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Comment by dredmorbius | Hacker News Reader

Jake posted as jseliger on HN: https://news.ycombinator.com/user?id=jseliger

He blogged at <https://jakeseliger.com/>, and numerous of his blog articles were submitted to HN: <https://news.ycombinator.com/from?site=jakeseliger.com>. That includes numerous topics, over the past year or so his experience with cancer, often concerning frustrations with the process and mechanism.

His essay on agenticness especially strikes me as hugely insightful and underappreciated. It was submitted several times to HN but saw little discussion:

<https://jakeseliger.com/2024/07/29/more-isnt-always-better-d...>

Jake's wife, now widow, Bess, blogs at Everything is an Emergency: <https://bessstillman.substack.com>. That also details the cancer / caregiving experience, from the point of view of a wife, caregiver, expectant mother, and emergency-room doctor.

View on HN

In an August 2023 post about regrets, https://jakeseliger.com/2023/08/12/regrets/, his last regret is:

    * Not looking into that thing on my tongue in July 2022, when I first noticed it, but that is very specific to me and probably not generalizable.

In https://jakeseliger.com/2024/05/16/the-financial-costs-of-he..., he mentions

    "...I got a partial glossectomy in Oct. 2022. Mine had some high-risk features, but I was assured that, with radiation therapy, it wouldn’t recur (Bess recalls the exact words being, “Don’t worry, this won’t be what kills you”).  ... In retrospect, however, I obviously should’ve been given chemo with the radiation, but at the time I was pleased to not need chemo, and I foolishly didn’t look deeper into the data on recurrence—which is common for HNSCC—and I didn’t seek second opinions. Some of those second opinions might’ve said: “Get the chemotherapy."

Followed by radiation treatments, mentioned in https://jakeseliger.com/2023/11/14/the-more-things-go-wrong-...

He posted about his followup investigation and the treatment of his tongue one year after the treatment - https://jakeseliger.com/2024/05/25/the-one-year-anniversary-...

    "By July 21, less than two months later, another six to eight tumors had grown. If I’d known how things would shake out, I likely would’ve pivoted to chemo and clinical trials the moment the surgical biopsy came back. But I didn’t and couldn’t."

His first public announcement of his cancer - https://jakeseliger.com/2023/07/22/i-am-dying-of-squamous-ce...

Followed by https://jakeseliger.com/2023/07/23/how-do-we-evaluate-our-li...

From his wife's perspective: https://jakeseliger.com/2023/07/24/what-its-like-to-be-marri...

His wife had several posts about their search for an appropriate trial for his cancer and how they dealt with his cancer.

His outlook in May 2024: "The likelihood of me living to see another anniversary is low—probably under 20%—but not 0%."

Cancer is insidious in all kinds of ways. One in particular is that insight into the current and possible state(s) of a tumor are are really difficult to assess. With all our current imaging and testing capabilities, the human body is still largely a black box. Especially after multiple surgeries, distinguishing new tumour growth from scar and necrotic tissues is difficult.

And ... for suitably aggressive tumours, even what appears to be complete removal ("clean margins") ... often isn't, and what minuscule remnants remain can grow back with discouraging ferocity. I'd visited a friend a few weeks after they'd had a growth removed, and subsequently begun radiation treatments and chemotherapy. In that brief interval between surgery and treatment the lips of the incision had spread apart by several centimetres. That turned out to be an ominous portent.

Second-guessing is also par for the course, and without comparative study it's hard to know if more immediate or aggressive treatment (e.g., immediate chemo in Jake's case) might have helped. Looking up survival stats on particular cancers can be illuminating. The one which took my friend three decades ago still has a < 20% five-year survival.

My dad discovered he had a very large solid tumor (a form of soft tissue sarcoma) in 2022 and due to the lack of solid data or population size no oncologist could even give a hunch as to the growth rate. Whether it had been developing slowly for a decade before it finally became symptomatic over a few months, or the terrifying possibility it was extremely fast growing during the year or so he began to notice symptoms which suddenly emerged and then steadily got worse.

Due to lack of evidence for chemo having any benefit for his cancer with devastating impact on quality of life he was instead put into several months of proton radiation therapy, a Keytruda clinical trial, and then surgery all within about 6 months. After about 7 hours into surgery we got a call from the lead surgeon who told us they were unable to get clean margins due to proximity to the bone but spent an extra several hours removing all visible cancerous which was the best they could do before they had to hand it over to the reconstructive surgeon. That was a horrible gut punch and I can still picture the expressions on my brother and mother's face as we processed what we were hearing.

He survived the surgery, recovered impressively quickly, but we were all terrified waiting for the first 3 month follow up scan expecting the worse given the lack of margins and potential of being extremely fast growing. But it was clean, and so was the next 3 month, and he's now through his 7th or so clean scan I believe.

I had read so much about survival rates but the data for his specific cancer was all so poor plus confounded by his tumor being huge (data says that's very bad) but no systemic spread or to adjacent organs (data says that's very good), no clean margins (bad) but no remaining tumor tissue (less bad).

Eventually I realized all the time I spent digging through PubMed for any scrap of a data point hadn't actually given me any insight, reassurance or had any predictive value whatsoever. Which was tough to accept given how my brain is wired. So all I can really do now is be grateful for the extra time he's already had and the possibility that seemed so unlikely pre-surgery that he may even have many more, but the future will always be unknowable either way and not worth obsessing about.

It sounds like the reading helped you, though. Maybe it gave you a purpose or it focused your worry into something that felt productive. Either way, you would only be able to conclude that the reading wasn't productive by doing the reading.

Basically, I understand and sympathize with why you went down that rabbit hole. I have gone down those rabbit holes for far less compelling reasons.

Also, I have similarly concluded that medical literature's probabilistic nature means it has little bearing on the N=1 of a personal medical issue.

Glad to hear your dad is an outlier. Here's to more clean scans!

Thanks! and yes I think you’re right that it did help to occupy my mind at least. By the end when I hit a wall unable to find anything new it just made me look back in a more negative light than was actually true at the time.

Having gone through similar exhaustive research myself in the past, and undoubtably in the future as well ....

... one thing that such an exercise does do is to give you some reassurance that you're not letting anything slip by. That you did what you could, and that you found all available best current information.

Sometimes all that provides is a negative result, or a neutral result, e.g., "there's nothing more that we can do".

But at least you know that having done so, which may bring its own comfort.

I still periodically do scans on literature of a decades-old experience I'd been proximate to. Then, in the moment, there was always the hope for some incipient breakthrough. What I've learned is that years and years and years later there really hasn't been, and the principal chemotherapies actually date to WWI chemical warfare agents. (Medical history is ... weird.)

Another viewpoint is that it might be possible to marshal effort into research on some condition or another. I've also seen some of those attempts, often with great fame and fortune behind them (Reeves on spinal injuries, Fox on Parkinsons, amongst the better known). These have made some progress, but often only marginal and slowly over time. Other instances, notably of infectious disease, have been more profound (polio, smallpox, HIV/AIDS, cervical cancer, ...).

Predicting where and when breakthroughs might occur is desperately hard.

Thanks for that perspective, I now realize in my mind I completely glossed over the fact that my dad ultimately got proton therapy instead of traditional radiation because of my research. I found a paper comparing proton vs gamma radiation for soft tissue sarcomas and went down a rabbit hole. His oncologist at OHSU was very supportive of the idea and it all seemed to perfectly fall in line with my coping strategy believing technology had to have advanced somehow somewhere and we just needed to find it.

No way to know for sure whether that actually improved his quality of life vs gamma or was more effective but I believe it had to have helped and gave him and us more confidence he was getting the most cutting edge treatment modern medicine had to offer.

My dad was an early adopter of basically every technology trend going back to the first handheld sized cell phones and I could tell it gave both him and I some comfort being able to endlessly read about this brand new promising tech. And gave him some new optimism he might not inevitably lose his entire quality of life like his mother’s last few years of miserable chemo before her cancer ultimately killed her. The combination of Keytruda and proton radiation took a toll on him but he was still able to keep up with his routine of jogging and swimming a couple times a week which meant a lot to him.

Looking for proton centers then led my parents to the Fred Hutch Cancer Center in Seattle [1] who both had a proton therapy center and were conducting research on soft tissue sarcomas which led to enrolling him in the Keytruda trial that was desperate for eligible patients almost overnight.

My parents felt so much more trust and confidence there vs his original OHSU oncologist who made of point of emphasizing that my dad’s subtype of cancer wasn’t something they really had experience with or a specific treatment plan beyond the generic cancer treatment checklist.

I guess I ultimately did find something tangible and my medical techno optimism wasn’t purely escapism. So maybe it wasn’t as futile as it felt by the end, re-reading the same research over and over for months on end and still unable to form a mental model of the severity and most likely outcomes/survival odds for my dad.

[1] https://www.fredhutch.org/en/patient-care/treatments/proton-...

I'm interested in his vague comments about age and how saying age is just a number is coping. Do you know what he might be referring to in his life, or of any posts he's made where he talks about that sort of thing?

The earlier posts wishing for more aggressive treatments in the past should be read in conjunction with later posts about the realities of overtreatment.

Specifically, the post titled "More isn’t always better: death and over-treatment as a downside of agenticness" https://jakeseliger.com/2024/07/29/more-isnt-always-better-d...

One of the difficult realities of cancer treatment is that everything comes with tradeoffs. It can be frustrating to work with doctors who aren't eager to apply every possible treatment at the earliest possibility, but those doctors also know the downsides and risks of those same treatments.

As I'd noted above, I think that's the most valuable and insightful article of Jake's series. Some really powerful messages, both on the medical side (what does and doesn't work, and how and why) and the psychological one (people in desperate circumstances virtually always cling to hope and agency).

(I'm wanting to do a proper write-up of that but am still organising my own thoughts. Meantime I can just strongly urge people to read the piece.)

> Not looking into that thing on my tongue in July 2022, when I first noticed it, but that is very specific to me and probably not generalizable... I got a partial glossectomy in Oct. 2022

This one hits close to home. My dentist at the time misdiagnosed tongue cancer as a “reddish lesion, w/ possible tongue biting,” and this was only after I pointed it out to him at the end of a routine appointment. It wasn’t correctly diagnosed until further prodding from me 3 months later. By some estimates, that delay increased my chance of death by 30%, and the cancer has since progressed from stage 2 to stage 4.

How old was he ?

Far too young.

Only 40

With regards to the mention on Tabarrok's post, her piece on FDA deregulation should be highlighted, I think:

https://bessstillman.substack.com/p/the-drugs-killing-dying-...

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