Everyone is different and people vary in how much information they want, when they want it, and where they get it from. Some women said they were happy with the information they received from health professionals when they were diagnosed with DCIS, several saying they had lots of verbal and written information from the breast care nurse, including leaflets. These leaflets were also helpful sources of information for friends and family who wanted to learn more about DCIS.
Some women felt that they weren’t given enough information when they were diagnosed, several saying that, even if it had been given verbally, they were in too much of a shock to take it all in. Many who felt they didn’t have enough information looked for more, often on the internet. Others requested another consultation in order to ask questions.
One woman, who was shocked to be told at diagnosis that she would need a mastectomy, said she was given too many details that day about the operation and what would follow. She said that this had been unhelpful as she could not take it all in.
Information about DCIS
Some women said they looked for information before they were diagnosed because they were concerned about needing a biopsy and what the outcome might be. One woman said she phoned a breast cancer charity and wanted to know more about ‘chalk’. Other women said they tried to find out more about calcifications or calcium deposits. Some said that they would have liked more information about the diagnostic tests for DCIS because this might have prepared them better for having them.
Only one of the women we spoke with had ever heard of DCIS before so, for many other people, finding more information about it was very important. Some women said they would also have liked more information about the different grades of DCIS and about the likelihood of it developing into invasive breast cancer. With hindsight, several wondered if invasive breast cancer would be a more ‘straightforward’ diagnosis than DCIS because so little is known about how DCIS develops.
Some women said that, before their own diagnosis, they hadn’t known that symptomless cancers existed but felt that this was important information that all women should know. Similarly, some women hadn’t known that breast cancer could present with symptoms other than a lump. One woman, who had been diagnosed with DCIS and Paget’s (a rare cancer that affects the nipple), said she never knew that nipple discharge could turn out to be Paget’s Disease or cancer.
Most women said they would have liked more information about recurrence after treatment for DCIS, some wondering whether DCIS was more likely to recur if it had been high-grade. Some also would have liked to know more about the risk factors for DCIS.
Several women said they would have liked more information about Hormone Replacement Therapy (HRT) and DCIS, particularly if they’d had to come off it after being diagnosed.
Information about treatment
With hindsight, some women said that they would have liked more information about surgery for DCIS. This included information about what would happen when they went into hospital, the wire localisation procedure for wide local excision, the general anaesthetic, looking after the wound at home and how much time they would need off work.
Some women questioned the need for a mastectomy for DCIS, several saying they would have liked more information about why a mastectomy was recommended, whether DCIS treated by mastectomy was over-treatment, and whether there were any alternatives to surgery, including specific diets. Women also acknowledged that some of the information they would have liked was simply not available because DCIS is not fully understood by doctors.
Several women who had had mastectomies said that, had they had more information about DCIS, they might have waited a bit longer before having surgery. This would have given them time to weigh up all the possible treatment options before making a decision. Women also wanted to know why lymph nodes were sometimes removed for DCIS (see Mastectomy: The operation
). One woman, who’d had a double mastectomy, said that it was only after she left her job that she had time to learn more about DCIS. Some of the information she found made her wonder if she had ‘over-reacted’ by opting for a mastectomy. However, she gained reassurance from talking to the breast care nurse and reading a copy of her pathology report. Several women said they asked for a copy of their pathology report, while others said they would like a copy or were trying to get one. One woman said she would have liked to see her pathology report after her biopsy. Another asked to see her mammograms.
Many women who had breast reconstruction said they would have liked more information about the different types of reconstruction before they made a decision. Several also said that they benefited from talking to other women who’d had similar surgery and, often, from seeing how their reconstructed breast looked (see Breast reconstruction using: an implant
; an LD flap
; a DIEP flap
Some women wondered why they needed no further treatment after surgery, while other women they’d known, heard or read about had radiotherapy or hormone therapy, a few saying that they would have liked to have known whether they were hormone receptor positive. They wondered why women with DCIS often received different treatments and why doctors have different approaches to treating the same condition. Many women who had completed their treatment had unanswered questions about DCIS in general or the particulars of their own case, and some said they felt it was too late to ask.
Information about breast screening
Some women said they would have liked more information before going for breast screening about all the possible outcomes of screening, including DCIS. They felt that this might have prepared them better for the possibility of a DCIS diagnosis. Other women, though, felt that information about DCIS before screening would be unhelpful because it could cause a lot of unnecessary anxiety. Several women questioned why screening was offered for a disease that is not fully understood, though others wondered how long it would have taken for their condition to be diagnosed had they not gone for screening (see Views on breast screening
Sources of information
Women got helpful information from various sources, including books, leaflets, medical journals, the internet, health professionals, cancer charities, friends, and other women with DCIS or breast cancer.
Some women said they got a lot of useful information from their breast care nurse and found it helpful that they could ring her any time that they were concerned about their diagnosis or treatment. One woman was given a reading list by a breast care nurse and found all the information she needed in a book about breast conditions. Another, who had private healthcare, said she had monthly phone calls from her breast care nurse and found these extremely useful. She wanted lots of information at every stage of treatment because she found it easier to cope this way. Other women said that the information they received helped them to know what to expect at each stage. One woman said she phoned a breast cancer helpline for information rather than her breast care nurse because she wanted to be completely anonymous.
Although most women were happy with the information they got from their doctor, a few wanted a second opinion. Several women said that, until their own experience, they didn’t know who the different healthcare professionals were, a few saying they would have liked more information about the staff that were treating them.
Many women used the internet for information and said they found the websites and forums of breast cancer charities particularly helpful. Through these websites, they asked other patients questions, helped others by sharing their own experiences, and some were put into contact with other people in a similar situation. Getting information this way was often important because women could stay as anonymous as they wanted. Several said that, reading or hearing about other peoples’ experiences was reassuring and helped them put their own situation into perspective.
For some women, information on the internet was unhelpful because they found it negative or worrying. One woman who often used the internet said she had to ‘wean’ herself off it. Others said that information online was confusing or contradictory, sometimes because there was just too much there.
One woman said she wanted support rather than information and, like many others, to talk to other women who’d had DCIS. Many women said that they wanted to know more about the experiences of other women and those who did talk to other women in a similar situation often found it helpful and encouraging. One woman said she felt ‘desperate’ to talk to other women but didn’t know how to go about doing this. A few younger women said they would have liked to talk to other younger women with children. A 67-year-old woman said she would have liked to speak with someone of her own age. Most women found out about the experiences of other women or were put into contact with them through breast cancer charities, particularly Breast Cancer Care. Some women said that information and support through these women was extremely helpful and they wished they’d been told about this when they were diagnosed. Some women also said that joining a breast cancer support group was useful for information and support.
A few women found talking to other women with DCIS unhelpful because the women they spoke with were several years on from treatment and this was too far down the line for them, or they were not well matched in other ways.
Some women said that they kept all the information they had collected in one place for future reference, and recommended this to others.