Just Do It: Breast Cancer Survivors and Exercise

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.

For a plain-language synopsis of the Cannioto et al. (2020) paper, see this article in breastcancer.org.

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.”

The two studies here show exactly why!

“The Gun Show”: Assessing Biceps Muscle Loss Due To Endocrine Therapy [PHOTOS]

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.

This is my 51-year-old biceps muscle, before I started the pharmaceutical portion of my breast cancer treatment.

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.

Is something missing? This is my 54-year-old biceps muscle, struggling to keep up. Note: I am still working out as hard as I can!

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.

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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.

A Year on Letrozole

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.

Look, Ma! No Libido!

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

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

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

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

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

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

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

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

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

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

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

There Goes Another Cancer Milestone…Big Deal

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.

I really thought I’d have said “goodbye” to all things cancer by now, but its spectre still seems to follow me around.

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.

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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.

How Mindfulness Helped Me Enjoy Cleaning

Full confession here: For years (ahem, decades), I disliked cleaning. I understood the importance of keeping things clean and tidy. But I never connected a positive feeling with it. Even as an adult, I would put it off. And off. And then someone would want to stop by and I’d be filled with dread. Never was the disheveled state of my home as apparent to me as when an outsider walked though the front door. Suddenly, I saw everything with fresh eyes, and it didn’t look great.

My approach to cleaning changed when I did one small thing: I noticed that my life was not one big overwhelming mess. It was a series of little challenges. So, too, my home. I stopped looking at everything as a whole. The whole was overwhelming. The whole meant a day spent cleaning and organizing. It didn’t have to be like that.

Just as life is in flux, so is the order in your home. Think of is as a wave, never, standing still. Things fall out of order and then are put back in order. Consistency in effort is what gives music to the dance. So you never have to “miss it”.

When I started looking at the work as distinct items, it was so much easier to take care of things. A small pile of papers. Scrubbing out the kitchen sink. Cleaning three windows.

It was that simple. I stopped thinking about “all the stuff I need to do”. Instead, I thought, “Oh, look! This is done already.” The boost of positivity that I got from taking care of the finite tasks was infinitely rewarding.

Most importantly, I made this a working meditation. My focus was on “now”. Scrubbing this spot of the bathtub. When it was done, I went to another spot. And that way traveled around the bathroom and out to other rooms until I was done for the time being. The rhythm made the day bright.

My personal strategy for cleaning mindfully:

  1. Set a timer for a reasonable amount of time, say, 10-15 minutes — you will quickly find a time that’s right for you based on how much you bristle when it’s time to start. Pick out a manageable “project” (or perhaps several) that you can get done during that time. Start when the timer starts. When the alarm rings, you’re done.
  2. Whatever you are doing, do it with a focus on the present moment. Give your full attention to what you’re working on. This is not the time to worry about what else needs to be done — stay with what you’re doing now, just as you would stay with your breath during meditation.
  3. Decide to do it again tomorrow. That stuff you did today? It’s done and no one can take that away from you, so whatever you do tomorrow only adds to the satisfaction of moving forward. Consistency is what makes this strategy work.
  4. Bring lightness and joy to the task. Play music, run an essential oil diffuser. Mark your success with staying on task by bringing in fresh flowers, even just foliage clippings in a colorful vase. Help yourself feel positive through the process. THIS IS NOT A PUNISHMENT.
  5. Pick up after yourself throughout the day. There is great power in putting things away right after you’re done with them. It feels so silly to even have to write that, but trust me, it’s a useful reminder, and one that I needed until it became a habit. (Who am I kidding? I STILL need the reminder.)
  6. The corollary to #5 is not to procrastinate on starting. If you start now and recycle five papers that you don’t need, there will be five fewer papers cluttering your desk. If you do that again tomorrow, that will be ten. Do it now. I have missed out on so many wonderful opportunities in my life because I put things off, a clean home being the least of them.
  7. Notice how good it makes you feel to invite order into your life.
I feel unsettled simply looking at this image. The disarray elicits anxiety, like I’ve lost something important, with little hope of easily getting it back.

I’ve found that the state of my surroundings is representative of my emotional state. And my emotional state likewise responds to the environment around me. When I was diagnosed with breast cancer, my world crumbled around me, physically and emotionally. Everything felt out of control and my surroundings reinforced that sense of despair. It took months for me to finally get a grip and move past the overwhelm.

Bringing order into my life was like an anchor that helped me recover, in many senses of the word. When I focused on what was good in my world, I spent less time worrying about what was wrong.

I’m betting you have 10 minutes in your day…

Hanging Tough With Letrozole — Or Not

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

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

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

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

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

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

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

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

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

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

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

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

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

For everyone else, hang in there!

Breast Changes, Revisted

One of the most popular posts on this site has been, “I Didn’t Expect THAT: Breast Changes“, so I thought it might be useful to revisit the subject now after a few years have passed since my initial lumpectomy for breast cancer.

Before my surgery, I had been frustrated by the lack of information about how much tissue would be removed along with my tumor. Or maybe I was just too afraid to search. In either case, I had prepared myself to lose a good chunk of my left breast. All the “after” photos of lumpectomies that I found on the internet were not pretty.

However, my tumor was only 1.6cm at its longest, and was on the outer upper quadrant of breast, and this turned out to offer me the best of all possibilities. There was amazingly little breast size lost. I was impressed. So was my surgeon.

So, fast forward to now, three and a half years down the road. The scars, one for the lumpectomy and the other for lymph node excision, remain very uninteresting in a good way. Only three sentinel lymph nodes were removed, and the scar for that sits up in my armpit. The lumpectomy scar is situated a bit further down and into the side of my breast. But it’s not obvious.

This is the original photo from my post on Nov 1, 2018, already over a year and a half since my surgery.
Three and a half years after surgery, today: the top scar is the lymph node excision, the bottom one is the lumpectomy.

The biggest issue I have had with the lumpectomy scar is that the scar tissue there feels like a biggish lump itself. Not frightening for me anymore, but when I went to a new gynecologist who, I suspect, forgot that I had had breast cancer (HOW? That’s the main thing I talked about!), she felt that area and said, “Oh, there’s something here” in that ‘I’m-going-to-say-something-scary-in-a-calm-voice’ kind of way.

Yes, it was just my scar tissue, but for a split-second I wanted to let myself freak out. Didn’t, but wanted to.

Sorry about the headlights…I just wanted to show how “normal” the shape of my breasts is. The weird thing is that it’s actually my left breast that is a bit BIGGER now. Who would have expected that? (NOTE: my left breast is also turned towards the camera slightly, accentuating its size.)

But the bottom line is, as time has gone by, the scars remain inconspicuous, and if not for the fact that my affected breast is actually a touch firmer and larger than the healthy one, something attributable to radiation treatment, there’s no obvious sign that I had breast cancer.

Not a bad deal considering what could have happened.

Pre- and Postmenopausal Breast Cancer — Hey, Talk About the Difference, Would’ya?

This follows on the heels of my last post, which discussed a couple of things that doctors say to cancer patients that I wish could be handled differently. Today’s post is specific to breast cancer and deals with menopausal status.

Okay, okay, the last time I wrote about this I concluded that healthful living was important regardless of whether you were staring down breast cancer before or after menopause. But I need to back up a bit, because there’s more that needs to be said.

It is a fact that the risk factors we hear about the ones associated with postmenopausal breast cancer, as are the recommendations for decreasing your risks. It took literally months for me to fully comprehend this.

Wish I’d known that earlier! Following my diagnosis, I beat myself up trying to understand what I did “wrong”, when in fact, I was doing everything “right”. I hadn’t worried about breast cancer because according to the informational breast self-exam card hanging in my shower, my risk was super-low.

Well, yeah, it was. For postmenopausal breast cancer.

It was only later, talking to my clinical counselor, that she described younger women at informational sessions for new breast cancer patients, looking dazed and not understanding why they were there. Vegetarians, non-drinkers, non-smokers, active exercisers, lean and fit. Isn’t that the lifestyle that we’re supposed to live in order to reduce our cancer risk? You mean it might not work?

The reality is that all bets are off for premenopausal breast cancer. The average age at diagnosis is 63, which means that there are a lot more postmenopausal women with cancer who have been studied, and so there’s more that we know about them. And that’s why everyone talks about them. For them, higher bodyweight is positively correlated with development of cancer, but higher weight in premenopausal women has a mildly protective effect. What’s up with that?!

I was already a full year into this blog, which I started a year after finishing my chemo, and I was STILL ranting about those stupid risk factors that mean nothing. But the truth was that I hadn’t yet connected the dots about menopausal status and cancer risk. My medical team kept saying things like “you’re still young”, and I didn’t understand what they meant by that, until my clinical counselor mentioned that things didn’t go as anticipated for younger (read: premenopausal) women.

So my anxiety about what I did to bring cancer upon myself could have been brought down a few notches (and my early posts on this blog would have been less acrimonious) had I known that the preventative information is aimed at women in a different stage of life.

Instead, I was frantically asking, “What should I do now? What should I change?” and was perplexed by the response: “Just keep doing everything that you’re doing!” “But that’s what gave me cancer!” (Obviously, it wasn’t, but in my mind, there was some preventative measure I hadn’t taken that left a crack open for cancer to squirm through.)

So, okay, no one knows exactly what causes breast cancer in an individual, and this is not the post to attempt tackling that question. But truly, it would help if doctors would admit that the view is *even* fuzzier if you haven’t yet gone through menopause. Psychologically, I would have been able to cut myself some slack, and perhaps it would have, just a teensy bit, eased that frustrating sense of helplessness.

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This is probably a good place to remind everyone that, even with everything we know about cancer and how it develops, there’s still so much we don’t know. Genes, environment, the alignment of the planets…who knows where the blame really lies?

Hey Doctors! Before You Give a Cancer Diagnosis…

From time to time, I think back on my cancer experience (who am I kidding, I think about it every single day!) and wonder how things might have gone differently. Generally, I write for the cancer patient, but this post is directed at the doctor who delivers the diagnosis.

So…dear doctors:

Think very carefully about what else you want to tell a new cancer patient right after you tell them that they have cancer. It better not be important, because they’re not going to hear it. Once you deliver the diagnosis, a cancer patient’s executive level cognitive processes freeze, making comprehension difficult. Any further speech sounds like the “wah-wah-wah” talk of the adults in Charlie Brown cartoons.

For example, I was told two things by my radiologist, when he came into the room after he looked at my diagnostic ultrasound: (1) you have cancer, and (2) you’re going to be alright. Guess which one of those points I didn’t remember. I’m sure my doctor was trying to be cheery and supportive, but I can guarantee you it didn’t work.

Let’s face it, no matter how gently a doctor tries to break it to you, being told that you have cancer is devastating. It’s perfectly normal to be blown back by the news because your life is going to change drastically for at least a while, and maybe permanently. But, geez, doc, you should be prepared to repeat the same info at least several times and cut out the unnecessary bits. Your newly-designated cancer patient is going to have to need time to process the news!

Tip to the patient: bring someone with you to your subsequent visits who’s good at taking notes and is on an even keel. I brought my husband but he barely wrote anything down. Turns out, he was just as shocked as I was and wasn’t taking the news any better.

Hey, doc, I get that this is hard on you too. So please don’t think I don’t appreciate what you do (especially these days!). But please consider some of these things before you deliver your next cancer diagnosis. Thanks. 🙂

Following up on that, doc, the next thing that I would suggest is that you not give overly specific responses to questions based on assumptions you’re making. I asked about the recovery time from surgery, since I was terrified by the thought of going under the knife. Mine was early stage breast cancer, and ultimately I had a lumpectomy, but that same radiologist had warned me that recovery would take 4-6 weeks. Up to a month and a half?!? I whimpered something along the lines of, “But I have to work,” at which point he reminded me that my health was more important than my job.

I don’t know where he pulled out such a long recovery time, but being given that sort of time frame compounded my anxiety. Maybe he also said that some people have a shorter recovery time, but of course, I wasn’t processing info well and all I could remember was “4-6 weeks”.

So I would recommend to doctors, (1) if you really don’t know specifics, don’t offer estimates–I was back to work the week after my surgery, btw–and (2) please don’t blow off a patient’s concern about the importance of other aspects of their lives, like going to work. Yes, ultimately, as the saying goes, “if you don’t have your health, you don’t have anything.” But for many of us, if you don’t have a job, you don’t have health insurance! Everything in our lives is interconnected. It’s all important. Please keep that in mind.

Hey, nobody likes to deliver bad news and I know you’re trying your best. But the only thing worse than telling someone they have cancer is being the one it’s being told to. So please, be gentle. You will go home that evening possibly bummed that another one of your patients has cancer.

The patient is going home that evening embarking on one of the most frightening journeys of their life.