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Let’s be Upfront about ductal carcinoma in situ, or DCIS.
Non-life-threatening and often referred to as "stage 0 breast cancer", the experience and treatment of DCIS can be significant and frightening, so it’s important to understand the facts.
There is a lot of confusion about what DCIS is, its inconsistent terminology and why treatment options can be so significant if it’s not actually considered invasive breast cancer.
In this episode, we’re joined by Ellis Zonderhuis, who was diagnosed with DCIS in 2019, as well as Dr Jocelyn Lippey, who specialises in oncoplastic breast surgery.
This episode covers:
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Kellie Curtain [00:00:04] Let's be upfront about ductal carcinoma in situ. Also known as DCIS, it's often referred to as 'stage 0 ' breast cancer. It's non-invasive, which means it hasn't spread out of the milk duct. DCIS can still be frightening so it's important to understand the facts. In this episode, we welcome Dr. Jocelyn Lippey, who specialises in oncoplastic breast surgery. Also joining us today is Ellis Zonderhuis. Ellis was diagnosed with DCIS in 2019. Welcome to you both. So, Jocelyn, what actually is DCIS and how is it different to invasive breast cancer?
Jocelyn Lippey [00:00:46] Sure. So DCIS stands for ductal carcinoma in situ and it's quite a complex or confusing entity because it's not actually breast cancer. It's when there's abnormal cells within the breast that are a precursor to cancer that are likely to turn into cancer. But it's definitely not cancer while it's at that stage. And I feel very strongly that we should not be talking about it as cancer. And the confusion about that is that the word cancer is in its name. It's different to cancer in that it doesn't pose a threat to your life while it's in that pre-malignant or pre-cancerous stage because it can't spread outside the breast to other parts of the body that then would pose a threat to your life. And that means that there's no urgency to treatment or not the same urgency that there would be if there's a breast cancer.
Kellie Curtain [00:01:33] So it never moves past the milk duct?
Jocelyn Lippey [00:01:37] While it's still ductal carcinoma in situ, it can't get outside of the breast.
Kellie Curtain [00:01:42] Okay. So why is there the debate?
Jocelyn Lippey [00:01:47] It just has to do with the nomenclature or the way that we classify breast cancers. But it also has to do with the way that the cells look under the microscope because they look like cancer cells and they are cancer cells. It's just that they haven't moved beyond that cell layer, that means they've got the ability to spread to other parts. That cell layer is called a basement membrane. And it's just about the classification of cancers, that there's always a classification where you can see cancer cells that haven't gone beyond that cell layer.
Kellie Curtain [00:02:17] The difference with DCIS is that you don't find a lump do you?
Jocelyn Lippey [00:02:20] Yeah, that's right. So 90 percent of women won't have a lump when they find out about DCIS and they won't have any symptoms at all. So that's the vast majority of women who were told they have DCIS have no lump at all and they just find out about DCIS because they've had a routine mammogram usually through the breast screening program or sometimes through their GP or another type of surveillance program.
Kellie Curtain [00:02:45] Ellis, you were diagnosed at forty six. Did it come as a shock to you?
Ellis Zonderhuis [00:02:50] Yes, absolutely. Yes. I do not have any history in the family. I did not expect anything to be wrong. I literally just went for it in my mid-40s. Why do I not have a complete health check? I do the pap smear. I should go for a mammogram. So I signed up for the BreastScreen Victoria in the Rose Clinics are just on a lunch break in the David Jones shoe department with absolutely no expectation of something being wrong. So when maybe about 10 days later, I received an email as a call-back I was very surprised and very anxious to know why that was. At that stage it is just an email. And although I did reach out because there is a telephone number to ask questions, of course, there is nobody there can give any information on that. So it's a matter of waiting then for that call-back. And I think where I've been thinking about doing the podcast, of course, and where my most anxious moments within my journey have been was going back into the BreastScreen again on a normal workday; now not bringing any support, not taking my husband, not taking a friend and just thinking I'll just whizz over for another mammogram. And from the mammogram, we went into an ultrasound. And as the first doctor was doing that and calling for the next doctor, the anxiety starts building. Thinking, okay something here is not right and I don't have any idea what that would be because I don't have any experience. But obviously you think of the worst and then going straight into the biopsy. I've never experienced anything like that. We've discussed, Jocelyn and I, about the torture bench. It's a horrible tool which obviously is necessary. I totally understand. But that was one of the moments, very low moments for me, very lonely and vulnerable. Even though the team was amazing, everyone was wonderful. But is that the 20 minutes that they're actually doing the procedure to you when you're lying there in it's like a sort of a movie thing that comes through, you think oh, "what if?".
Kellie Curtain [00:05:02] You say so, you've gone from no sign at all, no indication to all of a sudden you're having surgery?
Ellis Zonderhuis [00:05:09] Well, at that point, you know nothing. And then another week later, you get called in for the results. And that's when I brought a friend, which was really good. I've got a husband who's a teacher, so he always struggles to get time off. So I've got a beautiful friend. And that's when I met Jocelyn, because you basically get paired with a surgeon through BreastScreen Victoria. I think the moment where they came in collected me with three people was the sign where I thought, this is not just one nurse. These are too many people.
Kellie Curtain [00:05:40] Overwhelming?
Ellis Zonderhuis [00:05:41] Totally. Totally. I do think, though, when we got to that stage and you get the results and the fact that I stayed with Jocelyn was obviously through her way of communication with me at that time, that the experience of that torture bench the biopsy, to OK we've got a problem. And what are we gonna do about it, I actually left less stressed than when I left on the biopsy. I had a plan. And that's right. And I had I was very clearly told as we were just discussing it. It's a pre-cancerous form. It is not affecting my my life. It's not a threat to my life. So we were gonna do surgery and there's images, so it was really good for me to take that home and also then explain it to my husband and my family to say if this is what we're looking at. Communication, very important.
Kellie Curtain [00:06:41] And what questions should someone be asking their doctor about DCIS?
Jocelyn Lippey [00:06:50] So you want to ask your doctor what grade your DCIS is, because that impacts the rate or the speed that it potentially can change into a cancer. So if you have high grade DCIS or low grade DCIS, it's really important to know because that impacts the sense of urgency as well. You want to know how much of the breast it affects because that impacts what type of treatment you're going to need. It would be good to ask, would any other tests be helpful? So at that stage when you're diagnosed, usually you've just had a mammogram and an ultrasound and sometimes an MRI can be helpful, but not for everybody, but it's worth asking the question. It would be good to know what the risk of there being a cancer in there is. So if you have an area of the breast that's a large area of the breast that has DCIS so more than 5 centimetres, your chance of having a cancer hidden in there is higher. So that would be a good thing to know because it impacts what other treatment would be recommended. If you're going to have surgery, what type of surgery they recommend, and if you are going to have a mastectomy, it's important to have the conversation about what the reconstruction options are.
Kellie Curtain [00:07:54] So it's quite ironic that with DCIS being pre-cancerous and the lowest grade, if you like, that it can also mean a mastectomy?
Jocelyn Lippey [00:08:07] Yeah. That's right. And that's the paradox about it. And I think that's part of why it's so difficult to come to terms with about, you know, why I needed this radical operation for a disease that never would have killed me. And I think that is something that women find really hard to get your head around.
Kellie Curtain [00:08:25] How common is it for women to need a mastectomy?
Jocelyn Lippey [00:08:30] We don't have great data about Australia because it's not collected. But our local audit from Perth was 46 percent of our women needed mastectomies for DCIS.
Kellie Curtain [00:08:39] It is huge, it's massive.
Ellis Zonderhuis [00:08:42] Yes, and luckily, you don't know it from the first day. I think it's really good. Through my experience to take it in bites where you're at. Do that first step. I mean, I don't know. You can answer that, if there's anyone in such a high grade that you have to go through a mastectomy straightaway.
Jocelyn Lippey [00:09:03] Yeah, there are there are women. And in fact, Ellis even for you, a lot of surgeons would have looked at your initial imaging and said, no, this needs a mastectomy. But because I was keen to try and you were keen to take that risk we could do some oncoplastic surgery and remove a larger area or a larger volume of the breast and do some rearrangement that a lot of surgeons, some surgeons won't do. But certainly there's a lot of women who come to diagnosis knowing that they're going to need a mastectomy upfront. And that has to do with the amount of breast that's affected compared to the volume or the size of your breast initially.
Kellie Curtain [00:09:42] Jocelyn can you just clarify oncoplastic surgery?
Jocelyn Lippey [00:09:46] So oncoplastic surgery is a relatively new term and it refers to the sort of marrying of off like oncology breast surgery, as well as some plastic surgery techniques. And the plastic surgery techniques that we've adopted from our plastic and reconstructive colleagues is about internal breast rearrangement. So the most common form is a breast reduction or a mammaplasty. And what we can do with oncoplastic is a variety of different mammaplasties that move the breast around in huge number of ways, that can be tailored from person to person that can allow much larger areas of the breast to be removed with still a good cosmetic outcome.
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Kellie Curtain [00:10:45] And Ellis you did end up needing a mastectomy? So you had one surgery as a lumpectomy? And then Jocelyn, was it because they weren't clear enough margins? Explain how perhaps you can't see with the naked eye how large DCIS is.
Jocelyn Lippey [00:11:09] So, most DCIS is impalpable or means you can't feel it. So when we operating, we don't really know which part of the breast it affects. So you need some guidance to which part of the breast to remove. So Ellis initially had some wires is the most commonly used technique to find out which area of the breast to remove, but there's some other techniques we use as well. And then when you remove that specimen, you do an X-ray and make sure you've got all the calcium that you saw on the original mammogram. But sometimes the DCIS isn't forming calcium and it can't it doesn't look or feel abnormal. So you think that it's clear and then the pathologist looks at that under the microscope and says in Ellis's case says there's still DCIS at that margin. So more breast needs to be removed.
Kellie Curtain [00:11:50] And that's when you made the decision to have the mastectomy?
Ellis Zonderhuis [00:11:53] Well, I think it's important to say that Jocelyn and her team had looked at my case, and whereas some surgeons would have said, let's go to that dramatic stage straight away. We together decided to see if we can go back into an excision and see if we can take more of the tissue out to then get that clear margin? So we did that. So 10 days after I think about 10 days or 14 days after went back in for day surgery to take more tissue again, go back home, think about it. Happy with the results, no pain. It really has to be said. I bounced back extremely quickly after those lumpectomies in those day surgeries. But then again, I got bad news. It was, again, not clear enough. And that's when it's not my decision. It's not an option to not do it. Because I think in my case, we talked about my DCIS had a 30 percent chance of growing into breast cancer. That is not a number you are comfortable with. So then that's it then.
Jocelyn Lippey [00:13:00] Yes. And it's a really personal decision because everybody feels differently about their body and and what options are made. And some women would have been faced with your choice early on and said, no, I don't want to take that chance. I'll just go straight for a mastectomy. And it's say nice, but nothing's nice about it. DCIS is you've got the time to be making those decisions and you don't have to make those decisions fast.
Kellie Curtain [00:13:27] Because there's no urgency? Is that the...not the upside. No.
Ellis Zonderhuis [00:13:32] Well, it is! It is the upside that there's no urgency. You know, I can still sleep at night. I actually went on that holiday before the first lumpectomy. I actually really enjoyed it because I knew there was no urgency. So I do think that that's a very important part of it. At the same time, as much as I was given the option of waiting for three months, that was would it be too much of a stretch. You get all these scenarios of maybes. Once we did the holiday, we sort of went from one to the next. As long as your body can have enough time to recover. Yeah. And that was a good thing.
Jocelyn Lippey [00:14:09] And it's probably a good time to clarify the urgency as well. So, you know, I say that there's no urgency. But just like that, I wouldn't have been comfortable with three months either. Yeah. You know, a couple of weeks or a month, I think is safe.
Kellie Curtain [00:14:23] So apart from surgery, what are the common forms of treatment with DCIS?
Jocelyn Lippey [00:14:29] So if you've had most of the breast kept, we would usually recommend radiotherapy with that as well, but not for everybody. And that's to reduce the chance of the DCIS or cancer coming back in that breast. If you've had a lumpectomy or wide local excision, the chance of it coming back without radiotherapy is about 20 percent. And that risk is highest in the first 10 years and then settles down a little bit after that. But if you have radiotherapy, that risk comes down to 10 percent. We never offer chemotherapy for pure DCIS because chemotherapy's job is to mop up any cancer cells that are left spreading throughout your body. But that can't be the case if there's no cancer at all. And the other treatment we sometimes talk about is hormone tablets, the same hormone tablets we talk about for breast cancer, and that can reduce the chance of more DCIS. But depends on the type of DCIS you have, if it's using oestrogen and progesterone to grow. It tends to be very cultural. For example, in America, they use a lot more of it than we do here. We tend not to recommend it all that much in Australia.
Kellie Curtain Is there ever a scenario where it's safe to avoid treatment?
Jocelyn Lippey So this is a really contentious issue and a huge area of research as locally and internationally. So there's been some international trials opened up to see whether it's safe to avoid surgery in women who've got what's called a low risk DCIS. So that's women who've got it's almost always low intermediate grade. So slower growing DCIS and normally older women, more mature women. And in these trials, you can be randomised or placed into one or two groups where you're either having what's called active surveillance, where you've got routine and regular monitoring versus conventional treatments or surgery, plus or minus radiotherapy. And they've got good names. So the UK trial is Loris and the American trial is Comet and the English and the European trial is called Lord. We were in some discussion about trying to get it up and running in Australia, in New Zealand, but we probably don't have the numbers locally of patients who'd fit into that category. But really it would only be that very low risk person. And that actually makes up us a very small minority of women diagnosed.
Kellie Curtain [00:16:59] Is there a certain age group that is more likely to get DCIS?
Jocelyn Lippey [00:17:04] It's the same age group demographic as for breast cancer. So typically as we mature, you become higher risk. So Ellis, for example, would otherwise be at like a low risk. And that's the interesting thing about risk, is that low risk is not no risk.
Ellis Zonderhuis [00:17:20] Again, I'm sorry I didn't get more question because I know obviously now go and tell all my friends to get their boobs checked. If I would have waited if I did not have gone in when I did and I was waiting for my turn 50 and I get a call from the BreastScreen, is it is it fair to say that my situation would have been a lot worse or potentially?
Jocelyn Lippey [00:17:45] Yeah, potentially. And it's hard to predict. And that's part of the problem with DCIS is that we know that not all DCIS goes on to be cancer. Most cancer starts as DCIS, and we just don't have the information to know whose will and whose won't. So it's estimated about 8 percent of women die with DCIS in their breasts. So yeah, without knowing and without it progressing.
Kellie Curtain [00:18:10] So it not being the cause of death?
Jocelyn Lippey [00:18:13] Exactly.
Ellis Zonderhuis [00:18:13] But it also means that not all breast cancers have started as DCIS, that's also really important.
Jocelyn Lippey [00:18:17] That's right. But the worry is that you don't know. And you can't predict that.
Ellis Zonderhuis [00:18:25] Is therefore, is 50 the right age to start screening?
Jocelyn Lippey [00:18:29] Fifty is the age that we recommend through BreastScreen, because it's this balance between when your risk is the highest and mammograms are a better test; so mammograms for very young women, sort of 20s and 30 year old. It's not a great test because your breast density still very high, whereas you mature, your breast density goes down and you see more on a mammogram, but also your risk increases.
Kellie Curtain [00:18:54] And of course, if you've got a history of breast cancer, then you have a screening earlier. And if you ever have any real concerns, you always go to your GP and be reassured by that rather than then worry about it. So what's the follow up care for someone with DCIS?
Jocelyn Lippey [00:19:13] So once you're diagnosed with DCIS you come out of the breast screening program and you have regular tests. If you still have breasts remaining, you'd still need a mammogram and an ultrasound or possibly an MRI. And that would usually be recommended for every year. And you'd see a surgeon once a year or sometimes more frequently for follow up.
Kellie Curtain [00:19:32] So what's the chance of recurrence?
Jocelyn Lippey [00:19:34] In a remaining breast that's had treatment for DCIS that risk is 20 per cent over 10 years if you have not had radiotherapy or 10 per cent over 10 years, if you have had radiotherapy. But for your other breast or if you've had a mastectomy, the risks are different. So for the other breast, if you've had one mastectomy, the risk to the other breast is 0.5 per cent per year. And typically it's found earlier because you're having tests done more often.
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Kellie Curtain [00:20:30] Ellis, what has the recovery from your treatment been like?
Ellis Zonderhuis [00:20:33] So I've had various stages, of course. And so I really felt that the first lumpectomy, two nights stay in hospital, I was tempted to feel that I was more exhausted from the city and just from the experience of hospital being away from home, but not in a pain level. I have not experienced a lot of pain. A lot of Panadol regularly was absolutely fine. I had some tingling in my arm after the lymph node was taken out from under the armpit. That's something that the armpits still is quite numb, but it actually doesn't bother me. You just can't feel it when I shave it. The main recovery and I still feel there today, m big mistake to me, surgery. So this is something I feel very passionate about explaining as well. I was fortunate to go in with my breast and come out with a new breast. So it looks and feels amazing. And I think that's really important. And I was lucky enough to be my mid 40s and have a little bit of speck around my waist and that could actually be used as a donor, but it doesn't mean that I woke up being in quite a state of shock to see that the surgery. That scars and that was huge. And only later on, I realised that I had been sort of bent over 15 centimetres so I had really serious back pains had been really struggling with my back, if anything else, because for six weeks, two months, I was never up straight again. And so it took me a long time to just get back into doing my normal things, to have my own shower. I did not consider that. And I don't think you can consider that until I woke up after my whole surgery took about eight hours. So it's a huge day for all surgeons involved. And I'm extremely happy with everybody who did it. But I did not see that the extent of that recovery coming because I never had anything. I had never had surgery and never even had stitches. So little things like my skin was agitated by surgery, material like the stitches. So it's sort of like really like everything else, it sort of gets infected and you need antibiotics. So that was just a layer on top of what was already there. And I think that was that's definitely a harder journey to recover from than the breast itself.
Jocelyn Lippey [00:23:19] It is major surgery. And it's hard to arm you with that expectation about recovery because there's so much other information to digest.
Ellis Zonderhuis [00:23:28] And I think you also don't as much as you you know, they say, look, if you if you use your own donor tissue, it will take you about six weeks. You think that's a long time, six weeks. And then you sit at home and within six weeks is a really long time to have limited mobility.
Kellie Curtain [00:23:46] What about mentally? How have you recovered mentally?
Ellis Zonderhuis [00:23:51] It's a good thing. It's weird because I went in feeling fine. I wasn't sick. I didn't have any problems. And I now look at myself after shower and like, woah, that's been quite a bit of stuff happening. But I still feel lucky because I do. I do understand what could have been. And I don't have to worry. So I. As much as I physically have been quite tired and all that. I don't lie awake worrying about what if or whether there is...And I think that the good thing is actually that because it's now completely clean on my right breast, that's that we're done with that. And I remember seeing Jocelyn for the last time somewhere in September. And you said to me, I'll see you in May. And I left and I was a bit lost. What do you mean? I'm no longer your patient? What am I gonna do now?
Kellie Curtain [00:24:53] And that's very common for many of our women, when the treatment stops and you’re at the other end, and it’s what do I do now…
Jocelyn Lippey Yes. Yeah. I mean, I think a lot of women at that point have a really strong sense of anxiety. Because you've sort of got a security blanket in a way when you're having such intensive treatment and you're seeing lots of people. And then it's like, what? What do you mean six months?
Ellis Zonderhuis [00:25:07] I can't talk to anyone or and I'm supposed to be normal. I'm not because that takes time. Yes. But other than that, I'm extremely impressed because I didn't know anything about these fields. What can be done? How was I didn't realise how your own body could be a donor? How? For me, plastic surgery. And I really do apologise to all the billion people out there was about enhancement of your looks. And now I understand the complexity of it and what it all means. Yeah. To fix it all up. And it's amazing. It really is amazing. So very pleased. Yes.
Kellie Curtain [00:25:48] So, Jocelyn is there any correlation between if you've had DCIS that you're more likely to get a separate cancer or are they ever linked?
Jocelyn Lippey [00:25:58] They are linked because it relates to cell division. So it DCIS just starts from a couple of cells that have divided badly. And so if you have had DCIS you are at a higher risk of having it on the other side or having cancer on the other side.
Kellie Curtain [00:26:15] Okay. So what lifestyle changes can people make to help reduce their risk?
Jocelyn Lippey [00:26:22] Yeah. And so the general advice that we give for women in terms of reducing their risk of developing breast cancer before as well. So it's about keeping a healthy BMI and that's more important after you've gone through menopause than before menopause, but at any age. Regular exercise is a really important factor. And the recommendation is one hundred and fifty minutes a week, which is three sessions sorry, five sessions of 30 minutes a week. It is quite a bit of exercise and that's supposed to be proper good going cardiovascular exercise when you're a bit short of breath throughout it. The other thing you can do to reduce your risk is related with alcohol and the relationship with with alcohol is actually a little bit depressing. So if you drink more than two glasses a week, your risk is higher.
Ellis Zonderhuis [00:27:10] Yeah. That was my face!
Jocelyn Lippey [00:27:16] Because the recommendation generally is that for a woman you can have one glass a day that's safe, but for cancer risk, it's not. And so there are other things that you can change. There are things that impact your risk that you can't change like your genetics or your breast density. But they're the things that you can impact.
Kellie Curtain [00:27:34] Jocelyn and Ellis, thank you for joining us today on Upfront, which was produced thanks to Dry July. If you'd like more information on DCIS BCNA's My Journey online tool is a fantastic resource and easy to download. The opinions of all our guests are welcome, but not necessarily shared by BCNA. Of course, if you have any individual concerns, please contact your health professional. I'm Kellie Curtain. Thanks for being upfront with us.
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