I worked as a computer programmer at the U.S. National Cancer Institute (NCI) for 26 years during which I developed great respect for NCI.
The computer department that I worked in supported the group at NCI that prepared material for their public website. I encourage everyone to have a look at that site, cancer.gov, to find a wealth of information about treatment, science, complementary medicine, centers of excellence, screening and prevention, and many other topics.
A "Health Professional" version contains all of the technical detail for doctors and scientists and includes hundreds of pages and hundreds of citations to the scientific literature.
There are also similar patient and professional versions of statements on diet and nutrition, prevention, screening, clinical trials, and other topics. Use the menus or the search box to find them.
Who produces these documents?
Final responsibility for the content of the publications on treating prostate cancer (and breast, lung, colorectal, and other cancers of adults) comes from the NCI's "Adult Treatment Editorial Board". The members of the board are mainly recruited from leading research centers. Only a small minority of members are NCI employees. The current composition at any given time can be found here:
A staff of NCI employees and contractors search the National Library of Medicine's Pubmed database every month to find all of the new documents published in the field of cancer since the last search. Typically there are an average of around 3,000 citations and abstracts found each month. These are passed through four levels of review. At the first level citations are filtered out if their abstracts obviously contain no significant new information, or are not reporting relevant research results. At the second level the remaining documents are reviewed by more experienced people who may procure and read the full text of the articles from NLM. They filter out articles that are not deemed significant or relevant. For those that are, they typically assign two to three board members with specialties in the cancer type or treatment type to read the articles. The full text of each article is procured and sent to those board members with a request for their opinions of them. At the third level, the selected scientist and physician board members review the articles and make a recommendation as to whether anything in the articles provides evidence that something in the NCI recommendations should be added to or changed. Those documents that are so recommended are passed on to the fourth level, a full meeting of the Editorial Board. At one of those meetings, there are typically five or so per year, the board members discuss and debate what changes should be made to NCI recommendation, either in the text of the recommendations or in the bibliographies that accompany them. Changes are made as necessary, reviewed, and published on the cancer.gov website.
As one of the computer programmers who supported this process I got to see it in action. I was most impressed. The process didn't produce the very latest up to the minute results. It was heavily based on peer reviewed scientific publications, rather than personal opinions or the latest buzz circulating in the scientific community. It was a conservative process. I thought that everyone was very concerned to only recommend things for which the evidence was clear and based on carefully devised and analyzed levels of evidence (see: cancer.gov/publications/pdq... ). I can't say that the process was perfect. I don't know of any process conducted by human beings that is perfect. However it has evolved over many years of practice and is as good as the highly intelligent and experienced people who participate in it were able to make it. I trust it and I don't know of any better one.
I believe that the National Cancer Institute is a knowledgeable and reliable source of information, and I recommend it.
The material on this site seems outdated and has not been updated. e.g. the prognosis for metastatic prostate cancer is reported to be 1 to 3 years. In last few years with availability of new drugs such as Zytiga, lutamides etc. the prognosis has improved and is in the range of 2 to 10 years.
Also, it mentions that higher initial PSA level means poor prognosis. Not true at all. Some of the most aggressive prostate cancer cells produce very less PSA whereas high PSA producing cells are less aggressive.
Internet is full of obsolete ,outdated information and people get scared due to old data presenting bleak prognosis.
The information is actually updated regularly. The update date is shown at the bottom of the document. For example, the Prostate Cancer Treatment - Health Professional Version was last updated on September 20, 2019, just six days ago as of this posting. For common cancers there may be an update at least several times per year.
I think the problem is not that the NCI people are slow in looking at new information, but that they're only relying on information published in peer-reviewed journals that meets their standards for levels of evidence, and then they're going through their own editorial board peer review process inside NCI. The disadvantage of that is, as you point out, real and significant. However the advantage is that it at least holds down the rate of errors. You're less likely to find that the information in the NCI documents needs to be retracted or contradicted than would otherwise be the case, and you're less likely to find support for the over-exuberant claims of some optimists who make claims without published studies to back them up.
Still, I think you're right that people should understand that the NCI approach is a conservative one.
Thanks for the post. Did a few link clicks and saw the following on ARV 110. Looks very encouraging for CRPC . Hadn’t seen this before, any others with additional info?
That was an interesting article though readers will have to know some cell biology to understand it. Here's my interpretation of it:
All cells, including prostate tumor cells, have organelles inside them for both the synthesis and the "degradation" (chopping apart and recycling the components) of proteins. Degradation is achieved by attaching specific molecules ("ubiquitins") to the proteins which cause them to be spotted by cleanup proteins that find the ubiquitins and drag the whole protein/ubiquitin complex to the recycling centers in the cells.
What the researchers are trying to do is create drugs that will find prostate tumor cells, and insert chemicals into them which will ubiquitylate" proteins needed by the tumor cell to continue to live or multiply.
Will it cure cancer? Well, cancer is a pretty stubborn beast, but if the new drugs work at all, they will surely help and the treatment may work just as well on castrate resistant patients as on others. My hat is off to the genius biochemists that came up with this.
Thanks you Alan - I too appreciate the compassion and broad nature of the answers you post, and I think now I have a little better understanding of where those characteristics have their genesis....
Very thoughtful, important to know and much appreciated Alan. Curated information is very useful in establishing the quality of published papers. I will peruse the material available on their website more throughly. Cheers, Phil
Thank you so much for explaining the process. I always wondered how that was done and how reliable the information is. I think I will refer to it more often as a result of the explanation you have given.
Thank you, Alan. Much appreciated. But, they should update that old “life expectancy “ range.
Thanks for the post. The "elephant in the room" is the lack of proper trials of (a) Causes (b) Diet effects (c) Lifestyle effects (d) Alternate treatments. The elephant exists because these things are not patentable, and cannot be sold at a high price. No trials = shortage of good data and a shortage of this sort of information. But, the "missing" info is slowly creeping in - they even mention that "High Dose Vitamin C is well tolerated and gives a better quality of life with reduced side effects in some combinations." Sodium Ascorbate will never get FDA approval because they do not deal with vitamins and supplements. Thus, a most fabulous trial with 100% outcomes will never get FDA approval, and patients will continue to be short-changed about the options available to them "in the mainstream". But they are learning there are "alternate" doctors who have done their own trials over decades and learned the other 90% about the subject not on this site. What a pity - it means most patients receive sub-optimal treatments and shorter life expectancy. This forum has many examples of just that.
Agree totally! Trials with potential to make big money get funded by the pharmaceutical industry. Others like the PATCH trial for estradiol in lieu of lhrh agonists are funded in this case by the (UK) government.
It is true that the pharmaceutical industry spends money to make money, not to promote health. I think one of the biggest negative consequences of that is that we get hundreds of "me-too" drugs, drugs that do the exact same thing that other drugs do (Lupron, Eligard, Viadur, and closely related drugs Zoladex, Trelstar, etc.) Another group is Viagra, Levitra, and Cialis. There were seven classes of blood pressure drugs with a total of 44 brand names at the time that an NCI study found that none of them were any better than simple, cheap diuretics (see: nih.gov/news-events/news-re... ).
Why are millions or billions of dollars invested in developing copycat "me-too" drugs when the need for truly new drugs is so great?
Personally, I think the solution to the problem is to enable capitalist drug companies to continue to create new drugs, but to put more money into government sponsored research. The government should pay for more trials of promising non-patentable treatments. They do quite a lot already in the U.S., U.K. and other countries, but I'd like to see more.
I'd also like to add FDA regulations that require new drugs to demonstrate significant improvements over existing drugs (more effective, less toxic, cheaper, easier to administer, works for people that don't benefit from existing drugs, etc.) rather than just require that a drug be safe and better than placebo. That would suck some of the private research money out of copycat me-too drugs and direct it to new drug development.
It will be an uphill climb to convince the lawmakers sponsored by the drug companies to do that. Maybe Elizabeth Warren has a plan for that
Agree. It is a scandal, but as long as the FDA is funded by the drug companies and the executives engage in a friendly round-robin employment game, we will see more scandals to come.
When you are on the "outside looking in", the treatment for cancer is quite different - for starters the price in the USA is about 5 time the price elsewhere. and there is not the same fear of litigation. This almost rigidly controls the US doctors to follows outdated (but "safe" from litigation) procedures that are nowhere near the right thing for the patient. I make no apology for making a nuisance of myself in this forum to point out some of the idiotic (usually "for money") things US doctors do - or rather things that they do not do because it is "not in the book".
I see the USA has slid to 43rd in the world rankings for medical care as result of this blinkered view. Indeed, if a cancer victim has the money, they need to look seriously at a better chance to survive if they get on an airplane, But it is good to see (I admire them greatly) some US doctors are trying to do the right thing, in spite of all sorts of peer pressure and legal threats. It gets very difficult to hide survival rates that are double what the "usual" guys are getting and -gasp- many complete long term remissions. They all have one thing in common - they do whatever they can to boost the immune system and let the body heal itself as much as possible.
I don't think Elizabeth Warren or AOC has any good plan to raise that 43rd position. In fact I think the drug companies will welcome more selling into an unlimited market with deep pockets. They are going to need a lot more money to pay damages for things like Oxycodone, Roundup, Statins, and Ranitidine.
But let us be thankful for the little chinks of daylight getting into the mainstream literature - it is the start of a long overdue "catch-up" to the rest of the world.
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