Jo – Interview 11
Jo was diagnosed with DCIS in 2007, aged 42, over two years after seeing doctors about a bleeding nipple when she was breast-feeding. She had a mastectomy.
Jo first suspected a problem when she was pregnant with her second child. She had had mastitis after her first child and, during her second pregnancy, had to express milk and noticed bleeding from her nipple. She was referred by her GP to a breast clinic, where she was told that the bleeding was pregnancy-related and nothing to worry about.
About two years later, when Jo was breast feeding, she noticed more bleeding from her nipple. She rang her GP, who told her not to worry because she had had this symptom before and had had it checked at a breast clinic. Jo said she felt she had been to a centre of excellence; and trusted the information she had been given.
Six months after phoning her GP, Jo again noticed bleeding from the nipple while she was breast-feeding. She visited the GP, a different doctor, and was referred again to the breast clinic, where she had a mammogram and other tests. Jo was diagnosed with high grade widespread DCIS and told that she would need a mastectomy.
Being a mother of two young children, one aged two and the other five, Jo’s overwhelming concern was for her children. Despite being shocked and concerned herself, she also had to arrange child-care quickly as she was scheduled for surgery three weeks after diagnosis.
Jo decided not to have reconstructive surgery because she felt that it was a long operation and she needed to be able to look after her children as soon after surgery as she could. A DIEP flap reconstruction, which involves creating a breast by taking skin and fat from the lower abdomen but without any muscle, was also unsuitable for her because she did not have enough tissue on her stomach.
Before surgery, Jo was anxious about having general anaesthetic and whether her children would be allowed to visit her in hospital. In hospital, she found it difficult to sleep because of the noise and, one day later, transferred to a private hospital where she felt she could recover better and quicker. She also had a lot of bladder pain and found it difficult to pass urine.
Jo said that, much more than her concerns about having a mastectomy, were her concerns about seeing her children grow up and recurrence. She was disappointed that she had not been invited for a mammogram after she had given birth and said that she was misdiagnosed. She was diagnosed with DCIS about two and a half years after a visit to a GP, a referral to a breast clinic, a phone call and another consultation with a GP, and a second referral to a breast clinic. She wonders if, had she been diagnosed during or shortly after pregnancy, whether she would have had to have a mastectomy at all. She said she was also disappointed with the nursing care she received.
Jo advises women to get any breast symptoms checked out as soon as possible and, if they have been told that nothing is wrong but are still concerned, to get a second opinion. She will now have yearly mammograms and felt concerned about having these.
Jo was interviewed for the Healthtalkonline website in 2008.