Ductal Carcinoma in Situ (DCIS)
Information about DCIS
Everyone is different and people vary in how much information they want, when they want it, and where they get it from. Some women said they were happy with the information they received from health professionals when they were diagnosed with DCIS, several saying they had lots of verbal and written information from the breast care nurse, including leaflets. These leaflets were also helpful sources of information for friends and family who wanted to learn more about DCIS.
Pauline wanted relevant information at each different stage of treatment. She got it from various different sources.
Pauline wanted relevant information at each different stage of treatment. She got it from various different sources.
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Well all through the time I just wanted to know about breast cancer. Anything about breast cancer. And I asked Google, which is one of the search engines, to send me a news alert on the breast cancer. So daily they would send me information from November, when I started doing it. And that was very interesting because there it tells me all the latest research on Arimidex and tamoxifen and all the latest ways of finding breast cancers without having to operate. This one thing was talking about electricity, some kind of electricity beams going through and they’re not having to operate with people because they’re able to find out. And another thing is kind of like a pap smear that they do for people with cervical cancer, something similar they’re doing in America and it seems brilliant what’s happening, it’s all so new.
So they don’t need to operate?
Oh they mightn’t have to operate, yeah, yeah. Or some other needle thing that goes in and takes these cells out and examines them and tells people that they’re abnormal or they could be cancer instead of having to operate, instead of having to do all that, you know, biopsies and all, which would be great.
Yes. So was there information you wanted that you felt just wasn’t there or you had questions which never were really answered?
I was amazed how much I could get on the internet I was getting far too much in fact, I was quite happy with it, I found out a lot about radiotherapy and would have liked to have had more talking from patients about radiotherapy. I didn’t find much on people who had been through it, so I was searching, searching and I was looking for the side effects of radiotherapy. I wasn’t finding an awful lot from ordinary people. I was finding it from, you know, hospital reports on the effects of radiotherapy. I would have loved to have somebody say “this is the way it affected me” you know, I’d like that.
Did you see any of the videos on the DIPEx website?
Yes, I did find some there, yes.
So did you ever feel there were questions that you had that weren’t answered or what were your, you know, what were your questions on your mind?
The main thing at the beginning was that I wanted to find as much as I can about DCIS and they gave me a leaflet, which was great. And then when I was put on the tamoxifen I wanted to find out as much as I could about tamoxifen and they did give me a leaflet. And my sister’s a pharmacist so she was able to give me some more, which was great. And every procedure I wanted to go through, I wanted to find out more about. I wanted to find out about anaesthetics, well I didn’t really find out an awful lot about that. I wanted to find out more about what food I should eat before or after operations you know, things like that.
Some women felt that they weren’t given enough information when they were diagnosed, several saying that, even if it had been given verbally, they were in too much of a shock to take it all in. Many who felt they didn’t have enough information looked for more, often on the internet. Others requested another consultation in order to ask questions.
Beverley felt she wasn’t given enough information. She wanted small amounts of information at different stages and wished she’d known about Breast Cancer Care when she was diagnosed.
Beverley felt she wasn’t given enough information. She wanted small amounts of information at different stages and wished she’d known about Breast Cancer Care when she was diagnosed.
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When I was diagnosed with DCIS I was given no information on it. I had to search the web. I couldn't even, I had to recall, try to recall what he said it was and did actually remember for once and spent my time searching the Internet to try and find out information about it because there is nothing and you're given nothing and have no idea. I mean I was just told it was non-invasive cancer.
Were the words DCIS mentioned at all?
Yeah. He did mention DCIS. But they didn't mention exactly all about it. I didn't really know all about it and I could have done with some information on that. One of the things that I didn't do either and I've only just done, is ask for my histology report. And I've only just found out exactly the extent of it. I think they realised I wanted to be drip fed the information and I've gradually drip fed myself the information. I didn't want to know it all at once.
I actually didn't find out about the Breast Cancer Care website until, and there's also another one BC Pals that I go onto. But I didn't know about it. I don't know why I didn't hear about it. You are given a lot of information at the beginning and though I scanned all the information, I don't recall ever seeing anything about Breast Cancer Care website and the chat rooms. And I wished I did in a way because I think it would have been a great help. Definitely, without a doubt. And it's quite nice to be relatively anonymous on there and be asking, able to ask new questions. No, I would say that that's one of the things they need to put in the pack that you get from the hospital, be something I could probably bring up and mention when we do things.
One woman, who was shocked to be told at diagnosis that she would need a mastectomy, said she was given too many details that day about the operation and what would follow. She said that this had been unhelpful as she could not take it all in.
Information about DCIS
Some women said they looked for information before they were diagnosed because they were concerned about needing a biopsy and what the outcome might be. One woman said she phoned a breast cancer charity and wanted to know more about ‘chalk’. Other women said they tried to find out more about calcifications or calcium deposits. Some said that they would have liked more information about the diagnostic tests for DCIS because this might have prepared them better for having them.
Agnes would have liked more information about the core biopsy and specific information about DCIS. She advises women to get as much information as they can.
Agnes would have liked more information about the core biopsy and specific information about DCIS. She advises women to get as much information as they can.
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For anyone who’s just been diagnosed with DCIS, from your experience, is there any advice you would give to somebody?
Apart from finding out as much information for yourself as you can, because what you can get from the NHS isn’t going to be too specific, it would be useful if anybody who did have a biopsy for somebody to sit down with them and explain what the different abbreviations mean and what is the diagnosis really. Because for them every abbreviation means something but for an ordinary person, they don’t and just finding the meaning of these out could be very traumatic at times if there’s nobody to explain the numbers and the abbreviations, what they actually mean and what it means to you.
So when I came across this four-page information leaflet it was just a general information sheet really. You want to know more, I think. Everybody wants to know their own personal diagnosis. And be pushy basically. Don’t just think that well they know better, the medical profession know what they are on about, but I think it’s important for everybody, for your own sanity really, to find out what’s going on in your own body.
Only one of the women we spoke with had ever heard of DCIS before so, for many other people, finding more information about it was very important. Some women said they would also have liked more information about the different grades of DCIS and about the likelihood of it developing into invasive breast cancer. With hindsight, several wondered if invasive breast cancer would be a more ‘straightforward’ diagnosis than DCIS because so little is known about how DCIS develops.
Patricia had invasive breast cancer and DCIS. She feels that making treatment decisions for DCIS are harder because it might not develop. She would have liked more information on what DCIS is.
Patricia had invasive breast cancer and DCIS. She feels that making treatment decisions for DCIS are harder because it might not develop. She would have liked more information on what DCIS is.
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I think if I was found to have DCIS in the other breast, I would be devastated because I think you’ve got to make more decisions if you’ve got DCIS. If it’s a lump you know it’s got to go, if it’s DCIS do you wait and see whether it becomes cancer because, you know, as far as I’m aware nobody really knows do they? Whether it will or not. And do you then go through yet another traumatic mastectomy, reconstruction? That bothers me more than the fact that I may have breast cancer. Because then you’ve got to make decisions.
So you think it’s harder to be diagnosed with DCIS than invasive breast cancer?
Yeah, because, well, I mean obviously it’s hard and if it was in your system it would be devastating knowing that you’ve got to go through with the chemotherapy round and whatever. Because I’d had a lot of health problems, the idea of chemotherapy was really worrying me because I really didn’t think I would cope. But, I just, but it isn’t until now that I really know what DCIS is.
So you, you had some information from the doctor that said DCIS?
No, not really. It was just on a letter. It was the letter that he sent to the GP and to the surgeon just saying what, discussing the treatment that he was going to give me, that you know, that was going to have tamoxifen for two years and exemestane for three years.
That was the first then you kind of realised?
I’d actually saw the letters DCIS yes.
Did you look for more information? How did you find out more because you sound like you would know quite a bit now?
I’ve been looking on the breast care backup website and whatever, and reading odd little bits. And the areas, I don’t know, I think perhaps they could’ve reassured, when the surgeon drew the picture of my breast and did specks all over it, in hindsight that was a little bit of an exaggeration, you know, perhaps somebody could’ve talked me through it a little bit better.
Some women said that, before their own diagnosis, they hadn’t known that symptomless cancers existed but felt that this was important information that all women should know. Similarly, some women hadn’t known that breast cancer could present with symptoms other than a lump. One woman, who had been diagnosed with DCIS and Paget’s (a rare cancer that affects the nipple), said she never knew that nipple discharge could turn out to be Paget’s Disease or cancer.
Most women said they would have liked more information about recurrence after treatment for DCIS, some wondering whether DCIS was more likely to recur if it had been high-grade. Some also would have liked to know more about the risk factors for DCIS.
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.
A doctor talks about the risk factors for DCIS and breast cancer.
A doctor talks about the risk factors for DCIS and breast cancer.
Sex: Male
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Women also asked what were the risk factors for DCIS, is it the same as for invasive cancer?
It is, it’s the same for any form of breast cancer. And most of it, as far as we know, occurs by chance, it’s just an unlucky thing, not anything that the patient has brought on themselves. When you look at the background, you can look at things like how many menstrual cycles they’ve had in life, as in age at first period, or number of children they’ve had, or number of children that they’ve breast fed. Most of these things tend to be small factors. For most ladies it’s just a chance happening, nothing that they’ve ever brought on themselves, it’s something that they’ve been unlucky enough to have.
Several women said they would have liked more information about Hormone Replacement Therapy (HRT) and DCIS, particularly if they’d had to come off it after being diagnosed.
A doctor explains why women who have DCIS are advised not to take HRT.
A doctor explains why women who have DCIS are advised not to take HRT.
Sex: Male
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A few women also asked whether there’s any link between HRT and DCIS? Because once they were diagnosed they had to come off HRT.
When you look at the safety information for any hormone treatment, if you’ve got a breast cancer diagnosis it can usually be written on the information that comes with that hormone preparation such as HRT or indeed the pill, that you come off the hormone because you’ve got a diagnosis of breast cancer.
There’s a slight association between HRT and the development of a breast cancer. Most ladies who are on HRT who are so unlucky to get breast cancer were going to get it anyway, even without the HRT, but there will be some extra cases of breast cancer for ladies on HRT, particularly if they’re on it longer term. And the advice that they’ll get when they are diagnosed is that you will now need to come off the HRT because it might give some extra risk of promoting cancer in the future.
And it’s a very tough time because ladies are often going through the whole upset of the diagnosis and what’s going to happen to them, and it’s the time they often least need to come away from something like HRT which they had often taken because they had bad emotional or psychological symptoms at the time of menopause.
Information about treatment
With hindsight, some women said that they would have liked more information about surgery for DCIS. This included information about what would happen when they went into hospital, the wire localisation procedure for wide local excision, the general anaesthetic, looking after the wound at home and how much time they would need off work.
Some women questioned the need for a mastectomy for DCIS, several saying they would have liked more information about why a mastectomy was recommended, whether DCIS treated by mastectomy was over-treatment, and whether there were any alternatives to surgery, including specific diets. Women also acknowledged that some of the information they would have liked was simply not available because DCIS is not fully understood by doctors.
Eileen felt there should be more research into how different lifestyles could affect the development of DCIS cells.
Eileen felt there should be more research into how different lifestyles could affect the development of DCIS cells.
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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.
Patricia talked to her breast care nurse because she was worried she'd had a mastectomy unnecessarily. She was reassured by the nurse and after reading her pathology report.
Patricia talked to her breast care nurse because she was worried she'd had a mastectomy unnecessarily. She was reassured by the nurse and after reading her pathology report.
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In the end I found that I couldn’t do this very, very hard job I had as well, and so I actually went out on ill health. And it was only then that I started to question what sort of cancer I’d had and I joined an organisation that assisted me with that information.
I was told that I had a cancer that was in the duct and that because it was in the duct, it was really a cancer that wouldn’t have spread anywhere. And it was, I’d got, it was got in time anyway and nothing to worry about, and I was very unlikely to ever get cancer in the breast again. Although there was a lot of calcification around the outside of the breast as well, but at the time I had the breast cancer I never questioned any of it.
I rang the breast cancer nurse and asked if she had any information on the sort of cancer I had and she did. It was just an A4 size paper and in this it did say that it was a ductal cancer, it didn’t spread and there was no problems with it, and you know, basically that’s what it was.
So I started to think oh well perhaps I’ve overreacted here about the cancer. I actually thought oh I feel stupid now because you know I didn’t know. And so I am worried about it, but then I got a bit more information off the Internet and decided that I would ask a few more questions and so I rang the breast cancer nurse again, it was a different one but they were all very helpful. And I asked if I could possibly have a bit more information. The pathology report, which was something I’d never asked for. My GP had just had one letter really and it didn’t give him very much information. Because he said to me “Oh they’ve caught it early, that’s great,” you see.
And when I got the pathology report I was able to look at it in a different light because it actually gave me a grade number which rung bells right away, that this wasn’t quite as a non-spreadable cancer as I thought. And so because of that I rung the health, the breast cancer nurse back, and she’d already given me a little bit of information. But she did say I could ring her again if I wanted more. And so we did have a good discussion about it.
And really I realised that actually I don’t think that they know a lot about this, well I know they don’t know a lot about this cancer. And so really I suppose they’re not supposed, I suppose they wouldn’t want to distress us anymore or distress me anymore by at that time not giving me this information. However I think perhaps I may have looked at the whole issue a little differently had I had it. And I’m very lucky to have a pathology report because my GP doesn’t have a pathology report.
Kath wanted more information about the kind of DCIS she had. She would have liked a copy of her pathology report and to talk to other women with DCIS before surgery.
Kath wanted more information about the kind of DCIS she had. She would have liked a copy of her pathology report and to talk to other women with DCIS before surgery.
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The care in the hospital was very, very good. And it turned out that I had high grade DCIS, widespread. It was behind the nipple as well as being right across here. It was all round here. So, you know, they’ve done the right thing with me, you know. And it was starting to, micro-invasion they said. A couple of areas of micro-invasion. But what confused me afterwards was that I didn’t get the full results, the full pathology results because they wanted to kind of get it out of the way before Christmas I think. So I went in and he’d literally had a phone call from the path lab that day. Went in and saw him in the evening and he said, “Well, you know, you’re clear da, da, da, da, da.” And you’re just so thankful for that then, and still not feeling very well and very, very tired.
So I think it was after New Year I phoned the breast cancer care nurse, went to see her and asked to see the pathology. They weren’t keen to let me to see that, I had to really insist on that. I’ve not been given a copy of it and I would have liked to have a copy of it. Because again, you don’t take it all in. I took my mum with me that day to get all of that.
But not enough information. I mean, I actually had to, they didn’t tell me about anything, the Breast Cancer Care thing, the website has been my Godsend. That’s where I’ve spoken to people. I wasn’t put in touch with anybody. I don’t, luckily I don’t know anybody that’s had cancer. Friends, family, anybody. Never mind this kind of breast cancer, you know. And it would have been extremely helpful to have spoken to people about this before going through everything.
Many women who had breast reconstruction said they would have liked more information about the different types of reconstruction before they made a decision. Several also said that they benefited from talking to other women who’d had similar surgery and, often, from seeing how their reconstructed breast looked (see Breast reconstruction using: an implant; an LD flap; and a DIEP flap).
Some women wondered why they needed no further treatment after surgery, while other women they’d known, heard or read about had radiotherapy or hormone therapy, a few saying that they would have liked to have known whether they were hormone receptor positive. They wondered why women with DCIS often received different treatments and why doctors have different approaches to treating the same condition. Many women who had completed their treatment had unanswered questions about DCIS in general or the particulars of their own case, and some said they felt it was too late to ask.
A doctor explains why women diagnosed with DCIS are given different treatments.
A doctor explains why women diagnosed with DCIS are given different treatments.
Sex: Male
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A lot of women wondered why some of them were treated by wide local excision and others by mastectomy.
Yes. It is quite a shock to patients isn’t it, that you can have something where everybody says your future outlook, your prognosis, is ever so good; your survival should be very good, but then in the next sentence suggest that you need a breast removed to achieve that.
And even for, if we call them “ordinary cancers,” in other words invasive cancers, the type of surgery or the extent of surgery that is done is not related to how aggressive the cancer is. It is related to its width. And again, in very straightforward terms, what the surgery is trying to do is to remove everything that’s cancerous. So if that area that is cancerous is a narrow piece, then taking a piece of the breast will be adequate. If the cancer change in your breast extends over a wide area, then removing a piece won’t achieve removal of all the cancer, nor will it allow afterwards a good cosmetic outcome for the patient because so much of it would have been removed that the breast wouldn’t look right.
So people can still have a wonderful outlook and survival in the future but need a mastectomy now because their cancer is wider than a piece or wide excision, as it’s called, would allow.
Some women, after reading a bit more, also wondered if they were being over treated if they had a mastectomy for DCIS.
The mastectomy, as we were mentioning earlier, is to solve the straightforward question that any patient would say, “I’ve had my operation, have you removed everything that was wrong within the breast?” And if you can do that by taking a piece of the breast, conservation surgery as it’s called, then you’ve achieved your goal. But if it’s over a wide area, then you need to remove all of the area that’s abnormal and that may mean a mastectomy. And there isn’t a way around that, you can’t, if you like, just take part of the area that’s wrong and reassure patients that that’s been enough. Because it won’t be of benefit to them.
So the mastectomy, the surgical option is based very much on the width of the tumour. The over treatment therefore as in how a patient balances the loss of their breast compared to the worry, would they develop cancer in the future that would shorten their life, is ever so difficult, because none of us really can say from one patient how they’re going to progress or what’s going to happen to them over time. Everyone varies slightly and it’s a very good question, it’s the crystal ball saying, “What’s going to happen to me in the future?” And none of us have the ability to be able to predict that.
Yes. And some women who really were shocked and distressed at the thought of having a mastectomy wondered whether they could take hormone therapy instead of having surgery, and just be monitored by mammographic screening every year say.
Yes, if we again take that from it’s start in the sense that we are presuming that that lady has only DCIS to begin with, and therefore we assume that the picture we have on the x-ray is giving us the full information, which it will in many instances, but there maybe some of those patients who already have some invasion and therefore already have some invasive cancer. So we are categorising them all the same from the start, without being able to say for certain that that is the case.
The role for anti-hormonal tablet treatment, the best of which or the most well known of which is tamoxifen, is usually when you’
Information about breast screening
Some women said they would have liked more information before going for breast screening about all the possible outcomes of screening, including DCIS. They felt that this might have prepared them better for the possibility of a DCIS diagnosis. Other women, though, felt that information about DCIS before screening would be unhelpful because it could cause a lot of unnecessary anxiety. Several women questioned why screening was offered for a disease that is not fully understood, though others wondered how long it would have taken for their condition to be diagnosed had they not gone for screening (see Views on breast screening).
Beverley feels that information about DCIS before going for breast screening could be frightening. People only want to know about cancer when they are diagnosed with it.
Beverley feels that information about DCIS before going for breast screening could be frightening. People only want to know about cancer when they are diagnosed with it.
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Do you think that there should be more information about DCIS before people go for breast screening because often it’s found through mammograms.
It is, yes. It's often found through mammograms. Yeah.
Or would that just frighten people?
I think that would frighten people. I don’t know. I think that once you've had a diagnosis of DCIS is the time to actually hear. I mean, I don't know that it would frighten because I suppose in some ways it’s a comfort in a way to know that it's not an invasive cancer. But I don't think that people would take that in somehow. I don't know that people would, I don't think you actually know an awful lot about cancer until the point that you're actually diagnosed. So I think once you're diagnosed you want to know things, but I think beforehand you don't really take it in.
Sources of information
Women got helpful information from various sources, including books, leaflets, medical journals, the internet, health professionals, cancer charities, friends, and other women with DCIS or breast cancer.
Some women said they got a lot of useful information from their breast care nurse and found it helpful that they could ring her any time that they were concerned about their diagnosis or treatment. One woman was given a reading list by a breast care nurse and found all the information she needed in a book about breast conditions. Another, who had private healthcare, said she had monthly phone calls from her breast care nurse and found these extremely useful. She wanted lots of information at every stage of treatment because she found it easier to cope this way. Other women said that the information they received helped them to know what to expect at each stage. One woman said she phoned a breast cancer helpline for information rather than her breast care nurse because she wanted to be completely anonymous.
Janet got all the information she needed from her breast care nurse, including the title of a very helpful book.
Janet got all the information she needed from her breast care nurse, including the title of a very helpful book.
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Did you feel like looking for information?
Questions, questions. Oh, that’s right I got a big book, somebody Love’s book, Dr Love’s Breast Book. Now how did I find out about that? I’m trying to remember, because I didn’t, the local library didn’t have it. So, I went to [place name] Library who had got it, this big fat book. And it is an American book written by a woman surgeon, everything you could possibly want to know about breast problems and how to deal with them, very up to date information. I know you’ll want to know where I heard about this book. Ah! Breast nurse gave me a list of reading matter and it was quite a long list. But I’m glad I picked on, I only read this one book and it was very helpful. It answered, really, all the questions that I had got about absolutely everything that I could think of. So Dr Susan Love’s Breast Book I think it was called, yes.
And that looked at benign conditions as well?
As well, yes and clear drawings, some photographs and clear diagrams and drawings of various problems. And so, and it talked about one of the latest things being putting die into your lymph system, so that it makes it easier for a surgeon to see which lymph nodes to take out. But it reduces the amount of lymph nodes you’re going to have to have taken away for testing.
Have you got any other questions? Or over the years have you had any questions about breast cancer or pre-cancerous cells or surgery? Any questions that at the time you wished you had an answer for? Or even now, things that have never really been answered?
Not really. I think reading this big fat book made me think it had covered everything. I mean most of the time I forget about it, you know, I don’t want to think about it. That’s the trouble I don’t want to put my head in the sand. So, but I can’t think, I know I could have, the breast nurse has been very good over various queries that I had. She seems to have got a lot of experience.
So you can ask her anything?
I can ask her anything any time. She’s very accessible, yes.
Agnes would have liked much more information when she was discharged from hospital. She recommended a book that she found very helpful.
Agnes would have liked much more information when she was discharged from hospital. She recommended a book that she found very helpful.
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And then being discharged at hospital and still not given any sort of information about what you should look for or what could happen or if this happens, that is quite normal and please don’t bother us with phone calls. I don’t know. I just found it, everything prior to the operation went so whoosh, you know, in a sort of unbelievably fast timescale and then suddenly you’re done, you’ve been through the operation and then you’re left kind of dangling without any sort of further information, and basically it’s, you’re on your own kid. You know. You’re now grown up enough to look after yourself. We’ve done what we had to, you know. Your off our list now. So, you just carry on with your life now.
I ordered a book which is called ‘The Breast Cancer Book’, which is written by a journalist who had breast cancer and whose second operation was the full mastectomy with reconstructions, and she teamed up with her Macmillan nurse and they came up with the idea that it would be good to write it all down, every day events that happened in her life. I started to read that but, because again her case is much more serious than mine, I read it only a chapter at a time not the whole book in one go because it’s heavy going. But it’s a very good book and I highly recommend it to everybody.
What’s the title of this book? It’s possible that we might be able to put it on the website.
It’s called The Breast Cancer Book.
By Val Sampson and Debbie Fenlan. Right.
And there was a website as well, where people wrote about their experiences which is now re-launched somewhere else.
OK, that’s one to recommend.
It was good stuff. With a lot of useful information at the back and all through it.
Information helped Pam cope better. She read as much as she could and also found the monthly phone calls from the breast care nurse helpful.
Information helped Pam cope better. She read as much as she could and also found the monthly phone calls from the breast care nurse helpful.
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Then she [breast care nurse] says, you know, “Will it be all right if I phone you up from time to time to see how you’re doing?” And they do. And they let you talk and they ask if there’s anything more that you want. So that was very good. I found that very helpful. And so I sort of got lots of phone numbers and things that way.
And when he [consultant] said to me, “Go away and research this now” because he knows that’s the kind of person I am, actually the lady at BUPA, she said to me, I said, “Some people don’t understand my need to know. A lot of people think, you know, you’re better off not looking into it too much, you’re frightening yourself. Don’t get reading too much. You don’t want to know too much.” And I said, “I am the opposite. I feel more in control if I know. I want to go into this with my eyes open. Make my own choices. I want to feel, I don’t want to feel afterwards, ‘Oh, if only I’d read that, if only I’d looked that up.’” I could have gone down a different route and it’s too late now because once it’s cut off, it’s cut off.” Everybody I came across I was questioning, which was the same with my mum, that’s why I knew so much.
And she said to me, she’s the first person who’s every said it, she said, “You’re obviously a person who feels more in control if you go seeking information.” She said, “Some people do, you feel that you’ve got some control over this.” And I said, “You know, you’re the first person that’s understood that.” Because up to that point most people kind of, “Ooh, don’t read that, you don’t know what you’re reading. Oh, that’s too technical.” You know, or “That’s going to worry you, that’s going to frighten you.” And I thought, “No it’s not. I need to know.” And she understood that. Plus the fact that her own sister had had breast cancer, so she was a good one to talk to.
And I was talking to her about things like the scar and what I’d look like and she said, “Well my sister looks like this,” and, you know, she was reassuring, because she’d actually seen her. “And it’s not too bad, she still wears a low neck dresses,” and all this sort of thing. I think that’s the kind of thing that you want to hear from somebody who’s actually been through it or has a relative that’s been through it and can say, “I’ve seen the scar, I’ve seen her still in her nice dresses.” And, you know, it helps you get the things into perspective.
So they were very good. She was very helpful. And one of the other organisations was Breast Cancer Care who I spoke to. And they sent me leaflets and pamphlets and things. And one of the ones that they sent me, it was Cancerbackup I think, sent me one on radiotherapy. And I started reading that.
Although most women were happy with the information they got from their doctor, a few wanted a second opinion. Several women said that, until their own experience, they didn’t know who the different healthcare professionals were, a few saying they would have liked more information about the staff that were treating them.
Ann wanted more information from doctors and felt asking questions was important.
Ann wanted more information from doctors and felt asking questions was important.
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I think, as I mentioned earlier, I think for me I would love to have had a booklet about breast screening and, you know, the type of doctors you were seeing, what they were trying to look at, the whole process. Whether I just missed out on that I don’t know but I do feel quite strongly that, you know, that it did all, it’s a little bit mish-mashed with me. And, as I say, it may have been Christmas but I think people should be given a good, well-written booklet, not just saying things that normally, you know, ‘everything’s all right, occasionally we find this’ but, I mean, I think is it, I have got one upstairs. What is it, Backup or something, that’s produced one. And I found that weeks, months afterwards and I thought this is what I should have been given when I went into that.
I do think good information is important. Don’t, I mean, it’s, explain and don’t feel defensive if people are asking you why that. I mean, you know, medicine is built up on all sorts of knowledge and statistics but, you know, they’ve learnt that so I don’t see why they shouldn’t justify why they have to, you know. And there are variations in things, I’ve realised that now. You know, if I’d gone somewhere else for my operation I might have had a different, I mean I was offered different types of reconstruction but again how do you make your mind up? I don’t know. It’s very difficult. And things like, you know, taking the lymph nodes out, and that isn’t done everywhere now. I didn’t know that. Where do you get that information from? And in fact what do you do with it then is a problem in itself. But I suppose, as I said, people who do that, ask that, must be harder work for the medical people. That’s what I felt. I felt I was being, you know, I was hard work.
Many women used the internet for information and said they found the websites and forums of breast cancer charities particularly helpful. Through these websites, they asked other patients questions, helped others by sharing their own experiences, and some were put into contact with other people in a similar situation. Getting information this way was often important because women could stay as anonymous as they wanted. Several said that, reading or hearing about other peoples’ experiences was reassuring and helped them put their own situation into perspective.
Linda was having worrying side effects with tamoxifen. After talking to other women on the internet and her GP, she switched to Nolvadex.
Linda was having worrying side effects with tamoxifen. After talking to other women on the internet and her GP, she switched to Nolvadex.
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I started on a generic tamoxifen, and I will say I was very poorly, very poorly on it. Not everybody is poorly, I was very sick, it was almost like being pregnant. I was very sick, terrible stomach pains, absolutely feeling awful, just general feeling of not being well at all. This went on for three months. I didn’t know who to turn to, to speak about this, and so I went onto the breast care website and in writing to other ladies, they recommended, nobody officially recommended, to go and try Nolvadex, which is a purer form. Okay it’s 50 pence more, it’s 50 pence more than the generic one, but I pay for my prescriptions, so I felt if there was any problems that you know it shouldn’t really come into it.
So I went to see my GP, and I said would I be allowed to go on the Nolvadex as I heard it’s purer and better for you. Actually there was no qualms, no qualms at all. Yes, if I’m being poorly, then right away yes. I got better service from the GP than I did, and the aftercare, from the oncologist and the breast care nurse. So yes I was put on Nolvadex, and I would say within two weeks of taking this, I was a lot, lot better. And now I’m fine. I have had had problems with heartburn but I think possibly that’s because of the weight that you put on with the tamoxifen. But I’m absolutely fine now. I’ve been on it seven months now, and I’m so much better, absolutely so much better.
For some women, information on the internet was unhelpful because they found it negative or worrying. One woman who often used the internet said she had to ‘wean’ herself off it. Others said that information online was confusing or contradictory, sometimes because there was just too much there.
Carol found the breast cancer forums helpful but said that information on the internet could be confusing because everyone had different diagnoses.
Carol found the breast cancer forums helpful but said that information on the internet could be confusing because everyone had different diagnoses.
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Then, of course, you start researching, you start looking on the internet and you start going on the websites. And in a way it helps, especially the forums, because you read about other ladies and you can get into communication with people that are feeling the same things as you're feeling. But in another way it confuses you even more because DCIS is sometimes known as pre-cancerous, other websites will say it is cancer, it's early cancer. And the whole thing surrounding DCIS is very confusing. And that's one of the key things I picked up on when I was on the forums and reading other peoples' stories. And because you can't pinpoint exactly what you've got and everybody's different and the size and the spread and treatments and whether it's gone into the lymph nodes. And then you think, “Well, how can it go to the lymph nodes if it's in situ?” And then they tell you that it can hide other things. There could be a true cancer lurking there, that then could have spread and it's just like, it’s a lot of information to try and cope with really.
One woman said she wanted support rather than information and, like many others, to talk to other women who’d had DCIS. Many women said that they wanted to know more about the experiences of other women and those who did talk to other women in a similar situation often found it helpful and encouraging. One woman said she felt ‘desperate’ to talk to other women but didn’t know how to go about doing this. A few younger women said they would have liked to talk to other younger women with children. A 67-year-old woman said she would have liked to speak with someone of her own age. Most women found out about the experiences of other women or were put into contact with them through breast cancer charities, particularly Breast Cancer Care. Some women said that information and support through these women was extremely helpful and they wished they’d been told about this when they were diagnosed. Some women also said that joining a breast cancer support group was useful for information and support.
Hilary was happy with the care and information she got but would have liked to speak to other women in their sixties.
Hilary was happy with the care and information she got but would have liked to speak to other women in their sixties.
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I think it was [person’s name] the breast support, she gave me a card, Butterflies Support, which is the plastic surgeon, he started all this up. So because I’d got my computer I went up on the computer and I sat and read all that. Again reading other people’s experiences but still not saying to myself, “Well, you’re one of those now.” But that, and again that was a good support. And the first time I met [person’s name], who’s the co-ordinator of Butterflies, she was again wonderful. She’d had both hers [breasts] done and she says, “Would you like to look at my breasts?” And I said, “Well, yes. “ And she showed me and everything, like she’d actually had the reconstruction like myself. But she was younger and I’m thinking, “Yeah, but I’m 67” [laughs].
I think that’s what I missed. I would have liked to have been in touch with somebody of my age group. The nearest I got to was a lady of 57 who lived locally. And I did speak to her and she assured me about the hospital treatment and everything.
I would have liked to have found that more people of my age group, because at the very beginning that’s what, well you know, am I the oldest person that’s had this, you know? Is it necessary for me to have this? I felt it was because when the doctor said about it, I thought, well, everything they’d explained to me, I would have been silly not to have, to done that, you know. But, yes, I would have liked to have had somebody of my age group, say in their 60s, I suppose I’m really nearly 70 now aren’t I? But yeah.
And in terms of the care that you had in the hospital and before and afterwards, you’ve been happy with that?
Yes, I can’t say there’s, no I can’t honestly say there’s anybody, everybody’s been fine. And the cleanliness at the hospital I was in was excellent. Everything.
Yeah. And you’ve been happy with all the information that you were given?
Yes. Yeah.
Jacky wanted support more than information and to talk to other women in a similar situation. At the time she was diagnosed, there were very few breast cancer support groups.
Jacky wanted support more than information and to talk to other women in a similar situation. At the time she was diagnosed, there were very few breast cancer support groups.
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To be honest, I’ve never really wanted that much information. I know everyone’s different, I didn’t really want to know too much about the nitty-gritty of what’s going on. In hindsight, perhaps I wish I had because I haven’t got terribly, a terrible amount of information of the sort of cancer I’ve had. But I just thought, right, I can do my job and I know how to do it and I want you just to do yours. Just do what you think is right, tell me what I need to know but I don’t want to know too much. And that’s how I dealt with it at that time. And I put myself in the hands of the professionals and left them to it.
What I really needed was support and I needed to speak to somebody who’d been through what I was going through. And, eventually, I managed to find a little bit of that but not as much as I would have wished. But since I’ve become well I have found out there is a lot of that sort of support around and I, in fact, belong to an organisation which is Breast Cancer Care and I do give a lot of that support to other ladies. And I would, just wish I’d had that nine years ago when I was going through my stuff.
A few women found talking to other women with DCIS unhelpful because the women they spoke with were several years on from treatment and this was too far down the line for them, or they were not well matched in other ways.
Agnes was grateful to talk to another woman with DCIS but preferred to get information from other women by using internet forums.
Agnes was grateful to talk to another woman with DCIS but preferred to get information from other women by using internet forums.
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I also got in touch with Breast Cancer Care who put me in touch with somebody. They’ve got a branch called Peer support group, where people who had, been through it all in some way or another, any kind of breast cancer, are volunteering to talk to you, to share their experiences and talk it over.
So I had a phone call now twice with a lady called [name]. She sounds like my age, probably a bit older than me, with three children, who are at university. Two of them are at university now. And she had her first operation five years ago. She lives somewhere in [city]. And she’s lovely to talk to. But because she’s talking already about two operations, I’m not sure I want to get in touch with her anymore because I don't want to be in the same boat. And also because English is not my first language and she’s got such a hefty Scottish accent, sometimes I do find it hard to understand what she’s saying. And I don’t want to sound ungrateful but it’s not really helping me much. So at the moment, I’m getting advice from the Internet and the forums. But I try not to overdo it because it could be very depressing at times.
Ann wanted to talk to other women who were at the same stage as her and trying to make decisions about treatment.
Ann wanted to talk to other women who were at the same stage as her and trying to make decisions about treatment.
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The other thing I haven’t mentioned but I was desperate to meet other women, I really was. And I didn’t have that opportunity. To be fair, the hospital here, a woman did ring me up, they did get in touch with someone who’d had an LD flap who, you know, some years, well I don’t know, four or five years before. She was very upbeat and everything and it was quite nice to talk to her at the time but I think, because I was in a slightly different frame of mind, she wasn’t the sort of woman I felt at that time I needed. She was too far down the line probably and too gung-ho about, “Oh it would be fine, shall I come with you? You know, everyone’s lovely there.” And I was coping with all, I don’t think everyone’s lovely there. You know, all this sort of stuff. And after that I’ve failed to meet anyone through the hospital.
I went to the local breast care group a couple, I’ve been two or three times. Again it’s a social group really and I wanted to talk to people who actually were sort of in the process of making some of the decisions I had to make. That’s why I used to ring up Breast Cancer Care. I had a couple of conversations with the people there about when, you know, again I did speak to a woman about her LD flap. Again she was very positive about it and so that was fine.
But I believe even the local hospital now, things have moved on a little bit. They’ve got a group going for people who are newly, or would feel the need to meet other people. Though I think at the time I was, you do, well I did anyway, got a little bit selfish, I only wanted to talk about me in a sense, I really only wanted to talk, to identify with someone who had something very similar. You know, I didn’t want to talk about people who might be having chemotherapy. I just wanted, and that’s the sort of selfish thing you develop at the time. I just couldn’t cope with anyone else’s …But I did really want to talk to people, I know I did. And I found that, you know, I think I found that for quite a long time after, not just the DCIS, but the other stuff.
So, I suppose I ought to say, when I went for my second opinion with, he has a different, he actually introduced me to some of his ladies as he calls them. And I found that very helpful. So, you know, if I go and have this nerve operation I’ll have, what I said to him was I haven’t actually met anyone who is happy in the sense that, so he said, “Well I’m here in the clinic today and I’ll.” and he found two ladies who actually could talk, they showed me what theirs was like. And mine does move rather more than theirs. So, in a way, he was sort of saying, well, yeah, yeah. So that all took a bit of time and I think, I don’t know, as I say, we’re going back.
Some women said that they kept all the information they had collected in one place for future reference, and recommended this to others.
Last reviewed July 2017.
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