell 100 percent that when you had the original cancer a few cells hand't escaped into your bloodstream and lodged elsewhere without being detected. No one knows until something shows up on a scan.

    So sorry for your loved one. I also know how firsthand this type diagnosis so soon after they said they got it all is disappointing. Hang in there! There are still a lot of new treatments for Stage 4 to extend life.

    K1

    Thanks
    Thanks for your responses. I have a question, though. I am a breast cancer survivor of 2 years, and perhaps I should know this answer already. When you refer to CEA markers, what do you mean exactly? Do they sometimes give an early stage of a cancer based solely on the characteristics of the removed tumor? So far, they haven't gone in and done any exploratory surgery on my sister. That is scheduled in a few weeks.
  • k1
    k1 Member Posts: 220 Member
    LynnKT said:

    Thanks
    Thanks for your responses. I have a question, though. I am a breast cancer survivor of 2 years, and perhaps I should know this answer already. When you refer to CEA markers, what do you mean exactly? Do they sometimes give an early stage of a cancer based solely on the characteristics of the removed tumor? So far, they haven't gone in and done any exploratory surgery on my sister. That is scheduled in a few weeks.

    No, the early diagnosis and
    No, the early diagnosis and staging would have been done by the pathologist report examining the colon tumor that was removed during the initial surgery.

    K1
  • keystone
    keystone Member Posts: 134 Member
    LynnKT said:

    Thanks
    Thanks for your responses. I have a question, though. I am a breast cancer survivor of 2 years, and perhaps I should know this answer already. When you refer to CEA markers, what do you mean exactly? Do they sometimes give an early stage of a cancer based solely on the characteristics of the removed tumor? So far, they haven't gone in and done any exploratory surgery on my sister. That is scheduled in a few weeks.

    Hi Lynn
    Sorry to hear about your sister. The CEA is a marker in your blood that they look at in colon cancer. Different cancers have different markers. Normal for non smokers is around 0-2.5 and smokers normal can go a little higher. Not all peoples CEA is a reliable way of diagnosing where they are in cancer. My husbands CEA never went above .7 with known rectal cancer. There are a lot of doctors that rely heavily on this so I would ask your sister if that is why they are thinking a higher stage. I agree with the other responces though that the type of cancer is not enough to up-stage the cancer. Let us know what she finds out. If her Dr. does not give satisfing answers please encourage her to get a second opinion. Stephanie
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    LynnKT said:

    Thanks
    Thanks for your responses. I have a question, though. I am a breast cancer survivor of 2 years, and perhaps I should know this answer already. When you refer to CEA markers, what do you mean exactly? Do they sometimes give an early stage of a cancer based solely on the characteristics of the removed tumor? So far, they haven't gone in and done any exploratory surgery on my sister. That is scheduled in a few weeks.

    Exploratory surgery?
    First off I'm sorry about your sister. The CEA count is in quite a few of us an indicator on how our cancer is digressing or progressing, it is used for colon cancer patients.
    I was diagnosed stage IV from my CEA count and ct scan showing spots in liver in the beginning my CEA was over two thousand. They did a liver biopsy to confirm the liver cancer.
    I had no surgeries until months later to remove the tumors in various spots.
    I'm not understanding the exploratory surgery?
    Winter Marie
  • LynnKT
    LynnKT Member Posts: 47

    Exploratory surgery?
    First off I'm sorry about your sister. The CEA count is in quite a few of us an indicator on how our cancer is digressing or progressing, it is used for colon cancer patients.
    I was diagnosed stage IV from my CEA count and ct scan showing spots in liver in the beginning my CEA was over two thousand. They did a liver biopsy to confirm the liver cancer.
    I had no surgeries until months later to remove the tumors in various spots.
    I'm not understanding the exploratory surgery?
    Winter Marie

    My sister had outpatient
    My sister had outpatient surgery 2 weeks ago to remove the tumor only. The surgeon did not remove any lymph nodes because he thought that it wasn't necessary. Now after receiving the full pathology report on the tumor, he is saying that he needs to go in for a more in-depth surgery. I'm assuming that means that he will remove lymph nodes, etc.
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    LynnKT said:

    My sister had outpatient
    My sister had outpatient surgery 2 weeks ago to remove the tumor only. The surgeon did not remove any lymph nodes because he thought that it wasn't necessary. Now after receiving the full pathology report on the tumor, he is saying that he needs to go in for a more in-depth surgery. I'm assuming that means that he will remove lymph nodes, etc.

    Ahhh
    Got ya, did they do another ct or pet scan?
    Winter Marie
  • Psalm 91
    Psalm 91 Member Posts: 5
    LynnKT said:

    My sister had outpatient
    My sister had outpatient surgery 2 weeks ago to remove the tumor only. The surgeon did not remove any lymph nodes because he thought that it wasn't necessary. Now after receiving the full pathology report on the tumor, he is saying that he needs to go in for a more in-depth surgery. I'm assuming that means that he will remove lymph nodes, etc.

    Hi Lynn
    I'm so sorry to hear about your sister. Perhaps her CT Scans and Ultrasounds didn't clearly show any metastasis before her surgery and the surgeon was confident that she only had the colon tumor. My scans didn't show anything either. I was fortunate that when I had a colonoscopy, it showed that my colon was almost obstructed so they knew that I might end up with a colostomy, etc. and would need more than just an outpatient surgery. The cancer was in five places including the liver and lymph nodes but though my surgeon probably thought I wouldn't survive, he was VERY aggressive for a general surgeon and even removed the tumors on my liver. I didn't have to have a colostomy and I also have a great oncologist and so I'm blessed to still be here. Just as another said, my CEA also did not ever go over 7, but they keep a close eye on it anyway.

    I hope that your sister will not actually be in stage IV but if she is, I pray she will have a good surgeon and oncologist. Most of all, as my doctors told me, a good attitude is very important. So please tell her to always try to have a good attitude.