Tom - Interview 29

Age at interview: 54

Age at diagnosis: 50

Brief Outline: Diagnosed with breast cancer in his right breast in 2007. He had a radical mastectomy and ancillary node clearance, followed by preventive chemotherapy, radiotherapy, Herceptin and tamoxifen. In consultation with his oncologist, he discontinued taking tamoxifen because of extreme sleepiness and lethargy. He is now taking Arimidex.

Background: Tom is married and is a university academic. Ethnic background' White British.

More about me...

In retrospect, Tom had been feeling drained and generally unwell for about a year prior to noticing a lump behind his right nipple. He immediately suspected that it might be breast cancer and so he telephoned that day for an appointment with his family doctor. He saw a part-time GP who tried to suggest a course of antibiotics, but Tom insisted on an urgent referral, to which she eventually agreed. A mammogram, ultrasound and biopsy confirmed that he had breast cancer. Initially the shock of his diagnosis brought on a violent, panic response which affected his breathing for two weeks or so.

Surgery was arranged to take place just twelve days following diagnosis. A separate room was found for him on a breast ward, otherwise populated by female patients. He had his mastectomy early one morning, and he was pleasantly surprised to be well enough to go for a short walk when his wife visited him later that afternoon. He was discharged from the hospital the following day, although he still had a drain in his chest for another two weeks. He found the drain - a long piece of pipe inserted in his chest cavity attached to a bag to collect fluid - increasingly uncomfortable. Occasionally the drain leaked, and on one occasion he had to call out district nurses late at night to replace the dressing that held the pipe in place. 

The cancer had spread to around half of the lymph nodes which had been removed, so Tom was referred to another hospital – a specialist cancer centre - for treatment to prevent cancer recurrence. There was a delay of around a month associated with the transition to the cancer centre. His oncologist here was very happy to talk him through the detailed scientific background to treatment options (in contrast to the breast surgeon he had seen), and he was recommended to have chemotherapy, radiotherapy and longer-term preventive medication, which he was pleased to accept.

The chemotherapy treatment started around a week later. This was tough and debilitating treatment, making him very tired and cold, affecting his appetite for food, and starting a stomach upset that has stayed with him, to some extent, for several years. He was prescribed additional medication in an attempt to offset the serious side-effects of chemotherapy. It was necessary to strike a balance between these additional drugs, and this balancing-act was successful in managing queasiness on all but one of six treatments with chemotherapy, but on that single occasion he vomited extensively during the days immediately following the treatment. A particularly unpleasant and painful side effect of the chemotherapy was the loss of skin from his bottom of his feet.  Towards the end of the course of treatment, he developed a queasiness immediately after having the chemotherapy injected, whilst still in the hospital, which he suspected might be partly psychosomatic in origin. This hospital was quite progressive in its approach, and he was offered complementary therapies to have alongside his chemotherapy. He found reflexology to be very effective in preventing this ‘psychosomatic’ queasiness.  He was offered a ‘cold cap’ to wear on his head during the chemotherapy injections in an attempt to minimise hair loss caused by the treatment. The cold cap was very uncomfortable, but it was successful in preserving much of his hair, so he persevered with wearing it. The efforts which his hairdresser made to make the best of his remaining hair lifted his spirits during the treatment. He worked throughout the treatment, and was fortunate to be able to adapt his work schedule to cope with the tiredness, and to minimise contact with people when his immunity was at its lowest. Overall, he found the most distressing aspect of chemotherapy was seeing how upsetting it was for his wife to see him going through the discomfort.

Three weeks of almost daily radiotherapy treatment started a few days after the end of the chemotherapy. The suite where his radiotherapy was administered was much brighter and the atmosphere more upbeat than the chemotherapy ward. Although the treatment itself took just a few minutes, being positioned precisely for the X-ray beam was more time-consuming. He found the sometimes extended delays whilst waiting for treatment – usually caused by some of the X-ray machines being out of order- frustrating. 

Treatment with Herceptin began ten days after the end of the radiotherapy. The Herceptin was injected in a day ward every three weeks over a period of around twelve months. He didn’t experience any very pronounced side-effects, although it became increasingly difficult and distressing to find a suitable vein to administer the treatment. 

Tom started taking tamoxifen in the form of daily tablets at the same time as the Herceptin treatment began. After around eighteen months he discontinued the tamoxifen in favour of Arimidex. He did so, in consultation with his oncologist, because the tamoxifen seemed to be contributing to a profound sleepiness and lethargy that he was experiencing. Whilst on Arimidex he has experienced some degree of pain in his joints.

Throughout the treatment, Tom has been fortunate in receiving very strong and understanding support from his wife, and from his work colleagues. He was also delighted to receive exemplary technical and emotional support from a specialist breast cancer nurse at the cancer centre, who has played a leading role in pioneering such forms of patient support.

 

Tom found a hard lump behind his nipple whilst drying himself after a shower. He was immediately worried because he knew men could get breast cancer. He had also been feeling unwell.

Well, seen from the advantage of looking back in time, I think I'd probably been feeling rather unwell for well over a year. For reasons that were not entirely clear. And I think I may have spoken with a GP at some stage who said something like ‘perhaps you should have a holiday for a change’, or something like that. But I felt - I remember speaking with colleagues and saying 'I feel like shit today' – if you’ll pardon the language - and I have no understanding of why that's the case, I've slept well, I just feel completely drained and just generally unwell. So that sort of sets a background, but obviously I didn't know what the problem was. But, let's see, in around June 2007 I got out of the shower and was towelling myself down and thought what on earth is this in my chest and sort of probed around a bit here. And it really felt like something hard, as though I had a piece of plastic under the surface behind my right nipple. So it was rather disconcerting. And I remember at the time thinking 'oh bugger I think I know what that is'. Cos I couldn't think what else it conceivably could be. Unlike, it seems, large numbers of people out there in the general public, I knew about male breast cancer. 

Tom went to the doctor straight away, fearing that his lump might be breast cancer. The locum GP recommended antibiotics but Tom insisted on having an urgent referral instead.

So anyway I rang up my GP surgery the same day because I was very aware that if this was breast cancer I needed to do something about it straight away. And I suppose I - as you know, I've written about this. And I suppose now thinking about it, again with the benefit of hindsight, my intention in going to the GP was really for that GP to give me a referral to a hospital where I could have some sort of intervention that would explore what the problem was. I didn't expect my GP to be able to deal with it on their own. I hoped to be able to see a GP at my local surgery that I was familiar with but in fact that wasn't possible, and so I saw someone who worked part-time there, a female GP. And this was the first time that I'd met with her before. Although again, as I said in something that I've written, presumably she had access to notes. She knew I was a man of fifty presenting with a lump in his chest, she said something like ‘I'll give you antibiotics to see if it will go down’ - that's a quote. And I thought this was a bad way of proceeding.

 

And I was really quite insistent about having an urgent referral. And - I think this is probably a pretty unusual situation for her, I suspect it's a rather unusual situation for most GPs to be faced with someone - of course I suppose if I had been speaking with one of my, one of the two GPs I more regularly see, then they would have known me far better, and known that I'm an academic interested in these sort of areas. But she - all she had were my notes, which I daresay she'd scanned in a rather cursory way, here was I you know fifty year old man presenting something, median onset for breast cancer for men is much older than fifty, the chances of me - quite possibly she'd never seen male breast cancer before. I'm not sure I knew those figures at the time. I now know them. But that was me trying to do a post-hoc rationalisation of what went on, and trying to write about it I suppose. But what happened was a sort of conflict situation which was not heated, it was very cool, but I was very insistent, and I remember there was a sort of extended pause of silence during which she was sort of looking down at her notes as though trying to decide what to do. And I remember saying, ‘Well, what do you propose?’ At that point she just capitulated, and said, ‘Fine, I'll give you an urgent referral’. And she didn't seem particularly happy about it, but I was just very insistent, and I think just sort of relieved that I'd got my way. Because, I don't think it was a sort of macho thing – you know I - I don't generally talk to my GPs in this way, usually we have a sort of civil conversation and say, ‘Well what shall we do?’

 

Is that because you felt inside yourself sort of sufficiently concerned or sure, or something that really was the matter?

 

Well obviously I couldn't be sure that it was cancer, but I knew enough about cancer to know that an urgent intervention would be needed if it was cancer, and therefore it seemed to me to make sense to have some sort of diagnostic procedure that would allow me to know one way or the other.

Tom asked the radiologist to give a commentary to help him interpret the images on his ultrasound. The radiologists' reactions during his tests led him to expect bad news.

The actual diagnostic procedure was sort of pretty unpleasant. Of you know biopsy being taken with a thing like a sort of industrial stapler, and ultrasound, and I remember being in a darkened room with the ultrasound and the radiologist being completely silent, and me encouraging her to give a commentary on what she could see on her screen, because just like any sort of electronic diagnostic apparatus there's a matter of interpretation and although it's second nature, obviously, it's a bit like someone looking at a radar screen, isn't it- second nature for someone who does it every day, it's a lot of sort of spots and funny shapes and things for anyone who's not familiar with it on a day-to-day basis. So I tried to encourage her, and she looked extremely grave and said ‘it was not good news’. And then sort of strangely went away in another office and allowed someone else to show me out. A sort of very peculiar, alienating situation.

 

Right. So she didn't actually say at that stage that she thought it was breast cancer, she just gave an indication through using words like grave.

 

She didn't use grave, that was my word, I think she said it was ‘not good news’.

 

And I remember the radiologist’s last words she said was ‘good luck’, when I left. Because she had actually shown me this structure, and I had no idea what the structure was other than it was quite possibly cancer, I didn’t… you know I didn't know whether there were other things it might look that on x-rays, because I'm not a trained x-ray radiographer. So, she looked very uncomfortable so, putting all these things together, things didn't seem very good. 

Tom described the intense panic he felt when he was told his diagnosis. This lasted for a couple of weeks but had gone by the time he'd had his mastectomy.

And it’s extremely frightening having cancer, something I haven’t mentioned, which I should’ve mentioned was that when it was diagnosed, I had extremely severe sort of panic response.

 

Right.

 

In which I could scarcely breathe for a couple of weeks. It was really distressing. In fact it was the most distressing, taking into account the whole trajectory of having cancer.

 

And so you described this feeling of extreme panic and not being to breathe. How long did that last and how did that- when did that begin to change and...?

 

I think that sort of started to go away as the surgery approached. And after the surgery was over there was- it had gone. So it was between being initially diagnosed for a couple of weeks say. And it wasn’t associated with a conscious sense of panic or anxiety. It was just a visceral, violent response to the shock. So I actually had a pain right in the centre of my chest. Which really didn’t go away. And a sense of being- laboured breathing.

 

That sounds extremely unpleasant.

 

It was very unpleasant, yeah.

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.

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.

Tom had no problem getting Herceptin and few side effects. He describes what it felt like to be on the day ward whilst getting his treatment.

Was it difficult for you- were you offered Herceptin or did you ask for it?

 

I’m HER2+, the characteristic of my tumour, which means that another way of attacking it is to block off its ability, again to gain sustenance, this time by means of Herceptin. Of course there was a controversy about the funding and all the rest of it. I don’t know- there was never any suggestion that I wouldn’t have it. I guess the timing was very- I was very lucky with the timing in the sense that I came along after all the fights had been fought, and before we had a sort of melt down in the- (laughs).

 

In the NHS?

 

The economy and who knows what’s to come. So, I went along to the cancer hospital again, only this time to the day unit. And another silo with another culture and another different patterns of sounds and movements and so on. And, I believe there can be some adverse side effects which show up at quite an early stage when it’s being administered, so it’s generally administered to start with over a relatively long time period. I think it was- was it three or four hours it was administered over. So it was suggested I should take plenty of books and things with me, which I did. And administered through a cannula in the back of my- was it in the back of my hand, I think it was yes. So I have a drip and sitting there, in my hand, and the arrangement of the day ward was in little bays with four beds or chairs sort of facing each other, two facing another two across a central corridor. And it wasn’t only people receiving Herceptin, it was people coming in for all sorts of other things, some of whom looked terribly unwell I should say. So it was quite distressing to see how unwell some people looked who were on, various sorts of drips and treatments. And, I’m not sure I was aware of any particular side effects of Herceptin. It was suggested that I might have a slightly sort of fluey feel. And, for a day or two after receiving it and it was difficult to tell really. I think possibly I could identify something that might vaguely be like that, but there was nothing very pronounced.

 

The biggest problem was the fact that my veins became so knocked about, so to all- so over a year, every three weeks. Towards what, nine, ten months in, they had huge difficulty, satisfactorily putting cannulas into me. So, and it wasn’t helped on one or two occasions I had quite a junior person who wasn’t very skilled. I think the most it took was six goes to get a cannula into me. And they had to then sort of- work their way up my arm until they could find a bit of vein that they could work with. So that was pretty unpleasant. That was the most painful and sort of distressing, aspect of the whole treatment

Tom describes the test that he had to monitor his heart function whilst on Herceptin.

And of course, Herceptin can impact on one’s heart functioning. So on top of that, every now and again I’d go and have a MUGA scan so called, to- you heard of MUGA scans?

 

No

 

MUGA might be an acronym for something but I can’t remember what it was. In essence they injected one with a radioactive dye, which stuck to one’s heart, and then they could take a gamma ray photograph, which- and look at the functioning of one’s heart. And in fact most, well maybe not most but quite a few of the other patients that I know, that I met along the way are still, am still in touch with, their heart was affected by having Herceptin and they needed to take medication in perpetuity to support that functioning, so yet another pill to take.

 

Mmm.

 

But towards the - I think it did have an impact on my heart, but my heart recovered. So I don’t need to- I think I’m probably quite strong.

 

Survived all… this barrage of different treatments-

 

Yeah, I was probably quite strong to start with. 

Tom compares the sort of tiredness that he felt whilst on tamoxifen with the 'leadenness' that he felt after having chemotherapy.

So the sleepiness you had with the tamoxifen, did that come on quite suddenly, would you be-?

 

No, no. I think it- none of these things came on quickly, it was just…a general sense of being tired. I think I mentioned earlier when we were chatting that I started thinking about, in order to try and articulate this for medical professionals, I started to try and think about, well what word is the best way of describing this cause there were different dimensions. There’s a sort of when I, for a long time after the chemotherapy, I felt a sort of leadenness in my limbs, so if I actually went for a walk it was a real drag to try and drag myself along. That’s gone now. But I still do have fatigue, which is not quite the same, which is a general sense of not having slept. So it’s, I’ve not been refreshed. So I wake up in the morning quite often feeling as though I haven’t been to bed. And that’s still with me now. So I had the surgery in 2007, you can do the sums. It’s now three and a half years later. But then there’s also sleepiness. Of sort of nodding off, or being unable to keep one’s eyes open, which is like another dimension and these things overlap and interact in peculiar ways. But they’re not quite the same.

Tom felt that there weren't really too many options about his treatment. He wanted the doctors to 'throw everything' at his cancer.

So did he then discuss the options for treatment then?

 

Well, there wasn't very much in the way of options, you know, there was a necessity to throw everything at it, basically, and I had no problem with that. So there wasn't very much discussion about options because I was very happy - I encouraged him to throw everything at it. So it was agreed that I would have radiotherapy and chemotherapy and then longer-term preventative medication. So I had six cycles of chemotherapy, and I had radiotherapy over, you know every morning over a couple of weeks. And then they got into the longer haul of - well, sorry, I had Herceptin as well. So I had Herceptin for twelve months, and that coincided with having tamoxifen.

Tom's hospital offered patients complementary therapies. He had reflexology during some of his chemotherapy session and found that his nausea completely went away.

Because we talked with my angel of mercy [breast care nurse] about what might be done and she did mention that the hospital, which is quite progressive in many ways, and is, does encourage patients to have various holistic therapies, or complementary they use, that's the word they use. And so, reflexology. Is that right?

 

Yes.

 

Yes? And so I thought I'd try that, and it proved wonders. It was extremely effective, in offsetting this queasiness I had. Actually toward the end of the administration of the chemotherapy and immediately afterwards.

 

So there was a reflexologist actually there working on your feet as you were ..?

 

So the reflexologist came and worked on my feet for an hour or - say an hour - whilst I was having the chemo, and the nausea completely went away. And I think then probably - so I think probably the timing was - I think the queasiness started around the third or the fourth, and I think the last two sessions I had the reflexology, and that removed the queasiness. So that was actually - I mean I actually really love having my feet massaged, and so it wasn't a problem. So it quite sort of appealed to me. So there I was, listening to my John Coltrane -

 

I was wondering if you were listening to John Coltrane for that time!

 

And she was, and they were working away. Interestingly, I found that there seemed to be as many different versions of reflexology as practitioners. I don't know if that's my own personal experience but there was one in particular who was extremely into it, extremely competent in the sense that I felt as though my feet became a keyboard for her. And she was really very precise about working her way around my feet, as though every spot of my feet was like a key on the keyboard. Others seemed to be a bit more vague about exactly what they were doing, and although it was actually quite pleasant, it didn't seem - there was a sort of sense it wasn't so precise. But whatever, the two occasions in the chemotherapy ward, I think it was two occasions, were very successful.

The people at Tom’s Herceptin group ‘clicked’ and wanted to stay in touch. He thought there was an ‘asymmetry’ in the availability of support groups for men and women.

And you were telling me earlier that you still met up sometimes with your group of Herceptin ladies.

 

The Herceptin ladies, yeah. Yes that started because I… ran a sort of discussion group, to help out a bit of research that was going on at the hospital. And so I had a focus group effectively. And so we just stayed in touch with each other cause we also enjoyed meeting up.

 

So that was something that arose out of that, rather than being so scheduled for appointments for your Herceptin, at similar times to the same group of women-

 

One of the women was having Herceptin about the same time as me. But of course although the initial treatment was over an extended period of a number of hours, subsequently it became a quick thing and I had it in about half an hour and then I could go. So the chances of bumping into people at random were diminished. I think one of the women that I met up with, who strangely enough is not someone who I’m so in touch with now. She hasn’t been to the last couple of meetings. I did encounter in the day ward. But the others were put together by people that were doing research. So I’m not sure, I think it was just a convenience sample, I’m not sure they had anything in partic- because I remember we were all at different stages, we’d either finished it or just starting it or some had some characteristics, some- one I remember had another - was in a trial for another Herceptin type drug. Because her cancer had another sort of characteristic that could be targeted. And a whole range of ages, from, one who looks very young but she has an eighteen year old son I think, someone who works for Social Services in the city, but looks remarkably young, so she looks in her late thirties. I think she might be just into her forties. To someone who was in her seventies. Perhaps two women who were in their seventies. One of whom had had cancer twice separated by twenty years. So it was quite a spectrum. Everybody was very, very enthusiastic about staying in touch. And I think some of them belonged to support groups and others didn’t. But they just- thought we all clicked you know, so it was just- that’s how it worked.

 

Nice when these things arise sort of quite spontaneously like that.

 

But I think I was saying to you that there are in this locality a lot of support networks [for women], none of which I’ve ever been invited to join. So there is the gender asymmetry and that stuff- and I suppose, I can imagine circumstances where perhaps I would quite like, would like to be part of some sort of support network. In fact I don’t. But I could imagine if I had’ve wanted to be, then I might have felt a bit sidelined, when I found out that all this activity was going on. 

Tom felt lucky to have a 'wonderful' breast care nurse who made him feel like a personal friend. He admired her attention to detail and how she always tried to improve the support offered.

She is wonderful. She's wonderful. And everyone thinks she's wonderful. And - I don't know how common this is. But she's obsessive in the best possible meaning, and has an extraordinary memory, and deals with you know hundreds or thousands of patients and manages to make everyone to feel as though she's their personal friend.

 

It's a real gift to be able to -

 

And she has certain extraordinary gifts. So I’m, I think I was very, very lucky. And speaking to lots of other patients, she's held in extremely high esteem. So she was pioneering an approach to ringing back people on a regular basis and following them through the drug treatment. 

Tom had very supportive reactions from everyone. People were sympathetic and concerned about how he was.

And did you choose to share your diagnosis with people at work from quite an early stage?

 

Yeah, I was never remotely furtive about it. I… everyone was totally supportive. I mean I told you that there was the odd person who for some reason didn’t get to know, but I don’t quite know how- but I think you know, it was very- you know there are networks around the school so within a short space of time everyone… you know most people knew. And people were very- I think people handled it really well. So there wasn’t the sense of, there wasn’t the sense of going over the top. To being you know terribly sympathetic and worrying and caring, that they were just very supportive. Which is exactly what one would want of course.

 

Yeah.

 

It’s quite interesting that a number of people, a number of colleagues from out- some of them outside [place], or old friends, took to ringing me up. You know I hadn’t heard from them, but I was exchanging Christmas cards or whatever, and they took to ringing me up to see how I was. And I think it’s actually been quite upsetting to me that they’ve stopped ringing me (laughs).