Yep, if we really want to cure cancer, we need to go back into the tissue archives and study every single cancer that's ever been diagnosed, at the molecular level, to start getting our heads around what really happened to all those people. 10 million people a year. Every year. For a the last 6-7 decades of chemotherapy.
Meanwhile, there's this perverse medicolegal incentive to retain the excised tissue samples for the minimum necessary period of time, which is 10 years for US laboratories accredited by the College of American Pathologists.
You heard it right, the lawyers won. We spend medical administration time filling out medical administrative paperwork to spend medical care dollars burning most of the cure to cancer. Every year.
What would be the value in finding a cure for cancer for a patient who is already dead if that patients particular mutation is unlikely to be found in another person?
As has already been stated you can use the prior tissue to better individualize current treatment. For example I'm a really rare patient, most people in my situation are already dead by this point in their treatment. Chemotherapy worked so well most of my primary tumor was gone within days and they haven't seen it since my 6th treatment. They still think it's there but it's generally too small to be seen. They didn't save the samples from my cancer to figure out why it worked so welln or why I've been able to handle aggressive treatment for far longer than average with minimal side effects. No hair loss, minimal nerve damage, etc. If that information could help even one other person, I would want it out there. I've contributed to every study I can be a part of and consented to every bit of sharing of my generic material I could, I only wish I could do more. Nearly everyone with my same diagnosis at the same time as me is dead. Speaking just for myself, being able to contribute to keeping other people from ever going through this means the world to me.
I'm stage 4 Stomach cancer, started there because it's super aggressive, the OS for 5 years at stage 4 is 5% at last reading, based on my current treatment outcomes I've got at least another year in me based on available treatments as I'm still first line and the cancer is still responding to chemo. I'm aiming for 10 years, because go big or go home right? It was all through my periodontal cavity, but apparently aside from the primary tumor my cancer cells are too small to be seen on imaging, PET or CT. I'm apparently supposed to be dead already, and yet here I am kicking around. I get "you don't look like you have cancer" a lot, because I'm on the bigger side. It was the best damned weight loss program I was ever on though, lost 60lbs before my first chemo. It took me a while to realize just how stupendously lucky I was. Every single day I wake up terrified that it could be my last and every single night I go to bed terrified I might die in my sleep. Every treatment has a risk of death, or get this, causing new cancers. I'm heading into my 16th treatment of 5FU and just recently dropped the Oxaliplatin, which causes permanent nerve damage in most people, but it's way better than death, which it can also cause if you have a bad reaction. I've been planning out a Youtube channel for younger people like me who get cancer, and I suppose older people would appreciate it too. I've missed very few days of work over this whole thing and it's been mostly an inconvenience. I've got mostly good days, been way more chipper since getting diagnosed oddly enough, I have some bad days, and nights I straight up cry in the shower so my wife doesn't see. I think the best thing about getting cancer is that I have an excuse to make people in a cancer ward laugh with my dark humor and no one will say anything because we all need to laugh, it's the only time that constant nagging in your head about how close you are to death seems to go away. I suspect that's kind of like soldiers in long-term dangerous deployments, there's a lot of waiting and everything is normal and you get into a routine, and then without warning you're in danger and everyone's moving and serious, and there's no time for jokes because everyone's just trying to focus on staying alive. But again, I'm one of the lucky ones. I'm still lucky enough to have the privilege to worry about this. I'm still lucky enough to wake up and see the amazing person my child is becoming. I've been lucky enough to be able to finally push myself into doing the charity work I've always wanted. I want everyone to have the opportunity to feel this lucky.
Eh won't go that far myself. I'm here because I've gotten a lot of help along the way when I've really needed it. I just try to give back in whatever way I can with the time I have left. I have good days and bad days still. It's just about not letting the bad days be more than the good days.
Patterns. There's very rarely one mutation. It's all about patterns. The problem, and what makes this a potentially tractable problem in the age of machine learning, is that we can now catalog an arbitrarily large number of patterns and associate any given new cancer with some number of known patterns.
These rare mutations are actually do come up in other patients and are worth studying to work out a molecular mechanism that explains the cancer. Mutations that drive cancer usually affect the same couple of pathways, and different mutations could bring about the same phenotype.
I was unaware of this 10 year rule. Here at UH Cancer Center I know there are teams with samples in the freezer from decades ago. Any links where I can learn more?
You can keep samples as long as you want. The CAP requires accredited labs to keep them 10 years. Attorneys simply want a record retention policy, which creates a natural tension many lab directors respond to by getting rid of the blocks after 10 years. See (1) for the checklist, the specific line item is ANP.12500. In theory things can get kicked to a biorepository, but the standards for a CAP-accredited biorepository are quite high. Running a biorepository that's not accredited raises the specter of questions like "What are you doing with this material, doctor?", so a lot of folks would rather burn our hope for the future than have any possible source of questions about what they're doing.
I see. I guess on the bright side collecting new data is becoming exponentially cheaper. For example, this year the world will collect more heart rate data than it did than all previous years in human history combined. So even if we lost all heart rate data from decades past, we generate that quite quickly now. You certainly lose a lot of longitudinal value, but perhaps that won’t turn out to be too critical? (Or perhaps it will)
I think there is a problem even on a higher level. I am not aware for example that the detailed history of cancer patients, is recorded centrally for later data analysis. Which treatment worked, which did not? Even airlines now share data about flights to help engineer around the world to find remedies for problems with small incidence levels. I wonder why that is so complicated in the case of cancer
Researchers can usually request that data from the hospital records (needs to be specifically requested due to HIPAA i believe) and some of it is already in public databases like tcga.
I asked the director of a local tissue archive here in Australia. Their specimens go back decades. The regulatory minimum is 10 years for many tissues (more for paediatrics, and indefinitely for clinically significant rarities in molecular genetics) but in practice they hold longer than they have to.
Interestingly, the CAP has seen very strong uptake internationally. For people in charge of nation-state level assets like major medical research centers, the scientific rigor the CAP has learned to impose on laboratory medicine over the last 50 years sells itself.
Meanwhile, there's this perverse medicolegal incentive to retain the excised tissue samples for the minimum necessary period of time, which is 10 years for US laboratories accredited by the College of American Pathologists.
You heard it right, the lawyers won. We spend medical administration time filling out medical administrative paperwork to spend medical care dollars burning most of the cure to cancer. Every year.