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We’re a Lot Better at Fighting Cancer Than We Realized

cshl.nautil.us

111–120 of 142 posts

Re: We’re a Lot Better at Fighting Cancer Than We Realized

#111
post #102

Earlier quoted context omitted.

Yeah, it's been our experience that getting any doctor to take breast and uterus conditions seriously, especially with symptoms that can't be empirically measured, is a nightmare. My partner spent most of their months living with this tumor feeling like they were being stabbed to death every 20 to 30 minutes, between the torsioning and it getting pinned against their uterine walls. It should not have taken a third op…

My sympathies for you. I've had bad diagnostic experiences with my mother where I thought: "do I have to be the expert here?" My mom had this crippling abdominal itchiness that all the doctors thought was due to her Parkinson's. They did do x-rays, ultrasounds, an endoscopy, a colonoscopy and prescribed cream for her skin but none of that found anything or helped. What they didn't consider were abdominal adhesions th…

I'm so sorry for your loss and for this comment if it turns out to be unwanted.

We can always do more. Don't let that overshadow what you did do. You showed yourself to be a loving and caring daughter/son. Please don't feel bad because you weren't listened to. You already exceeded what was expected of you and I think any parent would be proud.

Re: We’re a Lot Better at Fighting Cancer Than We Realized

#112

From a science and pharmaceutical perspective, maybe. As the partner of someone in the US dealing with stage 4 cancer in their 40s, who has two hospitals fighting with each other over whether to keep using a chemo drug that's sent them into anaphylactic shock twice in two rounds of chemo because it's _more convenient_ for the infusion clinic to administer, and all of that currently held up by pre-approval from a rela…

> From a cancer that had been misdiagnosed as an infection, an iron deficiency, and a benign tumor for four months prior

Someone close to the family had cancer, got it removed and treated. A year or two later they complained about pain the back, also it was getting harder to breathe.

He got multiple checkups and got sent to a physio to help him with the back pain, and some asthma medication for his breathing. Went on for half a year with little improvement.

Then, entirely unrelated, he had to take an x-ray of his shoulder. The x-ray tech noticed something and flagged it immediately. Off to take more scans. Turns out he had tumors in his spine and lots of small ones in his lungs...

The thing that blew me away was this: when he got informed that the tumor had spread, they said "the original tumor you had predominantly spreads to the lungs and skeleton"... Of course he had not been told this before, and sadly he had not inquired about it either.

I'm still at a loss of words for how they thought asthma medication and some back massages would help.

I learned then, and tell everyone I can, that if you get cancer and survive the initial one, you _have_ to ask about where it might spread to. Then be very observant of any changes in those areas.

Re: We’re a Lot Better at Fighting Cancer Than We Realized

#113

From a science and pharmaceutical perspective, maybe. As the partner of someone in the US dealing with stage 4 cancer in their 40s, who has two hospitals fighting with each other over whether to keep using a chemo drug that's sent them into anaphylactic shock twice in two rounds of chemo because it's _more convenient_ for the infusion clinic to administer, and all of that currently held up by pre-approval from a rela…

the state of healthcare in US is absolutely horrifyng How is that even possible that there's a place on earth where middle level engineers are paid 6 figures salaries but as a society they don't care if someone dies in a hospital bed over insurance legalities is completely maddening to me it's one of those things that I will never understand and accept as normal

That’s a really harsh and unfair statement. The doctors and nurses care tremendously and want to help everyone, hospitals do their best to cure everyone. Yes, insurance sucks, but that doesn’t diminish the quality of the workers and how they’re trying to help you.

Re: We’re a Lot Better at Fighting Cancer Than We Realized

#114

Earlier quoted context omitted.

The last bit of your comment, regarding misdiagnosis, reminds me of a recent episode of Peter Attia’s podcast The Drive, wherein he interviews an experienced oncologist. Her opinion was strong in that we are overspending in treatment research and underspending in (early) diagnosis research. Her case, as described in the interview, made sense to me and gave me some hope that at least others could benefit in the future…

The incentive for all parties (except the patients) is to increase revenue, rather than decrease costs. Insurance companies may want to reduce costs on a case by case basis, but on a macro level they want to spend more, since they are required to spend 80% of premiums received on treatment. More treatment means higher premiums, which means the 20% not spent on treatment is higher. Hospitals have similar incentives, s…

If they diagnose more illnesses, wouldn't that also lead to more spent on treatments and higher reimbursements?

Or do you mean if it's "caught early" the treatments might be cheaper and so less overall reimbursements?

For the latter case, moving to a capitation model can't come soon enough:

https://en.wikipedia.org/wiki/Capitation_(healthcare)

Re: We’re a Lot Better at Fighting Cancer Than We Realized

#115

Earlier quoted context omitted.

The doctor certainly knows better than the patient, all else being equal. However, the patient has much more time, motivation, and contextual information about their situation. This leads to situations (some of the time) where a patient who has done a lot of research can outperform a doctor who spent 10 minutes doing an exam and making an educated guess based on demographic factors.

I would love to see a study to back that up. I just don't think that in aggregate at the population level misdiagnoses would go down if people did it themselves. This study of online tools wasn't glowing [1]. "In comparison, other studies have found that Internet search engines for urgent symptoms led to content that suggested emergency medical treatment only 64 percent of the time." [1] It also found tooling less ef…

Certainly not at the aggregate level. But if you have a chronic condition, and your doctor's advice isn't working, I think it's reasonable to do your own research even though in general the doctor knows best.

Re: We’re a Lot Better at Fighting Cancer Than We Realized

#116

Earlier quoted context omitted.

He said some

Which? Because without specifics it's just casting aspersions on the whole concept of universal healthcare. Especially since a major part of OP's point was about costs and insurers.

I feel you. I hate seeing the talking point about seeing other doctors being ‘harder’ in countries with socialized medicine. Most of the debate in the US is centered around how one single system works: Canada. Canada’s system is pretty restrictive compared to pretty much every other European or Latin American country with socialized health care, and conservatives in America have latched to a few shortcomings of that system to paint every other system as worse than the US, when in reality the vast majority of Canadians themselves would favor their systems to the US.

It’s almost impossible to have a real conversation about socialized medicine here without encountering a myriad talking points like that one.

Re: We’re a Lot Better at Fighting Cancer Than We Realized

#117

Earlier quoted context omitted.

I would love to see a study to back that up. I just don't think that in aggregate at the population level misdiagnoses would go down if people did it themselves. This study of online tools wasn't glowing [1]. "In comparison, other studies have found that Internet search engines for urgent symptoms led to content that suggested emergency medical treatment only 64 percent of the time." [1] It also found tooling less ef…

Certainly not at the aggregate level. But if you have a chronic condition, and your doctor's advice isn't working, I think it's reasonable to do your own research even though in general the doctor knows best.

Totally agree.

Re: We’re a Lot Better at Fighting Cancer Than We Realized

#118

There is a firewall that exists between doctors and billing. Or maybe it's blissful ignorance. I have noticed doctors often have no idea what their tests and procedures will cost the patient. Moreover, a doctor's vocal tone often changes when discussing cost. The tone changes from friendly/caring to annoyed/defensive. I don't think the firewall can last forever.

> I have noticed doctors often have no idea what their tests and procedures will cost the patient.

Maybe they don't know the amounts, but they are forced to know a lot about how the billing process works. For example, my company develops a product that helps doctors create documentation in a way that makes it more likely they will get reimbursed by insurance companies with the least amount of hassle and push back.

Also, they probably have no idea what it will cost you until the insurance company and hospital fight it out over the price.

> The tone changes from friendly/caring to annoyed/defensive.

Every doctor is triggered by having to deal with bureaucratic insurance and billing processes that consume their time and keep them from spending more time on treating patients. You are sensing their barely controlled rage at the system.

(This is all for the US system, probably not true in most other countries.)

Re: We’re a Lot Better at Fighting Cancer Than We Realized

#119
I'm sorry but re-purposing existing drugs does not sound promising at all.

Having computers that can fold the proteins and understand how molecules bind sounds like a much better shot. Figuring out how to do this with quantum computers to really really speed it up would be wonderful.

Re: We’re a Lot Better at Fighting Cancer Than We Realized

#120
post #101

Earlier quoted context omitted.

My mom was just told she has likely incurable pancreatic cancer, so I’m right there with you. It’s frustrating because my sense is either due to doctors desensitization, or due to economics of cancer treatment, my mom feels like a commodity to them. Not a focus. As my mom said “this probably happened because they didn’t do chemo for 4 months before surgery”. I get a sense of “shrug” or business as usual from the docs…

My best friend just got a diagnosis of stage 4 pancreatic cancer. I've worked with 2 people and have known an additional 4-5 people that have died from this cancer. All my charitable donations will now be going to pancreatic cancer research, if I can find what looks like a good organization. I find it so hard to decide. Anyone have ideas?

Pancreatic cancer is a really, really hard cancer to treat due to the way it tends to wall itself off from the rest of the body. It is near impossible to get any drug to the cancer.
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