What is DCIS and what’s all the uncertainty around it because women often find it quite a difficult thing to understand?

I think it probably sounds more difficult with the technical language that is used because the use of words, for example Latin terms that are not in everyday use, so therefore it’s not surprising that people think that there must be a great deal to it, and it’s very intimidating.

I think if we initially consider how the breast is made, then it gives us a better chance to understand what DCIS itself is about.

The way the breast is structured, there are areas within the breast where the milk is made, and then small tubes, milk ducts as such, that drain from those areas towards the nipple. So that the milk produced can go towards the nipple. Those tubes are milk ducts, they will have cells that line them so they will be called ductal cells, and the vast majority of breast cancers occur in those ductal cells. Those ductal cells lose the normal constraints that they have as regards their behaviour and their growth and they get out of control and therefore are cancerous. And what ductal carcinoma means is a cancer of those ducts and the in situ bit means in one place.

So the cancer change in those cells lining the ducts has occurred but it hasn’t broken through the lining just outside of that layer of cells. And the significance of that is that those cells can’t migrate to any other part of the body, so that’s the big issue with DCIS, it’s a local phenomenon. It is a form of cancer, although some ladies prefer to look at it as pre-cancer, thinking that cancer as such is where cells migrate to other parts.

And I suppose one of the words as well that sometimes causes distress is invasive.And often cancers as such are described as invasive cancers. If one was being technically correct, in common everyday usage we tend to drop the word invasive because it does seem to express something much more aggressive, whereas it’s only saying, well this is a cancer. Ductal Carcinoma in situ is not invasive. It hasn’t reached a stage where the cells have broken through the lining that contains them, and therefore it hasn’t got the ability, even if it wanted to, to go into other parts. So that is really the essence of DCIS.

Right, that’s very clearly explained. Some women feel confused by all the different terms such as pre-cancerous, pre-invasive, non-invasive,

Yes. It is unfortunately a continuing situation where many different terms are used to try and explain something. And all of them are very similar. Patients often struggle even with benign and malignant, thinking that benign is some form of cancer as well but may be less aggressive.

In the simplest way, I think it’s easier to divide lumps, which would be a common thing, into being benign or malignant, and malignant and cancer would mean the same thing, and benign would mean everything that isn’t a cancer. So those two broad categories.

Again I must stress that patients shouldn’t be put off by the jargon. The DCIS is, they’re entering a whole new world of medical jargon and therefore stand back a little and understand it as a form of breast cancer where the survival in the future is excellent. And that some of them would have developed proper breast cancer, but quite some time in the future often, so there’s no need to feel that there is an urgency, or that they need to rush into something. They can take their time and understand things, and understand their tre

DCIS was something I’d never heard of before. Different friends had had different sorts of breast cancers but never this DCIS. And what he [doctor] explained was that some of the biopsies they’d taken showed that they were cancerous. But the others were benign.

I took my husband with me that day because I knew I could get not the result I wanted. And I needed somebody with me. When the doctor told me that yes it was, the cancer was in the milk ducts, it was contained and non malignant, he said it was the best sort of cancer to get. It did make me think ok. But at the end of the day I just said to him, Ok that’s fine Which is it wasn’t really fine. But that’s just what you’re just in shock when they tell you that you have something like that.

But I had a wonderful breast care nurse there who I then went talk to afterwards. And she explained everything about DCIS. DCIS was something that obviously I’d never heard of before. And she gave me lots of literature. She told me go onto the breast cancer website.

My mum had breast cancer when she was eighty-three. She’s now ninety-two this year. So hers was diagnosed initially as DCIS. And to cut a very long story short, when they took a biopsy, when they sent all that material off, they found that it had actually broken through into her breast. So therefore it was breast cancer, two very tiny areas of breast cancer.

So she had a lumpectomy. But she hadn’t actually got a lump. She had the lumpectomy, had a small area taken away. That’s the tissue that they looked at and that’s when they discovered that it had actually gone that bit further. So because of her age and because she didn’t want to be having radiotherapy, chemotherapy, whatever, they told her, she opted to have a mastectomy because of her age. And that was done and she didn’t have to have any follow-up tablets or any chemo or radiotherapy. None of that. So I actually looked into DCIS quite a bit for my mum because at that point in time I had nothing wrong with me.

How old were you at that time, if you don’t mind me asking?

Oh I can’t remember my age now but mum was, if you can do the maths, my mum was eighty-three. She’s now, well ninety-one. She’ll be ninety-two this year. And I’m fifty-six this year. So I’ll leave you to do the maths on that because I’m hopeless [laughs].

But obviously I was concerned and wanted to learn more about DCIS for my mum’s sake. Because we were hoping she wouldn’t lose the breast and also I did ask the nurses at the time, should I be concerned and my sister, I’ve got an older sister. I was told that there no greater chance of me getting it or my sister getting it than any other woman getting so we shouldn’t be concerned about that, because my mum had got it later on in life. Had she got it before she was 50 then, you know, we might have been looking at a family link. So that was what was said. These were doctors and nurses in [place name] because that’s where I’m from originally, that’s where my mum still lives. So this was all done at the hospital in [hospital name].

So I already knew a fair bit about DCIS because I asked my mother’s doctors and nurses, I read the posters, I picked up leaflets and, you know, I looked into it, as I say, from my sister’s and my point of view. So that all happened for my mum.

I’ve tried to think back. I’ve said, Am I really kidding myself that there was nothing that I suspected about how my breast was And I suppose I have to, you know, again maybe I’m trying to convince myself but if I’m totally honest I had been going to the doctor about, what, a sort of tightness across my And I always said, Oh, I’ve got the you know, family would say, You’ve got an awful cough mum. You know, why don’t you go and sort it out And I had been a couple of times and in the end she’d sent me for an x-ray to look at my chest. They found nothing. Given me an asthma test, they could find nothing. But there was always this feeling of tightness across there.

And also I think, well as I said, my father was ill but I’d lost my mother in 2003. And that was quite difficult as well because, as I say, they were miles away. But my sister and I shared it between us. But I do remember when she was ill getting some slight panic attacks and feeling that there was something pressing on my, deep down inside me. But I didn’t used to worry about it. I thought, Oh it’s, I don’t know, indigestion or something like that, you know And it used to come and go and, as I say, I suppose my life at the time was so, I had so many things to think about that I think, and I thought I was getting older, maybe this was just old age, you know, something that explains But I suppose, looking back, maybe there was something there. But I genuinely had never ever thought it was anything to do with my breasts. And, as I say, I had been to the doctor a couple of times and we’d never sort of gone down that thing at all.

So, you know, I had no lumps as such. But it did seem to be getting a little bit heavy, my boob. So maybe there was something there. But that’s in retro, you know, looking back on it. And, as I say, I’ve spoken to so many of my friends and they’ve never heard of DCIS. You know, if you read anything it’s all about lumps and bumps and things like that.

But it still feels very, it still feels very dramatic to me, that you go in with, not even, maybe you have, maybe I did have something but I certainly hadn’t acknowledged it. And I don’t think it was because I was consciously pushing it to the back, how you might do if you found a lump maybe. I really, that was quite genuine. So the whole thing, you know, I found it quite tough I suppose.