Hormone Therapy

Hormone therapy is a term that we use to sort of represent a collection of medications that could – are going to act on the estrogen receptor and um the pathways that lie sort of downstream the estrogen receptor in terms of signaling the breast cancer cells to grow and to divide and to make more copies of themselves. You will sometimes also hear the term hormonal therapy, or endocrine therapy, or anti-estrogen therapy—they all kind of mean the same thing.

We have medications like tamoxifen that bind the estrogen receptor   and prevent estrogen from binding to it and turning on signals.  So, tamoxifen is an estrogen blocker. And then we have medications like Anastrozole, also known as Arimidex, Letrozole also known as Femara, Exemestane also known as Aromasin - because nothing can be complete without everything having two names -   which work by lowering total body estrogen levels but only function in – only work in post-menopausal women. Then there is a couple of other things that aren’t used as commonly   in the US, which I won’t mention   and a few medications that are largely used in the metastatic or – or palliative settings such as Fulvestrant, which down-regulates, sort of gets rid of the estrogen receptors. Those are all medications that belong to that hormone therapy class.  

Common side-effects of hormone therapy can vary from person to person. I think it is always important when we start a discussion about side-effects from any drug to acknowledge that these are possible side-effects and many patients and many survivors with breast cancer who are getting an anti-estrogen hormone therapy medication won’t really have much in the way of side-effects. I usually in my clinic quote to patients that roughly 50% will have no to mild side-effects, maybe another 20 or 30% will have mild to moderate and then there is of course unfortunately a 20 to 30% of patients who have moderate to severe side-effects.   But when we say moderate to severe side-effects with hormone or anti-estrogen medications, what we are typically talking about are things that just aren’t tolerable rather than things that are dangerous although there is a couple of exceptions which I can go over.   Common side-effects include the things that you might expect when you are interfering with estrogen right -- when you are messing with estrogen. So it is a lot of the menopausal side-effects. You can see things like hot flashes, changes in sex drive, vaginal dryness,   loss of bone density for some of the medications – although that can really depend on which one and whether someone is post or pre-menopausal.   You can see interestingly enough some joint aching, often a lot of hand and joint wrist pain, especially first thing in the morning or after someone has been sitting or seated for a while.   Really in terms of serious, potentially you know deadly side-effects from these medications, those are typically quite rare.   We rarely see blood clots as a result of Tamoxifen, we rarely see uterine cancers as a result of Tamoxifen.   You know, bone health wise   the Anastrozole, Letrozole, Exemestane, the Aromatisin can lower bone density. You can see fractures from osteoporosis   which can be quite serious but generally the medications are tolerated well.

Do you have enough risk that it is worthwhile taking these medications? And generally, because the risk is fairly low, we often have a – have a sort of approach of let’s at least try and see. We can always stop. There is very little that is not reversible in terms of the side-effects. If you are one of the unfortunate individuals who has quite a bit of trouble with the side-effects and you are struggling with it, then I think it becomes a discussion of is there enough risk that we want to stay on the medication? Because sometimes there isn’t. A DCIS patient, struggling with anti-estrogen hormone therapy – we might say sometimes to them you know stop, it is not worth what you are going through, the quality of life changes or impact. For an invasive breast cancer patient particularly one who has positive nodes, usually we are trying to figure out a way to make the side-effects manageable and for those individuals we would usually try to switch – so usually if you are on Aromasin change you to Anastrozole, we might switch to Letrozole, we might switch to Tamoxifen.   There are a series of strategies that are fairly well – well laid out on websites like Asko or NCCM or we have a list of options to consider often times just sort of chipping away at it instead of going step by step. It’s – it’s like chronic headaches or fatigues right. It is not a fast process, but we do often manage to arrive at a place where things are relatively reasonable for those patients.   Of course that is easier for me to say – I don’t – I am not the one stuck living with the side effects but   we usually manage – we usually manage.

So again, like, very lucky they've been minimal compared to a lot of the horror stories that I had beforehand, which, like, I think was also why I had that initial reaction. You know, I'm hot all of the time - so many hot flashes. I have to wear T-shirts in the middle of winter. But other than that, you know, everything's been really manageable. And again, that's another reason why I feel very, very lucky. You know, going back and getting the shot every month, you know it's not pleasant, but it's manageable. I should say that like now that I've been on this regimen for two years like, I'm handling it a lot better than I thought I was going to. You know, there's still challenges, but it's not like the death sentence that I thought it was going to be - no end of my social life or dating life or anything like that. So it is manageable.

I have to take tamoxifen, which is a, suppresses estrogen production, for five years. I started it about a week or two weeks after my radiation ended. And so, I've been taking it for a couple months. And, you know, just another pill so.

Have you seen any side effects from that?

I haven't. Apparently, ironically, they told me one of the potential side effects is hot flashes. And I said, “In men?” And they said, “Yes, men too.” But I have not had one.

I've been on aromatase inhibitors, which are drugs that stop the production of estrogen in your body. It sounds easy. It's not.   Your body craves estrogen and your body continues to make estrogen, but you're taking drugs that shut that estrogen production down. So, you'll notice changes, not as severe as what chemotherapy patients have, but I did lose hair and I did, my hair got very brittle and   you can't see it today, but my hair’s naturally curly, and so I got a lot more curls. It changed texture.  Your skin will change. You'll feel differently about yourself.     I have some times when my husband says it looks like PMS, but it's not. It's just your body without   estrogen. So, there's lots of side effects, but you learn how to   I say that I'm a master at managing side effects. It's what I do now.

But there's also a drug that I take every day. It's called Femara, if you've heard of that. And it is a hormone suppressant, and it has turned out to be what I call ‘Satan-sent’.

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It has not debilitated me, but it's come darn close to it. I'm in chronic pain now in my hips.

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So if there were any, you know, if someone were to say, “What is the worst thing about having cancer?” It would be the Femara that I am taking right now. It's not the surgeries, it's not the chemo treatments, it's not the learning of it, or the biopsies, or any of the stuff that led to it. Those were not great times, but this is every waking hour. So, this is the worst part so far. But because I want to be around for as long as I can. I have a rare, my gene is ATM gene, it's a rare gene, breast cancer gene. There's not a whole lot known about it. It increases my chances of pancreatic cancer. It also increases my chances of liver cancer. And then, of course, there's always the reoccurrence of breast cancer. So, and I know that if cancer comes back, it is going to come back with a vengeance. Well, statistically it will come back as a vengeance. I shouldn't say I know. So, I take this Femara to lessen my chances of all of that. And at this point in my life, it is worth it. Now if I were 80.

This was good advice I got in the beginning when I was diagnosed. And someone said, “Don't read all that horrible stuff on the internet about tamoxifen.” And I didn’t. I've never read anything about the side effects of tamoxifen. Because the bottom line is that I have to take it. So, I can sit there, read about it and fret and worry that I'm sick to my stomach today because I started tamoxifen. I can just say, “Eh, I'm getting older. That's why that hip hurts today.” Or that’s why. Because at the end of the day, it's not going to change. I have to take it, and I'm going to take it. So why fret and worry and stew about it? Or why just, you know, obsess about, “Oh, gosh, it's because of the tamoxifen.”

Because I had hormone-positive cancer, you know, the two main options are tamoxifen or, you know, Lupron and Aromasin. The team explained to me the difference between the two, you know, how essentially they work in your body. And then they didn't necessarily give me an option. My oncologist consulted with, you know, her counterparts, and I think ultimately they all decided, or they all agreed that because of my age, Lupron and Aromasin would be a better treatment. And we just skipped the tamoxifen altogether. And the strange thing was when they called and told me, you know this is the route we're going to go down, that was really when I fell apart. Which is so, it was not what I was expecting because, obviously, there were definitely emotional times through all of my surgeries and stuff. But for the most part, I could handle it because it was sort of like the next thing, just check the box. You'll get it done. It'll be done. And then when they told me about, like, the monthly injections. That was the part I was like, "Oh, crap." Now I have to go back every single month to do this. And when I asked how long, they said, you know, like at least five, but the longer, the better. So, I think that was just very daunting. It's like you're never going to get past this, kind of. It's just something that you'll have to revisit each month - for better or worse.

And there is a side effect for men that causes a lot of men to stop taking it. And that's ED, Erectile Dysfunction. And a lot of men will stop taking it. Personally, I wouldn't let that stop me because I don't want to have cancer. I really don't.

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I do have some of the side effects from the medication, the ED aspect of it. And a lot of men will stop taking it because of that. I'm not going to do it. But that's OK. That's something that my wife and I can deal with. It's only a temporary thing really because about another year and a half of it and then I'm going to be stopping it. So, it’s just-- you could call it a bump in the road. It's just one aspect that you manage it. And it's not forever. But it's never caused me to step away from anything or anybody. It doesn't really, you know, create a problem in my life because it's not a forever thing.

I had decided I wasn't going to do it. And some of my rationale for that was the fact that I was 70, coming up on my 71st birthday. And according to the research, those hormonal drugs, in some women it throws you right back into menopause. Well, damn, I already had menopause, and it was the pits! And I didn't want to back through that again. Who wants to relive that? Maybe if I was 40 or 45, I might want to think about this, but I didn't want to have to take more medicine to go into my body that we really don't know the outcome for and to push for what? Because the bottom line was—what I learned through this whole process is, there are no guarantees. There are absolutely no guarantees. So, what they give you is their best thinking. And you can make up your decision. And so, my decision was, “Hell, no, I'm not doing that.”

I even opened up the package. And it was once I read the insert that I decided not to take it   just because of all of the downsides.   My risk of breast cancer is now way below what it was prior to the mastectomy, and I didn't feel like the risk of the side effects from tamoxifen was worth it.

Dr. [NAME] told me early on when he, when he told me that he wanted me to take it, he said, some women cannot do this. So, the, the side effects get to the point that they just, he didn't use these words, but this is what I think he meant, quality versus quantity. It just gets to the point that you're willing to risk having the cancer come back because you're so uncomfortable with the side effects that, that the medicine is causing you, which, you know, kind of leads me to the thing. That's why I said I'm so excited about doctors possibly listening to this because I think it's important. I mean, I'm so very fortunate that my medical team shares these things with me, but I don't know that all doctors do that. And, and I think it's just important to know that, or for doctors to realize that what they are prescribing their patients for what they hope is a longer lifespan is causing them problems with the life that they're leading. And that doesn't necessarily mean that you should not prescribe it or that the patient would not want it. But it was nice for my doctor to tell me, you need to be paying attention to your body while you're taking this, because a lot of people have trouble with it.

A pretty big concern for me, and nobody had said anything about it, is that I had horrible joint pain the year following treatment. And it wasn't for an entire year that my radiologist, oddly enough, was asking me questions. And I had already been seeing an onco-, ah sorry, an orthopedics guy about my hips, thinking I needed a hip replacement. And he said “Yes.” And I said, “Ah, wait.” But it wasn't for another couple months that the radiologist was just, it was my final one-year follow-up with her. And she off-handedly said, “How's your joint pain?” And I said, “Awful.” And she said, “Well, that's a side effect of the anti-estrogen drugs.” Which I had no idea.

Tamoxifen, all the way around. I felt good, my bones benefitted from it, and then they came out with the aromatase inhibitor and they wanted me to switch because they felt it was better. And so, I switched and that’s when my bones got worse and I felt lousy. And so, I stayed on it for six or seven years and I ended up switching oncologists because the person I was seeing wouldn’t let me come off of it and I said I am not going to stay on this. And, you know, I’ve been out ten years. I was feeling pretty confident. And he’s like ‘no, blah blah blah blah blah, statistics are’ and I finally switched oncologists who said ‘I think it’s perfectly reasonable for you to come off the aromatase inhibitors and go back on Tamoxifen. So, I did.

I couldn't function the next day, I mean, I was exhausted. I'm like, “Nope, my quality of life is worth more than blocking estrogen in this way. So, I'm not taking tamoxifen.”

One thing that went through my head besides the panic is something to the effect of, ‘Oh crap, and then, what matters to me? What is it that I need to keep in my life through all of this?’ I'm like, “All right. I need to, you know what? I want physical and mental function, and I do not want pain. I am not willing to be in pain every day.”

My quality of life on a day-to-day basis is worth much, much more to me than my survival. And if my quality of life is crap, then I don't want to live. And, you know, my husband had a hard time hearing that. But I'm like, “Would you want me to be in pain every day?” and he's like, “No.” Well, I can't take these drugs then, because I can't risk them.

I think it definitely affects your libido, and that's problematic for your relationships, and for your--you know, I'm married. So that's definitely an issue.

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I went to a workshop that talked about sexuality and cancer and that, and there was some good information. Honestly, I found some of that just some of the things that you needed to do just didn't really work into a busy lifestyle. It just is like when you have work and kids and financial concerns, and it's hard to carve out that time for that. And that's unfortunate, and that's really hard, and it's hard on a relationship, for sure.

Yeah, I think   going through menopause, and then, like I said, being on letrozole, which is pulling even more estrogen out of me, you know just I've completely— I think my relationship to my body has had to be completely renegotiated.   My desire is completely different. It's much more subdued. Like, the ways in which I feel in my body are completely different. It just takes more work to be in my body these days, on multiple levels. And, like I was saying in another part of the interview that, after my spine surgery, I basically went into strength training.
Like, I am at my all-time highest weight right now, which is like, as a thing in itself is not an issue, but cancer has dramatically shifted the way that my body is. I am about 70 pounds heavier
than I was when I was first diagnosed   as metastatic. I know some patients lose weight. I just happened to gain weight, you know.  And some of that might have been— just because of the intensity of the surgery, I was on steroids and other things that helped me to manage pain and all of that. And also just, who knows? So just being in a body that is   a little bit softer now, I think I felt most in myself when I was a little bit more angular and a bit more-- like I used to put on muscle really easily.  Well, estrogen also helps to build muscle. So it is just, this is just a very different body than I had when I was first diagnosed. And I'm trying to love this body, but it's also a body that like, you know-- it's still one that I'm trying to really embrace, to be honest, in terms of like, I realize like my body is doing the very best that it can, or even just calling my body separate from myself. But it's like, there had to be a lot of negotiations to kind of like feel at home in my body, and that the gender piece is really complicated in terms of, like I said, I actually felt really in myself when I was a cis-identified woman.   I had a much more femme presentation for a lot of my life.  I think when I started to change shape too. And then, I mean, hormones are so powerful, like you know. And this goes for anyone who has transitioned on hormones or people who have gone through menopause, or what have you. Hormones are so powerful. And so I guess all I can say is that like, hormones have had a dramatic effect on how I feel about myself, how I feel in myself.