A Sad Footnote

While we were getting the good news I wrote about in my last post, another member of the cholangiocarcinoma community, Sarah Bennett, was entering home hospice and dying. Today, September 22, we went to her funeral, about an hour from our home in New Jersey.

Every death from illness is a matter of sorrow, but Sarah’s was especially so. She was the creator and guiding force behind the Facebook patients’ group for people with this illness, the Cholangiocarcinoma Warriors. This is a difficult group to lead, because the members are going through a very wide range of different experiences. Some are at early stages and can report successful treatment (a few can do so even at later stages); some are ill and suffering; some are dying. I personally felt guilty about reporting my own recent good news when I was aware that Sarah was rapidly declining. But the Warriors group under Sarah’s leadership set out to be a home for all these different people, as welcoming to those expressing confidence as to those feeling despair. Sarah accomplished this almost impossible feat largely by giving to the group her own tremendously strong commitment against the disease and its impact, and her close personal connection to all the group’s members. It was impressive and inspirational.

If the impact of this disease had anything to do with what people deserve, she would have beaten its onslaught, and would still be on the scene helping to inspire and remember other patients. I should add that I don’t say this to challenge anyone’s religion. Some of the members of the Warrior group do respond to events in their illness in very religious, mainly Christian terms; but some don’t. All are welcome. I don't know exactly how religious Sarah herself was;  certainly she could swear up a storm, and members of the group took that in stride too.

Deaths like hers are hard for anyone from any system of belief to come to grips with. Her eloquent family, however, brought her to life for us during the service, and we learned that in the course of the service and two days of visitation, approximately 1000 people had come to remember her. Some had traveled many hours to attend. That effort by so many reflects Sarah's exceptional contributions. And those must have gone well beyond the Warriors group, since there aren’t close to 1000 active participants in this group – cholangiocarcinoma is a rare disease. Nothing she did in her 35 years, however, seems more remarkable than the effect she had on this patient community during the four years that she herself fought against this disease, and helped so many others to fight their struggles too.

To our great sadness, she is no longer with us.

Passing My Tests

On September 7, I had two more scans, meant to determine definitively what the effect of my summer’s radiation treatment had been. I’d had one earlier post-radiation CT scan on August 21, but that was meant to make sure that the various side effects I was feeling were in fact side effects rather than something else. These two were focused on whether the radiation had been successful against my tumors – the critical question.

Why two? Because the two scans had overlapping functions. The CT scan looks for actual physical masses, such as tumors. But even if you find a mass you don’t necessarily know what kind of object you’re looking at. The other scan, the PET scan, doesn’t look for physical masses but for activity: if the scan picks up signals of “avidity” – essentially, high consumption of energy, which is characteristic of cancer – that’s a bad sign. What you especially don’t want is for the scans to coincide, as they do if the CT scan finds suspicious physical spots and the PET scan finds those spots fit with cancerous energy consumption.

My scans have now been read by three MSK physicians (and by Teresa and me). They’re pretty technical documents, so we needed the doctors’ translations. But in another way they’re also pretty simple: that is, if the scans are good the doctors are pleased, and if the doctors are pleased then we’re pleased.  All three doctors were pleased; in fact, I think it’s fair to say they were all very pleased. And so we are too!

What the scans showed was first, that all the tumors MSK was attacking with the radiation were now smaller. They hadn’t disappeared, but they were smaller. Second, the signs of extra hunger in the locations of those tumors had also largely disappeared; energy consumption in those areas was now roughly the same as in the normal, unaffected parts of my liver. And, third, the only instances of either physical locations or energy consumption that were at all out of line did not coincide with each other, and so the doctors weren’t worried by these.

In short, the doctors just weren’t worried. The radiation, delivered by the latest techniques so as to give my tumors a high and lethal dose, appears to have done just that. So what do I do now? The answer is: nothing. My next scans are in two or three months; between now and then I won’t receive any treatment for cancer itself, and if the next scans are similar, that will continue.

I should add that though I have no cancer treatment scheduled now, I will continue to have treatment for side effects, such as stomach problems and intense fatigue, and for the side effects of the side effects medicine. Sigh. It was because of possibilities like these that I had yet another scan on September 18. As readers of this blog will recall, one night some weeks ago I had trouble staying upright as I went for a walk, and I’ve also felt from time to time that I’m losing track of my own arguments in conversation. 

With those in mind I had a brain scan. This is an interesting experience in its own right; as the patient, your head goes into a helmet/camera lens which looks a bit like the helmets worn by the evil Empire soldiers in the Star Wars movies, and then you spend 30 minutes being motionless while they scan your brain. The idea of anything out of place in your brain is scary, of course, but the radiation oncologist told us in advance that these scans are usually given to rule out possibilities rather than because the doctors expect to find trouble, and happily that turned out to be the case for me: there’s nothing going on inside my brain except the usual, flawed as that may sometimes be!  I think the moments when I don't seem to be functioning as acutely as I want to are expressions of the fatigue that the radiation has caused me.

Finally, as to my prognosis, I specifically did not ask the doctors to give it a number, and they didn’t, but what the radiation oncologist said is that my prognosis depends on what if anything emerges next; what I already had has been so thoroughly attacked, it appears, that it is no longer a factor. This isn’t quite “NED” – No Evidence of Disease, the modern phrase that doctors use instead of “in remission.” But it does appear to be the next best thing, which I’ll make up: “NEAD” – No Evidence of Active Disease. We certainly didn’t count on achieving this state of affairs back in November 2015 when I was first diagnosed with this insidious, but as we’ve learned not all-powerful, cancer. I’m very grateful to MSK and to Teresa, and others, for all the help they gave me in getting to this point.

Disclosure and truth

Over this past weekend, on September 8, 2018, the New York Times revealed that a senior Memorial Sloan Kettering cancer doctor had not filed disclosures of financial connections to his research – even for articles in a journal of which he was at the time an editor. Sloan Kettering for its part initially said that such disclosures were the responsibility of the scientist and not of the institution, but the next day, September 9, it effectively revised this position and issued a reminder to all its staff of "do[ing] a better job" of complying with these rules.

Well, they are rules and so as a matter of general principle they should be complied with. No one is immune from financial temptation and in fact a lot of money is in play in cancer research and treatment, so there is good reason to require the disclosure of the movement of that money from corporate sponsors to individual scientists. (It has to be said, also, that the disclosure system as described by the Times does not incorporate very strict enforcement procedures; being obliged to meet disclosure rules still does not seem to be accepted by the medical community as truly integral to their work.)

But complying with these rules is not just a matter of avoiding financial problems and temptations. The fact is that a lot of medicine depends on truth. Doctors are expected to give their patients accurate statements of their situation; there may be exceptions to this rule but they are controversial exceptions, not the rule. And on the other hand patients are expected to be truthful with their doctors. That’s partly a matter of self-interest: the patient who doesn’t tell the doctor about drugs she is taking, or behaviors she’s engaged in, is risking her own health being damaged by unanticipated side-effects of either one.

But not all disclosure by patients is directly for their own good. Clinical trials carefully select the patients whom they will admit for treatment. A patient who reveals a disqualifying fact has just lost his best, possibly his only, opportunity to get an experimental treatment. Why is this sacrifice exacted? For the sake of science: the experimenters need to know who they are treating so they can measure the significance of the results that they get. 

The patient’s sacrifice is all the greater if the clinical trial design is not truly motivated just by science, but instead is part of a carefully calibrated effort to generate results that will in turn lead to the approval of some use of the experimental medication that the trial sponsor will market. Then the patient’s truth telling may in practice have as much benefit for the health care company's profits as for scientific understanding. But we live in a world where private motives of one sort or another have a lot to do with the generation of knowledge; this world is imperfect but productive, and so we apply the duty of truth to patients seeking admission to the trials that our imperfect world generates.

What we have, really, is a social contract that means to call on all participants in the health care system to act truthfully. But a social contract that only one side honors is a flawed contract. (I suspect some patients decline to honor their side of the contract too; their need is more immediate and personal than the doctors', and there must come a point at which the individual’s desire for life outweighs his or her obligations to the social contract, but in principle patients too are bound by this mutual agreement.) Physicians and patients need each other’s adherence to this contract, and that means the duty of disclosure and truth runs both ways.