Are Arimidex benefits absolute
I am postmenopausal and just had my second mastectomy for the stage 1 IDC. I had my bone density and it showed slightly below normal on one hip. My oncologist suggested Arimidex with the bone strengthening treatment every 6 months.
She said that some studies actually showed that the bone strengthening treatment reduces chances of the distant recurrence.
My oncotype being 21 shows 7% distant recurrence taking Arimidex. Supposedly Arimidex cuts the relative risk by 50% so if I don't take it I have 15% chance of the distant recurrence. There are no actual studies that show Arimidex benefits specifically for the distant recurrence. The only study I could find was when the high risk women were broken in two groups : one was taking it and the one did not. Then they looked at the results and it was 2% vs 4% which is 50% risk reduction. But this is for a breast cancer and not the same as the distance recurrence reduction.
I wish I could see some proof of its effectiveness for stage 1 clear nodes and double mastectomy women. I feel that I have to take it but part of me not sure. And I don't think I can even ask for the second opinion as it is the official prescribed course of action.
Anyone else struggled with this decision and decided not to take it
Comments
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I wish I knew earlier that I had some option if I take Arimidex, I could take bone strengthening treatment. I was worried my family history with weak bone so I decide to go on Tamoxifen. I do not know why my onco doc did not recommend like your doc. I envy you...I am also menopausal, I have a test results shows pre-stage of endometrial cancer. I believe Arimidex is much safer than Tamoxifen for menopausal woman.
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I am also postmenopausal (age 69) and struggled with the decision to take AI's and ultimately decided "no thanks". If I were younger or my risk greater, I would comply. My cancer was small, low grade, and my Oncotype was 11 with a 3% risk taking AI's so 5 or 6% without them. Not enough reduction in absolute risk to justify the many negative health impacts and side effects. There is a reason our bodies continue to produce some estrogen even after menopause: it is important to our bone, heart, and brain health. Not to mention hair, skin, lady parts, etc. Oh, and who needs worse hot flashes and creaky joints. A lot of evil packed in one tiny pill.
The main problem I had with it all is you can't get any personal risk/benefit information. If you take a statin or blood pressure medication, there are tests to determine if they are having the intended effect. With the AI's, there is no accessible test to measure your estrogen levels before therapy vs. after suppression, so no way to know if it is effective. I've found no study that indicates how much estrogen is "too much" and since AI's don't eliminate it entirely, even if you could know your levels, you wouldn't know if that was protective enough. No way to know if you have any rogue cancer cells floating around. You could be completely cancer free and with a low-risk tumor, probably are, so the drug serves no purpose. Even if you have circulating cells, they could be ER-. Or, if ER+, the drug still might not stop a recurrence. Women take them, put up with all the crap, and still get a recurrence.
So, for me, it was just too much a leap of faith for, at best, a very small risk reduction. In no way am I lobbying you to make the same choice. It's a tough personal decision and I know how you are feeling. Best of luck.
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ijl, see my posts in this thread:
Topic: Onc says meds reduce recurrence by 20 absolute percentage points https://community.breastcancer.org/forum/78/topics...
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For patients with BC, AIs were only ever tested against Tamoxifen. This is because it was already proven that Tamoxifen reduced the risk of mets by approximately 1/3rd, and it would therefore have been irresponsible, if not malpractice, to create a clinical trial where AI usage was compared to a control group where patients took nothing. That would have effectively doomed 1/3rd of the control group to the eventual development of mets which could have been avoided had they taken Tamoxifen.
In the above thread I show the clinical trial results for Tamoxifen (which is effectively the baseline for the AIs) and the clinical trial results for the AIs vs. Tamoxifen. AIs do reduce the risk of mets by more than Tamoxifen, with the overall benefit from AIs being in the range of 35% to 40%. This means that a 7% risk of mets with an AI would increase to at most a 11% to 12% risk (with a bit if rounding) without the AI.
As an aside, both AIs and Tamoxifen reduce localized breast cancer risk by more than they reduce metastatic risk. This explains why women who are high risk to develop breast cancer can reduce their risk by 50% if they take endocrine therapy. The provision here is that breast cancer risk extends over one's lifetime, which for younger high risk patients could be 40 or 50 years, and the benefit from endocrine therapy, taken for only 5 or 10 years, won't cover that whole period.
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ijl - I have the same concerns about Arimidex effectiveness and SEs. In 2017 started taking generic Anastrozole. Discontinued after a few months because of joint stiffness and trigger finger in both hands. Switched to Tamoxifen, those Ses went away. In 2019 with a 3rd diagnosis of BC, I'm on Ibrance and Arimidex. Chose to go with brand name vs generic this time, and get it directly from Eagle pharmacy in Florida rather than a generic through Insurance (insurance would have charged me at least 7x more for brand name). Did not have any SEs for a few of months, then starting getting stiff hands, and middle finger on left hand locks up. Concerned about bone thinning, and willprobably get another scan in a year or so. I guess the theory is for ER+ cancers, removing or blocking ER should help. I think turmeric helps (curcumine), both turmeric powder added to food, and supplements. For several months I had cut the glucosamine/chondroitin by half to reduce expenses, but have gone back to the 1.5/1.2 mg dose. Don't know if it helps or not. You might want to check another forum for Arimidex https://community.breastcancer.org/forum/78/topics/790338?page=579#idx_17369 and https://community.breastcancer.org/forum/78/topics/854403?page=45#idx_1348
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bluesky01
My Mom and grandmother also had weak bones. My oncologist ordered bones scan before my appointment so she knew about the issues. She still wants me to go on AI. you can maybe get a second opinion. As I understand it , you can switch to Arimidex at any point.
wtfwiththeusername
If I were in your shoes with oncotype 11 , I would definitely not take AI.
bluegurlredstate
Sorry to hear you have to go through this. I was not even aware of advantages of Arimidex over generic drug. I love tumeric and use it a lot in cooking.
beesie
As usually you have a lot of valuable information. My oncologist rounded up to 15% instead of 11% maybe to convince me to take it She is well respected Stanford oncologist and does a lot of BC research. I did not have a chance to ask her since at our appointment she presented me with the oncotype report and all the information. And as usual the questions come after the appointment.
I think I will go ahead and take it and see how bad SEs are. My friend is taking it with no SEs.
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Hi ijl - I take letrozole every other day, not Arimidex, but since they are both AI's I think what I'm about to say applies. I want to underscore the concerns that wtfwith... expressed about not being able to really know if AI's are working, and if so how much, since they do not check our estrogen levels. I've tried to talk about this with my oncologist more than once and she always dismisses me and says, "We just don't do that." No explanation about the ramifications of that. As wtfwith... pointed out also, we do need some estrogen in our bodies, even after menopause or we could experience serious or even fatal consequences.
Unlike you ijl, I am highly ER+ and had a large tumor, so I go ahead and take the letrozole every other day (against the oncologist's wish that I would take it every other day). I do think there is strong evidence that in my situation, it will probably do some good, but in yours it could be another story. The problem is there is just no way to really know.
Beesie mentioned the "unethicalness" (not sure if that's a word) of testing AI's with a control group that gets nothing, and I understand that. I did see one study though, (the BIG study?) where they started out with a group that didn't get anything, but when the AI showed benefit, the control group was offered the AI of course, and something like 60% of them opted to switch over and take the AI. Well, that apparently skewed all the data, so they never did get a real look at what an AI might do, compared to a control group that gets nothing. While I understand the ethical issue and believe that anyone who would want the treatment should get it, there are many women (like wtfwith ...) who voluntarily decline. It seems to me that a group of those voluntarily declining to take an AI, could be used as a control, but I am no scientist, what do I know, etc.
It sounds like you have real good reason, ijl, to consider not taking the AI and I am sorry that you are unable to find any real solid data that could help with your decision. I wish you the best and hope that you are comfortable with what you finally decide.
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ThreeTree, my understanding is that the BIG trial was specifically set up to compare 5 years onTamoxifen to 5 years on an AI. The reports I've read don't mention a "no treatment" arm. So maybe it was a different study. I'd be really interested if you can find a link.
Here is the report on the BIG trial:
Interpreting breast international group (BIG) 1-98: a randomized, double-blind, phase III trial comparing letrozole and tamoxifen as adjuvant endocrine therapy for postmenopausal women with hormone receptor-positive, early breast cancer
https://breast-cancer-research.biomedcentral.com/articles/10.1186/bcr2837#Tab1
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ThreeTree
Thanks for the information. If it were for a higher Oncotype : 21 , I would definitely consider not taking.
Is taking the medication every other day is almost as effective as taking it every day ?
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Beesie - I will look around and see if I can find anything like a link. I almost didn't post what I did, because I was so uncertain about whether that was where I read it or not. I only ever did a real cursory overview of that study. There was some study I read about where I thought they did at least start with a no treatment arm, but then so many switched over when the AI showed benefit. Maybe I am "mis-remembering" and/or misread part of the BIG study, and it was actually what you mentioned, i.e. after 5 years of Tamoxifen. It also could have been a different study. Again, I just did such a quick overview of that one and it was a while ago. I'll look around and let you know if I can clarify any further.
ijl - I think for me it is worth it to take it every other day, and there is some data that suggests it might work, but nothing official at all, or to be formally approved or recommended. Letrozole is made by Novartis and the standard prescribed dose is 2.5 mg every day, but their own data suggests that doses as low as .5 can suppress estrogen just about as effectively. I also read a couple of other studies, one in which MWF doses were given and some others doses like 1.25 MWF (as with the BiG study, I read these a while ago and am short on details/memory) and the conclusion was that they might well be just as effective as the daily 2.5. I also read another study that concluded that it's possible that older people (I'm 67) might not clear the drug as fast as younger people, and that lower doses or some other regimen might be in order. These studies refer to the half life of the drug and what they call "linearity" as part of their rationale for possible lower dosing. Again, all of this was just preliminary and not fully conclusive or anything that would prompt an official recommendation. I am just doing this on my own, and taking some level of risk probably, but that's how I'm dealing with the whole issue of AI's, and not really wanting to take one, even though it probably is a good thing for me to do.
Also, the every other day dosing and lower dosing that was done in the one study did not show any difference in side effects, however, even though the lower doses seemed to suppress estrogen as well as the full dose, i.e. if you want to try a lower dose or alternate day dosing, it likely won't make the side effects any better. Some on this site have suggested that the side effects are no better with the lower doses, because the estrogen suppression seems to be about the same, and the negative side effects are due to the lack of estrogen. That makes sense to me, and I have a lot of side effects. The ones I have sound very similar in nature and intensity to those who take the full 2.5 every day.
I don't know if there are people who have posted here who have taken Arimidex on an alternate basis. You might want to look for that and see what they have to say. The studies I read were about letrozole specifically. I have seen on various threads here though, where many take half the dose of their AI, some do every other day, some take periodic breaks for a week or something, but none of that is officially sanctioned, so it would be "going rogue" if you did something like that and could have negative consequences. Actually, I have seen where a couple of people on here have said that their doctors did tell them that with letrozole, every other day would be OK. My oncologist told me that "no physician" would ever say that.
Some too have mentioned how when birth control pills first came on the market, they were prescribing real high doses and then gradually came down over the years, to some real minimal effective doses that they use now. I also read somewhere on here where the same situation happened with Tamoxifen - apparently they initially prescribed much higher doses than they do now, but have discovered lower doses work and are maybe even talking about even lower doses yet. I am no expert on any of this by any means, but I hope, ijl, that this is some help in some way.
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Hi all. Having just joined I’ve been scrolling through many of the forums discussing generic Arimidex - having had a lumpectomy in Oct 19 followed by a double NS Masectomy and reconstruction in March as a Stage 1I’ve been placed on Anastrozol. I’ve been taking them for 8 days and already so much hair falling and tonight all my top teeth were bleeding !!!!
Last week I took the decision to move to a plant based diet after reading and hearing so much of the positives, especially around BC however a struggle to find recipies without Tofu and flaxseed since I’m ER+ and they have high estrogen
My Prosigna (similar to Oncotype) came back as 5% probability of distant recurrence
I’m 54 this month and I’m seriously considering no meds as at Day 8 I’m freaking out. My smile is something I haven’t lost throughout this journey and I’m damn sure I’m not gonna lose it after all I’ve been through already to have some drug take my teeth and make me bald
Early days on plant based diet but already feel better without fatigue my hand is a little stiff but as I learn this diet I’m assured of less inflammation now waiting for baseline test that was done on bone density
My BFF is on HRT and is like an 18 year old and reiterates “it’s about quality of life not quantity” I’m so scared to discuss my thoughts with my daughter and friends as they’ll give me such a hard time You ladies seem to understand this challenge and I’ll appreciate any views or indeed guidance on my next decision
Hope you are all staying safe x
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Puddock1711 - So much out there on nutrition, and not much agreement, and it changes with time. A lot of misinformation as well. But I've been told by several DRs that soy and flax are ok as food, but not as supplements. Several DRs I've seen endorse plant based or mediterranean diet. Soy and flax do have phytoestrogens, and there is debate about the role of pytoestrogens and ER+ cancer. There are alternatives to soy if you want to avoid or reduce in diet. You might want to read up on combining foods to make sure you get the right complement of essential amino acids (protein) if avoiding meat. wish I cold find the article that discussed "a" and "b" phytoestrogen, one was ok, and what was in plants like soy. Another article discussed how it seemed to have more benefit in young people vs older. I should pay more attention to the date an article is published, presumably a more recent one would have updated information ? Food revolution has lots of recipes, discussion on plant based diets.
https://www.healthline.com/nutrition/essential-amino-acids#definition
https://foodforbreastcancer.com/articles/breast-cancer-diet-during-aromatase-inhibitor-treatment
https://www.aicr.org/resources/blog/soy-and-cancer-myths-and-misconceptions/https://www.mdanderson.org/publications/focused-on-health/soy-cancer.h18-1589046.html
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Hi everyone, I've been reading the posts for over a month on Arimidex - whether to take it or not. I am so torn and this is so stressful for me. Today is the day I'm scheduled to started the generic, Anastrozole. I am totally on the fence on taking it -- rather I don't really want to take it for all the reasons women have stated -- depleting my body of estrogen, bone loss, fatigue, worse vaginal dryness to name a few. I asked my oncologist if I could take it every other day and got a emphatic "no". You can see my diagnosis, but Stage I in 2013 lumpectomy and rads, declined Tamoxifen. Onco DX score: 21. Oncologist at that time wanted me to try Tamoxifen since I was borderline osteoporosis and apparently Tamoxifen strengthens bones. Dexa scan this year showed just osteopenia but very close to osteoporosis. My new oncologist seems unconcerned. Had recurrence Feb. 2020., high grade DCIS and had single mastectomy April 7 right in the middle of the COVID-19 pandemic - but everything went well. New oncologist wants me on Anastrozole due to family history of blood clots and DVT (brother died of blood clots to lung). In fact she called me back when my April surgery went to the tumor board since it was a bit unusual and an added 3mm invasive tubular breast cancer was found. She says the Anastrozole protects the other breast and emphasized the need to prevent recurrence.
I am 65 and really don't want to feel more aches and pains from this med. I would rather have quality of life than be miserable with all the side effects especially the bone loss. I know I could be put on a bone strengthening med but it's not the same as far as I know. The Anastrozole is sitting on my counter ready for me to take -- but actually I could throw it in the trash. I know that "I should at least try it" according to my family and close friends --which I might try and take it every other day. I didn't ask her what is actually now my percentage of recurrence rate and I really want to know. No further testing like Onco DX score this time; no one said a word and apparently it was too small at 3 mm. If it doesn't protect much, I'd rather take another chance -- the first time didn't turn out too well. I will never know not taking the Tamoxifen made my cancer come back. I've tortured myself already with that enough. I know this is a safe place to state this.
Sorry if this is a little disjointed. Thank you for reading and I so appreciate all your advice and input. If you have anything to add, I would love to hear from you. I hope you are all doing well with your breast cancer journey. With everything going on in the world today, we still have breast cancer and personal decisions to make regarding our treatment. Please stay safe.
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rosecal954 - I wish you well with your decision. It is so frustrating. It seems like there are no metrics to see if it is working for you, just statistics about recurrence, and more drugs to help with some of the SEs. I do take brand name Arimidex. Initially it seemed as if there were none to minimal SEs. I now experience stiffness in hands, and middle finger on left is prone to locking up. I am probably due for a bone scan for another year, and at 62, worry about bone loss. One person posted a picture of finger exercises she does, I try to remember to do those. Stretching helps the rest of the body. I use turmeric in food and take supplements, I think it helps with the joints. But it seems like there is debate whether it behaves like estrogen. I also stay active with lots of walking/hiking. When gyms open up again, I'll try and get back to weight lifting. I know I could rig up weights at home, but I need the feng shui of the gym to be regular about it.
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BlueGirlRedState: Thank you so much for replying. That means a lot. I also am a big walker/hiker outdoorsy person and that's a big plus to stay active. I'm also getting out my small weights and lifting those. The suggestion of stretching is good too. I got out of the habit with my surgery and recovery and need to get back to it. It's the bone loss which probably concerns me the most about Arimidex and feeling "old" and achy. Took the first pill after dinner last night and have decided to take them every other day to start. I also take something to help me sleep. Time will tell. I'm the anxious type anyway and It's been a rough past few months with my recurrence and also my husband was diagnosed with thyroid cancer in Dec. and Jan. We just retired last year and everything seemed to be going good and now have these detours as well as the world in such a mess. But there are better days ahead. We have to look forward, not backward. I love your name by the way!
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rosecal954, I am sorry this is happening to you again and I understand how you feel. I just don't think the doctors understand no matter how good they are. It is like they have a scripted paper to read to all of us. I have osteoporosis and could not take anastrozole without a bone building drug. They offered Prolia. I didn't want to do it. I'm on Tamoxifen. I changed MO and just got the lecture about blood clots. I don't have a family history and I don't have a history of clots. I was told I would have to stop Tamoxifen if I got on an airplane or a long car drive. Where am I going to go with Covid going on? I already had a hysterectomy because the Tamoxifen made my fibroids to grow. I have been taking 10mg. because of the side effects I have. I'm told No that isn't the right dose. Recently, I found out I have lymphedema of the breast. I just turned 69. All I want is a good 10 years. I retired in 2018. Best wishes.
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flaslight: would you mind sharing why you refused Prolia? I will be taking along with Arimidex.
Oncologist said that the main thing is to make sure no major dental work like implants while I Am on it
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rosecal: My occurrences are mirror image of yours first I was diagnosed with DCIS and 2mm of IDC and now I have iDC on the other breast. I also refused Tamoxifen first time around. Now I am going to give Arimidex a try. And I also just recently retired. But like my friend said you can’t travel anyway so just take care of your health so you will be ready to go when time comes.
Like you said better days ahead
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Hi ijl, I didn't want to take Prolia because my osteoporosis is in my hips. There are some reports that say after the med is discontinued there is a chance of a femur fracture. Also, I was on Fosamax for 3 years and had a lot of side effects. My friend has been on Arimidex for about 6-7years and continues to have the Prolia infusions without problems. Good luck to you. Yes, better days ahead!!
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Actually I was mistaken as my oncologist prescribed Zometa and not Prolia. I wonder what the rationale is when chosing one over another. Seems like Zometa is also reducing the bone mets risk but I wonder what is the downdside
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Just a not to ladies debating the hormone therapy question. I have been taking Arimidex for 6 months now and have not had any significant side effects. Yes, my trigger finger (a result of my job) has gotten worse. I do sometimes wake up with stiff muscles and joints, but it goes away by the time I am back from the bathroom. I'm not at all thrilled with reducing my estrogen, but you play the hand you're dealt. And I'm not thrilled with the fact that they do not test to see if estrogen is actually lowered. My point is, not everyone will have debilitating side effects from these drugs. They have been shown to have efficacy, so they might be worth a try if you are on the fence. You can always stop if they get in the way of life too much.
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