5 years since diagnosis
Age at interview: 59
May-Lie (59 years old) has a partner who has two children. She worked as a secretary but is currently retired.
May-Lie was diagnosed in 2010. A lump was found in her breast during a medical visit to her GP who advised her to wait for the results of the mammography. May-Lie decided to consult with her gynecologist as well and he asked her to follow-up with more tests at the hospital. Within a week, May-Lie had a biopsy and was told that the lump was cancerous. May-Lie received different signals at this time; the gynecologist had told her it was urgent but other professionals tried to reassure her. She was worried, but hopeful that things move quickly as soon as she met the surgeon. The waiting period of 19 days to see the surgeon was really hard for May-Lie; she slept little and was worried. She tried to reassure herself by telling herself that it couldn’t be too bad if they let her wait that long. By the time she did meet the surgeon she was extremely nervous and had a panic attack during the pre-surgical visit. Now she knows that this was a panic attack, but at the time she did not know what was happening to her. Her surgeon thought she was being aggressive. On the day of her scheduled lumpectomy, May-Lie was asked to present herself at the hospital at 7:00 in the morning. She expected to be operated on right away and by the time she had her operation at 13:30 she, again, had become very nervous. Unfortunately her margins were not clear and what May-Lie believed was going to be one surgery for a lumpectomy became a series of three surgeries in 3 months (another lumpectomy followed by a mastectomy). These unexpected events had an enormous effect on May-Lie; she became very anxious and experienced several panic attacks. Before her third surgery she felt unable to deal with it anymore and she realized later that she had hardly remembered anything that was said when she met the surgeon. The experience with the surgeon had been so bad that May-Lie decided to change hospitals for her chemotherapy, even when this meant that she would have to travel more. In her new hospital May-Lie had a totally different experience; she was better informed and was able to interact well with the health professionals. The fact that the healthcare professionals worked together as a team made a big difference to May-Lie and she noticed that everybody was well informed about her illness status. May-Lie appreciated that she was able to call an oncologist on weekends with questions about the side effects of the chemotherapy. May-Lie, who is in remission at this point, finds it hard to accept her scars from the mastectomy. Neither May-Lie nor her partner are able look at the scars or touch them. The level of intimacy in their relationship has reduced significantly since the operations. May-Lie finds great support with her occupational therapist who provides good support and listens well to her concerns.
- Surgery -May-LieHaving to undergo a second surgery was a big shock for May-Lie.
- Perspectives on treatment pathways -May-LieA test to measure the tumour markers caused so much stress that May-Lie asked for it to stop.
- Understanding the diagnosis -May-LieMay-Lie emphasized the importance of how you feel during the treatments rather than the importance of understanding the exact diagnosis.
- Sexuality, femininity and intimacy -May-LieMay-Lie struggled with the impact of breast cancer on her relationship as did her partner.
- Physical activity and diet changes -May-LieMay-Lie found exercise to be a great way to relieve stress and tension through her treatment.
- Follow-up care and the risk of recurrence -May-LieMay-Lie wondered whether her cancer had returned when she had pain in her bones. She had a friend who had died in this way.