Running late with this post as I’m furiously cleaning our apartment in advance of the Christmas holiday!
I noticed a few mornings ago that when I made a fist and then straightened the fingers of my right hand, the joints didn’t stick at all.
While this may seem like an odd thing to celebrate, it marked a milestone for me. This was the last side effect attributable to letrozole that I had been experiencing, and it was finally gone. Letrozole is an aromatase inhibitor that blocks production of estrogen and is used as endocrine therapy for breast cancer patients who have estrogen receptor-positive tumors. I’d been on it for about 14 months after switching to it from tamoxifen.
For reference, as of today, I am at Day 307 since stopping the medication, so it’s taken quite a while for this joint side effect to subside. Yes, there are other things still plaguing me, such as memory issues, low libido and difficulty maintaining muscle (even with strength training), but those are more difficult to separate out from the garden-variety effects of menopause.
The sticking fingers began in August 2020 (about 8 months after starting letrozole) and were getting progressively worse. By March 2021, when I called it quits with the endocrine therapy, a number of finger joints were sticking and painful, particularly in the morning.
At that point, I was having trouble getting up off the floor, as I was having issues with joints throughout my entire body. The medication was affecting various aspects of my life, making it difficult to exercise and, as I like to put it, lowering the quality of my existence. Following discussions with my oncologist, we both agreed that my risk of breast cancer recurrence was low enough to stop the meds.
Shaking this last side effect of letrozole reminded me how far on this cancer journey I’ve traveled. There have been so many ups and downs, friends made and friends lost to the disease, that it was easy to forget that nothing in life is permanent. Time passes and situations change, sometimes for better, sometimes for worse.
The concept of “CANCER” used to terrify me, and after I was diagnosed, I hit a low so deep I thought I’d never be able to crawl out of it.
Gradually, as my experience with the disease played itself out, I came to accept the uncertainty about the future. As the end of 2021 draws near, I inch closer to the 5-year survival mark. The fact that I can straighten my fingers in the morning without any pain or sticking is a perfect example of how while I cannot know what the future will bring, I can deal with the “now”. And this “now” is not so bad.
Best wishes to everyone for a very Joyous Holiday Season and much promise for 2022!
Looks like visiting a cardiologist after stopping aromatase inhibitors for breast cancer was a good idea after all.
The letrozole (aromatase inhibitor) that I’d been taking has been associated with cardiovascular effects, and since I was feeling progressively worse from the medication, I wanted to make sure that everything checked out okay.
It seems like the American Heart Association (AHA) agrees with my concerns. An April 26, 2021 statement by the AHA underscored the complicated picture of cancer treatments, in this case hormonal therapies for breast and prostate cancer. As stated in the article by Okwuosa et al. (2021) published in Circulation: Genomic and Precision Medicine, “As patients with hormone-dependent cancers continue to live longer, CVD [cardiovascular disease] has emerged as a leading cause of mortality and morbidity among survivors of these cancers.”
Ironically, breast and prostate cancers are some of the most common cancers in women and men, in addition to having some of the most effective treatments. The number is of breast and prostate cancer survivors is growing. Part of the success of treatment is expressly due to the development of hormonal therapies for long-term (5-10 year) use. At the same time, the increase in CVD problems is a result of this success, because as cancer survivors age they experience greater amounts of age-related cardiovascular events than do non-cancer surivors.
So, what do you do when the treatment that’s increasing your chances of beating cancer may also be increasing your chances of a cardiovascular event? Isn’t that one of the many problems with cancer? If your treatment works well, then that opens the door to having it work “too enthusiastically”, possibly with long-lasting negative effects.
The AHA statement paper cited here stresses the importance of communicating with your oncological team about CVD risk factors and possibly requesting a referral to a cardiologist, having appropriate tests conducted (ECG/EKG, echocardiogram), and–in my opinion the most important thing the survivors themselves can do–modify lifestyle (diet, exercise, smoking cessation, etc.) to maximize your chances of a cardiovascular event-free survivorship.
While it may be frustrating to think of entering into an “out of the frying pan, into the fire” scenario with a potential leapfrog from cancer to CVD, nothing is written in stone. You can make an effort to protect yourself and avoid being a statistic. Focusing on healthy living will benefit you in many ways and is guaranteed to improve your life, no matter what your risks.
Link to the AHA statement: Okwuosa et al. (2021) Impact of Hormonal Therapies for Treatment of Hormone-Dependent Cancers (Breast and Prostate) on the Cardiovascular System: Effects and Modifications: A Scientific Statement From the American Heart Association. Circ Genom Precis Med, DOI: 10.1161/HCG.0000000000000082
It was just few days short of four years from my diagnostic mammogram, the one after which I was told I had triple-positive breast cancer.
If you or someone you love has been through this experience, you know the drill: surgery, chemotherapy, radiation, maybe monoclonal antibodies, endocrine therapy. Yours may come in a different flavor, but the dish is the same, give or take.
Last Thursday, following three years of endocrine therapy (two of tamoxifen and one of letrozole [aromatase inhibitor]), I called it quits, with my oncologist’s permission. The side effects of the letrozole became too much for my joints, my brain, my intimate relationship, and possibly even my heart. My doc said he knew it when he saw me and agreed that enough was enough.
Keep in mind the song that all of us cancer folk sing: “everyone’s experience is different.” Based on my personal situation, and after a medical consult, this was the right decision for me.
I wanted to know what to watch out for, so my doc said:
1. Unexplained weight loss 2. Persistent cough 3. Neurological issues (i.e., seeing things that aren’t there, blurred vision, etc.)
Obviously, there are other signs of cancer recurrence, but those are what my oncologist wanted me to be particularly wary of. And then he noted that he couldn’t remember the last time one of his HER2+ patients had a relapse, so effective is the Herceptin that we’re given. But it has heart risks.
Since I’ve been off letrozole only a few days, I’m still experiencing most of the side effects–it will take several weeks to shake them.
I almost don’t know what to do with myself, and I’d be beside myself with joy if it weren’t for a possible heart arrhythmia (!) that I am experiencing. I’ve already scheduled an appointment with a cardiologist.
Yeah, I’m miffed that there’s always something with cancer. A week prior to my onc appointment I’d been in my car at a traffic light when I felt heart palpitations, sort of–and then I started seeing dark spots, like you do before you faint. The episode passed, but I had been having those brief palpitations for months, minus the spots. Maybe once a day? Maybe less.
And over a year ago, I went in for a regular health check-up, during which time the nurse practitioner checked my vitals and noted that there was some irregularity in my heartrate.
Just like with my cancerous lump, I waited, thinking would go away. But chemo and especially Herceptin are cardiotoxic, and aromatase inhibitors have been associated with heart arrhythmias. So just as soon as I got off the cancer carousel, I’m getting on the cardiac one–until I’m able to rule out problems.
I have both a 3-D mammogram and an EKG next week, and I’m way more worried about the EKG. Who would have expected that from a breast cancer survivor?
Warning: This is going to be a bit of a gripe-fest…
This coming week marks my one-year anniversary of taking letrozole, an aromatase inhibitor designed to reduce the risk of recurrence of my breast cancer by reducing the levels of estradiol (precurser to estrogen) in the body.
Aromatase inhibitors are problematic. Significant numbers of women discontinue taking these medications prior to the planned end of treatment, and this is due mainly to side effects (Kadakia et al., 2016, The Oncologist).
A year into this, I can completely relate. When I was on tamoxifen, the side effects were less well-defined. With letrozole, they’re unmistakable.
Most infuriating are the physical ones, especially the arthralgia (joint pain). I’m an ardent exerciser, regularly engaging in rowing, lifting weights and interval training. Arthralgia puts obvious limitations on my workouts. Maintaining muscle is harder and as a result I need to work out more intensely. So I push it, but it feels like I’m treading water with an anvil tied around my neck. I know that working out and building muscle is going to be tough at age 54, but I question the benefits of a drug purported to lessen the chance of cancer recurrence when it’s affecting my ability to engage in something (exercise) which is strongly associated with a decreased risk of cancer (Cannioto et al., 2020, JCNI). It doesn’t seem to make sense.
Another effect of the drop in estrogen is fatigue, which can be intense by the end of the day. Then, okay, I go to bed early, but my sleep quality is hit-or-miss. Sometimes I experience weird “restless leg” symptoms. This is a “gripping” or aching sensation that can only be aleviated by moving my legs. Any position that feels comfortable at the moment soon won’t, and I do an awkward dance as I move around in bed. Not a great recipe for falling asleep. Luckily this doesn’t occur every night, but when it does, it impacts the next workday.
As a side note, I usually take magnesium supplements before bed, not only to aid in muscle recovery, but also to help with sleep. I don’t know what my nights would be like if I didn’t take them regularly, and I’m not willing to find out.
Over time, the pain in my joints and limbs has increased. It’s most pronounced in my fingers, toes, ankles, hips and elbows, and I’m generally most achey as I’m going to sleep and when I wake in the morning. Sometimes it’s bad enough that it wakes me at night–usually a burning sensation in my fingers and toes–but that happens only occasionally.
By the way, in case you’re wondering if that’s bone metastases instead of side effects, trust me, I’ve already thought about that. I’ve also done the obligatory googling, and while I’ll let my oncologist know about the pain at my next appointment, I don’t think it’s metastasis. These symptoms are just your garden-variety letrozole side effects.
One of the most striking physical side effects (that I could actually show to other people!) didn’t kick in until about Month 8 of taking the letrozole, when the stiffness in my fingers escalated to the point where several of them would lock up in the morning. If I made a fist and then attempted to open my hand, a few of my fingers would “stick” and, as I continued to try to straighten them, they’d suddenly sproing open.
I’ve already mentioned the physical fatigue, but there’s a deeper, darker side to this, which I’ve written about previously. The rest of my family — husband and two teenagers — are up and lively in the evening as I’m dragging my sorry butt to bed. I feel a strong disconnect from them. More specifically, I feel old, which is not surprising, since decreased estrogen is associated with ageing. I feel like I don’t belong with my family anymore, like there’s a distance between us. So, I’m taking a medication to help prevent a possible recurrence of my breast cancer, but the price I’m paying for that reduced risk seems pretty steep.
Adding to that feeling of disconnect is the sudden drop in my libido. Perhaps this would have been easier to take if I were single, or divorced (which is the direction it sometimes feels this is heading). I’ve already written about the issue here so I won’t rehash all my frustration. Suffice it to say that while sexual side effects are mentioned in the scientific literature and in doctors’ offices, they’re not really talked about from the standpoint of the effect they have on relationships. This is one of those intangible issues that is difficult to quantify and even more difficult to discuss.
There are also cognitive problems that involve (1) concentration, (2) focus and (3) memory. Listen, I need all three of those for work. I cannot express how crippling it feels trying to learn new convoluted financial software when my brain simply refuses to cooperate. Truly, taking a mindfulness break helps immensely, but it simply doesn’t solve the problem. It just keeps me from putting my fist through my monitor.
Ah, yes, irritability. Put that down as another side effect.
So I’m a year into letrozole and I’m searching through the scientific literature to see what, truly, are the rates of recurrence for women who discontinue the medication prematurely, and what other factors come into play in terms of reducing risks.
My goal is to get through at least five years of combined endocrine therapy (tamoxifen and letrozole), and I’m already more than halfway there, having finished two years of tamoxifen before I got on the aromatase inhibitor train. I mean, only two more years of this.
Maybe I’ve hit the high mark of side effects and they won’t get any worse? Maybe?
Note: the side effects I’ve mentioned are not the only ones that occur with aromatase inhibitors. These are simply the big ones for me. Before you start any treatment, make sure you discuss with your oncologist what sort of adverse reactions you can expect and what you can do to mitigate them.
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.
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.
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.
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.
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”.
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.
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.
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.
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.
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.
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.
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?
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.
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.
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.
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.
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.
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.
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?