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Should Certain Breast Cancer Patients Extend Endocrine Therapy Beyond Five Years?

Did you read the recent headlines about the newly released study concluding that even after women (in the study) completed five years of hormone therapy, their recurrence risk continued for twenty years and likely beyond? The implication is that women diagnosed with early stage, hormone-positive breast cancer and who are taking hormone-blocking drugs, should strongly consider staying the course beyond five years, or in other words, continue hormone therapy for ten years.

You might want to read and download, Endocrine Therapy – Managing & Making Decisions About Your Aromatase Inhibitor Medication.

My first reaction to such headlines was, didn’t we already know that breast cancer can recur decades later? 

Remember Olivia Newton John’s recent announcement? I don’t actually know what her initial diagnosis was or if she ever took hormone-blocking meds, so I probably shouldn’t cite her case, but you get my point. Recurrence can, and sometimes does, happen years later.

I’m not sure if there have been similar studies to the one I’ve cited above (and below), but this one seems to be a pretty big deal. Hormone-positive is the most common type of breast cancer, so there are a lot of women impacted here. The conclusions of this study are timely for me because as I write this post, I am contemplating whether or not to stay on my “chosen” aromatase inhibitor, Exemestane. I’ve also been contemplating (again) having the Breast Cancer Index Test.

I’ve completed seven years on an aromatase inhibitor, or as I like to refer to them, the drugs we love to hate. I’ve only got three more years to go. That’s not so bad, right? The end’s in sight.

Well, yes. But…

I have side effect issues and a new one was revealed following my last oncology visit. But enough about me. Back to this study…

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This study was fairly large, involving nearly 63,000 women who were diagnosed with early stage, ER+ breast cancer and who were all NED after completing five years of prescribed endocrine therapy.

The results of the study as stated in the New England Journal of Medicine were as follows:

Breast-cancer recurrences occurred at a steady rate throughout the study period from 5 to 20 years. The risk of distant recurrence was strongly correlated with the original TN status. Among the patients with stage T1 disease, the risk of distant recurrence was 13% with no nodal involvement (T1N0), 20% with one to three nodes involved (T1N1–3), and 34% with four to nine nodes involved (T1N4–9); among those with stage T2 disease, the risks were 19% with T2N0, 26% with T2N1–3, and 41% with T2N4–9.

The T stands for tumor and the N stands for nodes. Just in case you need a refresher in how breast cancer is staged, click here. And btw, in January 2018, changes are coming in how cancer is staged. (We can discuss that next year.)

Based on this study and other things I’ve read, here are some of my observations specific to this study, early stage, ER+ breast cancer and that five-year “all-clear” myth:

1. This study shoots a hole in the early detection messaging that is often misleading. 

And no, I am not saying early detection isn’t important. It is. However, it’s not all that matters. Tumor biology matters. A lot. As do other things, such as access to quality healthcare.

2. If your doctor or someone else suggests you are cancer free after five years (or ten, or fifteen or even twenty) think, red flag. 

As this study concludes, the idea of being considered cancer free after five years is simply not true when referring to ER+ breast cancer and both patients (including celebrities) and doctors need to stop saying/suggesting otherwise. Early detection, five years – neither guarantee that you’re home free. This is just reality. In some ways, this is the bigger part of this particular story.

3. It’s vital to have access to copies of your pathology report and other medical records for reference.

Our memories fail and our situations change, so we need to be able to go back and read reports. Just recently I did this and made a couple interesting discoveries, things I hadn’t thought about before. Hindsight sorta works like that, right?

4. You know your body and your situation best. 

If you’ve opted out of these anti-estrogen drugs due to side effects or whatever reason, that is your right. Quality of life matters. A lot. For some, the side effects of these drugs are just not tolerable. They definitely have a dark side. You make decisions that feel right for you based on information you have or had. Having said this and based on this study and other research, it’s important to also thoughtfully consider staying the course on these meds, if your oncologists advises this. Ultimately, of course, the decision is yours.

5. We must put more effort and more dollars into research in order to better understand everything about metastatic breast cancer.

We need to learn why metastasis happens, how to stop it or at least how to slow it down when it does happen and how to prevent it in the first place. Researching metastatic disease is key to finding answers about the full spectrum of breast cancer. We need more research specific to metastasis. Lots more. Metastatic research benefits every stage.

6. Don’t panic when you read studies, of any sort. 

Yes, this one’s depressing, but your absolute risk might be somewhat (or a lot) different. Studies are just that. Studies. And like I said, deep down, you and I already knew this risk for recurrence remains, if you’re on these drugs or not. These drugs are sort of like safety nets, and we all know safety nets sometimes fail. But sometimes they work too.

7. I didn’t see mention of treatment variables. 

How many of these women in the study had mastectomies vs. lumpectomies? How many had chemo? How many had radiation? Or both? What drugs specifically, were the women on? Does it matter if it was Tamoxifen, Arimidex, Femera or Aromasin? How many were brca+? How old were they? When were they diagnosed? And what about women like me (and perhaps you), who have taken one of these meds for six years? Or seven and then opt out? How is our risk impacted?

8. If you’ve been recently diagnosed with early stage, ER+ breast cancer, find out if having the OncotypeDX test makes sense for you.

I have regrets about not pushing harder for this test. It still feels like I am missing an important piece of information. When applicable, I feel the test should be offered to early-stage breast cancer patients as part of standard protocol upon diagnosis. (I think this is coming in the new staging guidelines I mentioned, but don’t quote me on that.)

9. You must be your own best advocate. 

There’s really no choice here. You have to become an informed self-advocate. This doesn’t mean going overboard. It simply means learn what you need to in order to make decisions you can feel good about. Ask questions until you’re satisfied with the answers you get. Share about your concerns and side effects. Do not suffer in silence. Ever. If you need help managing issues, ask for it. Don’t let your issues be brushed off. If you develop symptoms you’re worried about even years after a diagnosis, get them checked out.

You are the most important one on your medical team. Speak up. Speak out. Learn. Choose wisely. Do your best and then ditch any guilt. And remember, self-advocating is a skill. You’ll get better at it. You will.

Breast cancer is a smoldering, sneaky, insidious disease that is never truly over.

Are you nodding your head in agreement? Once you hear those words, you have cancer, you can’t go back.

This particular study further confirms this reality with this conclusion:

After 5 years of adjuvant endocrine therapy, breast-cancer recurrences continued to occur steadily throughout the study period from 5 to 20 years. The risk of distant recurrence was strongly correlated with the original TN status, with risks ranging from 10 to 41%, depending on TN status and tumor grade. (blue highlighting for emphasis is mine)

Not what we like to hear, right?

My oncologist has never suggested I am cured. We stick with NED (no evidence of disease). And it seems, this is the label we’ll be sticking with for quite some time. I’ll take it.

What now? 

I have an appointment with my PCP later this month. She continues to help me pick up the pieces and will hopefully help me make my final decision about remaining on an AI. I’m leaning toward staying on for the full ten years – if my bones hold out. (Along with a few other parts).

Now I’m wondering, what about after ten years? Are these drugs going to be a “life sentence”?

I can’t think about that now.

As my oncologist wisely suggested a while back, “Nancy, just think about this in short-term intervals. We can re-evaluate every six months.”

For now, that’s my plan.

If any of this is applicable, what’s yours?

NOTE: Please always keep in mind, my blog is not intended to be interpreted in any way as medical advice. What I do or do not do, is not necessarily what you, or anyone else, should do. Every person and every situation is unique. Your decisions are yours and yours alone to make.

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If applicable, is your breast cancer hormone driven?

If not, what specific type of cancer were you diagnosed with?

Have you been on a hormone-blocking medication and if so, how has that gone for you?

You might want to read and download, Endocrine Therapy – Managing & Making Decisions About Your Aromatase Inhibitor Medication.

Aromatase inhibitors, the drugs we love to hate.
Aromatase inhibitors, the drugs we love to hate. And we can’t forget their “cousin,” tamoxifen.



33 thoughts to “Should Certain Breast Cancer Patients Extend Endocrine Therapy Beyond Five Years?”

  1. I’m in the exact same situation. Over the summer, my doc agreed to a 2 month hiatus after7 years but I went back on Femara in August. I also did not have Oncotype Dx test. I’m contemplating Breast Cancer Index which I have brought up to my doc. The doc did not seem interested in that but I am. I would appreciate hearing more about this and may push to get it done. I’m having side effects that I can live with but if it’s really not making a big difference I would like to know.

    1. Teresa, I am presently on a one-month break from exemestane. I took a break due to some issues. I’m not sure if I’ll go ahead with the BCI test or not, at this point. Depends on out-of-pocket cost. Checking into things now. I’ll likely be staying the course on my AI because it’s what my oncologist recommends and I’ve done everything in my power thus far. But the side effects remain an issue, as they do for many and as you mentioned, it’d be nice to know if the drugs are truly making a difference. On the other hand, not sure that’s possible to truly know. Let us know if you do get the BCI test. Thank you for sharing.

      1. I would be interested in what your side effects are with exemestane. I was on Arimidex to start off
        with and had very unpleasant side effects as bone and joint pain and stiffness, depression, mood changes, headaches to name a few! I am now on Aromasin~~~~2 and a half months now and much more tolerable than Arimidex. I seem to be going from one stage to another thru the side effects and then it seems to settle down with each one. So far that is. Also I am having to pay over 200 dollars for this one for the 90 day supply with my Humana insurance and was 8 dollars with the the Arimidex. Hmmm~~~I am assuming because the Aromasin is a newer AI. I donot like the long term effects of AI’s on the bones ~~~I am now receiving Prolia injections every 6 months ~~~~and will deal with the side effects from this one~~~~just my input. Your website if very informational and supportive! Thank you!

        1. Nancy, My main concern is bone loss, as that change has been pretty quick and quite dramatic. I also now have arthritis with significant joint pain. I deal with fatigue, hair issues, weight gain and few other things. Often I hear, it’s just normal aging, but I’m not buying that, not completely anyway. As you mentioned, insurance coverage is now iffy as well; the drug I’m on may no longer be covered and it is very expensive.

  2. I’m working on a post about this article now. The problem is that the reporting on the article said something about hormone therapy, but the article itself did not. The article makes NO mention of the efficacy of long-term hormone therapy – it is was not something that was studied, and therefore, it is not valid to make comments about the efficacy (that is effectiveness) of long-term hormone therapy. The article also says that they did not track compliance of the 5 year therapy, just that to be included in the study initial 5 year therapy had to be assigned. That means that the numbers cannot say ANYTHING good or bad about the effects of hormone therapy on recurrence. I dislike how this is being used to push women into treatment options that may make their lives miserable and may not actually help.

    1. Rebecca, No mention of the efficacy of long-term hormone therapy was made in the study article, but the implication seemed pretty compelling. My oncologist has also suggested the research supports staying on for ten years, if the SEs are tolerable, and that is always the million dollar question. The most shocking part of the study, reaction-wise in the media and elsewhere anyway, seemed to be about the long-term risk that remains for decades. This might be the bigger “story”. Doctors and patients alike need to stop using the term cancer free regarding ER+ breast cancers post five years diagnosis. It’s an untruth. Thanks for sharing. You make good points. I look forward to your article.

  3. Oncotype Dx — I found this very helpful, as the benefit from Chemo would not have been that significant for me (depending upon what percentage one considers personally beneficial). However, I did have to push for this, as it was never offered or discussed; when I pushed, I finally got it, but even with the results, Chemo and every other treatment, was still pressure-pushed on me to the point that it felt almost abusive. I had already decided against Radiation and Chemo, but the test gave me greater peace of mind about those decisions.

    1. Maggie, Good for you for pushing to have the Oncotype DX. I’m glad it gave you greater peace of mind about your decisions. That’s so important. Thanks for sharing.

  4. I have used a “natural” blocker called Myomin since lumpectomy and Sentinel Node + one removal (all clear), and will continue for at least a couple more years. No side effects, and current labs, etc., look good.

  5. I had a mastectomy in 1984, at age 32. I had no further treatment of any kind, in fact after ten years my Gyn put me on Provera. In 2012, I was diagnosed with metasticized cancer to my bones. I’ve been on all three aromatase inhibitors, with varying side-effects since then. My oncologist now says I’ll be on them for the rest of my life. I hate them, the side-effects are awful, as you probably all know. But, I’m also NED. I have to weigh my options, and it’s not easy. Thanks for letting me share my story.

  6. I was diagnosed in 2015 and had a lumpectomy and 6 weeks of radiation. I had stage 1 breast cancer with clear margins and it had not spread to my lymph nodes. I was told it was a very slow growing cancer – a 1. I was on Anastrazole for a year with terrible side effects. I switched to Aromasin but it gave me massive diarrhea. Now I am back on Anastrazole and so far have been managing well with the side effects. I am going to finish my second year. I will try to make it through to five years, but 10 years? Absolutely no way. I am 67. I will take the risks instead of feeling old before my time!

    1. Patricia, Sounds like you’ve made up your mind. Good for you for being so decisive. But keep in mind, you might feel differently after you complete the five years. Changing our minds is okay too. Thank you for sharing.

  7. Oh, Nancy, you had to go and open up that darn pill bottle again. Yes, I am ER+, 98% to be exact. Mine was small, but invasive, no nodes involved, stage 1, grade 2, but there was also an atypical hyperplasia blah, blah, blah, another risk factor, that they said they might as well take out at the same time near the nipple (far away from the offending “tuhma”.) Pathology on the tumor said it was invasive lobular, not ductal like the biopsy indicated. Lobular is not as common as ductal and is very different and harder to detect on a mammogram. Plus I had dense breasts.
    Another risk factor.
    But no family history. None. That I knew of.

    But I was basically told I had the “good” kind of cancer once the pathology report came back from the lumpectomy/sentinal node surgery. Now I still love the breast surgeon who said that, I don’t hold it against her, and at the time, it was a “good” thing to hear when listening to all those other scary words. Your mind is blown by it all, so the word good, is well…..good to hear. Now, let’s keep this in mind, so far, I had not met the oncologist yet, I was still in the “honeymoon” period, I was still very naive. Breast surgeon says it was small, caught early, ER+, HER Negative, most likely won’t need chemo, just radiation and 5 years of some little magic pill. She was so nice and I trusted her.
    Almost a month later I finally meet my onco doc. I was not as impressed with his manner. But he did get me the Oncotype DX test, which takes about 3 weeks by the way, So be prepared to wait some more if you get it or push for it right away so you don’t wait around in limbo like I did. The waiting has been the worst.
    I am a person who likes to get things done and over with so I can move on. I had to realize that no one else is in a hurry, just me.
    My score was 19, so I was relieved to not have chemo, very, very relieved.
    But I did get 35 radiation whole left breast treatments. I got my “pink ribbon” within 8 days. OMG, I couldn’t believe the colors I was turning. And I never liked pink by the way.
    The one test that I did not “fit the criteria” for was the BRCA test. The counselor said she would push for it if I wanted, but she didn’t know if my insurance would pay and I had to make a decision before the end of the year if I didn’t want to pay more next year. It was December 27th, I had a couple days to decide. I chose not to decide, and I still regret that choice. Maybe someday I will push.
    Okay, back to the subject, I started anastrozole the day after my last rad treatment. I was finally moving forward! I gratefully took that little white pill with gusto. Hell, this is great, I can get back to life.
    Sure, I had hot flashes, I had already done that 6 years ago, but it wasn’t all that bad for me. I was lucky that way. I had some humdinger headaches, brain fog was thick and murky some days, had some extra aches and pains, but they would move around, one day here, the next day there.
    I had trouble sleeping, well, I had trouble going to bed and then falling asleep. Or maybe I was trying to make up for lost time, all the time I had lost wallowing
    in bed in my “toga” rubbing aloe, aquaphor and miaderm on my flaming boob.
    I had been on the little white pill, my saviour, my safety net, the pill that would make sure no cancer came back, for almost 5 weeks.
    OMG, then it hit me. Once I finally fell asleep,
    I would wake up in raging numbness and pain in my hands and arms. WTF……..
    I had finally given up my obsession with googling everything and now I had to start over again. The pain and numbness was intense. And it happened fast.
    And then I read the handout the onco doc gave me for the anastrozole.
    The last thing , the very last sentence, the very back page, where it says uncommon side effects,
    there it was
    carpal tunnel syndrome.
    There it was……….
    So, all my 6 week follow up appointments were within the next 2 weeks. Of course I mention my suspicions to all my docs. Not one really validated the thought and reminded me that it may take some time to get your body used to the drug, but it is usually “well tolerated”. What a crock of #$%^Onco doc just smiled condescendingly and said ‘Oh no, that is not a side effect”. Yup, said it right to my face, he did. He gave me the effing paper that said it was!
    You know what I said? Nothing……..I clammed up tight. I was darn sure I didn’t like him at the very moment. And I said nothing…………that’s not like me by the way……
    But I tried……..
    I tried so hard to not hurt, I tried to will it away……..the pain…
    I just needed to take this pill for 5 years, my body will get used to it in a couple weeks or so………hmmmm…………it just got worse……….I kept giving it more time, more months, until 8 months had passed. I got the nerve conduction test…………..
    I laughed and giggled at first, that made the doctor laugh
    it was soooo weird…………it tickled.. and then they turned up the power…………….
    yup, the shocks get stronger..
    until you jump on the bed……….
    yuup, like in the movies………….think about it…………zapped……
    flying off the table………..okay, I am being dramatic now. It is described by the medical community as “uncomfortable” and “unpleasant”.
    It is all that, by the way……………
    Severe carpal tunnel in the right and mild in the left. Suspicion confirmed.
    Next was surgery. It’s been 4 months since the surgery and now I believe I have
    de Quervains in the right wrist and thumb. Got an appointment with the hand doc in 2 days.
    Went to onco doc 2 days ago and he still sits there on his stupid computer in front of me saying hmmm, that is a very uncommon side effect, like he still didn’t believe me.
    I am very, very sure I don’t like him and every time I see him, I wonder if this is the day I will fire him.
    It wasn’t, I held my tongue. I just nodded when he politely told me, just keep taking the letrozole and we will see you in 6 months………sigh………..
    I had another 6 month mammogram last week. They ravaged my poor boob……whew, it really hurt……….I knew I had to let them do it it, so they could see thru the denseness and the scar tissue, OMG, she crushed me!! But after, I waited in the waiting room for 10 minutes….. or hours,
    she finally came in with thumbs up!
    Yay! oh, yes, we’ll see you in 6 months..sigh
    I was sore for days………
    But back to the moral of the story……5 or 10 years on a toxic substance that has elevated my cholesteral, liver enzymes, anxiety, pain, sleeplessness, pain, forgetfulness, pain……guilt…..grinding bones ………….how much more can I put my 55 year old body thru? PCP is threatening a statin in January. Alas, If only I could lose about 50 lbs. If only I didn’t feel 90 years old in the morning.
    Now please don’t get me wrong,
    I do feel lucky,
    I am extremely grateful,
    so many don’t have this choice,
    I feel guilty for complaining,
    I don’t like to whine,
    I want to take the pill,
    I don’t want to hurt,
    I don’t want cancer again………
    but there is the rub………
    there are no guarantees
    it might all be in vain,
    we are all in hopeful limbo,
    while we drag ourselves to the battle every day,
    whooping the war cry……
    they keep playing the Ibrance commercial every night, many times a night,
    So and so has metastatic breast cancer, so and so is finding her “new normal”,
    She does look so happy though, she seems so normal…………
    How come I can’t do cancer like she is, she could die tomorrow., she looks normal.
    she is far worse off than I am,
    what a weeny I am….sigh…….I know she’s not real, but……….MBC is very real and once you have just a little bit of cancer, MBC always lurks in the back of your mind. They use letrozole to shrink tumors too, so I had better learn to tolerate it , just in case. You never know, the doctors don’t either. We are all just statistics.
    With fuzzy percentages to base a very important and possibly damaging decision on. It’s just not fair.
    I don’t think I will make it 5 years..but I am doing the 6 month plan too Nancy,
    I have completed 13 months and will strive for the next 6 months, I will probably have more hand surgery, I will probably endure more pains and aches, but I will keep trying.
    But I can’t even think about 10 years. Oh my, no way. Let’s just see how the next
    6 months go……
    Oh and one last thing, I am sorry to be such a blog hog.
    I am so very sorry to hear about the recent silencing of a couple of those voices that have brought me to this page today.
    Real woman, with real cancer, with a sense of humor and without the pink frosting.
    I so appreciate them sharing their lives with us
    for being outspoken, for telling the truth.
    I can only hope that what every woman shares out loud
    will help another woman cope, or just know she is not alone,
    and hopefully help science find a cure or better yet, a prevention.
    I can only hope that in 5 years, everything will be different, better,
    with more options that don’t hurt so much
    and let’s hope in 10 years, well…………

    1. Tarzangela, That was quite a comment! You’ve been going through a lot. Guess we’re both sticking with the six-month plan. And btw, you’re not a weeny. Thanks for sharing and good luck with everything.

  8. Thank you for this post. I am ER/PR +ve (T2N1). I have bilateral cancer and elected not to have a mastectomy b/c the cancer in the 2nd breast was small (I call it my lentil cancer). I’ve had 3 years on Tamoxifen and recently switched to Letrozole (AI inhibitor). I have had side-effects from both drugs, but I am tolerating them. Since my diagnosis, I have been frustrated by how the “numbers” are presented. When I was first diagnosed the knowledge that I had a good prognosis for 5 years (90%) lessened the trauma, but now that I am 3 years post treatment, those numbers don’t look as attractive. I find it challenging to talk to my oncologist about this. The paradigm is always “glass is half full”, don’t focus on the negative. While I respect that many patients don’t want to hear their full prognosis, I do. Thank you for sharing, I’m taking the article from the NEJM to my next appt.

    1. Wendy, Sometimes it is challenging to have frank discussions. Wanting to hear the whole truth is not being negative. My oncologist has never used the cure word with me, but I know some still use it after that five-year mark, which is really a disservice when talking about ER+ cancers. It’s important to note the article did mention the recurrence risk was very much linked to original tumor biology and therefore risk varies a lot. So that’s something to keep in mind too. Thank you for sharing. Let us know what happens when you share the article.

  9. I was T1N0 5 years ago, had the Oncotype test since I was also grade 3, and did chemo after the Oncotype showed high risk. I just completed 5 years mostly on Letrozole, although I was on Anastrazole for about 15 months during which I developed retinal disease attributed to AI’s by the opthalmologist, as well as arthritis. I already had osteoporosis before starting AI’s but could not tolerate bisphosphonates but was able to reverse the osteoporosis taking a group of OTC supplements including strontium citrate that were outlined in a research paper by two Canadian doctors. But, I’ve developed vaginal atrophy, have had no libido for most of the 5 years, chronic insomnia that I’m certain is related to the memory loss I’ve experienced which has made work much more difficult.
    Both my current and former MO were okay with me deciding not to continue with AI’s; the current one had suggested the BCI test but the HMO doesn’t pay for it. I read into it and after contacting my former MO decided that although it may be a predictor of recurrence risk, the problem with AI’s is that the MA-17R study published last year showed no survival benefit at 10 years. The biggest benefit was in reduction of new cancer in the same or other breast. The Medscape article I read summarizing reactions of numerous notable MO’s to the MA-17R study was informative for me; I agreed with one doctor’s opinion that the data needs to be parsed out so they can see who the very few women who benefited were – were they people with heavier nodal burdens? If so, those people may want to weigh the risks vs benefits. For someone like me, who already did chemo to reduce my distant recurrence risk, it’s harder for me to justify continuing on this toxic drug. Nevertheless, I know I still have a risk, somewhere between 15-18%, and this will likely haunt me for the rest of my life.

    1. Kathy, You make excellent points. I would also like to see the data parsed out so we can figure out exactly which patients benefit from these drugs. Sounds like you’re comfortable with your decision to not continue on an AI, so that’s good. As you said, the risk is always there and even if it’s not a great risk, it haunts. Thank you for sharing.

  10. Thank you for this wonderful information. I am guilty of not getting pathology reports, although I did write down the type of cancer, etc. AT the end of my treatment, my wonderful oncologist moved and I got oncologist #2 who is okay, but not as easy to talk with. Anyway, #2 said she that I was on an aggressive post-treatment plan – 10 years of Anastrozole and Zometa treatments for osteoporosis (which in addition to treating osteoporosis, helps fend off cancer radicals. I am very lucky; I tolerate both medicines well. I sometimes wake up with hip pain – and of course, it scares me to death because I think it’s in my bones – but it goes away the minute I get out of bed. At 62, I think it’s arthritis. BUT I am very good at being an advocate for myself. And it paid off when I complained enough about fatigue after a year of recovery and they finally did an MRI and discovered a benign brain tumor. So, yes, advocate! And I love and agree with the person above who commented on the commercial for MBC; how can someone look like that when we all know how devastating that would be.

    1. Linda, You can still get your pathology report (and other reports) if you want them. And if you set up a patient portal (if this is an option), you can read a lot of your reports online. I really like being able to do this, and it’s interesting to go back and re-read them. Helps connect the dots sometimes. I’m glad to hear you are tolerating both drugs well. Good for you for advocating so vehemently and discovering that brain tumor. Thank goodness it was benign. And yes, that commercial. Ugh. I must write that post about ads. Next year. Hopefully. Thank you for sharing.

  11. The AI issue is an important one for future research and trying to find a better way for ER+ breast cancer, so it is good to see this debate out there. Thank you Nancy. As an intelligent doctor said to me recently, for many women it is like cracking a nut with a sledgehammer. We are not all at high risk, but we are treated all the same just in case with potentially severe side effects as there is no other real alternative. I also think the symptoms on these drugs are often dismissed as older women’s problems (i.e. not relevant), when in fact they are really quite serious.. We need to speak louder. Prof Blaustein (a neuro scientist specializing in hormones and the brain) is beginning to raise questions. Estrogen removal has a huge impact and we need to weigh up the risks – the absolute risk. It is a decision each woman should make intelligently, of course. For some it is a life saver and stops the disease. But for others maybe it needs more questions to be asked and for our ‘team’ to engage. Prof Blaustein’s comments are here

  12. I am taking letrozole, 16 months left to go to reach the five year mark. Will I continue? Probably not, the side effects are mounting and my quality of life seems to be headed downhill.
    Here’s another study, small but interesting if you read the article and then check out what a couple of doctors have to say in Correspondence.

  13. I’m pretty new to all this as I was diagnosed back in April with ER and had my lumpectomy with radiation in June (stage , 1 node that was clear). I started on Letrozole the end of October – so far the side effects are mild however, I am very concerned with all that is reported that could occur. I really didn’t want to start taking this medication and I still may stop due to all my concerns. I take a lot of vitamins and supplements on a daily basis along with a 4 day a week work out plan with weights, aerobics, etc that I don’t want to give up because of the pain that I keep hearing about. I also had the bio test on my tumor that came back as low probability of coming back.
    I guess my point is now that I’ve read the additional information on how this cancer could come back weather I take this medication or not then why am I going to put myself through all this? Oh great no cancer but now my liver shot, broken bones, over weight, and the list goes on! I’m not sold on all this and feel that there has got to be something better that is available!
    Thank you for opening this site for everyone! The information is so valuable!!

  14. Hi Nancy,

    As you know, I had to be taken off AIs due to quality-of-life issues. I don’t know what to think about the new guidelines. I wonder if I’m now at more of a risk of recurrence for not continuing them. Then, and I know this sounds paranoid, I wonder if Big Pharma is behind extending the number of years people need to take the meds. Who knows? Thank you for providing such an educational post on an important topic.

  15. Hello..I was diagnosed on my birthday this year…yay. I had a unilateral mastectomy. Tumor was stage 1A Grade 2 onco type score was 19. I am told likelihood of recurrences is low. I have been on Anastrozole for approx 1 month. I had multiple surgeries due to breast expander infections. This drug is making me miserable. I had both knees replaced due to arthritis of the knees. Since being on this drug, I feel like they were never replaced. They HURT. My feet hurt, my wrist hurts, I can’t sleep. I am going to talk to my oncologist…if my recurrence rate is supposedly low, can I just not take these pills? I am 57 and I was told I would be taking this for 10 years.

    1. Kristyn, Cripes, what a birthday present. Ugh. I’m sorry you’re dealing with all this. Definitely have a frank discussion with your oncologist. You need and deserve validation and help in managing side effects. My best to you.

  16. I was diagnosed in October 2016. Had a lumpectomy, radiation and have been on Anastrazole since August or September of 2017. I am thirsty all afternoon and evening and my hair is wispy thin. But I have a 13 year old. I’ll suck it up and do the drugs so I can be here for him. 10 more years of this crap. Yuck. And I’m really tired of people telling me how “cute” my hair is. I hate, hate, hate it.

  17. My cancer is/was T1N0. I had a lumpectomy exactly 1 year ago. I had the Oncotype DX test and was given radiation but not chemotherapy. I was prescribed Anastrozole for 5 years. I stopped taking it after 6 weeks. The side effects were horrendous and I’m no wimp. I was a firefighter for 23 years. Before the diagnosis I was maintaining 2 1/2 acres and an old house by myself. I am 59 years old. It has taken me 6 months to get back to feeling “normal”. This is so hard. I wonder whether a double mastectomy would have made more sense. They offered it. At the time I had confidence in the drug and had no idea how awful it is. I was told the hot flashes would come back (I’d been on HRT for 7 years) and I might experience dizziness so I should take it at night. A month in I couldn’t get out of bed and when I did I hurt too much to make the bed. I went to stay with my nearly 80 year old parents because I felt like I couldn’t do anything for myself and I was scared. I finally figured out it was the drug and stopped it. It’s so hard to know what to do. I want to be alive to help my parents when they need me and I’m afraid the cancer will come back. However, I don’t know how anybody functions on this drug. I’ve gone vegan. I’m taking all the hoodoo voodoo adaptogens. I’ve gained 40 lbs and I’m trying to lose it. Emotionally, I’m still a mess. I haven’t followed up with my doctor. I’m an adult woman that’s afraid to tell him I stopped the med and I’m afraid he will put me on another one that is no better. I don’t have a husband or children or grandchildren so I have to decide what to do based on my aging parents and my own quality of life. I feel like I’m flying by the seat of my pants.

  18. I would like to read the comments by Professor Blaustein does anyone have a link? The one posted by Anais no longer goes to his comments. Thank you.

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