I hit another cancer journey milestone this past week: my six-year oncology appointment.
Like my last few appointments, this one felt commonplace and unintimidating…and if the nurse had let me sit down for a couple of minutes after coming into the exam room, my blood pressure would have been lower. As it was, the reading was not that far from normal.
For the first time since cancer, my bloodwork is all normal!!!
One other thing that was strikingly normal: for the first time in six years, since all the cancer madness began, all my bloodwork, both Complete Blood Count (CBC) and Comprehensive Metabolic Profile (CMP), was completely normal. Nothing that would suggest a year’s worth of cancer treatment in the past.
This is so curious because for years, nothing felt normal.
Now everything is.
Ironically, it was my oncologist who was experiencing illness and I had to switch my appointment time so that he could get to his doctor.
I was hit by the realization that everything that had felt out-of-control and hopeless six years ago no longer existed. I was the one who had kept the idea of cancer alive in myself. I still defined myself as a cancer survivor because perhaps I needed some way to justify what I considered to be my shortcomings, as in, “I used to be able to do this, but…”.
This was a battle I fought in but only memories remain. In the present moment, there’s only silence.
Returning to the cancer center for this appointment felt like I was visiting a battlefield from a war that I had fought long ago. The echoes of battle cries…just the wind. The clashing weapons and falling bodies…not there anymore. This may sound like such an overly theatrical description, but that’s exactly what it seemed like.
This doesn’t mean that I’ve got the rest of my life figured out. There are still so many unknowns, including an increased chance of cancer recurrence — and I still need to schedule this year’s mammogram, something else that slipped my mind as I was basking in the idea of being “normal”.
But that tortured soul who, on top of all the other stressful things going on in her life, was hit with a cancer diagnosis…she doesn’t exist anymore. If I’m so unfortunate as to have the cancer come back, she won’t be experiencing the aftermath.
I will. And I feel like I’m so much better equipped to handle all that uncertainty than she ever was.
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I still call myself a cancer survivor. But it’s only one of a long list of “skills” that I have on my resume.
While this isn’t exclusively an exercise blog, if you’ve perused my posts you’ve probably noticed that I’m a huge proponent of exercise for both cancer patients and survivors (well, actually for everyone; but see my important message at the bottom of this post).
The best way to achieve this is to start exercising right now, if you are not yet, no matter what stage of the cancer experience you’re in.
There is a growing body of research that shows the benefits of exercise for cancer folk (I’ve written about it here). But the fact is that only about 17-37% of cancer survivors meet the minimum physical activity guidelines set out by the American Cancer Society (Hirschey et al., 2017, Cancer Nurs) even though doing so reduces the risk of cancer recurrence by 55%, not to mention the improvement in quality of life (Cannioto et al., 2021, J Natl Cancer Inst).
Exercise, the Cancer Fighter. In the not too distant future, your oncologist might hand you an exercise prescription as part of your cancer treatment.
Now, there is a call to include exercise as an adjuvant therapy for cancer for those who are currently undergoing chemotherapy. During the Oncology session of the 7th International Congress of the Spanish Society of Precision Health (SESAP) that took place in Spring 2022, Adrián Castillo García, a researcher at the Barcelona Biomedical Research Institute (IIBB) of the Spanish National Research Council (CSIC), reviewed recent studies regarding the benefits of exercise during cancer treatment, including the potential role that it had in “modulating the tumor microenvironment and immune function.”
You can read a synopsis of his statements here in the section entitled “Exercise as Oncological Therapy” (starting towards the bottom of page 2). Castillo states that physical exercise “has been shown to have the ability to modulate the tumor environment… . This modulating effect translates into an improvement in the efficacy of chemotherapy and other oncological treatments.”
Castillo goes on to say that “prescribing doses of physical activity at an established intensity and volume can be very decisive in combating the tumor microenvironment, but this preliminary evidence must be confirmed in trials on humans to ratify the role of exercise as a treatment capable of improving the efficacy of the main therapies.” (All quotes from the aforementioned synopsis.)
With such promising results, it’s quite possible that future cancer treatments may be a combination of medicine and physical activity.
Ok, so say that you are not an avid exerciser, but motivated by these studies you’re willing to give regular exercise a go. What do you do when you’re already feeling fatigued from treatments?
I wrote about this here, but in a nutshell, the idea is that you need to decide what the right starting point is for you, and this will depend on your previous experiences, both physical and emotional, with a physical activity program. It will also depend on what you can manage at any given time in your treatment.
Starting an exercise program? Make it something that you can do and enjoy, and it will become a life-long habit.
Ask yourself, “what is reasonable for me?” But don’t respond to that with a t-shirt slogan-type answer (“Exercise? I thought you said extra fries?!?”) that immediately shuts down the idea. Admittedly, there may be times during treatment that getting yourself to the toilet without help is a momumental achievement. But that will pass. And exercise will make you feel more in control of your health and better overall.
IMPORTANT: Find what you can do and then do it as consistently as you can.
This may mean starting very simply [always get your doctor’s okay first!]. Choose an activity, duration and frequency, say, brisk walking for 20 minutes a day, three days a week. Follow that pattern for two weeks, then add to it–perhaps another 10 minutes–not to overwhelm yourself, but simply to push the edge a bit (you can always ease off if you need to, give it a week and increase again). If possible, increase some aspect of your program every couple of weeks, as it suits your condition. In the example of walking, incorporate a flight of stairs and gradual upper body movements: first pumping the arms, then hand weights, eventually strength training for both upper and lower body.
The timing is up to you.
If a walking program feels too easy for you, train at a higher level, but remember that the same concepts still apply: (1) consistency, (2) progression, (3) balance in your activities. If you’re interested, read my post about my three “pillars” of fitness.
Most importantly, start, progress gradually and keep it up for the rest of your life.
If your starting point is a standstill, this will take patience. But I PROMISE you, no matter what you can muster, it will still be better than doing nothing.
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I know I already said this, but it bears repeating, especially for cancer patients and survivors: do not start any exercise program without consulting with your medical team first. While I feel that improving your physical fitness is one of the best things you can do for yourself, every body is different and every cancer situation is different. Talk to your doctor and let them know what you’re planning to do.
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.
Soy (here, both tofu and edamame) is a staple in Asian and vegetarian cuisines, and is the only plant-based protein that is a complete protein.
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.
Take note:
As with other foods, unprocessed and minimally-processed soy is still the healthiest option.
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
Messina M, Rogero MM, Fisberg M, Waitzberg D (2017) Health impact of childhood and adolescent soy consumption. Nutr Rev. 75: 500–515. https://doi.org/10.1093/nutrit/nux016
Nagata C (2010) Factors to consider in the association between soy isoflavone intake and breast cancer risk. J Epidemiol. 20: 83-89. https://doi.org/10.2188/jea.je20090181
WuAH, Yu MC, Tseng C-C, Pike MC (2008) Epidemiology of soy exposures and breast cancer risk. Br J Cancer. 98: 9-14. https://doi.org/10.1038/sj.bjc.6604145
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
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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.”
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.
Yes, this should be me right now, since I’ve eagerly awaited this day for a long time. But it’s complicated…
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.
‘Round and ’round and ’round we go…
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?
In case you’re wondering why there’s all this mindfulness stuff on a cancer blog, here’s a reason: a recently published article in Science – Translational Medicine (Perego et al., 2020) provides laboratory evidence for the benefits of reducing stress levels for cancer survivors. It has to do with the effects of stress hormones on cancer recurrence.
In this study researchers looked at the cancer cells that are sometimes pushed into dormancy by treatments like chemotherapy. Cancer recurrence may be a result of such cells being activated again at some point in the future.
Findings in the lab may explain what’s going on in the human body–and ultimately lead to treatments that prevent cancer recurrence.
Perego and colleagues were able to recreate such dormant cancer cells in the lab, then found that they could awaken them again using neutrophils, a type of white blood cell that, under certain circumstances, can be harnessed by tumor cells to aid in their proliferation.
Those “certain circumstances” turn out to involve stress hormones. The researchers found that stress hormone + neutrophils = woken cancer cells. The process is a cascade of events: the stress hormones caused the neutrophils to produce S100 proteins, which in turn created lipids, and it was those lipids that caused hibernating cancer cells to stretch and rub the sleep out of their eyes.
Keep in mind that these studies were conducted in petri dishes (for “proof of concept”) and then in mice, which does not equate to eliciting the same response in humans. In fact, the connection between stress and cancer is still inconclusive in human studies, partly because in the past researchers have noted that some of the coping mechanisms that humans use to deal with stress (smoking, drinking, overeating, etc.) may be the more important culprits that lead to cancer.
Learning how to keep stress under control may be one of the most important things that cancer survivors can do to help prevent canver recurrence.
Nonetheless, Perego and colleagues were able to show that stress and neutrophils may form a path by which dormant cancer cells awaken in humans, leading to cancer recurrence, and this opens the door to more directed future research. Note, this is certainly not the only way that cancer can recur, but it provides an opportunity to develop drugs that can break the cascade and thereby prevent recurrence in some cancer survivors.
To be clear, this doesn’t mean that if a cancer survivor is stressed out their cancer will definitely come back, because there are a number of intermediate steps that need to take place within that cascade, but this is still a good reason to practice stress-reduction techniques. It might help you remain cancer-free.
If you have access to a university or hospital library, you can look up the original research article using the following PubMed citation (links to abstracts below; once the free full-text PMC version is available, I will link to it here):
Perego M, Tyurin VA, Tyurina YY, Yellets J, Nacarelli T, Lin C, Nefedova Y, Kossenkov A, Liu Q, Sreedhar S, Pass H, Roth J, Vogl T, Feldser D, Zhang R, Kagan VE, Gabrilovich DI. Reactivation of dormant tumor cells by modified lipids derived from stress-activated neutrophils. Sci Transl Med. 2020 Dec 2;12(572):eabb5817. doi: 10.1126/scitranslmed.abb5817. PMID: 33268511.
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.
Whatever you can do right now is enough to start out with. Just keep moving!
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.
It’s never too late to start, but it’s never too early either! Pick a sport and make it yours!
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?
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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.
Tailor your exercise to your abilities…and then keep going!
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.”
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.
No matter how tired I am in the evening, some nights are restless and NOT refreshing.
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.
The disconnect from my family makes me feel alone…and old.
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.
This would be me. If I were a baboon. And used the Oracle Financial System.
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?
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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 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.
You’d think that by now, over a year since finishing most of my breast cancer treatment, I would drop the subject and get on with things. But, no, cancer isn’t like that — and apparently, neither am I. Just when I think I’ve moved on, something else comes up. So here goes:
Breast cancer has had me see-sawing between two states of mind.
On the one hand, when I was going through treatment, I didn’t want people to feel uneasy talking to me (because they do!). I downplayed the cancer diagnosis and tried to be as matter-of-fact as possible, all with a pleasant smile and carefree shrug. Yeah, surgery-chemo-radiation, no biggie. My focus was on mitigating their uncomfortable reactions — in my mind, they were the ones needing the comforting and support.
That’s because telling someone I had cancer often made them squirm. They didn’t know the “right” thing to say, afraid of hurting or upsetting me, even though the reality was that what was inside my head was far worse than anything they could have said. So I always tried to crack a joke about my bald scalp or discolored nails as if to tell them I’m cool with it.
This extended into post-treatment life. Since I feel a little distance between the disease and me, I don’t always remember that I can catch people off guard when I talk about cancer. People still blush and stumble on words, looking like they want to change the subject. I always try to make it no big deal.
But on the other hand, the reality is that cancer is serious. Treatment can be all sorts of horrible and there are no guarantees about anything. Everyone who’s had breast cancer has to live with the uncertainty of its return. And with the large number of women who have experienced or are still wading through different stages of treatment, there’s a lot of suffering going on.
I know, I know, I know. Things will be fine.
Except when they’re not.
And so, I struggle with people telling me not to focus on the past. Obviously, that would be helpful. But it’s not easy, because even when treatment is over, the fear remains. Cancer strode in like an arrogant rake, dragged me around the block a few times and left an indelible mark on my psyche. My health is back and I’ve regained a lot of physical strength, but there’s that niggling fear that cancer will return and take it all again, and the emotional pain associated with that potentiality stifles any celebration. It was easier to focus on getting through chemo and radiation than to wander into the Wild West of the future.
So I fight with myself. Sometimes I need to talk about how miserable it was and how angry it made me (one side of the seesaw), all the while not wanting to make people uncomfortable about it (the other side). That, of course, is not a successful combination. Ultimately, I put on a brave face, take a deep breath and quietly hurt inside.
But don’t worry, after I write about it, I can shake off these feelings and I’m okay.
Today is my 3-D mammogram, the one that will either confirm that I’m in breast cancer remission or that I’m going to have another rotten year (or more). Two years ago, around this time, I was completely racked with anxiety in preparation for the diagnostic mammogram and ultrasound that would detect my cancer.
I feel placid. Granted, I do self-exams on an almost-weekly basis (it’s a survivor thing) and was checked out by my oncologist early last month, so I know there’s nothing palpable there, although the 3-D mammogram could pick something smaller up. But I’ve also matured in my ability to let go of thoughts that drag my mind away to wild extremes, and instead accept what is happening in the moment.
I admit that I’m holding off on travel and hair expenses until after my mammogram, because if my cancer comes back, the money spent on them would be better put towards treatment. Neither a cross-country flight nor an edgy new haircut would be in the cards for me.
If I could have one superpower, it would be to remain calm in every situation.
Another reason for waiting on making plans? It’s because the agony associated with desperately clinging to the desire to be cancer-free and then having those hopes dashed is excruciating. So for the moment, hanging around in limbo with less emotion invested in an outcome provides more comfort.
I started meditating in an effort to free myself of expectations. Today I am able to make space within myself to hold the possibility of both remission and recurrence, and then to think about neither.
So I sit in a comfy robe as I wait for the radiologist’s assessment, feeling the warmth of the cup of tea in my hand. I am here now, focused on the present instead of potential outcomes. And this is the most peaceful place to be.
Shortly after I wrote the above, the radiologist came in to confirm the good news. Another year, another clean bill of health.
Last year when I got the “all-clear” I was still finishing up treatments. And the news felt like a huge release.
This year, I felt much calmer. Not gonna lie — somewhere inside, try as I might to release all expectations, I still expected to be okay. But I was able to not focus on the outcome of the mammogram and instead go with the flow of the day. This is a first for me, so my ability to maintain that level of calm may be more significant than being cancer-free.
Oh, who am I kidding? Being cancer-free kicks ass!
Frantic Shanti 