Cancer Diary: What Doctors Say and Said, and What I Needed Them to Say and Wish They Had

 

The final conversation had with Carl's oncologist was what we needed in our first conversation but did not get. Not quite two weeks before Carl died, at which time he was in a subacute facility, having fallen the week before, been admitted to the hospital, then shifted to the care facility, the oncologist called us with the results of the latest scans. "Not good at all," he said, and he gave us three options:

• let nature take its course -- Carl could move to in-hospital hospice or in-home hospice (we chose the latter, and while we had a very bad experience with the initial hospice, it was still the best choice)
• try out another chemical compound - He told us he had given us the most appropriate and strongest ("the best") that he had, but if we wanted to try another mixture, he would look at other options
• take part in a clinical trial - He did not of any for Cancer of Unknown Primary and would have to do some research; there might not be any, and there might not be time enough for one

Carl's diagnosis came out of the blue, and we were like deer in the headlight. We mostly understood the connotations of what we were being told, i.e. we understood the vocabulary, the degree of sickness, actions we needed to take, and the kinds of treatment suggested, but we did not understand the range of choices, including palliative care. (Barbara Karnes says that often it is not in a doctor's toolbox to consider something other than treatment.)

Importantly, we did not understand the denotation of the words. The true choices were not clear to us. Yes, we saw two paths, but we had no idea what would lie along either path or where either could possibly lead. We were both optimists, and so was the doctor. We interpreted words that we did not truly understand on the far end of the optimism curve. What we needed - and did not get -- was a realistic assessment expressed in lay terms. for exanple,

• "Stage 4 is incurable"
• What does "incurable" mean - dying tomorrow, dying without intercession, or living at least for some length of time without a cure
• How about a prognosis? (I supposed doctors do not like to do this because cancer can be tricky and they can often be wrong, but knowing what a doctor is thinking in the back of his mind is helpful to a patient's ability to plan and make the most of what time is left [and if no time is left, to get affairs in order]; how about a simple longevity chart -- from the doctor, not one we have to find online?)
• "We will try to stop the cancer in its tracks"
• How much trying is likely to succeed, how realistic? How urgently? (Carl was diagnosed with cancer during the covid surge when everything was being triaged as less urgent than covid, but was it less urgent? As it turns out, it was at least equally urgent, unless you do not consider stage 4 urgent because it is incurable -- it would have been nice to know the doctor's frank thinking about that.)
• What does stopping the cancer in its tracks leave the patient within terms of quality of life? Like, how much brokenness and discomfort will be involved? How much of a cloud of anticipation that at any minute the cancer can come back? Understandably, the doctor is not clairvoyant, but s/he does have a collection of experiences that a patient does not -- and that collection could inform some decisions.
• "CUP is difficult to treat; we will try chemo based on gut instinct as to where the cancer started together with a generic mixture"
• Difficult to treat, we ultimately figured out, means that immunotherapy and any targeted therapy, which are the most effective means to treat some cancers, are not possible; without knowing the primary cancer, there is no "target" -- it took us a long time and a lot of research to figure that out
• CUP defies clinical trials (helpful to know) because the kind of cancer to treat is unknown; more to the point, each case of CUP is likely a cancer that started in a different organ -- no basis for comparison

Some of the things we later realized that would have been helpful for the doctor to convey include

• "the data suggest"...
• "here is some reading about the pros and cons of treatment vs palliative care -- would you like to talk to a hospice provider who might be able to provide more insight, especially in your case"
• "here is some reading on longevity stats and survivability -- and we can talk about what these mean for your case if you like"
• "here is a list of people who are going through or have gone through this; you might like to contact some of them"

Alas, with covid, even had the doctor thought to provide us with some of these suggestions, they would not have been possible to follow through on. But now...

Because doctors did not say these things to us -- and we had the best of the best (one of Stanford University Cancer Center's most beloved doctors, and we loved him, too) and because there were no quick accesses to information of the nature we needed, I created the CCC in the event that some folks might stumble across it and through the resources listed, find some greater understanding. (There is a dictionary, that keeps growing, of medical terms explained in lay language; we could have used that, too!)

Read more about Cancer Diary posts HERE.

Blog editor's note: As a memorial to Carl, and simply because it is truly needed, MSI Press is now hosting a web page, Carl's Cancer Compendium, as a one-stop starting point for all things cancer, to make it easier for those with cancer to find answers to questions that can otherwise take hours to track down on the Internet and/or from professionals. The web page is in its infancy but expected to expand into robustness. To that end, it is expanded and updated weekly. As part of this effort, each week, on Monday, this blog will carry an informative, cancer-related story -- and be open to guest posts: Cancer Diary. 

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