Ductal Carcinoma in Situ (DCIS)

Feelings about having a mastectomy for DCIS

Currently, women with DCIS are treated either by wide local excision (WLE) or mastectomy. Wide local excision involves the surgical removal of the affected breast tissue, together with an area (margin) of normal breast tissue around it, to ensure that all affected tissue is removed. WLE is an example of breast-conserving treatment – only the area of DCIS is removed, rather than the whole breast. Mastectomy involves removal of the whole breast and is usually recommended if the DCIS affects a large area of the breast, if it has not been possible to get a clear area of normal tissue around the DCIS by wide local excision, or if there is more than one area of DCIS. The treatment offered depends on factors such as the extent of DCIS and the grade.
 
Many women were extremely shocked and upset to hear they would need a mastectomy. They’d had no symptoms and were expecting to have nothing wrong after their routine mammogram. Some said that, when the doctor was giving them this news, they could hardly take it in (see Feelings about the diagnosis).
In addition to their emotional reactions, women’s attitudes towards having a mastectomy varied from those who felt comforted that it would reduce their chances of having problems with that breast again, to those who said it seemed a drastic treatment for a precancerous condition. A few women said they felt lucky the DCIS had been caught early and just wanted ‘to get rid of the cancer’. One woman accepted that a mastectomy was the best option because she didn’t want to worry about having breast cancer or DCIS again. She chose to have her remaining healthy breast removed a year later for this reason and to achieve a more balanced cosmetic result. A few women preferred a mastectomy to a WLE because friends who’d had a mastectomy in the past were now very well and healthy. Several said seeing an x-ray of the DCIS helped them to accept they would need a mastectomy.
 
One woman was diagnosed with invasive breast cancer in one breast and DCIS in the other. She agreed with her doctor’s recommendation to have a double mastectomy because she felt it would reduce her chances of any further problems. She also chose to have breast reconstruction at the same time. Another woman had invasive breast cancer and DCIS in the same breast. She said she ‘went along with’ the doctor’s recommendation of a mastectomy but could not come to terms with the thought of losing her breast.
Some women said they were offered breast reconstruction at the same time as the mastectomy (immediate reconstruction). Many wondered if it was easier, emotionally and psychologically, to accept a mastectomy if women had immediate breast reconstruction. One woman said she ‘grasped’ at this option because she didn’t want to come round after surgery with only one breast. Some women who were offered immediate breast reconstruction, though, said they declined it for various reasons (see Breast reconstruction using: an implant; an LD flap; DIEP flap).
Some women said they really didn’t want a mastectomy but felt they were given ‘no choice’ and had little control over the decision. A few women looked for more information about DCIS and were unhappy about having a mastectomy for a condition that might never progress. They said they would have liked more information about DCIS itself and the need for a mastectomy for it. Another delayed having a mastectomy for six months while she researched the condition and looked for alternatives to surgery.
The LORIS trial- is a trial comparing surgery with active monitoring for low risk DCIS. The aim of the trial is to learn whether women with low risk DCIS can safely avoid having surgery (see Cancer Research UK for more information).
 
Some women said they had counselling before surgery to help them face or accept having a mastectomy. Others said they would have valued having counselling to help them deal with the shock, and many of those who did have it found it helpful.
 
Some women had a wide local excision first but, because there weren’t clear margins, they were given the choice of having more breast conserving surgery or a mastectomy. Many of these women found this an extremely difficult decision to make and, for a few, it was the hardest time of all. Having already had one or more breast operations, hearing they would need more surgery was distressing. One woman, though, said she had prepared herself for the worst when she went for the pathology results from her WLE. She chose to have a mastectomy next because she didn’t want to face the possibility of several excisions in a hospital that was some distance away from home.
One woman who had a WLE had DCIS again six years later and then chose to have a mastectomy.

Last reviewed July 2017.
Last updated July 2017.

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