Michael A - Interview 22

Age at interview: 67

Age at diagnosis: 57

Brief Outline: Michael was first diagnosed with breast cancer in 2000. Had a mastectomy and 11-12 lymph nodes removed, followed by radiotherapy and tamoxifen. Found another lump in 2008 which was also breast cancer. Had a lumpectomy, followed again by radiotherapy and Arimadex

Background: Michael is a retired medical technician. He is married and has 2 adult children. Ethnic background' White British (English/Irish).

More about me...

 When Michael first found a lump on his chest he was immediately suspicious; he immediately thought that it was breast cancer and he went along the next day to see his doctor. A (female ) friend of his had recently had breast cancer. He was referred quickly and soon had a mastectomy as a day patient. Two weeks later he returned to have 11 or 12 lymph nodes removed. He experienced some lymphoedema after the surgery. There was then a delay of a few weeks before he started 15 sessions of radiotherapy. He was prescribed tamoxifen which he took until just after he was discharged in 2006.

In 2008 he found another lump on his other breast. This time he had a lumpectomy and the removal of just 2 lymph nodes which he described as ‘a piece of cake’ in comparison with his first experience. He again had radiotherapy, followed by a course of Arimadex.

Because he had had two separate diagnoses of breast cancer, he was offered genetic testing, and he was not surprised when that showed that he had BRCA2. He was advised that this put him at higher risk of also developing prostate cancer and it was suggested that he should have further checks. These showed signs of early pre-cancerous changes in his prostate. Somewhat reluctantly he went on to have a prostatectomy which he was recovering from at the time of his interview. One of his sons had gone on to have testing for BRCA2 which thankfully proved negative. Michael did not know about his biological family history because he was adopted.

Michael has a close and supportive family and good support from his religious faith and his friends in church. He felt very well treated throughout his treatment for his breast cancer and well supported by family and medical staff through the whole process (in contrast with his experience of prostate cancer surgery). He thought that there was quite a positive difference in the information that he was given at the time of his second diagnosis in 2008 in comparison with 2000. In 2000 he had felt that the literature he was given was all aimed at women, but by 2008 things had improved and the material was less gender-specific. Most of his treatment was in the hospital that he worked in and he felt it was a real advantage to be treated in a familiar environment. He had found it helpful to be able to tell people about his breast cancer and to be able to talk about it.

 

Michael had some lymph nodes removed a couple of weeks after his mastectomy and needed to have fluid drained regularly. He had some discomfort but he did not develop lymphoedema.

Did you leave hospital with some kind of drain or…?

 

I’m trying to remember, did I have a drain in the breast or not? I don’t believe I did actually but I did get the lymphoedaema there and I did have to have it drawn off. In fact, it [operation] was done on a Wednesday and I went back to work the following Monday because I felt fine, and I had the advantage of being able to walk up to the surgeon’s office and say ‘hello’ to his secretary and say, “I need a bit more drained off”.

 

When I had the lymph nodes removed, which was about two weeks later I think, or perhaps it was a month, then I did have a drain in which a district nurse came and emptied every now and again. Again, I was only actually off work for a week because I felt very well, but again I had to have the lymph removed from my armpit. I was beginning to think that the breast care nurse was getting a bit suspicious. I liked spending a small… certain time within a small room you know, no I don’t think so but I mean, I had quite a lot removed. I don’t know how much it was in litres but it seemed to be quite a lot. She said there seemed to be quite a lot, whether it’s because you’re a man or not, I don’t know, but it finally stopped you know, after two or three weeks I think.

 

And so did you have to have that drained sort of every day or every few days?

 

No, it was… I think it was, once I was back at work the drain had been removed, the permanent drain, I think it was probably about three days and it started to feel really uncomfortable and I could feel… it was just like carrying a tennis ball in your armpit and she removed that and it was like that I think probably about once a week, or perhaps every few days, depending how it… the weekend felt. And then it gradually got less and… until it was a week and then I think the last time, it was about ten days between that. There wasn’t a lot left in the last one.

 

And have you had trouble with that since or…?

 

No, there is always the possible lymphoedema in the arm of course you know, which is a sort of swelling and I did, my arm did feel peculiar one time. This was probably a year or so afterwards and I went and saw a GP… There’s a measurement they actually do and she said, “No it’s not, but if you feel it is I can give you a little arm stocking that you sort roll on that compresses it and will make sure the lymph doesn’t swell there” but I think I wore it once and it was more uncomfortable than the feeling in the arm. So I didn’t really have that.

When Michael needed to have a second breast lump removed eight years later, he found the surgery and sentinel node biopsy very easy.

You had no problems on the other side after you had the lumpectomy and the sentinel nodes…?

 

No, no, in fact that was a very, very… that was very smooth actually. They’d obviously… they’d developed their own technique in the intervening eight years. As I said, it was very, very simple actually, the two lymph nodes being removed and you would notice they’re gone and the scar is a lot smaller. Where that is, the scar on the breast is different-shaped. That’s it. It’s still there a bit but it was very easy actually, it was very easy.

Michael compared the information on breast cancer that he was given in 2008 with the information he had received when he was first diagnosed.

So the literature that you came across when you went back in … when you were diagnosed for the second time…?

 

In 2008? Yeah…

 

Yes, you felt that was much more sensitively written?

 

It was actually… it was not gender-specific and it wasn’t even sexual orientation-specific. Which was quite interesting, which seemed a bit odd because I thought you’re either men or women but obviously they felt that they were trying to encompass everybody so nobody actually felt that perhaps they were left out of it. And the booklet actually had experiences from patients and with a little interview from the man and an interview from his partner you know, whoever that might be. I did actually read it because having been there before, I felt ‘I’ve been here before’, you know, so it was not a big problem, I was just interested in that. 

Michael had great support from family and friends who prayed for him in church. He was able to talk without embarrassment to the men in the men's group at his church.

And so, did you feel yourself that you had any of that support? Were you able to talk to other friends or (overtalk) breast cancer?

 

Yes, one I… once it became fairly public knowledge because I didn’t actually hide it there was several ladies who, among our group of friends, who actually said, “oh we’d had it”, you know, and “I had it and I’m fine now so don’t worry about it and that’s… we’re still praying for you in the church” so that was you know, that was all more support. My wife was very supportive and my family who were really I think at one point, wanted to wrap me up in cotton wool and pack me off somewhere. That’s how I think they wanted to do.

 

Did you find that difficult or…?

 

No, no, no, no, they’re… I’m very blessed with my family actually, they’re lovely you know, two lovely grandchildren as well. So, yeah, it just… I think it probably would have been harder if I’d kept quiet about it and not actually told anybody and said, don’t tell anybody except the family.

 

So, did you consider that at all or did you

 

No I didn’t actually… I’m afraid…

 

…just decide almost immediately that you wanted to just tell people?

 

Oh, yes, yeah. Well, people you know, when I said, “I was going to have an operation”, they said, “What for?” And the men’s group that I belong to in the church, they were very supportive and (cough) they… everybody was actually. I didn’t even actually find anybody embarrassed to talk about it. I suppose if they had have been they would have spoken about it. Yeah, I found being open about it was a lot easier. I’m like that anyway, why hide it?

Michael had been able to offer a female colleague support without embarrassment when she developed breast cancer.

And did you consider going to any kind of cancer support group or has anything been offered?

 

Well, they did actually send me an invitation to one, but going by the actual… the seminar that I sort of gave them a little story to in 2005, it would have been all ladies who probably… I don’t think it bothered me too much but it was really… there was an awful lot on the agenda about sort of constructive surgery and special brassieres and things and I think they may be felt inhibited and I didn’t know I had anything to offer. I said, were there any other men going and they said “no”. So, but one strange thing that came out of it was that I was able to… there was another lady who worked in our department developed breast cancer probably about eighteen months after I’d been through it, and she knew I’d been through it, and I was able to offer her a certain amount of support without embarrassment which I think she found quite helpful because if it’s somebody you know, it’s always a lot easier and you’re more inclined to believe them, I think.

Although Michael had never heard of breast cancer in men, he was immediately suspicious when he felt a lump. A female friend had died of breast cancer and he was a hospital technician.

I discovered it [lump] in 2000. We were meeting together in a group and I just happened to put my hands across my chest and I noticed there was a lump in my left breast. Having worked in a hospital and also… as a technician, not a nurse, and also a friend of ours had recently been through a very painful death from breast cancer, I was immediately suspicious of this lump so I went to the GP straight away, and within a week I’d seen the surgeon down at the hospital which was treating me, and he confirmed there was a lump. I had a biopsy and a mammogram and it proved… actually, the worst thing of that was the first time I went to see the out-patients department, they weren’t sure of the diagnosis. The histology was a bit unclear, and they needed it to be seen on somebody sort of more senior presumably. So that was a very, very difficult week, between the two meetings but I had a very personal experience of God’s love for me.

 

I mean, we are Christians and have been for some years, and it really… and that and the love of my family and my friends and the support, really in the end I felt yeah, okay nasty things happen to people. I’m no exception and you know, this is it.

 

And when you first had that lump, did you worry that you had breast cancer? Were you aware at that stage…?

 

Oh, I knew… oh to be honest, I felt I have a lump there in my breast, it’s probably going to be breast cancer.

 

Right.

 

I’m not quite so sure why I was so sure.

 

Had you heard of any other men having breast cancer before, or…?

 

No, I haven’t. I’ve not really given it any thought in a personal sense, it was just we were very, very sad when… I mean, she was forty-eight which is young, she had everything to live for as they say and so… I hadn’t no. To be quite honest, I’ve never really thought about cancer up until that happened when I was fifty-seven when I’ve discovered it. Apart from hurting my back while lifting things and having a hernia through lifting things, I’ve never really had anything more than flu so I’ve always felt fairly healthy, fairly active you know. I had a job that involved a certain amount of physical activity, standing up much of the time so I felt fairly fit. So it… I’ve thought about it since you know you actually explained what would be happening, and I was trying to think how I felt about it and I think I was just accepting it. 

Michael went to the GP as soon as he noticed a lump because he thought it was suspicious. He was sent for tests quickly but found the wait for the results very difficult.

 Well I discovered it in 2000. We were meeting together in a group and I just happened to put my hands across my chest and I noticed there was a lump in my left breast. Having worked in a hospital and also… as a technician, not a nurse, and also a friend of ours had recently been through a very painful death from breast cancer, I was immediately suspicious of this lump so I went to the GP straight away, and within a week I’d seen the surgeon down at the hospital which was treating me, and he confirmed there was a lump. I had a biopsy and a mammogram and it proved… actually, the worst thing of that was the first time I went to see the out-patients department, they weren’t sure of the diagnosis. The histology was a bit unclear, and they needed it to be seen on somebody sort of more senior presumably. So that was a very, very difficult week, between the two meetings but I had a very personal experience of God’s love for me. 

Michael found the week between having his tests and getting definite results really difficult.

You said you had to wait between getting the results. Did you have a second biopsy on the first lump or did you just have to wait to have somebody else…

 

No, I had to wait…

 

… interpreted the same biopsy?

 

Yes, I think… he said, I’m sorry the histology is not conclusive and we want Mr so and so who was on leave at that time to look at it, and they did and a week later they confirmed that it was in fact an aggressive cancer but quite small.

 

Yeah, so that must’ve been a horrible week. You said it was?

 

Yes, it was, it was a really… it was actually a very, a very unpleasant week but…

 

Can you say why that was? Was that just… the immense uncertainty?

 

It’s just not knowing. It’s not knowing, it’s the uncertainty, yeah you know. And so that’s why you know, it was unpleasant. And I think that would probably be the same for most people…not knowing. And I think also, I was very pleased because I felt that they took my hand and lead me through the process in a very sensitive way, the team and I think that’s very, very important, that they should do that.

 

So did you have the help and support of the breast care nurse as well?

 

I did, yes. I had my own personal breast care nurse.

 

Michael found that things had moved on between his first diagnosis with breast cancer and his second diagnosis. The second time round he had a sentinel node biopsy and a genetic test.

So, 2006 I think it was, I got a piece of paper that really meant it said ‘discharged’ on it, so I had to continue to take the tamoxifen for a little longer and that as far as I was concerned, was it, until 2008. I was… I discovered a lump in my other breast actually. This time I was… I found it, I have to admit, I was not good about checking my breast regularly and I’d actually been doing the decking with paint and I thought, my arm feels tired. And I felt… and I thought, ‘Oh bother, there’s a lump there’. So again I went to the doctor. He said, “Yes, you’ve got a lump”. Went through a similar procedure but I’d noticed that in the eight years that things advanced. There was… all the paperwork was a lot less gender-specific and some of that was due to my comments, and this time they had developed a new way of checking the lymph nodes which… well they do, they look at the sentinel lymph node and they put a wire… they dye, they put some dye into your breast. It goes to the first lymph node and they check it on the ultrasound and they put a wire in there to mark it, and this is the day before you have the operation. You go in and they removed this time just a lump from my breast and the first two lymph nodes which was comparatively minor to having sort of most of them removed. And I recovered even… by then I had retired so it was a lot easier and because it seemed like this, well… a piece of cake, really.

 

In comparison…?

 

I’ve been there before you know, and I’d survived for eight years so this time they put me on a different drug, Arimidex, which I’m still on at the moment because it’s only just a couple of years and I did actually with tamoxifen, have hot flushes which was, which some of my lady, our friends, found quite amusing. I then was sent to… a letter, suggesting I should have a DNA check because I’d had it twice and they were again… this was slightly different cancer so it showed more…. They said a predisposition towards cancer than just breast cancer so I did, I went to a [name of city] hospital and they took a sample and it came back that BRCA2 which is one of the genes apparently that protects you from cancer, was altered which put me a greater risk of breast cancer and prostate cancer.

Michael found the equipment used for the radiotherapy a bit intimidating.He felt that people needed something to distract them if their eye was not to be drawn to a laser light.

 But also there was a feedback about the radiotherapy which was very interesting. They did send a form round and one of the things I actually said to them, that the room… for somebody who’s not used to large pieces of equipment, it was a bit intimidating. It was battleship grey and the only thing when you’re lying down to stare at on the ceiling, is a little red laser light and the sign that says ‘do not look at this light’. And I pointed out to them there was nothing else to stare at and I noticed the second time and a member of staff said, “Oh yes, it was partly because of that what you said”, but they actually now have a TV screen and you’ve got a choice of watching animals or fish or something lying down, which I thought ‘that is an improvement’, so they do listen to people sometimes.

Michael praised the staff for taking good care of him and explaining the radiotherapy well. He always felt involved in his treatment. He compares his two courses of radiotherapy.

 And you talked as well about your experience of radio therapy, so you had that twice. You had fifteen sessions the first time?

 

Yes.

 

And then a similar number the second time.

 

Yes.

 

And did you have a similar experience of the radiotherapy both times? You said the first time was very tiring.

 

I think with hindsight, because I was working in the hospital, I just went along, had my radio therapy… at the end of it, I have to admit I suddenly realised how tired I was and they said, you know, “well you really ought to have had some time off”. But the thing is there’s only two of us in the department and we are on demand all the time to fix pieces of equipment for you know, wards and we’re needed. And being off… I don’t like being off sick anyway and so I think perhaps I found that more tiring than I did the second time, although the second time of course I’d retired and I was a bit older obviously as well, and I didn’t have the pressure of going back to work. It was… no it was fairly run of the mill really. As I say, it was uncomfortable. It made the skin red, it made it a little bit sore, they recommended a cream to rub on it which helped, cooled it down a little bit and there’s no lasting effects you know, apart from the fact that you know, the hair on my chest has disappeared.

 

And has that happened on both sides?

 

On both sides, yes.

 

So, I don’t know if you feel evened up or whether that’s…

 

Well, yes, yeah as I said earlier, sort of at my age I really don’t tend to be so vain about your appearance.

 

And did they warn you about that hair loss the first time round or was that something that surprised you?

 

Do you know, I can’t remember actually. They probably did, they were very, very good. They went through… in the,,, you don’t just appear one day and they sort of give you the treatment. You have the first stage you go and they tattoo you, they put a little tattoo in the middle of your chest and… on whichever side it is they’re going to… they put one on the side so they can sight the laser accurately every time so it hits the right spot. And so you go along and have that done and they talk through and explain to you, and then before you start the treatment, usually the first treatment, it’s… instead of being a half hour, it’s about an hour appointment and somebody takes you into a very cosy little room you know, with a nice sofa, you know chair and cups of coffee and that and talks you through it. I can’t remember what they said about hair loss, they probably did because as I say, they were very, very thorough.

 

That’s nice, so they gave you a really good idea about what to expect.

 

Yes. At no time did I not feel involved in my treatment.

Michael found that his illness soon became public knowledge, and he found that people were very supportive, especially in his local church.

Were you able to talk to other friends or (overtalk) breast cancer?

 

Yes, one I… once it became fairly public knowledge because I didn’t actually hide it there was several ladies who, among our group of friends, who actually said, “oh we’d had it”, you know, and “I had it and I’m fine now so don’t worry about it and that’s… we’re still praying for you in the church” so that was you know, that was all more support. My wife was very supportive and my family who were really I think at one point, wanted to wrap me up in cotton wool and pack me off somewhere. That’s how I think they wanted to do.

 

Did you find that difficult or…?

 

No, no, no, no, they’re… I’m very blessed with my family actually, they’re lovely you know, two lovely grandchildren as well. So, yeah, it just… I think it probably would have been harder if I’d kept quiet about it and not actually told anybody and said, don’t tell anybody except the family.

 

So, did you consider that at all or did you

 

No I didn’t actually… I’m afraid…

 

…just decide almost immediately that you wanted to just tell people?

 

Oh, yes, yeah. Well, people you know, when I said, “I was going to have an operation”, they said, “what for?” And the men’s group that I belong to in the church, they were very supportive and (cough) they… everybody was actually. I didn’t even actually find anybody embarrassed to talk about it. I suppose if they had have been they would have spoken about it. Yeah, I found being open about it was a lot easier. I’m like that anyway, why hide it?