What You Need to Know About Inflammatory Breast Cancer

Welcome to The Breastcancer.org Podcast, the podcast that brings you the latest information on breast cancer research, treatments, side effects, and survivorship issues through expert interviews, as well as personal stories from people affected by breast cancer. Here’s your host, Breastcancer.org senior editor Jamie DePolo.

Jamie DePolo: Hello, as always, thanks for listening. Inflammatory breast cancer is a rare and aggressive type of breast cancer. Only about 1 percent to 5 percent of all breast cancers diagnosed in the United States are inflammatory. This type of breast cancer tends to be diagnosed in younger women and has very different symptoms than other types of breast cancer; it can be mistaken for an infection.

To help us understand inflammatory breast cancer and how it’s treated, I’m pleased to have Dr. Filipa Lynce as our guest today. She is a researcher, medical oncologist, and director of the Inflammatory Breast Center at the Dana-Farber Cancer Institute. 

Dr. Lynce welcome to the podcast.

Dr. Filipa Lynce: Thank you so much for having me. 

Jamie DePolo: So, since inflammatory breast cancer is rare, and its symptoms are different than the other types, I have read that it can be misdiagnosed at first. So, could you go over the symptoms of inflammatory breast cancer and sort of give us an idea how somebody can tell if it’s inflammatory breast cancer or an infection?

Dr. Filipa Lynce: Sure, Jamie, and this is a great question.

So, the typical findings of inflammatory breast cancer are swelling and redness in the breast. Sometimes it even looks like the skin of an orange, a condition that we call peau d’orange. You can also present with nipple changes or feeling that one breast is bigger or larger than the other, or heavier. I have patients say, you know, it seems that one breast fits in the bra as always and the other no longer fits, which is so unusual.

You know, and it’s all these findings that lead to the name of inflammatory breast cancer because it is how the breast looks like, the breast looks inflamed. 

Now, infection of the breast, for those who already have an infection of the breast before, can present with these very similar findings. So, it is very common, and not wrong, to start with a course of antibiotics because an infection of the breast, also known as mastitis, is more common than IBC, as you just said that it’s a rare disease. But what I always tell patients is, its symptoms, if you are finding that it does not completely resolve after a course of antibiotics go back to your doctor. You will probably need breast imaging and even possibly a skin biopsy. 

What I want to make sure that doesn’t happen is that people receive a course of antibiotics, they feel that things are a little bit better, but not really, and most of the symptoms are still there, but they don’t want to go back to the doctor because they feel, oh, he already saw me, he already gave me these antibiotics, I’ll just wait to go back. And then we have weeks or months that the patient is at home with the symptoms getting worse and we missed an opportunity to diagnose this disease earlier on. 

So, you know, we see often that patients are told perhaps they have mastitis. They are appropriately treated for mastitis, which is again, infection of the breast, there is the course of antibiotics. But if your symptoms do not go away after that course of antibiotics go back to your doctor.

Jamie DePolo: Okay. And you talked about diagnosis. How do you diagnose the disease? 

Dr. Filipa Lynce: So, it’s a complex definition and I’ll go through what this means.

So, our staging system says that inflammatory breast cancer is a distinct clinical pathological entity. So, what do these words mean?

It means that if we start by the end, pathological means that someone needs to have a diagnosis of breast cancer confirmed on biopsy. So, you need a biopsy that says that you have a diagnosis of invasive breast cancer. But along with that you need to have the characteristical clinical findings that we just discussed. 

Now, I just started by telling you that these symptoms can be misinterpreted as mastitis or as an infection of the breast, so you can already start seeing that there may be ambiguity in the diagnosis, and that the diagnosis can also be overly dependent on provider’s experience. If you see one patient with IBC a year or even less than that, opposed to if you see one or two patients of IBC a month. So, for that reason we, as an IBC group, have been trying to work on making the diagnosis more objective. So, a few years ago there was an IBC taskforce that was brought together by different groups that included Susan G. Komen, the IBC Research Foundation, and the Milburn Foundation, and really the goal of bringing a group of experts together was to refine the IBC diagnostic criteria. 

What is this? So, this criteria is a proposed set of factors that we think that are important when it comes to identify inflammatory breast cancer and they are, and this scoring system is being developed to increase the accuracy of diagnosis, help providers that are seeing these patients, guide treatment decisions, and even decide about whether this patient is likely to have IBC and would be appropriate to participate in clinical trials to help move the field forward.

Jamie DePolo: Okay, perfect. So, it sounds like it’s definitely… somebody would have to have a biopsy before officially being diagnosed, is that correct.

Dr. Filipa Lynce: For sure. 

Jamie DePolo: Okay.

Dr. Filipa Lynce: Sometimes we have patients that call and say, you know, oh, I have redness in the breast I just noticed a few days ago. Another thing that I did not mention is that these symptoms… usually there’s rapid onset. This is nothing that one says, oh, I’ve had this redness in my breast for two years. No, that is not IBC. IBC, you talk to a patient and she clearly tells you, and I say she because the vast majority of the patients are women, although men can have it as well, but the patients clearly tell us, listen, you know, in the summer, two months ago, or one month ago, I was going to the beach or to the pool and clearly this was not there, so this started a couple of weeks ago. So, this is the typical case of IBC, so rapid onset. 

Jamie DePolo: Okay. It seems that inflammatory disease is more common in women younger than 40, Black women, and women who may have some excess weight. Do we know why that is?

Dr. Filipa Lynce: Jamie, this is so concerning.

So, yes, there are studies showing that inflammatory breast cancer affects disproportionately young women and African Americans when compared to breast cancer in general.

We also know that excess weight seems to play a role not only in post-menopausal women, which is known in general to be a risk factor for breast cancer, but also to play a role in pre-menopausal women and being a risk factor for developing IBC.

But what we haven’t been able to identify yet is what is the specific driver mechanism of this disease, and in particular why it’s happening more often, you know, in these groups. So, it even makes it more important to focus our efforts to research and clinical efforts in inflammatory breast cancer. 

Jamie DePolo: Okay. Okay, thank you.

Now, my understanding is that inflammatory breast cancer is at least stage IIIB when it’s diagnosed -- which is advanced stage -- or stage IV, and is that because it’s often diagnosed later on, like, it’s difficult to diagnose it early?

Dr. Filipa Lynce: Very good question and this makes us think a little bit about two things.

On one hand, for sure, we see delays in diagnosis because it all starts as a mastitis, but then if the symptoms, or not that it starts as a mastitis, but often patients are told that they have a mastitis and then there is delay in moving to the next step, that is the symptoms did not get better, the breast is still red, now we need to get a mammogram, an ultrasound, sometimes an MRI, and often a skin punch biopsy as well. 

So, we’ve seen delays in these steps that make it, you know, an important number of patients presenting already with metastatic disease, meaning stage IV disease.

But let’s imagine even in the patients that she noticed that her breast was more swollen than the other breast, she noticed the redness, she seeks immediate attention of a provider, either her primary care or her gynecology, or her breast surgeon, and she has prompt imaging and biopsy, you know, and one week later we have the diagnosis made, she still has stage III disease. 

And why is that? It is because given the involvement of the skin, according to our current classification criteria, any patient that presents with inflammatory breast cancer, the T that is for tumor -- so we use the T, N, M classification where T stands for tumor -- a patient that presents with inflammatory breast cancer gets immediately classified as a T4D. And anybody with a T4D, even if the N and the M, so going back to the T, N, M classification, N stands for nodes and M for metastasis. So, even if there is no involvement of the nodes, neither of these have metastasis, the fact that this is a T4D it automatically leads to a stage III. 

So, on one hand, it’s absolutely true that we see delays in diagnosis, but on the other hand even if there is a prompt diagnosis of IBC, that patient will have a stage III disease. And this is a very common question that we receive from our patients.

Jamie DePolo: No, no, that makes sense. I’ll just paraphrase it back to you. It sounds like it’s because the involvement of the skin, that there’s so much involvement there, so even if there are nothing in the lymph nodes, it hasn’t moved to someplace else in the body, it’s just because of that skin involvement that it automatically goes into stage III. 

Dr. Filipa Lynce: That’s correct. And that’s because of the T staging.

Jamie DePolo: Gotcha.

Dr. Filipa Lynce: That automatically puts someone that has IBC the staging is T4D. So, there is no such thing as a T2N0 inflammatory breast cancer.

Jamie DePolo: Okay, that does make sense.

Now, I want to move on to treatment because I know that’s very important. My understanding, again, is that surgery is often not the first treatment as it is for many other types of breast cancer, and I think that the surgery is usually mastectomy not lumpectomy. So, could you talk about some common treatment paths for inflammatory disease?

Dr. Filipa Lynce: That’s a great question. And we usually divide the treatment path by stage III or stage IV disease. Irrespective of someone having stage III or stage IV disease, again, stage IV when there is evidence of distant involvement of other parts distant to the breast, what we commonly call metastatic disease.

When we think about stage III, the common treatment path is starting by systemic therapy, again, because of the involvement of the skin, and you don’t want to do surgery upfront. It could be risky, could leave cancer cells behind and compromising the healing after the surgery, so we start with systemic therapy. 

Systemic therapy means anything, you know, that goes to the entire body, often chemotherapy with or without targeted therapies, in case that it’s HER2-positive tumor, or immunotherapy in the case of triple-negative breast cancer.

After a certain duration of the treatment, and when your surgeon agrees that they can take the patient to the operating room and remove all the breast and skin that have cancer, that is the second step.

And then to decrease the risk of the cancer of having what we call a local regional recurrence, the cancer coming back in the chest wall, this is followed by comprehensive radiation, so post-mastectomy radiation.

And in most of the cases there will be treatments, more systemic treatment after. 

There was a study, now published about 10 years ago, that looked at the national database and showed that the patients that had better outcomes were the ones that received these three types of treatments, meaning systemic therapy, surgery, and radiation. And that’s why since then this has become the standard of care for the treatment of inflammatory breast cancer, and that’s why it’s called trimodality therapy.

So, systemic therapy followed by surgery, followed by radiation, and in most of the cases, systemic therapy again, after. Of course, you know, we know more in 2024 than more than 10 years ago when this study was conducted, so we are also, I would say, much more thoughtful about all the side effects associated with the treatments we offer to our patients. 

So, there have been efforts to try to see how can we safely de-escalate some of these treatments to our patients. And there are ongoing clinical trials asking these questions. Can we do less axillary [lymph node] surgery? Or can we keep some patients from having to have most of their axillary lymph nodes removed? Can we do, in some cases, immediate reconstruction and not having to wait about six months after radiation to do it?

So, there are many clinical trials ongoing trying to answer these questions. I encourage patients that are currently being diagnosed with IBC to participate in these trials if they are available at your institution. But until we learn more, I would say that for the vast majority of the patients with inflammatory breast cancer and stage III disease, the standard of care is trimodality therapy. 

Now, when it comes to stage IV disease, I think that there is a little bit more discussion about, is still this trimodality therapy the best for these patients? And in particular because of the risk of local recurrences as we spoke about a little bit ago. Or should these patients be treated the same way as other patients with stage IV disease? Meaning that the treatment really is mainly on the systemic therapy. So, I think that this is an ongoing question. Most of the centers discuss or make these decisions along with the patient on a case-by-case situation. We here at Dana-Farber are conducting a trial to learn about what is the impact on the quality of life of either having this approach of trimodality therapy for patients with stage IV disease or not having it. So, we hope that in the next few years we’ll able to share the results.

Jamie DePolo: Okay, that’s wonderful. And I just have one more question. I know that triple-negative breast cancer, invasive ductal disease, is likely to come back, say, within like five to 10 years after diagnosis, but hormone receptor-positive disease can come back up to 20 years after diagnosis. And I’m just wondering for inflammatory disease, inflammatory disease, is there sort of a set time for recurrence? Is it more likely to come back than other types of breast cancer? Or is that something that’s being studied?

Dr. Filipa Lynce: Great question, Jamie. Again, you really have all the great questions, so it makes my job much easier to answer them because all of them are right on the spot.

So, in general inflammatory breast cancer is more likely to recur when compared to the same stage and same receptor status of breast cancer in general. So, this is what we say in general. So even patients that achieve a great response after going through chemotherapy upfront, their likelihood of doing well and never having the cancer coming back is slightly worse than if those have achieved the same results without having the inflammatory symptoms you see with inflammatory breast cancer. So, that is in general. 

However, we are learning more and more that not all inflammatory breast cancers are the same and the HER2-positive inflammatory breast cancer seems to respond well to the HER2 targeted therapies, in fact, respond very well and perhaps do almost as well or the same way. I don’t want to say, you know, as well. It’s just a word that doesn’t go along very well with a diagnosis of breast cancer. But the HER2-positive inflammatory breast cancer seems to have similar behavior to HER2-positive breast cancer in general. 

On the other hand, triple-negative inflammatory breast cancer seems to be quite aggressive and more aggressive than triple-negative breast cancer in general that, as you pointed out, is already, you know, known to be aggressive, associated with most of the recurrences are going to happen in the first three to five years after diagnosis. So, you are correct there is more recurrences, but even more so when we talk about triple-negative IBC. 

Jamie DePolo: Okay. Dr. Lynce, thank you so much, this has been so helpful. I wish you much success with your trials and thank you for informing us. I appreciate your time.

Dr. Filipa Lynce: Thank you, Jamie, for having me. This was wonderful and thank you for bringing awareness to this important disease that really needs all our efforts from the research and clinical standpoint to improve the outcomes of our patients. 

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