Breast Cancer in men
Experiences as a man in various breast cancer treatment settings
Breast cancer in men is rare.There are about 390 men diagnosed each year in the UK. This compares to around 54,800 cases in women. (Cancer Research UK November 2016). Many people do not know that men can get breast cancer (see 'Other people’s reactions'). In most cases, the men that we interviewed were the only male breast cancer patient to be treated at their hospital. It is perhaps not surprising then that many of the men felt that they had ‘stood out’ in the hospital when they were having tests or treatment for their breast cancer. It was very common for them to come across the assumption that, as a man, they ‘couldn’t’ also be a breast cancer patient. Some men felt embarrassed whilst they were waiting to be seen in the breast clinic and very often medical staff assumed that it must be their wife who was attending the breast clinic as a patient.
BT felt embarrassed when he had to wait for his biopsy in a dressing gown, surrounded by female patients.
BT felt embarrassed when he had to wait for his biopsy in a dressing gown, surrounded by female patients.
I went to [name of hospital] for a biopsy, and that were embarrassing.
Dan had been referred to as 'Mrs' rather than 'Mr' when he was being called by staff who didn't know him in the hospital.
Dan had been referred to as 'Mrs' rather than 'Mr' when he was being called by staff who didn't know him in the hospital.
I’ve got one other problem at hospital. They keep calling me Mrs – when they call Mrs [surname] I say, “Not Mrs, Mr [surname],” you see? Everybody, they think that it will be a she. I said, “No, it’s a he.”
RG felt a bit exposed and like a 'sore thumb' when he was in the chemotherapy suite. Several times people had assumed that his wife, not him, was the patient.
RG felt a bit exposed and like a 'sore thumb' when he was in the chemotherapy suite. Several times people had assumed that his wife, not him, was the patient.
I mean we’ve been several times to, you know to the hospital and on several occasions, my wife’s been addressed as being the patient. You know, by doctors as well. And of course it’s very female orientated, when you go into the, when you go into the, you know the waiting areas and such like, it’s all in pink. And you feel, you know when you, when your name’s called out, crikey, you know it’s something different, you know. So it’s a little bit, feel a bit self-conscious about that I must admit. I don’t know whether other men do but-. But I think I suppose it’s the nature of the beast, you know that more women unfortunately get breast cancer. But then men do as well, so [laughs].
Tom felt that other patients were watching him when he was called in to his appointment.
Tom felt that other patients were watching him when he was called in to his appointment.
I mean, when I used to go to the hospital to check it was all women and it’s embarrassing sat with a load of women and they’re all going what’s he doing, you know what I mean? And it was all women getting checked up, you know what I mean? It’s like when I went to go into the hospital cos I was the only man there and it was full of women to go in to get operated on. And when they called my name out... they wondered why I was coming, yeah. So I don’t think a lot of women have seen men with it. Cos they all think it’s women.
A pharmacist told Bill that tamoxifen was 'only for women'. When he phoned for an appointment to discuss reconstructive surgery the secretary assumed he was phoning on his wife's behalf.
A pharmacist told Bill that tamoxifen was 'only for women'. When he phoned for an appointment to discuss reconstructive surgery the secretary assumed he was phoning on his wife's behalf.
And was he or she understanding? The breast care nurse, were you able to phone her anytime?
An airy… this assumption that men first of all didn’t get breast cancer, and secondly they wouldn’t bother at all with the reconstruction and…
So, there was just no thought at all that you might be phoning on your own behalf?
Just no thought that I might be the person looking for treatment. Anyway, I made the lady aware that it wasn’t my wife I was talking about, it was me and I was the very first man… the very first man, that had been referred, or asked to be referred to a plastic surgeon after breast cancer treatment.
Robert described treatment for breast cancer in men as being on the 'coat tails of the treatment for female breast cancer'.
Robert described treatment for breast cancer in men as being on the 'coat tails of the treatment for female breast cancer'.
Some women when they go along for treatment, become involved in clinical trials or different things like that but...?
When David went along for his chemotherapy he heard other patients talking about being on drug trials. When he put his name forward for a trial he was told they didn't want men.
When David went along for his chemotherapy he heard other patients talking about being on drug trials. When he put his name forward for a trial he was told they didn't want men.
I’m sat in the chemotherapy room, going back to the chemo days now, but we’re in a room where there were maybe, you know, eight to twelve people and obviously all women cos they were all breast treatment on the same day, and you listen to them talking. “Oh, what kind of trial are you on?” “Oh, I’m on this trial” and “oh, I’m on this trial.” “Oh, I’m not having radiotherapy, I’m just trying this chemo.” “I ain’t had an operation.” I’m going hold on a minute, what’s going on here? I were just told that I would be having a full operation, full mastectomy, I would be on chemotherapy and I would be on radiation treatment. There were no mentions of trials or what you want for this and what you want for that. I said, “What’s all these trials?” “Oh, well, we were given the choice”. I thought oh, weren’t a choice for me. I were just told. Why not a choice for a man? I’ve no idea. When I started asking, “oh, well, there’s no trials for men because there ain’t enough men get it”, simple as, and it’s down to cost, like everything’s down to cost, so… you can apply for these trials if you want, so obviously you’re recovering, they say you can’t do anything, so you’re trawling the internet looking for info and you’re finding all these trials, and I put my name down for trials. Trial here, trial there, only to get replies… oh, we’re only looking for pre-menopausal women or we’re only looking… I said, well, I’ll never had a menopause in my life so I’m ideal obviously. “Oh, but you’re a man, we don’t want men”. Simple as, you know? So nobody wanted a man.
Stuart and his wife were really angry and upset when they were told that he didn't 'fit within the criteria' for Herceptin because he was a man.
Stuart and his wife were really angry and upset when they were told that he didn't 'fit within the criteria' for Herceptin because he was a man.
All within this period of time as well, I should have said that within… from seeing my oncologist going forward, because he had mentioned about Herceptin, I was trying to, be put forward for this, and we kept coming across sort of barriers, the first one being my private healthcare company who wouldn’t pay for it and, they said it didn’t come within their criteria of treatment, and that they said it was preventative treatment. And I said well surely every drug’s a preventative treatment, really? But there was a lot of sort of to-ing and fro-ing between myself and my oncologist, writing letters to the insurance company and this sort of thing and this went on for quite a while and they said no and then we sort of went back to them again and sort of… a bit more evidence, if you like, and they still said no and we even got Anne Widdecombe involved, which is our local MP, and this sort of thing. So this is why there was a lot of press involved and… there was bits in the paper and did various interviews for the South East News and this sort of thing to sort of raise awareness of the fact that I couldn’t get this treatment as well as raise awareness for the fact that men could get breast cancer as well, so it was good in that respect. The next step after the radiotherapy would have, or should have been the Herceptin sort of as soon as possible, but between when I had finished, which was February 2006 that I finished my radiotherapy, I didn’t actually start Herceptin until May.
So there was a sort of three-month gap, and between that time it was all sort of rigmarole of trying to get the insurance company to pay for it and then they said no, and then we went, then my oncologist went to try and get it through the NHS and of course at that stage as well it still wasn’t licensed and there was a lot of other people trying to get it and they were saying about a postcode lottery and this sort of thing, and the first sort of time my oncologist tried to get it, I remember him saying “well, we’ve got a criteria that we can give it in the hospital, you know, you fit within that, you know, got HR2 positive cancer, blah, blah, blah.”So we thought great, you know? Shouldn’t be a problem at all, and then it turned out that he’d put me forward for it and then he got a rejection from sort of higher up within the hospital to say that I didn’t actually fit within the criteria, and I thought, well, you said that we did and he said “well, no, it’s only, the money’s apparently been put aside for women” and I can remember when he said that, [my wife] was with me at the time in hospital and said… you know, this can’t be right, you know? Surely… if it’s there, it should be for everybody and not just because it says women. And we went away from that feeling really angry and upset and obviously it wasn’t the oncologist’s fault, cos he was doing his job for us and he was just told sort of from higher up.
Robert felt he had 'tiptop' treatment with everyone fussing over him. He was the only man at his hospital to be treated for breast cancer that year.
Robert felt he had 'tiptop' treatment with everyone fussing over him. He was the only man at his hospital to be treated for breast cancer that year.
So when you went into hospital to have the operation did you go into a general surgery ward or… ?
Ben thought he perhaps received better service as a 'lone soldier' amongst other female patients being treated for breast cancer.
Ben thought he perhaps received better service as a 'lone soldier' amongst other female patients being treated for breast cancer.
One of the things I’ve found recently is I’ve… because when I go to the clinic, the [cancer unit] is that they, there’s about 200 women there in the clinic and there’s me, and I get called and sort of, the first time we went, they thought it was my wife that was getting called in, and now of course they know me, that… that it’s me, so…
Although Steve had felt 'second-class' when reading information about breast cancer, he had very good treatment in hospital and was a 'bit of a celebrity' on the ward.
Although Steve had felt 'second-class' when reading information about breast cancer, he had very good treatment in hospital and was a 'bit of a celebrity' on the ward.
I’ve got to say it – the information I had from the hospital was useless. Absolutely useless. Cos it was all female-orientated.
Last reviewed June 2017.
Last updated June 2017.
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