Postmenopausal – Frantic Shanti

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.

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?

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.

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.