Help me make sense of this please

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vchildbeloved
vchildbeloved Member Posts: 133
edited March 2014 in Colorectal Cancer #1
I shared with you that last week I had a Ct scan that showed a spot on my liver about .7cm. I was diagnosed in 4/08 stage 3 with 1 positive node, surgery and 7 months of chemo. The oncologist ordered a pet scan; said if scan is denied, that he wants me to wait 1 month to see if the spot grows. He said only after growth can they use another testing method or do a biopsy on it. Is this correct according to anyone elses experience or is this another one of those I should be concerned about his methods. I told them that is too scary what they are asking. The positive thing is that all bloodwork and CEA readings were good. The only elevation is that alkaline phospatase. It went from 193 to 212 since Nov. The AST was normal. What's going on here?

Love you guys
Valerie

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  • kimby
    kimby Member Posts: 797
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    Growth
    Valerie,

    I have been watching 2 spots on my lungs for 2 years. We're waiting to see if they grow because they are too small to biopsy. It makes sense that it could be the same with the liver. Biopsy also carries the risk of seeding. Don't be afraid to get a second opinion if you aren't comfortable with what you're hearing. The more docs involved the more options you have. Go with your gut - trust yourself.

    Keep us updated,

    Kimby
  • vchildbeloved
    vchildbeloved Member Posts: 133
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    kimby said:

    Growth
    Valerie,

    I have been watching 2 spots on my lungs for 2 years. We're waiting to see if they grow because they are too small to biopsy. It makes sense that it could be the same with the liver. Biopsy also carries the risk of seeding. Don't be afraid to get a second opinion if you aren't comfortable with what you're hearing. The more docs involved the more options you have. Go with your gut - trust yourself.

    Keep us updated,

    Kimby

    Thanks Kimby. So 2 years?
    Thanks Kimby. So 2 years? In that time there's been no growth? I've been with this medical staff since 4/08. I don't know why I'm now questioning them so. The thought of anything there with the potential to grow and cause me more harm is a very uncomfortable thought. How do you go about getting a second opinion?

    Thanks again, Valerie
  • PGLGreg
    PGLGreg Member Posts: 731
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    Liver spot.
    Yes, that seems correct to me. I had a liver spot that my surgeon was rather concerned about. Before my LAR he ordered an ultrasound, so (he said) he could tell whether he need to open me up further to take out part of my liver. The ultrasound result was that the spot could be just a cyst, so my liver was left alone. That was four years ago, and for every CT scan I've had since, the radiologist checks the size of that spot. It's stayed the same, so the working assumption is that it is just a cyst, not a tumor. My bloodwork, like yours, seems all okay. I don't know the significance of the alkaline phosphatase reading.

    --Greg
  • KathiM
    KathiM Member Posts: 8,028 Member
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    I have had 3 'spots' found at original dx....
    over 5 years ago...lol...

    all CT scans 'see' them, but since they were checked out at the beginning, and the size, etc noted, as long as nothing changes, which it hasn't, there is no concern...

    I know waiting is the hardest thing...and thinking gets you to scary places...

    I'm sending hugs and hopes that this is nothing!!!

    Hugs, Kathi
  • Buzzard
    Buzzard Member Posts: 3,043 Member
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    KathiM said:

    I have had 3 'spots' found at original dx....
    over 5 years ago...lol...

    all CT scans 'see' them, but since they were checked out at the beginning, and the size, etc noted, as long as nothing changes, which it hasn't, there is no concern...

    I know waiting is the hardest thing...and thinking gets you to scary places...

    I'm sending hugs and hopes that this is nothing!!!

    Hugs, Kathi

    Its all about National Guidelines.....
    and the guidelines are subjected to every Dr to go by as far as how many scans etc...it sucks, but I think thats most likely his reasoning for not scanning...But however, I did have a talk with my Onc my last checkup (2 weeks ago) and he told me that CEA levels were a good indicator for me and when I asked about lungs liver etc he said that CEA levels were not used for the detection of breast cancer or other cancers or problems...The variable tests shows activity in areas that are tested during blood draws, one of them being the alkaline Phosphatase...you have to know that it is high when the bone growth is at its peak in both adults and children , especially around puberty. He informed me that unless it was a real high spike that there wasn't any real need to scan. But those tests are also other baselines to watch during checkups and treatments to catch anything that may be getting out of kilter...

    This was googled...take it with a grain of salt...it shows various reasons for elevated enzyme levels....remember I said various, not one so don't dwell on one, there are many many reasons why it might elevate...

    Alkaline Phosphatase
    An alkaline phosphatase (ALP) test measures the amount of the enzyme ALP in the blood. ALP is made mostly in the liver and in bone with some made in the intestines and kidneys. It also is made by the placenta of a pregnant woman.

    The liver makes more ALP than the other organs or the bones. Some conditions cause large amounts of ALP in the blood. These conditions include rapid bone growth (during puberty), bone disease (osteomalacia or Paget's disease), or a disease that affects how much calcium is in the blood (hyperparathyroidism), or damaged liver cells.

    If the ALP level is high, more tests may be done to find the cause.

    Why It Is Done
    A test for alkaline phosphatase (ALP) is done to:

    Check for liver disease or damage to the liver. Symptoms of liver disease can include jaundice, belly pain, nausea, and vomiting. An ALP test may also be used to check the liver when medicines that can damage the liver are taken.
    Check bone problems (sometimes found on X-rays), such as rickets, osteomalacia, bone tumors, Paget's disease, or too much of the hormone that controls bone growth (parathyroid hormone). The ALP level can be used to check how well treatment for Paget's disease is working.
  • PamPam2
    PamPam2 Member Posts: 370 Member
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    spots
    Hi Valerie
    I too have spots on my liver we are watching. Spot #1 was found about 2 years ago, doesn't light up pet scan, had MRI and CT scans of it, showing no growth or activity, about 17 mm in size, my last CT showed another about the same size. I went to James Cancer Center for second opinion from liver CA specialist, with the blessing of my Onc. he says she is right on line with her recommendations. She is now having me do CT every 6 months to keep a close watch on the liver, it could be cysts, or hemangioma (sp?) which is clustered blood vessels. Appearantly too small to biopsy, and I don't think I would want to be cut open again at this point, maybe for no reason! I am a little over 5 years out from stage 4 CC and doing pretty good. It is worrisome, and I try not to dwell on these spots, it is always more on my mind when time for scans. Hope your "spots" stay stable, and try not to worry about it all the time. Best wishes for you and your family.
    Pam
  • kimby
    kimby Member Posts: 797
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    Thanks Kimby. So 2 years?
    Thanks Kimby. So 2 years? In that time there's been no growth? I've been with this medical staff since 4/08. I don't know why I'm now questioning them so. The thought of anything there with the potential to grow and cause me more harm is a very uncomfortable thought. How do you go about getting a second opinion?

    Thanks again, Valerie

    2nd Opinion
    Valerie,

    I got a second opinion by calling a cancer center that I respected. I had an appointment within 2 weeks and ended up moving to that onc because I was so impressed. Just pick some places and start callling, simple as that.

    Good Luck,

    Kimby