The quack view of preventing cancer versus reality and Angelina Jolie, part 3

I happen to be in Houston right now attending the Society of Surgical Oncology annual meeting. Sadly, I'm only about 12 miles away from the lair of everybody's favorite faux clinical researcher and purveyor of a cancer cure that isn't, Stanislaw Burzynski. Such is life. In any case, this conference is all about cancer and how we treat it surgically. That includes prophylactic surgery designed to prevent cancer in people at very high risk. Prophylactic surgery to prevent cancer is never a decision that should be undertaken lightly and almost never is, rants from quacks notwithstanding that make surgeons sound as though they're chomping at the bit to remove random body parts in a fruitless attempt to prevent cancer.

Certainly that happened a couple of years ago when actress Angelina Jolie announced in a New York Times opinion piece that she had undergone bilateral prophylactic mastectomies (removal of both breasts) with reconstruction because she carries a mutation in the BRCA1 gene that puts her at a very high lifetime risk of breast cancer. The quacks were not pleased, not at all. For example, Mike Adams, ever the restrained one, declared Angelina Jolie inspires women to maim themselves by celebrating medically perverted double mastectomies. Hilariously, there is now a message there about how this article has been removed because it is no longer aligned with the science-based investigative mission of Natural News" and that Mikey "transitioned from outspoken activist to environmental scientist." You can still find generous samples of Mike's rant in my discussion of it. A followup article, How Angelina Jolie was duped by cancer doctors into self mutilation for breast cancer she never had, also disappeared. Again, you can see the crazy for yourself in my discussion of this despicable article, in which Adams claimed Jolie could have reduced her risk of cancer to very low levels with "natural" methods, an utterly ridiculous claim for a woman with a BRCA1 mutation.

Of course, BRCA1 mutations that cause breast cancer also cause ovarian cancer. Two years ago, the question remained what Angelina Jolie would do with her ovaries, and this week she answered that question with an other editorial in the New York Times entitled Diary of a Surgery. Mike Adams has shown unusual restraint (or he's just behind on his rants) in that there is as yet no article castigating surgeons and Jolie once again for removing healthy body parts for no apparent reason. Maybe Mikey really has become an "environmentalist. (Naaah. Just take a look at his front page if you don't believe me.) In any case, in her article, Jolie announces:

TWO years ago I wrote about my choice to have a preventive double mastectomy. A simple blood test had revealed that I carried a mutation in the BRCA1 gene. It gave me an estimated 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer. I lost my mother, grandmother and aunt to cancer.

I wanted other women at risk to know about the options. I promised to follow up with any information that could be useful, including about my next preventive surgery, the removal of my ovaries and fallopian tubes.

Ovarian cancer is nasty. The main reason it's nasty is that it's rarely caught when it's confined to just the ovary, because the symptoms of early ovarian cancer tend to be vague and nonspecific abdominal or pelvic complaints. Usually, it has started to spread throughout the abdomen before it is discovered, and by then the surgery needed to control it becomes much more extensive, and the chemotherapy needed to mop up the leftover tumor deposits after surgery becomes more grueling. Corresponding with this, the chances of curing it go down considerably.

Now, as I discussed before, the BRCA1 mutation Jolie had produces a 87% lifetime risk of breast cancer. Even so, some women choose close screening and then surgery only if and when the cancer develops. This is possible for breast cancer, thanks to mammography, although there is always the chance of false negatives. For ovarian cancer, such a strategy is more risky because there is no screening test even as good as mammography, even with all its flaws. In Jolie's case, even though her CA-125 level was normal, apparently other inflammatory markers were elevated, which might be a sign of early ovarian cancer. This, according to Jolie, is what finally pushed her to make the decision to have her ovaries removed, even though she underwent a battery of imaging tests, including a combined PET and CT scan, that were negative.

Now here's the part that bothers me. We know from her last surgery that Jolie is into a fair amount of woo. Her surgeon, after all, used a homeopathic concoction claimed to improve wound healing and had her surgery done at the Pink Lotus Breast Center, which, as I noted before, is highly into "holistic" bunkum. In her latest editorial, Jolie pulls the same thing:

I did not do this solely because I carry the BRCA1 gene mutation, and I want other women to hear this. A positive BRCA test does not mean a leap to surgery. I have spoken to many doctors, surgeons and naturopaths. There are other options. Some women take birth control pills or rely on alternative medicines combined with frequent checks. There is more than one way to deal with any health issue. The most important thing is to learn about the options and choose what is right for you personally.

In my case, the Eastern and Western doctors I met agreed that surgery to remove my tubes and ovaries was the best option, because on top of the BRCA gene, three women in my family have died from cancer. My doctors indicated I should have preventive surgery about a decade before the earliest onset of cancer in my female relatives. My mother’s ovarian cancer was diagnosed when she was 49. I’m 39.

Ack! There's the fallacy of "Eastern" versus "Western" medicine again! How many times do I have to point out that that is a rather racist construct, in which the "East" is implied to be more "holistic" and woo-ey, while the "West" is cold, reductionist and scientific. Medicine is medicine. The only thing that matters is the evidence supporting it. Still, at least Jolie in the end made a medically reasonable and justifiable choice to have her ovaries removed in order to prevent ovarian cancer down the road.

Not surprisingly, quacks aren't happy about this article, either. Even though Mike Adams' "voice" (such as it is) is absent—normally, I'd have expected him to have an article out no later than yesterday, given that Jolie's article appeared in the NYT two days ago—Sayer Ji was ready to jump right into the fray ignorantly. What he lacks in Adams' penchant for histrionics, he makes up for in verbal prestidigitation that ignores medical knowledge. He also was fast out of the gate, throwing together this article the same day Jolie's article appeared, entitling it Beware of Organ Removal for "Cancer Prevention": Jolie's Precautionary Tale. The misinformation begins early and comes fast and furious:

With Angelina Jolie's recent announcement that she had her ovaries and fallopian tubes removed because of both a BRCA 'gene defect' and a history of breast and ovarian cancer in her family, the idea that genes play a dominant role in determining biological destiny and cancer risk is proliferating in the mainstream media and popular consciousness uncontrollably like a cancer.

This is what I like to refer to as genetics denialism, something very common among quacks like Sayer Ji. The idea is that you can control your health, so much so that genes don't matter, at least not that much. EExamples abound, with Deepak Chopra attacking genetic "determinism" and Mike Adams claiming that human DNA is incapable of storing the complete blueprint of the human form and referring to genetics as a "big lie." Others invoke the new science of epigenetics as meaning that, in essence, thinking makes it so and you can change your health just by wanting to badly enough. I hear it again and again and again. Never mind that pesky BRCA1 mutation. Sayer Ji tells you you have nothing to worry about:

The reality is that the average woman's lifetime risk of ovarian cancer is exceedingly small, with the overall risk of developing ovarian cancer by 65 years of age being 0.8 percent and the lifetime risk 1.8 percent.[2] For those with a first-degree relative developing ovarian cancer, as is the case for Jolie, the risk estimates show increases to 4.4 and 9.4 percent, respectively.[3]

It is also important to realize that lifetime ovarian cancer risk does not exist in a vacuum. Considering that it is not cancer (at any site) but heart disease that is the #1 killer of women, focusing on ovarian cancer risk as the primary threat to health is myopic at best, faulty reasoning with deadly consequences at worse. If Jolie had chose to go without radical surgical intervention, it is statistically more likely she would have died from heart-related death than cancer of any kind. The reality is that the lifetime risk of heart disease related death in women is in top position at 23.5%, according to CDC statistics, versus cancer which takes #2 position at 22.1%. And within cancer related deaths in women, breast, lung, colorectal cancer, uterine, thyroid, non-Hodgkin's lymphoma and melanomas are top on the list, with ovarian cancer in the 8th in position.

Can anyone spot the fallacies here? These are numbers for women who don't have a documented BRCA1 mutation!!! They are irrelevant to Jolie's situation, where she has a mutation that's been shown to result in a 50% lifetime risk of developing ovarian cancer. The study cited was a case control study that only examined the three known major risk factors by history: a history of ovarian cancer in the mother or sister, years of oral contraceptive (OC) use, and number of term pregnancies. That's it. It didn't even look at the known BRCA1 mutation that Jolie had.

Next up, Ji goes on to discuss overdiagnosis of ovarian cancer resulting from ultrasound screening. Yes, as I've pointed out, any time you screen for a disease, you will diagnose more cases and some of those cases will be overdiagnosed; i.e., disease that would never progress within the lifetime of the patient to cause serious health problems. He even invokes the case of ductal carcinoma in situ (DCIS), a premalignant condition of the breast whose prevalence has skyrocketed with the advent of mammographic screening. Here's the thing. The frequency of overdiagnosis is related to chance of disease in the population being screened. The lower the chance of disease, the greater the chance that a positive screening test results in overdiagnosis. That's why we don't screen women under 40 for breast cancer; the expected prevalence of disease is too low. Indeed, as I've discussed many times, even age 40 might be too young, hence all the controversy over the USPSTF recommendations five years ago.

Can you see where I'm leading? With Jolie's expected lifetime risk of ovarian cancer being 50%, Ji's discussion of this, too, is irrelevant to her case.

Ji concludes by cherry picking evidence suggesting that BRCA1-associated ovarian cancers might be less aggressive. Actually, not quite. One study Ji cites found that it's likely a better response to platinum-based chemotherapy in BRCA1-associated cancers that results in better outcomes. Indeed, a recent meta-analysis suggests that BRCA1 carriers who develop ovarian cancer do indeed have higher OS, but that such women who develop breast cancer have a worse survival (which has been known). My answer? So what? They still develop a cancer that has an unfortunately high probability of killing them! Yes, the ovarian cancers they develop might be less deadly than ovarian cancer that just "pops up," but it's still deadly! Holy hell, Ji pisses me off with this line of "reasoning," if you can call it that. Ditto here:

The concept – the meme – that hereditary determines one's biological destiny is archaic. After the first draft of the human genome project was completed in 2005, they only found 23,000 genes! That's not enough protein-coding genes to explain the existence of our body, which contains at least 100,000 different proteins. What this epic failure revealed is that it is not the genes themselves that determine health or disease, rather, what factors in our environment, lifestyle and nutrition that activate the expression of certain genes, and silence the expression of others. In the case of BRCA1 and BRCA2, we now know that silencing these genes from the 'outside in' results in the same result as being born with a defective gene from the 'inside out,' with the important difference that epigenetic – 'outside in' – gene silencing can actually be reversed or mitigated. Our genome results from millions of years of evolution, whereas our epigenome is influenced by day to day decisions, many of which depend on what we decide to eat or avoid eating, right now. Choice, therefore, becomes central to determining disease risk. And given that Jolie's decision to remove her breasts, and subsequently her ovaries, was predicated on a belief that she is helpless in the face of predetermined risk – her decision does not reflect the evidence and biological science itself.

How do we end up living in a world where people believe that their genes – which they do not have access to without biomedical surveillance -- determine their destiny? How we end up thinking that 'gene defects' are so powerful that removing healthy organs from our body is the only reasonable way to prevent experiencing cancer within them?

If we take this logic to its fullest expression, why wouldn't someone determined to have a greatly increased risk of brain cancer remove their head prophylactically?

The stupid, it burns.

Yes, depending on the disease, it is a mixture of environment and genes that determine what happens. However, that ratio is not the same for every disease. There's also the concept called penetrance, which describes how likely a person harboring a certain allele or mutation is to demonstrate the phenotype associated with that allele. 100% means everyone with that mutation gets the phenotype. 50% means half do, like Angelina Jolie's BRCA1 mutation and ovarian cancer. It's not 100% or none; penetrance is a spectrum. In the case of BRCA1 mutations, genetics does rule, by and large. For breast cancer, depending on the specific BRCA1 mutation, the lifetime risk of cancer can be as high as 90%. The same is true for a number of mutations that vastly increase the risk of colorectal cancer to the point where the vast majority of carriers develop colorectal cancer before middle age. Ji's apparent belief that genetics doesn't matter and "choice" is all is nothing more than what I've called The Secret of epigenetics, in which wishing makes it so and we can completely control our health, genetics be damned. If only that were true. It's not.

By promoting such flagrant misinformation, Sayer Ji endangers the lives of women with BRCA mutations everywhere.

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I could go on and on about this topic. The most important point that I want to make is that it looks like there may be no such thing as ovarian cancer.

First, the serous carcinomas, high and low grade (in the context of BRCA mutations, we are talking about high grade serous carcinomas), probably arise in the Fallopian tubes. We learned this from the BRCA mutation carriers. We can find in situ serous carcinomas in the tubes in the prophylactic resections. In women, both with and without germ line mutations, we can find millimeter scale primaries in the Fallopian tubes in women with bulky disease in the ovaries and elsewhere in the abdomen. The Brigham & Wimen's group is accumulating a large series of these cases, and the rest of us are waiting for them to publish it, but, in my opinion, the evidence is quite good. This also explains our inability to develop an effective screening test for this disease. By the time there is something large enough for us to detect, the cat is out of the proverbial bag.

The other cancers that have been referred to as ovarian cancers, the endometrioid and clear cell carcinomas, probably arise in endometriosis, and thus the endometrium, not the ovaries. This will leave the germ cell tumors and the stromal tumors as the only true ovarian tumors.

Of course, there is a way for 23,000 genes to produce 100,000 proteins. It is called alternative splicing. I don't know off hand, though, if 100,000 different proteins is accurate. 23,000 genes sounds about right.

By Michael Finfer, MD (not verified) on 26 Mar 2015 #permalink

Oh, I'm aware of this issue but considered it outside the scope of my post. I am, however, surprised Ji didn't really get into this controversy and instead focused on overdiagnosis, which isn't a problem in ovarian cancer. The problem in ovarian cancer is underdiagnosis and delayed diagnosis.

With regard to the role of genes in determining biological destiny; it is probably fair to say that many people are not familiar with the concept of penetrance, including perhaps Mr. Ji.

What I find interesting is how the woos are all about individual freedom and the liberty to decide what to do with your own body . . . as long as they're choosing something the woos approve of. If anything, I find woos are considerably *less* in favor of patient autonomy than mainstream physicians are.

But we all are well acquainted with that phenomenon here, along with the clear evidence that they feel free speech means not having to hear any criticism.

By Calli Arcale (not verified) on 26 Mar 2015 #permalink

Have you seen this?
Patriciadaly.com

It's getting harder and harder to stop the tidal wave. The internet has become such a powerful tool in disseminating information.
This allows each & every person to make the best decision for their treatment.
People are truly waking up. And no longer following blindly the oncologist's suggested treatment which only includes pumping the body with pure poison.
No wonder people have wised up!!
The treatment kills the patient, not the disease.... so true.

I am not sure I would consider this a controversy. Our methods for examining prophylactic BSO's and resections for clinically apparent malignancies are now based upon the assumption that the primary tumors are in the Fallopian tubes, and the College of American Pathologists practice guidelines now state that if any tumor is found in the tubes, the entire case should be classified as a tubal primary regardless of the distribution of disease. This is a significant departure from past practices.

One interesting thing is that we have apparently been getting this wrong for over a century in part because of the way we used to examine the tubes. It used to be, when faced with an apparent ovarian tumor, we would take random cross sections from somewhere in the middle of the tubes for "documentation," but the vast majority of the in situ carcinomas occur in the fimbria, the finger like projections that surround the ovaries and help guide the ova into the tubes.

Like the old joke, the abbreviation for "within normal limits" is WNL. It also means "we never looked."

By Michael Finfer, MD (not verified) on 26 Mar 2015 #permalink

Sayer Ji has certainly become prominent on the natural health front for these past several years but I knew very little about him ( other than reading his material or hearing him) so I decided to quickly gather some information about him from his own sources...( noted)

- he's a board member of the National Health Foundation.
- he's written for Mercola and Truth Out as well as founding Green Med Info in 2008
- he received a BA in Philosophy for Rutgers University in 1995 ( he links to his so- called thesis- actually a paper from an independent study course. Merleau-Ponty is mentioned/ written as "D. Sayer Ji))
- he studied at the Zen Mountain Monastery ( New York state) for a year
- he is a teacher, counsellor, 'wilderness therapy specialist", patient advocate and natural product consultant
( from Sayer Ji.com)
- resides in Naples, Florida and has over 500 connections
( from Linked In)
- he's a " Strategic Partner and dad of two",
runs "one of the top five Alexa ranked natural health sites"
he also is involved with Global GMO Free Whatever and presents at gluten-free events as well.
( from Fearless Parent.com website/ PRN radio show)
- he'll be a keynote at Autism One 2015 with other fearless parents, Habakus, Brogan and Palevsky. ( Autism One)

That sounds like quite a resume for a quack:
notice the obvious but rather non-specific padding and lack of any health or.medical studies- including those which might originate from woo-centric institutions of higher pretense
I though that at east he had a nuttitionist certificate or mail order doctorate in public health scamming.

So what gives him the ability to criticise medical decisions like this?

By Denice Walter (not verified) on 26 Mar 2015 #permalink

Orac, I think you and the other boys at the Society of Surgical Oncology conference should put together a good ole Texas posse and head over to that quack's "clinc" for some serious old time vigilance activity. Then head out for Florida. :)

Thanks for this treatment. It is a pity that the discussion is not focused on risks vs benefts of prophylactic mastectomy vs surveillance...I know women who were kind of upset at the media coverage of Ms Jolie's double mastectomy because they felt it would fuel cancer fear and potentially lead to women who did not have the mutation undergoing this rather drastic procedure. And it wasn't immmediately apparent she had the BRCA1 oncogene mutation.

By Chet Morrison (not verified) on 26 Mar 2015 #permalink

Oh, and one other point - a philosophical one - I would make about this epigenetic bullshit: It allows the practitioners to conveniently deflect blame to the victim (er, non-believer) who, when suffering from the cancer that her genes makes her more suscpetible to, can be stated to have not believed fervently enough or whatever, not calling the teopry itself into question. In this, it resembles Freudianism in that it has a abilit to stubbornly accomodate itself to inconvenient facts, but also then fails a basic test as to the rigor of a scientific theory, namely its falsifiability.
Kinda like Gerson 'therapy'....

By Chet Morrison (not verified) on 26 Mar 2015 #permalink

That should be:
at LEAST and NUTRITIONIST

By Denice Walter (not verified) on 26 Mar 2015 #permalink

Sayer Ji claims:

In the case of BRCA1 and BRCA2, we now know that silencing these genes from the ‘outside in’ results in the same result as being born with a defective gene from the ‘inside out,’ with the important difference that epigenetic – ‘outside in’ – gene silencing can actually be reversed or mitigated.

As I have observed here before, gene silencing isn't the problem here. BRCA genes produce tumor suppressing proteins that work as part of a DNA repairing mechanism. If they are mutated, DNA damage will no longer be repaired effectively. No amount of visualization, weird diets, homeopathy or whatever, even if they do have epigenetic effects and up-regulate these genes (which I doubt), is going to magically repair them and restore the DNA repair mechanism.

By Krebiozen (not verified) on 26 Mar 2015 #permalink

Did anyone else catch that non sequitur about heart disease being a greater killer of women than cancer? Taking care of one risk does not preclude taking care of another risk.

It's like saying that a soldier in a war zone should be more concerned about enemy snipers than they should be about the civilian driving a car down the road right at them. It's like Ji would think the soldier stupid for moving out of the way of the car.

Ruth @#5.

Seriously? Seriously???

If its the treatment that kills rather than the disease, then what is your solution? Do nothing? Drink 'green smoothies' and take coffee enemas? Meditation? So - do nothing again? All the while the tumors and satellite tumors continue to grow inside you...

Truly Ruth, has the horrific end that came to 'Wellness Warrior' shown you absolutely nothing???

I am flabbergasted that a post like yours can come so soon after that miserable - in the genuine meaning of the word - debacle.

By Gemman Aster (not verified) on 26 Mar 2015 #permalink

Ruth @#5

"The treatment kills the patient, not the disease…. so true."

The arrogance and ignorance of that statement is truly gobsmacking. I have no words.

By Selena Wolf (not verified) on 26 Mar 2015 #permalink

My wife never took the BRCA test. That said, her mother, biological grandmother and two aunts developed BC. I think that's a trend. Genes.

We discussed over the years whether or not to have the bilateral prophylactic mastectomy. I wish we had elected that coarse of action. Upon diagnosis, she unhesitatingly chose bilateral mastectomy but it was too late.

I wish airheads like Ji would shut their piehole.

Dr. Finfer said: " the College of American Pathologists practice guidelines now state that if any tumor is found in the tubes, the entire case should be classified as a tubal primary regardless of the distribution of disease."

Michael, can you supply me with a source for this statement?

By Dangerous Bacon (not verified) on 26 Mar 2015 #permalink

Let us not forget one endearing aspect of Sayer Ji- he loves to try to silence his critics with threats of lawsuits. Orac blogged about that one year ago and I know that he has threatened others who criticize him.

http://scienceblogs.com/insolence/2014/04/02/i-do-not-think-that-study-…

On the one hand, he claims to stand up for health "freedom." On the other hand, he tries to silence his critics with threats.
Typical. His website Greenmedinfo does have a nice supplement store though!

Dangerous Bacon:

There is a long discussion of this issue on page 8 of this document:

http://www.cap.org/apps/docs/committees/cancer/cancer_protocols/2013/Fa…

I find that I misstated myself earlier. The entire case is classified as a tubal carcinoma if in situ carcinoma is found in the tubes regardless of the distribution of disease.

For my part, in these cases, if I cannot document in situ carcinoma in the tubes, there are three possibilities: it is either very small, and it eluded sampling, the tube has been completely destroyed (very common), or it is not there. I will then send a report stating the tumor type without explicitly stating the site of origin because I do not believe it is possible to exclude a tubal origin. Because of the way we have to work, we never look at all of the tissue, even when we process all of it for microscopic examination. That could take hundreds or thousands of slides, step sectioning through all of the blocks. We cannot do that because it would exceed the capacity of every laboratory and make it impossible to deal with the potentially dozens of other patients who need our services that day. We just do the best we can. Ultimately, I suppose, it is just an academic issue because the treatment is not changed. I just find long discussions of this issue without an acknowledgement of where these tumors really seem to be coming from to be annoying.

By Michael Finfer, MD (not verified) on 26 Mar 2015 #permalink

Typical. His website Greenmedinfo does have a nice supplement store though!

Surely it is the other way around; his supplement business is promoted through a website about the evils of any non-supplement medicine.

By herr doktor bimler (not verified) on 26 Mar 2015 #permalink

Michael: As I read the linked CAP document on classification of serous carcinoma (I commonly use this and similar templates in my pathology practice), it seems to be saying that cases of diffuse pelvic peritoneal serous carcinoma should be regarded as tubal in origin if there is any in situ carcinoma detected in the fallopian tubes. However, this statement seems to conflict with what a separate CAP cancer protocol says about primary peritoneal carcinomas and how to differentiate between them and primary ovarian carcinomas which also involve the peritoneum (no mention is made of tubal findings). And what of serous carcinomas extensively involving the ovary with (apparent) secondary or simultaneous involvement of the peritoneum and/or tubes? This area is confusing and diagnostic criteria at this juncture appear somewhat arbitrary. In the end it doesn't seem to matter that much from a treatment standpoint just where the original tumor got started.

Sorry for this digression into pathologist angst. Daily practice can be annoying enough without also having to deal with self-serving academic pathologists taking a crap on community pathologists over differences in diagnosing atypical hyperplasia and DCIS of the breast (i.e. via the paper that got considerable publicity this past week).*

*I would love to see and Oracian post on this subject. For one thing, we could discuss "expert" pathologist diagnoses of borderline lesions and the absence of any outside review of those "expert" diagnoses. ;)

By Dangerous Bacon (not verified) on 26 Mar 2015 #permalink

DW

So what gives him the ability to criticise medical decisions like this?

A keyboard.

By Militant Agnostic (not verified) on 26 Mar 2015 #permalink

Ruth@5:

The treatment kills the patient, not the disease…. so true.

Ah, this must be the reason I buried my old dad a decade ago after the oncologist treated him for cancer.

Oh wait, no, the treatment worked and he's been clear of cancer ever since. Hmm, guess I should go dig him out again. Anyone got a shovel?

Wonder if VZV put her down the pathway?

After the first draft of the human genome project was completed in 2005, they only found 23,000 genes! That’s not enough protein-coding genes to explain the existence of our body, which contains at least 100,000 different proteins.

And Sayer Ji fails the internet.

@ Yvette:

BUT there is SO much more there than a supplement store!

He sells e-books, e-courses, a "professional membership" that gives access to arcane information, grounding sandals , protein powders, enema supplies/ coffee, emotional and spiritual supplements ( some contain monatomic gold), neti pots, mud ( for skin care), salt, videos, self-care instruction...

Why consult medical care when his products address ills both physical and emotional? Kelly Brogan provides insight and Judy Mikovits lends her wisdom towards research.

In addition, he advocates drumming as a health alternative and includes videos of his own masterful work.

By Denice Walter (not verified) on 26 Mar 2015 #permalink

The really sad thing is to read the comments on Ji's site. Most of them are simply a negative attack of Jolie. No science involved, just hatred.

As a female (and an epi) I worry way more about ovarian cancer than breast cancer. Thankfully, none of my female relatives have succumbed to either. But in an anecdote, a female friend of mine (only a few years older so late 30s) had persistent back pain for about 6 months. She did PT and other stuff but finally had a CT done because the pain wouldn't go away. They detected a mass in her abdomen and said it could possibly be ovarian cancer. We met for lunch and she wondered how she could explain it to her mother (if it was confirmed to be ovarian cancer) because we both knew her prognosis would be very poor. It ended up being benign tumors in her uterus and bladder. But ovarian cancer is seriously scary as far as prognosis goes. I don't agree with Angelina's use of the woo, but in this case her use of preventive surgery seems way more than justified.

We have a group of tumors (or one tumor) that are morphologically and genetically similar. We can find a precursor lesion in the Fallopian tubes in many but not all cases. Often the bulk of the disease is in the ovaries, and occasionally it is on the pelvic peritoneum.

My bias, as it were, would be to apply Occam's razor. Are we going to suppose that there are different cell types, tubal epithelium, ovarian surface epithelium, and the pelvic mesothelium, that all give rise to this tumor group? Or, instead, perhaps they all arise, as has been suggested, from tubal epithelium? I would gravitate towards the latter because it is the simplest explanation. After all, we can see tubal epithelium in places other than the Fallopian tubes (endosalpingiosis), and presumably, tubal epithelium can become entrapped in the ovary during ovulation. Personally, I think that the idea that all serous carcinomas originate in the Fallopian tubes is the best of the available explanations.

I think that part of the problem is that, for some reason, once these cells get into the ovary and, sometimes, the pelvic peritoneum, they acquire a marked growth advantage over the tumor that is left behind in the Fallopian tubes, either obliterating it, or making it so hard to identify the tube that we cannot find it, or because it is so small that it is difficult to find. I think that the hemming and hawing that you see in documents like this are the result of the nature of both these tumors and these specimens.

I think when that large series that I mentioned earlier finally gets published, we may have a much better idea of what is really going on.

I think everyone else here might have had enough of our conversation!

By Michael Finfer, MD (not verified) on 26 Mar 2015 #permalink

The important point for Jolie is that the relevant parts of the fallopian tubes are not inside her any more playing molecular Russian Roulette.

By herr doktor bimler (not verified) on 26 Mar 2015 #permalink

Todd @13: I like your analogy about the heart disease non sequitur. Another thing: I can live without my breasts. I can live without my ovaries. I can't live without my heart. Even if I had a 100% chance of developing heart disease, prophylactic removal of my heart is not an option.*

*Unless, of course, my epigenome is SO MEGA-POWERFUL that I can will my circulatory system to keep working.

Judy Mikovits lends her wisdom towards research.

I was going to say that I hoped you would spare me the pain of actually listening to (or watching, if they tape it) the upcoming event that led to Heckenlively's utterly deranged spasm of self-congratulation, but alas, it's been postponed.

he studied at the Zen Mountain Monastery ( New York state) for a year

What is Sayer Ji trying to do with this? Prove his "spiritual" bona fides or something? I am rather annoyed that someone who demonstrably got so little out of his year at ZMM sees fit to wave it about as if it "qualifies" him to hold forth about the evils of modern medicine. All he's doing is besmirching the reputation a perfectly good monastery and the memory of John Daido Loori, who I'm sure would also be annoyed with Sayer Ji's general nonsense, given that he worked as a chemist for a couple decades.

I listened to the Fearless Parent Radio interview Ji conducted with Judy Mikovits. While he may not think our boring old human DNA has much to do with health he seems to be rather terrified about the sea of mouse DNA we are all swimming in.

You see Narad, I try to provide information whilst scoffing so I needed to note that Mikovits is a new addition there.

So it's postponed? And who amongst Orac's minions is responsible for that?

JP unfortunately worthy institutions may produce or be affiliated with crappy folk.

By Denice Walter (not verified) on 26 Mar 2015 #permalink

So, we now know that Sayer Ji doesn't understand the concepts of "greater than" and "less than." He claims that 23,000 genes aren't enough to code for all our proteins (false, but let's leave it for the moment). Then he argues that that's okay, because the environment silences some of those genes.

Because of course if 23,000 is too few, some lesser number (15,000? 22,809? 17?) is sufficient.

I think we also need an explanation for the differences between me, a squirrel, and a maple tree, given that I have shared my environment with both other kinds of organism. Which 77,000 environmentally-caused proteins should I expect to find in the maple, the squirrel, and random ants and funti?

JP unfortunately worthy institutions may produce or be affiliated with crappy folk.

Of course, but I still find it annoying; it's like he's trying to pawn himself off as an "enlightened master" or something, which is pretty f*cking funny.

It's also weird that he lists it under "education." I mean, if I spent long enough in a Zen monastery, I might conceivably put it on my CV to explain the gap, but that would also necessitate explaining to a potential employer that I saw fit to spend a number of years staring at the wall.

(Well, Zen places do attract some flakes, I suppose - I've seen it first hand. There was a woman back at Dharma Rain in Portland who did reiki for a living. I also recall her griping at some point about the practice of putting peanut butter on the oatmeal. She thought it would be nicer, or healthier or whatever, to top it with almond and "fresh raisins.")

This blog, while interesting, gets almost no traffic. What's the deal? Is ORAC not compelling to folks? I find the analysis certainly relevant. Anyone have answers here as to why sites like Mercola.com and Naturalnews.com get 1,000 times more traffic?

By James Henrick (not verified) on 26 Mar 2015 #permalink

I suppose those blogs get more traffic because they say what people want to believe in pleasantly vague ways. People want easy platitudes and miracle cures. Orac isn't like that. He deals in truths, some hard truths, and does his best to explain scientific realities to explore just why these folks are wrong. These folks, on the other hand, just say Orac and his ilk are pharma shills and move on. It's easy and popular to believe The Man is out to get us. Not so.much, to try to understand the complicated reality of medicine.

I have to say, though, I adore Orac's blog and read it daily. He's insightful and interesting; he makes even the drier science talk relatable. I really feel I learn from reading this blog, and of course, I enjoy the insolence.

By Kourohsgirl (not verified) on 26 Mar 2015 #permalink

@James - because people are gullible & stupid?

Ah... New fields of science giving opportunities for quack to babble non sense... We got the 'quantic trend' now let's add some 'epigenetic powder", of course they have no clue about what is epigenetic.

"In the case of BRCA1 and BRCA2, we now know that silencing these genes from the ‘outside in’ results in the same result as being born with a defective gene from the ‘inside out,’ with the important difference that epigenetic – ‘outside in’ – gene silencing can actually be reversed or mitigated. "

Lol, not even close.

The man never head that gene may not have the same function during embryo growth ? So, defect of a gene at birth could do one thing and silencing (+ maybe targeting on one specific organ) at adult state is a totally different thing. Any biologist know this.

Anyone have answers here as to why sites like Mercola.com and Naturalnews.com get 1,000 times more traffic?

Well, Mike Adams and Joe Mercola are masters of marketing - they're selling a worldview along with their supplements and other junk, and they're very good at it. They tell people what they want to hear, flatter the reader in various ways, etc.

Plus this blog sometimes uses big words which are hard to pronounce.

This blog, while interesting, gets almost no traffic.... Anyone have answers here as to why sites like Mercola.com and Naturalnews.com get 1,000 times more traffic?

What exactly are you using as the basis for the assertion?

The 730,000 unique visits in February would refute James' claim. True, that was an all-time record, a spike created by my post about Jess Ainscough, but in general the blog averages 300,000 to 400,000. That's not too shabby by any stretch of the imagination. Even the most inflated claims of Joe Mercola and Mike Adams for their traffic would be less than ten-fold higher. So where James got the figure of 1,000-fold more traffic to these quacks.

"Anyone have answers here as to why sites like Mercola.com and Naturalnews.com get 1,000 times more traffic?"

In addition to Orac giving us more realistic numbers there is also something that people heavily into marketing do with their blogs and social media.

They purchase clicks and likes. There are services that run bots that will drive up your numbers so you tend to be more likely to show up enough to get real people to click and like. What I don't know is how many of those paying tend to be people trying to get some attention for the first time vs those who are already established but want to pad their numbers so they seem more popular than their competitors.

I wonder how much Adams and Mercola spend on publicizing their misinformation.

By Krebiozen (not verified) on 27 Mar 2015 #permalink

Someone should tell Sayer Ji about Huntington's disease. One gene, fully penetrant. Perhaps he can tell these unfortunate carriers of this gene they can be cured if they lead a pure enough lifesyle.

Posted this in the wrong thread,but never mind.This site needs a "detete post" function.

By Roger Kulp (not verified) on 27 Mar 2015 #permalink

@ Michael Finfer, MD

I think everyone else here might have had enough of our conversation!

Speaking only for myself, but I did like to read the back-and-forth comments between you, our host and DB. It was providing interesting insight into the complexity of oncologists' job.

By Helianthus (not verified) on 27 Mar 2015 #permalink

@Denice Walter

"nuttitionist certificate" I don't know about your 'correction'; I rather like this term.

By jrkrideau (not verified) on 27 Mar 2015 #permalink

When I read Sayer Ji's latest dreck, I was wondering what his education and credentials are. Thanks to Denice Walter for providing the information. Ji is eminently qualified to be a presenter at the Autism One conference.

BTW, *PBS will be televising the first segment of Ken Burns documentary (Cancer: The Emperor of All Maladies), Monday, April 1, 2015:

http://cancerfilms.org/

* PBS doesn't cough up any $ for Big Pharma Shills//sigh.

While I disdain quackery just like anyone here, I am surprised to find that the issues raised in his blog are supported by evidence, namely:

Buys SS, Partridge E, Black A, et al. Effect of screening on ovarian cancer mortality. The Prostate, Lung, Colorectal and Ovarian (PLCO) cancer screening randomized controlled trial. JAMA 2011;305:2295–2303.

When he writes: "The real tragedy – largely still unacknowledged – is that ovarian cancer statistics are not transparent to the fact that five times more women without ovarian cancer end up having surgery than those with ovarian cancer, according to a 2011 JAMA retrospective study of ovarian cancer screening.[2]" is this untrue? I am having a hard time debunking this. ORAC, please help.

This is where the stats are coming from: http://www.alexa.com/siteinfo/http%3A%2F%2Fscienceblogs.com The global rank for the entire Scienceblog is only 18,000, whereas sites like Mercola.com are top 2,400 in the world. I don't know what kind of traffic ORAC's excellent blog gets, but if the entire platform is only getting 1/6th Mercola's then I can imagine it is maybe 100 times less -- not the 1,000 that I first estimated. Why are the quacks so dominant!???

By James Henrick (not verified) on 27 Mar 2015 #permalink

Although I am not a BRCA mutation carrier, I am so grateful that Ms. Jolie and women in her situation have these sorts of options. As someone who monitors oncology clinical trials (and ovarian cancer is one of the indications I work in), I was never so terrified when, 20 minutes after I had a CT scan due to persistent abdominal pain, my MD called me to say these words: "You have a 10 cm mass in your pelvis that is suspicious for ovarian cancer." It turned out to be a germ cell tumor and, after surgery and 4 months of chemo therapy, I was fine. That was four years ago this coming June.

Yvette: I think the health nuts shouldn't be discussing complex genetic/epigenetic issues, but I do not believe you can say there is any congenital disease where genes have "full penetrance," to the exclusion of factors beyond the control of the primary sequences in the DNA.

For example, if Huntington's disease is a "full penetrance" disease, why are there epigenetic/nutritional factors that seem to decelerate demise? Seems Ji has at least reviewed much of the extant literature. I mean he has over 3,000 diseases indexed from strictly ncbi citations http://www.greenmedinfo.com/disease/huntington-disease

James Henrick,

Why are the quacks so dominant!???

Mercola and Adams are multi-million dollar commercial operations that use sophisticated marketing strategies to promote their BS. I strongly suspect both of them have full-time employees working on promoting their sites. Orac's blog is his personal hobby, not a commercial enterprise.

By Krebiozen (not verified) on 27 Mar 2015 #permalink

@K Locke:
Really? CF? Down's? Sickle Cell? Pea plant heights, for Mendel's sake?

@James Henrick:
I wouldn't be surprised if some black hat SEO was involved as well in Adam's cases, given his past experience with spam.

By justthestats (not verified) on 27 Mar 2015 #permalink

Really? CF? Down’s? Sickle Cell?

Fatal Familial Insomnia. Inherited colour-vision deficiency. If there are nutritional or epigenetic factors which will provide colour vision to someone with blue-cone monochromacy, there are many people who would like to know them.

By herr doktor bimler (not verified) on 27 Mar 2015 #permalink

I don't want this to seem like I am in agreement with the quacks,
but Jolie is 39 and bilateral oophorectomy before the age of 45 is associated with increased mortality.

Lancet Oncol. 2006 Oct;7(10):821-8.
Survival patterns after oophorectomy in premenopausal women: a population-based cohort study. "However, mortality was significantly higher in women who had received prophylactic bilateral oophorectomy before the age of 45 years than in referent women (hazard ratio 1.67 [95% CI 1.16-2.40], p=0.006). "
but http://www-ncbi-nlm-nih-gov.ezproxy.med.nyu.edu/pubmed/17012044/

By Randolph Kruger (not verified) on 27 Mar 2015 #permalink

Read it again. Reading the abstract I can tell that this study doesn't support the quacks. Can you guess why? :-)

Hello ORAC. I LOVE your work. I happen to live in a Cali community super saturated with freaks and alt med quacks. Makes my stomach turn. One question I am hoping you can answer, because I can find it nowhere, is how did Jolie's physicians arrive at the 50% lifetime risk for ovarian cancer figure, since even Myriad Genetics states the penetrance of BRCA only generates as high as a 44% increase. Thank you!

By Caitlan Smothers (not verified) on 27 Mar 2015 #permalink

"alternative medicines combined with frequent checks" or combined with frequent "cheques" ....

Jypsy: The latter, I think.

By Politicalguineapig (not verified) on 27 Mar 2015 #permalink

RE: Sayer. His site actually was pretty decent when it first came out. Basically a repository for studies on herbs and such. Not much commentary, just posting studies and some search functions.

After a while he tried to get a subscription base to the site. When that (ostensibly) failed he started to go the way of Adams posting increasingly hostile opinion pieces with linkbait titles. This was right around the rise of social media and "viral" marketing. I can only assume his rankings started to plummet and he got scared and embittered.

Too bad really, as it used to be a great resource to refute those "There's no evidence to support the use of [insert herb here]" tropes that get bandied about by some folks who seem to think that NCCAM studies constitute the whole body of research on botanical medicines.

By What Happened … (not verified) on 27 Mar 2015 #permalink

K Locke,
Please do explain how epigenetics can fix a faulty gene that leads to the failure of a DNA repair mechanism. It seems to me that whether you up-regulate or down-regulate a faulty BRCA gene it isn't going to produce the protein required to fix damaged DNA.

By Krebiozen (not verified) on 27 Mar 2015 #permalink

@ Krebiozen:

If I might interrupt, the woo-centric would say that blissfully appropriate epigenetics- meaning the right diet, emotional environment and other esoteric features which I forget- would cancel out the effects of the faulty gene. Just like that!

By Denice Walter (not verified) on 27 Mar 2015 #permalink

Obviously- epigenetic effects of diet and environmental factors can't simply "fix" faulty genes or make one impervious to disease.

But let's not overlook that this particular woo-centric belief which we have such great disdain for is largely reactionary to the "science-based" tropes of days past. Namely the infamous "It's All In Your Genes" and "Diet Doesn't Matter" nonsense of the late 80's and early 90's.

Perhaps if science did a better job of managing its own hubris and refrained from declaring that the consensus-du-juor constitutes "Everything There Is To Know" then there would be less fertile soil for woo to sprout up and cause mayhem.

By Epigentics Say What? (not verified) on 27 Mar 2015 #permalink

wish I had realized you were coming...I would have sprung for a dinner:) Spoke to you briefly at TAM about that scumbag Bruzinsky... Enjoy your blogs and websites, hope to see you at TAM...

By Ernie Ondrias (not verified) on 27 Mar 2015 #permalink

Erm, sorry, but where in the quoted sections does Ms. Jolie mention 'holistic medicine'? The only near reference I read was to "doctors, surgeons, and naturopaths". Isn't naturopath the accepted term for someone who treats conditions with 'natural' methods as opposed to conventional ones?
BTW, if the site is 'undergoing construction' such that I can't comment on an article, how can I comment on this one? Rather... censorious, methinks.

By Sheogorath (not verified) on 28 Mar 2015 #permalink

This is where the stats are coming from

So I surmised. You do realize that Alexa's sole source of data is people who've installed their "toolbar," right?

The global rank for the entire Scienceblog is only 18,000, whereas sites like Mercola.com are top 2,400 in the world. I don’t know what kind of traffic ORAC’s excellent blog gets, but if the entire platform is only getting 1/6th Mercola’s [rank]

Those ranks aren't calibrated to anything in any event. There's no way to translate them into anything resembling a quantitative statement about traffic. Alexa just isn't an analytics tool.

BTW, if the site is ‘undergoing construction’ such that I can’t comment on an article, how can I comment on this one? Rather… censorious, methinks.

Does that statement have some of referent? The IT geniuses who "maintain" SB haven't figured out how to insert the correct message when thread comments automatically close after three months, if that's what you're talking about.

Epigentics Say What?,

Perhaps if science did a better job of managing its own hubris and refrained from declaring that the consensus-du-juor constitutes “Everything There Is To Know” then there would be less fertile soil for woo to sprout up and cause mayhem.

Generally speaking 'science' doesn't declare it knows everything. Scientific papers, reputable ones at least, usually couch their findings in very conservative language. I blame your impressions on newspapers and other media outlets that often misinterpret, spin, sex up or otherwise distort the findings of scientific papers. In the UK the tendency of the Daily Express to print a sensational article every week about something that either cures or causes cancer is notorious. Inevitably, when I track down the source of the article it says nothing of the sort, and is usually an in vitro (or sometimes animal) study with preliminary results.

You could easily prove me wrong by providing a reference to a reputable scientist claiming that “It’s All In Your Genes” or “Diet Doesn’t Matter” in the 80s or 90s, both of which sound more like newspaper bylines to me.

By Krebiozen (not verified) on 28 Mar 2015 #permalink

Sheogorath:

Naturopathy is a set of beliefs, and naturopaths are expected to take certain courses, and pass exams on them (though they can then add almost anything they want to the mix). Homeopathy is a large part of the curriculum and the exams. Yes, you might be able to find a naturopath who never uses homeopathy—it's really a roll-your-own "specialty," and a naturopath can use lots of herbs, or lots of massage, or faith healing, or anything else they feel like that isn't restricted by state law (so surgery is probably out, and prescription drugs may be, even if they're derived from natural sources).

I'm not sure what "natural" means in this context, but homeopathy includes preparations that are allegedly derived from pieces of the Berlin Wall, which sounds pretty damned artificial to me.

Any restraint Mike Adams might have shown in not leaping to again condemn Angelina Jolie is counterbalanced by his conclusion (no big shocker) that the co-pilot who crashed the Germanwings plane did so because of evil antidepressant medication, namely SSRIs (which Adams has concluded he was taking, apparently based on something other than actual evidence). True, at the same time Adams comments on speculation that Lubitz had stopped taking medication to pass a urine test. So either taking antidepressants or not taking them was responsible for the crash, either way it's Big Pharma's fault.
(until the psychiatric angle turned up, Adams was leaning toward another of his favorite theories, a government "false flag" operation to explain the crash).

Irony alert: While condemning SSRIs, Adams sells a drug in his NaturalNews store that is thought to act as an SSRI - St. John's wort (it's part of a couple of combo packs that the store sells, including a ridiculously priced "advanced herbal medicine cabinet"). Maybe it's only a matter of time until a mass murder can be traced to something NN sold the killer.

Adams is a poisonous turd.

By Dangerous Bacon (not verified) on 28 Mar 2015 #permalink