Suzanne Somers has changed her diagnosis

Athena-Lioness,

What are you talking about?  Nobody is more acutely aware of the risks to chemotherapy and radiation than oncologists.  They see and manage these risks every day.

Do you still get into your car in spite of the risks?  If so, why?  You get into your car in spite of the risks - of which you are well aware - because you have decided it more beneficial or desirable than the alternative, and you have accepted the potential risks.  You've moved passed the risk because you recognize the teleporter hasn't been invented yet.

Should oncologists sit around emotionally dwelling on the risks?  Should they sit around saying "Oh how I wish upon a star the risks were not what they are"?  Should they say this ten times daily, like some kind of recitation or affirmation exercise so that they don't forget how imperfect and limited current treatments are, as though watching people get sick or die all the time isn't reminder enough?

The risks are whatever they are for any given treatment modality/approach, at any given time, for the current state of art that can pass scientific scrutiny (which is always evolving).  Doctors know the risks and move beyond them because the assumption is that you have, too, or you wouldn't be there.

>>In the world of breast cancer, there is no medical, purposeful cure and nobody knows why some are cured and some are not. Given this reality, scientists owe advocates of alternative therapies at least an ear.<<

Now this is the real arrogance.  Watching SS and the alt-med doctors on Larry King, it struck me that these people sit at the table criticizing conventional medicine for its failures as though alternative medicine has achieved some kind of parity in proven or verifiable successes, like they have earned the right to be there through their successes.

Again, conventional medicine cures cancer, not in a handful of poorly documented cases or unverifiable "testimonials", but in THOUSANDS of verifiable cases every year with REPEATABLE results. In cases where cancer cannot be cured, conventional medicine substantially prolongs life with a reasonable quality of life in THOUSANDS of verifiable cases every year with REPEATABLE results.  Alt-med cures NONE and substantially prolongs the life of NONE, that anyone can verify and repeat (customer testimonials notwithstanding).

Do these people not have any clue how arrogant they are?  If someone brings ZERO successes to the table and are allowed to sit with others whom do have proven successes with verifiable and repeated results, they have "earned" the "right" to do exactly two things; keep their mouth shut and listen.

Brewster,

It is true that there is little statistical evidence supporting alternative/complementary therapies.But don´t hold it against alternative practitioners that when/if they do research, it doesnt get published in major peer-reviewed journals. Those journals are run by conventional physicians and the peers who review manuscripts are also conventional MDs. As in any other academic field, they are looking for papers written from within their paradigm. There are now a few journals that focus on evidence-based studies of alternative/complementary/integrative approaches but they are mostly very new. The oldest one I am aware of was created in 2003.

Even when there is evidence for unconventional therapies, doctors don´t tend to give it much thought. Case in point--my experience with the orthopedist that I mentioned above. Acupuncture is proven to be successful in controlling pain. Why didnt he suggest it in the first place? and when I went and did it on my own, why did he brush it off? And over the 10 years since my 1st dx, the various oncologists I have been treated by have never said anything about nutrition unless I asked specifically. Nutrition is not a cure-all but they know it is important, so why dont they talk about it more?

They should leave no stone unturned in the search for a cure and that includes alternative approaches. When I was first dx´d Stage 2A ten years ago, I did everything I was told to, including six months of chemo, but I still wound up metastatic. Obviously the treatment they had to offer me didnt work well enough. Now, when my doctor is trying to cheer me up he tells me I could live "as long as" 10 years. Gee, thanks, doc. If I were 70 years old I might be wowed by that but I am 49.

Of course I am not going to give up a treatment that might buy me those 10 years in favor of something with no track record at all, but still !!

I have never believed that by virtue of celebrity status you can tell me anything - anything.  Just like "stars" who write books about dieting, raising your children, living a happier life if you just buy their book.  If I want to know how to raises a child I will consult with a child psychologist who has been formally trained and who understands how we learn, emotions, and why, as humans, we do what we do.  Thank you very much.

If I want to know what kind of diet I should be following, I will consult with a nutritionist who has formal training in the area not some fly-by-night star with their own personal chef and trainer; not to mention the book they are trying to sell.

As humans, we are so very different.  One person could react one way and another a different way.  So for any treatment that can repeat, reliably, success I am willing to trust my body to.

I love anecdotal stories too.  I find nothing wrong with adding complimentary or alternative medicines to any regime - even if you don't have cancer.  But it should be "and" not instead of.

As to big companies holding out cancer cures - wouldn't that be some kind of international, unfathomable conspiracy.  What is more believable is that all these cancer researchers are basically doing the same thing - just in different hospitals, research facilities, states, and countries.  Wouldn't it be more advantageous to pool all those resources.  Just don't ask me how we could accomplish this because I dont' know.

These celebrities can write books and speak to us about their experiences certainly, but they come across as experts.  So, unless you have a string of degrees behind your name and a list of reputable published research you can site, stop practicing medicine without a license on national television.

There's my 2 cents.  I, too enjoy a spirited discussion!

Rebuttal from Dr. Gonzalez --the unknown story

Journal of Clinical Oncology Article Rebuttal

Recently, to our astonishment we learned that the Journal of Clinical Oncology, considered to be one of the pre-eminent oncology journals in the country, published an article about our NCI-NIH clinical study which claimed that chemotherapy worked better than our treatment with patients diagnosed with inoperable pancreatic cancer.

Though I originally earned the grant from the NCI in 1998, though I was an investigator on this study throughout its existence, and though the clinical trial was set up to compare the efficacy of my treatment with chemotherapy, no one involved with the publication - not the Principal Investigator, Dr. John Chabot of Columbia Presbyterian Medical Center, nor any of his associates, informed me of their intent to publish this article, nor had I seen it. I learned of it serendipitously when the online version appeared on PubMed.

I believe the article to be deliberately misleading in many regards, seeking to discredit me and salvage the reputations of those involved in supervising the study in the face of devastating findings of mismanagement on their part determined after official government investigations instigated at my request. In their official determination letter appearing on their website after a two-year investigation, the Office of Human Research Protections, the NIH agency in charge of investigating mismanagement on government funded studies, found that Dr. Chabot, who was in charge of admissions of patients, had improperly approved 42 out of a total of 62 patients, including 40 for whom he had failed to obtain appropriate written informed consent. Furthermore, the determination letter states that the Principal Investigator (Dr. Chabot) admitted he committed the managerial lapses, and in their letter the OHRP requires Columbia set up a program for training in appropriate research methodology - a serious indictment of a major academic medical center.

To my astonishment, the JCO article nowhere mentions the findings of the OHRP, as if this lengthy investigation never existed, leaving the reader with the impression this study was properly managed by Dr. Chabot. In that regard, the article is a gross misrepresentation of what actually transpired during the study's sad eight year history.

Furthermore, Dr. Chabot's JCO article also completely ignores a letter dated January 27, 2005, written in response to my ongoing complaints that because Dr. Chabot had admitted so many patients into the nutrition arm of the trial who could not or did not comply, any comparison between the two groups was meaningless. In her letter, written as the official spokesperson for the NIH, Dr. Engel concurs, stating that:

In spite of everyone's best efforts, it appears as if the current design and implementation of the study may have resulted in accrual into the two study arms of patient populations that are not comparable. As a consequence, it is very difficult (if not impossible) to ascertain treatment effect with certainty.

Later, she writes:

We discussed at considerable length his concerns about the probable accrual of patients unable to comply fully with the nutrition arm of the protocol. It was our impression that everyone in the room basically agreed that, despite best efforts, there is in fact, reason to be concerned about this issue, and that it clouds interpretation of the data.

More recently, Congressman Dan Burton of Indiana and I have requested that the Inspector General of the Department of Health and Human Services begin an investigation to determine if the supervisors of the study committed fraud in the mishandling of the project and its data. We have learned, for example, that according to the published medical literature, Dr. Chabot, who as Principal Investigator should have been a completely neutral manager with no ties to either treatment being evaluated, had worked closely with his Columbia colleague developing the very GTX chemotherapy regimen used against us in the study - an obvious conflict of interest that had never been declared to us. We suspect Dr. Chabot believed it was in his best interest to discredit our alternative therapy and instead prove the value of a treatment he helped develop.

Ironically, with no knowledge of the pending JCO article, I had only recently completed a lengthy book detailing the problems with the study and the gross mismanagement committed by the so-called conventional academic researchers assigned to run the project, and the attempts of myself and my colleague Dr. Isaacs to abide by the tenets of appropriate scientific investigation. It makes a good story of deceit, collusion, and disregard for patient safety that reaches right into the highest levels of the academic medical community

Below I include a number of documents, several extracted from the book itself, that summarize the study's history, and its various well-documented problems.

• The Truth About The NCI-NCCAM Clinical Study
• Excerpt summarizing problems
• Excerpt chapter on informed consent
• Letter from Dr. Engel
• Link to OHRP findings
• My answer to OHRP
• My letter to Columbia Dean (December 2006)

Pitanga,

One reason doctors don't endorse or indulge acupuncture is because it has not shown to be any more effective than existing first and second choice treatments.  Its not always enough to just say, this works compared to placebo, but how does it compare to existing preferred treatments or approaches.  If you can't show its really BETTER than what we already do, its very true that many doctors aren't going to change what they do.  Perhaps they should, but resistance to change is not some unique property or trait of conventional medicine.  Its pretty much a human trait across the board.

As for nutrition, its also very true that some doctors are more or less integrative about nutrition than others.  A lot of doctors feel its not their area of expertise, that's why we have registered dietitians.  No different than doctors who prefer to 'out-source' advice about exercise to a physical therapist.  Differentiation of labor, in a manner of speaking.

Other doctors feel very comfortable discussing it.  I personally wouldn't seek advice about nutrition from a doctor for the very reason that a registered dietitian is almost certainly going to know more than your doctor, anyway.  I would ask the physician if he could recommend a registered dietitian (or does he have one that works with his practice), and if not, does he have any objections to you using a registered dietitian for nutritional support.

Make sure to use the title "registered dietitian" and not "nutritionist" (if you're in the USA and Canada).  Registered dietitian is a legally protected title, but pretty much anyone can call themselves a nutritionist, including those with no degree whatsoever.  Doctors don't have any problems with registered dietitians but they may be wary of unqualified individuals referring to themselves as nutritionists (some even claim to be "certified nutritionist", a designation that apparently can be obtained through correspondence schools or something).

Brewster, thanks for pointing out the difference between Reg'd Dietitian and Nutritionist.  I've seen some pretty wonky and factually incorrect stuff coming from "nutritionists" -- a lot of it on the web (usually in conjunction with selling products).  I avoid websites sponsored or promoted by anyone in the health industry where there is product on offer....

My hospital does provide acupuncture, Chinese herbals, reiki.  I do think some hospitals/doctors are open-minded about these complementary treatments.

anomdenet -

I'm just curious if you've ever known anyone with pancreatic cancer?  My cousin died from it within 9 months of diagnosis.  Most people are diagnosed with very advanced pancreatic cancer, and I'm hornswaggled if I can fathom how a clinical trial featuring supplements and coffee enemas is going to help someone who can't digest much of anything.  I'm just curious to know if you're familiar with just how sick people with pancreatic cancer are - I mean, it's ungodly.  My cousin was in and out of the hospital constantly, had to have a leg amputated, threw up everything - it was absolutely horrible. 

A teacher at my son's preschool was diagnosed with pancreatic cancer right after school ended in June and died before school started again in September.  Its a monster of a cancer.

Perhaps SS had a reaction to the obvious collagen in her lips..... that is so funny, Denny123

I know the hospital where I get my treatments offers accupuncture to help relieve pain.

Hi. Just wondering. What is that fungus called?  Is it histoplasmosis or something like that?   I have been told I have califications in my lungs from a fungus -- told it is common in wisconsin? 

They can break open and you can cough up blood?  They never told me that but I'd probably get so scared..... my first thought would be serious lung mets. 

Any insight/ info would be appreciated as I know other ladies have  had stuff like this in lungs too.

Wendy

Desdomona - my Mom died of pancreatic cancer.  She exhibited symptoms shortly after my stepfather died suddenly of a heart attack.  We all assumed it was stress.  She went to the doctors constantly trying to figure it out - at one point they thought she had diabetes!  When they finally did a cat scan they found mets to the lungs and liver.  From the actual time of diagnosis to her death was only 6 weeks.  You are correct - it is a horrible death.

I actually read the book so I could be accurate in my comments. 

It was everything I thought it would be.  GEESH!!!! Would someone hand SS a brain and teach her to use it, not just to follow the latest junk science?  She couldn't even accurately relay the science of the people she's trying to promote!

Kathleen et al:  Having my MIL die from pancreatic this year, I can really agree.  I wouldn't wish that death on anyone.

With any other kind of cancer people, including healthcare providers, will reach out and offer hope.  When you tell someone, at least in the medical profession, that a loved one has pancreatic cancer, their response is always "I'm so sorry."

Flash - sorry about your MIL.

SS is an actress.  I would highly doubt she put any research into this book.  Now if she wrote a book about playing a dumb blonde she would be more believable!

So if SS wrote a book about the wonders of chemo, agreeing with you all, would you then nominate her for the Nobel Prize? Hmmm  how about taking what makes sense to you and embracing the good in her book, and disregarding what doesn't make sense to you. Man I am so sad that anything that goes outside our comfort level gets so attacked.