Why I took a break from hormone therapy

I often get asked why I stopped hormone therapy. Why I would stop taking something that could potentially be saving my life. And there are times I feel guilty for it. Knowing I have this option out there and feeling like it may be viewed as being careless. It’s hard to even write this and put it into words that won’t come across the wrong way. To not sound ungrateful. But lately I’ve had to get really honest with myself about how my quality of life is. I don’t remember the last time I had a good sleep. I don’t remember the last time I woke up feeling rested. And I don’t remember what it was like to have the energy to get through each day. It’s been so long since I’ve felt “normal” that I don’t even know what normal feels like anymore.

For the last 2.5 years, I’ve been on hormone therapy medications: a combination of an ovarian suppressor, Zoladex, and an Aromatase Inhibitor, Exemestane (aka Aromasin) to reduce my risk of recurrence. Although my oncologist had sat down with me after chemo and radiation had ended to talk about the next course of treatment, I was given three different options: Tamoxifen alone, Tamoxifen and Zoladex, or Exemestane and Zoladex. Pick your poison. Because the TEXT and SOFT trials had indicated that the best course of treatment for high risk premenopausal women including those with positive lymph node involvement was to take an AI plus ovarian suppressor, I chose to take the Exemestane and Zoladex route (*note: update on the studies here.) It was the best of the best as my oncologist put it but also the worst of the worst in terms of side effects. I wanted my hands on anything that would give me a better chance at long term survival though even if it meant being thrown into menopause at 34 years old.

But over the last few years, I’ve been really struggling. Insomnia that keeps me awake at all hours of the night. The fatigue that hovers over me like a dark cloud all day. Finding the energy to get out of bed sometimes. Hot flashes that come out of nowhere. The bone and joint pain. The lack of sex drive. The vaginal dryness. The list goes on. I spent so much time trying everything under the sun to offset the side effects from doing acupuncture to physio to meditation, yoga, natural sleep aids, Chinese medicine, searching for the sweet spot of relief to no avail. Add to that returning to work full-time 9 months ago, and I began feeling like I was on a crash course to complete burn out 101.

At every appointment with my GP Oncologist, she would ask me the same thing: How are things going for you? Are you managing okay? Do you need a break? I kept telling myself that I could tough it out a few more months, I need to push myself more, exercise more, meditate more, and found myself giving the same answer over and over: I’m struggling with (insert long list of side effects here) BUT I really want to keep going and give things a good shot. Looking back though, I wonder if I was just in complete denial of how badly this was all really affecting me. But as months went on, and the stress of work, life and managing the side effects began to snowball, I finally had to get real with myself on how I was really doing.

As I went in to see my GP Oncologist for my Zoladex injection, graduating from one month to every three months, I finally got the nerve to lay it all out on the table. I was nervous going in worrying about how my body would react to a new shot, but more importantly I was nervous about opening up to my doctor and letting her know how things were really going for me. Even as I sat in the office telling my doctor all of this, those thoughts kept creeping back up in my head though questioning myself saying “have you really done enough?” “Is it really that bad?” Why am I my own worst critic?

It wasn’t until she reminded me that I would likely be on hormone therapy for another 7.5 years and could see things were really slipping that it all hit me. I had spent so much time fighting and feeling like a could work harder to get through this that I stopped focusing on my quality of life. I was more focused on living up to this expectation of being strong and not wanting to admit that I was struggling because somehow that would make me seem weak or worse yet, ungrateful. But frankly I was exhausted floating through my days existing rather than living.

Three weeks later, I was sitting in my Medical Oncologist’s office feeling like a crumbled mess coming to terms with the fact that I had reached my breaking point. I was struggling with the feeling that I had somehow failed myself on top of dealing with bone pain that had sent me in a spiral down the deep dark rabbit hole of what ifs. It was a lot going on. Talk about bone scans, about PTSD, about my long-term survivorship. The thing I love about my Oncologist though from day one is that he doesn’t try to dumb any of the information down or sugar coat anything. He just gives it to me straight up and always comes into the appointment with copies of research studies and information to back it up.

We talked about my options again: trying Tamoxifen alone, trying Tamoxifen with Zoladex, or switching to another AI. My Oncologist suggested I take a mini holiday from the daily Exemestane to see if we could rule out whether that was the root cause of some of my problems. And I felt this huge sense of relief having him suggest it versus me having that conversation that I feel every doctor cringes at. You seriously want to stop your meds?! Although the thought of going off of one of my meds terrified me, I needed a change. And my oncologist assured me that because I had just gotten my 3 month Zoladex injection, I was still somewhat protected.

But what initially was supposed to be a 3 week holiday, turned into 2 months. I struggled deciding what my next move was going to be. Do I try something different altogether? Do I go off everything altogether? Or do I just “suck it up” and go back on the same medication? Although I felt like my fatigue and brain fog had slightly improved, the hot flashes surprisingly got worse with the other side effects remaining status quo. I also recently cut down my hours at work and had a hard time deciphering whether those were more attributable to that or the break from the meds. I was hopeful I would expect more relief but ultimately at my recent follow up with my Oncologist, he said it was likely that most of the things I was struggling with was due to the fact that I was now in menopause.

As my next Zoladex injection appointment creeps up tomorrow, I still find myself debating what to do. The ticking of the clock with each day I remain off. The fear of recurrence very real for anyone who’s been through a cancer diagnosis. Being on hormone therapy is like an added security blanket. Potentially giving me hope for another few years. It’s just one that you’re not really sure how securely fastened around you it is. That’s the thing with being a young woman with breast cancer. The lack of research. The lack of certainty. Not being given the data and instead being the data.

So, while I gave Exemestane a good run, I think I’m ultimately leaning towards the fact that it’s worth exploring other options to see if I can find the right balance that works for me (with hopefully less side effects). Hoping that eventually my quality of life will improve. Because life to me these days is meant to be lived.

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