Rejecting hormone therapy
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Hi VioletKali....this sure does help and I am right there with you if I cannot tolerate the AIs. May I ask what manufacturer/brand of the DIM you are buying?
I know NOW, Thorne, Life Extension, and some others are good brands. Breast Defend has the Mushroom in it, quite expensive and I think it is by
Euchgenics or something like that. Thanks for your info!!
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I don't do mushroom supplement because they have a similar action to DIM. I just do a strong dose of DIM.
I use the Nutricost brand I get on Amazon for 19.99. I doubt going for the super high priced crap will make any difference.
For reference, I am also a DNR. No tube feedings, I have advanced directives, etc. I just want to live my life in relative peace. I am not afraid of dying, I am afraid of living poorly. I refuse to do that.
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Thank you Violetkali. I will look at that brand. So many DIM products out there. Mushroom extract is always being touted as also being of benefit. And, on the rest of your post...I am absolutely with you on QOL.
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Another one bites the dust, and I'm switching to Aromasin. I have high hopes for this one!
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VioletKali, what is DNR? I have asked my family as well that when the time comes I don't want to live with feeding tubes, etc.
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LillyIsHere,
DNR is Do Not Resuscitate.
Telling your family is good but everyone should have a legal healthcare directive that documents their wishes.
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Thank you Beesie. I have told my DH since he is the only family I have but considering his personality, I know he will try to keep me alive with every possible means as he did with his parents. This is scary for me. He is an optimist who thinks if you are breathing, you have a chance to get better.
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LillyisHere - I work in guardianship so come into contact with the concept of DNR fairly often. I know it in the context of a POLST form; something we can all have to let doctors know how to manage any end of life situation that might come up. The term DNR can be confusing and it might even mean different things in different jurisdictions/medical systems. My understanding is that you can opt to be DNR, but still receive tube feedings, antibiotics, etc. even if your situation looks very grim. The only time DNR goes into effect is if your heart completely stops and you are considered "dead". Then the fact that you are DNR will kick in and they will not attempt to resuscitate you. Even if you are DNR and you are at death's door, but your heart has not actually stopped, you can be given tube feedings, and more in an effort to see if you will improve. Usually at that time though, the doctors will have a conversation with any relevant people (significant others, spouse, guardian, POA, etc) to see if what you opted for on your POLST form should be changed, i.e. they can make a decision to not do tube feeding and just "let you go" if anyone with decision making authority, after consultation with a doctor decides that it would be either what you would want, or in your best interest (assuming what you would want cannot be otherwise ascertained).
I think what this means in your case, Lilly, is that if you expressed a desire in a document to be DNR, they would still attempt life saving measures unless your heart actually stopped. Also, if you were declared incapacitated, or you had delegated decision making power to someone like your spouse, and you were say, unconscious, that person could make an ultimate decision after consulting with a doctor. If they substitute their own world view in spite of what you've said you would want, you will likely get the life saving treatment; at least a trial of such treatment. If they know that you would not want the life saving treatment under any circumstances and want you to have what you want, they will make that decision in accordance with your wishes.
It can be very confusing unfortunately. Hope this is of some help.
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I really appreciate your thoroughness and knowledge of the situation I'm in. I'm 61 years old, and for reference I was taking only progesterone and human growth hormone prior to my cancer diagnosis as part of my hormone replacement therapy. That's just on background, but from what I'm reading HGH is closely linked to certain breast cancers in pre-menopausal women and possibly to the aggressiveness of breast cancer in post menopausal women.
Let me give you a real world view of what's happening to me, and around me that makes it impossible for me to have any substantive conversations (even though I work for a healthcare based non profit with a doctor on staff); there is zero dialogue between myself and oncologist and no options where I'm living in Prescott AZ where capacity issues in the medical profession are showing up in crazy numbers i.e. I cannot get a PCP here in Prescott as non are taking new patients (we moved here two months prior to my diagnosis from Bend Oregon which had more options) which has left me to do all the research. Although you are filling in the data and research gaps very accurately, I don't think I've conveyed my personal situation well and I'm a bit confused as to why you don't respond with a bit more empathy to the emotional side effects that many women experience with the aromatase inhibitors so I'm going to tell you exactly what's been happening even though it doesn't probably fit with any medical paradigm you are familiar with.
In 2006, in the Napa Valley where I lived for a long time with my husband of 30 years who is an internationally known wine expert and chef; I was violently sexually assaulted. It was, according to police, attempted rape and attempted murder. My attacker was never caught and was wearing a black ski mask so a positive identification was difficult. I was subsequently diagnosed with PTSD and am still in treatment for it. Did you know that there are clinical trials that have been done on the AI's that specifically exclude anyone with a prior mental health diagnosis? If you are in the industry, as it sounds like you are; you know this to be true. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC70986... There is your citation. The title of the study is
Quality of life and psychological functioning in postmenopausal women undergoing aromatase inhibitor treatment for early breast cancer
And yet they excluded anyone with a previous psychiatric diagnosis from the trial. Here is the paragraph with the exclusions: "Exclusion criteria were: known neurological or psychiatric diseases, according to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) criteria [48] which could interfere with the study; previous bone fractures; previous cancer; autoimmune and endocrine diseases; cardiovascular, respiratory, liver or kidney failures; psychopharmacological therapy and use of steroid, hormone treatment or any active bone agents; already started adjuvant aromatase inhibitor administration."
When a pharmaceutical company or other vested interest does a clinical trial and excludes a certain population of people, there is in my opinion and from my experience in the healthcare field a specific reason they are excluding them. In this case I believe they knew there were going to be a high number of "lost to treatment and followup" cases" so they excluded them which results in better outcomes of the trial. There are tamoxifen trials that also excluded those with any known/diagnosed mental health issues. Not going to cite that, don't have time, but I'm sure you are aware and if not I'm sure you will mention it.
All of that said, I have tried anastrozole (one week total disaster mentally and physically) exemestane generic (took for 3 weeks successfully, then had sudden suicidal thoughts which I've never had before) then switched to Aromisen Brand, again 3 weeks was fine then suicidal thoughts and complete breakdown, then letrozole for 3 weeks and last Saturday had to stop due to suicidal ideations. So now my only option is taking Tamoxifen (endometrial cancer runs in my family as do strokes, and several tamoxifen trials aimed at different markers and results excluded those with any pre-existing mental health conditions...so I may be beginning tamoxifen and again may have the same reaction and be left not able to take anything and try to get behind qualify of life.
The really interesting thing that my insurance company, Anthem BCBS has shared with me (a pharmacist on their staff) is that they have information not available to the public that shows them unique side effects and also information on "compliance" that totally differs than the US protocols. Ex: In the UK compliance for AI's is 6 days a week, not 7. But in the US compliance is 7 days a week. If you are "elderly" in the UK and show toxicity taking the AI's daily, they have had great results having them take the AI's every other day once toxicity is established and those elderly patients appear to get the same level of protection as younger patients able to tolerate the AI's daily. I AM NOT SUGGESTING ANYONE ELSE TAKE THIS AS ADVICE OR GUIDANCE, this is me exploring how I might be able to continue taking any one of these medications and not have these destabilizing psychiatric events. Period. Full Stop.
I'm exhausted at this point and just trying to figure out my next best steps. Do I just stop everything in favor of quality of life since I cannot get a PCP to oversee my healthcare? Do I take this into my own hands and try to take these meds against medical advice on a different schedule in hopes that I don't have some sort of psychotic break? Do I go with Tamoxifen in hopes that I don't have a stroke or blood clot that kills me and that I don't have psychiatric issues? No one can answer that question but me. But I would not want other women to feel alone if they are experiencing these symptoms and have no where to turn. COVID 19 has created a paucity of medical care in a whole host of communities around the country. I know I'm not alone. I also know that the percentages of women lost to follow up are far higher than we know due to the exclusions in many of the clinical trials so it's a crap shoot as to what my odds are.
In a perfect world, I would be able to make an apples to apples comparison of women with my exact type of cancer, my BMI, my diet which excludes any sugar and simple carbohydrates for the last 25 years, I have breast implants (saline) to which my one BC tumor was attached and I wonder if that has anything to do with my developing BC as there is some information indicating it might, I get exercise, am fastidious about my health hygiene etc. which I find baffling that I got cancer...but my mom had BC and endometrial cancer, my mom's mom had endometrial cancer, my moms dad died from lung cancer, his mom died from colon cancer, and his brothers and sisters all had different types of cancer that took their lives. So it's likely a genetic issue, but not BRCA1 or BRCA2 because we don't have those genes. My mom is 85 and participating in a new clinical trial that may shine a light on new genome associations in my family with cancer, but for now we just don't know.
I am now seeking out natural AI's, even though I'm aware they are not as effective as the prescription AI's, but other countries do prescribe PSK, Chrysin, Turkey Tail Mushroom, DIM and other natural recurring AI's that I don't see the harm in taking and that may help prevent a recurrence to a smaller degree. It's about the same unknown as I have now with the AI's as many folks develop resistance to both Tamoxifen and the AI's, many have breakthrough cases of cancer, many walk away and are lost to follow up, There is truly NO good data for me to lay my hands on that accurately predict based on my specific diet, body and characteristics that I can lay my hands on to say ok if I cannot tolerate these meds my risk is ( ). The numbers I've heard range from 10% (doubling my 5% score if taking the AI's which my radiologist said was the rule of thumb) or 18% which my oncologist said was more likely based on tumor aggression of grade 3 and Ki67 score of 34%. The Tufts predict tool is only to determine the benefits of radiation and a same breast ipsilateral recurrence which doesn't concern me nearly as much as mets, the UK tool excludes radiation but includes with or without hormone therapy and it only shows a 2% difference in distant recurrence for my specific cancer type, grade, and treatment paradigm not including my radiation which presumably would improve my odds. Below is the UK tool and I added hormone therapy for 5 years to show their calculations with or without (surgery only) for my type of cancer. Again they don't include radiation yet so I would presume my odds would be lower given I had radiation.
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"Which could interfere with the study" doesn't mean they excluded anyone with a psychiatric disorder. Usually they exclude only if the psychiatric disorder would interfere with participation in the trial - usually that is people who are so ill they are unable to follow the trial instructions.
Predict does not exclude rads. It assumes they are given to all who meet the clinical criteria. They assume appropriate surgery and radiation are given. (Also, just fyi predict has been created and validated using data sets from places other than the uk so it's really trying to reflect intl guidelines and outcomes)
Nobody can predict what will happen to each individual. We can only predict for populations, and give estimates of odds for individuals. We can predict that a certain population intervention will cause or prevent cancer in the *population*, but we don't know which individual will be affected. There are smokers who never develop cancer. There are non smokers who do. Odds and risk reduction is the best we can do for each individual.
Ultimately, we gather as much info as we can and we make a decision which we have to live with and not regret
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Moth, well stated, particularly your last sentence.
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KateHanni - I hear you re how it seems that sometimes some on this board are not particularly sensitive or empathic toward those who are struggling with the emotional and cognitive side effects that these drugs can bring. They say that those who post a lot are mostly those who need the support the most at any given time. Well, I wonder about the possibility of a whole group being out there who needs support, but due to the emotional and cognitive side effects of these drugs, find it difficult or impossible to participate here.
We can't all remember every citation we saw, or the publication and date of everything we've read over the years about this disease. Sometimes we might even have the information but are just too wiped out to pull it all together and post it in perfect form. That doesn't mean we don't deserve understanding. This is not a science PhD program, but a place where people living with breast cancer should be able to come "as they are" and receive not only reasonable information, but also emotional support and sympathy.
Hang in there Kate, I'm sorry that you are struggling so much with all of this.
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KateHanni----what is the "UK" tool as your commentary came up with a blank box when you said to look below your entry? I am currently researching all DIM products and have yet to come up with the one I want to try. Turkey Tail comes up often as something supplement wise to add. As long as all these added supplements don't give you gastritis I am willing to try them
Oncologists, of course, pooh pooh all these supplements. No data. No studies. I am thinking Chinese medicine or Aruyveda consults for info.
I finished my Herceptin 1.5 months ago. Just for the record, I told my oncologist that I do not plan to start Letrozole until after the Holidays. I am FINALLY starting to feel like myself. Finally. I will try these AI drugs but if after a month I feel horrible again I might take the risk. Still cannot get an accurate "risk" percentage from my onc. They rattled off something like 11% if I do not take them and 6% risk reduction if I do. That does not equate to me. I am a grade 3, HER2+ with a very small, early tumor. Did everything I was supposed to and this was no fun journey. Minus these crappy drugs, IMO.
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PREDICT is the tool which UKs NHS makes available online
https://breast.predict.nhs.uk/tool
I'm dying of metastatic cancer. I have my own set of feelings about that. We all try to help each other here with emotional support, factual info and practical advice. The reason I post on early stage threads is to help people make a decision which they can live with...literally.
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Moth, all your emotional support to everyone is appreciated. Especially the early stage questions and concerns. I see you were originally early stage triple negative and then it changed. Your use of Letrozole came in 2020 if I read your timeline correctly? I do wonder why in all these years of having both the AI drugs and Tamoxifen in use that there are no statistics of the women who either never started or walked away from these drugs and their rates of recurrence.
Most of these prediction calculators deal with mortality. Oncologists are supposed to be following patients years after and one would think that their might be some research data or articles on the risk of recurrence studies and NOT using these drugs ---at least some 5 year data? Why has this data not been captured? Also I sure wish in all these years that big Pharma might have come up with something else non-toxic to lower estrogen.
I am reading the HER2+ entries on this site and many of the women who have had longevity and no new cancer or mets seem to have been those who posted they were not ER+ and never took these meds. How great for them that they are years out cancer free and did not have to take the AI's.
I do plan on giving the AI a try on the timeline I told my onc, after the Holidays. I dread the thought of immediately feeling so awful on these. Still researching DIM products as a backup. Of course, no data on DIM either.
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Racheldog: I understand your frustration. It might be difficult to get the stats you are looking for from women who discontinue hormone blocking therapy. Some don't tell their MO about their discontinuance. Still, doctors are required to report BC occurrence/recurrence and it could be noted if the hormone therapy was refused. My MO told me about a patient who stopped the anti-estrogen drug and was recently diagnosed with bone mets. A cautionary tale I'm sure.
What interests me is the development of biomarker blood tests that indicate the absence or presence of the cancer itself. If 80% or more women with estrogen positive breast cancer are cured after local treatment, then the majority are taking anti-estrogen drugs because there is currently no way of knowing who truly benefits from the adjuvant therapy. Consequently the standard of care is to recommend that everyone receive 5 years or more of tamoxifen and/or AIs. That's a long time to endure drugs with potentially toxic side effects that you may not even need.
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Racheldog and PamEP - The situation you describe makes it hard to buy into the stats and things that we are told/given about taking these AI's. I hear both of you and wish to high heaven they would put out some data comparing women who opt out altogether against women who take them for the 5 years. I honestly don't feel that the risk numbers and statistics they have out there about this are really all that accurate. There are women who it seems could serve as controls, who have just said "no" from the get go. These aren't even the women who tried AI's and then quit part way through. There is a group that just said, "No way, never, no how" from the beginning. Why can't they do a full clean comparison? Also, the AI stats to my knowledge, all involve women who previously took Tamoxifen, and the Tamoxifen numbers were derived from comparing those people to ones who took even different drugs before Tamoxifen. I don't know how that could produce clean data, but I'm no scientist. What seems like "common sense" to me though, doesn't seem to play out here.
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I'm not a scientist, but I do have a research (non-medical) background.
When doing research that compares two groups (for example, one group who take a drug compared to another group who don't take the drug), it is critical that the two groups be equally matched. Equally matched means the same number of participants from each age group, matching diagnoses on all relevant criteria (ER, PR, HER2, nodal status, grade, average tumor size), etc.. So while there are a lot of patients out there who have opted out of hormone therapy and it would be interesting to contact MOs to collect data about these patients, it would be difficult to draw any conclusions from such an unstructured diverse group of patients. Even if some patterns emerged, the findings or conclusions could not be compared to Tamoxifen or AI research results because the patient groups would not match. A single example of what happened to someone who opted out of AIs is an individual anecdote. Compiling information about many patients who opted out of AIs simply provides many individual anecdotes. It's not equivalent to a research study.
That said, it might be possible to set up a retrospective study, going to MOs looking for patients who opted out of hormone therapy and who match very specific patient and diagnosis criteria - thereby creating a 'matching' study group. Retrospective studies are not considered to be very reliable however because you are depending on people accurately remembering and recounting things from the past, and there can be bias and errors in how patients are classified to get them into the study. Plus, there would need to be someone with the will and the resources (staffing and money) to take this on.
"Also, the AI stats to my knowledge, all involve women who previously took Tamoxifen, and the Tamoxifen numbers were derived from comparing those people to ones who took even different drugs before Tamoxifen."
No and No. There are some studies where AIs were taken after Tamox. but the base AI studies included arms with patients who only took AIs. These patients were compared to patients who took Tamoxifen. This was done because by the time AIs were being tested, it was already known that Tamoxifen significantly reduced recurrence and new primary risk. It therefore would have been unethical to force the patients in the control arm of the study (the group not taking the AI) to forgo Tamoxifen, which was the accepted standard of care for ER+ patients at that time. Of course there would have been some patients who'd have been happy to pass on any treatment but this type of self-selection would have resulted in mismatched patients groups, effectively invalidating the research. As for Tamoxifen, as part of it's approval process, there were many large studies in which one group of patients took Tamox and the other group took nothing.
So for both the AIs and Tamoxifen, there absolutely is clean data. Those are the studies that provided the info that we have about the effectiveness of these meds. I previously posted that information in this thread. See my post of Oct 21, 2021 07:01PM.
Something else I've posted before... I believe that some MOs over-prescribe hormone therapy. It has become an automatic rote reaction for every patient who is ER+. But in some cases, when the tumor is small and non-aggressive, or when the patient has significant comorbidities, the risk of serious side effects (never mind quality-of-life side effects) might outweigh the benefit. For most patients, the risk of serious side effects is low - only 1%-2% - so it is worthwhile for most patients to try Tamox or the AIs to see what quality-of-life side effects they experience. But anyone struggling with QOL side effects should do an assessment of how much risk reduction benefit they are getting from these meds, and they should also take a hard look at their risk tolerance (recognizing that one benefit of these meds is a reduction in the risk of mets, which ties directly to mortality), to determine if it's worth continuing on these meds.
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Racheldog, my case is a bit weird. With stage 1 diagnosis in 2017, I originally had a trace bit of ER staining on that tumor. Different pathologists looked at it & finally they typed it as negative. Oncotype also came back negative. No tamoxifen prescribed after.
When I had my metastatic recurrence, one of my tumor biopsies again showed a faint ER staining - they still consider me triple negative but they added letrozole just in case it might do something. Kind of like, you're dying so we might as well throw whatever we can at it. It's a bit of a controversial issue & not all my team members agree with it being in my treatment plan.
There was some new report about ER low (<10%) acts more like triple neg & that it should be treated like triple neg. Makes it confusing for sure - definitely an area which we're just learning about.
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Beesie - Thanks for clearing up the issue of the original studies re Tamoxifen and AI's. The only ones I'd ever seen involved prior use of other drugs. Made me think of that old game of telephone where by the time the "message" gets down to the end of the line, things are garbled.
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Moth, you are very knowledgeable from what you have gone through and very helpful for most of us who read you. If you could turn back the time when you were first diagnosed in 2017, what else could you have done to reduce the change of recurrence?
Also, in another thread, you posted a list of things to do in order to reduce the chance of UTI. It was very helpful info that I want to read to my teenage girls, but I can't locate it. Also, would be great to create a new thread to help other women now and then.
Hugs
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ThreeTree, here is information from some of the Tamoxifen and AI trials.
Note that I've removed from the copy most of the bracketed info after each of the stats because they just add confusion (for example "HR, 0.91; 95% CI, 0.81 to 1.01; P = .08") but I did leave the SD (standard deviation) figures in the Tamoxifen text. Also, when it says "a non-significant reduction" this is based on a 95% statistical significance rate. In most research, to be considered "statistically significant", the probability that the results happened by chance can at most be 5%, i.e. there has to be a 95% or higher chance that the results are a true reflection of the difference between the treatments. So any result that falls below this will be considered a non-significant result, even if the probability of chance is only 8%, as in P = 0.8.
Tamoxifen for early breast cancerhttps://pubmed.ncbi.nlm.nih.gov/11279694/
"In 1995, information was sought on each woman in any randomised trial that began before 1990 of adjuvant tamoxifen versus no tamoxifen before recurrence. Information was obtained and analysed centrally on each of 37,000 women in 55 such trials, comprising about 87% of the worldwide evidence."
"For trials of 1 year, 2 years, and about 5 years of adjuvant tamoxifen, the proportional recurrence reductions produced among these 30,000 women during about 10 years of follow-up were 21% (SD 3), 29% (SD 2), and 47% (SD 3), respectively, with a highly significant trend towards greater effect with longer treatment. The corresponding proportional mortality reductions were 12% (SD 3), 17% (SD 3), and 26% (SD 4), respectively, and again the test for trend was significant. The absolute improvement in recurrence was greater during the first 5 years, whereas the improvement in survival grew steadily larger throughout the first 10 years. The proportional mortality reductions were similar for women with node-positive and node-negative disease, but the absolute mortality reductions were greater in node-positive women. In the trials of about 5 years of adjuvant tamoxifen the absolute improvements in 10-year survival were 10.9% (SD 2.5) for node-positive (61.4% vs 50.5% survival) and 5.6% (SD 1.3) for node-negative (78.9% vs 73.3% survival). These benefits appeared to be largely irrespective of age, menopausal status, daily tamoxifen dose (which was generally 20 mg), and of whether chemotherapy had been given to both groups."
Adjuvant Letrozole and Tamoxifen Alone or Sequentially for Postmenopausal Women WithHormone Receptor–Positive Breast Cancer: Long-Term Follow-Up of the BIG 1-98 Trialhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC6325353/
"The BIG 1-98 trial has been described elsewhere. Briefly, it compared 5 years of tamoxifen versus letrozole as monotherapy, and sequential treatment with 2 years of one of these drugs followed by 3 years of the other in postmenopausal women with hormone receptor–positive early breast cancer. In our most recent report, we found letrozole monotherapy provided a significant improvement in disease-free survival (DFS), overall survival, distant recurrence-free interval, and breast cancer–free interval (BCFI) compared with tamoxifen monotherapy at median follow-up of 8.1 years since randomization... ...This report presents results from the BIG 1-98 trial at a median follow-up of 12.6 years."
"The cumulative incidence of efficacy end point events for the monotherapy comparison of letrozole for 5 years versus tamoxifen for 5 years are shown in Figure 2. There was a nonsignificant, 9% reduction in the hazard of a DFS event with letrozole compared with tamoxifen over the entire time of observation. The early effect of letrozole was maintained over time; however, the magnitude in favor of letrozole seemed to be slightly diminished compared with the results at 8.1 years of median follow-up. For the monotherapy population, there was no evidence of variation of the treatment effect over time.
Other end points including overall survival, time to distant recurrence-free interval, and BCFI maintained similar HRs as in earlier reports, though the magnitude of the advantage for letrozole was numerically reduced (Fig 2B-2D; see Data Supplement for results of ITT analyses at 8.1 years and 12.6 years of follow-up).
Breast cancer mortality showed no evidence of variation of the treatment effect over time in the monotherapy comparison. The results showed a nonsignificant 11% reduction in breast cancer mortality with letrozole.
Efficacy end point results according to nodal status are shown in the Data Supplement. The HRs comparing letrozole versus tamoxifen were similar across nodal groups, but, as expected, the absolute differences favoring letrozole were greater for the node-positive cohort."
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Interesting to raise the issue of some MOs overprescribing hormone therapy. This article is 2 years old and I just came across it but it’s two well respected BC doctors basically saying this stuff can cause serious long term toxicity, maybe it shouldn’t be given out like candy. https://ascopost.com/issues/november-25-2019/breast-cancer-treatments-targeting-estrogen-may-be-putting-patients-at-risk-for-long-term-comorbidities/
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Beesie - Thanks again for the info. I seem to remember though that some time ago I mentioned the BIG study and how I thought they had a group that did not use Tamoxifen, and if I remember correctly you said that all of that study only used people who had taken Tamoxifen previously. I could be wrong. I have so much brain fog from this drug that I cannot think straight these days at all. I have "natural" difficulty with statistics, but I can normally walk myself through them. With this drug and it's side effects on my brain, however, I cannot walk myself through these things at all these days.
Keeping that in mind, do you have any ideas how I can reconcile two numbers that I have about the benefit of hormone therapy for me? The oncologist that I see told me that taking this for 5 years would reduce my risk of a recurrence by something like 40%. She did not give a time frame to which that statistic applies (5?,10?,15? years). If I assume my risk of a recurrence is 100%, because I've been told I am at a high risk for a recurrence, then from what she said, my risk is now 60% for a recurrence. For how long, I have no idea.
The Predict tool says that hormone therapy gives me a 5.5% benefit over 10 years, which sounds like something for sure, but at the same time, not all that much, given the side effects I experience.
How does this 40% risk reduction that the oncologist mentions line up with the 5.5% benefit that the Predict tool says I get from the drug.
Again, please excuse my very clouded brain here. Some of this might be obvious to many but I am totally confused. I may well be trying to compare apples and oranges.
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BCat40 - Very interesting article and I'm glad to see that someone at least is on to this problem of just how toxic these drugs can be; especially over the long term. The MD's/researchers featured mentioned younger women in particular being at risk for all of this premature aging, etc., but I would add that those of us in our 60's and 70's are also quite vulnerable, and assuming we have maybe 20-30 more years of life expectancy in a normal situation, we should also be included in this concern.
I just don't think enough focus is place on the systemic effects of these drugs, particularly on the brain.
The studies that this Dr. Ganz pointed out are very interesting, but I see all sorts of interesting studies that never go anywhere beyond something like this presentation. So much out there never gets picked up on and carried forward. This does help me again justify my taking this drug only every other day, though. As noted in previous posts there are studies that also show that lower doses produce the same level of estrogen suppression, so even though it isn't mainstream I'm going with that. Those studies too seem to be more of same where something of serious note has been discovered, but the ball seems to get dropped and the findings go nowhere. No further studies to confirm results or allow for changes in drug administration.
Thanks for posting the article.
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ThreeTree, whether your recurrence risk continues or not depends largely on your hormone markers. Triple neg tends to recur in the first 5 years whereas hormone positive recurrence continues for 20+ years after initial diagnosis.
with regard to percentages, when disparities in numbers are that large I would suspect you're looking at two different numbers: relative risk and absolute risk.
The exampleI like to use is let's say my absolute risk of getting shingles in the next 20 years is 2%. A vaccine company says they will reduce my risk by 50%. Big number! But it means that my absolute risk goes from 2% to 1%.
So the pharma compancy will me it will drop by 50% and my dr will say it will drop by 1% - they're both right.
There's an explanation of relative vs absolute here https://www.breastcancer.org/symptoms/understand_b...
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LillyIsHere, you know, I don't think I could have done anything more. The only evidence based things for lowering risk of recurrence for triple neg are aerobic exercise and green tea. I did those. Nobody on my team thinks tamoxifen would have helped me at all. I prioritized sleep & happiness and even though i was in a technically stressful school program I wasn't too stressed,, had good diet etc. I don't really know anything else I could have done. I don't have any regrets in that regard - I threw everything I could at it & the dice rolled the wrong way.
re the UTI, I posted a couple different ones but I think this might be the most recent https://community.breastcancer.org/forum/6/topics/...
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Moth - Thanks very much for the info and the reference to the absolute/relative risk article. I know that this issue is one I struggle with. Absolute and relative risk is one of those things that I can walk myself through (as in your example of shingles), but then it just doesn't stay in my brain and the next time I encounter the matter, I have to start all over again. As I said in my post to Beesie, I do not have a natural bent for this stuff in the first place, and then when the drug messes with my brain on top of having no natural inclination, I just can't do this!
My tumor was ER/PR+ and HER-, so I know about the 5 years for triple negative and 20 or so for ER+.
I really appreciate your input - not just for this post, but the whole forum.
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ThreeTree, the 40% is the relative risk reduction - from my MO and my reading and PREDICT it's more like 35% but 40% is close enough.
The 5.5% from PREDICT is your absolute risk reduction.
Although these numbers come from different sources, if I were to combine them, it works like this:
- Your metastatic risk if you don't take hormone therapy is 9.2%. If you take hormone therapy, this risk is reduced by 40%. With this 40% reduction, your risk comes down to 5.5%. (The 9.2% comes from the math of this equation, knowing the 40% and the 5.5%.)
Re the BIG 1-98 trial, there was no control group that took nothing. The monotherapy group comparison was one group that took Letrozole and one group that took Tamoxifen. I referred to this in my post yesterday when I mentioned the ethics issue - that's why they couldn't have a no treatment group.
ThreeTree, do you have an Oncotype score? It would be interesting to compare that to your PREDICT result.
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Beesie - Thanks for laying that all out for me. It makes more sense now (doesn't mean it will stick until next week or something though). In the moment, I get it.
I don't have an Oncotype or Ki67 number. Oncotype was never discussed with me at all and when I asked my surgeon about Ki67 he said that the institution I'm working with quit doing them some time ago. He said they only really used the number to help determine whether someone would need chemo or not, and that in my situation it was a no brainer that I'd need chemo, so as far as the doctors there were concerned it wasn't necessary.
Also, I have read too that 35% is a more accurate number re the AI risk reduction; I think the oncologist was stretching it just a bit.
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