10 Years of Hormone Therapy Reduces Breast Cancer Recurrence Without Compromising Quality of Life – A “Rebuttal”

When I read that headline (title of this post) recently, I thought, really? What planet was that clinical trial done on? As I thought more about the content of the article (because you cannot go by headlines, as we all know), I decided I needed to write a “rebuttal” of sorts. Of course, my response here isn’t scientifically based. I don’t have data to prove my points, but I do have a fair number of readers out there who I’m pretty sure would disagree with that headline, and adamantly so. Don’t believe me? Check out this post. The comments keep coming.

First of all, a little summary about the article I am referencing, which was put out by the American Society of Clinical Oncology and presented at the recent ASCO Annual Meeting. The article summarized the results of a clinical trial called the MA.17R. The trial, which was  coordinated by the Canadian Cancer Trials Group and partially funded by Novartis, enrolled 1,918 post-menopausal women with early-stage, HR-positive breast cancer and who had received five years of one of the three aromatase inhibitors as initial treatment or after any duration of tamoxifen. The intent was to study disease-free survival (DFS) rates and quality of life (QOL). Participants were followed for a median of 6.3 years. Half received letrozole (Femara) and half received a placebo. Also, interesting to note, Novartis is the maker of Femara.

A second article I want to cite is one titled, Extended AI Therapy Improves DFS in Postmenopausal HR–Positive Breast Cancer, recently published in the ASCO Daily News. I will get to this one later.

So what is disease-free survival?

As stated on the National Cancer Institute’s site, disease-free survival means:

In cancer, the length of time after primary treatment for a cancer ends that the patient survives without any signs or symptoms of that cancer. In a clinical trial, measuring the disease-free survival is one way to see how well a new treatment works. Also called DFS, relapse-free survival, and RFS.

A few key results of the MA.17R study:

The annual incidence rate of contralateral breast cancer (cancer in the opposite breast) was 0.21% for participants on letrozole and 0.49% on placebo. At five years followup, 95% of women on letrozole were disease free compared with 91% on the placebo. Both findings are considered significant. There were also more bone fractures and more new cases of osteoporosis in the the letorzole group.

However, at five years there was no significant difference in overall survival between the two groups.

And again, taken from NCI’s site, overall survival means:

The length of time from either the date of diagnosis or the start of treatment for a disease, such as cancer, that patients diagnosed with the disease are still alive. In a clinical trial, measuring the overall survival is one way to see how well a new treatment works. Also called OS.

So basically, overall survival wasn’t impacted and disease-free survival was to some extent.

The study also looked at quality of life and how it was impacted.

This study concluded that QOL was not impacted much differently between the groups, although it was noted there were more vasomotor issues and sexual functioning was worse in the letrozole group. But it wasn’t significant the study summarized. Yep. That’s right.

This is the part that got me all hot and bothered.

Okay, bad pun ‘cuz as many of us know, hot flashes (known as vasomotor symptoms in medical jargon, just fyi) are a major QOL side effect for many women, as is sexual dysfunction. Various nasty side effects women often comment to me about include:  loss of libido, vaginal dryness and atrophy, bone loss, weight gain, joint pain, hair loss/thinning, difficulty concentrating, mood swings and fatigue, to name a few.

My observations/concerns about study results:

  • What exactly were the questions asked regarding QOL and how were they asked? Both are important.
  • Since the study’s participant’s had all completed five years of AI therapy already, perhaps the pool consisted of women who were experiencing fewer and less severe side effects to begin with, which could potentially skew the results. 
  • I didn’t see a mention about how many women in the study groups had had bilateral mastectomies (but I might have missed it). This component matters (to me anyway).
  • I was troubled by the cavalier attitude about bone loss in the second article I cited above. Ian E. Smith, MD, of Royal Marsden Hospital, United Kingdom, stated the following: 

    “We make a big fuss about this (bone-related toxicities), but the figures suggest it is not a big deal.” 

    I beg to differ. Speaking as someone who now has osteopenia (my bone health was excellent prior to hormone therapy), bone health is a VERY big deal. This side effect should not be brushed aside. Bone health matters. A lot.

  • Troubling side effects deserve validation and also a plan for how to manage them. This isn’t happening a whole lot, or at least not often enough. This is one more reason survivorship plans are so important. And btw, without meaningful survivorship plans and assistance in following them, you can keep your fake, patronizing National Cancer Survivorship days, as far as I’m concerned.
  • The 4% difference in disease-free survival is reported as significant, but to an individual patient, an individual woman leading and individual life, I’m not sure 4 points is significant to her.
  • I worry that women opting out of taking these drugs for various and personal reasons might be judged even more harshly for not “toughing it out”. (Yes, this happens already)
  • 100 deaths occurred in both groups. So again, no difference in OS, but troubling because that’s a lot of deaths. Maybe I’m missing something, but isn’t OS/number of deaths the most important thing?
  • Maybe I’ve been on the wrong AI. I suffered horribly on Arimidex. I’m doing better on Aromasin. I wonder how I’d be doing on Femara (letrozole) and if there are similar trials being done on the other two AIs. I hope so because maybe there is a big difference between them as side effects go. My experience so far has been sort of like finding out what’s behind door #1, #2 and #3.

You can read the QOL abstract conclusions here and the disease free-survival abstract results here.

Again, this study concludes that extending AI treatment to 10 years significantly improves disease-free survival without compromising QOL and without OS difference. But of course, this is only one study and its focus was on only one of the three commonly prescribed aromatase inhibitors. It’s not about to become “law” anytime soon.

And to be clear, I am glad these drugs exist; I’m still on one, for crying out loud. But I sure wish we had better options and at the very least, that women received more help in managing side effects when needed. I also hope all three AIs are being looked at and compared for efficacy and QOL impact.

So my question is this:  are the conclusions of this study somewhat misleading?

I say yes. The jury is still out on the benefit of extended AI therapy.

As usual, the benefit must be considered along with how an individual woman’s QOL is impacted.  Sweeping conclusions/statements about QOL may not be a good idea in this instance.

What do you think?

Are you on one of three aromatase inhibitors and if so, has your QOL been impacted?

Have you started extended AI therapy (the ten-year plan) yet or do you plan to?

Are you on letrozole (Femara) and if so, has your QOL been impacted?

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48 thoughts to “10 Years of Hormone Therapy Reduces Breast Cancer Recurrence Without Compromising Quality of Life – A “Rebuttal””

  1. I have been on all three AIs. Side effects from all three. I am managing on exemestane (Aromasin), but have taken breaks from it (without my doctor’s knowledge) when I just can’t stand it any more. I have muscle spasms, memory issues, joint pain, fatigue, extreme vaginal dryness. But all that is better than the depression while on letrozole and suicidal feelings on arimidex. When my physician assistant (and to show how bad my memory is sometimes, I just had to google doctor assistant name to come up with physician assistant,) said they recommend 10 years on AI, I didn’t even pause to say, ” NO, I cannot do that.” I have one more year, and for the sake of my family, I will get through this. But at the end of 5 years, I will celebrate taking my last pill.

    1. Linda, You really have experienced finding out what’s behind all three doors. Ugh… I’m sorry you have struggled with so many nasty side effects. I have taken those breaks too. It’s certainly understandable you don’t wish to continue beyond five years. My advice would be, don’t think about that yet. Thank you for sharing; I hope doing so helps a little bit. My best to you.

  2. In addition to QoL, I think selection bias is a big factor here.

    Interesting thing about DFS vs. OS. After my port had caused a blood clot, my medical oncologist suggested that I might want to discontinue AIs, which carry a small risk of clots. (He said that a second clot would mean stopping any and all AIs altogether.) I wanted to see what the rest of my medical team thought. My radiation oncologist pointed out that AIs improve DFS but not OS. (However, DFS is not chump change, given the potential savings in treatment, tests, collateral damage, etc., for the duration.)

    When I spoke with my pharmacist, he said that you find improvement in DFS but not OS in all drugs that treat major conditions. So, drugs that treat things like diabetes, cholesterol, etc., all come with this caveat. It doesn’t apply only to AIs. After quizzing my team, I’ve decided to stay on anastrazole for now. I have side effects, to be sure, but they are manageable so far.

    1. Elissa, I agree about that selection bias. Good point about other drugs coming with this caveat too. Taking any drug is all about balancing the pluses and minuses and each person must decide what’s best for her/his situation. Thank you for adding to this discussion. Hope your side effects continue to stay manageable.

  3. I have been on Letrozole for ten months and I battle daily with staying on it. I suffer from muscle and joint pain, total loss of libido, vaginal dryness, fatigue, insomnia – hot flashes between 5 and 10 times per night, low grade depression (who wouldn’t be with these side effects), and weight gain. These deleterious effects have completely changed my life for the worse. At my last Oncologist visit the nurse didn’t have enough room on the computer form to record all of the side effects I am experiencing. My doctor half heartedly tried to explain them away as normal signs of aging. (WTF) I thought to myself and retorted that I had none of these things before being put on Letrozole. The only option offered was to take other prescription meds to mask the side effects, but each med comes with their own bag of badness. I will not begin what seems to be a never ending cascade of masking what is wrong from the start.

    1. Lynn, I hear you. I am sorry you are suffering from so many side effects. It’s not acceptable for your doctor to explain them away as normal signs of aging. I understand your unwillingness to take more drugs to mask things. I’ll say again what I always say, don’t suffer in silence and don’t let your doctor brush away your concerns. At the very least you deserve validation and you also deserve help in managing things. You could consider switching AIs. Just a thought. Good luck with everything and thank you for sharing.

    2. My side effects from one year of Letrozole are sound identical to yours and I don’t bother saying anything to the doctor anymore because he just patronizingly brushes all my concerns off anyway. I am doing better than I did on tamoxifen, but barely. It seems to me the SE’s get worse over time. I don’t know how anyone could dismisst these side effects as not affecting QoL. I do take an antidepressent and occasionally pain killers, but I am certain I will stop at five years (probably earlier) and I don’t think I will accept more drugs to try and mask this one. I couldn’t afford them, even if I wanted to.

      1. I find I’m saying less and less at every check up. The patronizing attitude is so hard to put up with. Everything I ask or want explained is brushed off.
        Do you still go to the appointments? Do you wonder if you will be properly cared for, if the disease returns, but you have been an uncooperative patient?
        I stopped Letrozole after about a year. I stopped Tamoxifen after about a year.

  4. Nancy – thanks for a great post – I think you did a good job of covering the science as well as the finer points that were often left out of the media coverage. The decision to extend endocrine therapy should be a challenging one for physicians and patients alike – while there are benefits, the absolute benefits are relatively low, and side effects also increase. It is very important that patients take the time to understand relative versus absolute risk. In addition, patients should discuss in detail the benefits and the downsides of endocrine therapy, and then make a decision that’s right for them. Quality of life is extremely important, and I quoted Dr. Don Dizon in my blog post who noted that no significant impact on quality of life doesn’t mean that “everything’s peachy”. The podium and post-plenary session discussions were very interesting, and it was actually refreshing to hear some of the discussion focusing on quality of life issues. More of my thoughts here: http://drattai.com/extended-hormone-therapy-for-breast-cancer/

    1. Dr. Attai, The decision to extend AI therapy is a challenging one for many, that’s for sure. QOL does matter. A lot. I loved that quote from Dr. Don Dizon in your post. Every woman is unique, as is her situation. I’m still on Aromasin, but I haven’t yet decided about staying on for ten years. I can’t think that far ahead. I’m thinking in three-month intervals for now and waiting to see the results of my bone density test at the end of the year. That might help me decide. Thank you for reading and sharing some thoughts and for sharing your link as well. Your views are always so well-balanced. Again, thank you.

  5. Excellent analysis, Nancy. This topic always bothers me because my side effects are often brushed off. Or I get sent to see a specialist. And once the specialist can’t fix it, I get told, “hang in there! you have to take Tamoxifen” — which makes me feel like I’m doomed. I’ve also been told I should feel lucky I have options. Why do people automatically assume I am ungrateful when I express my frustrations/concerns with these treatments? And one more thing, I once had a doctor tell me my side effects were related to aging, even though I am in my 30’s. It’s like everyone avoids the subject.

    I haven’t taken any AIs but my onco already warned me that this will be my next course of treatment. She also said that her patients seem to have a more difficult time with AIs than with Tamoxifen – -can’t imagine facing more complicated side effects! I agree quality of life is important and should be taken into consideration when coming up with a treatment plan.

    1. Rebecca, I hate it when side effects are brushed off and I know what you mean about that assumption…And aging? Cripes! You’re in your 30s! Geez…Well, if you do choose to go the AI route at some point down the road, I hope things are tolerable for you. Ugh… Thank you for reading and sharing some thoughts.

  6. Sometimes there’s a big difference between ‘statistically significant’, ‘clinically significant’, and ‘personally significant’ that isn’t apparent in studies like this. Glad that QoL is being added to the research mix, and that patient-centered outcomes are entering our lingo, but qualitative data doesn’t always capture the whole story. Would love to see some good qualitative studies on QoL and different treatment options. Thanks for the great post!

    1. Jackie, You are so right about those distinctions. I am glad QOL is being included in such studies too. It has to be IMO. I hope all three AIs are being looked at, and I hope there are better options at some point – the sooner the better. Thank you for adding to this discussion.

  7. Hi Nancy,

    This is a really excellent, comprehensive post. I quickly glanced at the report, and my first and only impression is that the studies done were less than stellar. Too many unresolved questions. And the recommendation of extending taking AIs to 10 years makes me shudder. I suspect the real reason for the 10-year recommendation is to line the pockets of big PHARMA. After all, they can continue extending the time in which pharmaceutical companies can sell the AIs.

    And why has it taken so long for quality of life issues to be considered? And why are they swept under the carpet? Bone loss is a huge deal. As you know, I also have osteopenia and I suffered so much under the AIs I was taking (Aromasin and then Femara), that I was in agony. Even breathing hurt my bones. I was taken off the medication, thankfully, and I got my life back.

    I am angry. These medications (and I’m not doubting their ability to keep cancer at bay in some cases) impeded quality of life for many. Two and a half years was agony for me. How the hell are people supposed to take these for 10 years? If I took it for 10 years, I’d probably have osteoporosis and have broken a hip by now.

    Sorry that my comment turned into a rant, but I’ve had it with the indifference researchers often have regarding quality of life issues.

  8. With three months of being on letrazole I had developed bone thinning, dizziness and sickness have eased a bit one year later. My mood swings have been the most difficult thing to deal with not helped by diagnosis, even after counselling for the first time in my life I am now on medication to help Even more pills to take.

    1. Maureen, I am sorry about your difficult-to-deal-with side effects. And yes, more pills…Enough said. Thank you for sharing. Take care of yourself.

  9. Hi Nancy,
    Thank you for this excellent analysis of the study and the many observations, concerns and unanswered questions that arise from it. I started with Arimidex but did not stay on it for long–just felt unwell/”yucky”. My oncologist switched me to Femara and after a couple of months did feel better and was able to complete 5 years. I’ve always thought there should be trials comparing the AIs to each other. And that seems even more important with the question of whether additional time on these medications is worthwhile. Another thing I wonder about is how the results break down by risk of recurrence . I wonder whether there might be relatively more benefit for women who have higher risk of recurrence – extending the treatment is such an individual decision and yet, without that information, some women may feel they need to go more years when perhaps they really don’t gain a whole lot from doing that.

    1. Lisa, So are there trials comparing the three? I sure hope so. It seems Arimidex is hardest for many to tolerate, although I’m basing that on nothing except comments and emails I’ve received. Interesting that this was the same case for you. I sort of wish I had tried Femara before Aromasin as I’ve heard the SEs can be permanent with Aromasin, though my oncologist disputes this. Ugh… not sure what I’ll do long term. For now, I’m trying to make it to year’s end. Go from there I guess. Good point about the higher risk for recurrence. Since I never had the OncoDX test, I don’t know if I’m considered at higher risk or not. Wish I did. That would sure help me decide. Thank you for reading and sharing.

      1. Nancy, my impression is that there have been a number of trials comparing individual AIs to tamoxifen and that based on all these we have the understanding that the AIs are equivalent to each other. I might be missing something, but I’m not aware of any trial comparing all three AIs to each other.

        1. Lisa, I am not aware of any comparative-type studies either. Such studies would be interesting, but not sure how they could be set up. Thank you for your additional comments.

      2. I tried Femara first and lasted six weeks. The mental side effects were too scary. I took a break, during which time I had my second mastectomy (prophylactic), and got back to what I considered pretty close to normal. I then went on Tamoxifen and had major pain (much more severe than on Femara) after about a week. Then I started crying and couldn’t stop for several days and was heading to the dark side so stopped. Now I am considering either Aromasin (a steroidal AI, which, from my research is irreversible) or Arimidex (which is reversible/non-steroidal). I don’t have a full understanding of the difference, but I am leaning towards Arimidex since I did not do well with steroids connected with chemo. The articles are confusing and scary. BTW I am post-menopausal and very upbeat and active – so these side effects weren’t just me whining – it was a scary personality shift. Fortunately I have been off the Tamoxifen for about two weeks and am much better, although I still see issues with short term memory and slightly more emotional. The decision to go against the the hormone blocker recommendations is tough.

  10. Nancy, thank you so much for this post. I have been feeling so alone with the side effects I have been experiencing on anastrozole. The few people I know locally that are on anastrozole have tolerated it very well. I was feeling like I was the only one experiencing all of these problems. I have always overreacted to any type of drug, and my side effects were overwhelming after only 2 months. My oncologist seemed skeptical of my list of side effects, but took me off for 3 weeks, telling me I should feel better immediately if it was indeed the anastrozole causing my side effects. He insisted I have a full medical workup to rule out any other medical issue. I did not feel immediately better, but I did feel like my old energetic self after 2 weeks. The next time I lasted 3 months, but the 3rd month I had zero QOL. I have now been off for a month, and go back to the oncologist this Friday to discuss options. I was diagnosed with a very advanced localized invasive lobular carcinoma, and my oncologist is certain that cancer cells are “out and about”. It is so frustrating. I feel doomed if I don’t stay on an AI, but when I am feeling so bad when on the medication, a shorter life worth living seems better than 5 (or now 10) years of no QOL. Of course, now that I have been off the medication for a month, and feel great, I want to try to find a way to make it work. I find it very frustrating that there is one dose for everyone. I asked my oncologist if could take 1/2 of a pill, and then run tests to see if that is enough to block my estrogen. He said that was impossible. How can it possibly be that “one size fits all”?

    1. Laura, I had horrible side effects with anastrozole. Can you ask your doctor if you can try another AI? I was on anastrozole, then letrozole, and now am on exemestane. Although I am definitely not side effect free, exemestane is tolerable most of the time. People react differently to different drugs. Hope you find a solution to all your suffering.

    2. Laura, One thing I tell you with certainty is that you are most definitely not alone regarding side effects. I couldn’t continue with anastrozole so my oncologist suggested exemestane (aromasin) and I am doing better. I still hate taking it and I am by no means side effect free, but I’m doing better. So it sometimes does help to switch. Here too, ones size does not fit all. Hope things improve for you. Don’t suffer in silence, just do not. Thank you for sharing.

  11. Thank you, Nancy, and every one else for this very enlightening post. I am in the middle of my third cycle of TC chemo and dealing very badly with it. I was supposed to get six cycles but now my oncologist has says it will only be four based on how I have been reacting. At my last appointment, she told me it was more important to get me on the estrogen blocking drug then to finish out the chemo based on my 99.5% estrogen receptivity. She is planning to start with Aromasin but readily admits that she is concerned about the side effects based on how I have handled the chemo so far, which has been disastrous. I am scared out of my mind and really don’t know what to do. I had a double mastectomy with reconstruction and was stage one B, estrogen positive ,HER negative and no lymph nodes. But my oncotype score of 31% put me at the high risk of recurrence rate due to the nature of my aggressive cells. Thus, the chemo and aromatase inhibitor drugs. Even with doing the chemo and the drugs, my risk of recurrence is still at 12% so I don’t know that I have a lot of options (I am 63 years old ) but the thought of having no quality of life for at least five more years is something I am really struggling with. My oncologist, who is one of the best in the country, is sort of beside herself with how poorly things have gone with my chemotherapy. But at least you’ve given me a lot of questions to ask and hopefully I can get some answers to make these big life decisions.

    1. Barbara, I am so sorry to hear you are doing poorly with your chemo. I can sympathize as my dr. told me I was in the top 1% of patients who reacted so poorly during my chemo (AC followed by taxol). Although you are reading about how people react to AIs, keep in mind not all react poorly. It is scary, but with your dr’s help and the support of your family and friends, hopefully it will be tolerable. These are big decisions, and scary ones at that. One day at a time.

      1. Thank you, Linda, for your encouragement. There are days when I truly feel like an outcast when I’m told repeatedly how well well most people tolerate TC chemo. Clearly I’m “not most people.” This week they had to postpone my 4th and last infusion because I was so weak and running fevers. Last week I was hospitalized with neutropenia for five days. Today I wonder how I will make it through treatment 4 and then an AI. You are right: I need to take take one day at a time!

    2. Barbara, I’m sorry chemo has been so rough. This doesn’t necessarily mean the AI treatment will be the same for you. I’m glad to hear you have a top-notch oncologist. I am hoping things go well from here on out for you. Keep us posted. Thank you for reading and sharing.

      1. I just finished reading your book, Nancy. First, I loved it! Your message resonated more with me than most I’ve read… for me, it was spot on. My mother-in-law( whom had been like a mother to me for over 30 years) passed away on December 30 from lung cancer, and I was diagnosed on January 7, 2016. So the parallels with your mom were so relevant for me. I also related to your comments about hating “cancer as a journey” – I couldn’t agree more – it’s an ordeal. I do get tired- actually sometimes even angry – of people constantly telling me “be positive,” “don’t allow yourself to be sad,” ‘fight the good fight,” , and “soon this will all be over.” I know all their intentions are good; but you couldn’t be more right: ” cancer is NOT a Gift, and it doesn’t make us better people.” I applaud you for your candor and the ability to express what most of us want to but don’t know how. I have journaled on CaringBridge.org, and present my good and bad days. I find when I present a “down day” that I get a lot of the comments I’ve just described; so I am often not sure whether to continue to reveal my true feelings. But while family and friends certainly track “my progress” on this site, I really created the journal primarily for myself; and so I try to be as true to myself as I can. At any rate, I’ll post when I start whichever AI (at the moment my oncologist is planning Aromasin (but my oncologist admits she is concerned about the side effects based on how poorly I have reacted to TC chemo and Neulasta). I do worry about my “survivorship plan,” too. but as each of you has said – one day at a time! I am grateful for sites like yours where women have felt comfortable expressing their experiences and feelings!

  12. Good for you and an excellent rebuttal, Nancy! I can tell you that I didn’t have a lower quality of life on AIs — I had NO quality of life. That’s why my oncologist took me off of them, as you know. Sometimes I think researchers should start taking AIs and keep at it for 10 years and then I dare them to say that there’s no loss of quality of life. I feel very strongly about this because for many, many people this class of medicines causes lots of suffering. Great post, Nancy!

    1. Beth – I have felt the same thing about making oncologists take an AI for 6 months to a year and see how they do. My MO said so many times “most people have no side effects” that I wanted to strangle him. When I mentioned seeing people report side effects on blogs and internet discussion boards, he dismissed it. I’d love to see him on Arimidex for a year or two and see how he does with chronic insomnia, bladder infections, no sex drive, etc.

  13. Thanks Nancy for your blog. I am “slated” to start AIs within the next month. I have triple positive breast cancer and caught it early (at almost 49 years of age.) I was on tamoxifen for two years (still on it) and have all those side affects of the AIs you are all talking about. I had to go off of tamoxifen recently for about 6 weeks when I had a hip replacement. I felt sooooo good, despite the recovery from surgery I was going through. I went back on and am feeling bad again and actually stopped taking it two days ago ’cause I am fed up. I don’t think I want to go thru with AI therapy. My oncologist even said I would feel worse. He states that the percentage of chance that cancer returning by not going on AI is about 50%. I am thinking I might take my chances of not going on them as I got that sweet taste of improved QOL when I was off of tamoxifen during my hip replacement. I’m confused….

    1. Sally, It’s important to remember that not everyone experiences the side effects. You might be one of the lucky ones. And I certainly understand your confusion. I encourage you to follow the advice of your oncologist. Regardless of what you decide, I wish you all the best. Thank you for sharing.

  14. Wanted to add another bit to this thread. I had my quarterly check-up with my MO on Friday (7/22) and we talked about the new findings. He said that for someone like me, who has had no node involvement, he generally would not recommend continuing an AI for five additional years. He said that most of the added prevention applied to the contralateral breast, and that the cases where he would recommend ten years of AIs include those with lymph node involvement, a large primary, or other risk factors. I brought up the Breast Cancer Index (http://www.breastcancerindex.com/), which is a biomarker test to help determine the benefit of continuing AI use. We agreed that it might pay to take that test, and also agreed to wait until my five years were coming to an end rather than take it now (I’ve been on anastrazole for a bit over 1-1/2 years), because something new might come along in the interim.

  15. I’m BRACA2 positive. I had a bilateral mastectomy almost 3 years ago and was stage 2a in the left breast. Also all of the lymph nodes in the left side were removed with only one positive. Underwent 4 dense dose chemo treatments. I’ve been on femara since then and was trying to cope with only 2 more years of this to go. I feel like I have a bad case of the flu most days. Everything hurts, can’t think and then there is the neuropathy from the chemo that I still have. I had previously had a total abdominal hysterectomy including ovary removal several years before this. I cannot see myself taking another 5 years of Femara. I will be almost 63 when 5 years are up. This medicine is making me feel ancient. I want to be able to do things without considering how long it will take for me to get over doing what I want or choosing what I can do.

  16. I have been on letrozole for 2 1/2 years , loss of libido, vaginal dryness, memory problems and tiredness have not exactly added anything good to my QOL but I guess I shouldn’t complain because I have way less side effects than many other people have. So far there has been no sign of the cancer returning and I am thankful for that but one thing I would really like to know is what my risk factor actually is. I don’t have an on oncologist anymore, after a year he told me I could just see my family Dr. twice a year, that doesn’t sit all that well with me because I get the impression I know more about breast cancer than my Dr. does.

  17. I had breast cancer first in my 30’s then again 10 years ago. In both instances the tumors were very aggressive. My oncologist this last time was a researcher and worked closely with the cardiac docs because the second chemo caused significant heart damage. She advised me to stay on the Aromasin without an end date, but I have decided that when my 10 years is up next month I am going off of it. Quality of life definitely is an issue as even 6 months ago I was still hiking and biking but now can barely stay upright for 5 or 6 hours. My heart is probably the culprit but I have all of the side effects listed by everyone here, so if I can gain some energy and stop the pain it will be worth it. I was nervous and started surfing the internet, found this blog and after reading the replies here I feel braver and know I can do this. Thanks y’all !

  18. Hi, Nancy. Thank you for the great post. I must share my personal frustration here – if only to vent… I was diagnosed in 2011 and started tamoxifen in 2012 after my chemo/rads treatment. Back then, the game plan was five years total. My two years on tamoxifen were hell – massive hot flashes and terrible neuropathy in my feet. My onc switched me to letrozole and these symptoms went away. I was tolerating letrozole well – no more hot flashes or neuropathy. Then my hair started to fall out. And it continues to fall out. I am nearly bald with male pattern baldness. And my libido is totally gone and my vaginal dryness is horrific. I hate this stuff (and that is an understatement). But it’s protecting me against future cancer so the docs all say the same thing which is basically “Suck it up, buttercup.” I’m sick of sucking it up. I’ve had an end date of June 2017 since I started all this back in 2012. And now they want to tack on two more years and maybe a total of 10 years? NO! NO! NO! I don’t want to take this stuff anymore. The five year plan was a good plan for many women for a very long time. I don’t see the benefit of taking this stuff for 10 years. To your point – overall survival does not change or improve. And the bone health issue is a big one for me since osteoporosis runs in my family. I’m sick of this crap. Sorry to rant all over your blog. But I do want to say THANK YOU – thank you for being open about QoL issues and weighing the benefits of taking AIs for an extended period of time. I know a lot of other women who were put on AIs with a five year plan and now don’t want to extend their treatment. I’m one of them.

  19. Hi Nancy

    I am a little late to the table, but I do have some thoughts and comments. I started Tamoxifen Dec 1, 2015 and stopped taking it Dec 30, 2015. After only 30 days of being on this drug, I literally wanted to kill myself. I am a strong and stable individual, not someone who contemplates suicide. It was the drug. It caused such extreme anxiety and sleep disturbances that I was prescribed an anti-depressant and sleeping pill, all to try and manage the side effects of the one drug that was supposed to save me. I made the decision to stop taking this drug. My oncologist initially supported it but my radiation oncologist gave me a lot of grief. When I told him point blank that women were suffering in silence and not being honest with their doctors, but more importantly still ending up with recurrence despite being on these drugs, he said “you’re right”. I have not been on this drug for over a year now and manage my life holistically. I would rather have quality of life over quantity. I hope I don’t live to regret my decision, but I just had my 2nd annual mammogram and it came back clear.

    I recently saw my oncologist, and he asked if I would consider going back on Tamoxifen, and I said absolutely not. I’m attaching an article that for me was the compelling reason to stop taking this drug.

    While I was in the throes of mania for that 1 month, I did so much reading and research, and I firmly believe that these drugs are not the silver bullet their touted to be. My opinion of course. I’ve read so many blog posts by women post treatment who are taking aromatase inhibitors, and it saddens me to think these are the best options we have for survival.


  20. @Laurie – OMG I could have written your post about Tamoxifen, except I only lasted 12 days… I will read the article you linked but wanted to thank you for your post.

  21. I was switched to Tamoxifen a few months ago. Fortunately I’m tolerating it pretty well. The previous aromatase inhibitors I took caused me an enormous amount of joint pain; I could barely stand up straight in the morning. Both of my hands developed a trigger finger and thumb. My GP referred me to a hand surgeon for cortisone shots (egads did those hurt…but they helped) and I asked if he had heard of a.i.s causing this and he said “YES!” Not so much from Tamoxifen though. In fact, he sent me a journal article about it. I forwarded that to my oncologist because she totally dismissed that being a side effect. A small victory! I agree with some of the previous commenters. Have your onco take this stuff for a month or two and she how she feels. It’s been about 2 years now since my diagnosis and I’m dealing with weight gain and neuropathy in my feet. I was told that the a.i.s are not responsible for that, it’s the chemo. Reading some of these comments, I’m not so sure. I take a very low dose of gabapentin. It helps a little. My onco wants me to up the dose but when I do that I feel like a zombie. I have gained almost 10 pounds since my chemo ended and I am frustrated as hell trying to lose any of it.

  22. Thank you for your review of this study. I have been on arimedex for almost one year. I can’t remember names of things, my feet hurt all the time, I’ve gained 10 lbs., my skin is changing right before my eyes, I hot flash all day and night, my vag is drying up and I’m getting bladder infections on the regular. I’m 48. I am starting to consider taking it every other day. When I said my feet and hips hurt I was told it usually takes years for that symptom to happen. When I said I was tired of hot flashes I was offered an anti depressant. When I said I was getting bladder infections and sex hurt I was recommended estrogen cream (are you kidding?) She said it was OK. Well originally before I got this cancer I was given estrogen cream to rub on my legs. It stopped my hot flashes then, so obviously this little amount of cream gets into the body and affects hormone levels so how can that be OK? My urologist thought she was nuts.

  23. Beth I’m so sorry to hear how you’re struggling. I know it’s no small consolation but you are among many who are suffering being on these drugs. I’ve joined to FB groups, one of which is a Tamoxifen support group. The sad thing is these drugs are the only arsenal doctors have to give us. Until such time as we collectively speak up and out, and we would be a vocal bunch given the number of new diagnoses, things aren’t apt to change. When I asked my oncologist “what have you got TODAY to give me aside from Tamoxifen or Arimedex” he said “well studies are being done and things are in development”. Again I said “what have you got to give me TODAY” and he said “nothing”. After 25+ years this is their best defense?!? It makes me so angry!!!

  24. I am so glad to have found this website wo read about others going through what I am so I don’t feel so alone. I was diagnosed 2 1/2 years ago with metastatic lobular carcinoma and had a bilateral mastectomy. I was first diagnosed stage 2b and they took 2 lymph nodes out during surgery and both had cancer thus making it metastatic. I had 6 rounds of chemo/neulasta and then 28 radiation followed by 7 boosts. Now on Anastrozole. I had to go to my primary care doctor to get a scan as my oncologist did not think it necessary. I had no peace of mind until then. One day my oncologist said I was cancer free and I said no it is in my lymph nodes. I asked how we know how far it went because it was in both they removed. I was told they don’t know. But obviously, I am more concerned about it than then. I don’t have to tell any of you that cancer beats you up. I am now 64 and feel 84 most of the time. I am thankful to be alive and live with my loss of breasts. My surgeon must have been drunk or sleeping through my surgery and having had a total of 10 surgeries, counting my mastectomy, I am not able physically, mentally or emotionally to go through what would have been 2 more. My family is very supportive but I don’t think they can truly understand what any of this is like. Thanks for sharing your stories and we can learn from each other’s experiences and know that we are not in this alone.

  25. Hi , I had a double mastectomy with 1 lymph node positive 10 years ago . Have been on tamoxifin for most of the ten years .one oncologist tried to put me on aromisin but the mood swings etc were so bad I had to go off it. I then had two periods and found I had pre cancerous cells in my uterus so back on tamoxifin. Since they really don’t check your chest after a mastectomy and I had implants after two years I kept having ultra sounds done at my request . Found spots on my lung a few years later but they didn’t grow . In the last year one did . It’s back (mestatic breast cancer) . I don’t know what kind of treatment yet but it has been suggested that one of these aromitase inhibitors be used. If there is all these side affects n only 4 percent benefit why are they being used?

    1. Deb, I am sorry to read about your cancer recurring. Good luck on your new treatment. As for your question, not everyone finds the side effects intolerable and research does suggest there is benefit on staying on the drugs for some, but you’re right about the number who do being questionable. I don’t have the answers. Each person, along with her/his doctor must decide what’s best for her/him. Thank you for sharing.

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