Many women we spoke with were shocked when they were diagnosed with DCIS because they’d had no signs or symptoms. They had been for a routine mammogram and were fit and healthy, so were expecting nothing to be wrong. Some felt that, had they had symptoms, they might have been more prepared for the diagnosis.
Most women were told by a breast surgeon that they had DCIS, what this meant and the treatment they would need. Many said that the doctor drew a diagram and explained that the DCIS was contained in the milk ducts. Some women said the doctor did not use the term DCIS but said they had precancerous cells, calcifications, non-invasive or early breast cancer. One woman said that the doctor explained to her that it was ‘not cancer as you might know it’ and that DCIS could take years to become invasive. Whatever terms were used, however, hearing that they had DCIS was still shocking for most. As one woman put it, ‘Just the word cancer’ frightens most people because of what they have heard or read about it. Some said they felt numb, scared or frightened, a few saying it felt ‘surreal’. One woman said she immediately blamed herself because she used to smoke. Several said that, whereas usually they were quite chatty, on hearing the diagnosis they became speechless and subdued.
Those who were recommended a mastectomy were often particularly shocked because it was completely unexpected and sounded very drastic treatment for something that wasn’t ‘proper’ cancer. Some were told that they could have breast reconstruction at the same time, but all this information in one go was sometimes too much to take in. There was usually very little time between diagnosis and surgery and, for some women, this was difficult because they were still coming to terms with the diagnosis.
Some women found it difficult to concentrate on the rest of the consultation after being told the diagnosis. One was also preoccupied by worrying about her car park ticket expiring as she had been in the hospital for longer than she’d expected.
In the days following diagnosis, some women said they had difficulty concentrating on their work or everyday activities and had tearful moments. However, others found that keeping busy at work or at home was the best way to cope. Several women reacted by finding out as much as they could about DCIS but were dismayed to discover that it was not fully understood by doctors. One was angry at being ‘dropped into this uncertainty’ and said she needed to be able to understand her disease in order to deal with it. Others, though, said that after reading that DCIS has a very good prognosis, they felt reassured or positive.
Some women said that learning that DCIS was precancerous was ‘a comfort’, a few women saying that they had feared the worst when having tests. For these women, being told they had DCIS was a better outcome than they had expected. Others said they felt reassured knowing that it was a very early form of breast cancer, ‘not full blown cancer’ or ‘caught very early’. Some women who would be having a wide local excision were glad their surgery would follow soon after diagnosis and they would be discharged from hospital on the same or next day. With hindsight, a few women said that having DCIS had just been ‘an interruption’ because they had got on with life as normal soon afterwards, one woman saying, ‘it’s been a distraction really, something to be dealt with rather than something to agonise about’.
Several women said that, after receiving the diagnosis, they found it hard to talk to other people about it and bottled up their feelings, sometimes to protect others. One woman said she coped very much on her own because she didn’t want to have to deal with other people’s reactions of upset or pity. Other emotional reactions included difficulty sleeping, a need to eat comfort food, and no longer feeling in control of life.
Some women said that, although they were shocked, they were more worried about their partner or children. A few were anxious about telling their husbands because they’d had their own health problems to deal with. Some women were worried about how their children would react, especially if they were in the middle of exams. A few were reluctant to tell children or were concerned about the best way of telling them (see Telling other people
). One woman said that she ‘just got on with it’ after her diagnosis but it was harder for her best friend, who felt helpless.
Some women said they started to think about the emotional aspects of their condition only after their surgery, or that the emotional impact of the diagnosis long outlasted the physical impact and that their feelings were not always acknowledged. One said that, although she’d felt positive whilst getting through treatment, she became depressed later when she had to deal with several other problems. Another discussed how, many months after her mastectomy, she still sometimes found it hard to accept that she’d had cancer. One woman said that, months after her diagnosis, she was still trying to get her life back to normal with the help of counselling and life coaching. Some women worried, especially at first, that their DCIS might return in the future or it could appear in the other breast.
Some women said that, though they felt shocked and frightened to be diagnosed with DCIS, they also felt guilty because it was ‘only’ DCIS and not invasive breast cancer. One of them found it difficult to join a breast cancer support group because she felt a ‘fraud’. Several pointed out that, although they ‘only’ had DCIS, they had still needed to go through the same treatment as women who had invasive breast cancer.
Although the chances of recurrence after DCIS are small, one woman we spoke with said she was extremely shocked when, after an annual mammogram, she was diagnosed with DCIS again. Another said she was frightened after being diagnosed with invasive breast cancer soon after having DCIS, which was found at a follow-up appointment.