BCO PAGE RE: Pain and Attitude
Comments
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Really Dr. Wojciechowski?
"detecting cancer earlier can allow more women to avoid aggressive treatments like mastectomy (and keep their breast), radiation and chemotherapy"
" Many women do not know that excessive alcohol, hormone use (such as birth control and hormone replacement therapy), having children later in life, and not breastfeeding increase the risk of breast cancer"
"Obesity is a big factor. Women who are overweight not only have a higher risk of breast cancer but have a poorer prognosis after they are diagnosed. Prevention is where you get the most bang for your buck!"
"We are curing most women with breast cancer; most get to keep their breasts and avoid chemotherapy, partly as a result of 'pinkification."
"For women who are un- or under-insured, there are SO MANY donated funds that you need not worry about getting medication paid for"
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Shep, nicely put.........
Mods , again encouraging Dr. W to come here and read. Not sure how likely he has had contact with women that are as frank as we are. It would be interesting to hear his reaction. I've never seen him post on any of the threads, so, I realize it's an unusual request. But not out of bounds.
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Hi Mods, I very much appreciate how you and Dr W have cooperated in this discussion. But now we have to think how to change the 'domain' (world). I posted this on the Hormonal threads. It may or may not get crowded here.
Frankly, I believe we need a plan on how to counter this study. I know changing the world can seem pretty far fetched, but having done it a few times, I know it's possible. This was the post on Tamox, Arimidex, Aromasin, and Femara
"Hi, folks thought some may want to come and join the discussion. The mods did take action and change the title of the Attitude main board study (same study as April's link). The BCO medical Advisor is going to post a statement. The Mods have posted what that statement will look like. You can find it in their response.
We have a dialogue going.
I think the importance of this is that we can have an impact on discrediting this article not just here, but in the "domain"(world). This very irresponsible study, is out in the world now. It will be quoted forever by docs, church members, nurses, family, and friends. It's being used in all manner of publications going out to the public. It will be cited in many teaching pages and incorporated into other studies. It will be causing trouble for years.
If you think it's an exaggeration. Think margarine. It was promulgated as a better alternative to butter by the American Heart Association in the 1970's. Then the problem of trans-fatty acids was identified. It was known in the research/ medical community to be a problem for years before it was corrected to the public. The research in the 70's wasn't solid, yet caused decades of problems. There are many more that I could cite, but don't want to belabor the point.
So, join us
Not sure how we will change the "domain", but it's a work in progresshttps://community.breastcancer.org/forum/73/topics/847566?page=1
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Well I had a very positive attitude starting on anastrozole. I took it for 7 months and for a long time thought it was side effects from radiation making me feel so bad until my MO gave me a 3 week vacation from the drug. I had bone pain, joint pain, headaches, I was tired all the time, my legs felt like they had lead in them and I just felt like crap and it got worse every week. Oh and the worst SE? I was so lost and forgetful I thought I was developing very rapidly early onset Alzheimers. It scared me to death. I am on exemestane now. So far I am only having mild hot flashes. No other symptoms. So I did not go into this with a negative frame of mind.
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I, too, had an extremely positive attitude towards Femara and did very well on it for the first 18 or so months. I was at a loss when I started experiencing various symptoms which my MO deduced were related to Femara. I didn't want her to be right, frankly. But since they've subsided with a short break from treatment and a switch to Exemestane, I grudgingly accept that she's probably correct.
I know many women dread and despise AI treatment; I am not one of them and I suspect there are many others out there who feel the same.
However, at the most basic level, my biggest quibble with this study, and the publication of it, is the extremely small sampling. I really doubt there's any statistical validity, frankly.
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hi sas- schatzi. Thanks for taking this up. I felt insulted and demeaned by that report. As i have posted elsewhere, i sailed through surgery and rads and expected to do the same with a.i.s. I was knocked sideways by the side effects. I was switched to tamoxifen and began it with some trepidation. I am fine with it. That is the kind of report we can really do without.
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Thanks, folks for posting. We can make change. WE CAN. It's important for those that are lurking to tell their stories. They are anecdotal stories. BUT when anecdotal stories builds to a pressure point, just like a pipe it will burst. We can then use the anecdotal to cause a change. Not sure how yet, time will tell us what direction to go.
Each story is important.
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Folks on a mission. Nothing has so pissed me off in years. Actually, I would have to work on remembering something as egregious as this drivel study. I posted this on the first page. It won't be the last time it's seen. I believe it should become our mantra against the stupidity of bad science. Going to add it to the topic box.
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.
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I had a very positive attitude - esp about tamoxifen because I was an extensive metabolizer - but then I was diagnosed with endometrial cancer - so what did my positivity get me???
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I,too wanted AI drugs and tried very hard to stay on them to prevent recurrence. I think my attitude was just fine. Always looking to criticise the victim. My health was good, exercised everyday, no smoking or drinking. My BMI was 21.5. There was nothing looking back I could have done to prevent this disease. Bad Luck that was it.
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Ok,I am going to rear my "ugly head" here...but will try to make it sunccint
I lived in Germany...long story short....sucking it up is a way of life.....never complain, never explain may have been said by the well known Italian, Lee Iacocca, but I found most people in Germany to zip it when suffering....of course it's all in your head, right?
How do these researchers know if, by chance someone might carry the HLA B-27 gene that "can"pre- dispose you to RA? Perhaps the ladies AND gents who have a predisposition to arthritis type condition(s) might just have more SE than those who have no such genetic tendencies .
Another option....arthritis can be brought on by infectious agents which can be held in check via a healthy immune system, henceforth you may have never known that you contacted Lyme Disease, RMSF, Mycoplasma infections and a whole host of other low grade, latent infections which are implicated in arthritis type conditions.....could it not be "possible" that those who are already dealing with such latent pathogens just "might" have more joint pain and bone issues on a AI than those with no such pathogen load.
And now, my story...short and to the point: pre menopause I could not use a SERM due to the genetic clotting disorder Factor V Lieden. Post menopausal I gave an AI a try, since it is stated in most studies that they do not adversely affect the clotting cascade in the body. Well, guess what? Three weeks after starting TX. I ended up in the ER with cramps in both legs so severe the attending MD was sure that I had DVT's! My dDimer testing suggested as much.....luckily I did not, but the INR ( international ratio) had dropped below a one( one is the norm) so I was started on blood thinners, and bridged over to Lovenox injections. I have found the occasional "rogue study"that does suggest a slight chance of a stroke on AI's.......sure, not the norm.....but, we are not one size fits all.....and my unfortunate event is certainly not one the medical profession can "write off" as a pre- conditioned bad attitude.
I never had a clotting episode before nor after that event...Before I discovered that I was FVL positive, I had had Indwelling ports and Picc lines for infections...never an issue. Took vitamin K daily, never an issue, ate greens like crazy ( big juicing fan) never an issue.Hemotologist says it's the drug. At least for me, that's the case
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Sas-Schatzi: Thank you for your efforts here. Putting that article here legitimizes and mainstreams what appears to me to be at best poorly researched science and at worst, sexist, perhaps even mysogonistic or fraudulent research. I am both angry and very disappointed in this site, which has (to date for me) been very helpful . Keep up your fight. Someone could research the study authors and find out more of their background, what they have published previously, etc. How many are women? Until there are equal numbers or a majority of women conducting and publishing cancer research and making hiriing decisions at medical cneters, practices, hospitals, etc. I am highly suspicious of any study--even a large one, and especially such a small one, that involves non-objective "scientific" assessment--such as assessing "attitude" is. Too many opportunities for explicit and implicit bias to creep into every aspect, too many opportunities for prejudice, and too many opportunities for social control and attempted cost reduction of medical treatment at the expense of women, once again.
I agree that correcting this flawed study's thesis is key, and soon. In today's modern media world, what isn't countered immediately becomes the prevailing "fact". This is incredibly important; you are 100% correct that its impact can be huge, long lasting, and obviously very, very damaging. I am terribly disheartened, or, alternatively, quite angry. Or both.
Moderators/Baord: Figure it out, or maybe ask your lawyers. From this site, I expect more .
Solid vetting of what is posted is what I expect, particularly when vague and subjective things like "attitude" are being made into pseudo-science. And particularly when one is dealing with a disease that affects only women and predominately male researchers are involved in a study. What was and is still often said and felt: 'Kirche, Kuchen, und Kinder" [Church, Kitchen, Children: what German/Swiss women are supposed to be doing...still a very common attitude, and a very sexist one at that, and obviously not exclusive to German speaking countries.]
What next? That if we only try to "feel" cool, we won't experience hot flashes...or climate change? Is the bone loss of AI drugs affected by "positive thinking"? Really? Why not? If yes, then gosh darn! We had better figure this out so our thinking can reverse bone loss for everyone! No more zoledronic acid needed! No more broken bones for us!
Women's physical complaints have been dismissed, ignored, and discounted, for centuries--especially ones that cannot be seen--, to the detriment and death of millions of women. "Hysteria", "High strung", "nervous complaints", " in her head"...... Any woman or girl with an autoimmune illness can tell you this--being believed is 90% of the battle, and it makes the process of treatment and diagnosis so terribly difficult and disheartening.
Mens' invisible symptoms are believed and addressed, and womens' are not.
Given the history of treating womens' real medical problems as "hysteria", etc., I feel that posting this weak study is a microaggression, if not more, against all of us on these AI drugs. Please delete it, or place an explanation of its limitations, etc. in perhaps as sort of "Black Box Warning" label so that anyone who reads it here doesn't take it as definitive. That would be wrong, and dangerous to all of us.
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BCO could publish photos of my hands and the arthritic deformity that occurred a month into AIs.
I went to a retreat for BC survivors There were about 30 of us. 1/2 had trigger fingers from AIs
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Please, those lurking, your posts are important to be heard.
Thank you to all that have posted.
I've left of my negative report of AI exposure for a reason, that will eventually be explained.
The key here is "our voices " must be heard. I have been reading scientific studies since the 1970's. I have followed several areas of first interest i.e. cardiovascular and many system drugs, and then other areas as pure recreational reading i.e CYP450 liver metabolism since the early 1990's. CYP450 may seem odd, but I knew it was the future.There are others.
What I learned early is bias in a study was a danger. Peer review was developed early in the publishing of studies. Not sure when the modern peer review process started, I didn't research it. I do know that the scientific method step process was defined in the late 1940's That is the process that all research after that time must adhere to. When I can bring a report from the Smithsonian that 50% of psychology studies can't be reproduced, that screams of distrust of any value placed on publications of that Discipline. Which using the word discipline implies a codified ethics, DUH a 50% failure rate, shows they have no codified ethics for the science.
As a pervious poster pointed out, researching the folks that lended there names to this drivel need to be researched for their history of publishing. I will add how many had their publications were pulled because they were found to be erroneous or had to write errata's?
To find the Smithsonian article, I googled keywords "how many psychology studies have errata" The Smithsonian was the strongest article and I was flaming. BUT sometime in the recent past(<10 years), on a Saturday, listening to the radio, a similar statement was made about the psychology community was made. It was several years ago. It identified much the same. As I sat in the car driving as a passenger on a sunny day in Florida, I said it will be huge, it will rock that community. Never heard another thing in the press. It was buried. I was hoping the search would have brought the scandal forward. Perhaps, a further search will bring it forward.
We cannot make change without the willingness to come forward
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The study has some fundamental flaws, including the fact that AI's can in fact cause dizziness and back pain, symptoms which were claimed to be unrelated to hormonal therapy. A search on drugs.com indicate that the following are side effects of letrozole:
Back, leg, or arm pain; breast pain; constipation; cough; diarrhea; dizziness; headache; hot flashes; flushing; increased sweating; indigestion; joint or muscle pain; loss of appetite; mild swelling or fluid retention; nausea; night sweats; sleeplessness; stomach pain; tiredness; vaginal dryness or irritation; vomiting; weakness; weight gain or loss.
From: https://www.drugs.com/cdi/letrozole.html
This fact alone renders the study results suspect.
That said, given the recognized power of the placebo effect, there's no reason to doubt the flipside influence of the nocebo effect.
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My MO is very straightforward and discusses the pros and cons of medications and treatments very clearly. While on Tamoxifen, I was advised to avoid being sedentary as there was an increased risk of blood clots. I was told to get regular eye examines because of the the increased risk of cataracts. I was also warned of an increased risk of uterine cancers developing. My MO told me I would be able to gauge how well the Tamoxifen was working by how lousy I felt. Hot flashes, night sweats, bone pain, fatigue.....
Two years of misery on tamoxifen, then I had a new cancerous node pop up. I was switched to Femara and almost immediately lost 16 pounds of Tamoxifen weight. I could once again wear my wedding and engagement rings. Tamoxifen had bloated me up horrifically. I am petite, with a low BMI and eat healthily and sparingly. I have never had problems with being over weight. The hot flashes eased a little and there are less drenching night sweats now.
My MO had given me all the precautions about Femara. Bone and muscle pain has been consistently overwhelming. I have extensive bone mets; I don't think the AI has added to my discomfort but I can't be sure. I do know bone thinning and osteoporosis are major concerns with Femara. I started receiving infusions of Zometa after being Dx'd. Hope it helps. Fatigue and short term memory loss plague me daily now.
I receive treatment from an NCI Designated Cancer Center. My team is part of a medical university that is a leader in cancer research. My doctors are all highly respected and published.
Not one time have I ever been told that my attitude was an influence on my side effects. Being Stage IV de Novo, I am positive that I want my medications and treatments to work! If the SEs associated with hormonal therapies are psychosomatic, what was the point of my MO discussing them?
Not every patient has a communicative doctor. Many patients are not able to do research for themselves. Promoting inaccurate studies as fact is very, very dangerous. Lives are at risk when the symptoms of a blood clot, stroke, heart attack or other serious condition are ignored.
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Listed side effects of hormonal therapies:
and.....
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OH Shep, my friend, not only are we off on an "attitude", we are off on a government documentation problem. I went to Dailymed which is a government site for meds. When it was introduced, I was in a nirivhana (sic) world. It posted the first drug company that did the trials originally as the first drug. Which made checking an individual easier. Reference point, I reviewed a members drugs with her that showed she had 3 side effects to her drugs that were 1:1000. Since changed to other drugs lower s.e's
The first company that produced a drug had to keep all data related to trials. Then as I said, the site changed, it no longer kept the originally licensed drug as the first drug.
I have seen how this site has evolved, it now SUCKS. Not that I didn't see it was evolving and going from a superlative drug access site to a "WTF" site where did all the info go. I looked at your links. The BCO link first. My reaction was--Chit. I went to Daily med. Data's --gone .. Serious, go there. IT is the next windmill. Damn. When I first found the web site I thought I was in a PDR. Then it was improved. I didn't link the improvements, but they didn't hide information. I go there today. It's awful. AWFUL. Lot's of information hidden with no way to access it. No longer a dependable site.
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Shep BTW the link that you posted for BCO can not be considered accurate because the GOVERNMENT site doesn't show it.......................So happy you posted that link b/c it caused me to find out how my gov link has changed.....This is getting into the real zone of lack of truth. .
The pissed level is going higher.
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Hmmm long post isn't here..................
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Keep the posts coming some great points made here.
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So could this be a follow the money situation? Are the AI side effects complaints stacking up? Are the drug companies trying to increase usage, i.e. more dollars? Sas, do you have the percentages on the efficacy of these AIs? Are they worth it? Why don't the the sides include the brain? The brain needs estrogen to function. Are my questions out there? Why do they lie to us? I'm beginning to think these drugs are worthless in the long term
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Me too, it all seems like a crap shoot. First 5 years now many are saying 10. I'm done trying to use AI drugs for recurrence. If my cancer returns I'll deal with it then.
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The most comprehensive information on medications can be found on the FDA website or on the Merk Manual Professional website.
The validity of hormonal therapy is not what is at issue. The issue is the validity of studies that trivialize the very real side effects of hormonal therapy. Our experiences have been shared in this discussion to emphasise how foolish the "positive attitude" study was.
The propagation of ignorance and misinformation regarding Breast Cancer affects us all. We have rallied together to work towards the elimination of this flawed study being promoted as fact. Unfortunately there are many, many more such studies that are also promoted (here and elsewhere) as fact.
Sas is right. This is important. We have the power to initiate change. How awesome would it be to join together and make our voices heard to assure responsible publication and promotion of ALL studies concerning Breast Cancer? So, so many people beleive everything they read. Let's work together to make sure what is read is true. We deserve to be treated with respect and compassion. We shouldn't have to fight for that - We have to though. For ourselves, our mothers, sisters, daughters, our loved ones and for all those that will be diagnosed after us.
Ideas anyone?
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I can't help but to think of this old joke about how facts can be misconstued :
A scientist is conducting an experiment to determine whether frogs can follow simple commands. He begins with a healthy, four-legged frog, and says, "Jump, frog, jump!"
Right on command, the frog jumps.
He then cuts off one of the frog's legs and repeats his command. Although somewhat hobbled, the frog complies and jumps.
The scientist cuts off another leg and instructs the frog to jump again. The frog does as well as it can, but only budges a few inches after belly flopping onto his two remaining legs. After the frog loses its third leg and is instructed to hop yet again, the poor amphibian struggles, but heroically moves a few centimeters forward.
Finally, the scientist cuts off the frog's final leg. Again, he issues his command: "Jump, frog, jump!"
The frog doesn't move. The scientist barks his command again: "Jump, frog, jump!" The frog remains motionless.
The scientist finally opens his notebook to record the results of his experiment: "When frog loses fourth leg, frog goes deaf." -
All I can say is that there strengh in numbers. If enough people bawk at these ridiculous insulting so called studies maybe we can have some effect.
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I really can't see how cutting off a frog's legs proves that a frog can follow instructions. What a stupid study. Maybe some scientists are unqualified to do studies.
*this is a joke!
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marijen,
Shepkity said the frog study, was an old joke, not an actual study.
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Ahh Marijen ..... You got it! 😎
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Meow yes! We must use our numbers to protest the spreading of this junk science.
Doing a search on Google News shows these results;
Expecting the worst increases side-effects in breast cancer patients on hormone therapies
Science Daily - Aug 22, 2016
At the start of the trial nine patients (8%) said they expected no side-effects from adjuvant hormone treatment; 70 patients (63%) said they expected mild side-effects, and 32 patients (29%) expected moderate to severe side-effects. After three months ...
Cancer: Patients' poor outlook increases side-effects in patients undergoinghormone therapies
International Business Times UK - Aug 22, 2016
A new study of women who received hormone therapies as part of their breast cancer treatment has found that the number and seriousness of side-effects they experienced were influenced by their expectations. The research published in the journal Annals ...
Breast cancer patients who 'fear the worst' suffer more severe bouts of vomiting, hot flushes and headaches during ...Daily Mail - Aug 22, 2016The intensity and frequency of side effects from taking hormone therapy drugs such as tamoxifen and exemestane for two years was influenced by patients' expectations, researchers found. When patients expected to suffer before treatment began, they ...
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