Eileen - Interview 24

Age at interview: 62

Age at diagnosis: 60

Brief Outline: Eileen was diagnosed with DCIS in 2002 and had a mastectomy. Afterwards, she questioned the value of breast screening and chooses not to have routine mammograms.

Background: Eileen is a retired writer and single. Ethnic background / nationality' White British

More about me...

Eileen was diagnosed with high grade DCIS in 2002 at the age of 60. She was shocked at the diagnosis and was on her own when given the news. She was also told that she would need a mastectomy and some lymph nodes removed.

 

After her diagnosis, Eileen searched for more information and started questioning the value of routine mammograms for DCIS. She felt that it was confusing to be told that, if breast cancer was found early, there would be less medical intervention and wrote to the NHS Breast Screening Programme. She had lots of questions and also made an appointment with her breast surgeon, but felt the consultation was rushed and that she had not got the information she needed. She decided to get a second opinion and was particularly concerned about why her lymph nodes would be removed even though she had DCIS.

 

Eileen said that, rather than feeling ‘lucky’ when told that DCIS was non-invasive, she felt shocked and numb as well as ‘embarrassed and guilty’. She was unhappy with her mastectomy scar, which she said was large and ‘unsightly’, and felt confused and disappointed because, after surgery, no DCIS could actually be found. Eileen wondered if the DCIS cells had been removed during the biopsy and whether there had been any need for a mastectomy at all.

 

At the time of interview, Eileen had been working with a life coach and counsellor to help her get her daily life back on track, which she felt had been chaotic and hectic since the diagnosis. She was uncertain about attending for screening mammograms again because, if DCIS was diagnosed again, she was unsure how she would feel about it and about having surgery for a condition that might not progress Eileen also said she would have liked more information about the possibility of being diagnosed with DCIS before going for routine breast screening.

 

Eileen was interviewed for the Healthtalkonline website in 2003.

Eileen was shocked to hear she'd need a mastectomy for DCIS and to learn that DCIS is a complex condition that doctors don't yet fully understand.

The other shocking thing was that he told me, and this is very significant in the DCIS diagnosis, was that because it was, the white spots that they had found were over an area of five centimetres – was it five centimetres, yes, no they were four centimetres, that's right, four centimetres – it was just too big to be able to cut out enough tissue to remove it all safely, so they would have to remove my whole breast. Well this was a profound shock, because all the information and literature I had ever seen which had encouraged me obediently to go every three years for my mammogram, the screening program, was catch it early, and you'll have less surgery, less treatment. And this was the exact opposite. Not only was it catching it early – like a small lump – but I didn't even have a lump. I didn't have any symptoms whatsoever, nothing. I felt fit and fine, until this diagnosis, and I've felt ill ever since. And this is the opposite, it seems to me, of what medical intervention should be about.

 

So I've been, ever since then I've felt there's something not quite right about the way in which we're dealing with DCIS, particularly as it is diagnosed in the screening program. If somebody's gone to the screening with no symptoms whatsoever, this is a profound shock. I have discovered subsequently that almost half the people that are diagnosed with DCIS do have some other form of breast symptom, whether it's found through a screening program or they've taken themselves to the doctor, doesn't really matter. Sometimes the symptom they've got has no connection with the DCIS, sometimes it looks like there may be a connection. But at least half the people who are diagnosed with DCIS would never have previously been diagnosed, except through the screening program.

 

So it does raise questions about whether it's really a good thing, because what I discovered, I'm jumping around here, but after I got the diagnosis I went away and rushed around trying to understand about this strange DCIS, to discover that in the medical world it wasn't free from controversy about what to do about it, because it's thought that some, maybe a lot of DCIS, never develops into breast cancer proper anyway. And so the shock of having a mastectomy proposed for some early form of breast cancer, that might not even develop into breast cancer anyway, was just adding to it all.

Rachel didn't know until afterwards what type of biopsy she'd had and would have liked more information beforehand.

I had no sense whatsoever that these white spots could really be cancer. I just was left with the impression that there was something that they had to investigate. I suppose, looking with hindsight, why didn't I think or ask if it might be cancer, but I didn't. It just didn't occur to me. I was alerted to the fact that this procedure [biopsy] was unpleasant, and could have rather a bad effect on me, and so - I was extremely busy at the time, and I rang up subsequently and said could I leave this 'til after Christmas, because I thought it could take a couple of days out of my week recovering from the effects, and I just couldn't afford that. "Oh, no problem whatsoever", they said. So again I felt that it was nothing to do with cancer, because all the understanding about cancer I have is that if you have cancer everything moves into a fast gear.

 

So after Christmas I rang and said, "Look I've still not got over the hump" - I was writing something and I really couldn't be interrupted. "Okay, no problem, just tell us when you're ready", and so I finished the important piece of work I was doing during February and so I rang up and fixed my appointment to go for this exploration, some form of biopsy, I think they called it.

 

I went and that was when I discovered quite what the procedure was - which was unpleasant, and while I was just waiting for them to set up all the machines and equipment, a doctor, a radiologist doctor was present, a woman, who said something about ductal carcinoma in situ, which I'd never heard before, and it was - I think she said - I just remember the words, she might have said, "Well we're looking to see whether or not it is", or "It looks like it is" or something, and I had no idea what it was.

 

I don't recall at the time even asking her what it was, because I was just absorbing this new name. My recollection is rather vague at this point because it's now nineteen or twenty months since then. But I had to go back about eight or nine days later for the results, or maybe six or seven days later for the results. But in the intervening period I can recall looking up on the web about this ductal carcinoma in situ, and discovering to my horror that it was actually breast cancer. And I was shocked that I had gone from the November, and this was now the beginning of March completely ignorant about what it was that they might be looking for. I was reeling with shock and by then of course I was really very worried.

Eileen was unhappy with how her mastectomy scar looked and felt but didn't want a reconstruction.

That's a big issue for me and that's my big upset about my mastectomy, is that I'm not convinced that they needed to take so much tissue away, and it's horrible, what's been left on my chest. It's nothing to do with that I haven't got a breast, it's not that issue at all and I'm still very happy that I didn't want [reconstruction] and still don't want at the moment, I might change my mind in future but I can't imagine ever wanting to have more surgery to create an artificial breast.

 

And you said you'd got quite a big scar? How do you feel about that now?

 

I hate it.

 

As when you first saw it, or have your feelings changed over time?

 

They've got worse really, because I'm now questioning, I didn't to start with - because when I first saw it I didn't know how it was going to end up, because there was swelling, and there were tubes, and you know, and the scar was very raw. But now I know what it's like, now I know what I'm living with. And it's painful, and sensitive. It's painful in a sensitive kind of way. It's uncomfortable to touch, and it looks horrible, and it doesn't feel right. It feels tight and numb, and I can't imagine what it's like with a reconstruction, where you've got tissue that's been brought from your back or your tummy, and all the discomfort there, and foreign material inside as well. I can't imagine that that feels any better than what I've got. So I'm baffled that women find it okay.

 

But some say they do, but maybe they're much more concerned about physical appearance, than about how their body feels, and I'm not. It's the other way round for me. Of course I care about how my body looks, I don't like the way it looks. But I'm much, much more concerned about how it feels.

Women with DCIS need to be put in contact with each other to help dispel the confusion and reassure them that they are not alone.

It's so important to create ways for women with DCIS diagnoses to be able to get in touch directly with quite a number of other women who've had DCIS diagnoses. That is what we most need at the time of our greatest shock and trauma, and I'm sure, like me, that most, many women who've had a DCIS diagnosis, would be very happy to talk to other women who have just been diagnosed, just to tell them what it was like for them, where they got their information and how they dealt with these kinds of things. And to know you're not the only one who feels in utter confusion, at feeling not relieved at having had it found and not always telling you that you should feel lucky and a success and fortunate, when you are feeling terrible, but also feeling guilty that you're not grateful for having had it found when everybody else is upset because they've had an invasive breast cancer. And particularly women who have had all the original surgery and treatment and then they've had secondary cancer. It is extremely difficult to know how to relate in conversation with such women.

Eileen felt embarrassed and guilty. Although invasive breast cancer is more serious than DCIS, she still had a mastectomy and found it hard to feel lucky she 'only' had DCIS.

One of the things which a lot of us are told when we are diagnosed with DCIS, is that we are lucky. We're very fortunate, we are the success story. I was actually told that by my pathologist, that we are the success story. When you are feeling absolutely depressed, like you've been hit with a sledgehammer, not only at having a breast cancer diagnosis, but also losing your breast or having quite major surgery to your breast, and possibly even radiotherapy, and with this unknown thing which might or might not turn into breast cancer, and you feel these conflicting emotions. On the one hand of being, yes relieved that they don't think it's invasive, but it might be. They won't know actually until they do the surgery, so that sword is still hanging over your head. But at the same time, people telling you that you should feel lucky, when you don't feel lucky.

 

And the other thing is that you certainly feel embarrassed and guilty. I've made contact with other DCIS patients who feel in exactly the same way, a fraud. People say - people know you've got this breast cancer diagnosis, and they are all concerned as they would be if you had real breast cancer, but then you feel a fraud, because you've got this thing that is pre-cancerous or early cancer, and there's almost a hundred percent cure rate. All you've got to do is have it taken away and you'll be okay, and then people also say afterwards - are you still in remission? But remission is a completely irrelevant concept to DCIS, because you never had breast cancer in the first place.

 

So there's such a difficulty in relating to the general population of caring, concerned people who get the wrong impression altogether about what you've been through. And that's a mismatch, which is really difficult. And there's also a terrible mismatch between DCIS patients and patients with real breast cancer. Because people with real breast cancer are seriously worried about whether or not it's invaded the rest of their system. And they would give their eye-teeth, wouldn't they, to have a DCIS diagnosis, so why are we feeling terrible about it? It's a really difficult emotional thing, and I've met a number of, I've contacted a number of DCIS patients who, like me, find it really quite difficult to discuss breast cancer with women who've had other breast cancer diagnoses, and not DCIS.

Eileen was extremely worried about having lymph nodes removed and wondered why it was necessary for a precancerous condition.

At some point, I can't recall exactly when, in this frantic time, it may have been after I had the second opinion, I then wrote to my surgeon and faxed him the letter with some more questions that I had. By then it was why he was proposing to take lymph nodes away when DCIS was all about non-invasive cancer. There might be invasive cancer but they would find that out after I'd had the surgery and wouldn't it be better to just remove the tissue and only attack my lymph nodes if they discovered there was invasive cancer after I'd had my mastectomy. And so these were the kind of questions I had. So I faxed him this letter and I put on the top my email address. I didn't actually say I'd like to do this by email, but I thought at least I'll show I've got an email address, and he faxed me

back the same day a reply, a good reply to my letter and actually said, "If you would like to communicate with me by email I'm very happy to do so", which was a thrill, an absolute thrill.

 

And from then on my relationship with my surgeon and all these problems about information went into a different gear. We weren't over all the problems, but I had numerous exchanges with the surgeon, and he was so quick at responding. He would look at his emails between surgery operations as far as I could see. And he was extremely good, and bit by bit I got through some of my questions. But it was not without its trauma, because a week before the surgery I still had some important questions, which I never got to the bottom of, about the lymph nodes, and that was what - I was far more terrified about the surgery on my lymph nodes than I was about losing my breast. And that was because, although I didn't want to lose my breast, it wasn't going to interfere with the rest of my body. Taking away lymph nodes was actually going to interfere significantly with my immune system, and I'd read all these dreadful things about the possibility of lymphoedema, and what's the point of doing this if it's not actually essential?

Eileen had several appointments to discuss her pathology results because, after surgery, doctors were unable to find any DCIS in what they had removed.

After the surgery, when they had removed my breast tissue and lymph nodes, they were going to give me the results the week after surgery, or the week after I came out of hospital, and I had an appointment fixed, and it was cancelled. I had two subsequent appointments cancelled, to see the surgeon, because they still didn't have the results, and they weren't telling me why they didn't have the results. Of course I was frantic.

 

And then finally I went with my sister, and the surgeon said he was embarrassed because they still didn't have the results. We said, why, and he said they can't find what they're looking for. Even though they've done, now, considerably more analysis than they ever would. And I said what are they looking for, and he said DCIS, and they couldn't find any DCIS. They couldn't find any DCIS in my breast that they had removed. I subsequently had two, possibly three, quite long sessions with the pathologist, looking at my own cells under the microscope, trying to understand why it was that they said they'd found DCIS in the original biopsy, and not being able to find any DCIS in the breast they removed.

 

I'm still not really a hundred percent sure that I understood it, but I can't think of any other explanation than they removed from my breast in the biopsy the only DCIS cells there were in my whole breast. They were two tiny spots of less than one millimetre. And I had my whole breast and five lymph nodes removed for that. Which is why I'm deeply concerned about being faced with this white spots diagnosis on my other breast, when even when I was diagnosed with threatening, high grade, wide extensive DCIS, in the end, when they removed my breast, they couldn't find it at all.

Eileen felt there should be more research into how different lifestyles could affect the development of DCIS cells.

One of the things that puzzling for DCIS patients is it's called sometimes by some people pre-cancerous, sometimes early cancer, so you're not really sure whether it is or isn't cancer. Then you begin to discover, if you look into it a bit further that there are big question marks about whether it's pre-cancerous or early cancer, that it will develop into invasive cancer, and there's some evidence that maybe quite a large number of women, maybe half or more, who have DCIS never go on to develop proper cancer. It just goes away of its own accord or just doesn't develop into anything.

 

And as a result of that, that adds to women's concerns about whether, if they change their attitudes and changed their lifestyles, they could actually stop it from developing. Which is even more significant at this stage than when it has become invasive because you've got the added risks, as well as if it's already invading, of how you're going to stop it. Personally, for me, if I had invasive cancer I wouldn't have these questions at all about the surgery, because I'd be so concerned about doing something about the cells that have already escaped moving around.

 

But if they haven't escaped and there's some evidence that they might never, even of their own accord, escape, well shouldn't there be more attention paid to what's going on in your life as to whether you're the kind of person who might, you may be the person, with a bit of changes here and there, it might be worth seeing whether or not it does [just stop developing]. Since what they say anyway - it's so early - it's not a rush, that on the whole - and if they're willing to give you lumpectomies and not mastectomies, (and lumpectomies do have quite a lot of recurrence where DCIS, and indeed invasive cancers as well, and the statistics now indicate that whether you have a lumpectomy or a mastectomy doesn't seem to change the mortality rate) there seems to be even more reason for thinking about whether there are surgical alternatives to surgery and all the other medical interventions, in terms of lifestyle changes, for DCIS diagnoses for women. I feel it should be an option that should be explored and I feel it isn't explored at all.

If DCIS was found again, Eileen would be unsure what to do about it, so hasn't been for screening. She has stopped taking HRT and hopes this will reduce her chances of a recurrence.

I'm so uncertain about what I think about the DCIS diagnosis, that I don't want to put myself in the position of having DCIS diagnosed in my other breast through another mammogram screening, when I haven't made up my mind what I would do if I had the white spots diagnosed again. Because I haven't, I still have so many questions about DCIS in my mind, that I'm having to put off going to have a mammogram on my remaining breast. And I should have had this, according to my surgeon, a year after my first mammogram, when the DCIS was diagnosed in my other breast - or at least the white spots were first spotted. And that was November 2001, well if you recall I didn't have the biopsy for another four or five months.

 

So I didn't have the DCIS formally diagnosed until the March 2002. Then I had my surgery in the April, and the surgeon originally wanted me to have my other breast re-mammogrammed a year following the first mammogram, which was November 2002.

 

But that was just a few months after my major surgery so he agreed, let's leave it to the anniversary of the diagnosis, which was Spring this year. But the more I was investigating the DCIS and coming to terms with what had happened to me, the less convinced I was about the whole way in which they were approaching it. For me, the HRT might be the thing that would encourage it not to happen. It might have nothing to do with it, I just don't know. So I've had to put off [going for another mammogram]. I didn't decide I was never going to do it. I put it off until I'd got my life back together again. And actually I still haven't got my life back together. I'm still not able to do some of the things that got stopped when I got the diagnosis.

 

I do occasionally, not regularly, I do check my breast. Not in any kind of technical way, but I'm breast-aware. And I haven't actually felt anything. And I suppose in my mind all the time, whenever I do that and there isn't anything, I can see the thought going through my mind - oh it was probably the HRT that did it, and I'm not taking HRT now, so I should be okay, and I'm past the menopause and all the rest of it. But of course, the longer you get past the menopause, the more there seem to be diagnoses of breast cancer, so I'm still confused actually. 

 

I suppose the real issue is that I don't want to put myself in the position of having a diagnosis of plain and simple DCIS white spots when I'm still unconvinced that it's worth knowing. That's the point. I'm not sure yet that it's worth knowing. In terms of the screening program, well to start with I thought what's the point of the screening program? It's producing all this unnecessary suffering.