When people receive a diagnosis they often want to know what it has been like for other people who have been through it – this is, of course, one of the reasons that this website was set up. Many of the women we talked to had very much wanted to find out how others had dealt with DCIS, how they had made sense of having a ‘pre-cancer’, how they had made decisions about treatment and what it was like to have a breast reconstruction.
Some of the women we talked to sought out other women with DCIS on internet support groups, forums or through breast cancer charities. Many of them found talking to other women who had been through something similar extremely supportive and informative. One woman described the internet forums as ‘the best thing’ which helped her after she left hospital.
Since leaving hospital, Linda has not contacted the breast care nurse. She prefers support from…
Sometimes women decided that they would like to offer support to other women who are going through diagnosis and treatment. One of the women we talked to was offering support to other women with DCIS via Breast Cancer Care. Another had set up a support group with another woman who she had met in a chat room. The group supports women who are facing breast reconstruction with information and the opportunity to see (in private) what a reconstructed breast looks like.
Beverley has set up a support group for women going through breast reconstruction.
Some women said they attended breast cancer support groups. There are many cancer support groups in the UK – some run by professionals and some by patients. One woman who accompanied her friend (who had stage two breast cancer) to a support group said that she was pleased to have discovered that support groups exist, although she did not think that it was what she needed at this stage.
One woman said she was wary of attending a local cancer support group because it included people of all ages, both genders and all cancers. She felt that she would prefer to discuss her DCIS in a women only group. She contacted the mother of one of her son’s schoolmates who had had breast cancer and found that the other mothers she knew were very sympathetic. She thought other women could relate to what it might be like to have breast cancer, although she thought it was hard for men to understand how important it might be to women. Another woman, who wanted to find out what a reconstruction might be like, said it was ‘terrible’ that her local hospital did not run a breast cancer support group.
Some women explained that the differences between DCIS and invasive breast cancer meant that only other women with the same diagnosis could truly understand how they felt. A woman who had contacted other women with DCIS discovered that they all shared a feeling that they were ‘frauds’ because they did not have ‘real’ breast cancer.
Women with DCIS need to be put in contact with each other to help dispel the confusion and…
Busy breast clinics may not always distribute information about local or national support groups or recommend websites to women with DCIS. One woman only found out about her breast care nurse when she contacted Breast Cancer Care – no-one at her hospital had put her in touch with either the nurse or the local support group. She concluded that there should be an information pack for all women when they are diagnosed.
Pauline thinks that women who are diagnosed with DCIS should be given a little pack with…
Women were sometimes happy to manage with the support given to them by their friends and families and the information provided by health professionals. They felt no desire to talk to other women with DCIS either face to face or on the internet. One woman said that there was never a time when she thought ‘I can’t cope with this’ and another that she had thought about joining but did not because she did not want to spend ‘the rest of my life talking about my left breast’.
More experiences of breast cancer support groups can be found on the Healthtalk Breast Cancer site.