All.Can Patient Survey

39 Julie * (Belgium) Two weeks after noticing a lump in my breast, I saw my GP and was referred for a mammogram. They told me it was probably benign but suggested I get it removed just in case. I had a biopsy, and the people at the research centre said everything looked OK and that I shouldn’t be too worried about it – so I felt really reassured. When I got the results a few weeks later from my gynaecologist, he told me they’d found some bad cells in my breast. I didn’t know what that meant exactly, but I knew there was something wrong. When I got emotional, he asked, ‘Didn’t you expect this?’ The way he gave the diagnosis was very hard for me; I found it unprofessional and it felt like he didn’t take me seriously. The breast care nurse was at the appointment and, after the conversation with the gynaecologist, she had all the time in the world to answer questions. She was very understanding, gave us a lot of information and made me feel it was OK to be emotional. It still wasn’t clear to me whether I had cancer or not, so the nurse had to tell me. Throughout my cancer treatment, the breast care nurses have always been a great support. I wasn’t really involved in discussing my treatment plan. They never gave me the option to choose an alternative location or seek a second opinion. Now, I know that I actually had a choice about certain things, but at the time I just trusted the doctors. It gave me a good feeling that my treatment plan was designed by a team of doctors. I’ve had various treatments: mastectomy, tissue expansion, radiation, anti-hormonal therapy, chemotherapy and a breast reconstruction. If I had the choice now, I wouldn’t have had a breast reconstruction. I wasn’t well informed about the rehabilitation. It’s been very hard. I have a very tight tummy now, which makes walking difficult and causes heavy back pain. They also removed my lymph nodes, which gave me a very big arm. All these things cause me a lot of stress. My illness had a huge effect on my marriage, which ended in a divorce. The emotional impact was huge. But I’m very happy with the psychological support I received from the breast care nurses and my friends. I practised mindfulness for cancer patients and my kids got support from the hospital as well. I had so many questions, but they all needed to be answered by different doctors. It would have been nice to have an appointment with all the doctors at once, so I could ask all my questions at the same time. It would be less time-consuming and would have cost me less energy – energy I didn’t have. I would like to tell other patients that you have a choice about certain treatments. If you make your own decisions, you will probably feel a lot more in control – and that will make you feel stronger. * Names and some other identifying elements have been changed to protect patients’ anonymity. Patient stories Patient insights on cancer care: opportunities for improving efficiency