Refusing Hormonal Therapy for Breast Cancer: What You Need to Know
If you’ve been diagnosed with hormone receptor-positive breast cancer, it’s likely that your doctor recommended that you take some type of hormonal therapy medicine — such as tamoxifen or an aromatase inhibitor — after surgery for five to 10 years. Hormonal therapy is one of the most widely prescribed treatments for hormone receptor-positive breast cancer because it reduces the risk of recurrence (the cancer coming back).
It’s not always easy to follow your doctor’s advice and take these medicines as prescribed, though. For many people, hormonal therapy causes side effects that are hard to tolerate.
In fact, multiple studies suggest that up to half of women who receive a prescription for hormonal therapy either don’t start taking it, skip doses, or stop taking it early. In many cases this is because they’re experiencing — or are worried about having — side effects such as hot flashes, joint pain, weight gain, depression, vaginal dryness, trouble sleeping, fatigue, and difficulty concentrating. There’s also a risk of developing less common but more severe side effects from certain hormonal therapy medicines, including stroke, blood clots, heart problems, osteoporosis, and endometrial cancer.
For many people, the question becomes: Do I stick with hormonal therapy and get the benefits, or stop hormonal therapy and get relief from side effects? But the reality is not so black-and-white: There are ways to improve your quality of life while taking hormonal therapy, and understanding your own individual risk can help you and your doctor make changes that will help you find the right balance.
What to expect if you stop hormonal therapy
Hormonal therapy is usually a long-term treatment, and it’s most effective when taken as prescribed.
Research shows that not taking hormonal therapy as prescribed (taking less medication than was prescribed, skipping doses, stopping early, never starting) can put you at greater risk for breast cancer recurrence, metastatic spread, or cancer-related death.
The level of risk is not the same for everyone, though. It varies depending on individual diagnosis, age, and other factors.
Studies that included large numbers of women diagnosed with early-stage, hormone receptor-positive breast cancer found that not taking hormonal therapy as prescribed raises recurrence risk. For example:
A study published in 2016 found that postmenopausal women who stopped hormonal therapy early were 35% to 56% more likely to have a recurrence than those who didn’t stop taking the medicine early.
A study published in 2021 found that premenopausal women who stopped hormonal therapy early were nearly twice as likely to have a recurrence compared with those who completed the recommended treatment.
6 tips if you’re thinking of stopping hormonal therapy
Making decisions about hormonal therapy can be tricky, especially if you feel like you’re having to choose between your quality of life and lowering your risk of recurrence. These tips can help.
If you haven’t started taking hormonal therapy yet, don’t assume that you’ll have bad side effects. You may be one of the people who tolerates hormonal therapy relatively well. “People often have preconceived notions about hormonal therapy, such as that they’ll gain 20 pounds and have uncontrolled hot flashes,” says Robin M. Ciocca, D.O., a breast surgical oncologist at Main Line Health in Wynnewood, Pennsylvania. “But that’s not always the case.”
Before you refuse hormonal therapy or stop taking it early, talk with the healthcare provider (usually your oncologist) who’s prescribing the medication. Openly discuss your concerns and describe any side effects you’re having if you’ve started taking the medication. Ask about ways to lessen side effects and other treatment options, such as changing the dose or type of hormonal therapy medication. If possible, try to have this conversation early on — don’t wait until side effects are becoming intolerable.
If the first healthcare provider you speak with isn’t offering ideas about addressing side effects or changing your medication in any way (or worse, is acting dismissive or judgmental about your concerns), don’t give up. It’s worth finding a helpful provider, even if that means switching to a different oncology practice or to a breast cancer survivorship clinic.
“You should be able to feel comfortable discussing your concerns about hormonal therapy with your care team and they should acknowledge that you have choices,” says Erin Roesch, MD, associate staff breast medical oncologist at Cleveland Clinic in Cleveland, Ohio. “The role of your care team is to make sure you have all the information you need to make the decisions that are best for you.”
Doctors prescribe hormonal therapy because studies that included large numbers of patients have shown that, overall, it reduces the risk of recurrence and of dying from breast cancer.
“There’s a lot of research showing that it’s an effective treatment that can save people’s lives,” says Dr. Ciocca.
However, the degree to which taking hormonal therapy is important for lowering your risk can vary depending on your individual situation.
When you’re talking with your oncologist about your hormonal therapy treatment plan, ask how much risk reduction you as an individual can expect from taking hormonal therapy and how long you’d need to keep taking it to receive some benefit.
“The benefit that you gain from hormonal therapy depends on a variety of factors like the stage and size of the cancer, tumor biology, and your age,” says Nawal Kassem, MD, an oncologist who specializes in breast care at IU Health Melvin and Bren Simon Comprehensive Cancer Center in Indianapolis, Indiana.
There are also online risk calculators that can help you understand your individual risk of recurrence or cancer-related mortality and the benefit you could receive from taking hormonal therapy. But if you use these, you should always ask your doctor to help you interpret and understand your results.
If your oncologist is recommending that you take hormonal therapy for more than five years, you may want to ask if genomic testing would make sense for you. Genomic tests analyze a sample of a cancer tumor (that was removed during the original biopsy or surgery and preserved) to see how likely it is to grow and spread. Genomic tests may help estimate your individual risk of the cancer returning after five years. That, in turn, can help you and your doctor make decisions about whether you’d benefit from taking hormonal therapy for more than five years.
Genomic Assays: What Are the Different Kinds and How Do They Work?
Jul 28, 2023If at any point you’re struggling to take your hormonal therapy medicine as prescribed, ask your oncologist if making any of the following changes to your hormonal therapy treatment plan would make sense in your unique situation:
Taking a lower dose of the hormonal therapy medicine
Taking the hormonal therapy medicine for fewer years than were originally prescribed (for example, taking it for two years instead of five)
Switching to a different hormonal therapy medicine to see if you have milder side effects. Your doctor may recommend that you take a six- to eight-week break in between (after stopping the first medicine and before you start the second). This may help you and your doctor determine if your side effects are related to the hormonal therapy medicines or other causes.
Taking temporary breaks from hormonal therapy to give you some relief from side effects or to see whether or not your side effects are related to the hormonal therapy.
If you were originally prescribed tamoxifen or an aromatase inhibitor and an ovarian suppression medicine (such as Zoladex or Lupron), switching to just taking one of those.
Stopping hormonal therapy.
Keep in mind that there are strategies that have been shown to be helpful for easing most side effects from hormonal therapy.
Getting regular exercise can help with joint pain and increase bone density.
Acupuncture can be helpful for joint pain, hot flashes, fatigue, depression, and anxiety.
Certain prescription medicines can reduce the number and severity of hot flashes, such as Neurontin (chemical name: gabapentin) and Effexor XR (chemical name: venlaxafine HCI).
Cognitive behavioral therapy (CBT) is a form of talk therapy that’s often effective for treating chronic insomnia and other issues.
Vaginal moisturizers and lubricants can help relieve vaginal dryness and irritation.
Topical estrogen therapies are another option for vaginal dryness and irritation, and are often safe for people with a history of breast cancer (but check to see if your doctor recommends them for you).
Talk with your healthcare team about these and other strategies and ask for referrals to specialists who can help with side effects.
Finding the best solutions for you
What’s most important is knowing that you have options and that you can work with your healthcare team to find ways to balance lowering your risk of recurrence and maintaining the best possible quality of life.
“I think a key conversation doctors and patients should be having is: How can we minimize the toxicity and maximize the benefits of hormonal therapy?” says Dr. Kassem.
You can also talk with your healthcare providers about other things you can do to keep your risk of breast cancer recurrence as low as possible. For example, certain lifestyle changes, such as maintaining a healthy weight, quitting smoking, limiting alcohol, and eating a balanced diet, may make a difference, too.
This content is supported in part by Lilly, AstraZeneca, Biotheranostics, Inc. A Hologic Company, Pfizer, Gilead, Exact Sciences, Novartis, Seagen, and MacroGenics.
— Last updated on September 30, 2024 at 5:31 PM