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Endocrine Therapy: The Ultimate Guide to Managing & Making Decisions about Your Aromatase Inhibitor Medication

Endocrine therapy continues to be a topic of great interest to many readers. Information and feedback from women taking these drugs is lacking, hence this post. I updated and bundled my most relevant, helpful (hopefully) posts into this one. This makes access to the info a bit easier. It also makes this post long!

To get this post emailed in pdf format to read later at your convenience, click here.

Disclaimer:  This post is not intended to be a substitute for medical advice. It’s merely another source of information to help you better understand, manage and make decisions about endocrine therapy. The information in this post is primarily targeted for those diagnosed with early stage, hormone-positive cancer, though sometimes these drugs are used in combination with others to treat certain metastatic breast cancers too. Regardless of stage or type of cancer, please discuss all concerns with your doctor.

Topics covered in this post:

Click on links below to jump to that section:

What Is Endocrine Therapy?

Nasty Side Effects of Aromatase Inhibitors

Aromatase Inhibitors, My Experience

My Experience with Aromatase Inhibitors, an Update

Hitting the Five-Year Mark of Endocrine Therapy, Now What?

Should You Extend Endocrine Therapy Beyond Five Years?

Should You Take a Break from Aromatase Inhibitor Medication?

13 Tips to Manage Side Effects from Aromatase Inhibitors

How to Talk to Your Doctor About Side Effects from Aromatase Inhibitors—8 Tips

Final Takeaways

What Is Endocrine Therapy?

Endocrine Therapy: Managing & Making Decisions About Your Aromatase Inhibitor Medication #breastcancer #hormonaltherapy #cancersurvivor #AIs #endocrinetherapy #womenshealth

Endocrine therapy, also known as hormonal therapy, is treatment used for many early stage breast cancers that are estrogen and/or progesterone positive. When given before surgery to shrink a tumor, it’s called neoadjuvant hormonal therapy. When given after surgery, it’s called adjuvant hormonal therapy.

Tamoxifen, aromatase inhibitors and specific drugs used for ovarian suppression are types of hormonal therapy. This post focuses primarily on aromatase inhibitors.

What are aromatase inhibitors?

Many breast cancer tumors are estrogen positive (ER-positive), progesterone positive (PR-positive), or both (ER-positive and PR-positive). Mine was both.

This information about your tumor(s) is provided in your pathology report, and you simply must have a copy of this report in your possession so you can familiarize yourself with your own unique cancer’s biology, even though this might sound like the last thing you want to do after your diagnosis.

Be sure to ask for a copy if you didn’t receive one. If need be, you can do this years later.

If your tumor is/was ER and/or PR positive, your oncologist might very likely prescribe an aromatase inhibitor after surgery, chemotherapy or radiation as part of your adjuvant therapy treatment plan. The intent, of course, is to prevent recurrence.

There are three aromatase inhibitors (referred to as ‘AIs’ from here on out) that have been FDA approved:  anastrozole (Arimidex®), letrozole (Femara®) and exemestane (Aromasin®). Throughout this post, I sometimes use the chemical and brand names (in parentheses) interchangeably.

Basically, these drugs block tumor growth by lowering the body’s natural supply of estrogen.

How do they do this?

These drugs inhibit the food supply (estrogen) to the tumor because they block the aromatase enzyme, which is needed for the production of estrogen.

Hence the name, aromatase inhibitors.

AIs are often prescribed for post-menopausal women because they don’t block estrogen produced by the ovaries but do inhibit estrogen production in other body tissues such as in the kidneys and liver. If you’re not post-menopausal, the benefit’s not there.

For pre-menopausal women with estrogen positive cancers, Tamoxifen is the recommended hormonal adjuvant therapy drug most often prescribed. Tamoxifen blocks estrogen’s effects by its presence in the cancer cell’s estrogen receptors.

However, based on the SOFT (Suppression of Ovarian Function Trial), if a pre-menopausal woman’s ovary function has been medically suppressed, she may (or may not) be offered AI treatment for hormone-positive, early stage breast cancer as well.

Doctors often prescribe one drug, tamoxifen or an AI, for five years. This is called monotherapy. Sometimes a patient is offered tamoxifen for two or three years and then is switched to an AI. This is known as sequential hormone therapy.

Studies seem to indicate the effectiveness of the drugs in preventing recurrence is pretty much the same. However, there are chemical differences between the three AIs, so some doctors prefer prescribing one over another depending on a patient’s situation, and some patients do better on one over the others.

One large study called the MA.27 compared outcomes and side effects for women treated with exemestane and anastrozole for five years after surgery for hormone-positive, early stage breast cancer.

Disease-free survival was the same for both groups, but there were some differences in side effects. One example being, osteoporosis was reported slightly less frequently for patients taking exemestane than those on anastrozole.

AIs have become standard treatment for adjuvant hormonal therapy for many post-menopausal breast cancer patients; gotta shut that estrogen production line down—and that’s what AIs do quite successfully. However, this does not happen without unpleasant consequence for many women.

I clearly remember the day oncologist number one showed Dear Hubby and me all those mind-boggling, ten-year survival odds charts. The charts “said” if I agreed to add Arimidex® as part of my adjuvant treatment plan, I would supposedly gain another six percentage points for my staying-alive plan.

I was on board. I wanted those additional six percentage points on my side. Who wouldn’t?

What about men who are diagnosed with hormone-positive breast cancer?

Approximately 1 in every 100 cases of breast cancer occurs in men. Data and trials regarding male breast cancer remain limited.

The good news is that evidence that does exist seems to suggest that drugs approved for the treatment of women diagnosed with breast cancer also seem to be effective and tolerated by men. However, more study is definitely needed. But yes, men are often prescribed these drugs as well.

Guidelines can be found here:  ASCO recommendations for adjuvant endocrine therapy for women with hormone receptor-positive breast cancer.

To get this post emailed in pdf format to read later at your convenience, click here.

Nasty Side Effects from Aromatase Inhibitors

Endocrine Therapy: Managing & Making Decisions #aromataseinhibitors #hormonaltherapy #breastcancer #arimidex #aromasin #femera

Side effects are a serious quality of life issue for many women on these drugs

However, every person is different. So, if you’re just getting started on one of these drugs and you’ve heard horror stories about unpleasant side effects, don’t assume you’ll experience the same.

Having said this, some of the side effects are fairly common and even somewhat predictable.

Generally speaking and maybe even mildly comforting to know (then again maybe not), the side effects of all three AIs are similar though not necessarily identical.

The main and most often reported side effects are:  joint pain, muscle aches, bone loss, bone fractures, lowered libido, hair loss/thinning, weight gain, hot flashes, mental fogginess and sleep issues, to name a few. (Like we need more, right?)

And of course, some of these same side effects also affect some women taking Tamoxifen.

Unfortunately, the side effects are not always adequately addressed, if at all, by oncologists. This is too bad because side effects can, at the lesser end of the spectrum, be highly annoying and at the worst end, be extremely debilitating.

I speak from experience, as I have had some difficult side effects myself.

Many women hesitate to talk about the nasty side effects of AIs because they don’t want to be perceived as complainers or whiners.

However, if you don’t speak up, your doctor will naturally assume (and rightfully so) that everything’s fine. If a whole bunch of us don’t speak up about whatever the issue might be, why should we expect things to ever change?

It should also be noted that such drugs are also sometimes used for other purposes, such as treatment of metastatic breast cancer and for preventative (risk-reducing) purposes.

AIs have been proven to be effective in preventing recurrence. This is a good thing, and it’s important to take a medication and keep taking it if one has been prescribed for you and IF you are able to tolerate it and choose to do so. And yes, the latter is a pretty big if for some.

I am not suggesting and would never suggest that a woman do otherwise.

The AI drug of my original oncologist’s (I’ve had five oncologists due to various reasons; trust me, I’m not that difficult a patient) choosing was Arimidex®. I started on it shortly after finishing up chemotherapy and was on it for roughly two and a half years.

Aromatase Inhibitors, My Experience

At every oncology appointment since I began my adjuvant hormonal therapy, I have been asked the same question.

You might very well know the one, are your side effects tolerable?

This is such a loaded question. It’s also an unfair one as it can place guilt on a patient by making her wonder why she isn’t more capable of better tolerating the “inconveniences”.

Finally, after those first two and half years I said, “No, they are no longer tolerable.”

Stating this was really hard for me, and it was a very unpleasant appointment for a whole variety of reasons that I won’t go into here. But, I had reached a breaking point as far as side effects go.

What were/are my side effects?

Shortly after I began taking Arimidex®, sleep issues due to leg pain and leg cramps (to name a couple) started up. Aches and pains in my joints/bones became significantly bothersome 24/7. I began to feel like an eighty-year-old woman when trying to get out of my car, rise from a chair, sit through a movie or just move around, period. In addition, quite quickly after beginning on the drug I gained fifteen pounds. Next, I was diagnosed with osteopenia (bone health previously was excellent). A few months later, it became nearly impossible for me to walk to the stop sign at the end of my street because of the crippling effect on my feet and toes. Before the drug, I was walking two to four miles a day.

I got (still get) pretty annoyed when my issues were brushed aside or attributed to normal aging.

I just didn’t/don’t buy that.

Why not?

Well, because I’m not that old, because I know my body and because I can pinpoint when my side effects/symptoms kicked in.

The bottom line is, these issues became bothersome enough that I finally said, enough, and forced myself to finally admit (to someone other than Dear Hubby) that the side effects were no longer tolerable.

This is a difficult thing to admit to your oncologist; at least it was for me because my oncologist was adamant about me staying on Arimidex®.

I felt damned if I did and damned if I didn’t.

I wanted, and still want, no regrets down the road. After all, I have done everything in my power thus far to keep the cancer beast at bay.

Why would I stop now?

Sometimes you have to listen to your body. Sometimes you have to follow your gut. Sometimes you have to take a break.

I share about my experience with AIs for the same reasons I share about so many things, in the hope that it might help others feel less alone and more empowered to not suffer in silence.

I know many women out there are suffering in silence. Never do that. Just do not.

At nearly every support group meeting I attended (I’ve since stopped going to meetings, for the most part), the conversation always circled back to the side effects of these drugs. Someone always brought it up.

I received an email a while back from a woman who wished to remain anonymous, but she gave me permission to share her reasons for keeping quiet about side effects. She had this to say:

… the most troubling side effect is my lack of libido. Not only do my oncologists seem lost about this troubling effect, I don’t feel worthy enough to really push to get answers because 1) It’s embarrassing and 2) I feel lucky to even be alive. I feel like this side effect is small in comparison to what other women are going through. I just needed to share this with you.

Again, there’s that guilt thing and not feeling worthy to discuss bothersome side effects with one’s doctors or push for answers is just wrong.

I also know that patient adherence is a huge issue with these drugs. Many women are not taking their little white pill for the recommended five years.

Is this a problem?

Of course, it is.

Do I understand why so many women stop?

You bet I do.

I admit, I have seriously considered being deceptive about my own adherence. I have considered tossing my little white pill in the trash while pretending to take it.

Can you believe that?

Ultimately, I decided the heck with that nonsense.

So, what did I do?

I stayed off all AIs for two months. I wanted to see how my body responded. I wanted to see if things improved. I wanted to see if I started feeling better.

My oncologist (number four) did say to me, “Nancy, you won’t go back on if you go off because you WILL start feeling better.”

That logic seemed quite twisted to me.

I didn’t necessarily agree with the not going back on part of her prediction, and that was one reason (only one) why we parted ways.

So, I detoxed for a bit and then switched to exemestane. For me, taking a short break and then switching things up and trying a different drug was the best option.

I was comfortable with my decision. It felt reasonable.

But I wish there were better options. Women deserve better options.

Doing everything in my power to prevent recurrence matters – a lot, but my quality of life matters too. Yours does too.

Why must I choose between the two?

Why must you?

 Why must anyone?

My Experience with Aromatase Inhibitors, an Update

Endocrine Therapy: Managing & Making Decisions about #aromataseinhibitor #medications #breastcancer #survivorship #sideeffects

I feel a responsibility to share not only when things are going poorly, but also when things are going better. I can honestly say that things have gone better for me after the AI switch up. The decision to switch was a good one for me, and I am sharing about it because doing so might be an option someone else could consider before throwing in the AI towel. Switching oncologists was an equally good idea.

No one’s side effects should be dismissed or brushed aside as just things one needs to live with. Too many women (and men) do still suffer in silence and hesitate to bring up side effects that are difficult to talk about and/or manage.

That attitude of, well you’re alive, so maybe you should just be grateful, content and quiet is out there. I have actually had such a thing said to me (not in those exact words), by a physician, no less.

Have you ever been made to feel badly about not tolerating side effects?

Not a good feeling is it?

Instead of being asked if side effects are tolerable, I would like doctors to say things like, tell me about your side effects (if any) and which ones you find most difficult to manage. I want to help. Let’s see what we can figure out together to try to make things better.

And as always, the mere validation of a patient’s feelings, pains, concerns, fears, side effects or whatever it might be, means more to patients than most doctors might realize.

Every individual is unique and every person must evaluate and decide how to answer that ‘is it tolerable’ question.

Since starting exemestane, my joint pain has lessened substantially, though it has not by any means disappeared. I am back to exercising regularly and can walk without debilitating discomfort, which is what I experienced while on anastrozole. I still have chemo-induced neuropathy issues in my feet, but the discomfort in my feet and joints is not what it was before the swap.

The primary side effects for me at this point are weight gain, hot flashes, hair loss, osteopenia (this one is most upsetting) and sleep issues; all highly annoying things, but tolerable. I guess. For now.

An important suggestion for anyone on AIs who is dealing with joint pain is to be sure to have your vitamin D level checked and monitored. For quite some time following chemo, mine was horribly low and may have been partly to blame for my general “not feeling well” state and also may have contributed to intensifying joint pain.

Low levels of vitamin D can cause joint or bone pain and a feeling of malaise. Your calcium level needs monitoring as well if you’re taking Vitamin D supplements, because sometimes supplements cause a higher than normal calcium level. This happened with me.

I hate the little white pills some of us are forced struggle to take. I hate the side effects and how they inhibit my quality of life and how I feel when I look in the mirror these days as a direct result of taking them.

If you are struggling with side effects from AIs (or any drug) and contemplating discontinuing use, you are not alone.

Endocrine Therapy: Managing & Making Decisions About Your Aromatase Inhibitor Medication #breastcancer #hormonaltherapy #aromastaseinhibitor #medication #survivorship

Hitting the Five-Year Mark on Endocrine Therapy, Now What?

It’s been eight years for me on an AI, and I am going to hang in there. However, I want to stress that my decision should not necessarily be your decision. Believe me, I get it if you decide something different. I totally understand and respect the decisions others make regarding these meds.

Many women (and men) do not stay on for the full five years, much less beyond five years. Some of us, me included, take breaks. Others skip a pill here and there. (Yes, I have done that). Still others, pop that darn little white pill no matter what and do not understand how anyone could consider not doing so.

We are all different. We all experience different side effects and some don’t experience any at all

So why am I continuing?

First of all, I have done everything in my power to keep the cancer beast at bay. Bilateral mastectomy, ✓. Chemotherapy, ✓. Ovaries and Fallopian tubes yanked out, ✓. Uterus removed for good measure, ✓. (Yes, there was no real consensus on the value of doing this part, but…). AIs for five years, ✓.

And now my oncologist is recommending that I stay the course. I trust him. I have to.

I’m BRCA2+. Do I have a greater chance for recurrence?

Supposedly not, but I can’t help but think about my mother.

So, those are my reasons, for what they’re worth.

I do not like the side effects of these drugs. At all.

My hair (what’s left of it) is awful. I often feel de-feminized. My joints hurt. I have bone loss. I struggle with fatigue, weight gain and other side effects

And yet…

I’m continuing for a bit longer because I hate cancer more than I hate these AIs.

And again, this does not mean I am suggesting my decision should be your decision.

To be honest, if I were living in a cocoon, I would likely opt out.

My oncologist suggested this:

My advice is to continue, but tackle this in smaller time frames. Forget about staying on another five years. Tell yourself you’ll give it a try for another three months and then revisit.

I like that advice, so I’m sharing it with you.

I’m going to take it.

For now, it’s one day at a time.

I guess it always has been.

Should You Extend Endocrine Therapy Beyond Five Years?

Recent headlines about a study concluding that even after women (in the study) completed five years of hormone therapy, their recurrence risk continued for twenty years and beyond caused a stir.

The implication was 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.

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

Hormone-positive breast cancer is often touted as the most easily treated, most survived form of the disease. Nonetheless, it is also a kind that can, and sometimes does, recur decades later.

This study was fairly large, involving nearly 63,000 women who were diagnosed with early stage, ER+ breast cancer and who were all NED (no evidence of disease) 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.

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:

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

This study further confirms 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.

Not what we like to hear, right?

The idea of being considered cancer free after five years is simply misleading and potentially 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.

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

And this is why weighing the pros and cons of staying the course on endocrine therapy is such a dilemma for many women, including me.

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. 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 oncologist advises this.

Ultimately, of course, the decision is yours and yours alone.

This means there’s no choice. You have to be your own best self-advocate here too.

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. Share about your concerns and side effects. 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.

To get this post emailed in pdf format to read later at your convenience, click here.

Should You Take a Break from Aromatase Inhibitor Medication?

Everyone deserves validation and when applicable, assistance in managing side effects. Make sure your doctor knows about your concerns and issues.

And simply asking if your side effects are tolerable is NOT offering assistance.

So, don’t settle. Start with being frank—discuss your issues and yes, I know it’s not always easy. Get validation. Then discuss options. Then make decisions that are right for you, including taking a break.

If you are struggling with side effects on your AI medication, what are your options?

There aren’t that many good ones, but here are a few:

  1. Basically, you can stay the course and put up with the side effects, until you can’t, or until your ten years are up, whichever comes first.
  2. You can try doing some things that might help. More on that below.
  3. You can consider taking a break now and then. Of course, you should discuss this first with your oncologist.
  4. And of course, you can say, ENOUGH, I’m done and stop taking them. It’s your call. And no one gets to judge you for it.

Now, let’s talk about #3—the possibility of taking breaks, which was studied and the results presented in this article, Intermittent Letrozole Similar to Continuous Administration for Extended Breast Cancer Therapy.

This recent study took a look at 5,000 postmenopausal women who had been diagnosed with hormone-positive, early stage breast cancer and who had completed five years on endocrine therapy (aromatase inhibitors). Half of the group was randomly chosen to receive continuous letrozole (anastrozole), meaning every day. The other half was put on an intermittent cycle, meaning daily for nine months, followed by a break for three months. That was for years 1-4. During year five, treatment was daily again.

Speaking as someone who has taken a couple short breaks, this idea makes a lot of sense to me. My breaks have been relatively brief, one being about a month and another about two months. I admit, I’ve also just skipped a pill here and there sporadically. Just because I hate them.

Every time I have taken a break, perhaps like you if you have done the same, I wait. I wait to see if I start feeling better. And then I wait a little longer. And then a little longer. And then, I start to worry about staying off too long and head on over to the cupboard where I store the darn pills and start taking them again.

Here’s the thing, my breaks haven’t really been for that long. So, I’m not sure if I truly started feeling better or not.

Taking a break for three months in years 1-4, would certainly seem to give a person a better idea about if she were feeling better or not. In 90 days, you could probably feel a big difference. Or not. Either way, it might help you figure out what you want to do.

The results of the study were perhaps not striking as far as QOL improvement. However, and most importantly, there wasn’t much difference in disease-free survival at the end of five years for the two groups, so maybe the results are striking, after all. Depends on how you look at things, I guess. As the above-mentioned article states: 

During a median 5 years’ follow-up, the primary endpoint—disease-free survival—was similar between groups (86–88%). Quality-of-life measures like vaginal problems, sleep disturbances, musculoskeletal pain, mood, and physical well-being were slightly better in the intermittent therapy group at 12 months.

For some women, this might be something to try because a slightly improved quality of life might be a huge deal. Knocking off, or knocking down, one or two side effects, might make a difference. Or not.

If you’re having side effect issues on one of these drugs, but aren’t sure you want to stop altogether, taking a break might be another option to mull over and possibly discuss with your oncologist.

So, is it reasonable to take a break from your aromatase inhibitor medication?

Maybe so.

13 Tips to Help Manage Side Effects from Aromatase Inhibitors

Endocrine Therapy: Managing & Making Decisions about Aromatase Inhibitor Medications #breastcancer #hormonaltherapy #aromastaseinhibitors #exemestane #anastrozole

This list of things to try in order to manage troubling side effects is certainly not all inclusive. Nor are these suggestions meant to be some big solution. They are merely ideas to consider trying. Who knows, one or two might help!

Tips to help manage side effects from AIs:

 1.  Keep a journal of your issues.

Record every day or at least every week how you’re feeling symptom-wise. Documentation is super important. Docs love it. Write down what issues you’re having and be specific. Are your joints aching? Which ones? Exactly what activities are hard for you? Are you feeling depressed? Is your hair thinning? Is intimacy an issue? Are side effects impacting your ability to work?

When you have a doctor appointment, take your journal with you so you have “proof”. Perhaps consider keeping a separate journal where you can write down all your frustrations—unfiltered! Releasing them somewhere sometimes helps even if you’re the only one reading.

Need some journaling tips? Here you go.

 2.  Exercise, even a little can make a difference.

Trust me, I know it’s sometimes hard when your joints hurt and the mere thought of exercising makes you cringe. Try doing it anyway. Start off super slow. It might sound counter-intuitive, but exercise can help you hurt less.

Another commonly reported side effect of these drugs is fatigue. Too tired to exercise? I hear you. But exercise can help you feel less tired too. Really, it can. Sometimes the hardest part is getting started. Again, start slow. The key is to start.

Need some motivation tips? Click here.

 3.   If you need to shed a few pounds, work on doing that. 

I don’t know about you, but I’m pretty sick of condescending, finger-wagging articles telling us to maintain a healthy weight and how it helps prevent recurrence etc. I mean, who doesn’t know this is important? Sometimes it’s not that easy, especially when taking these drugs. And yet, it’s important to try, no matter what the scale says.

Don’t think about losing 25 pounds or whatever you think your number is—that number might be unrealistic anyway. Think in little increments. Five. Two. One. Better yet, don’t think about pounds at all. Just try to eat healthier, drink a lot of water and squeeze in some movement most days.

4.  Along with the above, invest in some good walking shoes.

When my ankles starting acting up on anastrozole, I got myself some pricey tennis shoes, and it made a difference. Now I wear them whenever I need to walk a distance. Does this sometimes make me feel like an old lady? Yep. Whatever…

And flip flops—no need to give them up. Invest in better brands such as Born and Clarks. I have both and I love them.

 5.  If you’re having issues in the bedroom, get help. 

Many women talk about libido issues, vaginal dryness problems and the like. Get help. There are products and things to try. Ask for a referral. Do NOT be embarrassed. Okay, try not to be. Regardless, don’t let that stop you. There is help. And yeah, sometimes you do have to “force” yourself to get started in the bedroom, but usually it’s worth it.

Relationships take work. After a cancer diagnosis, this certainly doesn’t get easier. Figure out what works for you and your partner. Talk to each other. Talk to a professional. And then talk to your partner some more.

 6.  Take Tylenol or ibuprofen when planning to sit for extended periods. 

Before I go to a movie, get on a plane or get in the car for more than a couple hours, I take Tylenol. It helps me be able to stand up later without wincing.

 7.  Don’t think about five years or ten years on the darn pills.

It’s overwhelming to think like that sometimes, am I right? Try thinking in shorter increments such as three months, your next oncology appointment, the holidays or whatever.

 8.  Take a break.

I’ve done this more than once. It helped. And now there’s research saying it might actually be a good idea for some women.

 9.  Find others to commiserate with.

Vent here on this blog! Or find another online space where you can be frank. Face-to-face support groups can be helpful. Or not. Depends on your group, I guess. Having some place safe to vent helps. Plus, it takes some of the load off those closest to us.

10.  Wear head covers.

If you’re like me, your hair might be disappearing. (Except for those annoying hairs on our faces, right? WTF!) Get yourself some caps, hats, scarves or even a wig. I never wore caps before cancer. Now I wear them all the time. Besides hiding my hair, they provide good sun protection for my face. I need it. I’ve had a skin cancer diagnosis too. Ugh…

11.  Check and monitor your Vitamin D level.

Following chemo, mine was super low. Getting adequate amounts of Vitamin D is important. Low levels can contribute to bone/joint pain. We monitor mine now and yes, I take a supplement.

12.  Consider switching drugs.

For whatever reasons, I could not tolerate anastrozole. My body just said, no. I switched to exemestane, and I’ve done better. I still hate it, but I’m doing better.

13.  Do not suffer in silence.

If you remember nothing else from this guide, remember this. Never suffer in silence. Just do not.

You have a right to be heard. You deserve validation, and you also deserve help in managing side effects from a medication that your medical team is prescribing for you. And of course, you have the right to stop taking these meds if you so choose.

Again, the decision is yours and yours alone.

How to Talk to Your Doctor about Side Effects from Aromatase Inhibitors—8 Tips

Endocrine Therapy: Managing & Making Decisions about Aromatase Inhibitors #breastcancer #endocrinetherapy #aromataseinhibitors #womenshealth #patient #doctor

Many women confide that their medical team isn’t all that concerned or helpful when it comes to these side effects from hormone therapy. Women often share that their symptoms are dismissed as not that bad, pretty normal, or par for the course due to normal aging.

I’ve heard all that too. And it’s annoying as hell!

It’s important to remember that most doctors are not dismissive or certainly don’t intend to be, so generalizations are not a good idea here either. But clearly, many women do not feel heard. Their concerns and side effect issues are not being addressed or even validated.

And that’s a problem.

If you are suffering from nasty side effects from your AI drug, you deserve validation. You deserve help managing them. You deserve support.

Never suffer in silence. I keep repeating this because it’s so important.

It can be hard to talk about side effects. Some of them are very personal. Some of them are embarrassing.

But what else is new, right?

You and I have been dealing with embarrassing and awkward appointments, conversations and questions since day one of our breast cancer diagnoses.

So how can we make these discussions easier, or at least a little easier?

1.  As I’ve mentioned before, keep a journal of your side effects and be specific.

When you go to your appointments, take your journal with you. It helps to have some documentation to back up what you’re experiencing.

2.  No journal? No problem. Just write down your observations, concerns and questions whenever you think of them. Don’t wait until you’re ready to go out the door to your appointment to do it.

If you wait, you’ll likely forget important stuff. Keep a notebook handy and start writing down concerns and questions as they pop into your mind.

3.  Take someone with you to appointments, if it will help.

Obviously, if more eyes and ears make you more nervous, embarrassed or whatever, go it alone.

4.  Don’t be intimidated. Okay, try not to be.

This is your appointment, your life. Speak up. Voice your concerns. Ask your questions. Step out of your comfort zone. Stick up for what you believe and/or want.

5.  Ask for referrals.

If you are struggling with something and would like to talk with a different specialist or just someone else, ask your doctor who she/he would suggest. If that makes you uncomfortable, ask via a phone call.

6.  Don’t be put off, rushed or allow your concerns to be brushed aside.

You deserve to be heard and you deserve help managing side effects from a medication that has been prescribed for you. Don’t settle for anything less.

7.  No concern is too small, or too big, to bring up.

If something’s bothering you, bring it up. If you don’t, you’ll likely regret that you didn’t when you get home.

8.  Do your best with self-advocating.
Self-advocating is a skill. As with any skill, it takes practice. You’ll get better at it. It might never be easy for you (it’s not for me), but you will get better at it.

Final Takeaways

I hope reading this post has been helpful. 

Believe me, I understand the challenges taking these drugs can present. I understand the dilemma of trying to weigh the pros and cons of taking them or not. I understand the anguish that can arise when you just want to stop, but you’re getting a raised eyebrow from your oncologist who doesn’t seem to get it. I understand if you’ve decided, enough, and have chosen to stop taking them. I understand the fear of stopping as well.

We are all different in how our bodies respond to these drugs, so don’t worry about people who judge your decision about taking them or not. After all, it’s your body. It’s your life. It’s your decision.

Bottom line:  No matter what you do or decide not to do regarding these medications, you deserve validation and support from your medical team.

Finally, if you remember one thing from this post, I hope it’s this:

No matter how hard or awkward it may be to talk about your issues, whatever they might be, never suffer in silence. Do not do that. Just do not.

And you’re not alone. Remember that too.

Thank you for reading!

If you like this post, please share it. Thank you!

To get this post emailed in pdf format to read later at your convenience, click here.

If applicable, what is your biggest issue regarding your aromatase inhibitor medication?

Are you getting the validation and help you need to manage your side effects?

Do you find it difficult to talk with your doctor about your issues?

Are you currently taking, or have you ever been on, one of theses medications?

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Holly

Wednesday 12th of May 2021

Hi Nancy, Your blog keeps it real in the world of BC, and this article in particular strikes home at this moment. I've been on an AI for over a year now. Started on Anastrozole and quickly became suicidal. My oncologist nurse practitioner (the doctor meets you at your first appointment, then everything is through a nurse practitioner) encouraged me to stay with it despite these v. worrying side effects. I went off the meds and found another oncologist who titrated up the dosage of Exemestane, and it's been much better. However, I have osteoporosis and will be meeting with a specialist to discuss a monitoring plan and identify the point at which the AI does more harm than good (BTW I learned that specific language from a free service offered by NCI.gov that helps you find trials, discuss your situation, etc. I found them v. knowledgeable). As others have indicated, the best medicine for joint pain is movement. A few months ago, I had a hard time getting up off the floor which I found unacceptable, so I increased movement and it helps.

In addition to NCI.gov, there are many resources available to help prepare for tough discussions about ET (endocrine therapy) with your doctor. In the "For Physician" section of MD Anderson.org is a valuable trove of online calculators, algorithms, decision trees, etc. that oncologists use in developing treatment plans (i.e. search for Clinical Practice Algorithm's). In addition I just came across the Breast Cancer Index test that claims it can predict whether it's helpful to extend ET/AI treatment beyond 5 years (I'm not endorsing the test, just sharing information). Another is CTS5, an online calculator that predicts the chance of recurrence beyond 5 years and that helps us understand the risk/reward of an AI beyond 5 years. There's a great article about this on Breastcancer.org.

IMHO We need an oncotype test for AI's. The Early Trialist's Group published research: "However, up to 50% of ER+ breast cancers do not respond to ET." (Breast Cancer Trialists’ Collaborative Group, et al. Relevance of breast cancer hormone receptors and other factors to the efficacy of adjuvant tamoxifen: patient-level meta-analysis of randomised trials. Lancet 378, 771–784 (2011).)

The FDA has recently approved the FES agent that identifies reaction to ET, but it's only for BCM. (Association of PET-based estradiol-challenge test for breast cancer progesterone receptors with response to endocrine therapy). So if you are mets, it's my understanding there is a test to assess the efficacy of ET.

So far, I'm unable to locate any test that indicates the efficacy of an AI for BC. From my vantage point, it seems that everyone with hormone positive BC gets an AI, just as chemo was once administered to everyone. We deserve better than taking a life altering medicine that can be ineffective in up to 50% of ER+ BC's!

Thanks for sticking with me here! The good news is science is moving quickly and something new is probably right around the corner!

Holly

Thursday 20th of May 2021

@Nancy, Yes, this test sounds valuable and I’m glad it’s there. Now l want one that predicts whether l should be given an AI at all! Just like the Oncotype test for chemo. Dr.’s are using ET as a blanket treatment when we’ve known for 10 years it’s ineffective in up to 50% of cases. It seems like something we should know. This makes me angry that women’s overall health is not more important.

Nancy

Thursday 20th of May 2021

Holly, Keeping it real is always a primary goal. There is the Breast Cancer Index Test (BCI) that tests for efficacy benefit regarding staying on AIs beyond five years.

Helen

Thursday 5th of November 2020

I was diagnosed in June 2012. Massive tumour, 4 nodes involved, ER/PR +. Sadly I only had a single mastectomy, although I did question why not take both. Mastectomy, chemo, radiation, ovaries out (previous to BC had sub total hysterectomy leaving ovaries, isn’t hindsight a wonderful thing?) I was put on Letrozole first which I suffered through for four years. Begged for something else, have now been on Aromasin just over three and a half years. Coming up to eight years on AI March 2021. I am 53, feel like my 83yo mother most days. Worst part for me has been the loss of vitality that I once had. I got so fat, but discovered that low carb living worked for me and lost nearly 50kg and have kept it off. What saddens me the most is that my husband and I have had a sexless marriage since my diagnosis. We haven’t even slept in the same room for years. I have vaginal atrophy and have now accepted that I will probably never have sex again. I can’t even have a Pap smear without pain and bleeding. This is the ugly reality of this hideous disease. I suffer depression and guilt over my broken intimacy with my husband. I can’t even bear to cuddle him sometimes. Like I don’t want to disappoint him. And did I mention how often I need to pee? I struggle every day that I continue to take my misery pills. But I’ve just lost my nephew to cancer, and will likely lose my sister as well. That hangs heavily over my head.

Nancy

Friday 6th of November 2020

Helen, I'm sorry to hear you've suffered so many nasty side effects from your endocrine therapy meds. It seems to me, there should be some help for you. Don't give up. Have you talked to your gynecologist about some possible solutions - things to try? You shouldn't have to give up on intimacy. I'm sorry to hear about your nephew and your sister. That is a lot of loss for you and your family. Thank you for sharing about these personal things.

Debby

Wednesday 23rd of September 2020

Was on Letrozole, developed pain in upper arms and hands,and knees hurts when I lift my arms and its hard to make a fist. This is 6 months in.Dr. recommended stoping for 2 wks- would changing the company that makes the generic letrozole help if its the additives as one person mentioned? Aside from my body being like a 80 yr old (im 70) Im doing fine and Im worried that switching to another AI would be worse. Confused!

Nancy

Friday 25th of September 2020

Debby, I have taken breaks. So that might make sense. I did switch meds and it did help. Went from Anastozole to Exemestane. Just be sure to keep discussing all your issues with your docs. Here's a post you might want to read if you have not: https://nancyspoint.com/13-tips-help-manage-side-effects-aromatase-inhibitors/ Thank you for sharing. Hope your aches and pains improve.

Beth

Wednesday 26th of August 2020

I was diagnosed stage 1a er+ in May 2016. Lumpectomy, no node involvement. Low dx score so no chemo just radiation. I was on arimedex for maybe a year or so and switched to aromosin when my feet, ankles and legs were to stiff to get out of the car. Aromosin has been better, now mostly just my hips hurt. But I have dry vagina no libido utis yeast infections thinning hair weight gain hot flashes insomnia moodiness dry itchy skin brain fog and inability to focus. I have just reached my 4th yr on this stuff. I am relatively young at 52, and I think I am going to go off it now rather than go one more year. I'd like to have sex with my husband and not have pain. Of course I'm scared cancer will come back but I think 4 yrs is all I can take. Thank you Nancy for giving me a place to read the real stuff and not just propaganda,. I hope you are doing well recuperating from your recent surgery.

Nancy

Friday 28th of August 2020

Beth, I'm sorry you're been dealing with such nasty side effects. You're certainly not alone. Have you ever taken a break? I have done that a couple times. It helped me emotionally if nothing else just to have that mental break. Good luck making your decision to stay on or go off. Lots of us have been there. Thank you for reading and for sharing too. And thank you for the good wishes too. I'm doing pretty well, so far anyway.

Temple

Thursday 13th of February 2020

Greetings from Down Under I am so grateful for your blog and this discussion of AIs. I was terrified to the point of crazy at the thought of commencing Arimidex having read about the life changing side effects. I also learned how dismissive the medical profession are , and are now promoting AIs as preventative course for women with so little acknowledgement of the side effects. I also have enjoyed this honest discussion, as I was reprimanded on an leading Australia BC site for simply suggesting, in a reasoned and calm way, a lot of doctors were not listening to female voices and more needs to be done about side effects. That was seen as too negative! I was very distressed being reprimanded by a site meant to support us. I felt alone on AI side effects!

Thank you for actually allowing people to vent and be honest. And as it turns out I am now 11 weeks into Arimidex and it seems to have no side effects so far ( can you believe that!?) but still terrified they will start up. I am so angry about this drug and what it may do to me. I wonder if I will cope with it or side effects will hit me suddenly or eventually. I am 59 and HER2 - HR/PR + EBC 2b

Cat

Friday 27th of March 2020

OMG... It was my sweet cardiologist who commented that, with half of women terminating AIs before prescribed due to side effects, that there's a huge need for the pharmaceutical industry to step up with improved options! Bless him.

But my (famous, hard won) oncologist refused to consider that my disabling fatigue was AI related -- referred me to cardiology. When I finally requested a break from AI, I felt dramatically better in 2 weeks. Now I've tried all three and am disabled (literally, unable to do anything off the couch). Not sure what comes next. :-0

Nancy

Tuesday 18th of February 2020

Temple, I'm glad you found me too! Welcome. Sorry to hear that you were reprimanded on a different site. That won't happen here! You might do just fine on Arimidex. I'd advise keeping a journal or just marking down on a calendar if and when any symptoms or side effects pop up. Thank you for reading and taking time to share. My best to you. Keep us posted. Btw, a bit of anger is normal and perfectly understandable. Good luck!