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Survivors

Public Group active 4 years, 7 months ago ago

A group for survivors. Tell your stories and discuss your plans.

When bloodwork or Xrays are not reassuring (6 posts)

  • Profile picture of rick rick said 6 years, 4 months ago:

    A good decision is based on knowledge and not on numbers.
    Plato

    So, a few times a week I see patients whose tumor markers (bloodwork that can detect cancer ie CA125, CEA PSA) may rise a little bit. Or an Xray that may show some nondescript tiny shadow. They aren’t really bad, they just aren’t aren’t reassuring. I generally explain these as the “margin of error” in the test, little normal variations that that you expect in bloodwork.

    But what I easily rationalize as “normal fluctuation” can be devastating for a patient,who oftentimes assume the worst. They usually have to wait a while for a repeat test to reassure themselves. Just wondering, when I say “normal variation”, what do you hear? Have you ever been in this situation? What does it feel like?

  • Profile picture of Jeanne Angalet Jeanne Angalet said 6 years, 4 months ago:

    Hi Rick, good question! I’ve been this patient. I have to say that being through 3 recurrences since diagnosis 6 yrs ago, I’ve learned that we watch trends, not absolutes. With colon cancer, it’s the CEA. Even today at my appointment with my oncologist, I was persistent in asking about my CEA value. His response – “I want to know how you FEEL.” And of course we looked at my CEA, which is stable.
    Also, I have a science background. I don’t know if ‘average joe’ understands ‘normal variation’ and ‘margin of error’. When I’m the patient in the chair, and these are the words the doctor uses, I feel like he’s sort of shrugging off my worries, and there’s some medical something mumbo jumbo that is going on. He doesn’t think he needs to explain it to me.
    I think if the doctor said something like “I know it can be worrisome when these things show up/numbers change.” Then explain about the body’s fluctuations, and what is normal.
    Does this make sense to you?
    Thanks for thinking about this, Rick.
    Jeanne

  • Profile picture of Lin Elliott ctacc Lin Elliott ctacc said 6 years, 4 months ago:

    Hi Rick, personally I hear, “don’t need to worry” but I think I am in a minority here. A couple of years ago I was told after a breast MRI (I won’t have mammograms), that my other breast had small spots all over it and I needed a mastectomy. But I did not feel ill, I felt really good and did not believe this. So despite much pressure from my doctors, I insisted on waiting 3 months and retesting then. The next MRI was completely clear.

    My point here is, that it depends very much on the personality of your patient as to what they hear. I think that perhaps cancer doctors need more training in psychology so they can better asses what language to use with which patient. I do believe truth is always the best option but perhaps it’s how it’s delivered that matters most, and sometimes doctors get too invested in the protocol. There are always alternative!

    But I do love that you asked.

    Thanks
    Lin

  • Profile picture of rick rick said 6 years, 4 months ago:

    Thank you both for your insight. I went to m wife’s follow up visit with her this week. Her bloodwork wasn’t back but her oncologist explained that they test was sent out to a different lab than her others as the hospital had changed venders. The new lab seemed to have numbers that ran a little higher. My wife called me very worried two days later when her test had gone from 0.001 to 0.003. My response was that Given her doc’s warning I expected it to be higher. I felt perfectly comfortable. My wife did not. And she’s a CPA/MBA. Numbers are her thing.

    I struggle with the wording to help patients understand. I talk about “normal variation” and “lab test variance”. But that leaves a lot of blank faces. I tell folks that I’m not worried and we’ll repeat it in a short time, but that always feels paternalistic. I try the counter argument where if it went down two points or s they wouldn’t be in a “better” remission. Maybe a graphic of the recent labs to show that they bounce around a little or showing things like kidney or liver tests which also bounce around.

    But as you suggest, it is one number. One data point. Other assessments: exam, general well being, other bloodwork concurrent medical problems are also important. We all tend to get hung up on the absolute value of the marker and get very anxious when it goes up a bit and very reassured when it goes down. We get stuck focusing on the number rather than quality of life.

    My big concern is that patients will feel blown off if I say dont worry and anxious if I say we’ll watch it closely. These visits tend to be unsettling for us both, doctor and patient.

  • Profile picture of Kayla Dolan Kayla Dolan said 6 years, 4 months ago:

    When I started going to the doctor, in April, for the symptoms that led to my diagnosis it started with blood testing to see if I had any hormonal imbalances. All of my testing came back within normal limits, which led to the pelvic ultrasound and when the doctor called he said “he wouldn’t commit,” which then led to the MRI which is where the ovarian tumor was found.
    During my surgery to have the tumor and the ovary removed the testing came back benign, but still a slight chance of chance, I believe Dr. Boulay said 1 in 10 people see a change from original pathology and he had it tested quite a few times (which i appreciate by the way!) because it looked “funky” so, after all the testing, he was pretty confident in pathology’s ruling. At the follow-up appointment we were informed that pathology had changed and the tumor was cancerous.
    Needless to say, i’ve haven’t been the patient with a follow-up blood test result in “normal variance” or a “lab test variance” but I have been the patient that what looked “normal” turned out to be not so normal. So, what concerns me is when all the test results come back normal and there is actually something wrong.

    How does someone rely on those tests after testing has proven to be faulty?

  • Profile picture of Mary Hayes-Sharp Mary Hayes-Sharp said 6 years, 3 months ago:

    This question was talor-made for me. You already know how I can go from zero to sixty in the panic lane in less than ten seconds when I hear anything unexpected, even a slight change from 5 to 7 on my CA125. A natural variation, I know you told me. But I didn’t hear what you meant, I heard there’s a change, it’s gonna get worse, all down hill from here. I know, I know, I’m being stupid. It’s not your fault that I am this way in the first place. You’re doing just what you should be. You’re talking me down. When I come back around, I realize this. I look for reasons for my reaction and I see two, which others may share. First, I was so darn sick during my treatment. I never want to go back to a time when I was so weak that I couldn’t bathe or dress myself for months on end. The second reason is that upon recovering from that dark time, life, which I always loved, was just so much sweeter and I never want anything to change it again. I know time will take its toll on all of us and our circumstances will change, but gradually, Dear God, I pray, gradually.