The above headline comes from information released yesterday by the American Society for Clinical Oncology (ASCO).
According to a report on the MedPage Today web site this morning:
When the American Society of Clinical Oncology (ASCO) commissioned the Harris Poll to conduct its second annual National Cancer Opinion Survey, it did not expect to learn that 40% of respondents believe cancer can be cured with the use of alternative therapies alone.
ASCO’s chief medical officer Richard L. Schilsky, MD, told MedPage Today that he found it “both a surprising and frightening piece of information that people harbor those beliefs,” and noted the need to educate the general public about these misconceptions.
Alternative forms of care — from supplements and dietary interventions to exercise and acupuncture — in the management of cancer certainly all have their potential places in the management of specific types of cancer in specific patients. However, we would point out that there is absolutely no evidence whatsoever that such alternative forms of care can actually eliminate cancer in an appropriately diagnosed patient.
Alternative forms of care may, on the other hand, be able to help to delay progression of specific forms of prostate cancer (although the evidence supporting this idea is still evolving) and to improve patients’ quality of life. But they aren’t going to eliminate the underlying disease.
According to the information on the MedPage Today web site:
- The poll was conducted among 4,887 adults aged 18 years and older.
- 1,001/4,887 respondents (20.7 percent) were either cancer patients or survivors.
- 40 percent of all respondents expressed the opinion that alternative therapies alone could be used to cure cancer.
- Younger people (aged 18 to 37 years) were more than twice as likely as older people (> 72 years) to believe that alternative forms of care could be administered with curative intent in the management of cancer
- 47 percent of younger people
- 21 percent of older people
- The people who believed that alternative therapies alone can cure cancer included
- 22 percent of cancer patients or survivors
- 38 percent of family caregivers to cancer patients
The survey defined alternative therapies as enzyme and oxygen therapy, certain diets, and vitamins and minerals.
Dr. Schilsky pointed to data from a study published in 2017 (which we had commented on here), which has already shown that:
mortality was 2.5 times higher among patients with common cancers who chose only alternative medicine instead of standard cancer treatments such as surgery, radiation, chemotherapy, immunotherapy, and hormone-based therapies.
Quite why the American public has this level of delusional belief about the abilities of alternative forms of care is undetermined, but it is certainly in line with what we would consider to be a low general level of medical and scientific knowledge and a relatively poor level of high-quality scientific education that is prevalent in the US.
However, we would also repeat the comment that we made when we reported on the 2017 study referred to above:
The “New” Prostate Cancer InfoLink is of the very firm opinion that, for non-communicable diseases (and all forms of cancer in and of themselves are believed to be non-communicable), every patient has an absolute right to make his or her decision about how he or she wants to be treated — however odd or unusual that decision might be. (Communicable diseases that can lead to the infection of others are a different category of illness and different “rules” can reasonably be applied.)
Perhaps what we should have said previously was “… however odd or unusual or ill-advised that decision might be”.
Filed under: Living with Prostate Cancer, Management, Treatment | Tagged: alternative, care, delusion, knowledge |
THE "NEW" PROSTATE CANCER INFOLINK 
My wife had metastatic ovarian cancer and refused surgery and chemotherapy until she was on the point of ileus. It was a tough time for me as an oncologist to meet the hospital system and have to defend her right to choose for herself despite the fact I professionally disagreed with her decision. She used more than 10,000 dollars for the alternative treatments that were without any effect and she died of progressive cancer. So in polls of family members please make sure the questionners ask the right questions to reveal what family members might experience as relative to persons on the alternative track of treatment.
That’s discouraging, but in line with other evidence of widespread appalling ignorance and limited ability to observe and think in our society. At least some of these messages get through, with the aid of policy, such as the message that smoking is seriously harmful.
I’m wondering if there is comparable evidence from other developed countries.
Mike:
“every patient has an absolute right to make his or her decision about how he or she wants to be treated -— however odd or unusual that decision might be.”
Absolute right? Do you then believe that the FDA should not have the right to tell patients what drugs, diagnostics and procedures they are allowed to get?
Allen:
No. The FDA has a “higher responsibility”, which is to make sure that the products that are available on the market (both by prescription and as over the counter agents) and are promoted as having specific therapeutic benefits meet criteria that justify how they are promoted and used. That “higher responsibility” is in a societal interest as opposed to the interests of any one particular idiot.
In other words, just because an individual happens to think that he can cure his cancer by taking alcohol enemas on a daily basis doesn’t imply that anyone should be able to promote alcohol enemas as an effective form of treatment for cancer. You or I as individuals have the right to ignore the evidence and decide to treat ourselves (with or without the help of a medical professional who agrees with us) any way we like if we can get hold of the relevant products legally, but the FDA is in the business of ensuring that the public as a whole, and the professionals who apply products in the diagnosis and treatment of disease, have access to reasonable evidence supporting claims about the effectiveness and safety of those products.
I would remind you that any qualified physician can theoretically prescribe any drug he or she wants to “off label”. Whether an insurance company would be willing to pay for that drug for that particular use is a whole different issue. But what this means is that if I can talk my doctor into giving me some bizzare form of treatment (assuming I can find such a doctor and that I am willing to pay for it myself), then I can get pretty much any form of treatment I am stupid enough to think might be good for me … but the FDA is there to make it clear that the evidence available does not generally support either my dumb belief or my doctor’s willingness to comply with my dumb belief.
Dear Finn:
I am very sorry to hear that you had to deal with a situation like that. I am sure it was extremely difficult for you.
The FDA doesn’t only guard against unsubstantiated claims, it also prevents new drugs, diagnostics, and therapies from being legally used at all in the US. Some say this is government acting as Big Brother in protecting us from ourselves. Others say that this is a necessary function of government. If you believe that the government has a role to fill in assuring safe and effective drugs, diagnostics and therapeutics, the FDA rules should apply in all cases, including off-label use and naturally occurring supplements. The exceptions made for off-label use and supplements are very arbitrary. How can we consistently argue for a “higher responsibility” only in some cases?
I personally find it troubling that Vitamin E is available as the 400 IU formulation found to cause prostate cancer in the SELECT trial. At minimum, shouldn’t the FDA be allowed to enforce a black box warning, or perhaps make it available by prescription only? Or perhaps there is an “in-between” measure, where anyone who wants it can get it (like Sudafed), but they have to sign a waiver stating it is known to cause prostate cancer.
Per some studies: Diet and some supplements may be of use in preventing cancer. Vitamin D3 may prevent prostate cancer from becoming aggressive. Not all alternating treatments are equal and may not be of any use at all. Without some research and guidelines it’s all just a guessing game.
For prostate cancer treatments like, hyperthermia, CoNexus, boron neutron capture therapy, cannabidiol (CBD) and tetrahydrocannabinol (THC), gold manoparticles, PARP inhibitors, platinum, and orphan drugs (dichloroacetate, etc.) should be investigated and used when appropriate.
Dear Allen:
(1) I would dispute your statement that the FDA “prevents new drugs, diagnostics, and therapies from being legally used at all in the US.” Actually, the FDA has a whole series of methods designed to make investigational agents and diagnostics available to patients. The problem is often that the companies who are developing and hold patents on the rights to the use of those agents are not willing to make them available outside of their own clinical trials (for all sorts of different reasons).
(2) The laws under which the FDA has to act have been written and modified by Congress over most of the past 70 years. Some of those laws could do with major overhauls. Good luck with getting Congress to take such actions! The FDA does not have the independence to do what many of us would like them to be able to do by simply taking executive action. They (like the rest of us) are required to follow the laws of the land.
Dear JJ:
The evidence that vitamin D3 “may” prevent prostate cancer from becoming aggressive is limited, and (as far as I know) no one has ever carried out a well-structured trial in an attempt to prove this. It would probably require something like 10,000 or more patients and numerous millions of dollars. The only people who could afford to do such a trial are the National Cancer Institute, whose budget to support clinical trials is limited in the extreme these days.
Almost of the other products you mention have been “investigated” to a greater of lesser extent. And there are ongoing Phase III trials of PARP inhibition in the treatment of prostate cancer specifically. Again, whether enough money is available to carry out all of the studies that you might like to see carried out is a very different issue.
We can all thank Senator Orrin G. Hatch of Utah for the American right to waste our money on useless OTC supplements, many of which do not even contain any trace of the substances that are listed on the label. In 1994, he pushed through legislation that prevented the FDA from regulating OTC supplements.
Manufacturers do not have prove safety or efficacy. The FDA has to prove that they are unsafe in order to remove them from the market. Over the years, Hatch has taken millions of dollars in lobbyists’ money and his son is a lobbyist for the multi-billion dollar supplements industry. We can’t blame the FDA for the mess we’re in.
The FDA absolutely does prevent the drugs they reject from being legally sold. Any drug that the FDA rejects is not available to anyone by any avenue. Try buying Vioxx, for example. I’m pretty sure that if you tried to sell Mike’s Snake Oil outside of a NDA, and it is not a natural product, they would shut you down and fine you. I’m asking a moral question, not a legal one. If you truly believe what you wrote that for non-communicable diseases “every patient has an absolute right to make his or her decision about how he or she wants to be treated,” why then is it morally OK for the FDA to interfere with that “absolute right.”
The other point I’m making is this: If you believe that the FDA does have the moral right to reject a drug and prevent me from buying it (e.g., Vioxx) — why should you be allowed to sell (and me to buy) Mike’s Snake Oil even if it is a natural product? I am well aware that the law allows it, and it’s not likely to be changed anytime soon. Again, it’s a moral question I’m asking because you wrote that taking alternative therapies is an “absolute right.”
In support of off label prescribing
Allen, responding to your comments about “off label” prescribing: Sitemaster has already covered much of this ground, so I’ll just add a few points.
The first is my personal program. A substantial part of my program of intermittent ADT3 and supporting drugs was prescribed “off label”. That included adding a 5-alpha-reductase inhibitor drug — Proscar® and later Avodart® — to Lupron® and Casodex®. It also included adding a statin for protection against lethal prostate cancer, though I could have been on a statin for cholesterol. The biggest off-label move was taking low-dose thalidomide (with vitamin B6); I knew the risks, but also knew the benefit of gaining time for technology to give me a decent shot at a cure. To this day I have very mild peripheral neuropathy from taking thalidomide, but I am glad I did it; I gained key time that gave me my shot at curative radiation before ADT ceased to control the cancer.
The second point is that off label prescription is common. It’s even part of the standard of care in some circumstances.
A third point is that there is a safety record established in the FDA approval trials for drugs used off label. Doctors and patients should be aware that this is often in a specific population, and sometimes the risk/benefit balance is tilted a lot more toward risk in a use that is not covered by the FDA approval. Responsible doctors should assess this and all should be accountable. It helps if patients are empowered so they can judge this for themselves, with the aid of their doctors.
A fourth point is that research on a drug after approval often provides a lot of additional safety data. A good example is the old, tried and true drug Glucophage®, which we know now as metformin. As we all know, it is a rather hot prospect for benefiting prostate cancer patients, and there is an abundance of safety data and experience regarding that drug.
A fifth point is that clinical trials are highly expensive and the FDA approval process is time consuming, also sometimes adding substantial expense. It saves a lot of money and time if a drug is used off label for a sound purpose.
A final point is that expert doctors and researchers learn a lot more about drugs after they are approved. They can explore combinations, which I believe are rarely the subject of FDA approvals, different dosages, dosages with different timing and advice (like with meals or not), and so on.
I join you in your concern about supplements, but also understand a certain balance between regulation and freedom that is desired by Congress, representing the American people.
Sitemaster,
Video on Vitamin D3, interesting?
Some years ago I had a local patient contact me who, financially well off, had been traveling a wide range of “alternative” therapies in the opinion he would rather follow his own choices of treatment for cure than that being recommended by physicians.
With his PSA having elevated to over 5,000 ng/ml he finally realized he had made some very bad decisions and wanted my opinion as to what he should then do. I helped him with an appointment with my medical oncologist and with imaging it was determined his body was riddled with metastases. The med/onc immediately moved him to ADT and though this provided him a couple years of survival, it was too little too late, and, as expected, he died of his prostate cancer.
I always bring up this personal experience when people who have chosen “alternative” therapies ask my opinion about them. He wasn’t the only one and several others who contacted me had traveled to hyped treatment locations wherein those “alternative” therapies had failed despite the high expenses those patients had shelled out.
“Buyer Beware” doesn’t begin to explain what those who choose alternative therapies expecting cure will experience in loss of finances as well as eventual early demise.
Dear Allen:
What I actually wrote was that “every patient has an absolute right to make his or her decision about how he or she wants to be treated” in the context of an article about “alternative treatment” for cancer (not in the context of any form of possible treatment for anything).
If you want me to modify that to read as
“every patient has an absolute right to make his or her decision about how he or she wants to be treated so long as it is a form of treatment that is legally available in the country where that patient lives or he or she can obtain that drug legally in some other way”
I have no problem with that because that was clearly my intent.
I was not making a “moral” point at all. I was making a point about the right to be wrong. I believe that I and you and everyone else has the right to be stupid and the right to make bad decisions (so long as they are our own and are not directly affecting others). This issue has nothing whatsoever to do with the FDA, which is not making judgements about what an individual patient should or shouldn’t do. It makes judgements about what should be available in the US for diagnostic and therapeutic use, on or off label and by prescription or over the counter. I also support freedom of speech but not the freedom to deliberately use speech to hurt others. There are all sort of laws about all these things — some of which are good, some of which are bad, and some of which are just misguided. You cannot isolate this as a “moral” or “ethical” issue.
Also, you cannot reasonably characterize the fact that you cannot get a prescription for Vioxx in this country as a “moral” issue. That’s ridiculous. You can’t buy cocaine for therapeutic use over the counter in a pharmacy either, are you implying that I was suggesting you should be able to do that?
Dear JJ:
If you click here you will find the published results of the (small) clinical trial Dr. Hollis refers to in this video.
24/44 subjects (55%) showed a decrease in the number of positive cores or decrease in Gleason score; 5/44 subjects (11%) showed no change; 15/44 subjects (34%) showed an increase in the number of positive cores or Gleason score.
I would point out that this was not a randomized clinical trial.
So my answer to your question is “No”, not really of any great interest.
JJ:
You may be interested in this article about how people like you have been duped about Vitamin D.
You may also be interested in the following randomized clinical trial that did indeed prove that vitamin D supplementation had no effect on the incidence of prostate cancer,
I wish I had something constructive to add but can only say that two Dutch women I knew died from alternative cancer treatments. In the sense that the treatments delayed their accepting normal care until it was too late. One was in thrall to her partner who convinced her to take a wacko cure.
My idea has long been that many fans of this stuff are too afraid of pain and have strongly internalised weird beliefs. How anyone can hold that “chemo kills” with no investigation, is beyond me.