BCO PAGE RE: Pain and Attitude

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2016

    Responding to individual media outlets regarding such BS studies is a small step. We need a big step. Large scale, attention grabbing. Something that will go viral. YouTube maybe?

    Another thought;

    Puketober is coming up.....there will be many online campaigns on social media. If we come up with a short message that we repeat over and over again we can use it to flood (hijack) those sites. Discredit the garbage and promote real research groups by name.

    Let's get creative!

  • marijen
    marijen Member Posts: 3,731
    edited September 2016

    Wow, what is behind this new push to take your medicine and don't complain?

    Whan you think about it, they could use this theory of expectations on all drugs and treatments. So why this particular cancer drug?

    The study is also posted at Medical News Today.


    shepkitty, frog study= dry humor?


  • Sara536
    Sara536 Member Posts: 7,032
    edited September 2016

    Marijen - I think you're right about following the money. I posted some stream of consciousness stuff describing my experience with Anastrozole (influenced by bad attitude of course) real-time as it was happening. I removed it almost immediately because it was so full of pain and anger and could so easily be interpreted as paranoid, even conspiracy theory stuff which would just alienate people or dissuade someone from using it who really needs it...after all, what do I know? THIS IS NOT OFFERED AS ADVICE!

    So I'm mixing it all back in:

    "Lying here in white hot pain with no let up (death by a thousand cuts) I can't move, I can't NOT move, I actually have to think about breathing. Why did I let someone do this to me? Wait! I did this to myself- I took that pill! Instead of blaming someone else, even with a foggy brain (and, yes, this is one of the SEs) I can make the decision to stop. Every muscle and every joint is saturated with burning oil. Wondering why on earth I took this last pill. Wondering if there is an antidote. Aha! maybe I can find that old tube of Estrace and rub it all over my body...probably not a good idea." So I stopped after 4 days. Side effects still linger a week later. I suspect it's possible I have permanent damage. Certainly this will be so if I continue. And no one even knows the biological mechanism by which the pain is inflicted? How can this possibly be declared safe? (Oh well, it is just mostly women who are affected - like lambs to the slaughter) I can even suspect that the drug industry has no real interest in studying the negatives of AI's because they are making so much money off the stuff as it is. They probably give kickbacks to doctors who prescribe it so I don't think I can expect honest information from my own doctor either. I don't want to try other versions of AI any more than I want to swallow hemlock or shoot myself in the leg. So this means I am making medical decisions without much trustworthy information. Maybe I shorten my life by stopping. Yes, some of the symptoms go away in 3 or 4 hours after I get up and start jumping around but I'm not willing to suffer like this every day for 10 years. Do I have my kidneys to thank for clearing it out of my body every day? Are my kidneys being destroyed in the process? Am I headed for dialysis? No one knows. And what about the liver? Just treat any problems when they arise as though they had no relationship to AI?

  • Sara536
    Sara536 Member Posts: 7,032
    edited September 2016

    The "Expectations" study is an excellent example of the Publish-or-Perish pressure run amuck

  • marijen
    marijen Member Posts: 3,731
    edited September 2016

    Sara536, I hear you. Glad you posted all that. I am here wondering, should I take the pill or not? I skipped yesterday. Interesting when I came down with breast edema after radiation, they had no problem with me stopping the letro for two months. Imagine that? I did feel less pain in my joints, it's back now. And I have trigger thumb which is a side effect. Funny it only turned up when I resumed with a new batch (prescription) from the same mfr - Roxane. I'm really tired of thinking what's causing what. And I did finally realize they aren't to blame that I had BC. I started worrying about Letrozole and the heart and found this. Very informative:


    https://toxnet.nlm.nih.gov/cgi-bin/sis/search2/r?dbs+hsdb:@term+@rn+112809-51-5

  • marijen
    marijen Member Posts: 3,731
    edited September 2016

    Say! Why don't we just expect the cancer to commit suicide? Then we won't need the dam drug

  • Sara536
    Sara536 Member Posts: 7,032
    edited September 2016
  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited September 2016

    Marijen LMAO Perfect "attitude", If that study is correct your thought should apply.

    Thank you to everyone for posting, we are making progress. This will not get resolved in a few days, or even months, maybe never. Each piece added allows for building on the next thought or action.

    Working on along post BBL.

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited September 2016

    KayB Thanks for that link. Highly appreciated.

    To All. The "Sad Face" article Daniel Engber Is a wealth of information that will be useful to us. It will take time to sort through.

    Engber referred to a 2008 study where replication studies showed fewer than half got the same results i.e. 39:100. I referenced the Smithsonian article by Brian Handwerk that discussed that study, on page one of this thread.

    Because each of these are articles about the studies, they don't have a standard bibliography as required of studies. These article types incorporate a hyperlink at a particular point in their articles that allows the reader to go to the original study.

    For those new to research, this is an accepted standard approach. I'll explain the process, then give an opinion as to how this is useful to us.

    When a study is published, it follows publication rules accepted by journals. There is a step by step method that a scientific study is done. It's referred to as the Scientific Method. Upon completion of a study, it is written in a format that is expected of all scientific publications. That allows for any reader to scrutinize the study details according to the scientific method.

    Next step, is there are articles written by journalists that in many cases spend their careers writing articles about studies. They interpret the study into lay person language. The quality of this interpretation, can rank from awful to superlative.

    A recent example of an awful article on a study, was when I was working on the Beta-Blocker thread. One person incorporated into her article a protocol for use, recommending the reader ask their physician to consider for use peri-operatively. I pretty quickly found out that a human study had not been initiated. I contacted the offending site and let them know that their employee had written a dangerous piece of information.

    . I have already found a problem with the Engber article. It took a bit to locate the link to what I expected to be the published study. But the link goes to the web page that says "unedited manuscript". So, even though Engber's article is nicely put together, it now falls into the suspect category b/c it's not actually the final document in the journal. He may have been sent an advance publication copy from Wagenmaker. Engber states " The results came out on Aug. 18th". It might be in this journals next months issue, but this is bad practice. Not published, until it's published.

    http://www.psychologicalscience.org/pdf/StrackRRR_manuscript_accepted.pdf

    But this does validate what I've been saying about studies. Always check the 1.study 2. compare the abstract to the study for accuracy. 3. Check the article for accuracy to study & abstract contents.

    Though this is a big snafu b/c truly the Wagemaker study is eventually going to be a benchmark study for the field. Just as the 2008 study is a benchmark study. It won't hurt us at the moment b/c we aren't ready to act.

    I believe that contacting some of these folks in the future will be useful with the goal of getting assistance as to how to proceed.


  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited September 2016

    I referenced three(4?) articles on page one, that demonstrates why not to trust articles without the work of looking at the studies.

    One article reported widely here and Britain about Champagne and Alzhiemers prevention was presented as fact here in the news, print and TV. Tracking it back to the source in Britain, it was a rat study. The British article was from the Sun, stated that the study on humans was expected to begin in late 2016. It was picked up by the Associated Press in the USA. Rewritten as saying it was true in humans. Whomever did the AP rewrite couldn't have track anything b/c the Sun article was clear that about what I said above. OOPS, bad reporting.

    The second article was about a study that has been out for several years. It was in re: to characteristics of conservatives and liberals. The study was cited in 49 other studies. Only recently, did a researcher in Demark identify that the original researcher had flipped the application of characteristics and the subjects. The importance of this article 1.the researcher and all the co-authors got it wrong--OOPS. 2. the peer reviewers got it wrong--OOPS. 3.then with 49 citations, it tells me none of the folks named as authors in those 49 studies actually studied the citation. OOPS. Were talking dozens of folks got it wrong. 4. all the articles got it wrong --OOPS. At that level we are talking maybe hundreds. Not good. The one person that did good is the Demark fella that picked up the error.

    We are objecting to the "attitude" study being a poorly designed study and that the results haven't been validated. Between the four above examples 1. media error with the Champagne article. 2 researcher error that invalidates the study the conservative/ liberal publication 3. Engber's preemptive reporting of an unpublished study 4. the suggestion of a "protocol" in beta- blocker where the human study hadn't been started. Example 1 & 4, are similar.

    That's why I suggest the approach of reading the study , the abstract, and the article. It likely clarifies why I was so steaming b/c I couldn't review the full study for scrutiny. Lot's of messed up work being put into the public arena.

    Hope this helps those that are new to researching. I'll bring a link on Evidence Based Research that may have some posts on it that are useful.

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited September 2016

    The only actual post from my other thread that is directly useful here is on BIAS. If we are able to get to the actual "attitude" study this will help.

    Aug 23, 2015 01:15PM , edited Aug 23, 2015 01:37PM by sas-schatzi

    In many posts here and elsewhere, I have referred to bias. Bias is the bane of research. When a study is completed and it is submitted to a journal for consideration of publication, the journal assigns (asks) professionals i.e peers in the field to review the study. The choice of the reviewer is made by level of expertise regarding that subject. The belief being that if they're is an error the knowledgeable reviewer will recognize it. The reviewer task is to look at all sections of the study for accuracy. Generally, several or more reviewers are assigned to evaluate a study. This reflects back to what I said earlier re: the internet and the explosion of information. The controls of publishing studies only after serious peer review have been weakened. Plus, people that wish to skip scientific review have learned how to do this, and publish on the internet. Making their subjects appear to fit the rules of scientific review.

    I'm happier now. I presented this better than I did before. The original thought for this post, was to find a working definition of bias that we could use. In this case, I love the internet LOL. I located a tutorial about bias that is mostly user friendly. Takes about 20 minutes to get through. Not that I expect any of us to become perfect about detecting bias, but I do believe we will be more questioning of what we are reading. It will, also, help when comparing several studies at one time.

    One of the things I do, is read the objective(opening paragraph) and the conclusion of a study, or the abstract first. This allows me to focus on the key points within the study that the authors used to come to their conclusion. I find that it helps me detect bias within the study orbetween study results that don't jive with the conclusion. Hope this helps :)

    http://familymed.uthscsa.edu/facultydevelopment/elearning/biasinresearch.htm

  • Lily55
    Lily55 Member Posts: 3,534
    edited September 2016

    Sorry to say it but I feel deeply disappointed that BC dot org published this shoddy and poorly researched report in the first place.  I thought this was meant to be a safe place where BC women could speak freely and not feel shamed or blamed......the ONE place I expected genuine support, but instead it has joined in the feeding frenzy of blame the patient - never blame the drug companies etc.........as someone who had ILC I have kept on taking one AI or another, I wanted them to be fine for me but instead I have had endless problems and my Oncologist, not known for his empathy, told me 85% of women have significant side effects from AI´s but never mind keep taking them...........so 85% of women expect problems apparently - total b-----ks!

    I am truly incensed about this.........patient shaming and a support site joins in!  Like this is not enough of a crap shoot as it is......................

  • Meow13
    Meow13 Member Posts: 4,859
    edited September 2016

    Patient shaming is contemptible. Just listen to the BCO sister's stories the treatment agony and how committed to beating cancer we are. You know what they can do with attitude and healthy lifestyles. We did not cause our cancers and we arent a bunch of side effect complainers. Cancer is dangerous and so is the treatment.

  • Sara536
    Sara536 Member Posts: 7,032
    edited September 2016

    The ''Sad Face'' article referenced by kayb is hilarious. I'm so glad I can count on this site for a good laugh once in a while. Better than pain killers any day

  • Lily55
    Lily55 Member Posts: 3,534
    edited September 2016

    And I want to know why BCO did not speak up for us as our advocates?

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited September 2016

    Hi, we now have three articles and several studies that show these soft science articles and studies have a serious problem with validating results by repeat studies. Keep them coming. Before too long I will make two posts

    1. consolidating studies that point out the weakness of the peer review/publication process into one box. Future studies will be added too the same box aa a central source. So, that anyone wanting to review the subject can go to one box and all the material is in one location.

    2. consolidating the disreputable/questionable/ failed studies into one box with a statement(something) that defines there problem.

    I'll link two existing threads, that show how these future post boxes may look. Remember we have a work in progress. Ideas how to use the info will develop. But we are still in the info gathering phase. Please, continue to Gather and comment :)

    If you look the two linked threads from a construction viewpoint, it may help to visualize and endpoint.

    This link is to a toradol thread. If you look at them from a construction standpoint. The links define how to use it. It's very busy LOL. It consolidates all the research links in to one box, AND the three many related threads are linked. This box and the many related threads will be useful for a very long time.

    https://community.breastcancer.org/forum/73/topics...

    This thread is defined a central starting point, the topic box describes how it's used. It's included in the surgery template that is transferred each month as surgery threads are started.

    https://community.breastcancer.org/forum/73/topics/843381?page=1#idx_11


  • Meow13
    Meow13 Member Posts: 4,859
    edited September 2016

    Mask your pain with a smile. Really

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2016

    The media and the preference for sensationalism over information has become rampant. Researchers can skew information to fit their needs in scientific reports. What a mess

    Did anyone catch the big flossing exposé published by the AP last month?

    Medical benefits of dental floss unproven

    To the credit of the author, he did post the links to studies he referenced.

    Other news outlets picked up the story and reprinted it with varying headlines announcing that flossing was pretty much a scam.

    Snopes did an excellent examination of the AP's story with an in-depth explanation on how the actual studies were limited and unable to prove any real useful information.

    Flossing Isn't Backed by Science?

    "The problem lies in the way flossing is studied, and in the requirements of the federal governments' Institutional Review Boards, which hew to (and recommend) a specific set of scientific standards to make recommendations"

    Soooo......

    Before one takes as true fact, any report of a new study, one needs to fully investigate all the relevant information upon which the facts were based.

    Ain't nobody got time for that!

    (I'm a cancer patient damn it! Not a research scientist!)

    Very, very frustrating..............



  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2016

    Meow ~ anyone who truly "knows" me in real life knows to duck and cover if I start to speak with a big smile on my face! 😈


  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited September 2016

    Shep LOl What's the phrase that southerns use? Sweet darling............???? There's something better'n that :)

    I do agree with your statement " Before one takes as true fact, any report of a new study, one needs to fully investigate all the relevant information upon which the facts were based."

    I disagree with " Ain't nobody got time for that!". We have science geeks here. LOL. That's what this thread is all about, in the science forum. I suggested the forum a long time ago, when someone objected to me placing to much science stuff on a thread. What oddly happened is the Mods didn't tell me they did it. I didn't find it for awhile. I thought it so funny, from an ironic point of view.

    We need non-geeks and geeks, to accomplish what we need to do in the end.......So, if you are a non-geek and hesitating about posting. Don't hesitate. Please, don't hesitate- POST. Each objection to a bad article has value.

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited June 2017
  • solfeo
    solfeo Member Posts: 838
    edited June 2018
    I was one who anticipated horrible side effects from tamoxifen. I was so scared to take it I let it sit on my desk for almost a month before I could bring myself to try it. Turned out I tolerated it very well. Clearly my attitude didn't create symptoms that were not there, but my perception did play a role. The mild side effects I have are so much more tolerable than what I had built up in my head that I ended up feeling blessed by the little annoyances I do have to live with. Who knows what would have happened if I had gone into it expecting zero side effects, but it's possible that I could feel quite differently about the minor problems that I now appreciate.

    I can see how someone who anticipates horrible symptoms and then ends up actually having them (who cares what the reason is, the pain is real) could feel worse about their situation than someone who goes into it with no preconceived notions and processing their actual experience only for what it is worth. That whole idea of your worst nightmare coming true piles onto the negative reality of the situation.

    I think there is a way to acknowledge that perception matters without going to the extreme of blaming the victim. I believe this because I have changed my thinking about just about everything in my life since the DX, and as a result of those adjustments in attitude my life is indeed objectively different.
  • Momine
    Momine Member Posts: 7,859
    edited June 2017

    The idea being "popular" among dr. W's patients is no reason to endorse it.

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited June 2017

    Momine, what does your response refer too? It went over my head

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited June 2017

    I think Momine must be referring to a September 1, 2016 post by Moderators on this thread. Good point, Momine.

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited July 2017

    Thanks Shetland :)


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