I was diagnosed with NET cancer recently and my doctor incorrectly ordered the older radiotracer scan. It only showed 1/2 of my tumors, missing the most important primary tumor. This newer scan/radiotracer showed double the number of tumors including the most important step of finding the primary. I will soon have cytoreduction surgery to remove the tumors. Unless you have other biomarkers showing cancer, the issue for this scan is cost - $2-5K. You would not do it casually. Contact me if you want to see a side by side comparison of this new scan beside an older one.
Thanks for sharing. You got FDG PET ("older") as well as FAPI? Are you in the US? Curious if FAPI is already in wide use.... does FDG not work that well for NET ?
I am in the US and FDG PET does not work for NET. The "older" scan was Pet radiolabeled with indium-111.
Comparison is here: http://prntscr.com/o02jsg Left is the newer scan, which uses Gallium 68. The primary tumor is uppermost right side, liver metastasis is left side, and small lower lighted up areas are lymph nodes. All will be removed soon. Lit up area below is the radiotracer in my bladder before urinating. :-)
Strange to see images from my specialty here on HN, but no. On the right hand side you have a classic planar OctreoScan (and from posterior view at that). What you have on the left side is a 68Ga-DOTA-(TOC/NOC/TATE) scan, not the new 68Ga-FAPI scan which I believe is only available in Heidelberg, Germany for now. While 68Ga-DOTA-(TOC/NOC/TATE) are probably not as good as 68Ga-FAPI (we don't know that yet, pending research) it is markedly better than OctreoScan, especially for small primary lesions, as is often the case in NETs. Source: I am an MD specialized in nuclear medicine.
Yes I have all the Dicom files and put all the images on a password protected server so I can share with prospective surgeons. This really helped me find the best possible surgeon. THANKS!
Minor side note: I did that too but found that institutions were locked down and could not access my public server, and they wouldn’t accept a usb drive with the same data. They were only set up to receive FAT dvds - and I spent many, many hours duping DVD’s for doctors in their waiting rooms.
The USB thing might be a security policy in action. The DVD (and that's weird, because I think I've never seen DVDs, but lots of CDRs) is probably a historical thing related to the DICOM Supplement 19 General Purpose CD-R Image Interchange Profile standard.
Good luck with the surgery! You probably got Octreoscan which is used for NET - it's SPECT imaging which is generally worse that PET, but (until now) there wasn't a good PET tracer that works in NET. Awesome to hear a story of how this new tracer could really help patients.
Sorry, this is not true. 68Ga-labelled DOTATOC, DOTANOC, and DOTATATE are used diagnosis and therapy of NETs for more than 10 years. They are widely available in Europe and in some major US centers. If the new 68Ga-FAPI will be better remains to be seen, I suppose the Heidelberg group will publish some research soon.
I just took him at his word that it was FAPI & was asking if it is available in the US - also I favor PET as a modality b/c it's quantitative. No judgement on a particular tracer.
You are correct it's only in the last several years this Gallium 68 scan has been available in the US, but was available in Europe long before - like many cancer treatments.
I've had a couple NETSPOT (w/gallium68 dotate) scans this year after surgery in January to remove mass revealed it was a NET. Would be interested in chatting about it. I haven't requested the images yet, but it sounds interesting.
Anyone have any experience getting tested for cancer when marked as "healthy"? I contacted my PCP and some other random places asking to get a cancer screening and nobody would give me the time of day - "that's not done".
At most they said they would do a blood test which checks for a couple types of cancer. I asked if I could get a CT and have a professional go over it. nope. But something like this tracer is what I'd like to do.
MD here. It's "not done" because it could hurt you.
Here's the Bayesian argument:
- Let's assume a lab test (or imaging test) has a 1% false positive rate and 100% sensitivity (that would be pretty good for many tests and imaging modalities!).
- The cancer you screening for has a 1% incidence as well (low-ish, for the sake of argument).
- Therefore the chance that a "positive" scan would be due to a false positive or a true cancer would be equivalent (i.e., the Positive Predictive Value is 50%).
If we did this at population level, we'd be massively overtreating and over-biopsy-ing... not the desired outcome.
Maybe figure out a better way to verify that doesn't require biopsy? Maybe use machine learning in conjunction with better data? I don't know enough but there must be other techniques we could devise that don't require major invasive surgery every single time.
Just sitting on our hands on this information and letting people die is the worst decision. We need to improve our technology to get better results, not throw our hands up in the air and say the problem is too hard.
Well the ways that don't involve surgery are themselves less accurate heuristics with false positives. How can they calibrate without being certain if it is a true or false positive or negative?
Better imaging is an option but that often falls into dangerous in itself or easier said than done like say trying to do detection of cancer by scent.
Machine learning is fundamentally GIGO and tends to learn smartass shortcuts if one isn't careful. "The healthy sample data is less zoomed in while the cancer ones are zoomed in - therefore full chest x-ray is fine but a lung X-ray is cancer."
My limited experience is that for small contained cancers imaging can't predict the future course for the tumor because you need cellar resolution that you can't get without a biopsy and a microscope and or genetic tests.
Even then it's really common to see a biopsy come back as 'indeterminate'. If it's indeterminate then now what? You either punt and do nothing or go for excision.
Consider this tidbit: A lot of slow moving low grade cancers it hardly matters when you find them. Early or later matters little. Whereas aggressive cancers often are untreatable. Find them early, find them late you'll die either way. And fast growing cancers often fully develop between screenings.
This type of attitude is typical, where one likes to dismiss new ideas and keep status quo instead of coming up with new ideas or innovations.
The point is that there is an opportunity for the Steve Jobs of health care to come up with a way, a new innovative novel way, for classification of tumors to be improved without needing biopsy. Once we have that, then we can take tests to our heart's content. Right now, the attitude of "we shouldn't have people take tests and detect cancer early because our current method of determining if they are cancerous would make it too hard" isn't acceptable.
Presumably none of us here are inventors of new medical technology. We are just amateurs talking about this casually on Hacker News. Saying it's "unacceptable" doesn't change anything from either the doctor or patient's point of view. Until the new tech comes along, we need to accept the limitations of what we have now.
I agree with you, but I think the original point was that we may already have technologies that could be employed, but that there is concern they are not being used
”Just sitting on our hands on this information and letting people die is the worst decision.”
If the alternative is saving a few who would otherwise die, but taking away more healthy days from many others or, possibly, even killing healthy individuals because they get overtreated, not spending money on screening _now_, but instead spending money on better understanding is the rational thing to do.
And that’s exactly what we are doing. Technology advances, models get refined. Maybe, some day, statistics (and ethics committees) will decide population screening does make sense.
And it isn’t necessarily about major invasive surgery. Even small procedures, done unnecessarily often enough, may already swing the balance.
”Screening may identify abnormalities that would never cause a problem in a person's lifetime. An example of this is prostate cancer screening; it has been said that "more men die with prostate cancer than of it". Autopsy studies have shown that between 14 and 77% of elderly men who have died of other causes are found to have had prostate cancer.[
Aside from issues with unnecessary treatment (prostate cancer treatment is by no means without risk), overdiagnosis makes a study look good at picking up abnormalities, even though they are sometimes harmless.
Overdiagnosis occurs when all of these people with harmless abnormalities are counted as "lives saved" by the screening, rather than as "healthy people needlessly harmed by overdiagnosis". So it might lead to a endless cycle: the greater the overdiagnosis, the more people will think screening is more effective than it is, which can reinforce people to do more screening tests, leading to even more overdiagnosis.”
Would re-screening everyone positive N weeks after the first positive, and then re-screening the new positives again N weeks later, alleviate this (absent other symptoms)?
I'm assuming here a growing cancer is easier to detect over time.
No, this is the wrong argument. What would happen is, eventually people just wouldn't believe any of these tests and they would become useless, even when they did reach a high level of PPV. Also see the point about biopsies - definitely not non-invasive, often require surgery. Also cost - you're now looking at 5-10k extra charges.
I assume every doctor's visit sees you getting checked for every type of condition every time, or do you want your doctor to play the odds and only look for things you're likely to have?
There's plenty of harmful ways to die, and you'll find they don't check for most of them until they have a decent reason.
I did Health Nucleus which includes a whole body MRI (no ionizing radiation exposure) and a bunch of other stuff geared towards looking for cancer. Apparently Prenuvo in Vancouver is considered the best now. It’s a few $k and insurance doesn’t cover it, but there are a bunch of options for self-pay to be more aggressive in primary care / health surveillance.
This stuff about “overtesting” and “iatrogenic risk” is silly. It’s one of the biggest misconceptions in medicine today. Every test has a sensitivity and a specificity and must be interpreted accordingly. Not doing that properly is a doctor problem not a test problem. In terms of spurious findings, it is usually possible to stack diagnostics until the answer becomes clear. There are lots of things between a CT and a biopsy.
I'd like to learn more about companies like Prenuvo, is there some online community somewhere where you heard Prenuvo was the best? Or some other resource where I can learn? If so I'd appreciate a link, thanks!
I hear about these things through the grapevine in San Francisco. There's a subculture there that's all about optimizing their healthcare with as much data as possible; having seen what's possible, you really come to believe that primary care as it exists today for most people under 55 is basically a scam. I have two personal friends who are probably only alive now because they were more proactive about getting health data! (No joke, abnormalities found on MRIs turned out to be early stage cancer.) And a bunch more friends who are overall much healthier than they were before because now they have numbers to move. (Or numbers that move faster: for example, using Dexcom G6s has been catching on as a hack to lose weight because the gradient is much better behaved than a scale.) I also saw one case where someone was diagnosed with cancer and they put together a research team to help guide their treatment... and they ended up developing all this experimental medicine for him which, while ultimately unsuccessful, is thought to have added about a year of life. (Did you know that the FDA can grant single-patient INDs over the phone within one day? [0])
There's a lot of accumulated knowledge out there on how much better healthcare can be for motivated patients who can afford to pay for some of it out of pocket, but it's seen as pretty contrarian, so not discussed that openly. (Just see the other comments in this thread about how "overtesting" is a dangerous waste of resources...)
I don't know of an online community or blog that collates all this info well, but Peter Attia's blog/podcast is a good place to start: https://peterattiamd.com/
They don't for good reason. Full body scans always turn up unexplained growths which need to be biopsied, causing pain/suffering/complications often resulting in a non-cancerous result.
Even the wealthiest individuals with personal doctors rarely perform full body scans for that reason.
Other comments have spoken about why random screening is a bad idea. But the real problem is the tests we have just aren’t good enough. What are you hoping to diagnose with a CT scan? If you don’t smoke, the most common cancer you’ll get is breast/prostate and colon. CT scans are close to useless for detecting those cancers (If you do smoke then there is some evidence for CT screening).
Also note that image based screening has a resolution of around 5-10mm (CT and MRI closer to 5mm, nuclear medicine closer to 10mm). Once a cancer is this size, we are already talking about over 100 million cancer cells in your body. You will need surgery, and possibly chemotherapy and radiotherapy to eliminate these cells once it gets to that size.
What you actually want is prevention, not early detection.
This doesn’t change anything, I’m sure you know that the smaller the lesion the harder it is to determine what it is, and they are impossible to biopsy or resect.
The Iatrogenic risk is too high. CT and MRIs have false positives or reveal benign tumors/conditions that have to be investigated which result in additional testing, surgery etc... So in the absence of symptoms or known genetics / family history it is just not done. But fear not, in the next 20 years we will likely have blood based tests for finding some early cancers though.
You should ask yourself why do you want to get checked for cancer.
I spend 10000x more time and effort monitoring the health and performance indicators of my servers compared to my body, it's astoundingly ignorant that we aren't more honed in on early detection for all sorts of issues.
False positives in the case of server monitoring are extremely rare and easy to detect when they do happen.
Can you imagine if your server monitoring runs once per minute and randomly fails 1/100 times? You'd be getting panic-inducing server is down emails many times per day. Such server monitoring would produce little to no value as you'd quickly ignore them as noise, just like you should avoid doing more tests like this on your body.
Additionally, CTs in particular produce ionizing radiation and increase your risk of cancer. If monitoring your server increased the risk of it failing, would you still want monitoring on it?
The health and performance indicators of your servers are reliable and (relatively) accurate. Analogous indicators for the human body are much less so. False positive and false negative rates for many different kinds of tests/exams are uncomfortably high. In cases where patients have other signs/symptoms suggesting an underlying issue, it does make sense to use these tests and exams, but in otherwise healthy patients, you may do more harm than good.
Being on dialysis, I get around 20 blood tests every month. Waiting for the results is nerve-wracking because I have a few tests that are borderline and I'm expecting the worst. There is also some random fluctuation which can cause me worries. The results are certainly useful to stay healthy but at the same time, for a day or two around the test time, I just can't concentrate on plan for anything.
It’s disgusting how little freedom there is in this area. Even if a doctor wanted to do this for you, they would face criticism from their peers. It’s a form of doublespeak when the messaging is “early detection is key” but you can’t actually use the best tools available until you are sick. The response that people could over react on marginal cases and do more harm if they scan early is incidental- if they scanned more healthy people they would learn how to deal with marginal cases better. I think your only hope is randomly becoming friends with a doctor who self experiments and thinks you are trust worthy enough to let in on it. I don’t even know how possible that is because the drugs administered are probably well controlled, and the machines might be logging information which makes it hard to do privately. Perhaps this is a good candidate for a medical tourist resort start up.
There are a number of different blood tests for these 30 cancer types, each of which can detect a high likelihood of cancer. Each blood test tells you YES or NO. Then this type of radiotracer scan will tell you WHERE. Toray Japan is developing this test: https://asia.nikkei.com/Business/Companies/Japan-s-Toray-see... Until this is available you could ask your PCP for the corresponding blood test for all the types of cancer you want to check.
Blood tests really don't tell you yes or no. They give you quantified biomarker concentrations which are correlated with certain types of cancer. In some cases the diagnosis is clear, but often it's more of a gray area.
True, if the level found is 150% of normal, it's a problem. In my case, I was misdiagnosed for 10 years. When my docters finally ran the test for the right biomarkers, they found levels 50 times normal. So maybe the tests need wider margins to screen out false positives.
Out of curiosity: What would you be willing to pay for it? Did you mention you pay yourself? Or do you expect your healthcare provider to cover the thousands of dollars for tests without any indication?
Not sure why you think that, hospitals charge insurers a lot less than their sticker price.
Pricing is usually done as multiples of what Medicare pays, so insurers will build their network and usually have a cap at 2x Medicare. If you are taken to an out-of-network hospital during an emergency, the hospital can charge their regular prices, although this usually gets negotiated down for extended in-patient stays. As an uninsured individual, however, you would be liable for the complete amount, which is a lot more than what the insurance pays.
A CT scan involves some radiation exposure so it would be unethical for a doctor to order one unless you're at high risk of cancer or have some other symptoms.
I think you will have a hard time getting anyone to scan you. Currently the tests are expensive and doctors have to argue with insurance companies enough as it is, for patients that exhibit symptoms.
The default answer is that the extra scanning will increase risk to you, which really isn't true if you compare that radiation to other forms of radiation you get throughout the day. 10 millisieverts is nothing. [1] You can compensate for this easily by increasing your bodies own cell autophagy.
In the mean time, you should research anti-cancer foods and foods that cause cancer and increase cell autophagy. Preventative natural medicine has many benefits beyond just preventing and treating cancer cells. Obvious foods to stay away from are anything with sugar (and all its forms, there are many) and glyphosates (good luck with that, everything is sprayed with them). Cance cells live off glycogen and oxygen.
Anti-cancer foods include aged garlic extract, bioavailable enhanced curcumin, all the cruciferous vegetables, sulforaphane extract from broccoli sprouts, fatty fish, apples, beans, to name a few. For those with metabolic syndrome which increases risk of cancer, there is Berberine which is anti-tumor (natural alternative to the prescription metformin)
I am not a doctor. This is unpopular nutritional advice for naturally reducing all cause mortality.
1 rem of radiation exposure causes cancer with a probability of 0.05 % according to Wikipedia[1].
It seems such a scan causing a cancer would be due to a very low probability event on a cellular level. From that point of view the above calculation looks reasonable. It is only after that when the additional macroscopic influences caused by a specific person's body/environment come into play that your point applies.
This was interesting so I started from that 0.05 % per 1 rem and did the inverse calculation. For 2500 rem this gives about 1-(1-0.0005)^2500 = 71 % probability of developing cancer. I also made a plot from 0 up to 10000 REM[2]. The incident rate seems to be pretty much approaching 100 % around 10k, so our results differ by about a factor of 4.
25 at 100 rem, again 1 cancer, but they now have ARS (acute radiation sickness). This is interesting since one would think ARS would definitely cause cancer, but it’s only 1/25, whereas 1/3 of people will develop cancer.
8.3 people at 300 rem, which is the 50% threshold for death from ARS, but still 1 cancer.
I’d think 2500 CT scans/year is a typical number for a hospital. Can they be sued for causing that single incidence of cancer?
Why is this not available? It's ridiculous that we can't do this conveniently. All I read about is new tests and detections, etc and they are only available when it's too late. Things like pancreatic cancer and liver cancer are death sentences and on the rise. Why can't we test for this sooner rather than later?
Have been chatting with a radiation oncologist about this. His response: "imaging appears to be the same as F18-FDG-based PET. Just a bit more convenient since the patient doesn't need a normal blood sugar. And prob 2-10x the price"
The great advantage of these tracers is that they target actual structures over-expressed in cancers, which means they show far higher specificity than something like FDG. That means they can be used to find micrometastases, and with a different radio-label also be applied for highly targeted radiation therapy.
Source: I used to work in the Heidelberg lab that published this study.
At first glance, this new tracer seems to yield a lower normal tissue uptake, and the reduced background signal could make it easier to locate tumours. FDG gets taken up by several organs inc heart and brain, whereas this tracer doesn’t appear to do so to that extent.
This happened to my mom when she had breast cancer. I wonder if this is a normal progression with that type of cancer? I have no idea why they did it, but they did do an autopsy when she died and her doctor basically said she was riddled with tumours throughout her entire body (she lived 7 years with cancer after diagnosis, who knows how long before). When I saw these images that's immediately what I thought of. It's very unsettling.
Really impressive images with apparently regular PET-scans, so could be available for general use rather quickly. It's advances like this that enable medicine.
