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Bill - Interview 114

Age at interview: 54
Age at diagnosis: 46
Brief Outline: 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.
Background: Bill is a retired education guidance advisor. He is married and has 3 adult children. Ethnic Background: White Scottish.

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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.

 

 

Bill has developed diabetes, anaemia, bladder and bone problems and blames them all on his...

Bill has developed diabetes, anaemia, bladder and bone problems and blames them all on his...

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No, I mean, I’ve very much coming to terms… I’ve come to terms with it, I’m living with it, it’s not… it’s just a path that many people have to take. I mean, I’m not unique and although I feel a bit sorry for myself now and again, but here I went from a position of going to hospital after accidents or because of kidney stones, taking no medication except related to them, to having fifteen things on a repeat prescription. All caused by the cancer, not specifically caused by the cancer but caused by the treatment for the cancer.
 
Yeah, the domino effect all the way?
 
It’s the continuing grief from the treatment that people tend to forget. They think, oh no, they’ve cut the cancer out of him, they’ve given him chemotherapy, that’ll be him, fine, and it’s not true. The number of people who must be like me and have constant and continuing problems caused by treatment for cancer…
 
Yeah, physical consequences and the emotional consequences as well… yeah.
 
Yeah, it must be a huge number, or a high number of people.
 
Yeah.
 
But you have to be… I’m very aware that all my medical problems now can be directly related back to the cancer treatment.
 
Yeah.
 
And I must not be unique in that sense.
 
And do you ever… would you every say you felt fit and well these days or…?
 
No.
 
No. So you really feel like you’re living with the legacy of the illness.
 
I would always say I’ve never felt well for years, because I don’t feel well all the time.
 
And that’s a real contrast to how you were before.
 
But it’s not something that I go on and on about. You come here to visit me today after over the last few weeks I’ve had a whole barrage of blood tests indicating things that are high and low, and I’ve had a whole load of symptoms which have worsened. I’m very sore in my bones and can’t sleep. I have serious cramps in my leg. I’m tired, depressed. I feel a bit depressed because I know when…
 
You recognise that feeling now after…
 

So I had that feeling that this depression is returning, and they tell me I have low calcium. One day, the next time I have low phosphate, and I’m thinking, well, these symptoms can all be related to that, because I don’t hang about, I do some reading up.  

 

Bill succeeded in persuading several cancer charities to produce separate information for men...

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Bill succeeded in persuading several cancer charities to produce separate information for men...

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Actually, we haven’t talked about my work to get men the same treatment as women, and in the midst of all this physical and mental grief I had, I still took note of what I wanted to do. So I started bombarding cancer charities with requests to make the information about breast cancer in men much more suitable to be given to men. In fact, no, to make information available…
 
For men, yeah.
 
…for men when it wasn’t, and not to be… I wasn’t going to be palmed off by saying, well there is a wee sentence in the beginning of this twenty-page book or booklet that says, by the way, you know, at the very end of it, by the way, men sometimes get breast cancer. That was just not useful, so I wanted a separate, absolutely discrete information for men with breast cancer. And the second thing was that I would never ever want to be described as having male breast cancer, because women are not described as having female breast cancer. I would be happy if they were…
 
Yeah.
 
… consistent…
 
Yeah.
 
... but they’re not consistent. Men have male breast cancer and women…
 
Have breast cancer.
 
… have breast cancer. and it’s not… for me, it’s one of my biggest annoyances.
 
Yes, I remember we talked about…
 
It’s absolutely not… and that was top of my list to get this stopped. And second of course, was to… we have a specific and separate information for men with breast cancer. Thirdly was to update all the hospital information and especially to do with physiotherapy and to make it much more realistic and much more appropriate for the audience that would be reading it, men or women. So Breast Cancer Care, of course, being a big major charity for breast cancer sufferers… I did persuade them to write a separate resource for men with breast cancer. I did persuade them to stop referring to it as male breast cancer. I did the same with Macmillan, I did the same with Cancer Relief or Cancer Care UK, the one that’s merged with…
 
Cancer Research UK?
 
Cancerbackup has merged with Macmillan.
 
Yeah. Backup.
 

All the major charities except one, Cancer Research UK, have stopped referring to male breast cancer, or if they mention male breast cancer, it’s in the same sentence as mentioning female breast cancer, so I’m quite happy with that if they’re consistent, but I’m not happy to have my disease, or the disease I had, called male breast cancer.  

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