Ductal Carcinoma in Situ (DCIS)

Telling other people

Many of the women we talked to were accompanied by their husband, another family member or a close friend at the consultation where they were given the diagnosis. In the following hours or days they had to decide how (and in some cases whether) to break the news to other people, including their own children and parents.
 
One woman told her mother and children that it was ‘non-invasive, non-malignant and contained’. She told her friends and colleagues that it was not ‘full-blown cancer’ and that she felt very positive about it. But, as she pointed out, ‘the word cancer does frighten people’ and some wonder if they might also be at risk – particularly if the woman who is diagnosed seems healthy and does all the ‘right things’ to look after her health.
Some women chose to tell a sister before telling their parents. A few women were concerned that there might be a genetic link which could make them vulnerable to cancer – some women advised their sisters to have a mammogram. Those who had not mentioned to other people that they had been recalled after a mammogram were aware that the news was particularly shocking. Because most people have not heard of DCIS, women sometimes had real difficulty explaining what it was, how it was treated and how it related to invasive breast cancer. As one woman said, ‘Everybody’s heard of breast cancer but nobody has heard of DCIS’.
 
It helped if the diagnosis had been explained in terms that the woman could use when she told other people. Several women left copies of leaflets about DCIS with their relatives and friends to help them understand.
Telling Children
 
Women who had children living at home often found it hard to decide how and when to tell them. It was a good idea to inform teachers, who were invariably kind and thoughtful about how they handled the child at school.
 
One woman asked her breast care nurse for some information about talking to her children, who were aged ten and twelve. She followed the advice to be open and to use the word ‘cancer’ and was surprised to find that her children reacted almost exactly as predicted in the book she was given by the nurse. Her boys were aware of ‘plastic surgery’ but (like many others) associated it with celebrities such as Jordan and Michael Jackson.
A younger woman with DCIS tried to explain to her five-year-old that she was having her ‘breast taken off’ but thinks that she made several mistakes and misjudgements, including telling him that she would be ‘asleep’ when it would happen, which made him really upset. Another decided not to tell her four-year-old directly but thought it was important to be open and did tell her older child. Both children came to see her in hospital, which they found distressing at the time, but she thinks that they now seem very comfortable with her scar and prosthesis.
Telling older children can also be difficult. Teenagers can react in various ways – sometimes appearing nonchalant when they are told but secretly being very anxious and wanting to discuss it all with their friends, even if they are silent at home. One woman said she tried to avoid telling her student daughter until after exams but it all became too complicated when they found they were having to lie about hospital appointments during the school holidays.
 
A woman whose 23-year-old son has autism had to handle telling him particularly carefully because his father had died from cancer.
One woman had told her grown up daughter that she was going for further tests after a mammogram but had not told her 19-year-old student son. She describes telling her children as ‘the worst thing’.
Telling friends and colleagues
 
Telling friends and colleagues was usually a positive experience – friends rallied round and work colleagues (especially other women) could be very understanding and supportive. Several women said that they always tried to be as open as possible and that to behave in any other way was just too stressful.
 
Sometimes the people who the woman most wanted to tell were not to hand or were embroiled in their own problems. One woman said her partner was away and her best friend was not available so she went to see her sister, who she found helpful and understanding.
 
People may prefer to keep their work and personal life separate and use work as a distraction from their health worries. One woman said she’d told everyone at work that she was going for a routine mammogram but had joked about it because she had not expected there to be anything wrong. She later regretted having told so many people because they wanted to know if the results had been okay.
With hindsight, one woman wished that she had not told so many of her neighbours and acquaintances about her surgery. At the time, though, she needed help with child care and felt that she wanted, and needed, to explain why this was. Some women were a bit disappointed with individual neighbours, colleagues or acquaintances who did not seem to know what to say or how to react. Fortunately this was relatively rare and most women found that they benefitted from telling their families, colleagues and friends.

Last reviewed October 2013.

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