How I’m Navigating Breast Cancer Treatment Decisions 5 Years Later

Making decisions once you reach the 5-year mark on hormone-blocking therapy can leave you feeling conflicted, but remember that you’re in the driver’s seat.

Reaching the 5-year mark as a breast cancer survivor is something of a milestone. It’s the checkpoint at which your risk of recurrence begins to diminish significantly.

For breast cancer survivors on hormone-blocking therapy, though, the 5-year mark can be a confusing time filled with uncomfortable decisions.

When I passed the 5-year mark since my triple-positive breast cancer diagnosis, I felt invigorated. But the decisions that have unfolded as I now approach 5 years of hormone-blocking therapy have left me conflicted.

I was diagnosed with triple-positive breast cancer at age 27 in 2015. I had recently gotten married and was trying to get pregnant at the time, so the first thing on my mind when entering treatment was how to best preserve my fertility. The only thing I dreamed of was becoming a mother, but it felt like that dream was suddenly uncertain.

My hormone-blocking therapy continued for many years after chemotherapy, and I longed for the day I could go off my medication and try to have a baby. My oncologist recommended I wait as close to the 5-year mark as I could handle to give me a lower risk of recurrence.

After 2.5 years of taking hormone-blocking therapy, my husband and I decided it was time. I was given the go-ahead by my oncologist to take a break from the medication to try to have a baby.

It took me almost the full 2-year break to get pregnant with my miracle son after multiple losses. I quickly returned to my hormone-blocking medication right after his birth, feeling anxious about the risk of recurrence.

In the years that would follow, I was angry at my medicine. After a glimpse of the pleasure found in life off the medication, it was hard to readjust to the side effects. When you’re on medication to save your life and extend your time on this Earth, there is a love-hate relationship to navigate.

I am grateful for the power of science to reduce my risk, but I am angry that I have to live a life filled with daily side effects — vaginal dryness, hot flashes, painful intercourse, and bones and joints that feel like I am over 60 years old.

Despite my 2-year delay due to trying to conceive, I am now approaching 5 years of cumulative hormone-blocking therapy, and I am in the position to decide how I will proceed for the coming years of my life.

So, how on Earth do I decide what to do as I balance quality of life with my desire to reduce my risk of recurrence and be here with my son and husband for many years to come?

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Turn to research

The current research for hormone-blocking therapy hasn’t changed in many years and still indicates that 5 to 10 years is the desired time frame to be on the medication.

Unfortunately, there aren’t many studies to indicate the exact benefit of 10 years versus 5 years. As a survivor, 5 years of additional hormone-blocking medication is a long time to manage.

I dream of the day we have more specificity in the research to give us confidence in shorter-term medication or a more refined plan based on each of our unique treatments, ages, and diagnoses.

For now, the decision of how long to stay on hormone-blocking therapy should be a conversation between you and your oncologist, as it depends on your risk of recurrence and how well your body tolerates the medication.

Reexamine your risk rate

I recently discovered the Breast Cancer Index test, and while it may not be valid for everyone, it’s a way to gain additional insight into your added benefit of continued hormone-blocking therapy.

For those with HER2-negative breast cancer, you can also look at the Oncotype DX Breast Recurrence Score test to revisit your unique recurrence rate and use that as an additional data point for your hormone-blocking therapy decisions.

When making my decision, I want to be mindful of my particular risk rate and what the continuation of medication will mean in terms of percentages. The differences may seem minor, but they can make a huge difference.

Reflect on your quality of life

While this one isn’t super scientific, it’s very important. Think about the following:

• What is your quality of life?
• Are you experiencing depression?
• Are your side effects limiting your ability to complete daily activities and interact with loved ones?
• Are the side effects straining your relationship with your partner?

My side effects are manageable, but they do diminish my sexual wellness, and I miss how I felt off the medication. At the end of the day, I will have to weigh my quality of life with the medical metrics related to the medication.

Check your bone density

One of the well-known side effects of aromatase inhibitors (such as the letrozole I am on) is diminishing bone density.

When considering which hormone-blocking therapy decision is right for me after 5 years, I want to know if my medications have caused negative impacts on my bones thus far.

I’m currently experiencing pre-osteopenia, and if my test this year shows an increase, that may lead to a decision to switch medications or take another route of risk reduction.

Explore your options

It’s important to know your options. You can have this conversation with your oncologist, but it can also help to talk with other survivors.

While no two breast cancer diagnoses and cases are the same, it can help to hear from others about the decisions they made and the factors that went into them. Make sure to take all advice with a grain of salt, and do your own research on any options you hear.

Some people choose to stop all hormone-blocking therapy at the 5-year mark, which is a very personal decision and one not supported by most oncologists. Another option is to take a short break to determine how you feel off the medication and then determine the next steps.

In cases like mine where I’ve been on the same medications (Lupron and letrozole) for many years, there is also the option to switch to a drug like tamoxifen. It provides the same type of protection but works in the body differently and would thus produce a different set of side effects. Improving my sexual health side effects is the most important part for me right now.

The bottom line

I have about 8 months to collect and consider all of these data points in order to make the decision that is best for me when I hit that 5-year cumulative hormone therapy mark next year. Whatever I decide, I know I have to be in the driver’s seat of that decision, just like I was in all the former stages of my treatment.

While research and my life have evolved in the past 5 years, one thing has not: Decisions are never easy. As you navigate your own decisions in the long term after cancer, know that you are in the power seat.

There is no one right answer or path that will work for everyone — it’s a constant balance of finding your happy place of protection and a quality of life you can love.