Breast Cancer in men

Chemotherapy for breast cancer in men

Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells. The aim of chemotherapy is to do the maximum damage to cancer cells while causing the minimum damage to healthy tissue. Men with breast cancer may have chemotherapy:

  • before surgery to shrink the cancer. This is known as neo-adjuvant chemotherapy 
  • after surgery if doctors think there is a risk of the cancer coming back. This is known as adjuvant chemotherapy.

Chemotherapy drugs are usually given as an outpatient, either by injection into a vein (intravenously) or as tablets. A course of chemotherapy is likely to take 4–6 months. Here men talk about their experiences of chemotherapy and its side effects. A number of men said they felt very nervous before their first session of chemotherapy because they did not know how they would react to it. Some men remember being warned by hospital staff about possible side effects and how best to prepare for them. Bill, for example, was warned that he might lose his hair, he might have a sore mouth and eyes, and he would find it tiring. He experienced most of these symptoms. Many men were apprehensive before they started their chemotherapy.

Stuart was nervous before his first chemo. Looking back, overall it wasn't as bad as he had been expecting but he had been able to have chemo privately at home.

Stuart was nervous before his first chemo. Looking back, overall it wasn't as bad as he had been expecting but he had been able to have chemo privately at home.

Age at interview: 40
Sex: Male
Age at diagnosis: 36
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When people say “chemotherapy” it’s one of these things that you automatically think “oh God, you know, if you’ve got to have that, you’re on your way out” sort of thing, you know? But the advances in drugs these days are so great that, you know, they’ve come on so much that I think it’s… people’s perceptions of it are so different, before and then after they’ve had it. And, I can remember having, being really, really nervous before I had the first one, and thinking I'm going to be thowing up, I'm going to be, you know, so ill and this, that and the other, and…I can remember sitting here in the same chair, having the chemotherapy treatment, and I decided that I’d have cold caps. And they gave me a couple to stick in the freezer and I thought well, didn’t bother me whether I lost my hair or not, but if it’s there to try, then why not try it? So, been putting these freezing cold ice caps on, which were not very nice, and… and managed to bear it, though, so that was alright, and started having the chemotherapy, the first treatment, and it was a very strange thing, especially the one they give you and it… if they put it in too quickly it feels like you’ve got a prickly… sitting on something prickly, if you know what I mean? Think it was epirubicin… the red one but yeah, I mean, I remember seeing all the different tubes of drugs that had to be put into me and you think “God, that’s a lot, there are so many tubes, great big ones and small ones.” And I remember [my wife] saying to me afterwards, I went grey [laughs] during the chemotherapy, which was strange, but once I got the first one out the way and I knew what it was like, and how long it would take and that sort of thing, then I knew, I thought well, fine, that’s the first one out the way, only five more to go. It wasn’t too bad, and now we’ve just got to wait and see what happens, you know, whether I feel sick or this sort of thing …

 
So it sounds as though your experience of treatment was quite a positive one?
 
To me it was yeah, I mean, before as I said, I was sort of dreading the word chemotherapy and thinking what was gonna happen, I was gonna be really ill, and then coming through it out the other side and you’re looking back and you think well, actually, for me it wasn’t too bad you know…
Stuart had been able to have his chemotherapy in his own home because of the type of private health care cover he had. He said this had taken a weight off his shoulders as well because he was “dreading” going into hospital.
 
For most men with breast cancer, there are fewer choices to make about treatment after their surgery than there are for women with breast cancer (see Making choices about treatment). However, some still felt involved in the decisions that were made and one man did choose not to have chemotherapy. The doctor estimated that it would only give him an extra two percent chance of survival and he did not feel it was worth going through the possible side effects for that. Dan did not want to have chemotherapy at first, until it was explained to him that he could not have Herceptin if he did not have chemotherapy.

Roy really didn't want chemotherapy. The doctor supported his choice when he calculated that, for Roy, it only offered a small advantage.

Roy really didn't want chemotherapy. The doctor supported his choice when he calculated that, for Roy, it only offered a small advantage.

Age at interview: 67
Sex: Male
Age at diagnosis: 65
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So I obviously had the operation, and then I had to go back and see the oncologist, and I refused chemotherapy.

 
Did you?
 
Yeah. I refused the chemotherapy, but I had quite an intense course of radiotherapy.
 
So tell me a little bit about, you know, what made you want to...?
 
The chemotherapy. Actually, when he checked it all out, I always said, before the thing, I didn’t want chemotherapy – I really didn’t want it. Everybody I’ve ever, I’ve lost a lot of family with cancer over the years, and every one of them that had chemotherapy didn’t make it anyway, you know? And it’s such a, I mean, it’s worse than the illness, you know? People go through worse symptoms with chemotherapy, you know, and I said that I really didn’t want it. And I mean, if he had said, “Right, you either have it or you die,” obviously, I would have had it, you know? But you know, when I said to him, “No, I don’t want chemotherapy,” he said could he put me on a course of chemotherapy and then radiotherapy, and I said, “I really, really don’t want chemotherapy.” So anyway, he got on the computer and they come up – and all it was giving me was an extra two percent anyway. So it really did, you know, and then he agreed – well he said, “Well, really,” he said, “for what it gives you,” he said, “I don’t blame you for not having it.” You know?
 
So he supported your decision?
 
He supported it, yeah. He supported it. He didn’t at first, but once he checked it out, he supported it. He said, “It’ll only give you an extra two percent chance.” He said, “You’ve got, with your radiotherapy and medication afterwards,” give me eighty percent. With chemotherapy, it gave me eighty-two percent, you know, which I thought was too small a margin, really, to go through all that.
Most of the men who did not need to have chemotherapy were very relieved not to have to have it.
 
At the start of each treatment men had a blood test to check that their blood counts were high enough for the treatment to begin. Treatment could be delayed if their white blood cell count was too low. Some men had their treatment in rooms with cubicles, others were in communal rooms. RG said he felt exposed in an all female environment and he would have preferred a separate cubicle while having his chemotherapy. Tom found it helpful to listen to music while having his treatment as he couldn’t concentrate to read. Stuart appreciated being able to have his treatment in the ‘comfort of his own home’. This saved him a lot of waiting around in the hospital and travelling that other men found tiring.

Eric found it tiring to travel to the hospital and to wait whilst they ran tests and prepared the treatments.

Eric found it tiring to travel to the hospital and to wait whilst they ran tests and prepared the treatments.

Age at interview: 78
Sex: Male
Age at diagnosis: 70
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That must have been very tiring, going backwards and forwards.

 
It was, but then when you do your chemo, you have the chemo in your hand but the day before you’re having the chemo you have to get a blood test, go back to the hospital, well, the hospitals can have it, up at the hospital and have a blood test, they stick it in the vacuum chute and “schtoomp” it’s in the laboratory, to make up whatever mixture they think I ought to have. That was another problem, another tiring problem. Alright, they had, they have to make each dose to suit the person that day, but I’ve been at the hospital waiting my turn. I got there just before time, I’d been waiting three or four hours for this stuff to come from the lab, and it’s… ain’t spoke to anybody that’s had it but it ain’t nice at all. Like a milk bottle And stick it in and… about five or six sorts of bottle, a little one about this big and stick it in and they said that’ll make your bum itch, and it did.
 
Did it?
 
I put it in here and within seconds, my bum itched. But only for a couple of minutes and it had gone. I said, “Phew, that’s quick, it’s got to go from here all up there, round here, down there”. 
 
A few talked about being given steroids alongside chemotherapy. Some described what it was like when the chemotherapy was being given to them and talked about the immediate side effects.
 
A few men had quite minor side effects from the chemotherapy and were able to keep working throughout their treatment. Most men, however, had more significant side effects and many men found having chemotherapy a difficult experience.
 
Common side effects include tiredness, weakness, nausea, vomiting, diarrhoea, hair loss, weight change, and altered taste. A couple of men had severe constipation. Some men also experienced bone and joint pain, loss of fingernails and toenails, mouth sores and numbness in fingers and toes. One man described being in ‘huge discomfort’ when the skin came off the bottom of his feet after chemotherapy. Often, men experienced worse symptoms as their treatment progressed but they also tended to follow a pattern so men were able to expect the side effects and try to manage them.

Dan describes his side effects, which included tiredness, loss of taste, leg pain, loss of appetite, sleeplessness and loss of his head and body hair.

Dan describes his side effects, which included tiredness, loss of taste, leg pain, loss of appetite, sleeplessness and loss of his head and body hair.

Age at interview: 52
Sex: Male
Age at diagnosis: 50
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 What was the experience of having chemotherapy like?

 
Oh experience. It’s difficult to explain the experience, but anyway, it is terrible. It is traumatic, but it is worthwhile. Just for a few days, and I can see now, I can imagine, now, those feelings, like it was something which is normal, the benefit that it brings afterward, we’ll have to look forward.
 
Ok – did you think that at the time?
 
No.
 
No.
 
No.
 
What did you think at the time?
 
I was just thinking I shouldn’t have chemo, yes.
 
Did you feel that you were sort of persuaded into it? Because you said that you might not have got the Herceptin?
 
Yes.
 
Did you feel pressured?
 
A little pressured, but I think they did the best thing for me. Yes. I think they made me decide. They made me decide the right decision, yes. If that was not the case, I might not have taken the chemo – so I might not be able to speak whatever I’m speaking now.
 
So what happened on a day that you were going for chemotherapy? Did you have to go to the hospital early? Or
 
I go to hospital on time. I usually go to hospital on time – that was in [hospital] in central [name of place]. and the staff were very good, doctors were very good as well, and everybody knew me. Every time I go there, they say, “well the smiling man is coming”. So they are very good. They are very good right. I went there for two years. The same ward, same people looked after me.
 
Two years for chemotherapy, or was that because you had the Herceptin after?
 
Herceptin as well, yes, same place.
 
What side effects did you have with the chemotherapy?
 
Oh, side effects, I had blurred visions on the very first day. I got tired, I got, you name it. Tongue, taste. My tongue is still tingling- my taste is gone. And I had pain, I got leg pain. You can’t eat. Even sleep, you want to sleep because of the energy was not there – so there’s a lot of side effects, which is difficult to explain. But I went through all of these side effects. However, it didn’t last long. You see, the side effect, especially the biggest effect is on the third and the fourth day. First and second day is not a problem – yes, but even that, I was still driving on my own.
 
Who took you to have chemotherapy?
 
I was going on my own. Yeah, sometimes my wife was coming, sometimes I was going on my own.
 
Ok – and did you lose your hair?
 
Yes, I did – I lose my hair on the very first day.
 
Wow.
 
On the very first day, when I went home, had a shower, and all the hair gone.
 
Right.
 
Yeah.
 
Was that your hair here and your eyebrows and eyelashes?
 
Yes – everywhere.
 
Everywhere.
 
Yes yes.
 
And how did that make you feel?
 
Before going for chemo, I nearly shaved my head but it was not shaved, it was a number one cut, haircut –

Robert had blistering in the mouth after each treatment. His nails thickened and dropped off and he lost his body and head hair but he wasn't bothered by this.

Robert had blistering in the mouth after each treatment. His nails thickened and dropped off and he lost his body and head hair but he wasn't bothered by this.

Age at interview: 58
Sex: Male
Age at diagnosis: 54
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I started chemotherapy on June 8th 2006, four doses of chemotherapy, to try and reduce the size of the tumour. That particular chemotherapy did not affect me in any shape or form. I could carry it on, and I was fine. I had my operation in September of 2006, and then I think it would be probably be October I started with the second round of chemotherapy. Now that chemotherapy was a much stronger dosage, different to the first lot and that caused blistering at the mouth and in the end all you could, all I wanted to eat was something that was very sweet because the taste buds went completely you couldn’t, everything tasted funny, odd, and not very nice really. Radiotherapy started in the, towards the end of November as well as at the same time as I was having chemotherapy and I had my last chemotherapy on December the 28th.

 
Just between Christmas and New Year.
 
Yes, but, sort of – well an amusing point is that’s where, my youngest daughter got married on the 1st December and her in-laws, her father-in-law took me to get my radiotherapy treatment that particular morning. And I’d just recovered, I’d recovered from the previous dose of chemotherapy enough so that I could give the speech, the father’s speech at the wedding in the evening, so that was a good thing.
 
That’s, so that’s an awful lot of things to be dealing with at the same time.
 
And four days prior to the, I think it was four days, prior to the wedding, our first grandchild had been born as well. So there was plenty to keep on going – to take your mind of this chemotherapy.
 
The symptoms from that second lot of chemo, was, you’ll get cold or flu or…
 
Right.
 
And then that was after about three days ‘cos we always went in on a Thursday or something like that, to have my treatment and then after that I got this cold, you know I went to bed, then two days after that the blistering started, so then you go into a pattern.
 
So did you have that after each of your – did the blistering come after each dose you had…?
 
Yes, yes, and you have to have, I’m thinking now, you have to have steroids – You have to take steroids before you went for the…
 
Yeah. Was that prednisolone or – anyway.
 
I’ve got my book, I’ve got my book here you can look at that. You had to have steroids prior to going for your treatment and then you took them just for two or three days I think it was. Whether that was to prepare you, so you could stand it.
 
Yeah. Yeah. And so how many doses in your second lot of chem…?
 
Four.
 
You had four, four doses there. And did you have other side effects, did you, did it affect your hair or…?
 
Oh well it did with the first lot, all my hair came out. And so my daughter, my youngest daughter went off and bought a pair of clippers and ever since then, if anything, any hair grows, have it all off! … as I am!
 
So did you have quite long hair before that…?
 
No, not really it was thinning a bit so.
 
And did you lose your eyebrows and …
 
I think so, I think everything went, yes.
 
So had, how did that feel at the time?
 
… sort of odd I suppose but I wasn’t again, it didn’t, didn’t bother me. But again, it’s probably different for women, I mean a lot of men look like this now.

And did you have other side effects from the, from the chemotherapy at the time?

Yes. The nails go funny, finger nails.

When you say they go funny?

Yeah, they just go a bad colour. Thicken up… drop off – still a little bit of tingling in my finger ends, but the worst one is my right toes – they can, well they’re partially numb. And those toe nails are em, gross really.
 

Ben's veins became like 'plastic straws' and he had disconcerting pains in his arms. He lost all his head and body hair.

Ben's veins became like 'plastic straws' and he had disconcerting pains in his arms. He lost all his head and body hair.

Age at interview: 68
Sex: Male
Age at diagnosis: 63
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I was on FEC. Have you heard of FEC? I was given FEC and… the first lot I found quite easy, but by the time I got to the third or fourth one, my veins were like plastic straws, you know? The feel, I could feel them underneath and they weren’t sort of giving. 
 
So yes, the third or fourth, and I was telling my wife that the pains in the arms… but as I sat there for each visit, because it’s sort of monthly, to let the body recuperate, I was sitting with people that were six stone and grey and I looked around and I thought “my God, I haven’t reached that stage yet” and of course I’m a very positive person, so I try to keep positive all the time and I thought “well, at least I’m progressing alright and if I can get through this, then I’m fine” and eventually I did get through it but as I say, the most disconcerting thing for me was the arms, the pains in the arms.
 
Just in the veins?
 
In the veins, yeah. 
 
All our family know, and her family, the brothers ring me occasionally to say, “How are you doing, Ben?” because after the chemo, of course, I lost all my hair, and that’s one of the points of interest. I was offered the cap, the cold cap, and I said, “Yeah, alright, if it saves my hair falling out”, so I went along to the chemo nurses and they said, “No, you haven’t got enough hair, it’s gonna freeze your head. It’s gonna fall out anyway” so I looked at my wife so we said, “Yeah, alright, we just have to put up with it” and so, yeah, it… it duly fell out. I combed it and it started to come out so I went to the barber’s and had it all taken off, and then within a few months, it’s grown back.
 
Mhm. And was that hair loss everywhere, on your arms and your eyebrows and your eyelashes?
 
Yes.
 
Did it all go?
 
Yes. 
 

 

 


Often, men experienced worse symptoms as their treatment progressed but they also tended to follow a pattern so men were able to expect the side effects and try to manage them.

Interview 32 became very tired and down as his chemotherapy progressed. They adjusted his dose down and decided not to give him the last dose.

Interview 32 became very tired and down as his chemotherapy progressed. They adjusted his dose down and decided not to give him the last dose.

Age at interview: 69
Sex: Male
Age at diagnosis: 66
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The first, as I said the first chemo I was on, it wasn’t as strong as the… the first one I was on, if I got a bit tired I’d go to bed and have a bit, go to bed, you know, I might get up at seven and go to bed at ten and have two or three hours rest, get up I could do the garden, but the other ones, no, I was always tired. I couldn’t, I could start but I’d have to leave everything there and then for the day and so... And of course the next one again was stronger again, this last one, I feel a lot tireder now. I’m alright now I’ve had a, came in, had a bit of a lie down, sort of thing, so I’m alright now. When I - I’m alright when I’m sitting’ down or that.

 
It’s just when you’re doing anything quite physical?
 
Yeah, or if I stand up, I can feel it now, I notice it,
 
You said that the first time you had chemo you didn’t find it too bad?
 
No well… it was...
 
You said it wasn’t too tiring.
 
I don’t know how strong, but the first one, they told me, gets, like, I knew about getting sick, I knew from my daughter. And she said ‘always keep taking the tablets, don’t wait till your sick’ and you do that, you know. So, little things like that. I, I took the tablet, I wasn’t sick. The only thing - tiredness mostly, and, not sick, but your stomach was a little bit, you had to be careful, you know. Other people I was with, they were sick, and diarrhoea and everything… I was… and mouth ulcers.
 
The only side effects, there was this terrible, the tiredness seemed to get worse y’know? And of course the time when my platelets went down, the following Christmas they went down very low, I was down very low. They had to take me in, and this Christmas. I don’t blame the chemo, I think it’s because I got, just when in the middle on the chemo they increased it from a… was it, a hundred and thirty up to a hundred and seventy. And I think , I think because, just after getting it I got this bit of a… picked up a cold, and it pulled me down, and they had to re… had to put me back to the hundred and thirty, and I don't know if that interfered, because I thought we were doing quite well with it. I thought I was beating the cancer, I was hoping to keep in the one hundred and seventy, but they thought it was too much for me you know. And then a while after, she made the decision that, didn’t give me the last one, but it seemed to be the same thing. Once I start on the chemo, it’s attacking the cancer and the cancer seems to be going. When I get to the halfway start its like if my body has got used to it. 

Occasionally people experience unusual symptoms as they are receiving their chemotherapy. Interview 32 describes one occasion when this happened to him.

Interview 32 describes getting an immediate reaction to one treatment.

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Interview 32 describes getting an immediate reaction to one treatment.

Age at interview: 69
Sex: Male
Age at diagnosis: 66
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One of the chemos I did have a bit of a, I was in the mid… was it, they said, ‘oh it’s usually the first day,’ but I’ve got to be awkward again, the second day just they started giving it to me, and, and I thought it some, like it, something happened my knees, and then I felt all funny, they had to stop that, they give me, they gave me some other injection or something, they called the doctor, was called to me.

 
But they said I had to be awkward again, the first any side effects where I gave them a big fright, everything, I took it all great the first day, but the second day, then, I was, it was starting off. I think a half hour… and they had to stop it altogether and they gave me something else, and I dozed off for a while, and then when I came back I felt my old self again. I said, “Go ahead then,” and they gave it to me, sort of thing, you know. And I was, that was the only time I had any side effects.
 
Yeah. And so they were immediate side effects then?
 
Yeah it was just… that sec... it was just, like, it was, like, a dog was biting my knees, or scratching, something was scratching my knees, then I felt all, up in my legs, and I felt a bit funny and I said, “I feel a bit queer” like if some, and they said, “alright, stop,” and then they got a doctor and he said, “get me something else,” I think to calm me down, I don’t know what it was, I know I went to sleep for it, when I came up I felt great!
 
Yeah, oh well that’s good.
 
And eh, I don’t know, the sleep helped me, but anyway after that, I was able to have about quarter an hour afterwards, and they had no more trouble then, from then on.
 
So they carried on with the treatment the same day?
 
Carried on with the treatment, yeah. The same morning.
 
The same morning after you’d had the, yeah… And you were fine?
 
Yeah, I didn’t, I had no – I said, the only side effects I had it’s like, when they first gave me the chemo it seems to be helping my cancer then right in the middle of it, “oh it’s not working anymore,” so…but, as I said, I felt that I got off lightly compared to some of those people with their sores in their mouth and their...
 
Yeah, they can be horrible can’t they?
 
And they, some of them get their hands sore, their feet, but thank God… I’ve been very lucky.
 
So you managed to, you know, escape all those side effects?
 
All the side effects, the only side effect I had was getting tired. But then again I just… go to bed for like two hours, three hours, whatever, between two and four hours, you know, then I would be alright you know? And then I, well look, I haven’t been doing anything. I haven’t been doing anything. I used to walk miles a lot… I’m not walking up, I’m getting annoyed now, ‘cos walking up to the shop up there and back, I’m getting a bit puffed, sometimes puffed out.
People reacted differently to the loss of facial, head or body hair. Mike C said it didn’t make much difference to him and he kept it short in the summer anyway so he wasn’t sure that anyone even noticed. RG was surprised that he did feel bothered when he lost his hair.

RG found chemotherapy hard. He was surprised he was bothered when he lost his 'good head of hair' but it gradually came back afterwards.

RG found chemotherapy hard. He was surprised he was bothered when he lost his 'good head of hair' but it gradually came back afterwards.

Age at interview: 64
Sex: Male
Age at diagnosis: 62
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 I found the, chemotherapy very hard, I must admit. It was in a communal room, I’d have preferred it to have been in a separate cubicle. And, I- just found it very hard. Very claustrophobic really, you get these things shoved into you, and yeah and- I was okay to start with, I think I was okay on the first one, I didn’t really have, from, from my memory I didn’t really have very many after-effects, of that one. And possibly not much from the second one but it builds up, the effect builds up doesn’t it? And, then the later ones, for a week afterwards, I was you know, out of it, really, not very well and…certainly later on, in fact I was sick during the actual procedure, a couple of times. Yeah, whether it was just a mixture of anxiety and claustrophobia and the heat and all the rest of it, and the process you know. So, you know as I say, and I lost my hair as well of course. Which- I didn’t think that would bother me but it did. Cause I’ve always had a- you know, I’ve always had a good head of hair really. And I thought it would- well I coped with it but, I didn’t really like to go around too much you know. Felt a bit sort of, self-conscious, you know. I must admit I was heartily relieved when the chemotherapy was completed. And it took me, well I think it took me several months, gradually, to build up until- you know to feel more like my old self, you know. My hair gradually came back.

A couple of men had been reluctant to get their last treatment because of how severe the side effects had become. Bill felt his initial tiredness ‘was being built upon each time’ and he found chemotherapy ‘just so horrible’ that his wife really had to persuade him to go to the last treatment.

Mike experienced side effects like nausea and a metallic taste after his first four sessions but worse ones (like neuropathy) after his last four. He wasn't warned about getting constipation.

Mike experienced side effects like nausea and a metallic taste after his first four sessions but worse ones (like neuropathy) after his last four. He wasn't warned about getting constipation.

Age at interview: 59
Sex: Male
Age at diagnosis: 59
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 I was very, very nervous for the first course of chemotherapy cos I really didn’t know what to expect. It was… most sessions were two hours in time length. They injected the… the drug and all the other drugs that go with it to combat nausea and so on and so forth, and… I think the worst thing was that they didn’t warn me, when I talked about constipation, I know it’s not a subject that one wants to talk about, but had they warned me prior to… well, he actually gave me senna tablets. He said, “Well, take them if you need them” but… on the first time round it was just… I can’t believe it. It was just unbelievable. I mean, I thought the whole world, I thought that was worse than having chemotherapy, but I learnt after that, you learn and you pick up certain things that when they give you the anti-nausea tablets, which are very strong, and the combination of the chemotherapy does tend to bind up your works, and I found that prior to having the next chemotherapy that if I were to take the senna in the morning, in the evening, and then the following day morning and evening and carried on that I wouldn’t have… and after that episode, fortunately enough, I had no problems right the way through to the end, but the first lot of chemotherapy was to me was a dawdle. I was on taxotere for the first four, which I tolerated it quite well. I had a little bit of side effects, a little bit of a nausea and a little bit of sort of gastric reflux and, you know, the taste of the metallic… but when it came to the next four, which was the docetaxol, that was, that I found very, very hard, because… it would kick in five days or six days after the chemotherapy. It made me extremely lethargic, tired, loss of appetite, just wanted to sleep. Your mouth becomes, you know, with sores… and then afterwards your eyes start to stream and your nose starts to stream and that carries on, but then I was getting these… pains in the knees, in the knee joints… and I’ve forgotten what it was called. I don’t know, it was nephritis, I’m not sure if I’ve got the right expression for it, but it attacked my toes, the pain actually attacked both, as soon as it hit this foot, it would hit my left foot and then the pain would be excruciating. I mean… I just, it would just come on [clicks fingers] just like that and I, I just didn’t know where to put myself and the only thing that actually worked was paracetamol. Nothing else would touch it. Volterol wouldn’t touch it. I…

 
Was it neuropathy?
 
Neuropathy, yeah, sorry. What did I say? I called it nephritis. No, neuropathy, yeah, and… I learnt again with that how to control it. I knew as soon as, I always used to carry the paracetamol close by me. I knew as soon as my knee, I’d get the pain, I’d take the paracetamol. The trouble is, the paracetamol would take an hour to kick in but it was the only thing that sort of calmed the pain down, nothing else would, you know? 
A few men caught infections because their immune system was affected while they were undergoing their chemotherapy treatment.

After one of his sessions of chemotherapy Alan noticed he had a high temperature and was hospitalised for an infection. After this he tried to avoid coming into contact with germs.

After one of his sessions of chemotherapy Alan noticed he had a high temperature and was hospitalised for an infection. After this he tried to avoid coming into contact with germs.

Age at interview: 73
Sex: Male
Age at diagnosis: 71
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On my first set of chemo, I had it on the Monday, and I’d read the booklet, it said if your temperature is thirty eight, for- after two hours. Well on the Sunday I had quite a high temperature, so I rang the hospital up and she says, “Come in”. So I went in and they obviously.., so she said, “We’ll have to keep you in overnight”. So I said, “Why?” Well, [laughs] there’s a bit of a saga there, because [name of hospital] has no, blood analysis facilities, it took them three goes, cause they have to send it from [name of hospital], to [name of another hospital] which is quite a distance as you probably know. So when they discovered that- I can’t remember what it was, but one of the components of my body- blood was point one, lifted to point one, which is literally immeasurable, normally it’s fourteen, they kept me in for three days, and I had a severe infection. And so, the- when I came out the sister was in her forties, sat me down and she says, “Right, I want you to listen what I’m going to say to you” and she said, “You were very seriously ill and you didn’t realise it”. She said, “it was an infection”, she said, “can you try and keep away from public places”, she says “and when you do a job like cutting the grass which I’m sure you will, if you feel tired sit down, and-“. And I said okay, it’s like eating elephants, bite it off slowly. So, the Friday night prior to the Sunday, we have an old gentleman’s club in the pub where we put the world to rights. So I’d been to the pub. Now pub glasses are notoriously not cleaned properly. So I completely stopped going, to anything like that. And I went out obviously but, I didn’t eat or drink outside. And I kept- for the whole rest of the period I was perfectly all right. 

 

Many men were given medication and treatments to help prevent the chemotherapy side effects. A couple of men said they were given a bag of medication to take home after their first treatment. Bill felt very nauseous until he asked for a different anti-sickness pill (Ondasetron) on the advice of a relative who was a health professional. Some found that these treatments alleviated the side effects of chemotherapy, especially the anti-sickness medication. A few men, however, felt they also suffered side effects from the medication they were given to prevent the chemotherapy side effects.

Tom wore a cold cap during chemotherapy to try to prevent hair loss. This enabled him to keep some hair which lifted his spirits, but some still fell out.

Tom wore a cold cap during chemotherapy to try to prevent hair loss. This enabled him to keep some hair which lifted his spirits, but some still fell out.

Age at interview: 54
Sex: Male
Age at diagnosis: 50
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I had FEC which is a combination of drugs, and then taxotere. And they felt confident that this would take my hair off. So, I just, for whatever reason, I thought I would be dispirited to lose my hair. So I thought I'd put up with having the cold cap. I expected it to be pretty uncomfortable, in fact it was terribly uncomfortable. But I did persevere.

 
So did you wear the cold cap during the whole time the treatment was being administered and…?
 
Yes and for a little period later, sort of two hours in total I think. And - it is shockingly cold when it's put on. It's a very tight - in essence it's like those sleeves that you put on a wine bottle to cool it. And it's very tight, it has to be tight. It essentially freezes the follicles so that they don't take up the chemotherapy. And as I say, it's shockingly cold. It makes one feel a bit sort of queasy, the actual impact of the cold.
 
Do they warm the rest of your body to compensate for you losing –
 
No, no. But it was plenty warm in the ward.
 
Right, yeah. And did you wear that each of the six times that you went there for chemotherapy?
 
I did, yeah. I did. I'd spoken to a number of healthcare professionals who'd tried it, and they said that they wouldn't want to wear it. And I remember my wife had said that she couldn’t, she never, heaven forbid she had to go through this treatment, she wouldn’t, couldn't bear this idea of the coldness.
 
And was the cold cap fully or partially successful in helping you to keep your hair?
 
Oh I should say, yes, I remember after the first session of chemotherapy, getting up in the morning and having a shower and combing my hair and thinking I wonder what's going to happen. And I remember just piles of hair falling out. So I think already my sideboards had started to fall out and... I think… I concluded that my hair is a bit greyer now than it was then, but it's, I have, it’s generally been quite fair, and I think I must have a combination of quite fair hair and quite dark chocolate brown hair. Which is a mixture. And the chocolate brown hair all fell out.
 
It was basically in a matter of days. So I just remember it - it was quite disconcerting, it's very... in the bin - but it left me with finer, blonde hair. Which stayed, for the whole period. So as I pointed out, I have probably had more hair then than most of my male colleagues! I had quite - much longer hair then, I think, it's quite short now but I've tended to have unfashionably long hair. So - and I had a very good - my hairdresser, who I go to regularly, who is not a specialist, just at the end of the road you know, but it's nice to know someone that one can have a conversation with. And she was actually great. She made real efforts to make the best of my hair. Which was - uplifted my spirits a bit. That was nice.

Although most men recovered from chemotherapy after their course of treatment had finished, some men experienced longer term side effects. A few said that their hair was thinner or a different texture after chemotherapy and one man’s hair never grew back. A few said their toenails remained ridged and discoloured and a small number of men said they still experienced pain or numbness in their hands and feet. A couple of men wondered whether the experience of chemotherapy had altered their character. John thought it gave him ‘a terrible short memory lapse’ and another man thought he had become more anxious. Men recognised it was difficult to separate out the effects of this treatment from everything else that had happened.

Mike describes how he still has some ongoing symptoms a few months after finishing chemotherapy. His oncologist has told him to be patient because he will get better in time.

Mike describes how he still has some ongoing symptoms a few months after finishing chemotherapy. His oncologist has told him to be patient because he will get better in time.

Age at interview: 59
Sex: Male
Age at diagnosis: 59
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 I still have the problems now but not so bad cos they seem to be gently beginning to ease off, slowly, so my left foot is beginning to come to with my right foot is still… my toes, underneath my toes are very, very numb still and my toenails have gone discoloured, my nails are all fallen off partly, I bang them, a bit falls off here and a bit falls off there, but I’m not particularly bothered about that, and the same with my feet… but I suppose on the whole… a lot of people have said to me, “You know, you’ve combated it, you know, pretty well.” I’ve avoided, yes… I’ve had depressed days but I look at it this way is – thank God I don’t feel ill. I might have lost weight but I don’t feel ill cos I can now walk properly whereas at the beginning of December I couldn’t walk up the stairs. I just couldn’t walk up the stairs. My muscles still hurt. It does affect the backs of your muscles and the tops of your muscles on both legs, and if I do sit down for long periods of time I can’t get up until, until I actually start to flex my leg muscles.

 
I don’t think they warn you enough about the side effects. I know my oncologist writes down everything I say. In fact, I have to see him tomorrow evening and week by week he says, “Well how are your muscles” and I say, “Well, they’re not really that improving but they’re marginally improving but it’s not quick enough.” He’s sort of, he’s saying, “Yes, well, Rome wasn’t built in a day”, so I said “Well, that doesn’t make me very happy because I’m very uncomfortable. I can’t stand up, I can’t do, you know, I can’t do certain things that I want to do, and I’m stuck”. He says, “Well, you’ve just got to be patient. So I had to take his word for that, I’ve got to be patient and, you know, in a few months’ time these symptoms will disappear.
 
But you feel they are getting better?
 
I feel, yeah, slowly getting better. I know my left foot’s a lot better than… my right foot is, is marginally, I’m not having one of the… one of the symptoms where my feet would go very cold. I can have the heating up very high here and my feet would be like ice and it would take a couple of hours when I get into bed for my feet to become a normal temperature.

Men’s families often really helped them to get through their chemotherapy (see also Support from family, friends and colleagues), although a few men talked about how it was also extremely difficult for their partners and family to see them go through the chemotherapy and its side effects.
 
Most men felt extremely relieved after their last session of chemotherapy, but one man described a feeling of ‘absolute abandonment’ after his last treatment.

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.

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.

Age at interview: 54
Sex: Male
Age at diagnosis: 46
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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.

Some of the men also described how they were often the only man in a room full of women when they were having their chemotherapy (see Experiences as a man in different breast cancer treatment settings’).

There are several of the other cancer sections on this website, including the site on ‘Breast Cancer in women’, also describe people’s experiences of having chemotherapy.

Last reviewed June 2017.
Last updated October 2013.

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