Many women we spoke with who had DCIS discussed their views on breast screening. None of them had heard of DCIS before being diagnosed and felt that, if they had, they might have been more prepared for the actual diagnosis.
Some women with DCIS were glad they went for breast screening and recommended it to others. One woman said that, if she hadn't had a mammogram, her DCIS might have become invasive breast cancer and stressed that early detection often meant a greater chance of successful recovery. Follow-up appointments reassured her because potential breast problems would be detected at an early stage.
Other women also emphasised that, had they not gone for screening, they would have never known there was a problem until much later. Several women felt that breast screening had saved their lives.
A 48-year-old woman with DCIS recommended that younger women have both mammograms and ultrasound scans because mammograms can be less reliable in women under fifty (see 'Breast screening and younger women'). She believed that the discomfort should not deter women from having mammograms because it is short-lived and could be caused by a benign condition. Another young woman said that she had a mammogram at the age of forty-three only because she was randomly invited to take part in medical research on breast screening. She was found to have DCIS and pointed out that, although she hadn't felt any breast symptoms, she had been feeling tired. Her experience led her to believe that breast screening should be available to women from the age of forty (see 'Breast screening and younger women').
Several women said that the current NHS breast screening leaflet didn't mention DCIS, yet it accounts for one in five cancers (twenty per cent) found through breast screening. Unlike invasive breast cancer, DCIS rarely causes symptoms. Most women knew about breast symptoms, such as lumps, and felt that women should be informed that symptomless breast cancers can also occur.
Several women said that, before having DCIS, they'd never questioned that breast screening was a good thing. One said she had trusted the medical profession because they were going to so much trouble to make breast screening widely available. However, having had DCIS and learned how poorly understood it was, she regretted having gone for breast screening and felt that screening shouldn't be offered for something that doctors don't know how to treat. She decided not to go again as she felt there was little point in finding DCIS again, now that she knew it could remain harmless for many years. She believed that most women went for screening because it was accepted as the social norm and promoted as responsible behaviour. She felt that women should be told more about the benefits and risks of breast screening so they could make a properly informed decision about whether to attend. She also expressed concerns about the emotional, psychological and financial costs of cancer screening generally.
Several women were shocked to be diagnosed with DCIS and to have a mastectomy for such an early form of breast cancer. Many felt that women attending for breast screening should be told that detecting breast cancer early doesn't always mean less drastic surgery. Some women questioned whether any surgery for DCIS was necessary when it might never develop into invasive breast cancer. A woman who had a mastectomy for DCIS was left with mixed feelings about breast screening and said that, if DCIS was ever found in her other breast, she would choose not to have immediate surgery. She had attended breast screening completely unaware that she could be at risk and felt that the NHS breast screening leaflet didn't cater for the affected minority of women who ended up with a breast cancer diagnosis, and should mention risk factors for breast cancer.
Some women with DCIS were unsure about going for breast screening again because they didn't want to be faced with the uncertainties associated with DCIS. After having a mastectomy, one of these women had delayed having the remaining breast screened because she hadn't decided what she would do if faced with another DCIS diagnosis. She had found it difficult to come to terms with her diagnosis, partly because, having been told she needed a mastectomy, her doctors couldn't find any DCIS in the breast they'd removed. She was uncertain about going for screening again because she felt that breast screening had caused her unnecessary suffering and she hadn't yet got her life back to normal after her diagnosis. She had stopped taking HRT, which she felt might have caused her DCIS, and wondered whether she had now eliminated the risk of getting DCIS again (see 'HRT').
Women whose DCIS hadn't shown up on mammograms or ultrasound scans hesitated to have more such tests at their post-treatment check-ups. After her mastectomy one woman sometimes wondered whether she should have her other breast removed since she doubted the ability of diagnostic tests to detect breast cancers. Despite their doubts, these women encouraged others to go for breast screening.
More experiences of DCIS can be found on the Healthtalkonline DCIS site.
Last reviewed November 2010.
Last updated November 2010.
