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Why are tests so unreliable????

vchildbeloved
vchildbeloved Member Posts: 133
edited March 2014 in Colorectal Cancer #1
Hello, Been gone awhile. Working, working, working! I am a stage 3 colon cancer survivor; diagnosed April 08. A scan back in June 2010 revealed 2 small lesions on liver (1cm & 1.7cm). Doc at that time said he believed them to be blood vessels and wanted to just monitor them. Even though all bloodwork and CEA was good I did not feel comfortable with that suggestion. I sought the advice of other docs and insisted on other tests. August had a pet scan which showed nothing and then another CT Oct 11, 2010. Well, now it's 3 lesions, the report says one is "slightly more prominent now" and they are so concerned that I'm scheduled for a biopsy on Wed. Doc. says that it's a 50/50 chance that it could be metastasis from the colon cancer. How could this be when all tests thus far have been negative? I guess I'm angry with myself for not insisting on a biopsy back in June when these lesions, as he refers to them, first appeared. It's confusing because all bloodwork and CEA is still great. I can't sleep, and I'm having trouble not thinking the worse. Just needed to talk.

Thanks again for listening,
Val

Comments

  • Sundanceh
    Sundanceh Member Posts: 4,392
    Hey Valerie
    All of us, our doctors included, put way too much emphasis on the tests and the results. We should begin to think of them as a "possible indicator" - not the absolute, died in the wool, truth. Because, alot of times, the tests can be misleading. There is a thing called "False/Positive."

    The tests are just that - they are a tool - and unfortunately, the best tools that we have available in the year 2010.

    I've really learned over the last year, especially, that alot of my tests have been flat out wrong, or against what we think they should be.

    Examples:
    Pet Scans show uptake to the spots in question - surgery reveals benign growths.
    Sometimes PET shows a mass - but the CT did not see it.
    CEA levels are normal, way below normal, and yet Cancer running rampant inside your body.

    Just to name a few...

    I've learned to just use these as a measurement - and when we watch and wait and we see growth, then we ready to action.

    Biopsies are always good, but even those can be "hit or miss." I mean the technician might miss the area entirely, depending on tumor size - and right now, yours are still fairly small.

    And I've had biopsies tell me nothing, and yet I had an active 9cm tumor in my liver at one time and it was cancer. Alot of times, it's just really hard to know what is the hard truth of the matter. That's why they scan us so much, because they are really not too sure either.

    The old adage: "If you don't expect too much, you won't get let down."

    The best thing we can do is what you've been doing - stay diligent - make a call if you feel you are not hearing what you need, or you suspect something might be wrong. You're on top of this, and you're calling the ball, so here's hoping to finding some more answers, even though it may take a biopsy or waiting for another scan cycle.

    Thanks for posting and I look forward to hearing your story on this latest development.

    -Craig:)
  • HeartofSoul
    HeartofSoul Member Posts: 729
    Sundanceh said:

    Hey Valerie
    All of us, our doctors included, put way too much emphasis on the tests and the results. We should begin to think of them as a "possible indicator" - not the absolute, died in the wool, truth. Because, alot of times, the tests can be misleading. There is a thing called "False/Positive."

    The tests are just that - they are a tool - and unfortunately, the best tools that we have available in the year 2010.

    I've really learned over the last year, especially, that alot of my tests have been flat out wrong, or against what we think they should be.

    Examples:
    Pet Scans show uptake to the spots in question - surgery reveals benign growths.
    Sometimes PET shows a mass - but the CT did not see it.
    CEA levels are normal, way below normal, and yet Cancer running rampant inside your body.

    Just to name a few...

    I've learned to just use these as a measurement - and when we watch and wait and we see growth, then we ready to action.

    Biopsies are always good, but even those can be "hit or miss." I mean the technician might miss the area entirely, depending on tumor size - and right now, yours are still fairly small.

    And I've had biopsies tell me nothing, and yet I had an active 9cm tumor in my liver at one time and it was cancer. Alot of times, it's just really hard to know what is the hard truth of the matter. That's why they scan us so much, because they are really not too sure either.

    The old adage: "If you don't expect too much, you won't get let down."

    The best thing we can do is what you've been doing - stay diligent - make a call if you feel you are not hearing what you need, or you suspect something might be wrong. You're on top of this, and you're calling the ball, so here's hoping to finding some more answers, even though it may take a biopsy or waiting for another scan cycle.

    Thanks for posting and I look forward to hearing your story on this latest development.

    -Craig:)

    Every cancer patient should
    Every cancer patient should understand the benefit of tumor boards and push for them when there is not a clear cut dx or and treatment plan. Its too important to be just a option, its part of receiving improved care and increase in seeing the entire picture and all available options.

    Virtually all patients with cancer are diag nosed in the primary care setting, and the
    majority (78 to 80 percent) receive all of their cancer care in community hospitals.
    The initial evaluation and treatment decisions are the most critical in the outcome for a patient with cancer; but cancer is a systemic illness that can rarely be detected, diagnosed, and adequately treated by one physician. The tumor board of a community hospital offers a multidisciplinary patient-oriented conference that can lead to
    improved care of the cancer patient and to improved education of the treating physicians.

    The primary goal of a tumor board is to improve the care of the community's cancer patients through the exchange of information among participating physicians. It
    is extremely rare for an individual physician to see enough patients with any given
    problem to form his own data base as to the appropriate steps in diagnosis and manage
    ment. The meeting of the tumor board at which time local specialists are able to share
    their expertise which is based on their own experience, as well as a knowledge of the
    current literature is a environment in which the primary care physician can take
    advantage of the expertise of his colleagues, expand his data base, and improve
    the care of his patients

    Tumor Board members include pathologists, radiologists, medical oncologists, radiation onc, surgeons, nurse onc, and other specialists.

    The tumor board provides a formal structure to assure that communication lines are open and that each member of the medical community can benefit from the expertise of others.
    In this way, the tumor board contributes to the education of physicians. A discussion of individual cases, in terms of diagnosis and management, leads quite naturally to a review of cancer management principles. Although the tumor board is clinically oriented, participating physicians are encouraged to share their knowledge of the current literature, as well as of ongoing clinical trials that might be available to local cancer patients.

    http://onlinelibrary.wiley.com/doi/10.3322/canjclin.37.2.88/pdf
  • LOUSWIFT
    LOUSWIFT Member Posts: 371
    tests
    Hi Val
    The things I've learned is don't trust doctors, technicians, assistants, nurses, labs, assistants or their dogs. We are one of thousands of unimportant cancer patients but more important billing numbers. I got cancer because a gastro doc missed a polyp in 2005 during a sigmoid. In 2006 when dx with rectal cancer surgeon said he couldn't undestand how it was missed but it happens?? After surgery I was in the hospital for five days. The first 16 hours after surgery I recieved no pain medication because the nurse did not hook up the device correctly and no matter how many times I pushed the button I got nothing. They gave me a nice apology letter. Now in March 2010 went in for CEA. It went from 1.4 to 5.6. Onc said probably nothing lets do a CT/Pet scan. Techs were having problems with the machine but did me anyway...what a relief came back absolutely clear. July 2010 did another CEA now 14.6. Onc said lets wait about six weeks and give whatever is in there a chance to grow so we can see it better. What??? Personal doc said BS ordered a colonoscopy. August 2010 Gastro Doc found a 2cm tumor in my asending colon. Surgery two weeks later and again stage 3 with 3 nodes involved. Surgeon wasn't so optimistic about my survival this time with a stage 3c reoccurrence. ONC couldn't understand how CT/PET scan missed it but said maybe because it was low grade and likely still contained in the colon back in March 2010 then that is why is didn't show up? Tumor just needed some time to grow through the colon and spread to three nodes and stupid me, I gave it the time. I trusted and did not question!! Now will be on 4th treatment of Folfox and having a wonderful time with severe stomach pains, hand sensitivity, nausea, my first mouth sore, and being too tired to sleep. My point to my long sad story, take your health and your life into your hands. Get lab tests demand answers and the first doctor that pats you on the head and says don't worry about it fire him or her. Sorry about the vent I am hurting tonight four days out from my last folfox and not improving very fast with somewhere between 5 and 9 folfox treatments to go. Plus I wonder how many others here would not be here if things had been done right? Best of luck! Lou
  • Lori-S
    Lori-S Member Posts: 1,277
    Hi Val
    I'm sorry you have to go through this. Somemtimes the tumors don't give off CEA so that is why the CEA alone is usually not used if there might be a new tumor. I was told that each tumor and each cancer is individual in that regard. For example while your CEA might have been a good indicator with your first occurence, if there is a recurrence or new growth, you might have to wait to see if it is still a good indicator.

    I feel your frustration. When I was first dx I was told that I had a good sized tumor that was seen on the scan but not an obstruction. Well excuse me but, they gave me nothing but golytely for 3 days with absolutely nothing coming out and then acted surprised when they opened me up to find severe distension and total obstructiton in the colon and a partial obstruction in the small bowel with a tumor that literally had grown all over the place and in and out of places on my left side. Now you would think that with all the CT scans I had before surgery (4) they would have known the extent of the tumor. So, unfortunately sometimes it just seems like they are guessing. But, at least it's an educated guess.

    Hang in there. Try not to second guess yourself. I know waiting for everything to come into focus with this is going to be tough. Hang out here and vent away if you need to. Remember that there is just as good a chance that it isn't cancer as that it is .. according to your doctor.
  • vchildbeloved
    vchildbeloved Member Posts: 133
    Lori-S said:

    Hi Val
    I'm sorry you have to go through this. Somemtimes the tumors don't give off CEA so that is why the CEA alone is usually not used if there might be a new tumor. I was told that each tumor and each cancer is individual in that regard. For example while your CEA might have been a good indicator with your first occurence, if there is a recurrence or new growth, you might have to wait to see if it is still a good indicator.

    I feel your frustration. When I was first dx I was told that I had a good sized tumor that was seen on the scan but not an obstruction. Well excuse me but, they gave me nothing but golytely for 3 days with absolutely nothing coming out and then acted surprised when they opened me up to find severe distension and total obstructiton in the colon and a partial obstruction in the small bowel with a tumor that literally had grown all over the place and in and out of places on my left side. Now you would think that with all the CT scans I had before surgery (4) they would have known the extent of the tumor. So, unfortunately sometimes it just seems like they are guessing. But, at least it's an educated guess.

    Hang in there. Try not to second guess yourself. I know waiting for everything to come into focus with this is going to be tough. Hang out here and vent away if you need to. Remember that there is just as good a chance that it isn't cancer as that it is .. according to your doctor.

    Thanks you guys, I really
    Thanks you guys, I really needed to talk to someone that could totally relate to what I'm experiencing. My husband adores me, and trys to comfort as much as possible. Somehow it's not the same. I'm also sorry Lou for what you are going through at this time. Will try to stay more closely connected to this board and to you. It really helps!!!!

    Val
  • Kathleen808
    Kathleen808 Member Posts: 2,342
    Val
    Val,
    I'll be thinking about you and saying a prayer on Wednesday. I have been struggling with the inaccuracy of the scans as well. So many time we read that someone has had clean scans and then they are opened up for pain and there is cancer in a number of places. It kinda freaks me out. I am looking into whether or not a doc will do HIPEC even if scans are clear. It seems silly to just sit and wait for the inevitable.
    So, I have had the same frustrating thoughts as you. I hope that all turns out for you.

    Aloha,
    Kathleen