FEMARA
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Tamoxifen has been studied past 5 years and there was a decrease in recurrence, so until there is research on AIs, they (oncologists) assume that it would have the same effect as Tamoxifen.
At the rate new things are coming out and how long (many years) it takes to get definitive data, we are always guinea pigs unless we want to rely on 5-10 year old research. That is the nature of ever changing medicine
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Kbee you always have it correct, so glad you are here
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Just want to point out that statistics don't apply to all, you either get a recurrence or you don't. Straight from my heart doctors mouth. So don't count on them.
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Marjen, I know you are not critcising at all. so don't worry about that at all. it's important to try to understand as I am trying. I am as I said at highest risk as I am stage 3. However my onc in his letter to patient did state quite explicitly that being er+ was a risk factor for late recurrence (perhaps I should have said higher rather than high). either way I do not feel 'out of the woods' and I am now 5 years on.
BB - I also don't understand the pink party at 5 years either!
Below are extracts from recent research on er + cancer and recurrence.
'Most of the studies of prevention of late relapse have been performed in women receiving tamoxifen as initial adjuvant endocrine therapy for early ER-positive breast cancer. The MA17 trial clearly showed that extended adjuvant therapy with letrozole after 5 years of tamoxifen prolongs disease-free survival and overall survival, regardless of the patient's nodal status involvement (6). Brewster et al. (7) found that ER positivity, nodal involvement, and grade were all associated with increased risk of late recurrence
Adjuvant chemotherapy and endocrine therapy for early breast cancer have had a considerable impact on outcomes (1), but a substantial number of women, especially those with estrogen receptor (ER)–positive tumors, remain at risk for late recurrences.
A sizable risk of late recurrence exists in estrogen receptor (ER)-positive breast cancers after completion of 5 years of adjuvant tamoxifen therapy.[1,2]This justifies consideration of extended endocrine treatment in ER-positive early-stage cancers.
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I have 20% risk even with Tamox and everything I did. I wish I could take an AI. I'd feel better that should I recur that I gave it a go. Aromasin would be the last ditch effort. Hard to move from T because I have 0 issues with it, I mean 0. ugh
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THANKS, wintersocks, the difference between high and higher can be big or not. Thanks for clearing it up. I think making a decision on one study is like placing all your eggs in one basket. Sometimes years later they come back and say the study was invalid for one reason or another. There was already a whole discussion somewhere regarding the five year ten year deal. Maybe here I'm not sure. I still think the five year number is arbitrary. What about two, three and four? Or six, seven eight and nine? And all the drop outs in those years that weren't followed up on I digress.
HapB, the one percent could be true for everyone but you is what I think I'm saying. It could be 100% for you alone. How are you doing today btw? Still good?
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Marijen
I agree with what you say and I am going to stay on Femera and if It transpires I should have gone on Tamoxifen (because I recur) well at least I tried my best... it's been a tough day with all this. Going to sleep now as 1:25 am here!
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HapB- It is only a 4-6% benefit over Tamoxifen. I never said to stay on it no matter what. If one can tolerate it ok then why not? During this time tests should be run esp for osteoporosis. I'm just grateful Tamox has 0 se for me so I'm able to get to 20% risk WITH it. Without something I'm sure to be visiting this shit again. Everyone needs to take their individual profiles, se's experienced, and decide for themselves. I wish I could take an AI and maybe Aromasin I'll get lucky that I will have tolerable se's but Letro scared me and Tamox is very kind to me- so I putting off making the move just yet.
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Wintersocks thanks. Have a good sleep with wonderful dreams
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HapB- I tried Letrozole. After the first day I wanted to stop. But MO said give it time to see if maybe it'll get better. I have severe osteoarthritis in my knees pre cancer. That got worse as other joint pains and head stuff, fuzzy and foggier than I already am since chemo. At 5 weeks I said I can't do this. I'd rather die. This is no quality of life at all, and I live alone with a beloved pet to look after. No help with stuff others have in spouse, kids, friends, neighbour, etc. So I was put back on Tamox which I had started after rads in 2016 and thankfully have 0 issues. My uterine lining actually has shrunk! Talk about weird. People worry about thicker but mine was 6 mm before Tamox and a year check it was 4 mm! Go figure. Hence why we are all different. You can always try something and if it doesn't work out for whatever reason, you can stop. It's our choice is bottom line, not MO or anyone elses.
As for being scared of Tamox or any other drug- I don't scare easy. I know every drug has to list every single possible se including death to protect themselves. If 1 person gets something, it's listed. I've been on many different anxiety/depression meds. All list can make suicidal thoughts. One person felt that way let's say and it's listed. Never happened to me. That's why no fear when I try meds. One can stop or change meds, which I've done many times with psych meds since '95.
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The above link should go to info on this site about a test for those with ER+ nearing the end of their 5 years of endocrine therapy to see if they would benefit from a further 5 years. I don't know which countries it's available in but has been taken by several women on this site. It gives a high/low benefit and high/low risk result apparently.
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One thing good about those of us just starting out whether on Tamox or AI is as my MO said, by your 5 years, chances are good that something else is out better and kinder. I'm just over a year on Tamox on the 10 year plan with my profile. But something just may come out better and kinder. We have hope with research continuing in these hormonal meds for ER+ people.
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HapB....I have said numerous times on this forum that most MOs know very little about female hormones. IMO our hormone levels should be checked but most MOs simply don't do it. For this reason I feel that an endocrinologist or gynecologist should be on our team. Also naturopathic docs test female hormones. Good luck to all navigating this disease.
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BTW- if you want to check your estroge levels, you can order your own blood work through LifeExtension. I think the total estrogens lab work is about $35. They send you the order and LabCorp does the test.
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HapB, that is interesting about the former nejm editor implying bias because of pharma companies. The MA-17 study that everyone quotes about staying on AI's was sponsored by Novartis, manufacturer of Femara. Also interesting, if you go on Medscape, there were 2-3 studies that came out right after MA-17 that contradicted its results. And even with MA-17, not every MO was on board with the results, if you read the article that interviewed several prominent oncologists on their opinions. Certainly not overwhelming support for extension. Also, none of them mentioned using a genomic test like BCI to determine who should extend therapy; they mentioned stage and nodal involvement only.
I recently read yet another article, I think on Medscape, on research showing increased cardiovascular disease/myocardial infarction for women age 66+ who extend AI therapy. I'm glad this information is coming out now, but it doesn't seem to be widespread enough to be a determining factor in discussions of who should stay on this drug, and who is increasing their risk of illness or death from another problem brought on by the drug.
On a more cheerful note, Happy Autumnal Equinox for everyone in the northern hemisphere
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SEPT 14, 2017 from The Oncologist
Distinct Effects of Body Mass Index and Waist/Hip Ratio on Risk of Breast Cancer by Joint Estrogen and Progestogen Receptor Status: Results from a Case-Control Study in Northern and Eastern China and Implications for Chemoprevention
Abstract
Background. Obesity is a consideration in the pharmacologic intervention for estrogen receptor (ER) positive (ER1) breast cancer risk. Body mass index (BMI) and waist/hip ratio (WHR) have demonstrated different effects on breast cancer risk in relation to estrogen receptor (ER) status, but the results have been inconsistent. Furthermore, the situation in Chinese women remains unclear.
Materials and Methods. We conducted a case-control study including 1,439 breast cancer cases in Northern and Eastern China. Both ER and progesterone receptor (PR) statuses were available for 1,316 cases. Associations between body size-related factors and breast cancer risk defined by receptor status were assessed by multiple polytomous unconditional logistic regression analysis.
Results. Body mass index and WHR were positively associated with overall breast cancer risk. Body mass index was positively associated with both ER1/PR positive (PR1) and ER negative (ER2)/PR negative(PR2) subtype risks, although only significantly for ER1/PR1 subtype. Waist–hip ratio was only positively correlated with ER2/PR2 subtype risk, although independent of BMI. Body mass index was positively associated with risk of ER1/PR1 and ER2/PR2 subtypes in premenopausal women, whereas WHR was inversely correlated with ER1/PR2 and positively with ER2/PR2 subtype risks. Among postmenopausal women, WHR >0.85 was associated with increased risk of ER2/ PR2 subtype.
Conclusions. Both general and central obesity contribute to breast cancer risk, with different effects on specific subtypes. General obesity, indicated by BMI, is more strongly associated with ER1/PR1 subtype, especially among premenopausal women, whereas central obesity, indicated by WHR, is more specific for ER2/PR2 subtype, independent of menopausal status. These results suggest that different chemoprevention strategies may be appropriate in selected individuals. The Oncologist 2017;22:1–14.
Full Text
http://theoncologist.alphamedpress.org/content/ear....
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faith, sounds like a fungal infection. Took me years to get rid of. Still have a vertical line on my thumb.
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Whatever decreased estrogen causes it would be the same for AI. Have you been to aromatase inhibitors and walking away. I think there are some SE problems posted there
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HapB, I agree that it's troubling about the lack of reporting of SE's for AI's. When I started taking Letrozole five years ago, dizziness was not listed as a side effect on the warning you get from the pharmacy. Now, it is, so I guess that's progress of some sort. My MO initially had me to an ENT to get sinus/inner ear ruled out as the source of my increasing dizziness (which it was, of course - staying off Letrozole for a month cleared it up). I think in years to come they will gradually add on some of the SE's now being investigated and published, like that scientist doing a lot of work on AI's, chemo drugs and the effect on eyes. It's frustrating to all of us that it takes so long for the FDA to recognize them, and conversely, the doctors we are dealing with. Even that Medscape article about the 5 year extension really just focuses on osteoporosis, which although potentially very harmful, is nowhere near as debilitating as a heart attack, at least in my book. Not to mention possible advancement of dementia and who knows what else. Even to call it '10 years of low grade misery' as one MO did is still under reporting it. I've said before, all of these MO's should voluntarily take one of the AI's for a full year if they think it's so harmless and see how they feel and function.
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Memory issues both on Tamox and Letro. But I had it really from chemo. So what is the culprit? Do we ever really know if we've been through chemo if it's the meds or chemo or even naturally aging setting in for those of us over 50. Who ever knows.
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>>Even that Medscape article about the 5 year extension really just focuses on osteoporosis, which although potentially very harmful, is nowhere near as debilitating as a heart attack, at least in my book<<
All my friends who have had heart attacks over the past 25 years are still with us--having been stented and their CV recurrence risk factors managed by lifestyle & meds. But osteoporosis can kill. In women over 70, the life expectancy after a major hip or spine fracture averages less than five years--some retrospective studies show that the risk of a woman losing the ability to walk and dying within a year of a hip fracture is as high as 25% (>33% if over 80). My husband is a cardiologist and gerontologist, and tells me that if a patient breaks a hip (especially if they have nobody living with them to take care of them and motivate a safe return to mobility) it is "the beginning of the end."
I've personally, recently, seen it kill. My friend of over 25 years' standing, who had been an equestrian and practiced kickboxing well into her 50s, broke her hip at nearly 69. She had severe osteoporosis but wasn't taking bone treatments. She also had COPD and was a brittle type-2 diabetic. She never regained the ability to walk without a walker, and could do even that only with great difficulty. She spent six months in skilled nursing care, then assisted living, and finally moved into a fully-accessible home her husband bought after having had to sell their three-story townhome. Her husband, despite being a busy retinologist, was devoted to her and did all housework, laundry, shopping and bringing home dinners. She had less than six months to enjoy that house--she became septic and went into organ failure. She died at only 70.
Meanwhile, though I have read numerous journal articles advocating 5 yrs. of AIs after Tamoxifen, or perhaps extending AIs alone beyond 5 or even 10 yrs., I have yet to encounter one finding a survival or anti-recurrence benefit from switching to Tamoxifen or another SERM after 5 years of AI therapy (as opposed to switching because of inability to tolerate AIs). The reason ER+/PR+/HER2- (Luminal A) breast cancer can never be considered "cured" is that ER+ tumor cells eventually can mutate to develop the ability to produce their own estrogen, and therefore become immune to AIs and SERMs. Chemo is usually ineffective because the cells don't divide rapidly enough to be vulnerable to cytotoxic agents, and "targeted" therapies are pretty much useless for HER2- tumors (and must be accompanied by chemo for at least the first phase of using them). And if recurrence happens 10, 15, 20 or more years after an initial diagnosis that was made post-menopause, the patient is less physically able to tolerate chemo.
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Chisandy
The osteoporosis risk really gets my doctors twitchy; hence their worry about continuing me on Letrozole beyond 5 years and also as an undx'd Coeliac for 10 years and malabsorbing calcium. My thinning of the bones is really quite minimal given these problems. It's all about trying to balance what's going to benefit v harm. But I have decided for better or worse to stay on Letrozole for a further 5 years. .
Your info and research is really interesting and informative
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HapB- the researcher's talk I attended last week said it's still on the fence for the most part for lower stage folks whether > than 5 years is beneficial. Need more studies. However for those of us just starting hormonals, there is hope that by the time we reach 5 or 10 years where decisions need to be re-assessed, there may be something out much kinder for us.
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It's a crap shoot. Some do some maybe and some don't. Which one you are/will be, God knows. That's why you need to be at peace with whatever decisions you make. If you recur, no going back with what ifs. But always go forth. That's the key when nothing is certain, and nothing is in the disease with whatever you do or don't do..
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I think the evidence shows a benefit to overall survival by taking AIs. For example, if you go to any of the survival calculators online, they always show better survival for AI vs. no antihormonals. For me, the benefit is about 79% vs. 77% over 10 years. The other 21-23% who do not survive die of something, not necessarily BC. Since heart disease is the #1 killer of women in the US, I'm betting a large proportion of those 21-23% die of a heart attack. If Letrozole increased my chance of dying if a heart attack, I think it would show up in those numbers. It's easy enough to parse out that information, and if there were a significantly higher risk of dying of a heart attack by taking Letrozole, believe me, someone would have published that data. For my diagnosis (ILC), Letrozole has been shown to be more effective than Tamoxifen. Taken together, this suggests that Letrozole is not going to significantly increase my chance of death, but will actually prolong life vs not taking an AI. Like others here, I'm hoping that more data about 5 vs. 10 years will be available by the time I hit my 5 year mark.
Have a great week everyone!0 -
They say Tamoxifen has the life threatening se's such as blood clot possibility while AIs can have the hardest to deal with se's such as the famous joint issues it seems most everyone has on AIs.
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I wonder what the peak age for recurrence is?
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I don't think there really is one. One lady I met at the talk last week was dx'd at 46. All was well until recurrence 31 years later. What I took away from it and info here is we need to be vigil for the rest of our lives.There isn't really you are safe now past age..
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I think there should be a chart of percentages of recurrences by age. First dx and 2nd dx
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