Ductal Carcinoma in Situ (DCIS)

Mastectomy for DCIS: physical and emotional recovery

At home, most women said they were careful not to lift anything heavy or over-exert themselves physically, including with housework. Some said they had a bit of pain or discomfort around their wound and under their arm to begin with, and took painkillers to ease it. Many said they had support from family until they felt able to do everything themselves again. A few said they had a visit from a district nurse.
Most women noted that they recovered well, one saying she was playing sports again six weeks after surgery. A few women, though, said they had problems with their arm, such as cording, which feels like a tight cord running from the armpit to the back of the hand. It is thought to be due to hardened lymph vessels and can sometimes make it difficult to move the arm. Physiotherapy can help and sometimes antibiotics may be prescribed. The pain usually gets better gradually over a few months, but can sometimes come back.
The area around the wound is bruised and there may also be a build-up of fluid, which can make it swollen and puffy for a while. This should gradually disappear over a few weeks. Occasionally, quite a lot of fluid can build up in the area around the wound. This is known as a seroma. It may need to be drained off by a nurse or doctor. Some women who had problems with their arm after surgery had physiotherapy. Many also talked about exercising to help keep their arms mobile. Some said they exercised regularly for longer than was suggested because they were keen to look after themselves as much as they could. Several also recommended looking after the mastectomy scar by massaging it with cream.
Many women said that, as well as recovering physically, they also had to come to terms with having had a mastectomy, several saying that the physical recovery was easier and quicker than the emotional. Everyone reacts differently to having a mastectomy. Some women said that, because their main fear was having cancer, having a mastectomy was something they accepted with a bit of time. A few woman with young children said their main concern was their children. Two younger women said that, for them, the thought of having a mastectomy was actually more difficult than living without their breast.
For many women, though, losing a breast was very emotional and difficult, and they talked about the different feelings they had after surgery and over time. Some women felt that losing their breast was like a bereavement and they had many different feelings, including anger and sadness. Several said they felt anxious and depressed afterwards and counselling or joining a breast cancer support group had helped. Many said they would have liked to talk to other women with DCIS (see Support from other women with DCIS or breast cancer).
With hindsight, a few women said they found it difficult to accept they’d had a mastectomy and they wondered if it had really been necessary for a precancerous condition.
For a few women, their experience of having a mastectomy was greatly influenced by their perception of the care they had received in hospital. While most were happy with the care from doctors and nurses, some felt that staff could have been more compassionate. One woman sought a second opinion because she felt dissatisfied with a consultation with her surgeon, which she felt had been rushed and hadn’t give her the information she needed. A few said they had been made to feel like ‘a piece of meat’ rather than a person and felt that their care could have been more sensitive.
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Last reviewed July 2017.


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