5 ms·

I applaud these researchers, but I have to admit this quote made my blood boil: >> "I can only do this because I'm a cancer researcher and clinician and so inh

I applaud these researchers, but I have to admit this quote made my blood boil: >> "I can only do this because I'm a cancer researcher and clinician and so inherently understand the risks," he said. As a cancer survivor, and someone who lost a loved one to glioblastoma, I despise this mindset. The idea that us "common folk" aren't intelligent or educated enough to make the decision to join risky trials is maddening. I fully understand and support this mindset when it's regarding minor diseases. But if someone has 6-9 months to live, and zero chance of survival, I think they have every right to choose to be used as guinea pigs. I know my relative would have LEAPED at this sort of opportunity. She was given 6-10 months, and was dead by 4. At the time, there was an on-going trial she was rejected for, because she had a minor preexisting condition, and thus is it was "too risky." I remember her saying that she would rather die in 2 weeks and help push science forward, then helplessly linger for a couple more months. I am hopeful that the rapid development of the COVID vaccine may have flipped a switch in biotech, and may lead to more risky and experimental trials for truly deadly diseases, such as glioblastoma. If not, I will continue to look to China for hopeful developments. They seem to have more relaxed barriers for trials, and I firmly believe this is one of the reasons their biotech industry is exploding at such a rapid pace.

steveBK123 3y ago
Same elitist attitude I saw on a recent NYT piece about paid full-body MRIs. "People might find stuff that isn't cancerous and freak out". OK well, it might also find early stage cancers that show no symptoms until past the point of no return! MRIs have no side effects aside from the high cost. Even their high cost is reasonably affordable if only done every 5-10 years. As long as doctors & patients make rational follow up decisions with the results, it's a net benefit to be able to get these scans every few years to catch early, slow moving, hard to detect cancers. There are a wide range of cancers there really are no routine screenings for. Yes we screen for what.. breast, colon, prostate, skin.. But what of liver, kidney, thyroid, pancreas, and various others? We had a close friend discover they had stage 2 cancer found during a CT scan after a routine medical procedure went awry. They were told that had the slip-up not occurred, they would have probably lived another 5-10 years, and not fallen ill with any symptoms until stage 4. I don't understand the mindset that we should just pretend the tools aren't available to detect things earlier.
- hgomersall 3y ago
  It's more complicated than that. Misdiagnosis comes with a high cost. What we emphatically do not have is a way to reliably confirm or stage without additional risky interventions, and that's before we even start discussing the mental health implications of misdiagnosis. So as a doctor, it's not about withholding information for the benefit of the patient, it's being aware that for many cancers, in aggregate, they may very well end up doing more harm than good if they screen for it.
  - mathieutd 3y ago
    I don't understand this logic at all. How can more information be bad? If you see a mass that looks very likely to not be cancer, for which the cost of further investigation is higher than the likely benefit, then the rational patient will agree not to investigate further. I don't see how more information can be bad unless you assume that the patient is an idiot or irrational.
    - hgomersall 3y ago
      Because further investigation is dangerous. So you see a mass which has an a posteriori probability of being cancer of 1%, but the investigation causes serious complications in 2% of cases, then the decision to investigate is not clear cut. The additional information has not only not helped but has led to additional stress.
      - steveBK123 3y ago
        Not all further investigation needs to be surgical. A mass that is found can be observed in decreasingly frequent ultrasounds or some other imaging and surgically investigated/removed only if found to be growing or passed a concerning size threshold. A doctor jumping straight to invasive procedures seems to be a mix of poor risk management and rarity of this type of medical imaging. My doctor for example, pointed out that actually in some East Asian countries, there are routine annual imaging tests done that pick up some of the types of cancer we do no screening for. To me the reason we don't in US is simply how medical care is paid for - employer provided insurance, and some actuarial calculation that on the insured pool they'd spend more money on imaging than they'd save on high cost stage 4 cancer care. Personally I'm happy to advocate more for myself, even if it costs money.
jseliger 3y ago
I don't know about the situation in Australia, but in the US the FDA is way too slow and arbitrary, and it's costing lives every year, including, soon, mine: https://jakeseliger.com/2023/07/22/i-am-dying-of-squamous-cell-carcinoma-and-the-treatments-that-might-save-me-are-just-out-of-reach https://jakeseliger.com/2023/07/22/i-am-dying-of-squamous-ce... (HN discussion: https://news.ycombinator.com/item?id=36827438 https://news.ycombinator.com/item?id=36827438). People with what I have—recurrent/metastatic squamous cell carcinomas—are in effect already dead. We should be able to try novel drugs faster, and, if they don't work or have serious side effects, fine, the end result is the same. If they do work, they may prolong everyone else's lives.
- kstrauser 3y ago
  Sorry to hear that, and I agree completely.
- slashdev 3y ago
  Have you tried obtaining the drugs by other means? My mom is taking an experimental drug, not FDA approved, which my dad obtained from India after much research and after consulting with her doctor. Tests have shown she’s a part of percentage of the population that doesn’t metabolize tamoxifen well, so the drug is useless to her. Instead she’s taking endoxifen, which is the main active metabolite of tamoxifen. It’s currently in clinical trials.
- mortureb 3y ago
  As the other commenter mentioned, I knew someone that had fantastic results just getting her “experimental” drugs from India.
  - jassyr 3y ago
    Curious, are these easily found and purchased online? Or does one have to go through some "darkweb" channels?
    - mortureb 3y ago
kstrauser 3y ago
I’m with you. I understand the ethical dilemmas of giving pharma unfettered access to sick people. Still, sick doesn’t automatically mean dumb. My wife reads medical journals and knows how to interpret them. I have much less (yet still more than most) medical experience than her, and I do risk analysis for a living. I think either of us are qualified to look at the statistics and make a rational decision about our own healthcare.
giantg2 3y ago
"I remember her saying that she would rather die in 2 weeks and help push science forward, then helplessly linger for a couple more months." But then the numbers won't look as good for the drug company. But yeah, I agree. I wouldn't be surprised if some people with backgrounds in chemistry and stuff start helping others synthesize some of the drugs by sharing knowledge in the future, renting out equipment, etc. Dallas Buyers Club meets Breaking Bad would be interesting.
DrJaws 3y ago
I think that it's more in the line of - I jumped some walls that others won't be able because I knew the right people as we work together and they dedicated some of their personal time and public funds to help me, but they won't do it for you but without sounding like he used the privileges he really had
lazyasciiart 3y ago
Someone who died of an unrelated condition during the trial doesn’t push the science forward, though. They’re not worried about the risk to the patient when they deny entry to an existing trial: they’re worried about the risk to the data.
mft_ 3y ago
He’s not telling the whole truth. It’s not his being a cancer researcher allowing full understanding of the risks and possible benefits that is important. It’s more that being a well-known and well-connected cancer researcher enables him to quickly access the contacts and have the discussions necessary to access unusual treatments. The shame is that doctors (and hospitals, and nurses…) and the care they offer are like everything in life: on a spectrum of quality. Most people diagnosed with a serious disease (such as cancer) simply don’t have the knowledge, skills, time, and resources necessary to drive themselves further along this spectrum from the median towards excellence. The system is such that to achieve optimal medical outcomes for oneself requires an understanding of the medical system, and an ability to work effectively within (or manipulate) it, to your own benefit. And it’s easy to understand that a well-connected doctor would be able to do that better than most.

steveBK123 3y ago

Same elitist attitude I saw on a recent NYT piece about paid full-body MRIs. "People might find stuff that isn't cancerous and freak out". OK well, it might also find early stage cancers that show no symptoms until past the point of no return! MRIs have no side effects aside from the high cost. Even their high cost is reasonably affordable if only done every 5-10 years. As long as doctors & patients make rational follow up decisions with the results, it's a net benefit to be able to get these scans every few years to catch early, slow moving, hard to detect cancers. There are a wide range of cancers there really are no routine screenings for. Yes we screen for what.. breast, colon, prostate, skin.. But what of liver, kidney, thyroid, pancreas, and various others? We had a close friend discover they had stage 2 cancer found during a CT scan after a routine medical procedure went awry. They were told that had the slip-up not occurred, they would have probably lived another 5-10 years, and not fallen ill with any symptoms until stage 4. I don't understand the mindset that we should just pretend the tools aren't available to detect things earlier.

hgomersall 3y ago
It's more complicated than that. Misdiagnosis comes with a high cost. What we emphatically do not have is a way to reliably confirm or stage without additional risky interventions, and that's before we even start discussing the mental health implications of misdiagnosis. So as a doctor, it's not about withholding information for the benefit of the patient, it's being aware that for many cancers, in aggregate, they may very well end up doing more harm than good if they screen for it.
- mathieutd 3y ago
  I don't understand this logic at all. How can more information be bad? If you see a mass that looks very likely to not be cancer, for which the cost of further investigation is higher than the likely benefit, then the rational patient will agree not to investigate further. I don't see how more information can be bad unless you assume that the patient is an idiot or irrational.
  - hgomersall 3y ago
    Because further investigation is dangerous. So you see a mass which has an a posteriori probability of being cancer of 1%, but the investigation causes serious complications in 2% of cases, then the decision to investigate is not clear cut. The additional information has not only not helped but has led to additional stress.
    - steveBK123 3y ago
      Not all further investigation needs to be surgical. A mass that is found can be observed in decreasingly frequent ultrasounds or some other imaging and surgically investigated/removed only if found to be growing or passed a concerning size threshold. A doctor jumping straight to invasive procedures seems to be a mix of poor risk management and rarity of this type of medical imaging. My doctor for example, pointed out that actually in some East Asian countries, there are routine annual imaging tests done that pick up some of the types of cancer we do no screening for. To me the reason we don't in US is simply how medical care is paid for - employer provided insurance, and some actuarial calculation that on the insured pool they'd spend more money on imaging than they'd save on high cost stage 4 cancer care. Personally I'm happy to advocate more for myself, even if it costs money.

jseliger 3y ago

I don't know about the situation in Australia, but in the US the FDA is way too slow and arbitrary, and it's costing lives every year, including, soon, mine: https://jakeseliger.com/2023/07/22/i-am-dying-of-squamous-cell-carcinoma-and-the-treatments-that-might-save-me-are-just-out-of-reach https://jakeseliger.com/2023/07/22/i-am-dying-of-squamous-ce... (HN discussion: https://news.ycombinator.com/item?id=36827438 https://news.ycombinator.com/item?id=36827438). People with what I have—recurrent/metastatic squamous cell carcinomas—are in effect already dead. We should be able to try novel drugs faster, and, if they don't work or have serious side effects, fine, the end result is the same. If they do work, they may prolong everyone else's lives.

kstrauser 3y ago
Sorry to hear that, and I agree completely.
slashdev 3y ago
Have you tried obtaining the drugs by other means? My mom is taking an experimental drug, not FDA approved, which my dad obtained from India after much research and after consulting with her doctor. Tests have shown she’s a part of percentage of the population that doesn’t metabolize tamoxifen well, so the drug is useless to her. Instead she’s taking endoxifen, which is the main active metabolite of tamoxifen. It’s currently in clinical trials.
mortureb 3y ago
As the other commenter mentioned, I knew someone that had fantastic results just getting her “experimental” drugs from India.
- jassyr 3y ago
  Curious, are these easily found and purchased online? Or does one have to go through some "darkweb" channels?
  - mortureb 3y ago

kstrauser 3y ago

I’m with you. I understand the ethical dilemmas of giving pharma unfettered access to sick people. Still, sick doesn’t automatically mean dumb. My wife reads medical journals and knows how to interpret them. I have much less (yet still more than most) medical experience than her, and I do risk analysis for a living. I think either of us are qualified to look at the statistics and make a rational decision about our own healthcare.

giantg2 3y ago

"I remember her saying that she would rather die in 2 weeks and help push science forward, then helplessly linger for a couple more months." But then the numbers won't look as good for the drug company. But yeah, I agree. I wouldn't be surprised if some people with backgrounds in chemistry and stuff start helping others synthesize some of the drugs by sharing knowledge in the future, renting out equipment, etc. Dallas Buyers Club meets Breaking Bad would be interesting.

DrJaws 3y ago

I think that it's more in the line of - I jumped some walls that others won't be able because I knew the right people as we work together and they dedicated some of their personal time and public funds to help me, but they won't do it for you but without sounding like he used the privileges he really had

lazyasciiart 3y ago

Someone who died of an unrelated condition during the trial doesn’t push the science forward, though. They’re not worried about the risk to the patient when they deny entry to an existing trial: they’re worried about the risk to the data.

mft_ 3y ago

He’s not telling the whole truth. It’s not his being a cancer researcher allowing full understanding of the risks and possible benefits that is important. It’s more that being a well-known and well-connected cancer researcher enables him to quickly access the contacts and have the discussions necessary to access unusual treatments. The shame is that doctors (and hospitals, and nurses…) and the care they offer are like everything in life: on a spectrum of quality. Most people diagnosed with a serious disease (such as cancer) simply don’t have the knowledge, skills, time, and resources necessary to drive themselves further along this spectrum from the median towards excellence. The system is such that to achieve optimal medical outcomes for oneself requires an understanding of the medical system, and an ability to work effectively within (or manipulate) it, to your own benefit. And it’s easy to understand that a well-connected doctor would be able to do that better than most.