Healthcare phrases, translated:
"Running a little behind" 👉 see you in 90 minutes
"Next available appointment" 👉 pick a season
"We'll call you with results" 👉 check the app
"Prior authorization pending" 👉 your insurer is buying time
"This is not a bill" 👉 the bill is coming
What's one I missed?
"Running a little behind" 👉 see you in 90 minutes
"Next available appointment" 👉 pick a season
"We'll call you with results" 👉 check the app
"Prior authorization pending" 👉 your insurer is buying time
"This is not a bill" 👉 the bill is coming
What's one I missed?
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Healthcare is the only industry that drops your cancer scan results into an app at 11 PM on a Friday, then closes for the weekend.
No call. No context. Just a PDF full of words like "suspicious" and "cannot be excluded" and a little banner that says "Sleep well!"
Meanwhile ours 😐
No call. No context. Just a PDF full of words like "suspicious" and "cannot be excluded" and a little banner that says "Sleep well!"
Meanwhile ours 😐
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This post was mostly to poke fun at the gap between patients receiving records and talking to a physician. Pros and cons of it as I've learned from reading through the comments and talking with people.
BUT THIS JUST SEEMS TO BE COMPLETELY FUCKED UP. Still trying to understand the incentive structure behind the system....that leaves a patient in this position.
x.com/kevinace/statu…
BUT THIS JUST SEEMS TO BE COMPLETELY FUCKED UP. Still trying to understand the incentive structure behind the system....that leaves a patient in this position.
x.com/kevinace/statu…
My dad spent 4 nights in a hospital bed. Medicare says he was never there.
He was on "observation." Technically an outpatient. And Medicare only covers rehab after 3 inpatient days.
So now his nursing home rehab costs $414 a day out of pocket. If he'd been admitted, his first 0.
Same bed. Same nurses. Different checkbox.
His wife is moving into assisted living. He's too weak to go with her. So he rehabs alone, paying by the day.
If your parent is in the hospital, MAKE SURE to ask one question: "Is he admitted, or on observation?"
Anyone gotten this fixed after the fact? What would you do first?
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My dad spent 4 nights in a hospital bed. Medicare says he was never there.
He was on "observation." Technically an outpatient. And Medicare only covers rehab after 3 inpatient days.
So now his nursing home rehab costs $414 a day out of pocket. If he'd been admitted, his first 0.
Same bed. Same nurses. Different checkbox.
His wife is moving into assisted living. He's too weak to go with her. So he rehabs alone, paying by the day.
If your parent is in the hospital, MAKE SURE to ask one question: "Is he admitted, or on observation?"
Anyone gotten this fixed after the fact? What would you do first?
He was on "observation." Technically an outpatient. And Medicare only covers rehab after 3 inpatient days.
So now his nursing home rehab costs $414 a day out of pocket. If he'd been admitted, his first 0.
Same bed. Same nurses. Different checkbox.
His wife is moving into assisted living. He's too weak to go with her. So he rehabs alone, paying by the day.
If your parent is in the hospital, MAKE SURE to ask one question: "Is he admitted, or on observation?"
Anyone gotten this fixed after the fact? What would you do first?
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Inverse hot take on my hot take: the gap between results and seeing the doc is a GOOD thing.
It gives me time to research, prepare questions, and get great answers.
And if I get the results from the doc? Panic, emotional reaction and shitty questions. I end up doing my own research at home without a physician to discuss them with.
It gives me time to research, prepare questions, and get great answers.
And if I get the results from the doc? Panic, emotional reaction and shitty questions. I end up doing my own research at home without a physician to discuss them with.
Healthcare is the only industry that drops your cancer scan results into an app at 11 PM on a Friday, then closes for the weekend.
No call. No context. Just a PDF full of words like "suspicious" and "cannot be excluded" and a little banner that says "Sleep well!"
Meanwhile ours 😐
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While you're here, you might be interested in seeing some crazy shit I'm trying to do...like cure my own cancer. GL to me.
x.com/kevinace/statu…
x.com/kevinace/statu…
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I'm getting a lot of "It's the law that results release instantly." News to me tbh, didn't know.
But great. My CT results got a federal law. My oncology appointment got "next available is in 2 weeks" 🤷♂️
But great. My CT results got a federal law. My oncology appointment got "next available is in 2 weeks" 🤷♂️
Healthcare is the only industry that drops your cancer scan results into an app at 11 PM on a Friday, then closes for the weekend.
No call. No context. Just a PDF full of words like "suspicious" and "cannot be excluded" and a little banner that says "Sleep well!"
Meanwhile ours 😐
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The best time to use my cancer vaccine might be right now, while I don't need it.
I'm building a personalized mRNA vaccine for my own lung cancer. The question isn't whether to do it. It's when.
OPTION 1
Go now, while I'm stable. My immune system is in the best shape it'll be. ut I'd be adding an unproven treatment while my pill is still working.
OPTION 2
Wait until my pill stops working. And it will. They all do.
Then I'll know I need it. But I'd be starting from behind, with more cancer and less time. And maybe then, I can't wait for the vaccine manufacturing and need to start another treatment, including one that could prevent us from doing the vaccine all together.
Oncologists will give their own perspective but nothing definitive. I can dive deep with the latest LLM models but not end up in a position of clarity.
There's no right answer. There's no clear path. This is the struggle that happens behind the scenes with cancer patients worldwide.
I'm building a personalized mRNA vaccine for my own lung cancer. The question isn't whether to do it. It's when.
OPTION 1
Go now, while I'm stable. My immune system is in the best shape it'll be. ut I'd be adding an unproven treatment while my pill is still working.
OPTION 2
Wait until my pill stops working. And it will. They all do.
Then I'll know I need it. But I'd be starting from behind, with more cancer and less time. And maybe then, I can't wait for the vaccine manufacturing and need to start another treatment, including one that could prevent us from doing the vaccine all together.
Oncologists will give their own perspective but nothing definitive. I can dive deep with the latest LLM models but not end up in a position of clarity.
There's no right answer. There's no clear path. This is the struggle that happens behind the scenes with cancer patients worldwide.
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Another twist is the only biopsy where we could get data to advise on vaccine design was from January 2026. So I'd be starting vaccine treatment in early 2027 on early 2026 data.
If I wait until progression, we can likely do a biopsy and get fresh data to create a vaccine more likely to succeed.
Tough one!
If I wait until progression, we can likely do a biopsy and get fresh data to create a vaccine more likely to succeed.
Tough one!
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The FDA APPROVED this lung cancer pill in July 2025.
You couldn't buy it in America until THIS WEEK.
Not a safety issue. Not a science issue. The drugmaker just had no US sales setup. So an approved cancer drug sat in limbo for 15 MONTHS while the business side figured out who gets to sell it.
Meanwhile this woman's cancer was metastasizing in her brain.
So her son said screw it, flew to Shanghai, and came home with 26 boxes of cancer pills in his luggage.
I take a targeted lung cancer pill every day. If mine was stuck in paperwork hell, I'd be on the next flight too.
Would you fly? Or wait politely for the paperwork?
You couldn't buy it in America until THIS WEEK.
Not a safety issue. Not a science issue. The drugmaker just had no US sales setup. So an approved cancer drug sat in limbo for 15 MONTHS while the business side figured out who gets to sell it.
Meanwhile this woman's cancer was metastasizing in her brain.
So her son said screw it, flew to Shanghai, and came home with 26 boxes of cancer pills in his luggage.
I take a targeted lung cancer pill every day. If mine was stuck in paperwork hell, I'd be on the next flight too.
Would you fly? Or wait politely for the paperwork?
26 boxes of cancer pills. Carried home from Shanghai.
Debbie Doppelt, 60, had lung cancer with 10 tiny tumours in her brain. The drug that could help, sunvozertinib, is made by Dizal in Shanghai.
Approved in China in 2023.
FDA approval July 2025.
Still not on sale in the US as son Max flew to China and bought a supply for about $10,000.
One doctor told the family: "Too bad she's not Chinese ... She could go to a pharmacy in China and buy it."
At least 30 Americans have made similar trips, KFF Health News reports. China accounted for up to 46% of new drugs tested worldwide last year.
Honestly I find this one hard to read. Western media still frames Chinese biotech as a "threat". Patients see it differently, they just need the medicine.
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77,000 of you saw this. Almost none of you got the bot, because I linked the wrong page. WHOOPS
Here's the real @bot. It finds clinical trials for your cancer, like the one it found me an hour from my house that I would have no clue about otherwise...and I'm pretty on top of all this shit.
x.ai/bot/liwVNZ8sQX…
Here's the real @bot. It finds clinical trials for your cancer, like the one it found me an hour from my house that I would have no clue about otherwise...and I'm pretty on top of all this shit.
x.ai/bot/liwVNZ8sQX…
My @grok @bot found a clinical trial for my stage 4 lung cancer an hour from my house. I never would have known about it on my own.
I'd been interested in a trial for a new ALK drug called TRI-611, but not if it meant flying across the country over and over. In September the ity of Cincinnati as a site, and my bot caught the change. It also flagged an eligibility question for me to take to my oncologist.
Before this I was passive. Maybe I'd stumble on something on X, maybe my oncologist would mention something (he hasn't), and my ALK+ patient group on Facebook was probably the most reliable source. Nothing was guaranteed, and I definitely wasn't hearing about trials adding new locations.
Now it checks for me every morning, and I'm tracking more than 25 options, from personalized vaccines to next-gen ALK drugs, sorted by how relevant they are to me and when they'd make sense. The whole game is curation...the more it knows about your diagnosis, the more it finds signal instead of noise.
1. Teach it your diagnosis. Mine knows my cancer type, stage, every treatment I've had, my biomarkers, and how far I'm willing to travel. Trials include or exclude people based on exactly these things.
2. Tell it what to do. Mine checks clinical trial listings, FDA decisions, conference abstracts and company news, compares it all against the day before, and only pings me when something new and sourced shows up.
3. Review what it finds. I read the source, then run it past Grok, which both know my history, to decide whether it's useful and when. Then it goes into my tracker in Notion (below). More on that part in another post soon.
It gives me hope, too. Even when I'm not eligible, seeing new companies form and new trials open every week reminds me how fast this field is moving.
I turned my setup into a template so any patient or caregiver can build their own. It asks about the diagnosis, travel limits, and where to keep results, then builds the watch around the answers: x.ai/bot
Thank you @SpaceXSI @elonmusk for building this.
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@bot Link in the post isn't very noticable so if you missed it, here's a big ass one with an image
x.ai/bot/liwVNZ8sQX…
x.ai/bot/liwVNZ8sQX…
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Your condition doesn't come with a research team. Now it does. I built a Grok Bot that sends what's new for any diagnosis, sourced and in plain English. x.com/i/article/2113…
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Every cancer patient knows this text:
"Hey! Saw this on a podcast. Have you tried [thing]?"
Turmeric. Baking soda. Fasting. Some guy's cousin's cure that "Big Pharma is hiding."
I know you mean well. I REALLY do. But please hear me:
My doctors have read the studies. I've read bly heard of your thing. If it worked, I'd already be doing it, because I'd do ANYTHING to see my kid grow up.
Here's what it does to someone who isn't as stubborn as me:
1) It sells false hope to people who are desperate.
2) It makes them feel like they're not trying hard enough.
3) It makes them feel like their cancer is THEIR FAULT for not finding the miracle.
That's not help. That's homework.
So what DO you say to someone with cancer?
- "Want me to drive you to your scan?"
- "I'm dropping off dinner Thursday."
- "Want to watch something dumb and not talk about cancer at all?"
That's it. Show up. Skip the podcast.
And if you really can't help yourself, send the link to their oncologist. Not them. 🙃
"Hey! Saw this on a podcast. Have you tried [thing]?"
Turmeric. Baking soda. Fasting. Some guy's cousin's cure that "Big Pharma is hiding."
I know you mean well. I REALLY do. But please hear me:
My doctors have read the studies. I've read bly heard of your thing. If it worked, I'd already be doing it, because I'd do ANYTHING to see my kid grow up.
Here's what it does to someone who isn't as stubborn as me:
1) It sells false hope to people who are desperate.
2) It makes them feel like they're not trying hard enough.
3) It makes them feel like their cancer is THEIR FAULT for not finding the miracle.
That's not help. That's homework.
So what DO you say to someone with cancer?
- "Want me to drive you to your scan?"
- "I'm dropping off dinner Thursday."
- "Want to watch something dumb and not talk about cancer at all?"
That's it. Show up. Skip the podcast.
And if you really can't help yourself, send the link to their oncologist. Not them. 🙃
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And if someone you love just got diagnosed, this is the stuff that actually helps.
x.com/kevinace/statu…
x.com/kevinace/statu…
When someone DMs me "my mom just got diagnosed, where do I even start?" this is the kind of info I send them
Everything I'd do first if cancer hit my family tomorrow: the tests, the trials, second opinions, and the people who helped me most. x.com/i/article/2113…
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One of the best lung cancer doctors in the world told me my cancer pills had stopped working and wanted me on chemo. I said no. Here's why I'm glad I did.
My first cancer pill had stopped working. We switched to a new one and hoped.
Less than 4 weeks later, I'm in the exam room .
My oncologist walks in. The look says it before the words do.
"The cancer is still growing. This new pill may not be working either. I think it's time to talk about chemo."
A few days later, I get on the phone with one of the most respected lung cancer specialists in the world.
Same answer. Chemo.
Everything in me wanted to say yes. These are the experts.
But something didn't add up.
"Has it been long enough? What if that growth happened before the new pill kicked in, and it's already stopped it?"
Silence.
"I want to wait a month and scan again."
"You understand the risk. If you're wrong, it could grow. It could spread."
"I understand."
Then came the month from hell.
A new pain showed up around my left lung. In my head, it was the cancer, no question. Then my kid brought a cold home from school and I couldn't stop coughing.
Pain. Cough. Waiting. Every night I wondered if I'd just made the worst decision of my life.
Then the next scan came back.
No growth.
The cough was just a cold. The pain turned out to be a delayed side effect from the radiation I'd had back in the spring (that's me on the table).
Had I not pushed back, I'd be on a chemo drip right now.
This isn't a knock on my doctors. They're brilliant and they've kept me alive. But even the best in the world are making calls with incomplete information.
And this isn't just a cancer thing.
A knee surgery. A new prescription. A "let's just keep an eye on it." Any time a doctor recommends something, you're allowed to ask:
"Has it been long enough to know?"
"What happens if we wait?"
"What are my other options?"
"What would you do if it were you?"
Good doctors welcome those questions. You're the one living with the answer.
Next scan is December 3. I'll share it.
My first cancer pill had stopped working. We switched to a new one and hoped.
Less than 4 weeks later, I'm in the exam room .
My oncologist walks in. The look says it before the words do.
"The cancer is still growing. This new pill may not be working either. I think it's time to talk about chemo."
A few days later, I get on the phone with one of the most respected lung cancer specialists in the world.
Same answer. Chemo.
Everything in me wanted to say yes. These are the experts.
But something didn't add up.
"Has it been long enough? What if that growth happened before the new pill kicked in, and it's already stopped it?"
Silence.
"I want to wait a month and scan again."
"You understand the risk. If you're wrong, it could grow. It could spread."
"I understand."
Then came the month from hell.
A new pain showed up around my left lung. In my head, it was the cancer, no question. Then my kid brought a cold home from school and I couldn't stop coughing.
Pain. Cough. Waiting. Every night I wondered if I'd just made the worst decision of my life.
Then the next scan came back.
No growth.
The cough was just a cold. The pain turned out to be a delayed side effect from the radiation I'd had back in the spring (that's me on the table).
Had I not pushed back, I'd be on a chemo drip right now.
This isn't a knock on my doctors. They're brilliant and they've kept me alive. But even the best in the world are making calls with incomplete information.
And this isn't just a cancer thing.
A knee surgery. A new prescription. A "let's just keep an eye on it." Any time a doctor recommends something, you're allowed to ask:
"Has it been long enough to know?"
"What happens if we wait?"
"What are my other options?"
"What would you do if it were you?"
Good doctors welcome those questions. You're the one living with the answer.
Next scan is December 3. I'll share it.
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