We’re a Lot Better at Fighting Cancer Than We Realized • Hacker News Board

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

#101

Post by e40 » Sat, Aug 01, 2020, 8:38 PM UTC

softwaredoug wrote: post #39

trynewideas wrote: post #5

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…

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?

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

#102

Post by msie » Sat, Aug 01, 2020, 8:38 PM UTC

trynewideas wrote: post #76

cmrdporcupine wrote: post #7

Earlier quoted context omitted.

I feel for you. Having lost two friends in their 30s and 40s to breast cancer in the last decade, I have to say that the system seems incredibly incapable of dealing well with the aggressive cancers that younger people (mostly women) get. There's a lot of bias during critical diagnosis stage that causes these cancers to often ignored until too late because the patient is young and "healthy" (not obese, or whatever) a…

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 that grew BETWEEN her stomach and the abdominal wall. They were invisible in x-rays and ultrasounds. They are easily removed through laparoscopic surgery. A couple of times, I suggested that her splenectomy may have caused some internal scarring that was irritated by her stomach but they didn't listen to me. I feel bad about not pursuing that theory. They did find adhesions in her abdomen during emergency surgery for a perforated colon but she died the morning after.

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

#103

Post by trynewideas » Sat, Aug 01, 2020, 8:43 PM UTC

twunde wrote: post #82

trynewideas wrote: post #5

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…

About the 40k bills, I would suggest not paying them immediately and talking to your insurance company regularly (yes, it's exhausting and a PITA). Because of their slower systems, they're probably doing billing calculations on a monthly cycle so if you got multiple bills within a time period, their systems haven't realized that you've hit your out of pocket max (in engineering terms you've got multiple concurrent pr…

Yeah, we're pushing back on it, and I'm dead lucky to not only have an employer, but one that's provided some legal assistance so far.

If anyone wants to turn this thread back around to "what can tech companies do", it's extending legal and financial services to employees who have their backs to the wall in situations like this.

I liked my manager before this, a lot, but I'd take a barrage of bullets for her now.

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

#104

Post by rpmisms » Sat, Aug 01, 2020, 8:45 PM UTC

bserge wrote: post #67

trynewideas wrote: post #5

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…

> a cancer that had been misdiagnosed as an infection, an iron deficiency, and a benign tumor for four months prior It's absolutely maddening that this is not even uncommon. Doctors think they know best, definitely better than you , and will stand by their sometimes quite obviously idiotic conclusions, leaving you helpless. And in some countries with universal healthcare, it's a lot harder to just go find a better do…

Yeah, the American free market system is expensive, but man, ~98% survival rate for breast cancer? That's extremely impressive.

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

#105

Post by racecar789 » Sat, Aug 01, 2020, 8:45 PM UTC

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.

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

#106

Post by grecy » Sat, Aug 01, 2020, 8:47 PM UTC

trynewideas wrote: post #5

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…

I'm sorry you're going through this, but please don't confuse the terrible healthcare system of your country with the fight against cancer in general.

A few years ago my Mum was diagnosed with Stage 4 lung cancer (certain death). She had many rounds of radiation and chemo, and after initially being given 6 months to live, she was put on cutting edge trial drugs and given treatments that where unheard of just a few years ago.

For almost 2 years she did really well, living a very high quality of life while the doctors got very close to nailing the cancer. It was of a type that their drugs couldn't quite attack fully, so it eventually won and we lost my Mum 2.5 years after being diagnosed.

After all that treatment and care and hospital stays and cat scans and x-rays the total amount my family paid was $0 and zero cents.

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

#107

Post by rpmisms » Sat, Aug 01, 2020, 8:47 PM UTC

Jabbles wrote: post #84

seebetter wrote: post #83

Earlier quoted context omitted.

I asked my oncologists and urologists the same question, and they all gave me the same scripted answer. No one knew if vitamins could help my cancer. No one knew if I could affect my IGF1 levels by diet ("I don't know but I doubt that."). After this, I worked closely with several surgeons and realized how non-curious most doctors/surgeons are. We create systems and then train individuals to operate within those syste…

It's probably because there is no known or proposed potential mechanism for how "vitamins could help [your] cancer". I bet most doctors try to keep up to date on scientific studies that show promise. Rather than say "no", they say "there's no evidence". Probably because of the litigious nature of the job. What do you expect them to do, if there isn't any evidence?

What's worse, asking about things like vitamins to help cancer treatment gets you labeled as a kook. Wouldn't improving your general health help your body fight cancer?

That would seem to be a reasonable assumption, but you must not like vaccines if you think that way, Karen.

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

#108

Post by arcticbull » Sat, Aug 01, 2020, 8:56 PM UTC

libraryatnight wrote: post #92

arcticbull wrote: post #41

Earlier quoted context omitted.

"...doctor because of course they know best" is a really strange thing to say. I don't mean to invoke paternalism here -- but between a patient with Google and a doctor with years of medical training, residency and practice, they more than likely do know best. At least, better than the patient. They won't always be right, and you can ask for a second opinion, but they do know better. If they didn't, you could practic…

In some ways I do practice my own medicine and doctors are just QA. I know when I need antibiotics, or I have a strong hunch, I just need them to confirm and write the script (They do this over apps now). My GP wasn't much help with a problem I was having, so I had to track down a specialist who would listen, eventually I was found to be RIGHT, and again just needed the doctor to write the script. Not saying they don…

> I know when I need antibiotics, or I have a strong hunch, I just need them to confirm and write the script (They do this over apps now).

Frequently people do not know when or if they need antibiotics. People often end up taking antibiotics for viral infections (which do nothing). The CDC points out that taking antibiotics for viral infections can do more harm than good [1] and this leads to antibiotic resistance [2]. It's pretty unlikely a doctor would prescribe you antibiotics for a viral infection, certainly at the population level. This is why they're in the loop.

There's a lot that goes into prescribing antibiotics. For instance, do you have a bacterial, viral, or amoebal infection? Is it gram-positive or gram-negative? Broad-spectrum antibiotic or targeted? Is it worth the potential risks to your gut health? [3] How about side-effects and contra-indications? What if you have something else entirely?

[1] https://www.medicalnewstoday.com/articles/237975

[2] https://www.hopkinsmedicine.org/health/wellness-and-preventi...

[3] https://www.sciencedaily.com/releases/2018/10/181023110545.h...

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

#109

Post by ChefboyOG » Sat, Aug 01, 2020, 9:01 PM UTC

trynewideas wrote: post #5

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…

I agree with everything you've said and have a lot of opinions on this topic, but I just wanted to comment and say how sorry I am for what you and your partner are going through.

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

#110

Post by Gibbon1 » Sat, Aug 01, 2020, 9:03 PM UTC

agumonkey wrote: post #14

trynewideas wrote: post #5

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…

When my uncle got cancer I thought, even with the near zero chances, at least we'd get to see a clean battle. But lots of things were disorganized and weak. I also kinda caught a high ranked guy hiding the truth partially (claims no difference between hospitals at first, then boasts about his facility .. mentioning all the benefits of being here in passing, I ask again for transfer he started stuttering saying no dif…

Thing Ive become aware of is a fraction of doctors and hospitals game the metrics by cherry picking patients. Not just with cancer either. That sets up the possibility the the good program actually has worse outcomes. In short that guys facility has better metrics because they avoid patients like your uncle.