5 ms·

In an August 2023 post about regrets, https://jakeseliger.com/2023/08/12/regrets/ https://jakeseliger.com/2023/08/12/regrets/, his last regret is: * Not lo

by canucker2016 2y ago

In an August 2023 post about regrets, https://jakeseliger.com/2023/08/12/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-healthcare-costs-or-is-keeping-me-alive-worth-it/ 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-the-more-things-going-wrong/ 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-of-my-total-glossectomy/ 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-cell-carcinoma-and-the-treatments-that-might-save-me-are-just-out-of-reach/ 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-lives-at-the-end-what-counts-what-matters/ 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-married-to-a-dying-man/ 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%."

dredmorbius 2y ago
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.
- ewoodrich 2y ago
  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.

dredmorbius 2y ago

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.

ewoodrich 2y ago
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.