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Ductal carcinoma in situ - Patient Narratives (c) www.healthtalkonline.org
 
1. What is ductal carcinoma in situ (DCIS)? 
Image A doctor explains what DCIS is.
A doctor explains why DCIS is treated by either wide local excision or mastectomy.
A doctor explains more about the different grades of DCIS.
Sue had not heard of DCIS before her own diagnosis.
Pam had only come across DCIS because her mother was diagnosed with it several years earlier.
Ann wondered if shed had symptoms but had pushed them to the back of her mind. She thought shed have a lump if there was anything wrong.
2. Discovery and diagnosis: Feelings about the diagnosis 
Image
 
Image The word cancer frightened Jacky. She knew nothing about DCIS and desperately wanted to understand what it was.
Image Di had been fit and healthy and was shocked to hear she would need a mastectomy for a precancerous condition. She was being given lots of information but could hardly take it all in.
Image Jane reacted by looking for more information and found it reassuring. She advises other women not to spend too much time looking for information on the internet because it can be worrying
Image Beverley feared the worst because the doctor found a lump when she was recalled after a routine mammogram. She was relieved to hear hear that, unusually for a lump, it was non-invasive.
Image Elizabeth, a nurse, chose not to tell many people because she said the word cancer frightens and upsets people. Work helped her cope because it kept her busy
Image Jane said the doctor explained what DCIS was so well and calmly, she thought it couldnt be very serious. She wondered if there was any need to tell her husband.
Image Jos main concern was her young children. She was breast-feeding and had to wean her baby off breast milk.
Image Sandy said she never shed a tear when she was diagnosed. She wanted to get on with the treatment. In some ways, it was harder for her best friend.
Image Beverley felt depressed after surgery, when she had time to think about everything shed been through. Going back to work helped
Image After surgery, Agnes felt a sense of loss because part of her breast had been removed.
Image Eileen felt embarrassed and guilty. Although invasive breast cancer is more serious than DCIS, she still had a mastectomy and found it hard to feel lucky she only had DCIS.
Image Sandra feels that it is sometimes harder to be diagnosed with DCIS than invasive breast cancer, especially for women who need a mastectomy.
Image A doctor talks about DCIS and recurrence.
3. Treatments and their impacts: Feelings about having a wide local excision 
Image Sue felt positive about having a wide local excision because of what her doctor had told her and what shed read on the internet.
Image Carols doctor reassured her that a mastectomy was unnecessary for the small area of DCIS she had.
Image After talking to the nurse and doing her own research, Agnes chose a wide local excision. She felt a mastectomy was too drastic for a non-invasive condition
Image Hazel declined to take part in a trial because she didnt have the information she needed. She felt doctors didnt know enough about the best way to treat DCIS.
4. Treatments and their impacts: Feelings about having a mastectomy 
Image Ann fainted when doctors told her shed need a mastectomy. Shed expected nothing to be wrong and was extremely shocked.
Image Jane accepted that a mastectomy would be the best treatment for her because her DCIS was so widespread. Her main concern was having it all removed.
Image Patricia knew straight away that she would prefer a mastectomy and was pleased with how the operation went.
Image Patricia decided to have her remaining breast removed because she wanted to reduce her chances of getting breast cancer again. She would also feel more balanced instead of lop-sided.
Image Maisie had both her breasts removed and reconstructed at the same time. She was happy with this decision because she was concerned to have all the cancer removed.
Image Trish agreed with the doctors advice but, later, felt upset about having a mastectomy and really didnt want one.
Image Sandra was glad she could have an immediate reconstruction and felt lucky the DCIS had been picked up early.
Image Linda felt shocked and numb at the thought of having a mastectomy. She felt she had no choice and no control over the decision.
Image Eileen was shocked to hear shed need a mastectomy for DCIS and to learn that DCIS is a complex condition that doctors dont yet fully understand.
Image Di couldnt believe she needed a mastectomy for a precancerous condition that might never develop. Doctors were unable to answer the questions she had until after surgery.
Image A doctor explains why a mastectomy is recommended for some women with DCIS.
Image Felicity had two excisions but, because there were no clear margins, she had a mastectomy shortly afterwards. Talking to another woman with DCIS helped her make her decision.
Image Gillian would have liked more information about the surgical options from a health professional. After talking to the doctor about how another excision would look, she opted for a mastectomy.
Image Liz felt that a mastectomy would be the best option for her because she had widespread high-grade DCIS. She didnt want several excisions and was happy with her doctors recommendation.
Image Janet was shocked when she had a recurrence of DCIS. She had a mastectomy and was pleased to hear there was still no invasive breast cancer.