Negative thoughts: does it influence se's of hormonal therapy?

I heard about this. I was a bit perturbed by it. I went into my first Tamoxifen experience expecting the best, since I had never really had major SE from meds. Instead I had many SE on it and the AIs that were not caused by my negative thoughts. I feel like this study perpetuates the "it's all in your head" mentality.

I found this study interesting, but there is no reason to come to a firm conclusion based on this. I, too, expected no problems with Tamoxifen. I typically have no trouble with meds. I ended up with a huge number of very bad SEs, except for the one I actually expected to have - hot flashes. I'm still a bit surprised my body reacted the way it did.

This isn't to say that I discount the power of the mind, not at all. I'm a firm believer in the power of positive thinking. It just didn't help me in this situation.

Hi everyone. Perturbed that they would even do a study like this! I wonder if it would have been done on a male dominated disease! Never mentioned why these women had negative expectations. Was it because they don't do well on medication in general? Was it because they didn't do well with menopause? Was it because they have pre breast cancer medical conditions? Let's just say it's all in our heads and not tell us what the SE could be? Just ridiculous that this is what they are spending their money on! How about better treatment options, prevention, and yes a cure? Now that would be worth studying.....PS that being said IMO a positive attitude is always the way to go in life

I'm reading Dr. Dispenza's book "You Are The Placebo" right now. It takes several chapters to explain the mechanism of placebos and nocebos (when your mental state creates harm). I heartily recommend it.

I'm still slogging through all the science, but the end of the book has chapters on using a meditative trance to enhance wellness. The author openly says that he used these techniques to heal a fractured spine when four doctors told him he needed surgery to stabilize his vertebra. Since the surgery might have resulted in permanent paralysis, and he was in his early twenties at the time, he refused it. Instead he lay in bed meditating for several months, and healed.

He stresses the point that this is not about positive thinking, it is about using thought and emotion while in a theta brain wave state to rewire the brain, to turn on genetic expression of cells, to create a health state. Those studies where people healed by placebo showed that the human brain can create its own medicine - oxytocins for pain control being one example.

He does a decent job explaining the process in this interview.

I can see this both ways. My first instinct is to run from anyone that says its all in your head. I believe it is not. However, I could see with these drugs that if you're not expecting them to cause issues, you can attribute the symptoms to other things - such as menopause, arthritis, etc.

Being on anastrazole, I've had some achiness, hot flashes. I was never sure if it was related to the drug or chemo, being shot into menopause with lupron, exercising 6 to 7 hours a week, prior arthritis... Maybe my brain doesn't notice because I'm highly motivated to take this after a recurrence. I also think exercising so much makes my brain think I'm an athlete, not a BC patient, which totally changes how you see aches and pains.

I find the mind/body connection to be interesting. I do believe there is a definite connection (the well studied "placebo effect" seems to prove that) but as others wrote this is a pretty small study and lots of things may come into play besides expectations of side effects equaling side effects-correlation does not equal causation.

Perhaps the women who expected side effects knew from past experience they were extra sensitive to drugs in a general way or to fluctuations in hormones based on previous experience (PMS or bad reaction to BC pills). They might reasonably expect to have more problems with endocrine therapy.

Sort of like if you ask kids if they think they will do well or poorly on a test and those who say they think they will do poorly, actually do do poorly. Is this because they expected to do poorly and thus did so (the self-fulfilling prophecy)? Or did they say they expected to do poorly because they knew they had not studied, were not prepared, or suffer from test anxiety which in the past as negatively impacted their grade (so the bad grade was not result of negative thinking, but of failure to prepare for the test, etc.)?

Awfully hard to sort out this mind/body business, but interesting nonetheless.

Interesting how we all got something different from the study. I still say money could be better spent on improving our QOL with better treatment options. Let us not forget that almost 50 percent of us do not complete the recommended 5 years on anti hormone treatment due to SE. A fact that was substantiated by my MO at a major NYC university based teaching hospital. Addressing the mind over matter issue IMO should be at the bottom of the list! Good luck to all....

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.

Anyone curious about the societal standards applied to groups?

BTW, unless a full study is open to full review, no conclusions should be drawn from the abstract of the study.

I went into my course of letrozole without any pre-conceived ideas, except that it was more efficacious than tamoxifen. I did extremely well on it for about 18 months. Then bam! - out of the blue I started experiencing a cascade of side effects. I was very reluctant to attribute them to letrozole. However, my MO pretty strongly suggested a change to another AI and the worst symptoms are subsiding quickly, despite my expectation that it would make any difference. I guess it's a good thing I wasn't part of the very small number of women recruited for the German study!

I do feel that BCO's headline, and similar news stories around the world implying that it's all in our heads will do untold damage.

Marie, that was such a great post

Bronxgirl, naw you were just bringing it forward for discussion. Glad you did. I am still off on a steam b/c it was bad science. I could go on forever why. But it wouldn't matter. But I will continue my pontificating on my thread. Hope I didn't offend anyone here. Come to my thread and let me offend there LOL.

Joking, I just haven't been so offended by bad science in about a couple of weeks, but this is seriously the most offending, ridiculous, piece of drivel. Again it's now out in the domain. How many women will receive copies of this stupid article in their email from well meaning friends that have no clue it's bad science.

Dtad is quite right.

TwoHobbies, your statement about how your brain sees aches and pains is a valid one in a general sense, but please remember that many of us did NOT experience "aches and pains" as a significant SE. I have been a regular exerciser nearly my entire life and I enjoy the aches and pains that come with physical exertion (i.e. 80 mile bike rides, 10 mile runs, etc). Tamoxifen did cause me pain, but only tailbone pain, which I didn't even realize could be an SE until I later read it on here (I kept thinking I must have hurt it somehow), and the severe pain I experienced when my rapidly-forming ovarian cysts ruptured. I have never before nor since suffered from ovarian cysts. All of my other SEs were not pain-related, but were very significant nonetheless.