by Natasia Hamarat
Natasia Hamarat is a Belgian PhD candidate in sociology of health at the Université Libre de Bruxelles. She tells the story of Isabella, a young woman diagnosed with breast cancer whom she interviewed during her earlier graduate work. Isabella’s story shows how hard it can be to live with the side effects of hormone therapy, especially when these are downplayed by physicians.
Before I introduce Isabella let me tell you about a drug called Tamoxifen. Both pre- and post-menopausal women may be prescribed this drug as a treatment for some types of breast cancer. The drug inhibits (blocks) the estrogen receptors in breast tissue to reduce estrogen’s ability to fuel cancer growth. The main goal of this drug, routinely taken for five years, is to help prevent recurrence should there be any breast cancer cells lingering in the body after treatment. Oncologists generally maintain that Tamoxifen is “well-tolerated,” a vague, euphemistic concept that generally ignores or underestimates side effects. Many patients, particularly pre-menopausal women, vehemently disagree with this statement. An estrogen-reducing drug like Tamoxifen may induce early menopause or cause articular (joint) pain, sleep disorders, weight gain, loss of libido, hot flashes, and a range of other side effects that may seriously impact health and disrupt quality of life.
Isabella, 41, lives in Brussels and was diagnosed with breast cancer four years ago. Her mother died from ovarian cancer before age 50, and she understands that a family history involving both of these cancers increases her risk. Yet she does not dwell on the traumatic moments of her life. She said at the beginning of our interview that “to de-dramatize, it’s my forte!” Isabella presents herself as a “lover of life.” When she told me her story, she had a funny anecdote for every episode of her illness, mocking her doctors and close relatives alike. This aspect of Isabella’s personality contributed to her belief that she should not have to be less healthy or vital because of cancer. If medicalization was going to lead to a potentially devitalizing situation for Isabella, she was ready to criticize it radically. Such was her experience with Tamoxifen.
After Isabella started taking tamoxifen, she felt like a different person. The hot flashes were not just frustrating, they were physically draining. Isabella explains,
“One can think that hot flashes are just feeling hot, that [they’re] annoying. But hot flashes are not just feeling hot… I become like a pressure cooker, and I consume a lot of energy… so it means that when [the flash] goes away… my energy falls… It is exhausting!”
She goes on to say that the depletion of estrogen has had negative effects on her emotional well-being:
“I mean, they took a hormone… [a] pleasure hormone, [found in]… laughter [or] in the simple pleasure of eating or in an orgasm. I said to myself ‘I feel I need this. This is what makes us feel more alive.’ I do not enjoy things at a hundred percent, and I miss it.”
Isabella was exhausted, but she also couldn’t sleep. Sleep deprivation thwarts your zest for life, dumbs you down, leads to mistakes, affects self confidence, and can have lasting effects on one’s social and professional life. Isabella’s insomnia led to distraction at work, hypersensitivity, and poor morale that affected her feelings of self-assurance and her ability to do her job. She describes,
“I couldn’t get asleep. I didn’t get to take naps during the day, so I fell asleep at three, four, five, six in the morning, depending on the day. In my job [she’s an accountant], I can make little errors… luckily I didn’t make any serious ones, but I have the impression I’m making more errors. Sometimes I [feel like I’m] becoming stupid. It’s as if all my skills dropped because of the fatigue.”
Because Isabella was more sensitive and cried more easily after taking Tamoxifen, it was hard for her keep up her spirits. She wasn’t depressed in the classical sense, but she was no longer the first person to laugh or joke around like she used to do.
Unfortunately, Isabella got no relief from these side effects. Her doctors didn’t seem to bother with them and instead labeled her a rebellious complainer, something that deeply angered her. In her words,
“They [the doctors] don’t give a damn if I’m not sleeping… They don’t look for a solution. They write in my medical dossier: complains of insomnia, but it ends there. When I see my dossier, I see mainly that everything has been well-explained to me and that I’m rebelling against this, against that. But I don’t agree with the fact that everything has been well-explained, and I don’t agree that I’m rebelling.” (She laughs).
Isabella’s exasperation about her treatment and her doctors’ inattentiveness to side effects and aftercare, motivated her to join a patients’ association and a mutual support group where patients may share their common and individual experiences. In fact, today she’s an organizer for one of these groups to bring attention to the social and personal impact of cancer treatment on younger women. Despite institutional measures in Belgium and elsewhere to personalize cancer treatment, the medical profession continues to ignore entire parts of the disease experience, particularly the social aspects.
Hormone therapy is a striking example of a type of silence in biomedicine about the impact of side effects that negatively affect dignity and quality of life for young women with cancer. Isabella tells her doctors that even though hormone-regulating drugs may have the potential to add some time to her life, she knows they will not protect her from relapse. So she wonders, “In the end, what am I protected from?”
“Demystifying Breast Cancer” is formatted as a PDF for you to print easily and share. Click here to download.
