Taking A Break From Tamoxifen: When, Why and What To Expect

Author: Molly Lindquist

Medically reviewed by Dr. Doug Blayney on September 11, 2024.

Today, I want to talk about something that many of us breast cancer survivors face: taking a break from Tamoxifen. It's a big decision, and I hope sharing my experience will help you understand it better.

Introduction

When I was first diagnosed with breast cancer, my doctor told me about a medicine called Tamoxifen. It's a pretty important part of treatment for many of us. But sometimes, we need to take a break from it. Understanding when and why we might need to do this is really important.

Understanding Tamoxifen

So, what exactly is Tamoxifen? Well, it's a type of medicine that doctors call hormone therapy. It's used to treat breast cancer, especially the kind that's affected by hormones like estrogen. Tamoxifen works by blocking estrogen in our bodies. You see, some types of breast cancer grow when there's estrogen around. By blocking it, Tamoxifen helps slow down or stop the cancer from growing. Usually, doctors want us to take Tamoxifen for quite a while - often 5 to 10 years. We take it every day, like a vitamin. It's a long time, but it's to help make sure the cancer doesn't come back.

Why Do People Take a Break From Tamoxifen?

While Tamoxifen is beneficial for blocking estrogen, it definitely brings things that can be challenging to deal with as well. Here are a few reasons some people think about taking a break from tamoxifen:

1. Side Effects: Sometimes, Tamoxifen can make us feel pretty uncomfortable. It can cause hot flashes, mood swings, or make us feel tired all the time.
2. Serious Medical Issues: In rare cases, Tamoxifen can cause more serious problems, like blood clots or changes in the lining of the uterus.
3. Pregnancy: If a woman wants to have a baby, she needs to stop taking Tamoxifen. It's not safe to take during pregnancy.
4. Financial Stress: Tamoxifen can be expensive, and sometimes people need to take a break because of the cost.

Some side effects of Tamoxifen can be made better by changing the time of day that you take Tamoxifen – switch from morning to bedtime, or bedtime to morning. Some side effects – including hot flashes, mood swings and tiredness – go away after time. In addition, there is some evidence that lower doses of daily Tamoxifen is as effective as the standard 20 mg dose may be equally effective. You should discuss these measures with your doctor when making your decision about temporarily stopping Tamoxifen – a “therapeutic holiday.”

Pregnancy and breast cancer treatment

This is a big one for many younger women with breast cancer. If you want to have a baby, you'll need to stop taking Tamoxifen. But don't worry - doctors have found ways to make this work. They might suggest taking a break for a couple of years to try for a baby, then starting the medicine again after.

What to expect if you stop hormonal therapy

If you do decide to take a break from Tamoxifen, there are a few things you should know:

1. Physical and Emotional Effects: You might notice some changes in how you feel. Some side effects might go away, which can be a relief. But you might also feel worried about not taking the medicine.
2. Risk Factors: There's a chance that stopping Tamoxifen could increase the risk of cancer coming back. This is something you'll need to talk about with your doctor.

Managing withdrawal symptoms and monitoring health during the break

If you stop taking Tamoxifen, your body might need some time to adjust. You might have some withdrawal symptoms, like feeling more tired than usual. It's really important to keep in touch with your doctor during this time. They might want you to come in for more check-ups to make sure everything's okay.

Restarting Hormonal Therapy

If you do take a break from Tamoxifen, you'll probably need to start taking it again at some point. Here are a few things to keep in mind:

1. Your doctor will give you guidelines on when and how to start taking Tamoxifen again.
2. They might change your dose or treatment plan a bit when you restart.
3. It's super important to keep going to your check-ups, even after you start taking Tamoxifen again.

Risk of breast cancer recurrence without hormonal therapy

I know this part can be scary, but it's important to understand. When we stop taking Tamoxifen, even for a short time, there's a higher chance that the cancer could come back. This is because Tamoxifen isn't there to block the estrogen that might make cancer cells grow.

Tips if you're thinking of stopping hormonal therapy

If you're thinking about taking a break from Tamoxifen, here are some tips:

1. Try not to make assumptions: Everyone's situation is different. What worked for your friend might not be right for you.
2. Talk with your doctor: This is so important! Your doctor knows your specific case and can give you the best advice.
3. Consider your individual risk: Your doctor can help you understand your personal risk of the cancer coming back.
4. Ask about genomic testing: There are tests that can help predict how likely it is for your cancer to come back. This might help you decide about taking a break.
5. Look into changing your treatment plan: Sometimes, switching to a different medicine or changing how you take Tamoxifen can help with side effects.
6. Learn about all your options for addressing side effects: There might be ways to deal with side effects without stopping Tamoxifen completely.

Medical Insights and Expert Opinions

When I was thinking about taking a break from Tamoxifen, I talked to a lot of doctors. They all agreed on one thing: it's a very personal decision. What's right for one person might not be right for another. They also said that for most people, the benefits of taking Tamoxifen outweigh the risks of stopping it.

We’ve been there. We get it.

The Manta Cares team is composed of cancer survivors, caregivers and oncologists - so we truly understand the challenges that come with a cancer diagnosis because we’ve been there. We are here to walk with you as you go through your own cancer experience. Please don’t hesitate to reach out with any questions. We are even developing disease-specific step-by-step maps to show you all the paths you might face during your cancer experience and connect you with relevant support and resources. Sign up for access to our Manta Maps here.

Be sure to subscribe to our newsletter and check out our free resources like our Chemotherapy Checklist for Caregivers, Financial Checklist for Cancer Treatment and more. We also put out a bi-weekly podcast called the Patient from Hell to educate, empower and hopefully inspire you as you go through this crappy experience. You can listen on Spotify, Apple Podcasts, YouTube or anywhere you listen to podcasts. Dealing with cancer as a patient or caregiver can feel really lonely. Just know that you are not alone in this experience.

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Conclusion

Taking Tamoxifen is a big part of many breast cancer survivors' lives. It's helped a lot of us stay cancer-free. But it's not always easy. Sometimes, we need to think about taking a break. Remember, the most important thing is to talk to your doctor. They know your specific situation and can help you make the best decision for you. Don't be afraid to ask questions or share your concerns.

If you do decide to take a break from Tamoxifen, make sure you have a plan. Know when you'll restart it, and keep up with your check-ups.

Living with breast cancer, or after breast cancer, isn't easy. But I found that taking it one day at a time is the best way to adjust to that “new normal” that everyone talks about. Whether you're taking Tamoxifen, taking a break, or exploring other options, remember that you're not alone.

FAQs for Taking A Break From Tamoxifen: When, Why and What To Expect

Q: Why would someone need to take a break from Tamoxifen?

Ans - People might take a break due to side effects, to try for pregnancy, or because of other health issues.

Q: How do I know if I should take a break from Tamoxifen? 

Ans - This is a decision you should make with your doctor, based on your individual situation and health needs.

Q: What are the risks of taking a break from hormonal therapy? 

Ans - The main risk is an increased chance of cancer coming back.

Q: What should I expect if I take a break from Tamoxifen? 

Ans - You might experience changes in how you feel, both physically and emotionally. Some side effects might go away, but you might also feel anxious about not taking the medicine.

Q: How long can I safely take a break from hormonal therapy? 

Ans - This depends on your individual case. Your doctor will advise you on the safest duration for your situation.

Q: Can I restart Tamoxifen after a break? 

Ans - Yes, in most cases you can restart Tamoxifen after a break. Your doctor will guide you on how to do this safely.

Q: Will taking a break from Tamoxifen affect my long-term prognosis? 

Ans - It might increase your risk of cancer recurrence, but the exact impact depends on many factors. Discuss this with your doctor.

Q: Are there alternatives to Tamoxifen if I cannot tolerate it? 

Ans - Yes, there are other hormonal therapies available. Your doctor can discuss these options with you.

Q: How can I manage side effects if I don't want to take a break from Tamoxifen? 

Ans - There are various strategies to manage side effects, including lifestyle changes and additional medications. Your healthcare team can help you find the best approach.

Disclaimer: All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only.  This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.