Hi-Ho, Hi-Ho, On Letrozole We Go

Starting up again…

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

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

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

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

You know what? I’m not so sure now.

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

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

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

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

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

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

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

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

What No One Told Me About Cancer and Hair Regrowth

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

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

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

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

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

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

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

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

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

My reward for enduring cancer is invisible hair.

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

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

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

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

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

“Don’t Drink the Water and Don’t Breathe the Air”: A List of Breast Cancer Risk Factors

After some intense research on the risk of developing breast cancer, I’ve come to the conclusion that the factor with the greatest causal relationship to the disease is, quite frankly, life. In fact, I sometimes wonder how people manage to NOT get cancer.

For your reading pleasure, I surveyed a number of reputable sites to compile a list of commonly accepted breast cancer risk factors (links to the info): American Cancer Society, Mayo Clinic, Memorial Sloan Kettering Cancer Center, Dana Farber Cancer Institute, Centers for Disease Control, National Breast Cancer Foundation, World Cancer Research Fund and WebMD. There are some emerging risks that most sites didn’t list and although I have seen the research studies in support of those factors, I opted to exclude specifics for now. Perhaps that’s for a future post.

Here you go, not in exact order of importance:

  1. Being born female (well that covers about 50% of us)
  2. Getting older (um, inevitable…)
  3. Drinking alcohol (even moderate drinking has been shown to be harmful – find a different hobby)
  4. BRCA1 and BRCA2 gene mutations, which everyone talks about, but certain mutations in the following may also increase cancer risk, although to a lesser extent: ATM, TP53, CHEK2, PTEN, CDH1, STK11, PALB2
  5. Personal history of breast cancer (get it once and you’re a moving target)
  6. Family history of breast cancer (including both close and distant relatives)
  7. Personal history of breast lesions (even stuff that seemed benign-ish)
  8. Radiation exposure, specifically to the face and chest, before the age of 30
  9. Obesity (but mainly for postmenopausal women, see here; it’s complicated)
  10. Having dense breasts (sometimes this is considered a top risk factor)
  11. Beginning your period before age 12
  12. Going through menopause after age 55
  13. Having your first child after age 30
  14. Never having kids (remember that when you’re paying for their college)
  15. Taking hormone replacement therapy (HRT)
  16. Certain hormonal birth control methods
  17. Family history of ovarian cancer, especially before age 50.
  18. Being white (at least in the U.S., although the rates of African-American women are catching up, often with a worse prognosis)
  19. Having received diethylstilbestrol (DES) to prevent miscarriage, given either to you or your mother
  20. Being inactive (honestly, exercise is critical – don’t overthink it – MOVE!)
  21. Not breastfeeding (not only does nursing lower your risk, if you do get breast cancer, you’re less likely to get the aggressive triple-negative type)
  22. Being taller (this may have to do with faster growth at an early age)
  23. Doing night shift work (this may affect your hormone patterns, not to mention make you cranky during the day)
  24. Smoking (the evidence for this has been deemed “suggestive, but not sufficient”, but inhaling smoke sounds like a bad idea regardless)
  25. Exposure to cancer-causing chemicals (that’s, like, just about everything out there, and the connection remains unclear)
  26. Diet choices (this is unclear, although there have been some links drawn to both macronutrient proportions and some vitamins, but more research must be done)
Oh, for the day when we can be guaranteed that what we’re doing is helping (or hurting) us!

In a word, we really don’t know, but living a healthy lifestyle gives you the best chance for survival.

Finally, the things that seem to have no reasonable link (per WebMD and echoed on other sites):

  1. Antiperspirant (no need to stink)
  2. Bras, underwire and regular (feel free to support yourself)
  3. Abortion or miscarriage
  4. Fibrocystic breast changes
  5. Multiple pregnancies
  6. Coffee/caffeine (raise your mug in celebration!)
  7. Hair dye (unless it’s really radioactive, but come on, that would be silly)

Judging from the above info, it can feel like cancer is waiting around the corner to pounce on the next unsuspecting victim that wanders by. I thought I had ZERO risk factors, but I can easily pick out several there. At the same time, I know people who seem like they’d have a gazillion risk factors and they never get zapped. So.not.fair. But that’s cancer for you.

And the more we find out about the disease, the more we see how complex it is. We are all different, reflected by our DNA, so it’s not out of the question that we might be affected in unique ways by these risk factors. Research is uncovering new connections all the time, and it may be that in order to find a cure for cancer, we’re going to have to look at the disease in ways that we never have.

Pre- vs. Postmenopausal Breast Cancer Risk: There’s a Difference, But Does It Matter?

You’ve probably seen those plastic breast self-exam cards you hang on your showerhead as a reminder to feel for lumps on a monthly basis. I have one myself, and would read it over and over when I was trying to decide whether my lump was worrisome, reviewing the “reduce your risk” tips the card offered.

However, there are two points that I wasn’t aware of at the time that I was diagnosed: (1) we know little about causal factors, as most studies that examine risk are only correlational; and (2) there’s a difference between being premenopausal vs. postmenopausal when talking about breast cancer.

Okay, there’s a third one too: (3) risk factors don’t mean squat when I’m talking about my personal diagnosis.

First, a well-known fact: postmenopausal women make up the majority (approximately 2/3) of these cancer cases, so it’s not surprising that the focus is on them.

I, however, was premenopausal when I felt the lump in my left breast.

Imagine my surprise, then, when I learned that while being overweight or obese is a significant risk factor for postmenopausal women, being overweight as a premenopausal woman seems to offer protection against the disease. Whereas I thought I didn’t have any risk factors for breast cancer, as suggested by that plastic card in my shower, perhaps I did.

There’s not much talk about that protective element of weight for premenopausal women. You would be hard-pressed to find a popular website that mentions it. And no doctor would encourage a premenopausal woman to carry extra weight on the off chance that it might lower her risk of breast cancer; it’s too much of a liability for other health issues, including other cancers.

This explains why, if you’ve gone to a gathering of newly-diagnosed breast cancer patients, you’ll see some younger, remarkably fit women looking a little dazed and wondering what they’re doing there.

The weight risk factor is often posed in the following way (from the Mayo Clinic site): “Overweight and obese women have a higher risk of being diagnosed with breast cancer compared to women who maintain a healthy weight, especially after menopause.” Well, that’s not wrong, but it doesn’t tell the entire story.

Harvard Health Online puts it differently, with a caveat: “Being overweight or obese has been linked to breast cancer risk, especially for women after menopause, but the relationship is complicated. It may be that risk is increased in women who gain weight in adulthood but not in those who’ve been overweight since childhood.” That seems even more confusing and less reassuring.

It’s true that everything about cancer is complicated. If it were straightforward, we would have found a cure by now. Furthermore, when it comes to guidelines to follow, people don’t want details, they want sound bites. But simplification cuts out information. For example, this CDC webpage about what you can do to lower your breast cancer risk posts recommendations geared for older women, including maintaining a “healthy weight”, but the photo that’s shown is clearly of two younger women.

Even a cursory glance at the research reveals what a difference menopausal status makes. In addition to extra weight seeming to have a protective effect in premenopausal women (Cold et al., 1998, Eur J Cancer; Lahmann et al., 2004, Int J Cancer), it’s also been determined that greater red meat consumption in adolescence is significantly associated with increased risk of breast cancer in premenopausal women (Farvid et al., 2015, Int J Cancer). Interestingly, higher quality diets have a more beneficial effect on the risk of postmenopausal women and seemingly no effect on premenopausal ones (Haridass et al., 2018, J Nutr). I would expect that a more exhaustive search would yield even greater differences.

Live as if your life depends on it.

So what does this tell us? This is less about the specific differences between pre- and postmenopausal breast cancer risk, and more that there simply is a difference. At this point in our knowledge, we are still putting together pieces of the cancer puzzle.

Additionally, many studies that offer preventative guidelines are based on other studies–they may be meta-analyses of previously collected data from a broad range of subjects. The data may be self-reported, which may result in recall error. And when you have a sample size of ~30,000 women, you’re talking about general risks for populations, not a specific risk for a specific, and very unique, individual: you.

All this sounds exasperating, but one concept holds true: no matter what your risks, the healthier you are before you’re diagnosed with cancer, the better your outcome compared to someone with less healthful habits, should you get the disease. Instead of obsessing about possible risk factors, give yourself the respect you deserve–put the effort into improving lifestyle habits to grant yourself the best chance for survival. In the end, that’s what matters.

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

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

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

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

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

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

Conveniently, my oncologist appointment was in three days.

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

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

No more tamoxifen? Yeah, I feel like celebrating.

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

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

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

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

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

A Year and a 1/2 with Tamoxifen: Collateral Damage

For those unfamiliar with the drug tamoxifen, its purpose is to block estradiol receptors in an effort to decrease the chances of developing hormone receptor positive breast cancer. My own tumor had been estrogen and progesterone receptor positive, so tamoxifen is pretty much standard fare for women in my situation.

The trick is, however, to make sure women keep taking the medication, and the side effects may make that a challenge. The current recommendation for pre-menopausal women with hormone receptor positive cancer is ten years of tamoxifen. When I posted after a year of taking tamoxifen, I was experiencing minor side effects but had managed to avoid the worst hot flashes and night sweats that many women complain of. And even the side effects I had I couldn’t completely pin on the drug.

After a year and a half of tamoxifen, the landscape has changed. My estradiol level, which was 36 pg/mL when I started in November 2017, has dropped to 22 pg/mL. I’m still not having a significant problem with body temperature regulation, although this may change with the summer months.

There are, however, other distressing issues that are becoming increasingly problematic:

1. Memory lapses. I’ve written about this in a number of other posts, but it deserves mention again because it’s not getting any better. I struggle with distractability and loss of focus, which compromise my ability to do my current job. There are details that I simply miss, and I have a hard time juggling things in my head. Yes, I write everything down and follow my own advice, but there are days that I want to give up and go home.

Bottom line, even with workarounds, my concentration makes me ineffective at times. That alone could be a deciding factor in how long I will last on this medication, but it’s not the only one.

2. Fatigue. This has become more noticeable and is affecting my workouts. I feel like I’m losing ground on my fitness. While I’m no stranger to working out even when I don’t feel like it, there are days that I feel beat before I begin, and like I’ve been run over by a truck by the time I’m done. Exercise is such a crucial part of recovery and good health — and a very important part of my life — that it seems ridiculous that my treatment should be getting in the way of it!

Detachment from affection feels lonely and isolating.

3. Loss of libido and emotional attachment. This would be easier to take if I were single and living alone, but dealing with this side effect in the context of a relationship is getting progressively more difficult. It is not simply romantic desire that has dwindled; feelings of affection for my husband and children have dulled. I know I love them and feel a strong sense of responsibility for them, but there’s a numbness where there used to be warm emotions. It breaks my heart because I don’t want to feel this way.

4. Depression/mood swings. On the plus side, I know what’s going on and am actively working with my counselor on dealing with these fluctuations, but these are side effects of the drug, so as long as I’m taking it, I feel like I’m trying to bail water out of a sinking boat with a spoon.

5. Argh, again with the hair! After regrowing my hair following chemo, it has been thinning from tamoxifen. This may seem insignificant in the grand scheme of things, but if you’ve ever lost your hair to cancer treatment, you know that it can be a emotional experience. Getting your hair back is a big deal, but thinning hair brings back a sense of helplessness and lack of control.

Notice that the effects above are not readily apparent — even the thinning hair might not be as noticeable to an observer as it is to me. It’s easier to understand visible health-related consequences, but we as a society have a hard time getting our head around (or expressing concern for) the importance and impact that emotional factors have on quality of life. You can’t see my concentration difficulties or depressive mood or grief over numbed affection, but they affect me as strongly as do any physical symptoms.

I’m not forgetting how lucky I am.

This is a good place to stop and mention gratitude. The fact that I write this post as a former cancer patient on a maintenance drug to help keep my cancer from re-occurring…that is a privilege. My good fortune is not lost on me, and it is something I think about every single day. We have come a long way in treating my type of breast cancer and I am the beneficiary of those advances.

But there is also an expectation that now that chemo and radiation are done and my scans are clean, I should be “back to normal”. I would like nothing more than that, but I’m not there.

This brings me to a deal I made with myself: I promise to do my utmost to last through five years of tamoxifen. However, years 6-10 remain to be seen. At some point, the scales will tip and quality of life will win out over whatever purported percentage of increased survivorship the full decade of the drug can offer me. This offers me some strength to push on and focus on the present, doing the best I can with what I have.

Cancer’s No Big Deal…Except That It Is

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.

Except when I’m not.