The thing about cancer is that the news hits you hard at once.
And it’s not like you get time to get used to it, because the diagnosis is LOADED. All those scary things that you’ve ever associated with the “big C” rush at you and there’s no real way to protect yourself.
It would be terrifying for anyone, but those of us currently in mid-life grew up at a time when cancer treatment was not as refined or targeted as it is now: visions abound of hospital beds, bald heads, bodies wasting away, vomiting, hopelessness. Most cancers were frequently fatal and diagnosis was the beginning of the end.
As we’re trying to process what this all means for us, for our future and for our families, others try to prop us up with cheers of, “Be a badass!” “Stay strong!” “You’ll beat this!” “You’re a fighter!”
So between juggling the cancer news and the “hang tough” messages from those around us, everything gets overwhelming. Our oncologist lays out a treatment plan and suddenly we need to learn a different language. Tumor types, chemo drugs, clinical terms, side effects.
I distinctly remember wanting to hide under my bed and wait for it to go away. There was so much I needed to do and I didn’t know how to get through it all. It seemed like an immense amount of work for one person.
And then it hit me. All I needed to do was show up.
I didn’t need to be the warrior that everyone was pushing me to be. The mere fact that I was going to my appointments on my scheduled day was enough. I wasn’t going to win a prize for being the best “infusee” or for absorbing the most radiation the fastest.
I didn’t have to fight. All I needed to do was endure and allow. To accept what was going on and move through it. And to breathe.
I brought my office work with me to my first infusion. I was going to be there for at least 5 hours so I figured I should use the time “wisely”. I fired up my laptop but soon the Benadryl that I was given to prevent adverse reactions kicked in and brought on drowsiness.
Suffice it to say I might have answered an email here or there, but did little else. The same thing happened during the next infusion, and the one after that. Eventually I realized that the wisest way I could spend my time was by giving myself permission to rest and ride out the treatments.
When infusion day rolled around, I learned to put aside my work duties and family responsibilities, and simply be. It was such an uncomplicated concept, the benefits of which rippled out beyond my treatment. Why did it take cancer to teach me that?
IMPORTANT: Please discuss the information below with your oncological and nutritional team prior to making changes to your diet!They will be able to provide you with the proper guidelines for your situation.
One common area of contention within the context of hormone-positive breast cancer is the effect of soy consumption on cancer risk. There has been some back-and-forth on this topic, and “to soy or not to soy?” is a frequently-heard question coming from newly-diagnosed cancer patients.
It was a concern for me. I became vegetarian at age 18 and consumed a soy-heavy diet until my mid-40s, at which point, partly spooked by warnings about soy, I backed off. As recent research shows, I needn’t have.
For a little background, the main concern for breast cancer patients is the presence of phytoestrogens in soy, known as isoflavones, and how they function in the human body. They have a mild estrogenic effect, which is why many women use them in supplement form to ameliorate the uncomfortable effects of menopause. In that sense, they are acting like estrogen, although it’s important to stress that they are not estrogen.
But given this similarity to estrogen, does soy increase the risk of breast cancer and breast cancer recurrence? In short, studies show that if you grew up eating soy and eat it daily, as is the case in many Asian countries where soy products are dietary staples, soy has a significant protective effective against breast cancer. Results of these studies have been inconclusive in Western populations, however this seems to be due to differences in diet: not only do Westerners eat considerably less soy compared to Asians, they also don’t eat it throughout all stages of their lives.
Is there a difference in how these diverse cultures handle isoflavones? It appears that a major isoflavone-derived metabolite, equol, has well-documented antioxidant and estrogen-like actions and seems to be associated with numerous positive outcomes, but only about 30-50% of the human population has the gut microbiota to derive it from the diet. There is a need for more research on how this conversion takes place and under what conditions.
But most importantly, as stated by the American Institute for Cancer Research, “Population studies don’t link soy consumption with an increased risk of any cancer.” While the childhood and adolescent consumption of soy is what seems to offer the most long-term benefits, for those who increased their intake at a later age or don’t eat it regularly, the current view is that even if eating soy doesn’t significantly reduce your risk of cancer, there is no definitive evidence that it will make your risk worse.
For me, that means that I will continue using soy as an important protein source in my diet.
Overdoing anything is not good, so don’t overload on overly processed soy supplements in the hopes of preventing cancer development and/or recurrence — particularly if you’re postmenopausal and not a life-long soy eater. Having said that, there is ample room for minimally-processed soy foods (tofu, edamame, tempeh, miso) in a healthy plant-based diet, and that will definitely benefit you.
No single thing will prevent cancer 100%, so you’d be well-served to consider your lifestyle as a whole. As a matter of fact, Zhang et al. (2017, Cancer) noted that “[w]omen who consumed high levels of dietary isoflavone were more likely to be Asian Americans, young, premenopausal, physically active, more educated, not overweight or obese, never smokers, and drank either no alcohol or <7 drinks per week.” [Emphasis mine.] That means protection came not only from soy; the women were also engaging in other behaviors associated with a lower risk of breast cancer. Bottom line, lifestyle matters!
Finally, this is only a brief summary of what I found. Soy is a topic that I’ll be keeping my eye on and will report back as newer studies are published.
In the meantime, here are three excellent reader-friendly websites for more information:
References for this post (all articles are available online free of charge):
Baglia ML, Zheng W, Li H, Yang G, Gao J, Gao Y-T, Shu X-O (2016) The association of soy food consumption with the risk of subtype of breast cancers defined by hormone receptor and HER2 status. Int J Cancer. 139: 742–748. https://doi.org/10.1002/ijc.30117
Lee SA, Shu XO, Li H, Yang G, Cai H, Wen W, Ji BT, Gao J, Gao YT, Zheng W (2009) Adolescent and adult soy food intake and breast cancer risk: results from the Shanghai Women’s Health Study. Am J Clin Nutr. 89: 1920-1926. https://doi.org/10.3945/ajcn.2008.27361
Mayo B, Vázquez L, Flórez AB (2019) Equol: A bacterial metabolite from the daidzein isoflavone and its presumed beneficial health effects. Nutrients. 11: 2231. https://doi.org/10.3390/nu11092231
Zhang FF, Haslam DE, Terry MB, Knight JA, Andrulis IL, Daly MB, Buys SS, John EM (2017) Dietary isoflavone intake and all‐cause mortality in breast cancer survivors: The Breast Cancer Family Registry. Cancer. 123: 2070-2079. https://doi.org/10.1002/cncr.30615
When I asked my oncologist about soy, he shrugged and said, “Yes, it’s true that soy foods contain plant estrogens…but you’re not a plant.”
If there is a time that I’m going to feel anxiety, there’s a good chance it’ll be during my yearly mammogram. This year it came around the same time that my oncologist gave me permission to stop letrozole (and there was stress preceeding that appointment), but also great fear associated with my perceived cardiac arrhythmias, for which I have several visits with a cardiologist lined up.
To top that off, a family stressor followed on its heels, which I won’t go into but one that portends difficulties in the future. This last anxiety-provoking event used the previous stressors as a springboard and exploded into something even bigger. I was primed for anxiety and it took me for a ride until I found the traction to dig my heels in and slow down.
The worst part is, none of this stuff will simply go away.
Often, when people speak of anxiety-provoking events, they’re described as stressful things like a tense meeting with the boss or college finals or tight work deadlines. Admittedly these are all nerve-wracking, but they are also time-limited.
Then we have something like cancer.
I remember listening to a talk about anxiety where the lecturer tried to give the audience perspective about what was really going on, and he asked: what’s the worst thing that could happen? “You’re not going to die,” he assured us. And it’s true: let’s say that you fail all your final exams, but you’ll survive, even if you have to retake the classes.
Cancer survivors can attest to the fact that we suffer a different flavor of anxiety. There is no deadline on our stresses. They are thick and cling to us, like caramel sauce on the inside of a coffee cup, thinned by the passage of time, but leaving a film on our lives. Our hope is to get past the two-year mark, then five. Ten, if we’re so lucky.
Often, we hear about the success of treatments only to realize that the success is based on the majority of patients lasting until the end of the study, which might have been only five years.
Having someone tell you that you have a 95% chance of surviving five years is, well, underwhelming, especially for those of us who had premenopausal breast cancer. I mean, yeah, I HOPE I can last five years.
So, what to do? If there were ever a time to practice non-attachment, this is it. For some of us (present company included), it is excruciatingly difficulty to release expectations–I want, even NEED, to be assured that everything will be okay and then rest easy with that.
But I promise you, clinging to the desire for things to be different only causes suffering. It also robs you of the joy of what you are experiencing right NOW–a beautiful sunrise, the softness of a pet’s fur, the richness of a cup of coffee, the coziness of a warm blanket. We are so wrapped up in fears of what the future holds that we miss the magic of what is before us.
Now is the only moment that exists, so truly, it’s the only moment that is real and certain.
Everything else is either history or what we concoct in our minds.
So this time of the year, I have to sit back and sense the Earth under my feet, feeling into how it supports me. This is what it feels like to be here now. No matter how many times I remind myself of this, I know I’ll have to do it again when the next stressor hits. That’s okay.
This isn’t the first time I’ve written about anxiety and it certainly won’t be the last. But practicing mindfulness, every time I go through this experience, I reign in my emotions a little earlier and start feeling better a little faster. When I look back at what happened I realize I’m making progress, and that’s what really matters.
That shouldn’t be surprising, given that it was my “scan-week” of the year, but even I was taken aback by how I’d felt.
For at least two weeks prior, I’d had that low grade, persistent anxiety simmering, the kind that you can *mostly* ignore during the day, but wow, does it rear its ugly head at night. I’d fall asleep, only to wake several hours later and then the mental battle of focusing on my breath vs. intrusive thoughts would begin. You’d think that by now I’d be better at shifting my focus, but meditation is always a work in progress.
Tuesday was my 3-D mammogram. That’s the one that verifies that I’m still in remission from breast cancer. Oooo, just a tad bit anxiety-provoking, but since I had seen my oncologist not even two weeks before and he’d already checked me out, I wasn’t overly frightened. I admit, it didn’t help that I couldn’t bring my husband for support (hello, COVID), but I felt positive going in.
And everything looked good. For that day it calmed my scanxiety.
But by Tuesday evening, I was frightened again.
This had ceased to be about breast cancer. Now it was all about my heart. I mentioned in a previous post that I’d been having little “heart episodes”. My blood pressure monitor kept signaling “irregular heartbeat detected” and my heart rate monitor would show funny spikes when I was working out. The app I was using for measuring heart rate variability (HRV) would show heartrates up to crazy numbers like 262bpm, and from time to time I’d get heart palpitations.
To complicate matters, the Herceptin I had been given for my triple-positive breast cancer is known for its cardiotoxicity and there are heart-related side effects associated with the endocrine therapy that I’d been taking for the past three years.
But on top of that, my heart would pound when I got anxious. No matter what I did, I couldn’t ignore it–I could hear it. And that pounding made me even more anxious.
That sounds like a never-ending loop right there.
Somehow I made it to Thursday and my cardiology appointment. The mere thought of having a scan that focused on my heart was anxiety-provoking but the medical assistant engaged me in conversation and kept my mind occupied. Even my blood pressure came out as in the 120s/80s (can’t remember the exact number), which was quite normal. She ran the EKG and went to get the doc.
So right now this story is running long, but the bottom line is that my EKG was perfectly normal. The cardiologist, an older man with a gentle voice and pleasant and calm demeanor, asked a lot of questions…and ultimately told me that he didn’t think my heart had issues.
But he suggested that we run a couple more tests: echocardiogram and 14-day monitoring. That way we could rule out anything serious.
And I, the one who hates scans and the anxiety they bring, felt so much relief that he was willing to humor me, so that I would definitely know if those “episodes” I’d experienced were real or not.
I have everything scheduled now. And wouldn’t you know it: I didn’t experience any weirdness all weekend. No perceived skips, no palpitations. I am rarely aware of my heart beating and no longer hear it in my ears.
So I had several days’ reprieve.
Sunday night I felt it again. Let’s see where this goes.
I had mentioned to my cardiologist all those technological gadgets that I had, my blood pressure monitor with irregular heartbeat detection, my heart rate strap that can measure R-R intervals, my watch that has optical heart rate monitoring capabilities. And he said, the new tech has its benefits but it can be inaccurate.
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?
Following up on last week’s exercise post, I wanted to focus on two recent studies that really drive home the benefits of physical activity for breast cancer survivors. If you’re not exercising now, here’s why you should consider it.
In 2017, Hamer and Warner published a review in the Canadian Medical Association Journal (Open Access link here). They analyzed 67 existing studies in an effort to ascertain what lifestyle factors were most important in reducing the risk of breast cancer recurrence in survivors.
The results were striking: of all the lifestyle variables that the researchers looked at, exercise came out on top. They found that engaging in moderate exercise resulted in a 40% decrease in cancer recurrence. This included easily-adoptable, low-cost programs such as brisk walking.
I want to stress: they weren’t talking about doing crazy-high amounts of exercise, but simply adhering to the current physical activity recommendations for US adults, which are as follows (summarized by the American Heart Association and taken from their website):
Sadly, only 13% of recent breast cancer survivors actually met those exercise guidelines, and that number dropped even more as time went on. Consider how that affects overall cancer rates, when we talk about our chances as survivors: if the vast majority of the population is not engaging in a beneficial habit, the reported recurrence rates will reflect that. However, if you do incorporate exercise into your life, one could argue that your chances of recurrence are significantly improved over the numbers usually cited.
In addition, an increase of at least 10% of body weight after breast cancer diagnosis, which unfortunately happens often, increased both risk of recurrence and mortality. Again, patients who exercised were able to avoid this weight gain, improving their chances for disease free survival.
Nonetheless, while it seemed relatively straightforward to achieve the percent reduction in recurrence, the researchers stressed two very important points: (1) this reduction came after finishing treatments, not in lieu of them, so one should not assume that exercise would necessarily take the place of conventional cancer treatments, and (2) sadly, some cancers will recur even if the survivor is doing everything “right” and so if there is a recurrence, it should not be taken as the individual not doing enough. That’s the cruel unfairness of cancer.
The second study was original research with high-risk breast cancer patients by Cannioto et al. (2020), published in the Journal of the National Cancer Institute (Open Access link here). The study participants filled out a questionnaire about their exercise habits at four time points: (1) when they enrolled in the study after diagnosis (this question asked about pre-diagnosis exercise habits), (2) during chemotherapy, (3) one year after finishing treatment, and (4) two years after finishing treatment.
Once again, exercise was shown as having a significant impact: women who met the guidelines for physical activity (150 minutes/week of moderate exercise) before, during and after treatment had a 55% lower risk of recurrence and 68% lower risk of dying than those who didn’t meet the guidelines.
Even those who only started exercising after finishing treatment still had a significantly reduced risk of both recurrence and death compared to those who didn’t exercise at all. Additionally, benefits were also seen for those who consistently exercised, even if they didn’t fully meet the guidelines. So it seems that any exercise that these high-risk cancer survivors did was still better than not doing anything at all.
The same holds for you!
Both of these studies convey the importance of engaging in physical activity. Exercise is critical for the well-being of all humans, but even more so for breast cancer survivors. Think: when we receive a cancer diagnosis, we are ready to undergo potentially dangerous treatments, risking debilitating side effects that leave us bald, exhausted and wretched.
So why not engage in something as beneficial for body and spirit as moderate physical activity to help prevent the possibility of having to repeat the cancer treatment again?
A few more bits of information:
The easy-to-read executive summary of the US Physical Activity Guidelines for Americans can be found here.
For a plain-language synopsis of the Hamer and Warner (2017) review, see this Healio interview with co-author Dr. Ellen Warner.
Keep in mind that terms such as “moderate” and “intense” are relative to YOU. someone just starting out is not going to be able to handle the same level of intensity as a highly-trained individual, and there’s nothing wrong with that. Start where you are–it’s okay.
Finally, Dr. Robert Sallis, chairman of the American College of Sports Medicine’s Exercise Is Medicine inititative, has said, “If we had a pill that conferred the proven health benefits of exercise, physicians would prescribe it to every patient and healthcare systems would find a way to make sure every patient had access to this wonder drug.”
In my last post, I whined about the repercussions of taking aromatase inhibitors (in my case, letrozole) as a way to diminish the amount of estrogen in my body, for the purpose of reducing the risk of breast cancer recurrence.
While I also mentioned letrozole’s effects on my exercise habits, in this post I wanted to drill down on one aspect in particular: muscle loss.
Before I go further, I need to add a disclaimer. Since the time the first photo was taken (the morning before my first chemo infusion), three and a half years passed and I went through menopause. Notably, the menopause was pharmaceutically-driven, starting with tamoxifen and then, after my hormone levels were low enough, continuing with letrozole. However, my body now is dealing with the same aging effects as someone who had transitioned naturally.
Except that my transition came before its time.
The below photo is from April 27, 2017, before I headed to the infusion center for my first dose of chemo. I had been training as normally as I could, under the conditions of lumpectomy and port placement that I wrote about here, and finding work-arounds for exercises that I’d been told not to do.
While I lost some size and strength throughout my chemo infusions (here are all the photos), I was able to bounce back and had a particularly strong 2018 (sorry, don’t have good photos of that). But as the endocrine therapy with tamoxifen continued in 2019, to be replaced by letrozole in 2020, I could feel the effects of low estrogen.
On December 11, 2020, I struck the same pose again for sake of comparison.
As far as muscle appearance is concerned, I have experienced a slow downhill slide. My shoulder is not as peak-y, the biceps itself has decreased in size and I even find it more difficult to hold this muscular contraction. In addition, there’s more looseness in my skin, particularly at the back of my arm, which in part may be due to loss of collagen, also affected by estrogen levels (nice dermatological review by Shah & Maibach, 2001, Am J Clin Dermatol).
I’m busting my butt trying to increase the amount that I’m lifting, but I’m not making progress. Not surprisingly, the decrease in estrogen plays a role in this. As stated by Chidi-Ogbolu & Baar (2019, Front Physiol), “estrogen improves muscle mass and strength, and increases the collagen content of connective tissues”.
It makes sense then that lack of estrogen is going to be detrimental to maintaining muscle. To that point, Kitajima & Ono (2016, J Endocrinol), working with animal models, have found that “estrogen insufficiency leads to muscle atrophy and decreased muscle strength of female mice.”
Not just mice, obviously.
This information comes as no surprise to any woman who’s gone through menopause, I’m sure. But the experience of being slammed through menopause instead of having the opportunity to transition more gradually is yet another frustrating way that having cancer pulls the rug out from under you and reminds you that you are not in control of your life.
Slowly, yoga is becoming more important in my life and my view of fitness is changing. Good thing too, since I can’t keep beating myself up like this.
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.
On October 23, 2017, I finished radiation therapy for my stage 1, triple-positive breast cancer. That was three years ago. At that point, I imagined myself being through all the “tough stuff”. I’d already had surgery that March, spent the summer enduring chemo infusions, and then six weeks of radiation in autumn.
October 23rd seemed like a “marker” day. I rang the gong in the radiology waiting room, with all the staff present and smiling. It was a day that I knew I’d remember.
Except that it didn’t end up being a very important milestone. At that point, I didn’t fully realize that the treatment doesn’t really end. I can only say that it’s been three years since I finished chemo and radiation. But the truth is that a few weeks after that I started tamoxifen (surprise!), which came with its own worries. And I still had more than half of my infusions of Herceptin (trastuzumab, a monoclonal antibody) left, which stretched into April of 2018.
I guess next April, I’ll mark THAT as another milestone.
This coming December I can mark a full year of taking letrozole (aromatase inhibitor), which came after two years on tamoxifen. But I’m still supposed to be on that stuff for “a few more” years – it’s funny that my oncologist has not been specific about that. And I’m not very interested in asking, unusual for me.
What once seemed like a very clear treatment plan, a definite path through the cancer jungle, now seems fuzzy and gray. In one of my first posts here, I talked about being able to put everything behind me, with the more time that passed after “finishing” chemo and radiation. Who was I kidding?
When mammogram time comes up, there’s that familiar rush of anxiety, knowing that I’ll be sitting in that comfy robe in the quiet waiting room, pretending to enjoy a cup of tea, but my tummy will be floating and I’ll try to not to think of much. That’s the work of cancer.
When I wake up in the middle of the night with my hand aching and fingers painfully stiff, medication side effects that are deemed, by the medical community, to be “worth it”. That’s the work of cancer.
When I wonder whether my 18-year-old daughter should be doing breast self-exams now. And whether she’s be hurt by whatever “mistake” my body made in not cleaning up some tumorigenic genetic defect. That’s the work of cancer.
So it makes all those “milestones” a little less fun and exciting.
But I have to be honest — I still note the time that’s passed by. For my breast cancer, the two-year mark is most important, followed by the five-year mark and then the 10-year one. Each year cancer-free makes me more cocky. But the truth is, one “bad” scan, and I’m back to square one: cancer patient. And then I’ll regret not having appreciated those milestones more.