Just taking the opportunity to chime in on this thread: Do not hesitate to press for a colonoscopy or sigmoidoscopy if you are worried about your colon health.
Something is going on now where demographically much younger patients are getting polyps and colon cancer: https://www.cancer.gov/news-events/cancer-currents-blog/2020...
Doctors are still mostly operating under the old wisdom that it is not a problem for those under 60 or so.
I had blood in my stool at 36, and after convincing my doctor that I wanted it checked even if it was 'probably a hemorrhoid', a sigmoidoscopy found 3 polyps.
I was lucky that the big one was right at the 'front door' so to speak, otherwise the sigmoidoscopy would have not been deep enough to find them, and I might not be writing this comment today.
Absolutely, when TotalBiscuits (John Bain) was still fighting cancer he couple times unabashedly said while doing his live starcraft 2 esports casting to everyone listening to be mindful of colon cancer, to not play dumb with it if you consistently find blood in your stool and go get yourself checked, insist on it if the doctors seem not particularly concerned
> In late April 2014, Bain announced he had a precancerous mass in his colon, the first indications of bowel cancer, a condition with which two of his grandparents had also been diagnosed. (wikipedia)
It's good to promote diagnosis, but let's also put this in perspective: he had family history of this kind of cancer. This kind of changes everything when it comes to your personal risk, just like your grand parents having Alzheimer indicate a major risk that you will get it as you age as well.
This is why (good?) doctors also ask for conditions running in families.
Thanks for reiterating this. In the end, what we leave behind is the love we gave others and the wisdom we bestow. Hoping they learn sooner than us, and benefit.
This concept behind earlier screening is a whole thing amongst medical professionals, and a point of controversy in a number of specialties.
As with most things, procedures have risks and benefits. Colonoscopies have risks too, right? Bowel perforation (bad news), bleeding, infection, etc. So, balancing that with the obvious benefit of catching cancers early, the USPSTF (United States Preventive Services Taskforce) made some recommendations on when patients should undergo screening for colon cancer.
As of right now, per their highest level of evidence recommendations, you should get a colonoscopy starting age 50, and every 10 years thereafter. Note, I said colonoscopy. Not sigmoidoscopy, not stool testing, etc. Those have different guidelines and intervals (but do still start age 50).
If you have family history of colon cancer, or certain diseases that put you at higher risk for colon cancer, the recommendations are significantly earlier. In the case of a positive family history, you get a colonoscopy age 40 or 10 years before the earliest colon cancer diagnosis in the family, whichever comes first.
The reason I bring all this up is to point out that if you go to the USPSTF web site, you'll see an evidence level B recommendation to start screening age 45 as well. You'll also find the American Cancer Society has colonoscopies starting age 45.
The evidence and safety for colonoscopies at earlier and earlier ages is getting better and better. Doctors should absolutely be screening well before age 60. If your doctor isn't following uspstf guidelines due to practicing outdated medicine (some variation due to personal preference/evidence based practice I guess is acceptable), in my not so professional opinion you should probably find a new doctor.
“ The use of capsule endoscopy of the colon allows visualization of the colonic mucosa in most patients, but its sensitivity for detecting colonic lesions is low as compared with the use of optical colonoscopy.”
It still seems pretty rare, even if it's more common. I have had some similar symptoms, and similar interactions with doctors in the past. No, I don't think I have cancer. But, what I want to know is what is the probability of having this condition given the symptoms. In other words, use Bayes' rule. Most doctors seem incapable of thinking this way! If it's a 1% chance that I have a life-threatening condition because there's blood in my stool, then it makes sense to get diagnostic that would test for that. I know these datasets exist, but why can't my doctor make use of this, or me for that matter?
Rare doesn't really help when there are almost 8B people on the planet.
I was 41 when I was diagnosed with colorectal cancer. I had blood in my stool and my GP misdiagnosed me due to my age. If I hadn't pushed the issue, I wouldn't be here now.
If you ever have blood in your stool, get an exam. Preferably by a gastroenterologist.
Blood may not be present in sufficient quantity to be detected visually or not at all so keep looking out for other irregularities (being I'll is irregular). Examples: strange badly smelling diarrhoea (not one you might have after a having eaten something that was a little off) or burning sensation (which might get dismissed as a diverticulitis).
What I'm trying to say is that it's rare in the general population. Maybe it's common enough in the population of people that have certain symptoms, like blood in stool, that it really does deserve a strong response and not to be ignored by a doctor.
I’ve had tests done where false negatives ran 20+% this is well known. I had every single symptom of the condition.
Test came back negative. Doctor declared no issue, no reason to continue care.
A better doctor confirmed the diagnosis with additional tests.
Growing belief that a false negative may mean a worse variation of the disease.
Episode cost me an added year of organ damage.
The important part of this entire thread is that if you have symptoms, don't let the bell curve affect whether you seek treatment/exams from medical professionals. Colorectal cancer is no longer a rare thing in people under 50, and many practitioners operate under the naive idea that it doesn't occur in younger people.
In the next 15 years, more than one in 10 colon cancers and nearly one quarter of rectal cancers will be diagnosed in patients ages 20-34, according to the study. It also found that, in this age group, colon and rectal cancers are expected to increase by 90% and 124.2%, respectively, by 2030. For those ages 35-49, the predicted increase will be 27.7% for colon cancer and 46% for rectal cancer. Routine screening currently is not recommended for those under 50.
mind sharing how the blood in your stool looked like? What was the color etc? Was it there always? Was it occassionally? Was it ON the stool or mixed through it?
And when you finally got diagnosed. What stage were you in? Are you healed now?
I noticed bright red blood on my toilet paper periodically. I would ignore it a bit, then worry more when it re-occurred. After a month or so, I went to see my GP (I was 40 at the time). He thought it was just hemorrhoids. A year later my wife convinced me to go back and see what was up. I was referred a week later to my gastroenterologist who diagnosed me with a 5cm tumor. The path report showed that it was T2N0M0.
I'm fully healed now, though I have a permanent colostomy.
few more follow ups if you dont mind :-)
so there was no blood in or on the stool itself?
and what was the quanitity on the toilet paper? just a small stripe or a lot?
and how frequent was it throughout the year? monthly,weekly,daily?
Note there can also be blood that is not visible in your stool - (occult blood is the term). It's recommended to check for that on a regular basis and it's fairly easy to confirm their presence.
For my experience, noticed rich red blood at first collected in the bowl of the toilet, then started noticing streaks of blood on the stool, consistently there every time. I did put it of for 3 months, and I was diagnosed with stage 4 cancer, that had spread from my colon to the liver through my lymph nodes.
A few years ago there was a somehow public trend saying there was an epidemic of over diagnosis. People would have more medical exams like colonoscopy and would get treatment over the simplest signs and the effects were not good.
I don't know how true it is, but it may explain why docs in general refuse to go too early on exams.
I've heard of this issue with mammograms, but not with colorectal cancer. Complications from a colonoscopy are very rare, and removing polyps before they become malignant is a pretty safe choice as well.
Be sure to have a dialogue with your parents and siblings regarding your family history. My dad has a history of polyps, starting around 40. It's not something I would have known about without talking to him as it's just a regular part of his life to get them removed every few years. I had my first colonoscopy last year at 45 and had a polyp removed. If I didn't know my family history, I might have waited until the normal age of 50 and it might have been too late.
There are at-home screening tests you can get that are inexpensive and as accurate as colonoscopies in screening for cancer (according to some ways of measuring).
Some of these can be ordered without a prescription online. So if you want to get screened and can't justify or afford a colonscopy, these are worth checking out.
Same here; had a large tubulovilous adenoma removed a couple years ago, at just about the same age. It wasn't cancerous, but it probably would have been soon if left to its own devices.
In my case it's probably genetic. My grandmother survived cancer by having part of her colon removed. She had a bunch of siblings who all died of cancer or undetermined causes; the difference is that she went to the doctor and they didn't.
I went through stage IV colon cancer in 2020 at age 37. Just had my 3-month follow-up CT scan today, actually. I had 3 surgeries (colon resection, port installation, liver resection & ablation), 12 rounds of chemo (FOLFOX + Vectibix), 9 before liver surgery, 3 after. I had plenty of fatigue and cold sensitivity in my extremities. I have some peripheral neuropathy maybe 9 months in, and continuing. It was worse, but improved some. It could take up to a year to go away, if ever. Theoretically, I'm in remission or "no evidence of disease" (NED).
One thing I haven't seen mentioned yet is that being diagnosed with cancer can give you some anxiety. Doctors can prescribe an anti-anxiety medicine like escitolopram to take care of it. Having a clear head during a hard time can help you make better decisions, ask better questions, and get better care.
If you've been diagnosed with cancer and want to talk, email me: [redacted].
I just want to add a somewhat different view here. I had cancer when I was 30 (testicular cancer). Healthy today luckily. But everyone said I was taking it very well and clear headed and I think so too if I have to say so myself but some years later I had a massive panic attack and started having huge problems with anxiety and panic attacks. It got so bad all I could do for weeks were to sit in my sofa being scared I was sick and dying from cancer, not quite awake but never quite sleeping either. It came at first because I had blood in my urine (had it checked, nothing wrong, gone again) but the attacks became a returning pattern at the same time every year. The differing view is that unlike GP I already were on Escitalopram at the time I had cancer. I later found out that there is a massive problem with people getting anxiety and panic attacks while on escitalopram and a lot get cured after having stopped, including me.
Please do see a doctor and educate yourself if you have symptoms like blood in your stool, urine or if one testicle have a lump or feels slightly harder (internal tumour) but also educate yourself before taking any medication! It may save your life taking it but it may also ruin it.
Edit to add:
Also remember that cancer often doesn't hurt at all (at first) so don't be one of those that don't go to the doctor because it doesn't hurt. Not having pain is often A Bad Sign. Off you go!
> I later found out that there is a massive problem with people getting anxiety and panic attacks while on escitalopram
People having issues like that with escitalopram are a small portion of the people for whom it’s a life-changing treatment for anxiety and depression. I put off getting on it for far too long because of scare stories.
Having had almost the same everything, and now almost 2 years cancer free, the neuropathy did take some time to disappear. Don't know if it disappeared or my body got used to it, but do not notice it anymore. Best of fortune in the future.
Having had almost the same history and chemotherapy, the cold sensitivity and neuropathy is cause by platinum based drugs, in this case oxaliplatin. The cold sensitivity is quite fascinating i found, its like your skin reaching a threshold and feels like pressing against some cold metal.
As for the fatigue, just the chemotherapy doing its stuff, never had fatigue from the cancer.
Ahh ok. I’ve been experiencing sporadic peripheral neuropathy and cold sensitivity for years, which my doctor has been unable to diagnose, so I was just curious if it might be a symptom of something else somehow.
The absurdity of the American health care and insurance system will never not amaze me. It's just sad and weird, and even weirder that you will always find a bunch of intelligent folks to defend it.
Wishing the author, who btw is a better writer than most writers, a speedy and complete recovery.
It's so cruel that it's hard for me to call it absurd. For instance this part from the article:
Instead, insurance wants to make sure that you really-super-duper-need
whatever it is they're going to give you, to the point where there's
basically no way they can say no.
is directly connected to this part:
And, then, when my company switched insurance providers at the beginning
of 2021, this nurse service stopped abruptly.
Insurance companies are financially incentivized to not only say "no" to covering treatment but also just to kick the can down the road a bit. The later in the year that they reject an approval the higher the chance that you'll:
1. have to cover part of it in January when your deductible resets,
2. have to pay more toward it than you would when your plan invariably gets more expensive in January,
3. it will be some other insurer's responsibility by then,
4. you die before you incur any more treatment costs.
It happened with my mother and her chemo for stage 4 colon cancer. She hadn't worked in years due to being laid off, not having a degree, having an extremely sick child (me) to care for. So she's temporarily working for my father, enough hours to get insurance. But dads company just switched insurances specifically because of the cost of her treatments and now they're drrrraaaaaaaagggggging out the process of getting much needed new chemo as it has grown back. It's easy to look at the situation and assume they're honestly just trying to kill her before they pay. As well it's a drug that would cost over $100,000 for a single course if she were to acquire it with no insurance.
Another point is that our insurance systems are so needlessly complex that there is no single person or pair of people that understand what's actually going on. If the insurance is denying you get trapped in a continuous loop of appeals, approves, offices, pharmacies, prescribers, etc. and no one is able to tell you 1. Why they're denying you 2. What exactly you need to do to not fucking die.
Im sorry but the system had become both absurd and cruel. I keep trying to remind myself that 80 years ago they wouldn't have been able to save her if they tried. It's still better. But to see this carrot perpetually yanked further and further away from you as you slowly lose your ability to keep up or keep going. And then, as the last light dims from your eyes, to see someone sprinting the carrot back to you and attempting to help you as best they can even though you're nearly past the brink.
That is the story I've learned.
Our system does have success stories. It is better than nothing. But any system that has the capacity for such inhumane cruelty in the face (in spite) of genuine humans trying to help sets a dangerous precedent for the future of its society.
> The insurance company even assigned me a nurse to "check in on me" as a resource back in November and December, which sadly was more of a nuisance than anything else.
Sadly but at least that's all it was. These nurses will try to FUD you out of critical treatments, or "suggest you ask your doctor" if they're sure something is really covered. I nearly had a major treatment go seriously off the rails where I'd need to go to another hospital, before my doc's hospital was like, "wait, no, there's no problem, that's totally covered."
They spam you constantly on the phone too even once you're hip to their game. Stay away.
It makes me so glad to be under the care of the NHS.
It isn't even about the money, I could afford the $3k out of pocket too, it's more about not having to be a "customer" who has to frequently make choices or shop around.
It's also a relief not having to think about the money or insurers. I don't need to collect receipts or bills or phone insurers or providers, I can focus 100% on getting through my chemo.
I haven't had to fill in a single form except the occassional consent form since diagnosis, and to me that's worth every penny of tax I've ever spent.
We have a public health system in NZ, i.e. free healthcare.
We also have private health insurance, 30-40 percent of the population take that up.
When you go public you will need to wait in a longer line, you won't get the flowers next to your bed and you might need to ring for a bit longer for a nurse to come, but you'll often be seeing the same doctor you would have seen going private.
Last time I was in hospital the only paperwork was the admission form, and then telling the desk people my insurance number as I left.
I know that love of the NHS in the U.K. is a religion but the truth is the quality of cancer care you will receive is lower, there’s less preventative testing, and longer wait times. All of that means you’re way more likely to die of cancer under the care of the NHS than the American healthcare system.
I think it's hard to compare the two health systems purely on their data as there is a culture of healthcare that it is difficult to factor in.
E.g. how many people don't go to hospital and then die in the US because they cannot afford healthcare? I witnessed this first hand in New York when somebody was knocked out and as I was dialling 911 they woke up and shouted not to call an ambulance because they couldn't afford the cost.
Equally, understand that the NHS does not have the funding that the US healthcare system and that wait times are generally longer.
And yet all the things you mention are only important for 5 year survival rates. They don't seem to make much difference to all cause mortality.
This means Americans are paying lots of money for treatment that lowers quality of life, can have serious side effects and unintended consequences, and which is mostly not allowing them to live longer.
There's less diagnosis for sure, but wait times for actual treatment has been absolutely amazing in my experience.
The diagnosis took way longer, in the US I'd have likely been diagnosed months earlier.
However, I was diagnosed on a Thursday, started steroid treatments by Monday in preparation for starting full treatment a few days later, and also went from an PET/CT scan to having radiotherapy just 3 days later.
I'd be wary of looking too deeply into survival statistics, especially since the much greater emphasis on diagnosis means that a lot of the cancers treated in the US are an earlier stage which is reflected in the survival statistics.
It's also important to consider that there aren't people made homeless through medical debt in the UK. There aren't people who avoid going to the doctor because they feel they can't afford it (regardless or whether they could with the appropriate allowances etc).
It's not a "religion", it's just experience of 70 years of fully public healthcare which is reflected in things like our vaccine rollout which when compared to our neighbours we have been miles ahead.
Even those countries with socialised healthcare but private provision (public insurance + private provision) have massively lagged behind because having a single provider of healthcare has been monumental in coordinating a massive vaccination effort, and as a result the UK is almost top of the per capita vaccination rate with only the much smaller Israel and Bahrain above it.
But again, I can't stress how good it is that I don't have to worry about my wallet when getting treated.
I was able to change jobs even while undergoing treatment because I didn't have to worry about losing access to health insurance. I may be wrong but if I were working the US I'd feel trapped in my previous job because I'd have been worried about not being covered for a time.
The TLDR is that I value living in a society where the poorest and the middle class both have access to the same healthcare. (And yes, like other countries we also do have a private healthcare industry, which is popular especially for elective stuff.)
There’s plenty about it that’s defensible, the part that seems indefensible to me is the regulatory capture that leads to situations covered in the blog where insurance won’t cover cutting edge treatments. There’s a good argument to be made that deregulation would encourage innovation and lead to dropping prices and greater supply - why capitalism should stop working its usual magic when it comes to medicine is a mystery.
Plenty of single payer systems (like where I live in Canada) don't cover this stuff either. The difference is is in the US it's an insurance company saying "no" and in Canada it's the gov't saying "no". And actually, since it's one system, the doctors already know it's not covered so it never comes up.
Capitalism can't work its magic because healthcare is not a free market. It has a unique set of constraints that capitalism is particularly weak at dealing with: lack of choice (you don't get to choose which hospital you go to in a lot of circumstances), high barrier to entry, constantly changing regulatory environment, etc...
The reason single payer systems work is because they're at a specific advantage for all of the constraints that healthcare systems face, including a better overall incentive alignment.
> Capitalism can't work its magic because healthcare is not a free market.
That's exactly my argument, regulatory capture precludes a market from being free.
> It has a unique set of constraints
I fail to see how the points you list make it unique.
> lack of choice (you don't get to choose which hospital you go to in a lot of circumstances)
Then make that possible. I live in Japan, I choose the hospital/clinic/doctor that I see, for everything.
> high barrier to entry
For whom at with what?
> constantly changing regulatory environment
Yes, so deregulate and move towards a freer market.
> The reason single payer systems work
Do they? If you have a heart attack in the US vs one in the UK then you are more likely to survive in the US. Blanket statements about what "works" are meaningless when talking about complex systems with multiple outcomes across large populations. The US outranks many countries that aren't using its system in many health outcomes, and if you have insurance then you will get a very high standard of care. Poor health outcomes for those at the bottom are bad but that's only one way to measure efficacy.
Japan has a single payer insurance system but I can also point to many negatives, as well as many positives. None of these provide any refutation to a free(r) market providing the benefits that other markets receive.
> Then make that possible. I live in Japan, I choose the hospital/clinic/doctor that I see, for everything.
I don’t believe you will be choosing which hospital you go to if you’re unconscious, or facing a serious acute medical concern placing you in desperation. Coincidentally, those tend to be the times when costs also skyrocket.
—
The issue with treating healthcare like a free market is that some people just won’t get healthcare. Free markets aren’t going to build a hospital in a small enough town because the cost can’t be justified.
Your point that the US outranks most other countries is perhaps true for some things, but completely false for baseline measures such as infant mortality, life expectancy, cost per capita, etc. As a country the US can sometimes pull ahead on specialized care in part because of a prevalence of supporting technology compared to other countries, and I’ll grant that. But our system is hardly “better” than other developed nations on almost any objective measure.
> I don’t believe you will be choosing which hospital you go to if you’re unconscious, or facing a serious acute medical concern placing you in desperation. Coincidentally, those tend to be the times when costs also skyrocket.
Firstly, emergency treatment is a tiny sliver of all healthcare, in terms of volume and cost. If you want to argue about healthcare in general based on that - nay, on the miniscule number of unconscious people admitted to hospital - be my guest, "never interrupt your enemy when he is making a mistake" and all that.
Secondly, I think you should look into how the Japanese system works before making statements about it. Your beliefs are of no concern to truth or proper analysis, especially when they don't accord with reality.
> The issue with treating healthcare like a free market is that some people just won’t get healthcare. Free markets aren’t going to build a hospital in a small enough town because the cost can’t be justified.
The issue with treating computing like a free market is that some people just won’t get computers. Free markets aren’t going to provide computers to small businesses because the cost can’t be justified.
I think the 70s is calling and wants your argument back. Before you reply with "computing and healthcare aren't comparable" they are, in fact, incredibly comparable. Health is like computing power, the more you have the more you want and can do, and hence - due to demand and people seeking to satisfy that demand - the more you can get. Reading these forums it seems like a quite profitable endeavour that is unlikely to end soon, much like healthcare.
> Your point that the US outranks most other countries is perhaps true for some things, but completely false for baseline measures such as infant mortality, life expectancy, cost per capita, etc.
That is something we agree on because that is the accepted starting point of the discussion, not a refutation to anything I have written or proposed.
> But our system is hardly “better” than other developed nations on almost any objective measure.
Back to the black and white thinking.
It is better in several ways and yet I am not an advocate of it because it is not a free market so I might ask why you're responding to me as if I am an advocate of it, but that is black and white thinking in a nutshell so I won't.
The problem is how to get more and better healthcare to more people. Aside from the endless examples outside of healthcare, less regulated markets in healthcare have met these requirements. For example, cosmetic surgery and things like lasik, the quality has gone up, the costs have dropped, availability is widespread and even approach normal.
Computer has Moore's law, but healthcare hasn't. What is worse, it's labor-intensive work so very difficult to optimize even compared to other industry. Possibly robots can replace human but I don't think it moving forward without public health insurance. (Gov has incentive to develop technology to reduce healthcare cost)
Healthcare relies on Moore’s law. You’re also going to receive, this year, a vaccine that will be among the fastest ever developed. The number of services and treatments that didn’t even exist 10 years ago is increasing year on year, and the efficiency of them increases too - and would increase faster and hence become cheaper if they were deregulated.
> regulatory capture precludes a market from being free.
Yes, and healthcare is a good thing to regulate, you know, cause of all those pesky ethics and morals that get involved with human life.
brigandish 2 days ago | parent | on: Notes on My Chemotherapy
> Capitalism can't work its magic because healthcare is not a free market.
That's exactly my argument, regulatory capture precludes a market from being free.
> It has a unique set of constraints
>> I fail to see how the points you list make it unique.
If you can't seen why healthcare a specifically constrained market, you're being either intentionally obtuse or incredibly naive.
> I live in Japan, I choose the hospital/clinic/doctor that I see, for everything.
Yeah, I choose my dentist, too dawg, doesn't mean that I can choose what E.R. I get dropped off at when I get in a car wreck. I can't shop around for prices on concussion doctors when I'm unconscious in a gurney. Don't be obtuse. Sure, emergency services are only a small part of the pie, but they're the ones that bankrupt people. No one went bankrupt getting their contacts done, and dental and vision are frequently separated _for the exact reason_ that they're not ever medical emergencies, and when they are, they send you to a specialist anyway.
> high barrier to entry
>> For whom at with what?
This is starting to border on bad-faith. I'm not going to spell out every piece of my argument here. If you can't accept the premise that healthcare is a high barrier to entry market, then you're not familiar with the problem.
> constantly changing regulatory environment
>> Yes, so deregulate and move towards a freer market.
You can't just deregulate things and hope it'll fix it. de-regulate _what_? You haven't even proposed a solution here, you've just yelled "Free market!" and "Deregulate healthcare!" But all that will do is worsen the quality that we see and encourage a bunch of snake oil companies to become even more common.
> The reason single payer systems work
>> Do they?
Yes, the evidence says a resounding yes in basically every country, including the U.K., even when the NHS is underfunded. Like another poster pointed out, basically any base-line metric puts the U.S. in ranks with most third-world countries. It's embarrassing.
This is not Reddit or wherever you've been hanging out online up till now, so do not refer to me - or anyone else here - as "dawg", and try to find some basic respect for the people you're engaging with on HN.
In a thread where I've already warned about black and white thinking we have this:
> Yes, and healthcare is a good thing to regulate, you know, cause of all those pesky ethics and morals that get involved with human life.
Since when does deregulation mean to remove all regulations and laws? Then we have this:
> you're being either intentionally obtuse or incredibly naive.
Aside from more of the inability to show basic respect we've already touched on, it's like a parody of black and white thinking with the invidious false dilemma, but it doesn't end there:
> Yes, the evidence says a resounding yes in basically every country, including the U.K., even when the NHS is underfunded. Like another poster pointed out, basically any base-line metric puts the U.S. in ranks with most third-world countries
Imagine turning a complex issue into this statement. It's not beyond parody but it's approaching that point.
> This is starting to border on bad-faith.
No, it's not. You continue about how you're unwilling to spell out your argument and then, further into your response, continue by saying that I'm "just yelling" without expanding on my points.
a) I'm not yelling. No one is yelling. Try not to react emotionally to those who disagree with you and/or project emotions onto them that they haven't at least alluded to.
b) If you're unwilling to state your argument clearly and succintly then it is hypocritical to accuse others of also not doing so (and you're incorrect anyway, so it's blatant hypocrisy).
> If you can't accept the premise that healthcare is a high barrier to entry market, then you're not familiar with the problem.
I'm not going to accept the premise until you state the reasoning behind the premise. Perhaps you react the way you have because you're unused to being challenged. If so, you shouldn't engage in discussion on the internet, and certainly not here.
Regardless, let's answer some of these from the absurd straw man you've perpetrated, and hopefuly, afterwards, you'll take some time to acknowledge the benefits of not reducing everything down to binary, childish imitations of an argument.
> > I live in Japan, I choose the hospital/clinic/doctor that I see, for everything.
> Yeah, I choose my dentist, too dawg, doesn't mean that I can choose what E.R.
I've already responded to the fatuous ER argument elsewhere, but if you'd done any research into Japan - where you claim single payer "works" without it being "embarrassing" - you'd know that the way ambulances are provided and hospitals are chosen in an emergency is embarrassing, but then you're clearly "not familiar with the problem".
I'd explain it to you myself but I'm not in a generous mood for some reason (note the allusion to an actual emotion I'm experiencing).
> You can't just deregulate things and hope it'll fix it
I'm not basing my ideas on hope but on reason and consideration.
> You haven't even proposed a solution here, you've just yelled "Free market!" and "Deregulate healthcare!"
The Socratic method would blow your mind. Regardless, I provided some explanation in the form of comparison in another comment.
> But all that will do is worsen the quality that we see
Perhap you could tell us, with regards to LASIK[1]:
a) Has the cost come down since FDA approval?
b) Has the quality gone down?
c) Is the availability greater now than then, and to what extent?
d) Has there been a lesser or greater number of unethical actions in the provision of LASIK than other, more regulated treatments?
e) Has there been a lesser or greater number of bothched treatments in the provision of LASIK than other, more regulated treatments?
You may pick the regulated treatment to compare with.
> Like another poster pointed out, basically any base-line metric puts the U.S. in ranks with most third-world countries. It's embarrassing.
What's embarrassing is not knowing the difference between the mean, mode and median (a look at the average salary of baseball teams is always good for this). This is why any analysis made should be multivariate and not black and white, or you end up with childish conclusions.
For analyses that take into account more than one measure, you get very different outcomes[2]:
> if you remove deaths from fatal injuries from the life expectancy tables? Among the 29 members of the OECD, the U.S. vaults from 19th place to…you guessed it…first. Japan, on the same adjustment, drops from first to ninth.
That's just one, small example. The article contains others and there's more out there. If you're able to respond in the way befitting of the vast majority of HNers then we could discuss those.
Then we can get on to why there are more doctors taking the R.O.A.D. path and why this might do well to be applied to things like surgery, and the actual OECD figures for the UK and US. They'll be highly instructive.
My infusion center is the adult center. I'm not sure I could stomach seeing children and babies getting chemo. I'm crying right now even thinking about it (which hurts, if you remember my side effects).
Powerful ending to the article... indeed, fuck cancer.
I beat the crap out of stage 4 blood cancer a few years ago and am now officially cured. I realized my battle was nothing when I was getting my second round of chemo, and a happy bald 5 year old with a lollipop got on the elevator with me at Seattle Cancer Care Alliance (Fred Hutch) where I was being treated, and I glanced at mom and she looked so very tired.
The incidence rate is like 4.6 out of 100,000 in kids...let's not overstate the situation here, as bad as it feels to see or imagine a child in this situation.
The most frustrating thing to me is that you, the patient, had to ask the doctor who is supposed to help you coordinate your care about one of the most important pieces of the puzzle that was still pending after your procedure.
All of the view alerts, the notifications, reminders, people involved in your care, fancy computer systems, read backs, none of that prevented the potential delay in your treatment. It could have been months before someone noticed and said "hey, we should probably get you into treatment."
Yeah this doesn't give me a lot of confidence in doctors in US. I had friends in ER and the doctor was "trying" different medicines to see what worked. Then wanted to charge $2K for a signature. I don't really know what the people droning about US healthcare being the best in the world are about.
The US is huge so finding something somewhere that is best or top of class is quite easy. That the best treatment might be on the other coast than you and only for the 1% that can both afford it and who happen to know about that specific treatment doesn't seem to count when looking at "Best in the world".
Once you have dealt with a major illness, you realize there is very little 'care' in health care. I sympathize with health care workers(mom is an RN, wife is in school now), but it is an unfortunate situation.
In my experience, outcomes are determined by how much you are willing to manage your own care and, importantly, fight when necessary.
Aside: Two tips we've found in dealing with the US system:
1) Write down everything that happens. Who came in when, what they gave you, how much, what you talked about and when, etc. Our personal experience is that the MDs and nurses take much better care of you when they see that you are taking notes. Not only from a fear of lawsuits aspect (though if that is there, get a new practitioner quickly), but also from a respect angle. That and they do make mistakes, sometimes big ones, and having another record is invaluable when it comes to when a dosage was given. The taking of notes also tends to slow things down, which can be good when trying to understand complex issues or figure things out.
2) If you're in for a while, get a bowl and keep it filled with diverse candies. Practitioners stop by more often, tend to hang around longer, and are generally in a better mood. All of which leads to better outcomes, at least that I have personally seen. Though this is pre-covid advice.
And yes, I very much agree, you have to fight hard to get the care you need. Be polite, of course, but do not back down with MDs, they tend to think of it as a weakness to exploit for some strange reason.
This hits home: "You must become your own health advocate"
To this I will add, if there's an outstanding health issue, even if it seems minor, address it without delay. Pound the phones, demand specialist referrals, and for the love of god don't engage in avoidant behavior or optimism bias.
Timely diagnosis can be a difference between life and death.
I just went through this (with a different cancer). I didn't blog about it like this, but I shared some on Facebook and that seemed to help me and the people around me a lot.
Good luck and thanks for sharing. Keep up the positive attitude, you’ve got a long road ahead of you (wait for quarterly/semiannual/annual exams...) but if you confront it as you do, you’ll be fine.
To all, do frequent check ups (if you can afford it) and don’t dismiss the signs of your body. Oh and one last thing, US medical and insurance systems sucks.
Charlie is the guy who wrote that awesome article about finding a working Apple II in some neighbor's garbage, asking for it and getting it to work. I still have it bookmarked. He inspired me to get a C64 (ok, I'm not a Real Programmer like him, so I got an emulator in a case that looks like a C64).
I wish him the best of luck. I hope he beats this cancer.
Yes, I love the look of that Raspberry and of course I want one. Do I need one? Of course not, but it would make me happy.
After booting up my fake C64 and playing a few games for nostalgia's sake, I'm still struggling to find the time to learn some assembly language for it as I had planned.
Did you ever find the time to do something with your Apple II? If so, you should really write about it. I really, really liked your blog post, I must have read it at least three times!
Not as much time as I'd like. Mostly been playing games so far (I just scored two vintage Apple II joysticks!). But one of my upcoming projects will be experimenting with its serial card. I have a vision of being able to "remote in" to the Apple II from my laptop. Then I'm thinking it will be easier to actually write code for it, since I'll be more easily able to version control it (rather than saving it down to tape or something on the actual machine). Anyway, that's what I'm thinking lately, but we'll see!
Some notes from experience from the other side of a failed chemo:
- Not all ports are metal. Some are plastic.
- Not all chemo drugs have the same side effects; even within drugs, not all implementations have the same ingredients.
- Lots of chemo retrospectives talk about "nausea", but that's imprecise. Nausea and vomiting are separate things, and can be invoked separately. Some chemo drugs act on the vestibular system, which is the part of the nervous system that decides whether the body needs to vomit; some chemo drugs in your blood basically yell "PUKE PUKE PUKE" at your brain, and you vomit without nausea. Other chemo drugs do a number on dopamine or serotonin receptors, giving you intense nausea without the trigger to puke (but you might anyway). You can tell if you're in the latter bucket if chemo makes you absolutely hate chocolate, turkey, or other tryptophan- and tryamine-heavy foods — without the serotonin/dopamine boost in most chocolate, it's just a weird bitter taint that ruins sweet flavors. (Also, some chemo drugs make you REALLY crave fructose. By the bucket. Fruits, fruit-flavored candies, fruit juice, non-stop.)
- If you're young and relatively healthy, there's a decent chance you'll deal with your port closing up, especially if your cycles are 3+ weeks in length. Flushing the port is time-consuming; chemo is already hard to schedule around, but if you have port issues, nothing is ever going to take just 2-4 hours.
- Not sure if Charlie had to deal with pre-meds and post-med flush drips, but we did, and they're mandatory — even if you're unable to finish the infusion.
- Some chemo drugs have a slim chance of causing a severe reaction. If you're going to have one, it'll be within the first 10 minutes of the first infusion. If you have one, it might be a classic sudden allergic reaction, in our case Taxol caused the throat to close up, losing the ability to speak or breathe, treated with a heavy dose of Benadryl. Regardless of the specific reaction, if it's severe then it's a massive problem going forward, because your options are to either ditch the oncologist's first-choice drug or (with a ton of suffering) try to build up a resistance in a hurry. And yeah, if you're unlucky enough to have that reaction, you're very likely going to have that violent reaction in front of an audience of everyone else getting an infusion.
- One of the side-effects of chemo isn't listed here, and might not be a factor in his combo, but in general chemo has an eventual side effect point where it can't continue: the potential to cause nerve damage. This will look or feel a little like Parkinson's, with numb extremities, loss of motor functions, difficulty stringing together words/actions. At the first, slightest sign of this, chemo is over, sometimes for good. If the cancer isn't getting treated by then... good luck.
- Holding off on a cycle due to low white blood cell counts is a foreign concept to me. They ran tests and infusions between cycles to keep WBC counts up, but any cycle delays were considered suicidal. Again, might've been just our treatment course (and severity; we started at stage 4).
- This will vary between infusion centers, but as long as COVID is a problem, you can't rely on having in-person company with you, or contact with other people getting infusions (on account of everyone involved having massive immunity problems from the chemo). If you crave contact, bring a phone, a charger, and the longest possible cable you can get for that charger.
- If you're going to do chemo and nobody recommends a port, ask about them...particularly if you are a tough stick. What used to be 5-15 minutes of agony and stress that would regularly involve bringing in the good hands team with the ultrasound kit turned into basically nothing. Ports can be used for labs as well fwiw.
- If you are a tough stick and don't get a port, don't be afraid to ask for the ultrasound.
- If you're inpatient for some reason and your chemo appointment is getting close, begin asking your doc and the attending about it ahead of time. Some hospitals will do an infusion in your room, some won't...and in those cases you might just miss a dose.
- If you regularly need saline to keep up hydration there are in-home nursing facilities that can do this rather than having to go to the hospital every time. They can teach you to 'de-access' the port as well, so that they don't have to hang around for the hour to get through the bag.
- Emesis bags are available on Amazon by the case.
- If margins are starting to thin, make sure that there is regular bloodwork being done that covers iron, liver function and other diagnostics that are relevant to your situation. Some of these things are slow-movers and can interfere with your treatment plan when they get out of whack. Most of these are available without a referral/prescription from a local hospital or lab.
- If you end up with a hysterectomy or because of your treatment have hot/cold issues in bed, the BedJet is absolutely amazing. https://bedjet.com/
> make sure that there is regular bloodwork being done that covers iron
We've been fighting anemia during treatment, and regular tests have resulted in blood transfusions that kept us on schedule and ultrasound scans to locate and treat the blood loss.
I got to to the point of an antagonistic relationship with our oncology team on this one. I had to constantly fight with them to get regular labs done even after two separate occasions where our treatment was paused because the numbers were out of whack. I started ordering them directly via the home nurses that were doing or saline and sent them with a giant fuck you to the oncology team when they started dipping.
I don't know if your username came from this road you're on but it is absolutely appropriate for it. I wish the best for your and your loved ones.
Another side effect I haven't seen mentioned yet. My mother developed ovarian cancer. It had metastasized before it was detected, so chemotherapy was the only treatment option. During the chemotherapy she suffered nausea and vomiting, which is pretty much expected with chemotherapy. The unexpected part was that she suffered nausea and vomiting after all the rounds of chemo were completed. My mother lost a lot of weight.
My cousin was a registered nurse and she came to help with my mother's care. One night my mother had a crisis, and we took her to the emergency room. Just by chance the admitting physician had been an oncologist, and she said that sometimes chemotherapy damages the lining of the stomach. The doctor admitted my mother and ordered a nuclear medicine scan. The scan showed that the problem wasn't exactly what the doctor thought it might be, but it was very similar, and if could be treated with oral medications. They started her on the medications, and the very next day she ate a full meal without any vomiting.
Unfortunately, when she was transferred from the emergency services department to a regular ward, the changes to her chart didn't make the trip with her. They stopped giving her the new medication and resumed the powerful anti-nausea medicine she had been taking before. With the help of my cousin (the RN) we discovered the mistake a couple of days later, but it was too late. Her body had suffered too much, and she died a few days later.
Very sorry to hear that about your mother. We've been fortunate that the paperwork errors haven't gone worse for us — we've only had to deal with a wrong-bag problem once, and thankfully before they started infusion — but that's a worthy and painful reminder to stay vigilant.
We're two months past the end of chemo and now at the end of a trial that also failed. The vomiting has been worse, if anything, since chemo (and the anti-nausea meds they prescribed) stopped, but it's been due to chronic constipation for us.
Great comments. I experienced neuropathy in hands, feet during chemo, as well as extreme sensitivity to cold. My hands recovered, and the cold sensitivity went away, but my foot neuropathy has persisted for 16 years. Some days it feels bad, other days it's more like a diminishing sensation.
Thank you for this reply. I completely forgot to add the nerve-damage potential to my post and I'm going to amend it to add that, since that is a risk (and one of the other huge reasons that we elected 3 months instead of 6 months).
I pray that you succeed against this battle. I know several people who have successfully battled cancer, one who is doing it at UCSF right now and UCSF is a great hospital for that. You're young and look healthy, I am looking forward to continued decades of your posts!
My ex mother in law was... a professional patient. She was morbidly obese, and over the 20 years I knew her had:
- non-hodgkin's lymphoma
- pulmonary blood clots
- a section of her abdomen the size of a loaf of bread went necrotic after a suture migrated and pierced her intestines.
- heart failure leading to constant oxygen
- breast cancer
and there's probably something else I'm forgetting. She was a deadbeat who managed to work about 6 months of her life. None of her major health problems started until after 40. She was a welfare mom who married a guy with a meth habit who worked at an automotive parts counter making peanuts. At no point was she ever denied care. She even spent around 6 months in the ICU at University of California Irvine and had amazing reconstructive surgery for the necrotic tissue. Of course she ate her way back to morbid obesity after getting a new lease on life.
The US health care system seems to cause more issues for people with a little wealth, because it will happily take it all away. For people with nothing, in my personal experience, you can get great care.
It depends on your situation. If you're low income, depending on your state, you might qualify for Medicaid, which will provide pretty close to the same care as private insurance.
If that's not an option, many hospital provide charity care.
great question. Organizations such as the American Cancer Society will help out occasionally with treatment. If you qualify for medicaid/medicare, you can get some treatments that way. Your doctor could try and get you into trials that are funded and cover the cost of treatment.
At the end of the day though, there are many that fall through the cracks of our healthcare system. And that sucks.
Once you basically lose everything, your house, your 401k, your job, all of your savings, etc, then you declare bankruptcy. After that you’ll qualify for Medicare because your income level. That’s when the federal government steps in and you can usually get some kind of treatment.
OK, so basically once you get reduced to poverty you get some care. Does medicare give you good quality care?
Someone I know recently had cancer in Australia, they are wealthy but don't have private health insurance: so they went through the public system. It seemed like they got care that was just as good to be honest. Just not a private room.
If your income is low enough, you qualify for Medicaid (which is retroactive too so will pay past bills). If you're disabled by the disease and you qualify for Social Security Income you can get covered by Medicare. If neither of those are options, may hospitals provide charity care (where most or all of the bill is forgiven - they often try to get you on Medicaid as well). And if you're truly indigent and on the street, there are hospitals like SF General where you can get care.
I'm not saying that navigating the system is easy or straightforward. But there are options out there.
And bankruptcy laws vary by state, but typically they can't take your home, vehicles or your retirement savings.
I had a brief battle with cancer last year; surgery and radiation therapy for a pT3N0 tumour on my jaw/neck. It wasn’t a walk in the park and there’s some potential long term side effects (osteoradionecrosis and radiation induced fibrosis) but happy to have avoided chemotherapy. Good luck to all living with cancer.
Doctors are still mostly operating under the old wisdom that it is not a problem for those under 60 or so.
I had blood in my stool at 36, and after convincing my doctor that I wanted it checked even if it was 'probably a hemorrhoid', a sigmoidoscopy found 3 polyps. I was lucky that the big one was right at the 'front door' so to speak, otherwise the sigmoidoscopy would have not been deep enough to find them, and I might not be writing this comment today.