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What Is Inflammatory Breast Cancer?

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Published on February 21, 2020

Inflammatory breast cancer (IBC) is a not a death sentence, but it’s also not a typical breast cancer diagnosis. How is IBC different?

Patient Power's Andrea Hutton, a breast cancer patient and advocate herself, interviews Ginny Mason, IBC patient and Executive Director of the Inflammatory Breast Cancer Research Foundation. Watch as they discuss the symptoms that can appear overnight and the treatments and support available.

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Transcript | What Is Inflammatory Breast Cancer?

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrea Hutton:       

Hello, I'm Andrea Hutton from Patient Power and today I'm in the San Antonio Breast Cancer Symposium, the largest breast cancer meeting in the world. And I'm talking with Ginny Mason who is the Executive Director of the Inflammatory Breast Cancer Research Foundation. Ginny, thank you so much for joining us.

Ginny Mason:          

Oh, thank you. 

Andrea Hutton:       

And you are also a breast cancer patient, metastatic breast cancer patient, living with metastatic breast cancer for 25 years.

Ginny Mason:          

Well, I'm an inflammatory breast cancer patient diagnosed 25 years ago, stage IIIC, which means my toes are over the edge of the cliff and have been there for 25 years waiting to fall off the edge. I've had four diagnoses short term that were metastatic that were later reversed due to a biopsy. But one-third of inflammatory breast cancer patients are metastatic at diagnosis, and another one-third become metastatic during the course of their treatment. So, it's an area where we need to be very active and have a voice.

Andrea Hutton:       

Can you tell me what is inflammatory breast cancer? Why is it different from other things that I may know about? 

Ginny Mason:          

It's a clinical diagnosis as opposed to a pathological, and that's where it becomes an even more challenging diagnosis.

Andrea Hutton:       

And what's the difference between those two things? 

Ginny Mason:          

Clinical is what it looks like. Pathological is what the cells look like. So, we also are diagnosed with either invasive ductal or invasive lobular breast cancer. Mostly ductal but there are lobular cases. But you can put five doctors in a room, they'll all look at the same breast, three might say it is, two will say no or vice versa, because it's so subjective. 

The textbook pictures are very extreme and many of us don't have those kinds of extreme symptoms. So, it's very confusing. Many women see their primary care or OB-GYN when the symptoms appear. They're put on an antibiotic, because it looks like mastitis, no response, another antibiotic, often there are three or four antibiotics, still not improved. They finally get to a surgeon, and they've got metastatic disease.

Andrea Hutton:       

And is that why so many present originally with metastatic disease because of the delay in…

Ginny Mason:          

…possibly. The other is this is an incredibly fast-growing cancer. Women tell me they go to bed with no symptoms, get up and in the shower notice their breast is painful, and they look in the mirror and are like, "It didn't look like that last night."

Andrea Hutton:       

Overnight it can appear?

Ginny Mason:          

In fact, that's one of the primary characteristics is the rapid onset of symptoms. Locally advanced breast cancer can have many of the same symptoms, but you'll see that over a long period of time, usually more than six months. And some will call that a neglective breast cancer, because you've seen things, but you don't act on it. So, there's a distinction, and sadly there are still doctors who don't think inflammatory breast cancer is its own disease, because we don't have a specific molecular marker. We are triple neg, higher—incidence of triple-negative, higher incidence of , but we're all of those.

We're not all metastatic. We're—a third of us stay, like me, hanging in there at the edge and so we don't fit in anybody else's basket. So, we kind of say we’re the ugly stepsister of breast cancer. And because it's so aggressive and we have—we account for a high percentage of the annual deaths. I read a poster recently that said, 10 percent of the annual deaths to breast cancer are inflammatory breast cancer. 

Andrea Hutton:       

And it sounds like because there is so much disagreement even in the medical community about it, what would be the first thing as a patient. I would need to know if I was in that circumstance, where my doctor's not really sure what's happening?

Ginny Mason:          

I encourage patients to—if they do one round of antibiotic, that's reasonable to rule out that it's not an infection. But you really have to be your own advocate and if someone says, "Oh, this is no big deal," you have to find someone else. Then you keep asking. Sometimes if women can't get a biopsy from a surgeon, a dermatologist will be quick to do—it's a skin punch biopsy. It's very simple. It's done in the office. It takes a pencil eraser size, you need to do a couple, because these cells grow in a cluster. And it's easy to do the punch between and miss and then, of course, you don't get a diagnosis. But it takes a lot of self-advocacy still.

We're working with—we've put together a focus group with Komen and the Milburn Foundations and have raised some funds to develop a better diagnostic criteria that would be a checklist that goes through so that primary care doc or OB-GYN can say okay, you need this, this, this and this. And if your score is such that you should be referred, we hope to get people referred quicker, and also that will help define this population of cancers so that somebody's not looking in research at samples that aren't truly inflammatory breast cancer. There's so much ambiguity, and it's just stunning to me to think that some of those haven't changed in 25 years. 

Andrea Hutton:       

And with all the change we've had.

Ginny Mason:           

And it's—exactly, you would think with as fast as science moves that we would be further ahead than we are with inflammatory but we're such a small subgroup. SEER data shows us as one percent of invasive breast cancers. But again, who knows? We have no diagnostic code. We just fall under regular breast cancer and so, unless there's something in the narrative in someone's medical record, it's pretty hard to see. 

Andrea Hutton:       

So, we don't really know what the numbers are… 

Ginny Mason:           

Precisely.

Andrea Hutton:       

…because there's no way of tracking that right now.

Ginny Mason:          

Exactly.

Andrea Hutton:       

And are the treatments the same as other breast cancers?

Ginny Mason:          

Same basic drugs, simply because there's nothing specific for inflammatory breast cancer. The big key is we always get neoadjuvant or chemotherapy before any kind of surgery and that—I'm very fortunate that that was a very new idea 25 years ago and my doctors called the National Cancer Institute and said, "What do we do?" They had had one other patient and she had died during the course of treatment and I was younger, and I think they were probably more invested in trying to keep me alive because of having had that experience, and so they tried neoadjuvant therapy for me. So, I was the first person in my hospital to ever receive chemotherapy before surgery for breast cancer.

And that's kind of the key, is what they call tri-modal treatment, is neoadjuvant chemotherapy, surgery if it's appropriate and it's a mastectomy. No such thing as a lumpectomy if you don't have a lump. And then radiation and the best outcomes have come from doing all three. Now, if you're a metastatic or stage IV at de novo, at the start of your diagnosis, you may not have surgery. That's still a very controversial topic in the field. But those are the kinds of things we encourage people when they contact us, these are the things you want to do. 

And even if you have a very good response to chemotherapy, and they see the pathology and say it looks good, there's a temptation to skip the radiation. You would like to do that but skin metastasis or the disease coming back in that mastectomy scar area because this grows in the lymphatic layer of the skin is very, very high. And that's a challenging aspect to treat. 

Andrea Hutton:       

And tell me about the Inflammatory Breast Cancer Research Foundation. What do you do?

Ginny Mason:          

We do research grants, we try to be a platform for information, we have a really wonderful medical advisory board that reviews everything on our website and makes sure that we're giving solid medical information. We're very careful to say we're not giving medical advice. I have to be especially careful because I have a nursing license. But to be there we provide one-on-one support to someone, help guide people to clinical trials, maybe find a doctor in their area that maybe has more expertise, again, we don't officially do referrals. We try to be everything we can to someone, but we try not to duplicate general breast cancer information that's out there because there's such good—we're great collaborators.

We'll collaborate with everyone if we can, because there's no point in redoing something that someone's doing well. Because of the push in more recent years of more people living longer with metastatic disease and that being an important piece of who we are, that's why we joined the Metastatic Breast Cancer Alliance shortly after it was formed to make sure our voice was in that place too. But being an organization that has a foot in both camps, we have to figure out how to work that so that we don't over bombard people who aren't living with metastatic disease every day and balance that. 

Andrea Hutton:       

I think it's amazing and wonderful that now people who are diagnosed the way you were now have somewhere to turn and have that experience of talking to someone else. It's so important for breast cancer.

Ginny Mason:          

No question.

Andrea Hutton:       

Any patient to be able to share their experience with somebody who's been there. 

Ginny Mason:          

I would notice, when we first started the toll-free line and someone would call having just been diagnosed and they are just, "Is it even worth doing treatment?" And when I would say, "Okay, I'm five years from my diagnosis. I'm doing well. Yes, it's a scary disease." And you sometimes could hear an audible sigh that someone's like, you're alive? You know, you've had this? And I've even had—I had talked two patients into going ahead and doing treatment who weren't going to do it. They thought there was no point, they were going to die anyway. And so, I think it is incredibly powerful and we sometimes don't realize how powerful those of us who have been through pieces of the treatment to share that with others what that does for them. And I benefit as well.

I mean anybody who volunteers and gets into this advocacy thing we get an equal amount out of it, I think, because you go to bed at night hoping you made a difference for somebody else.

Andrea Hutton:       

Well, I know you do.

Ginny Mason:          

Well, thank you. I hope so. 

Andrea Hutton:       

And what's the one thing that you would like to tell anybody at that first moment of hearing that they have IBC, inflammatory breast cancer?

Ginny Mason:          

It's not a death sentence. You have a choice. Any cancer diagnosis, you have a choice to die that day and wait for your body to catch up or you can choose to live each day the best you can because none of us are guaranteed tomorrow. And I think that was the wakeup call for me. Anyone who knew me 25 years ago still is surprised I'm who I am now because I was the good, quiet pastor's wife. I didn't make waves. I was not the self-advocate.

When that radiologist told me to go home and stop whining, I didn't buck him. Nowadays he wouldn't get by with that. And I just realized this isn't a dress rehearsal and I have a responsibility. If I could be told I'm going to die in 12 to 18 months when I'm 40 years old, had a 3-month-old grandchild that I wanted to see grow up, I was just not going to let that happen. I knew 3 percent in the statistics said you make it 5 years. I took statistics. I was aiming for that 3 percent. And it really does change your outlook, as you know. And I've gotten to live to see that granddaughter grow up, get married and I'm a great grandmother, so there's hope no matter what. 

Andrea Hutton:       

Absolutely and thank you so much for sharing your knowledge and offering us hope as well.

Ginny Mason:          

Absolutely, thank you.

Andrea Hutton:       

Thank you.

Ginny Mason:          

I'm always glad to share.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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