Comment by jseliger | Hacker News Reader

Comment by jseliger | Hacker News Reader

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Tell people that you don't know the answer

I should probably clarify that point; oncologists are often dealing with small numbers and a lot of uncertainty. I'm also not sure how much they're supposed to say—I don't see the NDAs or other docs they sign with drug companies. That said, if they see tumors shrink in at least some patients, that's pretty good.

I also have recurrent and metastatic squamous cell carcinoma originating in the tongue. A lot of these 1b and even 2 trials are being tested in multiple cancer types. Something can work pretty well in lung but not head and neck, or vice-versa.

They will say they don't know the answer, but I prefer having some guidance. "Good" and "bad" are also relative, particularly for what I have, which is nearly always fatal. Is SGNTV good, cause it shrinks some people's tumors, or bad, cause of all those side effects? The answer is both.

It's still useful IMO to run sanity checks on what you're told. For example, one onc said that I should try a trial very similar to this one: https://www.oncnursingnews.com/view/lenvatinib-plus-pembroli..., or one like it, that had already failed. When I checked to see what research had been published, I was baffled by the rec. I checked w/ my oncologist at UCSD, and she was also like: "I would probably not rank that trial highly."

> I'm also not sure how much they're supposed to say—I don't see the NDAs or other docs they sign with drug companies. That said, if they see tumors shrink in at least some patients, that's pretty good.

I mean, that's all they have to go on, so it's all they can say. But it's a long way from any sort of proof, and they really should only be saying "we don't know, and you're taking part in an experiment to find out".

What you're saying about oncologists sounds quite plausible to me...there are sadly a lot of doctors who don't understand science, and it's sort of a fundamental feature of medicine that the people involved want very badly to believe in whatever they're doing. This can/does lead to people making bold claims on thin evidence.

That said, I do hope it works out for you, and I wish you the best. It's a selfless thing to take part in a clinical trial, and even more so when the stakes are so high.

Edit: regarding the pembro+lenvatinib trial article you linked (LEAP), it's not the only one that showed similar results (PFS benefit, but no OS). The CLEAR trial was similar: https://www.youtube.com/watch?v=CsN0mskqUyU

Edit 2: also, I want to add that nothing I said above was meant to imply that they should hide data, just that they should make it clear what the odds are in a phase 1 trial situation.

>there are sadly a lot of doctors who don't understand science

This is probably partly due to the history of medicine. It's not like engineering, which is fundamentally the practice of applied science. Medicine came from a very different path, basically like voodoo or witchcraft, and has been struggling to become more scientific. Many fields of medicine are fundamentally unscientific, such as chiropractic.

Also, doctors (mostly) aren't scientists or researchers at all: they're basically what non-medical engineers and scientists would consider "technicians". They use tools and knowledge the scientists and engineers have found or made, and apply them to individual problems (i.e. patients).

Of course, it doesn't help at all that the systems doctors work on (human bodies) are ridiculously complex, and themselves not at all a product of engineering. And on top of that, every human is somewhat different, so things that work on one don't work on others.

Personally, I think the entire field of western medicine, though it's still better than the ridiculously unscientific forms of traditional medicine it competes with, needs some work to improve its scientific foundations.

>But it's a long way from any sort of proof, and they really should only be saying "we don't know, and you're taking part in an experiment to find out".

I think this is a fundamental misunderstanding of what doctors are communicating. Of course they can communicate medical consensus, but they can also communicate personal opinion, as fallable as it may be. It is a human interaction.

This article so clearly articulates the same chaos and uncertainty that I experienced in this exact same process with my wife’s cancer. The same experience that motivated my comment in the AskHN a couple of days ago asking how to engage the healthcare community to find opportunities to build something useful [1]

“Bess and I have learned not to wait. The healthcare system often moves slowly, and it’s good to be agentic. Insufficient agency is how people die while waiting for some indifferent bureaucrat to get back to them, or for some other bureaucratic process to spin up before the rapidly dividing cancer cells spin someone down”

So many little statements in that article ring true but I felt this deep in my core. Your notes about the onc being on vacation resurrected a little taste of the bile I had in my heart for the infuriating pace of everything.

I got to a point of deep, seething hatred for it all until one day my wife’s surgeon broke down crying on the phone. That little glimmer of humanity in what felt like a giant broken machine made me take a moment of pause and consider that some of the seeming indifference and immunity to the urgency might be self-protection. I have no idea what it’s like to work in a field where progress is so slow and the stakes are so high.

I wish you the best and thank you so much for sharing your journey so vividly. I think it really may be useful for those that find themselves in that same crucible.

1 - https://news.ycombinator.com/item?id=40089389

I think it's pretty easy to see things from the perspective of those in the medical field. You're treating a vast (and ever growing) number of people each year, you're overworked and buried in paperwork, and in the end - regardless of how much personal attention you dedicate (or don't) to somebody, their odds of survival are not going to change much. It's soul crushing work that's often paired with lots of quite dark humor. The more death you're around, the darker and more frequent the humor becomes, to the point I don't feel comfortable offering examples here. It's a coping mechanism.

And then after all of this you need to go to the next patient, smile, and do your best to make them feel comfortable and completely confident in everything you say, all the while they [understandably] see their or their loved one's case as the single most important thing in the world. If you want to create a tech solution for something, it would definitely be the paperwork. But it's mired in a million rules, regulations, and restrictions that alone probably make any sort of effort to streamline it probably unworkable if not unlawful.

It is when you sit and think about it of course. Our family has always had very dark humor and our daughter started her nursing career a year after her mom passed. No examples needed lol.

The challenge is maintaining that empathy in the face of an incredibly callous system.

I'm sorry for what your wife and you have gone through and I cannot imagine the frustration caused when being at the mercy of a seemingly uncaring bureaucracy and having little power to do anything.

I do think that more often than not, the doctors appear uncaring because they're under a very similar feeling that you experienced - but all the time. If they don't build emotional barriers, they wouldn't be able to cope. I feel this is doubly true for areas like oncology where death is a much more regular occurrence and can happen even when everyone has done everything right.

I cannot fathom the feeling of having to see people wither away, to see family after family lose their loved ones. Any doctor who doesn't learn to completely distance themselves from it all is probably not going to last.

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