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.

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.

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 foranti-hormonal tablet treatment, the best of which or the most well known of which is tamoxifen, is usually when you’

Some women felt confused when they, for example, looked on the internet and read about other women’s experiences and some of those women have had lymph nodes removed and others haven’t.

Yes. If we go back to our understanding of DCIS not having the ability to go to other parts, then if it doesn’t have the ability to go to other parts, it shouldn’t go to the lymph nodes. But at the time that the piece of the breast is being removed, we won’t know for certain that all of that change in the breast is DCIS. There might be areas of it that have gone a small step further, still early breast cancer but now are invasive, and in order to cover that, you might think we need to check if there are areas of invasion, could they also have spread to the lymph glands?

Now in practical terms, again what tends to happen is if you’re having a piece of the breast removed for DCIS, you won’t have any operation on your lymph glands, except in exceptional circumstances. If you’re having the whole breast removed, therefore there’s a wide area of DCIS in the breast, then it’s sometimes very convenient to take three or four lymph glands at the same time.

So at the same time as doing a mastectomy, because there is a wide area of DCIS, it’s very technically convenient to take three or four lymph glands from the armpit, because they are there at the edge of your operation, and the reason you’re doing it is that when the full wide area of DCIS has been examined by the pathologist under the microscope, they may say, Most of it was DCIS, but there were a few smaller areas of invasion And if someone’s got some invasive breast cancer, usually the lymph nodes will be checked and, to avoid bringing the patient back for a second operation to check their lymph nodes, those four or five nodes will be taken at the same time as the mastectomy. But there’s really very little morbidity from that. People don’t get swelling of their arm, so called lymphoedema in the future, when they only have four or five nodes removed. It costs the patient very little extra.

And some women wondered, having read about other women’s experiences on the internet often, or having spoken to other women, why some women seem to have quite a few lymph glands removed, and others have had less.

There should be no aim of the operation to take more than perhaps what’s called the sentinel node, the first one or two nodes involved in the axilla, or four lymph glands which is called an axillary sample. Now sometimes when you take a lymph gland it may not be just one lymph gland, it might be five tiny lymph glands stuck together. So when the pathologist examines them, when you thought you took four, it ends up that the count is eight or nine, and that is just something that occurs due to the fact that that one lymph gland was a coalescence or a coalition of small ones. But surgeons don’t set out to do any more than about four lymph glands for patients with DCIS because what they’re trying to do is save the patient a second operation. But most certainly you shouldn’t be doing excessive surgery.

Yes. And some of the women that we interviewed said they had some lymph nodes removed before surgery or afterwards, so in which cases are they removed before or afterwards?

If we go back again to the previous situation when you would remove any, for somebody whos having a piece of the breast removed, generally they won’t have any axillary operation till that piece has been examined. And if it only shows DCIS, then they won’t have any axillary or armpit operation.

Some women also wanted to know why some women with DCIS have radiotherapy and others don’t.

Good question. And the basis of treatment with DCIS is to try and achieve complete excision, complete removal by surgery. Now the use of extra treatments such as radiotherapy or other anti hormonal tablet treatment has varied greatly amongst various clinicians, because it’s a little bit uncertain where the role of those other treatments lies. And it also is to do with the fact that not all of the DCIS will be the same. And to expand on that a little bit more, if you had a mastectomy, removal of all the breast and the nipple for DCIS, it would be really, really unusual that any radiotherapy would be needed afterwards.

But if you’re having just a piece removed of the breast for a normal invasive breast cancer, you would always have radiotherapy to the rest of the breast afterwards. With DCIS, what it can do is to try and recur in the same breast, often in the same area, and studies have said if you had radiotherapy it makes it a bit less likely to come back in that breast than if you didn’t have radiotherapy. All that’s going to happen is the DCIS or a form of cancer might come back in that breast and you reduce the chance with radiotherapy. But there’s divided opinion about whether the radiotherapy is giving you real benefit or not. Because for most people, if it has been fully removed, then it won’t recur. So there is ongoing debate and the role of radiotherapy has probably become a bit more clarified in recent years, and I would think now it is more common for the, if you like, the more difficult types of DCIS, the higher grade, most people would now get radiotherapy. For those that are not higher grade, they probably, most would still not get radiotherapy.

Are there any situations in which women with DCIS would have chemotherapy?

No. No. That’s the easiest question of all Suman. Because chemotherapy is very much to deal with cancer cells that have gone from an invasive cancer in the breast to some other part of the body, you wouldn’t know where they are, but people have chemotherapy in order to treat them because the chemotherapy drugs go in the blood stream to all the parts. But the DCIS doesn’t have the risk of cells going to other parts. Chemotherapy as such would be a huge overtreatment to try and prevent DCIS coming back in the same breast. And doesn’t have a role.

A lot of womenwanted 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.

Yes. And a lot of woman said before having surgery, often it was the very first time that they’d had surgery and they were worried about having a general anaesthetic for various reasons. Is there anything that you could say to reassure women who are worried the day before surgery, or leading up to surgery, about anaesthetic?

Well general anaesthetic where patients go to sleep to have their surgery is extremely safe. And it’s extremely safe particularly in this patient group who are having what is called elective surgery. They’ve got a problem and it’s planned that they’re having an operation for it. And therefore they’re usually assessed beforehand to know that they’re in medically good condition to have their surgery. And the number of times that a patient has problems with general anaesthetic that is severe in that kind of situation are extremely small. I think statisticians have worked out that the risk, that the drive to the hospital often may be greater than the general anaesthetic that you’re having.

So the anaesthetic sometimes can be different for patients who have come in as an emergency, after a road traffic accident or when they’re ill for other reasons, which is very different from the lady coming in to have a breast operation. So we wouldn’t see, year on year, any instant of a severe problem after a general anaesthetic for a breast patient.

Yes. Can there be smaller kind of reactions, like some of the women said they woke up shaking or shivering a bit, or vomiting.

Yes, I think that those types of things can happen. A lot of ladies often had experience in the past of having had an operation for some other reason, and the anxiety as well before the operation sometimes means they’re a bit nauseated afterwards, cos all of us as humans are complex individuals, so rather than it just being the drugs, it can be the mental state or the emotional state which affects everything. But, by and large, most patients tend to find things very straightforward and as a reflection of, like more and more these days people go home the same day.

After a wide local excision?

Yes. Yes, and occasionally in some parts after a mastectomy with drains in perhaps. But they recover very quickly. they’re usually able to meet their loved ones later on that day and they’re feeling relieved that everything’s alright.

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 foranti-hormonal tablet treatment, the best of which or the most well known of which is tamoxifen, is usually when you’

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

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 foranti-hormonal tablet treatment, the best of which or the most well known of which is tamoxifen, is usually when you’

And when do doctors usually know the grade of DCIS?

They’ll have a suggestion from the small pieces done by the biopsy, when the patient is first diagnosed. And you’ll have an impression that it’s DCIS because on the mammogram, which is now how most are diagnosed, there’ll be the absence of any mas as the jargon calls it. In other words, the equivalent of a lump, there will just be change in the mammogram without any mass’ or lump on the mammogram. And with that type of change the expert radiologist will often say, It looks as if there could be cancer change in the breast, and if there is, it’s likely to be DCIS They’ll then proceed to do a biopsy taking small pieces for the x-ray department, and when they’re looked at under the microscope, the pathologist would be able to say, Yes there is cancer change, and yes it does look like DCIS, and the type of DCIS that I see looks high grade So you’d have a good idea at that stage, but we wouldn’t know for certain until the piece has been fully removed and then analysed under the microscope.

And women also asked about the different grades of DCIS. And whether low grade over time progresses to high grade? Could you talk a bit about that?

Yes. There’s two aspects to that I suppose and again they are very sensible and valid questions. The first is, we don’t know exactly what it is that is in the breast until the pathologist has fully examined all of that change. And the only way the pathologist can examine it is if it is removed. Everything else is a best estimate, based on the x-ray, and based on the biopsy. But you don’t know for certain what the cancer change in that breast is, if it’s all DCIS or if there’s little areas of invasion, or if the DCIS is high or intermediate or low grade, till it’s all been fully examined. So we are very dependent on the situation where you have it removed to have the best category put on it.

Now the natural history of DCIS will vary from person to person. Some will go on and develop a proper or invasive cancer as it’s called in that area of DCIS. But others won’t, and we’ll never know at what stage of evolution the patient has come. They may have had it for 15 years or 10 years or 3 years or 6 months. And therefore we don’t know where they are on that road and the rate of change in it with invasive cancer you cannot say from one individual.

You do know with high-grade DCIS that there is an increased chance of a breast cancer being present there at the start, in small areas the invasive we spoke about earlier, or it developing in the future. Or even the DCIS coming back or recurring in that breast in the future.

With the low grade it’s probably much slower, more indolent, and whether it’ll really ever cause harm to that patient longer term, or shorten their life, is very doubtful. The difficulty is knowing that all they have is low grade because, as we said, you don’t know that for certain until the thing has been removed.