Fear of the lifesaver

Christiane Fux studied journalism and psychology in Hamburg. The experienced medical editor has been writing magazine articles, news and factual texts on all conceivable health topics since 2001. In addition to her work for, Christiane Fux is also active in prose. Her first crime novel was published in 2012, and she also writes, designs and publishes her own crime plays.

More posts by Christiane Fux All content is checked by medical journalists.

The cancer drug tamoxifen can save lives: in many breast cancer patients, it can prevent the tumor from coming back. Even so, one in five women discontinues the little white pills prematurely. Often out of fear of side effects.

Tamoxifen is one of the so-called anti-hormones. These are used for hormone-sensitive forms of breast or ovarian cancer, but also prostate cancer, the growth of which is only really stimulated by sex hormones. But the therapy has its price: patients who take tamoxifen, for example, have side effects such as joint pain or menopausal symptoms such as hot flashes, hair loss and weight gain.

The package insert makes no secret of the possible complaints. And fear of side effects is also being fueled in discussion forums on the Internet. So it is not surprising that many patients fear long-term antihormonal therapy.

Self-fulfilling prophecy

But those who start therapy with fear of its side effects often find it more stressful. This is what Hamburg researchers found out when they questioned 111 breast cancer patients. "Women who expected more side effects before starting tamoxifen therapy actually observed more of these side effects themselves," reports Prof. Yvonne Nestoriuc from the University of Hamburg in an interview with

A classic case of self-fulfilling prophecy. With sometimes fatal consequences. Because, at 23 percent, almost one in four of these patients stopped treatment prematurely. "This also reduces the probability of survival," warns the psycho-oncologist. On the other hand, if the expectation of unpleasant side effects at the beginning of the treatment was low, only 13 percent of the women ended the therapy prematurely.

Potent tumor brake

Tamoxifen is a so-called anti-hormonal therapy. The active ingredient is taken by women who have hormone-sensitive tumors: on the surface of its cells are receptors to which the female sex hormone estrogen can dock. When this happens, the cells divide more often and the tumor grows. This includes those cancer cells that have survived chemotherapy and can become the nucleus of a new tumor. In the breast or - as a so-called metastasis - in another organ.

Tamoxifen stops this chain of reactions by blocking the estrogen receptors. With such agents, the likelihood that the cancer will come back can be almost halved. "Anti-hormonal therapy is the most effective thing we have available!" Emphasizes Nestoriuc. In this respect, the news that you have a so-called hormone-sensitive tumor can even be the better of the bad news: In the case of non-hormone-sensitive tumors, recurrences and metastases cannot be prevented as effectively. "For the therapy to be successful, however, it is important that the patients conscientiously take the medication for five years," says Nestoriuc.

What gets stuck is the worry about the side effects

Women who are supposed to swallow tablets for another five years after the grueling treatment marathon of surgery and perhaps chemotherapy and radiation, often do not correctly appreciate the enormous importance of such follow-up treatment. In particular, because information about anti-hormone therapy is usually given very early on. Namely when a first biopsy of the tumor tissue shows that it is a hormone-sensitive tumor.

Then completely different things and fears are in the foreground, Nestoriuc knows. In addition: “Doctors are legally obliged to explain possible side effects of a therapy. And these are what get stuck with women, ”says Nestoriuc. How effective the therapy is and why it is so urgently recommended is often left behind.

Tool case against fear

This is why the psycho-oncologist asks women what is most frightening about anti-hormone therapy. And that is very different: Those who have struggled with their weight all their lives are perhaps most afraid of gaining weight. Others are indifferent to a few pounds more, but joint pain is unacceptable to them because they have to remain mobile.

“Then we imagine together with the patients what if these complaints really did occur. In this way we can show you which options are then available - medicinal and psychological, ”explains Nestoriuc.

In just a few therapeutic sessions, the women put together a “mental tool kit” for dealing with the side effects. And finally feel well prepared for the all-important follow-up treatment. “Then you don't just know: every fourth woman who takes tamoxifen has hot flashes. They then also know exactly what they can do when it concerns them, ”says the psycho-oncologist.

A positive attitude protects

In addition, the psycho-oncologists impart techniques from pain therapy that help to distract oneself from the symptoms or to adopt a different, more positive attitude towards them - and thus to better endure the therapy.

It also helps to get the right information. Discussion forums, which naturally contain more horror stories than positive experiences, are not necessarily the best source: "You'd better ask your oncologist what exactly the drugs do and why the therapy is so worthwhile," says Nestoriuc. The scientist is convinced that positive information can reduce the side effects and thus the risk of termination. She is currently working on proving that too: She is already working on the next study.

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