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What If I Don T Take Tamoxifen

what if i don t take tamoxifen

What is tamoxifen?

Tamoxifen has been in use for a long time — over 30 years. It is classified as a selective estrogen receptor modulator or SERM. Tamoxifen and raloxifene, a similar drug, are the only medications to be FDA-approved for prevention of breast cancer in women who are at higher risk because of familial risk factors. Only tamoxifen can be used for prevention in all women, and raloxifene can only be used in postmenopausal women. Tamoxifen has also been used as a primary treatment for some early stage forms of cancer and as a secondary, or adjuvant (supportive), treatment in more advanced cancers.

SERMs like tamoxifen are endocrine therapies, meaning they affect how hormones work. SERMs work by blocking the effects of estrogen in the body’s tissues. Other endocrine therapies suppress the body’s production of estrogen in various ways. Since 70% to 80% of breast cancers are estrogen receptor-positive — they grow in response to the presence of estrogen — tamoxifen and other endocrine therapies are used to treat the majority of breast cancers that develop in women.

What is tamoxifen used for?

Tamoxifen is often used for breast cancer prevention in high-risk women. This includes both women with family-related risk factors who’ve never had cancer, as well as women who’ve already had a lumpectomy or mastectomy for a previous estrogen-receptor positive cancer. In this group, tamoxifen is used to prevent cancer from spreading or recurring. Tamoxifen is also used regularly to treat early-stage cancers, such as ductal carcinoma in situ (DCIS), particularly in younger women who seem to tolerate it better.

When it comes to advanced, later-stage cancers, tamoxifen isn’t usually the first option because it is less effective and has more unpleasant side effects than some newer drugs. However, if newer drugs aren’t enough, tamoxifen can sometimes be added, or used alongside radiation therapy and surgery to treat advanced breast cancer.

How should we interpret the findings?

We spoke to our head information nurse, Martin Ledwick, about what he thought of the findings, and what women should make of them.

“This study highlights the fact that a significant number of women don’t take their tamoxifen – either for as long as they should, or every day as prescribed.  Worryingly, this can make it more likely that their cancers could come back, leading to more treatment and a worse outlook for them,” he told us.

This is an important issue, says Ledwick, and raises lots of questions about whether and how doctors and other healthcare professionals can help and support women to continue with their treatment, or to take it regularly.

 However, there’s an important caveat. “The study doesn’t look at why women didn’t take their tamoxifen as prescribed, and doesn’t differentiate between women who stopped taking the drug completely, and those who seemed to take it inconsistently.”

“So to find out how best we can help women to stick to their treatment plan we would need to understand more about why they didn’t in the first place,” Ledwick says.

“Tamoxifen does have side effects, but women have different individual experience of their severity.  Some women find these side effects very hard to bear and perhaps this is one of the reasons why they stop taking tamoxifen.  If women choose to stop taking a drug because of its side effects, it is important that they have made an informed choice,” he says.

Hormone Therapy

Since DCIS is not capable of spreading, there is no reason to use chemotherapy. However, if the DCIS is ER-positive you will need to consider whether you want to take tamoxifen for five years to reduce your risk of a recurrence. The decision to take tamoxifen for DCIS is a difficult one for many women, as the benefits from taking it are small and have to be weighed against the risks associated with the drug as well as any side effects you may experience.

Learn more about hormone therapy here.

If you have a family history of breast cancer in addition to DCIS and you want to understand more about whether your family history may contribute to your breast cancer risk, you should make an appointment with a genetic counselor to discuss testing for the hereditary breast cancer gene mutations, called BRCA1 and BRCA2, which put women at higher risk for breast and ovarian cancer. The National Cancer Institute and the National Society of Genetic Counselors can help you locate a genetic counselor near you. Under the Affordable Care Act, genetic counseling and testing are covered for high-risk women.

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