I have a habit, which I really must break, of checking my email early in the morning, when my husband gets up for work. I myself usually don't need to get up for a couple more hours, so there's really no urgency to look at what might have arrived in my inbox overnight.
That lesson was brought home this morning by an email notice for what turned out to be a rather disconcerting CT scan report, which has finally been posted to my so-called patient portal. It was for my latest scan, done two weeks ago. I had the most recent consult later that same day. It's important to know that the scan results were known to the oncologist at the time of my consult, at least for the scan in question.
It's also important to know that in the consult, my oncologist said something about a liver lesion that appears not to have changed in a year, and therefore wasn't concerning. The "wait, what?" element comes in here, because according to the written CT reports that I've received for the last two scans (last October and the preceding April) there was nothing that showed up on my liver at all, only small unremarkable renal cysts (also stable). But I didn't have my consult notebook with me--a major oversight, clearly--and so felt puzzled about that statement without processing it further.
I should note here as well that as far as the oncologist is concerned, per the scan and my exam, everything is hunky-dory. If things are the same for the next scan in October, then I may come off the Megace entirely and move to yearly scans. That would be progress.
But on the scan report that I read today for the first time, there is this passage:
LIVER, BILIARY TRACT, GALLBLADDER: 0.6 cm low-attenuation lesion in theI am very puzzled, and a bit alarmed, given this statement later in the report:
subcapsular region of the right hepatic lobe (series 3, image 319) this
is not significantly changed compared to previous examination from
10/7/2013 but is new from 4/8/2013.
1. 0.6 cm low-attenuation lesion in the right hepatic lobe as describedI called the oncologist's office at the start of business hours to ask for clarification. I did hear back from someone, not medical personnel, who wanted to make sure of the questions I was asking. (And actually I have another question now, too.) It turns out that the oncologist also reads the scans, probably a very good practice, and perhaps that's how something that wasn't mentioned 6 months or a year ago by the radiologist was still something that caught her eye.
above, stable compared to the immediate previous examination from
10/7/2013 but new from 4/8/2013. It is unusual to have a solitary
hepatic metastasis without evidence of disease elsewhere however, with
its interval appearance, cannot exclude the probability of a metastatic
lesion. If additional imaging characterization is desired, an MRI may
be performed. Alternatively, short-term interval follow-up may be
I may hear something in the next couple of days. I assume I have nothing to worry about, really, at least not anything more than usual, but it does bother me all the same. I like to know what's going on, as best as I can, and this has thrown me a bit for a loop.
At group today I also received the suggestion to go through my primary doc in case the explanation I do get doesn't make sense, or isn't sufficiently reassuring. Otherwise, everyone was equally puzzled.
Comments? Observations? Experiences?
Follow-up: I did hear back from one of the fellows this afternoon. It seems I never see the same one twice, but I think I remember this one. As best as I can make out the explanation, the lesion was originally picked up in a re-reading of the earlier scan(s). I am guessing that first happened six months ago, but honestly I still can't tell. There's no later version of any scan report, and most of this was conjecture anyway from the fellow, working from general principles more than from direct experience with my records. However, the conclusion still is that there is nothing to worry about, since it is 1) one single spot and 2) stable. The fellow described the other language in the report as basically CYA text, though not in those exact words.
It still feels odd, though I can understand how it might have happened. I will still try to get a better understanding of the problem at my next (quarterly) consult from my oncologist herself. I appreciate their effort to allay my concerns, but the chronology is not clear to me.
Another example of my need to be in the know, to salvage some feelings of control, I guess. I am still curious whether any of you have had similarly disconcerting experiences with test results--their interpretation and/or communication.
Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7-8 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.