Ductal Carcinoma in Situ (DCIS)
Feelings about the diagnosis of DCIS
Many women we spoke with were shocked when they were diagnosed with DCIS because they’d had no signs or symptoms. They had been for a routine mammogram and were fit and healthy, so were expecting nothing to be wrong. Some felt that, had they had symptoms, they might have been more prepared for the diagnosis.
Most women were told by a breast surgeon that they had DCIS, what this meant and the treatment they would need. Many said that the doctor drew a diagram and explained that the DCIS was contained in the milk ducts. Some women said the doctor did not use the term DCIS but said they had precancerous cells, calcifications, non-invasive or early breast cancer. One woman said that the doctor explained to her that it was ‘not cancer as you might know it’ and that DCIS could take years to become invasive. Whatever terms were used, however, hearing that they had DCIS was still shocking for most. As one woman put it, ‘Just the word cancer’ frightens most people because of what they have heard or read about it. Some said they felt numb, scared or frightened, a few saying it felt ‘surreal’. One woman said she immediately blamed herself because she used to smoke. Several said that, whereas usually they were quite chatty, on hearing the diagnosis they became speechless and subdued.
The word 'cancer' frightened Jacky. She knew nothing about DCIS and desperately wanted to understand what it was.
The word 'cancer' frightened Jacky. She knew nothing about DCIS and desperately wanted to understand what it was.
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I went into this little room and they told me that I had cancer in situ [of the right breast]. Now the only word I heard was cancer and I was on my own, I didn’t have anyone with me and I thought, what are they saying? Cancer, what do they mean, what do they mean? I’ve got cancer? I’ve got cancer? And when they said, “cancer in situ” I didn’t know what they meant so I said, “what’s cancer in situ?” And they said, “oh, it’s a very early cancer very early forming and it’s something which will, if it isn’t addressed, will become a larger cancer. So it’s a very early form and you, it’s nothing terribly to worry about.”
But I was really frightened because it was something that I’d never touched upon before, I had no idea. Cancer was not in my world and, suddenly, here I was being told I had got cancer. And that was the only word I heard and I was frightened and I didn’t have any information. I didn’t know where to go to get information, I needed to know what cancer in situ was and nobody could tell me.
So I came home and I was so frightened and I didn’t know who to turn to or who to speak to, I just screamed and screamed. And I phoned up the nurses and they just kept telling me the same thing and I thought, well, yes, that’s fine but it’s not you that’s got the cancer, it’s me, and you keep telling me this and I need to know more.
Those who were recommended a mastectomy were often particularly shocked because it was completely unexpected and sounded very drastic treatment for something that wasn’t ‘proper’ cancer. Some were told that they could have breast reconstruction at the same time, but all this information in one go was sometimes too much to take in. There was usually very little time between diagnosis and surgery and, for some women, this was difficult because they were still coming to terms with the diagnosis.
Di had been fit and healthy and was shocked to hear she would need a mastectomy for a precancerous condition. She was being given lots of information but could hardly take it all in.
Di had been fit and healthy and was shocked to hear she would need a mastectomy for a precancerous condition. She was being given lots of information but could hardly take it all in.
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The day that we received the results I was told that I had DCIS and they explained very briefly what it was. That technically it was pre-cancerous which was a relief and in the next breath they said “So we’re going to offer you a mastectomy,” and that was appalling. Because you assume that if something was pre-cancerous so they can do what I believe they do with cervical cancer and you know just zap those cells. And I must say the bottom of my world dropped out at that moment so that was a very difficult moment, from having a month earlier felt completely clear of any risk at all to being offered a mastectomy for something that wasn’t even truly invasive cancer as far as they knew.
I think at that point they asked, I then spoke to a nurse, a breast care nurse who I must say I didn’t find that helpful because it was, they were racing on with details of when the operation would be, what I would need to take into hospital. They gave me leaflets about radiotherapy and underwear for prostheses and that really was much too quick for me. And I felt quite horrified and quite repelled by the whole process. So they gave me an appointment for a fortnight so obviously I could do my thinking.
Some women found it difficult to concentrate on the rest of the consultation after being told the diagnosis. One was also preoccupied by worrying about her car park ticket expiring as she had been in the hospital for longer than she’d expected.
In the days following diagnosis, some women said they had difficulty concentrating on their work or everyday activities and had tearful moments. However, others found that keeping busy at work or at home was the best way to cope. Several women reacted by finding out as much as they could about DCIS but were dismayed to discover that it was not fully understood by doctors. One was angry at being ‘dropped into this uncertainty’ and said she needed to be able to understand her disease in order to deal with it. Others, though, said that after reading that DCIS has a very good prognosis, they felt reassured or positive.
Some women said that learning that DCIS was precancerous was ‘a comfort’, a few women saying that they had feared the worst when having tests. For these women, being told they had DCIS was a better outcome than they had expected. Others said they felt reassured knowing that it was a very early form of breast cancer, ‘not full blown cancer’ or ‘caught very early’. Some women who would be having a wide local excision were glad their surgery would follow soon after diagnosis and they would be discharged from hospital on the same or next day. With hindsight, a few women said that having DCIS had just been ‘an interruption’ because they had got on with life as normal soon afterwards, one woman saying, ‘it’s been a distraction really, something to be dealt with rather than something to agonise about’.
Jane reacted by looking for more information and found it reassuring. She advises other women not to spend too much time looking for information on the internet because it can be worrying.
Jane reacted by looking for more information and found it reassuring. She advises other women not to spend too much time looking for information on the internet because it can be worrying.
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To be honest that day I did feel there’s something wrong but I haven’t got life threatening cancer. And my initial reaction always when I’m not quite sure about something is to go and find out information. So I was finding out information in a very, quite a relaxed frame of mind and also quite a truly curious frame of mind. Not a kind of, “Oh I’m anxious I’m worried. My God, what have I got,” frame of mind. And everything I found out increasingly reassured me. So I probably, maybe a bit optimistic about it. If I’d been wrong, if it had been breast cancer, it probably would have hit me doubly hard because I’d had this kind of terribly, this is fine, relaxed attitude. We can do something about this.
It’s just been, to me it’s been a distraction really, something to be dealt with rather than something to agonise about. I’ve done, I’ve looked at lots of websites and got lots of brochures that were useful and all the rest of it. They were, I got lots of information that was very useful at the time, deciding which kind of reconstruction to have. And deciding whether I wanted nipples or not and so on. But I was very conscious that it’s probably not a good idea to spend too much time on the web because almost by definition I think the people who are posting blogs or posting to websites are people who are anxious about something. And if you’re not careful you can get anxious where you weren’t anxious before and, because this is the kind of centre of concentrated anxiety. So I try to just dip in and use it for information and then come out again. And that was tremendously useful.
Beverley feared the worst because the doctor found a lump when she was recalled after a routine mammogram. She was relieved to hear that, unusually for a lump, it was non-invasive.
Beverley feared the worst because the doctor found a lump when she was recalled after a routine mammogram. She was relieved to hear that, unusually for a lump, it was non-invasive.
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After I left the hospital my daughter tried to keep my spirits up. She's a very positive person and I went back to work because I thought the best thing to do was keep working, try not to think about it. And I worked up till the day before I went back to the hospital and I had to wait an hour after my appointment date, which seemed like an eternity.
And finally got in to see him and he said to me, “You’re a strange one.” I always remember that because I thought to myself, well my family could tell you that, I am. He said, “You’ve, it's come back as non-invasive cancer.”
Even though there was a lump?
Yes. Yes. He was certain it was going to be invasive. And the fact that it was non-invasive he was, thought was very strange. And I can remember I must be the only person who’s ever been told that and I breathed a sigh of relief, because I just thought, “Thank God for that.”
Several women said that, after receiving the diagnosis, they found it hard to talk to other people about it and bottled up their feelings, sometimes to protect others. One woman said she coped very much on her own because she didn’t want to have to deal with other people’s reactions of upset or pity. Other emotional reactions included difficulty sleeping, a need to eat comfort food, and no longer feeling in control of life.
Some women said that, although they were shocked, they were more worried about their partner or children. A few were anxious about telling their husbands because they'd had their own health problems to deal with. Some women were worried about how their children would react, especially if they were in the middle of exams. A few were reluctant to tell children or were concerned about the best way of telling them (see Telling other people). One woman said that she ‘just got on with it’ after her diagnosis but it was harder for her best friend, who felt helpless.
Jane said the doctor explained what DCIS was so well and calmly, she thought it couldn't be very serious. She wondered if there was any need to tell her husband.
Jane said the doctor explained what DCIS was so well and calmly, she thought it couldn't be very serious. She wondered if there was any need to tell her husband.
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I went back to talk to the doctor. And she said, “Well we think that this is probably DCIS.” And I didn’t even catch the name of it the first time. And then she started to try and explain what it was. And I was just interested really. I still didn’t feel particularly threatened by it.
And in fact I think she did such a good job in terms of being nice and being calm, that I really didn’t think it was serious at all. And for a long time I was saying, “Well look can we just sort this out and I don’t think I need to tell to my husband anything about this, we’ll just sort this out.”” And at one point she said, “Well actually Jane I think you will need to tell your husband about this and I don’t think we can just sort it out without him knowing.” And that’s when I thought, “Oh this could be quite serious.”
Sandy said she 'never shed a tear' when she was diagnosed. She wanted to get on with the treatment. In some ways, it was harder for her best friend.
Sandy said she 'never shed a tear' when she was diagnosed. She wanted to get on with the treatment. In some ways, it was harder for her best friend.
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Funnily enough I never ever got worried or frightened. And all my friends have said to me, “Oh, you’ve been so brave.” And I said, “No, it’s not a question of being brave.” When it’s happening to you, you just get on and do it. If it’s happening to your friend, your mother, your sister, then you fall apart. You know, because you’re worried and you’re helpless. But when it’s happening to you, you just do what they tell you.
I was shocked because I couldn’t feel anything. And I thought if you had breast cancer you could feel a lump. But I couldn’t. So I still didn’t really believe that it was cancer.
And at this appointment did you take someone with you?
I did. My best friend.
How did your best friend react at the time?
She went white. She was more shocked and disturbed than I was. Because, as I say, when it’s happening to you, you just get on and do it. But when it’s happening to someone you care about, it’s worse because you feel helpless. And you’re worried. And you think they’re going to be ill. They’re going to be in pain. They’re going to die. But when it’s happening to you, you just … well I just didn’t think like that.
Yeah. So you didn’t react?
No. No. And I still haven’t … never shed a tear.
Never?
Never [laughs]. No. Perhaps I don’t find value my life very much. I don’t know.
Everyone’s different. I mean, you sound as if you just had the attitude of getting on with what you had to get on with.
I just thought very positively. And then they were doing what they could for me. They were doing it very quickly. And I literally just put myself in their hands. And if they told me I had to be at this hospital, that hospital at that time, I was just there. And just let them do what they had to do next, you know. Get it out. Get it cured. And let me get on with life.
Some women said they started to think about the emotional aspects of their condition only after their surgery, or that the emotional impact of the diagnosis long outlasted the physical impact and that their feelings were not always acknowledged. One said that, although she’d felt positive whilst getting through treatment, she became depressed later when she had to deal with several other problems. Another discussed how, many months after her mastectomy, she still sometimes found it hard to accept that she’d had cancer. One woman said that, months after her diagnosis, she was still trying to get her life back to normal with the help of counselling and life coaching. Some women worried, especially at first, that their DCIS might return in the future or it could appear in the other breast.
Beverley felt depressed after surgery, when she had time to think about everything she'd been through. Going back to work helped.
Beverley felt depressed after surgery, when she had time to think about everything she'd been through. Going back to work helped.
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I became very depressed for a few weeks and I did think to myself, “Beverly it's non-invasive. What are you making all this fuss for?” But like all other women who've had breast cancer, I’ve had major surgery. I’ve had to put up with a lot of changes to my body. But after about five, six weeks the doctor had said to me did I want tablets and I said, “No, it's something I've got sort in my own brain.” The breast care nurse did say, said did I want to have counselling? And I said, “No, I'll sort it for myself.”
And after ten weeks, no twelve weeks, I started to go back to work. I thought best to get back to normal. So I went back to work and I actually, was probably one of the best things was to get back and just to start to feel you’re back to normality.
Because at home were you were just thinking things over and over?
Yeah. That's the trouble. At home you don’t, you know, you're just, there's so much housework to do and that's never been one of my most favourite things anyway. So no it was nice to get busy and do things and start to be normal again.
Can I go back to one other thing because a few women have mentioned that, that once they were diagnosed and then they had surgery things happened quite quickly.
They do.
But afterwards that they felt, “Oh my God, I feel…”, you know, they felt…
Terrible…
… depressed.
Yes.
… because it was afterwards that you’re at home with all this time on your hands.
Yes, that's right. I think most women do. From what I've seen on most of the websites, most women, the minute they're, any of their treatment has finished, whether they've had to go through everything, chemotherapy and the works, it's the minute the treatment finishes you feel, I suppose you've kept yourself going, you’ve had to keep yourself going, you've been, you know, the brave person and whatever and done everything that was necessary to be done.
And then all of a sudden you're just left to it. And you're on your own. And you sit at home and you think, “Oh my god.” You know. And it’s the first time you've really probably had a good chance to think about it, I suppose. Up till then you're just going from one appointment to the next appointment, to getting an operation done, to getting something else done and you don't really think about it. And then, and for my own personal thing, I just felt it was something I had to work my way through.
After surgery, Agnes felt a sense of loss because part of her breast had been removed.
After surgery, Agnes felt a sense of loss because part of her breast had been removed.
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It’s strange that for me the whole thing of losing some part of me physically felt like going through some sort grieving. I don’t feel physically that much less now, it’s really just a mental bit, that this was a part of me who breast-fed two children. Been through breast feeding twice and now it’s kind of been taken away, it’s a bit like a loss but I’m not saying I didn’t want to lose it because I wanted to bring the operation date forward if possible rather than delay it, to get it out of the system before it can go ballistic.
It’s just a bit like going through the same stages when you go through a normal, grieving period. Of denial, of not being able to believe that it’s happened to you. To pretend that when you’re asleep, you’re still the same person as you were before the operation. Then all you have to do is just turn on your side and reality kicks in. If somebody could come up with some solution, what to do between those hours of the night when you get up and everything is dark, dark, dark, so black in your head, that would be good.
Some women said that, though they felt shocked and frightened to be diagnosed with DCIS, they also felt guilty because it was ‘only’ DCIS and not invasive breast cancer. One of them found it difficult to join a breast cancer support group because she felt a ‘fraud’. Several pointed out that, although they ‘only’ had DCIS, they had still needed to go through the same treatment as women who had invasive breast cancer.
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.
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.
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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.
Sandra feels that it is sometimes harder to be diagnosed with DCIS than invasive breast cancer, especially for women who need a mastectomy.
Sandra feels that it is sometimes harder to be diagnosed with DCIS than invasive breast cancer, especially for women who need a mastectomy.
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You feel a bit like a poor relation ‘cos it’s like I’ve only got DCIS. You still have all the emotional baggage that goes with it, especially if you’ve had the mastectomy. In fact sometimes if it was an invasive cancer, sometimes, the breast care nurse said to me that its sometimes simpler because you could have a wide lump excision, you just follow the protocol for chemotherapy or radiotherapy and, its like the lady who I said was a receptionist, she’s said, “I didn’t have as much to go through as what you’ve gone through.” Although I wouldn’t want chemotherapy I have to say. But she didn’t find that too bad. She said, “I haven’t gone through as much as you’ve gone through,” she said, “you’ve lost your breast, I really wouldn’t have wanted to have done all that. And she hasn’t.
Although the chances of recurrence after DCIS are small, one woman we spoke with said she was extremely shocked when, after an annual mammogram, she was diagnosed with DCIS again. Another said she was frightened after being diagnosed with invasive breast cancer soon after having DCIS, which was found at a follow-up appointment.
A doctor talks about DCIS and recurrence.
A doctor talks about DCIS and recurrence.
Sex: Male
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A lot of women wanted to know, with DCIS, what were the chances of getting a recurrence and were they more likely to get a recurrence if it was high grade DCIS?
I think the second point is probably easier in the sense that if their cancer was DCIS and it was of the high grade type, then they do have a slightly higher chance of a recurrence in the future.
And the recurrence will usually come close to where the original cancer was in that breast. It shouldn’t recur elsewhere in the body, that can happen but it’s very rare. A new cancer in the opposite breast is a small extra risk for any patient with cancer and is not recurrence as such, but a brand new cancer. So high grade, yes more likely to come back than low grade, providing at the start you are on a level playing field and the initial abnormality was fully removed. And the way that you judge it’s fully removed is that under the microscope the edges of the piece that people have had removed were clear of cancer, so called “clear excision margins.” In that situation there is still some risk of cancer coming back in that breast in the future, hard to put a figure on, in very broad terms with a broad number, a large number of people, maybe 2% per year, but a number of things affect that.
Yeah. And women also wondered when they’re thinking about making treatment decisions whether there was more chance of having a recurrence of DCIS or an invasive breast cancer if they had a wide local excision or a mastectomy.
The ability for the cancer to come back in the same breast will naturally be much less if the full breast was removed at the start. Occasionally small spots of cancer can come on the skin on that chest afterwards, but that’s much less likely after the removal of what was only DCIS to begin with. So people’s understanding of the ability of it to come back after a mastectomy is much lower is correct.
Now against that people who have a piece removed, conservation surgery, most of those don’t get recurrence afterwards in that same breast. And their survival in the future is just as good as the lady that had her breast removed. So there’s no difference in the survival of the two groups. So people have to weigh up a little whether they themselves are opting for an excessive treatment like a mastectomy for a small area of DCIS when their chances are very good, and even if it did come back it would still not be going to shorten their life.
Last reviewed July 2017.
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