onedayatatime wrote:... I only want to vent, and then to see if anyone of you can set me straight re my expectations.....If you’ve made it this far in the post, thank you, and I would love to hear your thoughts.
Yes, I have some thoughts, but I also have a few questions, but first of all my thoughts...
From what I understand from your long post, your expectations are to have better quality information from your doctors (surgeons, oncologists, radiologists) whenever you are given your results, whether they be CT scan reports, lab reports, colonoscopy reports, surgery reports, or whatever.
To understand what is meant by "better" or "more" information, though, we must first understand the different types of information. This can be done by reviewing the levels of the DIKW data pyramid. I apologize if this seems a bit too theoretical, but I think that this is necessary in order to understand what you have been given in these reports versus what you expect to receive.
There are 4 basic levels in a knowledge pyramid - Data, Information, Knowledge, and Wisdom (DIKW). Ideally, what we would like to receive is Wisdom, in other words, a perfect understanding of our situation that will allow us to make plans and to understand what is likely to happen. Unfortunately, Wisdom is very hard to come by in the medical context because there are so many different things that need to be taken into consideration, and a lot of the underlying information is imperfect and perhaps unreliable. What we are given in the reports is usually something less profound.
At the bottom level of the pyramid is raw data
. Here you are given a lab report with numbers but no context to let you know if the numbers are normal or not. Or you could be given a set of CT scan images with different shades of gray but with no context to give meaning to the images. What you need in order to reach the next higher level is "context".
At the second level of the pyramid the raw data is converted to information
by providing units of measurement and other details. For example, a lab result could give the units of measurement and the normal range cut-offs. For a scan report, the report could give the number, size, shape, density and specific location of the spots seen in the images. At this level of the pyramid you do have some facts, but you still lack interpretation. In other words, you know more about the details, but you still don't know what it means for you. What you need in order to advance to the next level is "interpretation" -- interpretation by an expert who knows what these facts mean, given the overall context.
At the third level of the pyramid the factual information is converted to knowledge
-- knowledge about what this means for you, the patient. For example, at this level a CEA value could be interpreted as normal or as abnormal, depending on its level now as compared to its previous level, and CT scan spots could be interpreted as likely benign, or likely malignant depending on the profile of factual data for each of the spots. But this knowledge doesn't tell you what action you or the doctors should consider taking. You need more than just knowledge that things are stable for the time being, or that things are getting worse. What you need in order to advance to the next level is the wisdom of an experienced expert who has seen these patterns many times before and can provide advice on what action to take.
At the fourth and final level of the pyramid the knowedge is converted to actionable wisdom
-- wisdom about the best thing for you to consider doing now and in the near future. For example, at this level an elevated CEA value could be considered as being insignificant since it is still a single digit and still within the expected range, and for a CT scan report, the wisdom could be that these spots are likely malignant but there are too many of them and too close to important blood vessels to attempt surgery right now, so additional chemo is recommended to try to reduced their size and number.
So, if you have followed me so far, I think you get the picture. There are different levels of information, and we always want the best information we can get. However, sometimes this is not possible. For example, a CEA value cannot definitively tell us whether we have an impending recurrence or not, and a CT scan cannot definitively tell whether a spot is a tumor or just a scar. These findings only constitute partial evidence. If the findings are equivocal or uncertain, the doctor may declare No Evidence of Disease (NED), in other words there is not enough evidence for the doctor to say definitively whether disease still exists or not. So, NED does not mean "no existing disease". Rather, what it means is that the technology used so far cannot make that determination. Better technology might be able to make that determination, but the technology available at the moment cannot.
Sometimes the problem is not the lack of higher technology, but the lack of experience on the part of the doctors or specialists who are responsible for interpreting the results. In that case, there is the option to send the data files out for a second opinion, hoping that the new reviewers will be more experienced than the original reviewers.