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My father died of pancreatic cancer this week after getting a diagnosis 36 days prior. Since then I've been on a minor crusade to find methods of making sure I

My father died of pancreatic cancer this week after getting a diagnosis 36 days prior. Since then I've been on a minor crusade to find methods of making sure I have a better diagnosis of anything similar. Full body MRI can be had for ~$2k. I can imagine going in and getting a genome sequencing and an MRI scan done, and then over the years having a much better idea of the changes going on in your body as you age, along with an evolving map of what to look out for. It's exiting, and yet I'm worried about handing over information that could be used against me by corporations, the government or insurance companies.

pavlov 4y ago
Maybe get your MRI and genome done in Europe which has very strong protections for this kind of data?
- bobf 4y ago
  Medical tourism and paying in cash wherever is convenient/inexpensive might also be an option to consider - there are a lot of places that will be cheaper than Europe.
divbzero 4y ago
I am very sorry for your loss. I know there are efforts like Galleri [1] to detect cancer early using liquid biopsy [2] but I don’t know how effective they are at the moment. [1]: https://www.galleri.com/ https://www.galleri.com/ [2]: https://en.wikipedia.org/wiki/Liquid_biopsy https://en.wikipedia.org/wiki/Liquid_biopsy
zemvpferreira 4y ago
My condolences for your loss. My own father is a physican and very against any elective exams himself. His reasoning is that his colleagues are excessively interventive so the less medicine, the better. I wish your own father had been diagnosed in time but I can see the downside in doing too many exams as well. Doctors won't be able to keep their hands off treating any little lump they find, even if it's to your detriment. Case in point, surgery for back pain causes said pains to worsen at about the same rate as it improves them.
- hawk_ 4y ago
  What you do when you find something out is still a choice. If that backpain isn't getting in the way of most of your lifestyle then the risks of a surgery aren't justified. A lump in the pancreas well I think most of us would be better served by finding that out earlier than later.
- _tom_ 4y ago
  While I totally understand his point about excessive intervention, ignorance is not the answer. You absolutely can say "no" to doctors. Of course, with tests that are of themselves dangerous, that's another issue. Skip those if the risk/reward is too high. Getting diagnosed too late is much worse than having to say no.
  - yellow_postit 4y ago
    The concept of being a “previvor” I first came across in The Gene is worrying to me as well — finding you have a correlated but not actionable association with a disease or other poor medical outcome. I think the “just say no” underplays the challenges that can come from unactionable information.
    - _tom_ 4y ago
      Both are valid concerns. But I feel that "dying of something that could have been treated, if found earlier" trumps both.
- novok 4y ago
  That partly comes from the liability / malpractice system of the USA. They are induced to jump on everything so they don't get sued by malpractice lawsuits. The amount of detrimental behavior in medical system driven by this stuff is extremely saddening and if you know doctors, how much they think / worry about this stuff is so fucking annoying and sad.
- godmode2019 4y ago
  I agree, often having more information is worse because you notice things and over react to things that would otherwise go unnoticed and fix them self. I noticed this first when tracking sleep data, but it can also be applied to many other areas were humans try fix small problems but tend to make things worse.
etrautmann 4y ago
My wife is a physician and this is a contentious issue. Virtually any full scan will turn up things that seem like a cause for concern when you're fine. The risk of false positives is fairly high when testing is nonspecific/un-targeted. This results in real stress, difficult decisions, and often times worse care.
- m463 4y ago
  I was wondering when I would see this answer, since that's what they would always say on House. I still think there are probably big obvious things that need to be caught early.
  - jghn 4y ago
    It's tricky. At a population scale it looks more and more like early detection for many things causes more harm than good. On the other hand, if you're the person who could have had a better outcome with early detection it's hard to argue that point.
  - bsder 4y ago
    If you are hunting for a gross change, sure, go get scanned. For example, a calcium scan is generally a good thing--learning that your arteries are 50%+ blocked will save your life. However, the kind of detail you require to catch something small, early requires an MRI--generally with a contrast dye. Unfortunately, Gadolinium, for example, seems to bioaccumulate. So, just like X-Rays, how many MRI's do you need to get over your life before the MRI is more problematic than the thing you are looking for? And this is before you start getting into what emotional toll that "spotting something" will have on the patient. A friend of mine had "something" on her mammogram and the anxiety combined with high-blood pressure spike that induced until the biopsy came back negative could very well have given her a stroke. The worst part is that people want to do all this "medical" stuff when there are much better low-hanging fruits: eat better, exercise, sleep, get vaccinated (viruses cause more damage than you think), etc.
- deleted 4y ago
  [deleted]
dominotw 4y ago
i am sorry for your loss. That must be such a shock to everyone in your family. We are getting HRR genome testing done for my father this week for his prostate cancer. Some of the PARP inhibitors seem to have decent success in prostate cancer.
FollowingTheDao 4y ago
Sorry man, my father died of pancreatic cancer as well. I have found two homozygous SNPs in my ABO gene (rs505922, rs657152) that are linked to Pancreatic Cancer. ABO needs manganese as a cofactor so I eat a lot of mussels. They gave my father one year if he went on Chemo and the chemo killed him in there weeks. Check out these links about the ABO gene and Manganese in pancreatic cancer. https://pubmed.ncbi.nlm.nih.gov/12649190/ https://pubmed.ncbi.nlm.nih.gov/12649190/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2657095/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2657095/ https://pubmed.ncbi.nlm.nih.gov/12700280/ https://pubmed.ncbi.nlm.nih.gov/12700280/ I suffer from a lot of genetic stuff that I have fixed understanding my genetics. That is more valuable than any harm that could be done with my genetics.
walnutclosefarm 4y ago
My condolences. My wife has lost both her mother and brother in similar "bolt from the blue" fashion. It's hard. But, before you conclude that you want to try whole body MRI as your response, I recommend you read this: https://cancerimagingjournal.biomedcentral.com/articles/10.1186/s40644-020-00315-0 https://cancerimagingjournal.biomedcentral.com/articles/10.1.... It's heavy going if your're not au fait with statistics, but important. The potential for more harm than good is quite real.
pedalpete 4y ago
Sorry to hear about your father. That is difficult, particularly on such a short timeline. Though many of the other comments here are focused on the negative consequences of doing full body scans, I believe they are thinking about full body MRI and other tests using only today's technology. They are correct, we can't or maybe I should say probably shouldn't give a doctor a full MRI and say "what do you see that might need to be addressed", however, we should be able to train an AI to say "look at this scan, is there anything that you would recommend the doctor take a closer look at". This should probably be done in conjunction with blood work, and maybe even genetic testing, etc. A doctor looking for something wrong has a TON of things to look at, and interactions between them, what other patients have had issues recently that might lead them in one direction or another due to their experience. An AI can likely be trained to take a less biased, or perhaps more appropriately biased look at significantly more data than a person, and make recommendations to the expert doctor of what the AI suggests would be beneficial to look at.
jjtheblunt 4y ago
Oh wow, terribly sad.
snovv_crash 4y ago
Also had the death of a relative from pancreatic cancer, 10 days between diagnosis and death. Apparently it is extremely aggressive, and unless you are extremely lucky with the timing, catching it 'early' just isn't going to help unless you're scanning yourself twice a month.

pavlov 4y ago

Maybe get your MRI and genome done in Europe which has very strong protections for this kind of data?

bobf 4y ago
Medical tourism and paying in cash wherever is convenient/inexpensive might also be an option to consider - there are a lot of places that will be cheaper than Europe.

divbzero 4y ago

I am very sorry for your loss. I know there are efforts like Galleri [1] to detect cancer early using liquid biopsy [2] but I don’t know how effective they are at the moment. [1]: https://www.galleri.com/ https://www.galleri.com/ [2]: https://en.wikipedia.org/wiki/Liquid_biopsy https://en.wikipedia.org/wiki/Liquid_biopsy

zemvpferreira 4y ago

My condolences for your loss. My own father is a physican and very against any elective exams himself. His reasoning is that his colleagues are excessively interventive so the less medicine, the better. I wish your own father had been diagnosed in time but I can see the downside in doing too many exams as well. Doctors won't be able to keep their hands off treating any little lump they find, even if it's to your detriment. Case in point, surgery for back pain causes said pains to worsen at about the same rate as it improves them.

hawk_ 4y ago
What you do when you find something out is still a choice. If that backpain isn't getting in the way of most of your lifestyle then the risks of a surgery aren't justified. A lump in the pancreas well I think most of us would be better served by finding that out earlier than later.
_tom_ 4y ago
While I totally understand his point about excessive intervention, ignorance is not the answer. You absolutely can say "no" to doctors. Of course, with tests that are of themselves dangerous, that's another issue. Skip those if the risk/reward is too high. Getting diagnosed too late is much worse than having to say no.
- yellow_postit 4y ago
  The concept of being a “previvor” I first came across in The Gene is worrying to me as well — finding you have a correlated but not actionable association with a disease or other poor medical outcome. I think the “just say no” underplays the challenges that can come from unactionable information.
  - _tom_ 4y ago
    Both are valid concerns. But I feel that "dying of something that could have been treated, if found earlier" trumps both.
novok 4y ago
That partly comes from the liability / malpractice system of the USA. They are induced to jump on everything so they don't get sued by malpractice lawsuits. The amount of detrimental behavior in medical system driven by this stuff is extremely saddening and if you know doctors, how much they think / worry about this stuff is so fucking annoying and sad.
godmode2019 4y ago
I agree, often having more information is worse because you notice things and over react to things that would otherwise go unnoticed and fix them self. I noticed this first when tracking sleep data, but it can also be applied to many other areas were humans try fix small problems but tend to make things worse.

etrautmann 4y ago

My wife is a physician and this is a contentious issue. Virtually any full scan will turn up things that seem like a cause for concern when you're fine. The risk of false positives is fairly high when testing is nonspecific/un-targeted. This results in real stress, difficult decisions, and often times worse care.

m463 4y ago
I was wondering when I would see this answer, since that's what they would always say on House. I still think there are probably big obvious things that need to be caught early.
- jghn 4y ago
  It's tricky. At a population scale it looks more and more like early detection for many things causes more harm than good. On the other hand, if you're the person who could have had a better outcome with early detection it's hard to argue that point.
- bsder 4y ago
  If you are hunting for a gross change, sure, go get scanned. For example, a calcium scan is generally a good thing--learning that your arteries are 50%+ blocked will save your life. However, the kind of detail you require to catch something small, early requires an MRI--generally with a contrast dye. Unfortunately, Gadolinium, for example, seems to bioaccumulate. So, just like X-Rays, how many MRI's do you need to get over your life before the MRI is more problematic than the thing you are looking for? And this is before you start getting into what emotional toll that "spotting something" will have on the patient. A friend of mine had "something" on her mammogram and the anxiety combined with high-blood pressure spike that induced until the biopsy came back negative could very well have given her a stroke. The worst part is that people want to do all this "medical" stuff when there are much better low-hanging fruits: eat better, exercise, sleep, get vaccinated (viruses cause more damage than you think), etc.
deleted 4y ago
[deleted]

dominotw 4y ago

i am sorry for your loss. That must be such a shock to everyone in your family. We are getting HRR genome testing done for my father this week for his prostate cancer. Some of the PARP inhibitors seem to have decent success in prostate cancer.

FollowingTheDao 4y ago

Sorry man, my father died of pancreatic cancer as well. I have found two homozygous SNPs in my ABO gene (rs505922, rs657152) that are linked to Pancreatic Cancer. ABO needs manganese as a cofactor so I eat a lot of mussels. They gave my father one year if he went on Chemo and the chemo killed him in there weeks. Check out these links about the ABO gene and Manganese in pancreatic cancer. https://pubmed.ncbi.nlm.nih.gov/12649190/ https://pubmed.ncbi.nlm.nih.gov/12649190/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2657095/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2657095/ https://pubmed.ncbi.nlm.nih.gov/12700280/ https://pubmed.ncbi.nlm.nih.gov/12700280/ I suffer from a lot of genetic stuff that I have fixed understanding my genetics. That is more valuable than any harm that could be done with my genetics.

walnutclosefarm 4y ago

My condolences. My wife has lost both her mother and brother in similar "bolt from the blue" fashion. It's hard. But, before you conclude that you want to try whole body MRI as your response, I recommend you read this: https://cancerimagingjournal.biomedcentral.com/articles/10.1186/s40644-020-00315-0 https://cancerimagingjournal.biomedcentral.com/articles/10.1.... It's heavy going if your're not au fait with statistics, but important. The potential for more harm than good is quite real.

pedalpete 4y ago

Sorry to hear about your father. That is difficult, particularly on such a short timeline. Though many of the other comments here are focused on the negative consequences of doing full body scans, I believe they are thinking about full body MRI and other tests using only today's technology. They are correct, we can't or maybe I should say probably shouldn't give a doctor a full MRI and say "what do you see that might need to be addressed", however, we should be able to train an AI to say "look at this scan, is there anything that you would recommend the doctor take a closer look at". This should probably be done in conjunction with blood work, and maybe even genetic testing, etc. A doctor looking for something wrong has a TON of things to look at, and interactions between them, what other patients have had issues recently that might lead them in one direction or another due to their experience. An AI can likely be trained to take a less biased, or perhaps more appropriately biased look at significantly more data than a person, and make recommendations to the expert doctor of what the AI suggests would be beneficial to look at.

jjtheblunt 4y ago

Oh wow, terribly sad.

snovv_crash 4y ago

Also had the death of a relative from pancreatic cancer, 10 days between diagnosis and death. Apparently it is extremely aggressive, and unless you are extremely lucky with the timing, catching it 'early' just isn't going to help unless you're scanning yourself twice a month.