Bill - Interview 23

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.

More about me...

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.

 

When Bill's wife noticed a lump on his chest, he went to his GP. He felt anxious waiting to hear about his hospital referral, particularly when both nipples started feeling itchy.

 I remember it very vividly of course. It was the weekend of the Mayday holiday and, it wasn’t me that found the lump it was my wife who… she ran her hand over my chest and found this lump. And I always remember being immediately worried about it, because I hadn’t noticed it of course. So the doctor was closed on Monday. And I went into work on Tuesday and phoned the doctor for an appointment, and went from work on that Tuesday to the doctor. And he examined me and did indeed find a lump and he didn’t seem too worried about it. And he said he would refer me to the hospital. That was fine. I left, the doctor, I didn’t go back to work I don’t think that day. Anyway the next day I spoke to a lady who had breast cancer, and asked about her experience and she told me. And eh, she said that things were really good in [area] because they did this one step clinic for people with lumps on their chest. But that- turned out only to be for women, actually. And anyway, in the interim between me going to the hospital and finding out about this lump, I became really worried about it, and I have to say in my mind it was growing all the time. And then more symptoms appeared, because I began to have this real itch in both nipples. And this lump just to the inside of one. And, I went back to the doctor, I saw a different person, who did tell me I’d been referred to the surgical clinic at the hospital, and, she told me she thought I might better stay off work, in the interim.

Bill describes having his core biopsy and the 'wonderful' bruise that he developed after the test.

The worst thing though was, that day they told me I had cancer, they took a core biopsy, and they had given me some local anaesthetic and then taken this core biopsy, and the bruising was just so extensive and so horribly sore. It was absolutely wonderful bruise if a bruise could be described as wonderful, this was a wonderful bruise, all over this side of my chest. And the pain! And they had put this big pressure bandage on it. But, I’d often thought I could get to the front of a queue if I just exposed this bruise to people. And- but I remember that as the most painful thing actually.

Bill talked about waking up after his mastectomy feeling very cold and in pain. The morphine that he took made him feel nauseous.

But the next thing, I do remember going to the anaesthetist, speaking with me and the cannula in my hand was already in my hand, and the next thing I remember waking up and I was absolutely freezing cold, I was very cold, in the recovery room. And I was aware of a big pressure bandage across my chest. And they put a, one of these- obviously a silver foil thing on me, and blew a heater into me to heat me up. And then they took me, once I was over that part, they took me back to the oncology unit in a single room, and hooked me up to different machines, and my arm seemed full of things. And I dozed in and out, people came to see me and I can’t remember much about that. And when I did come to a bit, they explained to me that I had this pain, pump thing, pain relief that I- if I was in pain then I could press this pump.

 

And I was in pain and I pressed the pump and it didn’t seem to work. And I told her that, and of course all this plumbing in my hand and I remember it was left hand, something was wrong and it wasn’t working anyway. So they had to realign all this stuff. And then it did work, but for me the morphine was… relief from the pain but it made me very nauseous. And I have this dislike of vomiting, so I resisted vomiting for a long time, and then I decided I wasn’t going to have any more of the morphine. And I asked them to take it away then. Because the threat of vomiting was more horrible to me than the pain I think.

Bill said that his drains were removed several days after his surgery. He describes it as a 'very strange feeling'.

Anyway, the- the drains in my chest and arm began to run clear, after four days, Tuesday, Wednesday, Thursday, Friday… Saturday still draining a bit, and they said to me that I would be allowed home on the Sunday if the drains remained clear for that day. So in fact they did remain clear and they- I always remember, it was very strange feeling, having the drains taken away, cause you could feel them coming out. Ooh! Anyway, they took the drains out and gave me another dressing, put another dressing on the scar, and sent me home.

Bill described how he felt the first time he saw his chest with only one nipple. He was annoyed about losing his nipple even though it had been the only option he had.

And, after a few days, I think the operation was on the Tuesday, and I had drains in of course, two drains, one in my chest and one under my arm. The bandage had loosened a bit and I became very nosy and managed to ease it off mostly and, was just a huge scar right across my chest, which ended under my arm.

 

So was that a shock to see that or-?

 

I think I thought it was very... straight. The scar. I just seemed to miss my nipple, which was a huge miss, when you looked at one side and saw your nipple and you looked at the other one and it wasn’t there. And it seemed kind of stretched, the skin you know. And this big scar, big, big scar, which was very neat, that was the word. And I wasn’t, annoyed about the scar, I think I was more annoyed about the nipple disappearing.

 

Again had they explained in advance that that might happen or-?

 

Oh yes, that was the only option really, especially for men, who don’t have much breast tissue.

After Bill had a second mastectomy he insisted that he see a plastic surgeon. After the wounds had healed, he had two nipple tattoos which made him feel 'reborn' as a man.

Why did they recommend that you went to a plastic surgeon then, this second time? Did they offer you some kind of reconstruction, on the second occasion but not the first, or-?

 

They had never talked about reconstruction the first time, and I had insisted on being referred to a plastic surgeon. After the first time, to see what could be done. And that was greeted with some astonishment, I remember. And-

 

Again because you were a man asking about it?

 

Because I was a man, and I was aware that women were offered reconstructive surgery at the point of initial surgery or they could delay it. But they were offered reconstructive surgery. So I felt like Oliver Twist almost, asking for more. But I was determined then that men should be treated absolutely the same as women. And they referred me to- no, they didn’t refer me to a plastic surgeon, they gave me the telephone number of the plastic surgeon, to make an appointment.

 

So you had to do that yourself?

 

I did.

 

I phoned the number and the person said, “Oh, you’ll have to hang on until I get my diary, [name]”. I said, “Okay”. So, she came back. “Okay, mister…” I remember exactly, she said, “Okay [name] I’ve got the diary now. What’s your wife’s name?” And… that was obviously as bad as the pharmacist.

 

Yeah, it must…

 

And anyway it was 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 and this is of course before I found out the symptoms returning to the other side and by that time, they had decided a second mastectomy was best and because I had spoken to the plastic surgeon, she said she would do it…

 

Right.

 

… and that’s, that’s how it came about.

 

Right.

 

So, after the second mastectomy of course I was… didn’t have anything, no nipples so there was a serious lack…

 

That must feel very strange?

 

Well, it does and it kind of looked very neat but there is definitely something missing and I did miss them and I do. Anyway, after that treatment, after that surgery, the plastic surgeon said that she would do something for me but not until the wound had healed and calmed down, and then she would see what she would do and I said, that’s fine, but in the interim, before she did anything, I became very depressed.

Bill found chemotherapy horrible but felt a sense of abandonment once it was over, although he did still have follow-up appointments and contact with the breast care nurse.

So did you make the full six courses then?

 

I did make it to the last one, I always remember they couldn’t find a vein. They stuck my hand in a bucket of water to try and find one. Of course I think they just died as soon as a needle came towards it, and they couldn’t sue this arm, right arm, with, veins were lovely, but they couldn’t touch them. And I remember feeling that last time was, it was – almost nauseous thinking about it. The final one was the worst. There was no feeling of relief, I’m not coming back for any more of this, it was just awful and I came home.

 

That was everything about it? The extreme exhaustion and again the effect on your mouth, and the nausea and everything?

 

Yeah, it was just horrible. Anyway, what was more horrible, in my remembrance, is not the chemotherapy because if someone asked me what was the worst time, I would say two things, the worst thing was that core biopsy they took which was so painful, and the next thing was this feeling of absolute abandonment, after the last chemotherapy treatment. There was nothing.

 

So they didn’t- so you didn’t have any follow-up?

 

Oh yes of course I did.

 

You did.

 

But my whole life had been for six months, at least, been revolving round doctors, nurses, hospitals, medicine, treatments, and then nothing.

 

Yeah.

 

It was such a feeling of being abandoned. Not that they would’ve thought that that was a bad thing, but I just felt kind of bad. Or kind of abandoned really. I did have follow-up appointments with the oncologist, and of course I spoke with the breast care nurse.

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?

 

Yes. I had easy access to her.

 

Uh-huh. And did she have any experience of having men as patients with breast cancer?

 

No. I was the first man for many people. In fact, my GP at the time retired during my treatment, and in all his time I was the very first man he had ever seen with breast cancer. So it was a very ra… well it is a very rare thing. And, anyway, I returned to the oncologist with, for some more follow up treatment, The gold standard treatment for oestrogen receptor positive tumours was tamoxifen, and she prescribed that for me.

 

And how long did she prescribe that for?

 

Well, not long.

 

Right, okay.

 

There’s a story.

 

Okay.

 

In fact it’s very funny, I remember going to this pharmacy to get my prescription. And I handed the prescription in to get the pills, and it was a local pharmacist who came, and the shop’s very busy and it’s very small, pharmacy. And she came through and told me that this medicine was only for women.

 

Did she do that she do that in a public part of the pharmacy?

 

She did. And I always remember, she didn’t do it, in a bad- well I suppose it wasn’t very nice to do it in public. But, I remember joking with her and saying, “It’s okay I’ll wear my frock the next time. But give me the medicine”. So I took the medicine, but there were such horrendous, horrendous side effects for me, that I rebelled against taking it.

 

Why did they recommend that you went to a plastic surgeon then, this second time? Did they offer you some kind of reconstruction, on the second occasion but not the first, or-?

 

They had never talked about reconstruction the first time, and I had insisted on being referred to a plastic surgeon.

 

After the-

 

After the first time, to see what could be done. And that was greeted with some astonishment, I remember. And-

 

Again because you were a man asking about it?

 

Because I was a man, and I was aware that women were offered reconstructive surgery at the point of initial surgery or they could delay it. But they were offered reconstructive surgery. So I felt like Oliver Twist almost, asking for more. But I was determined then that men should be treated absolutely the same as women. And they referred me to- no, they didn’t refer me to a plastic surgeon, they gave me the telephone number of the plastic surgeon, to make an appointment.

 

So you had to do that yourself?

 

I did.

 

Right.

 

And I phoned- she was based at [name of] Hospital. And, I telephoned to make an appointment to see her. And the person who looked after her diary, I always remember that part.

 

I phoned the number and the person said, “Oh, you’ll have to hang on until I get my diary, [name]”. I said, “Okay”. So, she came back. “Okay, mister…” I remember exactly, she said, “Okay [name] I’ve got the diary now. What’s your wife’s name?” And… that was almost as bad as the pharmacist.

 

Yeah, it must…

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.

 

Bill 'bombarded' different organisations to produce information for men with breast cancer. He thought a lot of images used were even inappropriate for many women with breast cancer.

And from the time they discharged me from the hospital, I was very aware that all the leaflets and stuff they had given me, the physiotherapist had given me lots of leaflets that had encouraged me to move my arm and to get the mobility back in this arm and re- everything, that was written in these leaflets was for women. And I had them, they had given me them. And I remember thinking that, this is very odd, you know. But I could take what was important or what was useful for me, from these leaflets.

 

It must have been difficult to read that and feel they so much weren’t written for you, in many ways?

 

Yes it was. And that was one thing I immediately- I remember writing immediately, I said, this has to change, and I’m going to be the one that would change it. Because these leaflets are absolutely no use for me. And, no they were of some use. But they would be no use for the majority of men who got breast cancer, because the majority of men who get breast cancer are elderly men, with elderly partners of wives, or whoever was looking after them, and they would not allow them to read- I didn’t think they would have allowed them to read the leaflets. The women may have read them first and decided well, this is not suitable material for a man, and they would be discarded and thrown away.

 

So you think the wives of these older men would’ve read those leaflets and put them-?

 

Yeah. They would’ve put them to the side, because they’re of a generation where, breasts for women are ooh, you don’t talk about that. And you don’t talk about breast cancer, and you definitely don’t talk about the effects of breast cancer and what would happen to you, in terms of everything to do with sexuality and things, which was written for women.

 

So were the leaflets quite detailed about those-

 

Yes, they were.

 

And did they acknowledge that at all as they were giving it to you, did they show any awareness of the fact that the leaflets were inappropriate in many ways?

 

Well no, and- no they didn’t. It was only after the fact, that I began to think that it was really quite inappropriate to give me this. And not- although I did use to word “careless” sometimes, they may not have been careless because that was the only thing they gave- they could give me. There was nothing else they could give me. But I was determined that, it was most inappropriate, it was carelessly given to me, and things had to change. And I needed my- bit of a crusade to do that.

 

By that time of course I had found out that eighty percent of the women who get breast cancer were over fifty, and looked nothing like this twenty year old gorgeous looking physiotherapist, prancing about in these pictures. And I thought to myself well that’s almost inappropriate to give to women, because you want it to be real, and it would be much more real if they had used a real breast cancer patient, in the majority age group of the women who get it, rather than a nice looking young woman (laughs) ha! So, I was annoyed at that, and they told me in this leaflet that, I shouldn’t for example, do the washing up. They told me that I would be able to do up a back fastening bra in three weeks time, if I continued to do these exercises. They were just full of all these things (laughing) to do with women, which were- they told me I should brush my hair a hundred times each evening, because the exercise of doing that was useful for the mobility of the arm. But if they had given this leaflet to men, elderly men, many of whom are bald, then the usefulness of telling them to do that-

 

 

Bill warned his teenage sons before he went to hospital to a have his lump investigated that it might be bad news. He was already very well aware that men could get breast cancer.

Fifteen, thirteen and ten [son’s ages]. So, when I told them, I did tell them before I went to the hospital that I had found this lump in my chest and was kind of worrying about it, it might be bad news, and they were okay with finding out that it was a cancer. And I told them, because I knew of course men could get breast cancer, that was the other thing of course, many men don’t. Indeed many women don’t. But I had a friend who had died from breast cancer, years before, I always remembered that. And I was aware that men could get breast cancer. 

Bill is upset and annoyed about the inconsistency in the way people talk about breast cancer in men and women. He has been active in trying to change the language that is used.

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 consistent…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?

 

Cancer Bacup has merged with Macmillan.

 

Yeah. Bacup.

 

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. Even if they do find out ultimately, that the biology is quite different from women. I’m not caring, I don’t care, because there are cancers… other cancers that the biology is different between men and women, and they don’t call it for example, female lung cancer or male bone cancer you know, so why should I be tagged with this male thing? And for me, it’s oh… I’m so annoyed about it. Anyway, I’ve almost overcome my annoyance by continuing to fight the fight when I see this statement, it really annoys me and I get oh… riled up and start doing things again.