BCO PAGE RE: Pain and Attitude

sas-schatzi

RE:German study

Mods Please send this on to the editing board. Normally, I'd keep this between us, but it will get posted by one of the research geeks, So, I'll be the first research geek to post it.

I respectfully ask that the new page, be pulled until further research can verify what the German study is promulgating.

http://www.breastcancer.org/research-news/hormonal-tx-effects-worse-when-expected

http://annonc.oxfordjournals.org/content/early/2016/08/02/annonc.mdw266.abstract?sid=37907078-2ddb-4bb9-837e-d4e6a55d0072

These psych type studies have been rife with bias researching for years. This study has NOT been duplicated by any other research group. It may have gotten through peer review at oxford journals , but SO did the studies with Aromatase Inhibitor Novel drug Arimidex. The lead researcher in that group from Michigan said in a post marketing interview. "We did not see the complaints of Bone, joint and muscle pain, we will have to look into this". No shit Sherlock.

I know folks at BCO watch what's happening on the boards. We have LOT's of very strong women here who went into AI and Tamox therapy who have been laid low by these drugs with all kinds of s.e.'s

Now this study that has a small cohort 111. I can see 111 people at dinner @ Olive Garden. This is not appropriate at this time for this board.

Someone has to relook @ the whole subject and search for comparative studies.

This is a damaging article to the worldwide BC community. Docs all over the world will be using this very limited study to tell patients that it's all in their heads.

Did you notice the department that the researchers were working out of? Department of Psychosomatic Medicine and Psychotherapy. Right there tells me they have a bias.

Do what you can, but my first duty is to BCO members.

/////////////////////////////////////////////////////////////////////////////////////////

This is a mantra that I think should be come part of our response to any talk of "Attitude"

" This study states "attitude" can affect outcome. Let us go to the Angels thread and think about who had a negative attitude.

I have many on that list, that fought hard for their lives. They did everything possible to live. They endured the onslaught of s.e.'s of treatment. Some for a short time, some for many years. "

sas-schatzi

This note went to the Oxford journal/ annals of oncology

Can't believe you published this very lacking study. The cohort was 111. with a high dropout rate.
Do you have any, any clue the damage you have done to women in the world wide BC community. Some docs are now going to tell their patients it's all about there "attitude".
If you had bothered to really review the subject, you would have never published this very inaccurate study.
But now it will be quoted to millions of women for years, by docs that believe this drivel.
I have been active in the Breast cancer community since 2009 on breastcancer.org. You have trivialized this poison that cripples women with pain and disability. How irresponsible of you. Unforgiveable. I usually trust you as a source. You have lost my trust. Shame on you. Shame

ShetlandPony

The BCO headline says "If You Expect Hormonal Therapy Side Effects to Be Bad, They Will Be". It assumes that this one study has proven the idea as a fact! There is no discussion, no nuance. See more comments by discussion board members here:

https://community.breastcancer.org/forum/78/topics...

sas-schatzi

Shetland thanks for the link, the steam is slowing out of my ears, and the nail spitting stopped a bit ago

BTW did you see my last post to you on the Port thread

Hopeful82014

I was shocked by the headline that BCO chose for that article. I feel that it overstated the results of a very minor study with a very small cohort.

ETA - I feel the authors really overstated the results in stating "Expectations are a genuine factor of clinical outcome from endocrine treatment for breast cancer."

In addition, they stated that some SEs were noted that are not associated with AI, such as dizziness. Well, I don't know about their patient inserts but mine always advised that dizziness was a possibility. My PA also advised that this was possible and that taking femara at night might be a good idea.

While the concept is interesting, the research doesn't seem particularly robust or reliable to me.

exbrnxgrl

I may have too much confidence in the ability of my fellow human beings to be discerning when they read research, but I was hoping that those reading this piece would understand it's limitations, not take it as gospel.

sas-schatzi

Hi Hopeful and Kayb, I've finally calmed down a bit.

Psych studies are the most suspect of drivel. Look at Freud. He' was once the GURU. Now totally discounted. In nursing school, our teachers were very good at guiding us to what Boards required as answers. I had several years at university before leaving to go to a hospital based nursing program. More psych courses and info than what was being provided by the school. I disagreed with Freud, I believed in B.F. Skinners Behavior Modification. That was 1974. Sure as shootin, there was a question that had a choice between the two. I choose Freud b/c he was the "In thing" in nursing then. Skinner was really the right answer.. Diverging to make a point.

What some idiot produces doesn't make it true.

Not sure what we can do as a community to discredit this study. I wrote that note to the journal, but I was still spitting nails and ear steaming. I did however, avoid the swearing. The discussion on Bronxgirls thread is being very polite and adult and reasonable.

I don't wish to be so reasonable. I believe they have done all BC patients harm. The first rule of medicine is "Do No Harm".

Any ideas

sas-schatzi

This is a repost from the other thread

Hi folks, I had a question from a newbie tonight on this and followed the link she gave me, Then read the German abstract. Couldn't get at the main study b/c I wasn't a subscriber. So, I wrote to both BCO and The oxford Journal that link is https://community.breastcancer.org/forum/73/topics/847566?page=1#idx_2

Attitude is wonderful. But over working with patients and students, and let's throw in administrations since 1969, in all phases of nursing. Here since 2009. Being a patient since 2009. Working with a DH who had a great attitude and is dead. That friggen piece of drivel shouldn't have been published.

What few realize is the trouble that psych sources have with their studies b/c of bias and down right fraud. AND then there are simply the screw ups.

Just recently a researcher flipped his data unintentionally . The study was on characteristics of groups. He labelled two groups with characteristics. One whole group was identified with characteristics that are perceived by our societal standards as negative and the other group was a societal positive group. The media used that research to try to sway the public. A Demark researcher caught the data flip. The original researcher had to write an Errata(Oops, sorry I screwed up). 49 other studies used the data from that one study. They all had to write Errata's.

Back to topic, the damage is done with this stupid German study . Once something is in the public domain. It will be quoted for decades, unless someone catches it and says " BTW, you missed the Errata". The media doesn't care, this will be out there forever, being stupidly quoted.

exbrnxgrl

Sas,

Thanks! Swearing is not my thing, so I appreciate the restraint 😊.

sas-schatzi

"Just recently a researcher flipped his data unintentionally . The study was on characteristics of groups. He labelled two groups with characteristics. One whole group was identified with characteristics that are perceived by our societal standards as negative and the other group was a societal positive group. The media used that research to try to sway the public. A Demark researcher caught the data flip. The original researcher had to write an Errata(Oops, sorry I screwed up). 49 other studies used the data from that one study. They all had to write Errata's."

This is from my last post. I'll add to this with the particulars latter.

What this says about the psych group is ---they aren't into truly studing the studies. THAT IS SCARY. Hope this doesn't happen much on the hard science side. But in fact it does.

Take obesity and BC and healthy lifestyles. Science IS close to showing a causal relationship between obesity and lifestyle. But it has to do with the Microbiota. They have made the connection in mice(Kayb your study). There is a causal empirical link with birth route and microbiota related to latter obesity. Enough that human newborns are being inoculated with Mom's vaginal secretions after C-section birth. There is something I can't quite remember about latino's and a gene that predisposes them to obesity, but read about during the microbiome study.. The point here is prior to the last say few years. the connection with obesity and BC was Empirical based on meta-analysis of thousands.

Empirical may cause life changes, DUH that's how we got here as a species. Observation and applying those observations. BUT nothing was based on a two year observation of a small number of folks

Well I' guess I am still steaming, b/c the pontification continues.

sas-schatzi

Hi BronxGirl, as you can see I was very restrained on your thread. Thanks for coming here Frankly, I do love it when it's my thread b/c I can really let loose. I do try to maintain decorum on someone else's thread.

sas-schatzi

http://www.smithsonianmag.com/science-nature/scientists-replicated-100-psychology-studies-and-fewer-half-got-same-results-180956426/?no-ist

Scientists Replicated 100 Psychology Studies, and Fewer Than Half Got the Same Results

The massive project shows that reproducibility problems plague even top scientific journals

Read more: http://www.smithsonianmag.com/science-nature/scientists-replicated-100-psychology-studies-and-fewer-half-got-same-results-180956426/#YLJOwvsYwD2vVDM2.99
Give the gift of Smithsonian magazine for only $12! http://bit.ly/1cGUiGv
Follow us: @SmithsonianMag on Twitter

Meow13

I dont need anyone to tell me my side effects are based on my attitude. I am a very stable mature woman that has gone thru and seen alot in my lifetime. Believe me when I SAY my side effects were in no way related to my attitude.

sas-schatzi

http://retractionwatch.com/2016/06/07/conservative-political-beliefs-not-linked-to-psychotic-traits/

"Just recently a researcher flipped his data unintentionally . The study was on characteristics of groups. He labelled two groups with characteristics. One whole group was identified with characteristics that are perceived by our societal standards as negative and the other group was a societal positive group. The media used that research to try to sway the public. A Denmark researcher caught the data flip. The original researcher had to write an Errata(Oops, sorry I screwed up). 49 other studies used the data from that one study. They all had to write Errata's."

But the original stuff for all is in the domain. Once in the domain it's there

sas-schatzi

HI Meow, Yes, I agree, oh so entirely. We need to hang these researchers out to the vultures for their laziness. But I would like to see the whole research article.

Fallleaves

Not to play the devil's advocate, but this study sounds like it was related to the "nocebo effect", which is essentially the opposite of the "placebo effect". It's pretty well established that the placebo effect is real, so it wouldn't surprise me that expectation of a certain outcome works in a negative way, too. Don't hit me Sas.

Meow13

Falleaves, maybe but the effects are real it might be how you tolerate it. I know antidepressants can help you not care as much that your ankle hurts, something like that. I think saying your attitude can be contributing to the severity seems out there to me.

Fallleaves

Meow13, I totally agree, the effects are real. I think, though, that one's expectation of bad effects might exacerbate those effects. There are actual neurobiological substances triggered by anxiety, that might make things worse.

A lot of illnesses are influenced by neurological factors, so I would think they could impact treatments, too.

This is a recent paper on the nocebo effect of drugs, that explains some of it.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC48043...

sas-schatzi

Falls and all, no I get what you are saying. But 1. we don't have access to the full study 2. we both know full studies can alter what is worded in the abstract. 3. full studies can be very boring and tough to read, but tell a better story than the abstract. 4. I disrespect psychology making statements about drugs used for treatment.

I know you study well as do many others here. Drug monographs by the original manufacturer define usual s.e's . But here we have many threads that describe the physical damage done to our bodies by Tamox and the AI's. Once did a drug review with a member she had three 1:1000 s.e's Those side effects don't show up on a docs palm pilot., but they do in the original drug manufacturers data.

Sure many are alive. Some in remission b/c of these drugs. Doesn't mean that they don't do harm. Doesn't mean that their bodies aren't having s.e.'s to a drug(s) that aren't listed in the monograph.

Anyone that has followed the 2D6 thread knows that our bodies process chemicals differently. Did they verify these in this study?

BUT what this study states is "attitude" can affect outcome. Let us go to the Angels thread and think about who had a negative attitude.

I have many on that list, that fought hard for their lives. They did everything possible to live. They endured the onslaught of s.e.'s of treatment. Some for a short time, some for many years.

There are folks that now endure daily meds, monthly palliative chemo, and reoccurring cancers.

I object to this study b/c of it's size most particularly, and no access for scrutiny.

Do I think I can better peer review an article submitted to the Oxford Journal for Oncology? YES, that's quite arrogant isn't it. But I can. Many here could too.

See with peer review you have to know the subject. You have to know if it meets the rules of the scientific method.

I know the subject. I can't address the scientific method b/c the full study isn't available for review. Each element of a study has to be challenged for validity by peer review. Psych stuff is the easiest to fudge. It has a horrible hx of errors.

Plus, no study should be published on this level with this small of a sample, with the support of the wider community. In the drug or clinical trial, this would be a phase 1 level. Does the scientific community state this . No. It's published as if it were true. Yes, it does say they are doing a follow up study. I don't trust them. I guess I'm like Bones.

Did you see my post from the Smithsonian. Less than or = to 50% of revisited psych studies got the same results when done by other researchers.

In the hard sciences, that would be considered ridiculous. Took a few seconds to find a word. But ridiculous fits.

Honey have I ever jumped on you?

Edit. I generally avoid bolding, have for a couple of years, but this is serious. Those researchers got it wrong and I'm still pissed.

sas-schatzi

Okay, done revising 300 am.

Moderators

Dear Members,

Thank you for your feedback. Our editorial board has edited the wording of the title of the Research Article about Hormonal Therapy Side Effects. We appreciate the concerns that you raised. The Mods

Lily55

WAy to go SAS - THANK YOU for posting this, I am sick of us patients being blamed for things, like we would want to give ourselves side effects!!!!!!!

Fallleaves

I guess my issue with the study is utility. Even if a larger study supports the findings, how would this benefit patients? It would not be ethical for doctors to paint an overly rosy picture of hormone therapy (or chemotherapy) in order to reduce anxiety over the side effects. That would basically be lying, because there is no way to predict who is going to suffer from the worst side effects. So what is the point of the study? How would this change treatment in any way? There is already a strong incentive to deal with patient anxiety because of the negative impact on mental health.

The only thing doctors can do is provide a clear picture of the costs/risks (both physical and mental) of treatment, and the likely benefits, which they should be doing now, ANYWAY. Of course, those are always going to be guesses. Personally, I would love to see more quantification of the risks and benefits. You might hear a list of possible side effects, but how likely are they to happen to you? The doctors I've run across, anyhow, never seem to get specific. Is it 30%, 5%, .05%?

(And Sas, I know you would never come at me! But you could definitely take me in a battle of the brains, with your cerebellum tied behind your back, lol!)

Anonymous

Mods ~

Thank you for responding to and recognizing the concerns of our Members. While posting the study was well intended, I would like to request the article in its entirety be removed.

BCO is looked to as a source of reliable, credible, HELPFUL information. The information cited in the study is none of these things. Even hinting at the idea of side effects being psychosomatic is not only insulting, but potentially dangerous. All medications/treatments run the risk of side effects that can range from minor to life threatening.

There are 176,078 registered Members and a unknown number of others who "lurk" on the BCO Boards. How can a brief study of 111 women - of whom many dropped out- be of any practical relevance to any of us here?

ShetlandPony

Thank you, Mods and Editorial Board. Setting aside debate about the article itself and about its appropriateness, for the moment -- I think the new title is much better than the old one.

sas-schatzi

Hi Mods thanks for the title change. Appreciated, but I agree with others here regarding the removal of the whole article, but have a few thoughts

Every study published has to be scrutinized in detail for all the elements that are required by the scientific method. I've stated previously all my thoughts. Even as the steam was coming out my of my ears, those words are all valid.

A scientific discipline i.e psychology, that has a 50% failure rate to validate results in repeat studies(testing) is dangerous to depend on for any information. The Smithsonian paper was polite in it's phrasing. I'm less generous.

If removal isn't an option, I have a suggestion that the editorial board consider. Not all the details / thoughts have gelled, but bringing more minds together may allow for a solution.

First some background, years ago when I asked for the science forum to be developed, it was a place to put new info that may have interest to members. Here I will use the Toradol thread as an example. The Retsky & Forget studies are early studies. We approached the discussion with complete openness that it was preliminary i.e not yet validated, but was of interest enough to be considered by members b/c the risk of bleeding weighed against the benefit of recurrence prevention was important. We explored in depth with other research on the subject to study the questions related to their studies. That allowed for member decisions regarding the topic. It was the appropriate way to manage an emerging concept of care yet unproven.

For the editorial board to consider:

1. That a new study that is not yet proven be posted by the Mods in the Community discussion science forum.

OR

2. That any such unproven studies be placed in the BCO blog areas as many article are now placed.

Or

3. That the main board have a science forum area, that has a clear statement at the beginning that an article is preliminary research with research continuing etc.

or

4. Continue as you did with the article by giving it, it's own page, but with a clear statement at the beginning that the article is preliminary research not yet scientifically validated. This is effectively a disclaimer. In general disclaimers are written at the end of articles. But here on BCO, we have many that have minimal understanding of medicine, science, and treatments when they are first diagnosed. They aren't used to the lingo. They aren't used to the fact that just b/c something related to medicine, science, and treatments have been written, doesn't make it true i.e. this un-validated study re: Attitude. With the disclaimer clearly visible at the beginning, the reader is under no illusion that this is accepted as validated, but is placed there to pique the interest of the reader.

Personally, had that article been place in the Community discussion science forum, I likely would have commented in a less protective manner. Albeit, some might consider it aggressive versus protective.

What I do appreciate out of this experience is that we have had it for the following reasons:

1. It allowed for the discussion of the appropriateness of studies and the value of peer review in journals.

2. It allowed for spreading the word that the strength of peer reviewed studies, can allow for poorly constructed studies to be published.

3. It allowed for discussion of the importance of scrutiny of a full study versus an abstract.

4. I allowed for the discussion of the difference between a hard science and soft science. The soft sciences being psychology, sociology, anthropology that are more interpretive than the hard sciences. While discussion may attempt to validate that data is data which all science disciplines are required to use for proving a theory, the conclusion of the Smithsonian study clearly shows that it isn't. Remember that the 50% of published studies that were peer reviewed were eventually found to be wrong. That should shake the scientific community.

5. It allowed for consideration that a topic or study name has to be carefully chosen.

I hope that members of the editorial board come here and read the discussion.

Thanks for your cooperation

sas-schatzi

Thanks, Shep, Shetland, Meow, Falls, Exbrnxgirl. Lily and all for joining the discussion and yout thoughtful responces

april485

I saw this on another article I read on STAT (a link sent me to it) and posted it on the Femara board. I thought 111 people? Really? Not convinced it has merit with this few people. Only 88 completed it!

Moderators

Hi everyone-

We wanted to share a quote with you from one of the members of our medical advisory board, which editorial will also be adding to the article for clarification:

"Doctors and patients should not conclude that side effects are psycho-somatic based on this one small study," said Dr. Brian Wojciechowski, M.D., an oncologist who serves as Breastcancer.org's medical adviser. "It does however reinforce an idea that is very popular among my patients. Namely, that a positive outlook can be helpful in getting through these difficult treatments."

We understand the different viewpoints expressed in regards to this study, and we appreciate the feedback and discussion on this thread and others, and the messages we've gotten from some of you privately. And as always, we appreciate your commitment to this community and making sure it's a place where those discussions can happen. Thank you, all!

sas-schatzi

Mods, Thank Dr. W for his response. Hoping he takes time to review this page. Then if he would consider writing to the Oxford Journal with either the same comment or and expanded comment, it would be appreciated.

The comment area for the study is right below the abstract on the link. I'll put the link here again for ease of locating it

http://annonc.oxfordjournals.org/content/early/2016/08/02/annonc.mdw266.abstract?sid=37907078-2ddb-4bb9-837e-d4e6a55d0072

Anonymous

Dear Mods ~

In addition to requesting the removal of the article in question, I would like to request improvements to be made as to whom is consulted as an Oncology Expert. Oncologists affiliated with an NCI Designated Cancer Center would provide the most up-to-date and credible information.

To say Dr. Wojciechowski's "a positive outlook can be helpful in getting through these difficult treatments" adds insult to the original injury of the flawed study is an understatement.

There are almost 200,000 registered Members on BCO. Refer to my original post; the numbers keep rising. Cancer is destroying more and more lives. We are not hypochondriacs seeking validation. We have cancer. We are all positive we want to do more than "getting through these difficult treatments". We want to live. Pain free. Disease free. We positivly want to live positive lives.