(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.

Balancing Side Effects vs. Quality of Life

“Remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects.”

I can’t tell you how many times I’ve read that statement on the informational leaflets from various bottles prescribed for me. When it comes to a disease like cancer, it might as well say, “You think these side effects are bad? Hohoho, just try not taking your meds!”

This does not give warm, fuzzy feelings of hope. Then again, there’s not much about cancer that’s warm and fuzzy.

It can feel like the treatment is as bad as the disease.

I, admittedly, am generally accepting of the advice given by knowledgeable professionals. When my oncologist laid out a treatment plan, I didn’t argue, although when offered a choice between an effective targeted therapy versus an even more effective but also more toxic one, I opted for lower toxicity.

For me, it was a quality of life issue. If I’m “cured” of cancer but end up with severe heart problems…well, I’d rather take my chances with a less damaging option.

Cancer still remains life-threatening, now as it did decades ago. The difference is that patients are living longer and some go completely into remission. Survivorship should be considered a factor when designing a treatment plan, as should long-lasting repercussions of side effects.

So if I had one request of oncological health teams, it would be that they look beyond simply bombarding the cancer and consider the physical and mental condition in which they leave the patient, being sensitive to the possibility of ‘overtreatment’ in their exuberance to squash as much of the disease as possible.

Should you use a sledgehammer when a rubber mallet might be sufficient? Is “just to be sure” a justification for side effects than can compromise your quality of life, however long that is?

It’s not always easy to find that sweet spot between acceptable risk and tolerable side effects.

There is no “right” answer to this as everyone’s situation and risk tolerances are different. So if I could have a second request of the medical community, family and friends of the patient, it would be that they respect the limits and decisions of the one who’s going through this.

To be able to weigh the risks and decide what’s acceptable and where to draw the line — that might offer at least a semblance of control in the crazy roller-coaster ride that is cancer.

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.

Between the Past and Future: A Cancer Survivor’s Perspective

I attended a workshop on cancer and stress given by the social workers at my cancer center. Since I like to take advantage of every opportunity to explore what’s going on inside my noggin I was looking forward to the presentation, but I didn’t realize that I would be offered a curious vantage point at the same time.

Sitting in the front row as I always do, I was joined by a woman who was awaiting the results of her second breast tumor biopsy; her first had confirmed cancer but another tumor was discovered shortly thereafter.

She told me about her racing thoughts, lack of appetite, inability to sleep — all those symptoms of intense stress that I also experienced as I awaited diagnosis. How odd it was to revisit this through her, now that I had a comfortable seat on the other side of that experience.

I commiserated with her, briefly offering up my own experience, and assured her that some of the anxiety would mellow once she had a definitive diagnosis and accompanying treatment plan. That’s the only thing I assured her of, knowing the nature of cancer, but I hope it gave her comfort seeing how far I’d already made it on the cancer journey.

And then, ironically, I realized that the woman sitting directly behind me was someone I had sat next to during one of my chemo infusions in 2017. I re-introduced myself, and while she didn’t remember me, she said she’d been through so many chemo sessions that it was hard to differentiate one from the other.

When I met her in 2017, she had hair and a good dose of energy. We talked about our kids (hers were grown) among other things. She was being treated for lung cancer but we didn’t dwell on the particulars. That’s not generally what you talk about during chemo. You gravitate towards non-cancer topics.

Things don’t always turn out the way we predict they will.

But now, she wore a ball cap to cover her bare head and walked with a cane. She seemed frail and was accompanied by a caregiver — several years of cancer treatment, not to mention the cancer itself, will do that to you. I’m not sure what her prognosis was, but given what I knew about her and the fact that she was still doing chemo, it probably wasn’t favorable.

There I sat, trying to stay present, next to my past and in front of my potential future. I had the good fortune of surviving the one and a decent chance of escaping the other.

There is no crystal ball with which we can gauge the future, deciding whether or not we like it, and if not, opting out. So here’s to making the best of the time that we have.

Passing Days One Pill at a Time

I have beside my bed a 7-day pillbox. Since I avoid taking pills whenever possible, opting for alternatives to medication, there is only one lonely but mandatory pill in each little box corresponding to the day of the week.

That’s tamoxifen, a final remnant of breast cancer treatment that I’ll be taking for years to come.

I observe the passage of time by the disappearance of the daily pills. They mark the days that I work and the days that I don’t (weekends and Wednesdays). Sunday mornings the pillbox is full. The work week looms before us bringing early mornings and sleepy heads. Wednesday provides a brief respite with an extra hour of sleep and a day crammed with personal errands at home rather than office work. When Thursday rolls around and I return to my job, only the Friday and Saturday pills are left until it’s time to refill the box again.

Days melt into weeks, weeks into months. Make them count.

The weeks seem to go by more quickly as I get older. Time feels slippery and days fuzz into the background. Weeks pass into months as pills are consumed. I’m unsettled by the possibility that when my decade of tamoxifen ends, I’ll realize that I spent ten years waiting the pills to finish and missing what was going on in the moment. It frightens me into wanting to distinguish this week’s row of pills from the next, to make next week different from the last.

I pause as I plop a fresh row of pills into their designated boxes. Could I be kinder to those around me? React more calmly? Sleep better? Support the needs of others more? View my shortfalls with compassion?

Every morning I am able to get out of bed and place my feet flat on the Earth. That is something to be very grateful for, no matter how difficult my week. I represent the fortunate ones who have been given the opportunity to remain alive and present in “now” and appreciate every precious day more than the one before.

Another Hairy Situation

It wasn’t until almost a year and a half after my last chemo that I finally got a professional, high-caliber haircut. After an adult life filled with boring medium-to-long hair in a ponytail, this was an about-face: a short and very stylish ‘do.

I don’t think I would have ventured to try this if I hadn’t been pushed into it by chemo. Then again, cancer pushed all my boundaries further than I would have gone on my own. I’ve always played it safe, but with cancer, there was no “safe”.

When chemo took my hair, I had no say in it. As the hair grew back, it did so slowly and in a pattern that was not attractive. Nothing I could do about it but be patient.

Front shot of my awesome new pixie cut! The hair on top is full and feels thick. I love the look!
Back view. This was the part of my head that unnerved me in the middle of the night. It felt so bare and brought back all sorts of scary feelings.

But in 2019, I was in charge and could decide at what length I wanted to keep my hair. I’d been surprised by how much I liked the new “me” with a short style, so I thought I’d be adventurous and go even shorter. My hairstylist happily obliged and this past week I got a full-on pixie cut that was absolutely adorable. It felt great to be calling the shots and reclaiming myself and my look.

But something unexpected happened that night. I woke in the darkness, unsettled with a touch of panic. My head felt bare, like my hair had crossed the threshold between short and “omigodthatisTOOshort”. For a split second, everything felt out of control again.

It took a bit to calm myself down in the pre-dawn hours of the day. I had wanted to be brave and cut my hair shorter, but it elicited those old feelings of the unknown. Wait, I reminded myself, all of this was “known” now. I knew my hair would grow back again. Add to that, several days before, I’d had a mammogram that confirmed I was in remission. So there was no need for the fears.

Be that as it may, it wasn’t so simple to let the feelings go. My hair carried powerful associations that had been seared into my unconscious mind. Losing locks to chemo meant relinquishing a part of me. While I thought I already understood its importance — I’ve written about it in a number of posts — it wasn’t until that night that I realized how tightly my hair was wound up in all those memories and sensations.

You’d think that once the hair grew in, everything would return to normal and there’d be nothing more to say about it. Not so, I’m finding, as I get hit in the face by these unexpected reminders of exactly what having cancer meant to me. Sorting everything out seems to get more complicated the further away I get from treatment. Who knew survivorship could be such a head trip?

About That Boob Job…

Not gonna happen.

The funny thing about telling people that you have breast cancer: their eyes always seem to glance down at your chest, as if they’re thinking, “Wait, are those real?”

Our society puts a lot of value on breasts, way more than just as vehicles for nourishing our young. As a dedicated breastfeeder of two children, I was surprised by how many women admitted to me that they wouldn’t breastfeed because they didn’t want their breasts to sag.

There’s also this weird assumption that a woman will jump at the chance to “improve” her breasts; in the case of a breast cancer patient, hey, congratulations, you get “free” implants! YAY! After I related my diagnosis to a male friend, he noted that finally my husband would get the C-cups that he’s always dreamed of.

Stop. Go back and re-read that last sentence. It was my breast cancer, but my husband would “benefit” from it too. Yay.

“Bummer about your cancer diagnosis, but at least you’ll get a nice pair out of it.”

If you’ve read about my breast cancer experience, you’ll know that a mastectomy was unnecessary because my tumor was small enough to require only a lumpectomy. My recovery from surgery was short — I was back to work the following week.

However, my insurance would have covered removing far more breast along with reconstruction. None of this, as far as I’m concerned, would have been medically justifiable, but there was the expectation that breast cancer equals boob job, even when studies have shown that survival outcomes are not improved by complete removal of the breast when only a lumpectomy is indicated (for example, Fisher et al., 2002), and there are far more complications that can arise from the multiple surgeries necessary for reconstruction.

This, of course, was my personal preference. To be fair, I know a number of breast cancer survivors who had no other option than a radical mastectomy. That in itself is traumatic, so it’s perfectly understandable why they would want reconstruction in an effort to regain whatever normality they could. As I wrote in Body Image, Part 1, like it or not, breasts do define us as women. You can argue whether or not that sets women’s rights back (“I am not my breasts”) but I feel that when it comes to cancer, all bets are off. Breast cancer survivors deserve a lot of leeway in making decisions about whether or not to reconstruct.

Those who do choose reconstruction may still have a host of other issues that they have to contend with (see the Healthline article: “No One Talks About the Emotional Side of Breast Reconstruction”). So it’s not all wine and roses and Double-Ds.

I didn’t need a complete mastectomy and thereby did not augment my tiny breasts even though I could have. For me, this was not a matter of “looking better” or “taking advantage” of the situation the way others suggested I should. It was about maintaining the greatest degree of normality, getting though the experience and trying to get on with life.