Look, Ma! No Libido!

This is a delicate issue that isn’t talked about enough. It’s time we brought it out into the open.

Based on the reactions that I’ve received from some health professionals, I believe that loss of libido is a highly underreported side effect of aromatase inhibitors, medications that are prescribed to suppress estrogen production in women who have or have had hormone receptor-positive breast cancer; aromatase inhibitors are generally given only to postmenopausal women. Sure, low libido is listed as a possible side effect on the informational insert that you get with the pill bottle, but its mention feels like an afterthought. The reality is, AROMATASE INHIBITORS STOMP OUT YOUR FREAKIN’ LIBIDO.

Why don’t we talk about this more? This may be due to the average age at diagnosis of breast cancer being the mid-60s, give or take. I’m willing to wager that many women of this age don’t feel very comfortable discussing intimate details of their personal life with (especially male) oncologists.

Couple that with the fact that as much as we’re trying to change as a society, postmenopausal women are still not valued very highly. Youth equates to beauty, and women continue to be judged by their appearance. Even the inhabitant of the White House has reflected the notion that an “older” woman wouldn’t be a fit companion for a high-powered man, presumably because he deserves “better”.

So let me stress, everyone deserves the opportunity to engage in meaningful intimate relationships. As we get older, sexual intimacy may not have the same prominence in our interactions, but it is still an important part of bonding.

This is a perfect example of a “quality-of-life” issue. It can’t be measured by a laboratory test, but it’s something very valuable. When the medical profession obsesses about breast cancer survival rates, and when the pharmaceutical industry develops even more-effective medications, those lives saved can be counted as numbers. But sadly, a drop in desire for intimacy, or a similar quality-of-life marker, can’t be measured in the same way and, therefore, doesn’t bear the same weight in decision-making.

Loss of libido can lead to a decrease in perceived quality-of-life

It rankles me when some of these complicated low-hormone effects experienced by women taking aromatase inhibitors are written off as simply symptoms of natural menopause, as if the cancer survivor is making a big ado about nothing. As someone who was premenopausal when originally diagnosed with breast cancer, and then chemically forced through menopause via chemotherapy and tamoxifen, I can assure you, none of this is what my body would “normally” be doing. The change from what I was to what I am is really striking.

I often think, if a medication could reduce the risk of cancer, but you would have to sacrifice your left arm for it to work, it probably wouldn’t sell well. But if the cost weighs heavily on quality-of-life, taking a toll on intimate relationships, that’s perfectly acceptable? Women who stop aromatase inhibitors are called “non-compliant”, as if they’re foolish and don’t know what’s good for them. But maybe doctors need to consider more than just statistics when it comes to treatment recommendations.

So why aren’t we forcing this conversation with more medical professionals? It’s easy to write prescriptions for medications. It’s much more uncomfortable to navigate the complexities of how intimacy suffers from them. The level of detriment will differ from person to person, as will the value of an intimate experience. While oncologists work to improve the length of our lives, as cancer survivors we need to apply pressure in the other direction, to make sure that their decisions are also informed by the quality of our lives.

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It’s important to note that while libido takes a huge hit from hormone-suppressing medications, it’s not even the main reason women stop aromatase inhibitors. There are other side effects that make the medicines difficult to continue. If you are having troublesome side effects, then tell your doctor as soon as possible. If your doctor doesn’t listen and doesn’t offer ways of alleviating your complaints, it’s time to find another doctor.

Hanging Tough With Letrozole — Or Not

There seems to be so much back-and-forth in the life of a breast cancer survivor. I really thought things would settle down eventually, but it seems like they refuse to.

The ultimate goal, of course, is to squash the risk of cancer returning, but the way medicine goes about it is not always kind to the patient.

Let’s back up. First, there’s the shock and anxiety of being told you have breast cancer. Because the average age at diagnosis for women is 62, most of these women grew up at a time when cancer was strongly linked to death. While treatment, and therefore survivability, has greatly improved in recent decades, a cancer diagnosis is still frightening.

That life-saving treatment comes with a reputation for nastiness. Surgery seems like the easy part; it’s the chemotherapy and radiation that we’ve heard horrible things about. I myself had six infusions, each three weeks apart. I assure you, I memorized the calendar, knew the dates of the infusions and the order of my drugs. Even about what time each one would begin on the infusion day. I counted the minutes to the end. Then came radiation, but that seemed like a cake walk in comparison.

Once through ALL of that, you figure that the treatment portion of your cancer is over and you have the rest of your life to ride into the sunset, basking in the warm glow along the way.

But for those of us with hormone receptor positive (HR+) cancer, there’s this little thing called endocrine therapy that seems like an afterthought when you’re going through the “tough stuff”.

Yeah, you think you’re done, but then you realize, there’s more…

Yet it does feel like a slap in the face when you’re “done”, because you’re not really done. And that’s where we find out that while chemo and radiation were the “running the gauntlet” phase of cancer — abusive, but time-limited — for many, the hormone therapy afterwards is like doing the Ironman triathlon. Except the water, bike and road are on fire. Because it’s hell.

Okay, about here is where I have to stress, my experiences with tamoxifen and the aromatase inhibitor letrozole (Femara) have not been as brutal as for other women. At the same time, they’ve not come without complications. Currently, I’m dealing with painfully stiff joints, weird bone pain, loss of libido (hubby’s fave), hair thinning (grrrr, I thought I was done with this when I finished chemo!), memory issues (wait, what?) and other side effects that I’m pretending I can ignore.

On the bright side, it is gratifying to know that what I’m experiencing is not all in my head, nor is it as bad as it could be. In fact, I found a valuable post (one of many!) on the blog Nancy’s Point, entitled “The Dark Side of Aromatase Inhibitors“. Not only is the post a great read, but what makes it so eye-opening is the comments section. Nancy invites readers to share their experiences, and wow, do they!

If you choose to venture there, keep in mind that everyone reacts differently to these medications. People with negative reactions may be quicker to share than those with less extreme reactions.

So if you’ve been told that you need adjuvant endocrine therapy following the “main” cancer treatments, do your homework. PLEASE know that not everyone has miserable side effects from them, and I strongly urge you to give the medications a try to see how well you tolerate them. You may surprise yourself. Note what side effects you’re experiencing and the date of onset so that you verify that the reaction is related to the drug.

Then, if you truly cannot handle the discomfort (no shame there!), you will be able to show why. Discuss other options with your medical team. Whatever amount you were able to tolerate will offer you that much more protection, and that will still benefit you.

For everyone else, hang in there!

Maybe It’s Okay To “Overreact”?

After cancer, overreaction may be called for.

So it’s Saturday and I’m sitting in my general practitioner’s waiting room, having been able to secure an emergency appointment. That morning I started seeing light flashes (photopsia) in the outer periphery of my left eye. Very weird, sudden and striking, like little comets whizzing up and down along the curvature. I know I shouldn’t immediately rush to the uncurated internet for information, but who can resist when you need answers fast? After a quick search I saw some of the possible causes, including retinal detachment and Vitreomacular Traction Syndrome (VMT). My symptoms were pretty spot on as I realized I had some significant floaters in my eye too, more than usual.

Further reading pointed to aromatase inhibitors (the estrogen-squashing medication given to breast cancer patients with hormone positive tumors, after they’re done with surgery/chemo/radiation) as a potential contributing factor. As explained on the American Society of Retina Specialists’ website: VMT syndrome is most common in older adults and women due to age-related vitreous changes and vitreous liquefaction associated with declining post-menopausal estrogen levels, respectively. 

Great. I am taking the aromatase inhibitor, letrozole. And so far, it’s been highly effective in dropping my estrogen/estradiol to basement levels. Like, 80-year-old granny levels. Except that I’m 54 years old.

I do NOT want to wait on getting my eyes checked out! I learned from cancer that procrastination turns an easy fix into prolonged treatment.

So now I’m waiting to see whether what I experienced really does have to do with my unnaturally-low-for-my-age estrogen, or if it’s nothing to worry about. My GP’s office couldn’t do a retinal scan, but as soon as I get approval from my insurance, I’m jumping on the first ophthalmologist appointment I can get.

Before cancer, I would have brushed the symptoms off as just some passing oddity. I doubt I would have taken action unless the symptoms had persisted, and even then, it might have taken weeks. I wasn’t primed to react.

But now, while I am *not* panicking, I’m also not waiting. Like it or not, cancer taught me that when it comes to worst-case scenarios, the worst is a distinct possibility.

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If this does end up being VMT syndrome or similar, and if it can be reliably linked to medically-induced estrogen suppression, I’ll be deciding between risking loss of eyesight vs. risking the return of cancer.

But maybe it’s nothing.

After All Those Bad Things I Said About Letrozole…

I feel that I need to revisit the whole letrozole thingie, just to be fair.

In my last post I expressed my frustration with the continued side effects of the estrogen-supressing aromatase inhibitors designed to reduce the risk of cancer recurrence. Cancer survivors face a considerable amount of pressure from our oncologists to stay on these medications, but everyone agrees that their use does not come without health risks or hits to one’s quality of life. The latter is a squishy concept that is not easily quantifiable.

Deciding whether to take medications for the length of time prescribed, or stop them early, comes down to an individual’s tolerance of both the side effects and risk.

So after all the complaining in my last post, the big question I have in front of me is that, given that I’m already postmenopausal — regardless of the fact that it was the medication that pushed me into menopause — if I were to stop letrozole, would I experience a significant improvement of my complaints? And if I could reverse the side effects how long would it take? None of that is clear.

Granted, there remains additional risk in taking an aromatase inhibitor, particularly long-term, as the cessation of estrogen production contributes to aging and age-related maladies, including heart issues, bone loss and broken bones. And certainly, there is gradual collagen and hair loss, not to mention suppression of the libido.

There are some bright spots in this.

But if we ignore that for now, I have to admit that not all days are as bad as how I described them. I don’t lie in bed staring at the ceiling while every single side effect hits me all at once. I experience them here and there. And most of them are tolerable.

My fear is about the future. If I’m feeling this now, what will it be like in another six months or a year? What if things go downhill gradually and I don’t realize it until later when I’ve slid so far down that nothing is salvageable. That’s completely ignoring the realities of the “now” for the imagined troubles of tomorrow. That is not being mindful!

But unfortunately, with medications such as these, the future is a factor that must be taken into account, and with that comes anxiety. Of course, anxiety always makes things worse. For me, it’s one of the most difficult side effects of cancer, because it magnifies all the negatives, both real and imagined.

I realized after I submitted the last post, after I complained about all the things I was experiencing, that not everything was as horrible as I thought. Things are not “normal”, and the situation is still applying a frustrating pressure on my quality of life. But maybe, for now, can I hold on and get the most out of the benefits of letrozole, and then re-evaluate tomorrow?

Yes, I can.

(Almost) Six Months on Letrozole

WARNING: IF YOU ARE STARTING ON AN AROMATASE INHIBITOR, I highly recommend that you not read this and instead give yourself the chance to gauge the medication’s effects without being influenced by someone else’s experiences. Note that I started letrozole just out of menopause, so my side effects from this drug have been more dramatic than they might be for a women who’s been postmenopausal for longer.

First a bit about aromatase inhibitors: according to breastcancer.org, “Aromatase inhibitors work by blocking the enzyme aromatase, which turns the hormone androgen into small amounts of estrogen in the body. This means that less estrogen is available to stimulate the growth of hormone-receptor-positive breast cancer cells.” Think of this as starving a hormone-positive cancer of its food.

Aromatase inhibitors have been shown to be more effective than tamoxifen, with fewer serious side effects, although they are certainly not risk-free as they can cause “more heart problems, more bone loss (osteoporosis), and more broken bones than tamoxifen.” (breastcancer.org)

When it was time to start letrozole, I took a different tack than when I began tamoxifen. For the latter drug, I did all the research I could, researching relevant studies, digging into possible side effects and visiting lots of forums to learn about what other women were experiencing.

I wish I hadn’t. I think all the negatives affected my perception and made me anxious about taking the medication.

The letrozole pill looks so teeny and cute – how bad could the side effects be?

So after two years of tamoxifen, when my hormone levels suggested that I was postmenopausal and it was time to switch to an aromatase inhibitor, I stayed away from clinical literature about letrozole. I decided to give it a chance, since my oncologist felt that I had confused the effects of anxiety about taking tamoxifen with the actual effects of tamoxifen.

Okay, then. As I was leaving my oncologist’s office, letrozole prescription in hand, he added that some women complain of “joint pain”. I think he felt it was his duty to warn me.

My experience? I’m finding it harder to recover from workouts. I train with free weights and am a rower (currently, indoor) and the change in my resilience and stamina is striking. In 2018, a year after finishing up chemo, I was able to power through tough workouts and felt like I’d gotten most of my pre-cancer strength back.

Fast-forward to now, just two years later, I feel old. My joints are creakier and I’m having increased muscle pain and overall stiffness. I’m experiencing bone pain in the leg that I broke skateboarding when I was 12. Yeah, I push through workouts, but they’re taking their toll on me.

I’m fortunate to have a full complement of gym equipment at home, so the COVID-19 lockdown didn’t hinder my workouts. To get some fresh air, I incorporated more hiking into my routine, in addition to my regular workouts.

It was too much and left me with hip pain that made it difficult to fall asleep. So I took a rare break from vigorous workouts and for two weeks incorporated more gentle movements and focused on yoga, which I had been doing intermittently.

When I started ramping back up, I didn’t feel rested, I felt weak! Weights that had been easy to lift a couple of weeks before felt challenging. I had to restart the process of building my strength. You could pass it off as simply “age”, but I’m only 54, and the drop in strength and energy has felt precipitous, even demoralizing. While it’s true that I went through menopause during the last two years, it was a medication-induced menopause and I was literally shoved through the change.

Letrozole has been shown to be very effective in preventing cancer recurrence, presumably because it works to keep estrogen levels low. However, most women on letrozole are in their 60s and have been postmenopausal for a number of years. For a woman in her 50s, the aging effect of estrogen suppression has felt dramatic.

My libido dipped even lower than I’d experienced with tamoxifen, something I was warned about by my GP and gynocologist (both females). My male oncologist didn’t talk about it. I believe this is a seriously underreported side effect of aromatase inhibitors and one that many women suffer from in silence, because they don’t feel comfortable bringing it up.

Likewise, I feel my appearance changed. Now, this may simply be my perception of myself, as my post-chemo hair transitioned from super-cool and spikey to thin and limp (and, now, untrimmed!), and my eyebrows never recovered. But it’s not just in my head: A bus driver recently tried to offer me a senior citizen discount, whereas four years ago someone had told me they thought I was in my late 30s! That’s a big difference. The fact that the lack of estrogen is making me look like I’m older than I really am has become distressing:

And that difference is felt in my relationship with my family. There have been times that I’ve looked at my husband (four years my junior) and my high school-aged kids, and I feel like don’t belong with them. I feel like a stranger, an old lady that’s just hanging around. That hurts a lot.

And on my worst days, I feel dark clouds rolling in, bringing with them frustration and hopelessness. Is it letrozole or menopause? Does it even matter? Take a woman, throw her in a bag, tie it to a tree branch and then beat it with a stick. That is how I feel when I have to take a pill that does these things to me. No control, no future, lots of pain. The longer that I continue with medications like this, the more I feel that they are pointless, since I’m starting to not care whether or not the cancer comes back. And that’s the worst side effect of all.

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So, this blog is about being honest about the cancer experience. But it’s also about mindfulness. I have to open the door and let the negative feelings into the room so that I can offer them compassion and a kind ear. I sit with them for a while, and eventually, I feel better.

Hi-Ho, Hi-Ho, On Letrozole We Go

Starting up again…

After giving me a six-week respite from tamoxifen and then running bloodwork that revealed I was postmenopausal, my oncologist made good on his threat to put me on letrozole, an aromatase inhibitor. This breast cancer medication is supposed to block “the enzyme aromatase, which turns the hormone androgen into small amounts of estrogen in the body. This means that less estrogen is available to stimulate the growth of hormone-receptor-positive breast cancer cells” (breastcancer.org). It’s also better suited for postmenopausal women.

Perhaps it’s more correct to say that the journey is BACK on. I enjoyed my time off tamoxifen, but I really didn’t notice much of a difference in myself whether I was taking it or not, suggesting that maybe what I thought were side effects, weren’t. So I’m willing to humor my oncologist and try an aromatase inhibitor.

Not gonna lie, I really did not want to go on yet another medication, but for this appointment, I left all the journal articles at home and put away the boxing gloves. I promised my oncologist that I would stay off the forums, stay off PubMed, quit overthinking things and give letrozole a chance.

The reason? My oncologist thinks that my earlier frustration with tamoxifen was, to put it bluntly, in my head. And my clinical counselor suggested that what I complained of could be explained by anxiety. But I swore that my memory and focus issues started with tamoxifen.

You know what? I’m not so sure now.

The fact is, everything that I was experiencing could have been caused by anxiety (or menopause). And even more striking were the things that I didn’t experience. Not only did I not have significant hot flashes (maybe a “warm flush” here or there, easily countered by taking off a sweater), I never had night sweats. Heck, I had more night sweats before my cancer.

No weight gain, either, which had been another big concern of mine. I’ve been disciplined in maintaining healthy fitness habits throughout my adult life, probably to the point that most people wouldn’t tolerate. Tamoxifen didn’t manage to mess with that, which was extremely gratifying.

While I really want to peg the concentration problems, distractability, flagging libido and other negatives on estrogen-blockers, a retrospective look at my emotional history suggests that (1) I’m highly suggestible (I need to stay off the internet!), (2) there have been loads of anxiety-amplifying events in my life, even before cancer, that I haven’t handled well, and (3) I would be better off shutting up, taking the pill and working on getting my mental state in order.

I mean, I already knew most of this. But some things need to hit me between the eyes a number of times before they actually register.

Wow, dizziness and impaired ability to drive are bad enough to merit a prominent place on the label? Yay! I’m going to pretend that this is a sleep inducer that will leave me better rested. I’ll let you know if that works.

So, while my oncologist warned me about “a little joint pain” (eek!), I’ve avoided anything but a cursory glance at what I might experience on letrozole, besides what reactions would necessitate calling the doctors.

We’ll see how bad these side effects really are.

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A FINAL NOTE – According to what was written on the bottle, this stuff can cause dizziness and impair my ability to operate a vehicle. Seriously? I didn’t expect that, but here’s what I’m going to do with that tidbit of information: I’m going to view letrozole as a reason to get to bed earlier, since I’ll obviously have to take it in the evening. And I’m going to tell myself that this is going to help me sleep. Who knows, maybe it will?

What No One Told Me About Cancer and Hair Regrowth

More than two years after finishing chemo, after being afraid my hair would not grow back, and after being delighted with the way it did…I’m experiencing follicular drama, once again.

Once chemo was over, my sleepy follicles took their time getting roused into action. To say that I worried would be an understatement. I was still caught up in the unfairness of being smacked down by breast cancer. Confronting the possibility that after enduring the nastiness of cancer treatment, I might not get my hair back? That was too much.

Well, if you’ve read my posts on hair, you’ll know that my hair finally did come back. And there was much rejoicing.

And that’s where my hair posts stopped. But as happens with these kinds of things, that wasn’t the end of the story.

While still bald, I had been fed reassuring anecdotes by well-meaning supporters about hair coming back even better than before, lush locks that served as well-deserved rewards for undergoing the anxiety and strain of cancer diagnosis and treatment.

But as much as cancer patients feel like they don’t know what’s going on, those around them have even less of an idea. They want you to “stay positive” at all costs, so they overload you with lots of good news.

The forest isn’t as dense as it used to be.

By now you can probably guess where I’m going with this. Because in Spring 2019, things started changing. Within a few months, my uber-cool spikey rockstar hair lost fullness as my strands thinned. Then, I saw “bald spots”.

So, let me explain how I define “bald spots”: these areas have hair, but due to the color (um, WHITE) and thinness, the hair seems translucent, even transparent. And along the part? You can’t see the roots well at all.

My reward for enduring cancer is invisible hair.

My hairstylist confirmed that the hair that comes back in after chemo is different from the hair that eventually settles in. And mine had settled.

Tamoxifen also played a role, since choking off estradiol and moving into menopause will age both you and your hair, particularly if you are premenopausal going into treatment, as I was. So this should have been expected, but in the hustle and bustle of all the other little things, like, oh, wondering if you’re going to survive the ordeal, no one really talks about the fact that there will be other changes that take place.

And now, I’ve been off tamoxifen for almost six weeks, but can’t tell whether there’s been any regrowth, not that I expect any. I meet with my oncologist this Tuesday and you can bet your panties he’s going to prescribe an aromatase inhibitor for me, so the pharmaceutical depression of estrogen will continue.

I am dealing. Mostly. Am I happy about this? Of course not. The last few years have felt like running a gauntlet of misery, but one where I’m only hobbled and not completely taken out. Given that, I’m ashamed of complaining, as there are many others doing so much worse. But not ashamed enough to stop writing about it, as this is my reality and it affects me. If I’m going through this, there’s a good chance that many others are too.

I’m supposed to be moving on and leaving cancer behind me, right? But like an annoyingly nosy neighbor, it keeps waving at me through my kitchen window, reminding me that it’s living next door.

(Almost) Two Years on Tamoxifen: A Change in Plans

This weekend would have marked two years of taking tamoxifen, the estradiol-blocking medication that is supposed to keep my hormone-positive breast cancer from recurring.

As it turns out, there will be no such commemoration. Several weeks ago, I started noticing a funny cramping feeling in the general area of my uterus. It was light and under any other circumstances, I would have ignored it, but use of tamoxifen is associated with an increased risk of endometrial/uterine cancer, so it kept me on edge.

It’s worth noting that the increased risk is actually for postmenopausal women, and to the best of my knowledge, I was not yet postmenopausal. That’s why pre- and perimenopausal women are started on tamoxifen but taken off of it as soon as they go through menopause. Still the sensation, although intermittent, didn’t go away.

I finally called my oncologist. As it was, I was wary of tamoxifen – I already blamed it for a number of other negative things that I experienced: fatigue, hair thinning, low libido, cognitive issues, mood swings, general misery…all of those and more were listed as possible side effects.

I complained about the light cramping to an oncological nurse, who was surprised that I didn’t have a recent pap smear on record, because according to her, the oncologist wanted me to have one yearly. Mind you, pap smears are for cervical cancer, and I wasn’t at an increased risk for that. But whatever. The nurse gave me her blessing to stay off tamoxifen until I next saw the oncologist.

Conveniently, my oncologist appointment was in three days.

I was stressed, because if there’s one thing that being a cancer survivor made me good at, it was stressing. So much so, that my blood pressure hit 165/95 at my appointment. I couldn’t get over how ridiculous that was and how my thoughts had generated that sort of a reaction. I don’t think my pressure was even that high before my cancer surgery, at a time when my anxiety was raging and everything felt out of control.

I had a prolonged discussion (negotiation?) with my oncologist. In the end, we decided the following: I could take a month off tamoxifen and meet with him again in six weeks. In the meantime, I would go to my gynecologist to rule out endometrial cancer. (Incidentally, a week later at the gynecologist’s office my blood pressure was back down to a very reasonable 102/64.)

No more tamoxifen? Yeah, I feel like celebrating.

My oncologist and my clinical counselor (who I discovered had spoken to him about me) thought that some of the worst side effects that I was experiencing were not due to tamoxifen, but anxiety. My onc suggested that if nothing improved after a month off tamoxifen, I should consider anti-anxiety meds.

But he also checked my hormone levels to see where I was in my journey into menopause. A few days later, I got the news: I was officially postmenopausal and was told to not restart tamoxifen.

So, okay, no more tamoxifen. I was also quite happy that I managed to transition through menopause without any significant hot flashes. The downside of this was, however, that I would be put on an aromatase inhibitor, which came with its own set of side effects, not the least of which was significant bone pain and bone density loss.

Or at least those were some of the effects that I remembered from the last time that I read about them, which was a while ago. This time, I’ve decided, I won’t go back and research all the negatives of the medication. Anxiety does hit me hard, I have to admit, and I want to be sure that I’m really experiencing what I’m experiencing and not simply being influenced by what I’ve read.

So I’ll give the new medication a fair shake and give myself a break by not getting worked up by what *might* happen. As the gynecologist said, looking over my bloodwork, “Actually, you’re really healthy, except for having had breast cancer.” I’m going to go with that and see where it takes me.