Polite Explanations are Welcome....

thenewme

Hi Sweetbean, we can agree to disagree on BCA and EWG, but I completely agree with you  that "...  Toxins play a very real role in cancer and a number of other auto-immune and neurological disorders and the fact that we allow all these corporations to pollute is just crazy. Junk science is organizations that say parabens and BPA are safe, when they clearly aren't." 

thenewme

VR, re: "Some how i think Lucy will tell us that the NCCN doctors are engaging in Groupthink. Ditto for ALL doctors in EVERY specialty that create guidelines."

You're probably right.  Of course groupthink comes into play to some extent, but I'd rather have the NCCN groupthink over some anonymous "secret study group" with a clear political agenda and very anti-science groupthink advising me on breast cancer treatment.  

voraciousreader

Thenewme... From my perspective, I find having guidelines comforting. Again, I think they should be used as a starting point for discussing treatment. Imagine if you will for a moment the DH who has an orphan illness where there are NO treatment guidelines whatsoever to guide us. The only thing that guides us is the TRUST that we have for these extraordinary researchers and clinicians. Imagine that! TRUST.

thenewme

VR, I completely agree!  

Here are a few direct quotes from the NCCN guidelines that again dispel the notions that there is any such thing as a one-size-fits-all treatment plan or that doctors are "bound by the guidelines," etc.  (bolding mine)

"These guidelines are a statement of evidence and consensus of the authors regarding their views of currently accepted approaches to treatment. Any clinician seeking to apply or consult these guidelines is expected to use independent medical judgment in the context of individual clinical circumstances to determine any patient's care or treatment. "

"Treatment should be individualized with consideration of comorbid conditions."

"The selection, dosing, and administration of anti-cancer agents and the management of associated toxicities are complex. Modifications of drug dose and schedule and initiation of supportive care interventions are often necessary because of expected toxicities and because of individual patient variability, prior treatment, and comorbidity. The optimal delivery of anti-cancer agents therefore requires a health care delivery team experienced in the use of anti-cancer agents and the management of associated toxicities in patients with cancer."

"These estimates may be utilized by the clinician and patient in their shared decision-making regarding the toxicities, costs, and benefits of systemic adjuvant therapy."

voraciousreader

Thenewme... But AlaskaAngel will be along soon to tell us that the doctors don't read the NCCN guidelines' fine print or footnotes.....And even if they do read them....they will find a way to ignore them! Amazing that they are even published online. Heaven forbid there be transparancy....imagine an enlightened patient who understands their treatment options that includes alternatives...

thenewme

Re: "the doctors don't read the NCCN guidelines' fine print or footnotes.....And even if they do read them....they will find a way to ignore them!"  Those doctors should be reported, sued for malpractice, and stripped of their license if found guilty.  I'm still wondering whether AA has taken any action against her lying, cheating, negligent, sabotaging doctor.  

Re: "Heaven forbid there be transparancy....imagine an enlightened patient who understands their treatment options that includes alternatives..."  I know, right? 

voraciousreader

Thenewme... I take what AA says with a grain of salt. Who REALLY knows what happened. You know the expression,"There are two sides to a story and somewhere in the middle is the truth..."

AlaskaAngel

Thank you for your question:

thenewme: "Those doctors should be reported, sued for malpractice, and stripped of their license if found guilty.  I'm still wondering whether AA has taken any action against her lying, cheating, negligent, sabotaging doctor."

Yes, I have done so.

A.A.

thenewme

Yup.

In my opinion, if a patient has really and truly suffered such gross negligence from a doctor, then the  only thing to do is to take action, for her own sake and that of other potential patients.   Airing a longstanding grudge on an internet forum doesn't really help with the credibility factor if appropriate "real-life" action was not taken.  JMO, of course.  

thenewme

What was the result?  

voraciousreader

Thenewme... Keep in mind that AA's problem is that she perceives ALL doctors in the way she perceives her doctor. Sisters should not make that generalization. That is why she is dangerous.

AlaskaAngel

thenewme: You have chosen to delete the message I was responding to, the one referenced by VR below, and referenced by your present inquiry shown below, showing some confusion about what you are willing to let others see:

voraciousreader wrote:

Thenewme... I take what AA says with a grain of salt. Who REALLY knows what happened. You know the expression,"There are two sides to a story and somewhere in the middle is the truth..."

thenewme wrote:

What was the result? 

suzieq60

AA - how do you know your problems wouldn't have happened with natural menopause??? or even OA??

thenewme

Oh brother.  I deleted my post above because you (AA) clarified that you DID take action against your rotten, negligent doctor  so my post was no longer relative.  

Basically my post said that complaining without action isn't particularly useful.  

What was the outcome of your action against the doctor?   

AlaskaAngel

susieq58

Each person's situation is different as to what benefit they feel is worth going through the treatment. I have zero problem with people who have been given a clear and unbiased understanding of all available choices then making their choice. There are no perfect choices and they all have unpleasant consquences. What matters is that the choice for treatment should be informed and should be truly their own, and not limited to what a physician might favor. If all doctors always recommended exactly the same treatment and there was only one treatment choice for the specific patient and it was absolutely certain that it always worked, then the person still could choose not to do it if that was their preference for other reasons.

I was one of those patients who would have definitely chosen not to do the recommended treatment for other reasons. That should be my right, and the doctor's bias should not interfere with that by failing to honestly indicate there are other treatments I could choose from.

A.A.

suzieq60

AA - what was the outcome of your complaint?

Circles

AA, I so agree.  I too am rebellous in not chosing Standard of Care.  My Onocologist wanted to start chemo immediatly but I insisted on the Onco test.  Now I have proof--solid proof that you have to be your own best advocate and do your own research.  I am not a canadate for chemo.  How about that?

AlaskaAngel

susieq58: This is the focus of this thread:

Can someone explain what the rationale is that is being used to hold up progress?

TEN years ago when I was diagnosed, it was possible to do comparison studies in other countries that showed the effectiveness of such treatment as ovarian ablation plus "X" drug, versus standard chemotherapy for early stage bc:


http://jncimonographs.oxfordjournals.org/content/2001/30/67.full

and


http://jncimonographs.oxfordjournals.org/content/2001/30/67/T2.expansion.html

How long will it take for us to get a comparison of either ovarian ablation and trastuzumab alone (or possibly trastuzumab plus lapatinib) for premenopausal early stage HER2 positive bc patients, versus standard chemotherapy, in this country?

.........................

What is puzzling is that our system of care acknowledges the results and relevance of these studies, and is continuing to plod slowly to evaluate ovarian ablation as a possible option, while fully authorizing the use of chemotherapy plus other medications, even though they do not know what percentage of benefit should be attributed to the other agent or attributed to the chemotherapy.

Ten years ago other countries allowed comparisons that did not include chemotherapy to be made. And we learned from them.

Circles

You bet!

voraciousreader

Does anyone see a pattern here? AA will claim that SOME women are not told what choices they have regarding treatment. BUT, in her mind she believes MOST women are not given enough information. So, when someone points out that they were pleased with their treatment decision process, AA will back track and say, "Well,this is what happened to me.". And in a magnanomus tone she will then remind EVERYONE that what happened to her TEN YEARS AGO could still happen, sooooo EVERYONE needs to be alerted to unscrupulous doctors and researchers. And don't forget...(mind you, I haven't forgotten..)..she admonished us that if you choose chemo, which she referred to as "consumer demand" then YOU the patient are enabling those unscrupulous doctors from finding better treatments with fewer side effects.





If anyone thinks I left anything out.... By all means, feel free to comment.



Am I being polite enough? Probably not. But I refuse to permit AA to back track and appear magnanimous. I don't appreciate people who talk out of both sides of their mouths. Disingenuous comes to mind.

voraciousreader

Here we go again! A decade! Haven't we pointed out how long it takes to do trials? Haven't we pointed out that sometimes it is difficult to accrue enough patients into a trial? Oh, BTW... The SOFT trial that is looking at ovarian suppression as a treatment as opposed to chemo which began 9 years ago.... has now closed and thankfully as of JANUARY OF 2011 met its quota and now we are waiting for results... which should be available in 2014-15.





And, despite the fact that we don't know the results there ARE U.S. doctors offering their patients O/S instead of chemo.





But AA rages on....

Member_of_the_Club

I don't understand why OA would be considered a less invasive choice than any chemo or hormonal pills.  Thats essentially the amputation of perfectly healthy body parts.  There is some feeling that Ovaries serve a protective function separate from producing estrogen.  In other words, there is a cost to removing them, a permanent cost.  In contrast chemo and hormonals are temporary (yeah, I know they can have last effects, but OA is always permanent).

Maybe I'm missing something. 

voraciousreader

Member... Your points have been mentioned numerous times by other sisters. However in AlaskaAngel world, researchers and clinicians at best, drag their feet in conducting trials and at worst, obfuscate whatever information there is...preventing sisters from making an informed choice.

digger

I'd say that some "out of the box" thinking is called for, AA.  Really reminds me of fungal world, I hate to say, where everything is just a bit topsy turvy.  

Just repeat to yourself out of the box, out of the box, AA. 

AlaskaAngel

Member_of_the_club, and susie58,

We are in agreement. There are disadvantages to OA.

We are in agreement. There are disadvantages to chemotherapy.

Is there any reason why breast cancer patients should not be told that each of these are an option they are free to choose from at the time they are considering treatment, if chemotherapy is being offered to them?

Some of those posting here are firmly against having breast cancer patients be told what all of their possible choices are -- including discussion of the common advantages and disadvantages -- and they believe that the visit to the doctor to discuss therapy should avoid mentioning anything but chemotherapy. They believe that patients don't understand how to choose from all the possible choices, and that the doctor should make that choice for all patients every time.

Is that what you believe?

A.A.

AlaskaAngel

OA is just one of the possible choices, Digger. The question is, since we do know that it has successfully been used for breast cancer treatment over the years, are you opposed to it being openly offered and considered by breast cancer patients as an option, especially for those patients who are not interested in doing chemotherapy?

A.A.

apple

"

"Is that what you believe?"

no.. i believe you are a bit doctor/medical establishment prejudiced.   

why?  who knows?  not me.  we all have our issues i suppose..

anyway, ovarian oblation, suppression, removal, whatever is an oft utilized part of treatment......just so you know.   I think that natural is best, and i think many doctors do too.  It's a bit of overkill to suggest, ovarian ablation across the board in that it is only suitable for women with ER+ breast cancer who haven't reached their menopause. 

 only the negligent or greedy would perform procedures recklessly without warrant or need.

voraciousreader

I was told I didn't need chemo. However, I was also told if I wanted it, then that was okay too. Then I was also given the alternative of O/S.



I got all the necessary info to make an informed choice. I'm telling you all.... AA is shocked that many us made informed choices.





Has anyone noticed that she STILL hasn't told us the outcome of her complaint against her provider?? V

Anonymous

AA. I have been reading your posts for a while. I just wanted to say "thank you" for being an intelligent voice for women who are not happy with the status quo. 

Non toxic cancer treatments will only come to the market when demand for them decreases. Congratulations to the many breast cancer survivors, alternative cancer clinics and non profit organizations who are questioning the status quo in the breast cancer world - pinkribbonblues,Oasis of Healing, Gerson Institute, chemobabe, uneasypink, accidental amazon, rethink pink, thecancerculturechronicles breast cancer action and regrounding, etc.

Getting women  to wipe the complacency out of theirs eyes, wake up and question the status quo and be their own advocates are the first steps in bringing real change!

voraciousreader

AA... O/S IS MENTIONED IN THE NCCN GUIDELINES. How much more open do you want it to be?! Perhaps it should be attached to the Goodyear blimp?!