Bill – Interview 114
Was diagnosed with breast cancer in 2001. Had a mastectomy and lymph nodes removed, then chemotherapy, tamoxifen and Arimidex (which he later took with testosterone replacement, Nebido). He later developed itching in his other nipple and had a second mastectomy in 2002.
When Bill found a lump in 2001, he was immediately worried about what it might be. He had known a man who had died of breast cancer. He made an appointment at the first opportunity with the GP who referred him for tests. In the meantime, he began to experience itching in both nipples.
The core biopsy, which he found painful and caused extensive bruising, revealed that he had breast cancer. He initially felt relieved because they quickly made plans for treatment. He had a mastectomy as an inpatient on an oncology ward. On seeing his mastectomy scar, he was struck by how big it was and particularly by the loss of his nipple. After a recovery period of about a month, he began six sessions of chemotherapy, which made him more and more exhausted as time went on. He experienced some nausea but, on his sister’s advice (she is a midwife), he requested ondansetron which helped to quell the nausea. He disliked the way that steroids made him hyper immediately after his treatment and his mouth became quite sore and painful. He was hospitalised for an infection during his chemotherapy and he experienced a widespread rash at another stage. During the six months when he had been receiving active treatment, his life revolved around the hospital; when the chemotherapy finished he felt a sense of absolute abandonment.
He took tamoxifen for a while but found the side effects intolerable. He felt moody and angry and had extreme hot flushes. He then took Arimidex, at that time a relatively new drug. In March 2002 he experienced itching again in his remaining nipple and some swelling. He was advised to have a second mastectomy. He had not been offered reconstruction after his first mastectomy and this time he insisted on being referred to a plastic surgeon, which was greeted with some astonishment. This surgeon agreed to do something for him’ once his wound had healed, and later he had nipples tattooed onto his chest. He was pleased with the tattoos because they made him look the same he had used to look. During the waiting period however, for the first time, everything that had happened to him hit him like a brick’. The oncologist recognised that he was clinically depressed, and he was referred to a psychiatrist who helped him to overcome his depression.
Following his illness and treatment, he experienced a wide range of health problems. He developed osteoporosis, his testosterone levels became very low and his libido was affected, he had pernicious anaemia and type 2 diabetes, and developed an enlarged prostate. Prior to his breast cancer his only health problem had been recurrent kidney stones.
Time and time again, since his diagnosis with breast cancer, Bill has been confronted by the assumption that breast cancer patients are all female. The leaflets he was given were written for women; he felt they were useless or offensive for older women or men with breast cancer. The overlooking of men and the inappropriate images of women made him feel like he had to crusade’ for changes to prevent unnecessary grief to him and other men with breast cancer. When he went to the pharmacy for his tamoxifen prescription he was told the medicine was only for women. When he called for an appointment with the plastic surgeon, the secretary assumed he was looking for an appointment for his wife. Other people’s reactions to his diagnosis have sometimes made him think that they think he is a bit of a freak or perhaps not a man’. He has actively campaigned for changes in treatment for, and attitudes towards, breast cancer in men; he doesn’t want other men to feel embarrassed about going to a breast clinic and strongly believes that men and women should receive the same treatment opportunities. Throughout his illness he has had very good family support, particularly from his wife.