Ginny Mason, RN: An Overview of Inflammatory Breast Cancer

Ginny Mason, RN, Executive Director of the Inflammatory Breast Cancer Research Foundation, gives an overview of inflammatory breast cancer (IBC) symptoms, how it presents, as well as treatment options.

Advocacy in Action videos at the American Association for Cancer Research (AACR) Annual Meeting 2012 was made possible, in part, by:

VIDEO TRANSCRIPT

Selma Schimmel, Founder & CEO, Vital Options International

This is Selma Schimmel in Chicago at the AACR annual meeting, the American Association for Cancer Research bringing you Advocacy in Action special with our advocate in action, Ginny Mason, Executive Director of the Inflammatory Breast Cancer Research Foundation. It’s great to see you again, Ginny.

Ginny Mason, RN, Executive Director, Inflammatory Breast Cancer Research Foundation

Thank you, Selma.

Selma Schimmel:

Explain to us what is inflammatory breast cancer? Why is it different than some of the other breast cancers?

Ginny Mason, RN:

Typically there’s not a palpable lump associated although often people as in my case had invasive ductal-carcinoma as well as inflammatory. I have a third kind too; I’m always an overachiever. I have to do more than one. But it presents much differently. Typically it is not found on a mammogram, might be seen in ultrasound but we tend to be younger women in our thirties, forties and fifties, so you’re dealing with dense breast tissue, which isn’t good for a mammogram as well. And looks often like an infection, there’s redness, swelling, maybe itching, pain….

Selma Schimmel:

Is that what leads a woman to a doctor, usually?

Ginny Mason, RN:

Exactly. And these symptoms come on quickly, and that’s what’s so troublesome to the patient. There are women who tell me they go to bed one night with no symptoms, wake up in the night and think ‘did I bump into something today or what did I do?’ and they get up and they see this red, swollen, painful breast.

Selma Schimmel:

How long does it usually take for the cancer to have been there before the symptoms presented?

Ginny Mason, RN:

No one knows for sure but when you talk about standard breast cancers have maybe as long as a ten year time from the time they begin to develop until they can be felt by a palpation or even picked up by mammogram. It’s a much longer period with inflammatory, the guess is that it’s a very short time; probably weeks. This has the fastest, what they say, doubling time of any kind of cancer.

Selma Schimmel:

And how is it diagnosed?

Ginny Mason, RN:

There is no – and this is one of the frustrations – there is no molecular test right now or blood test or anything that would say this is inflammatory breast cancer, it is still a clinical disease.

Selma Schimmel:

Imaging isn’t effective?

Ginny Mason, RN:

You might see on a mammogram there might be increased density.

Selma Schimmel:

What about MRI?

Ginny Mason, RN:

Sometimes it will show there. The definitive diagnosis comes from a biopsy of the skin, so something like – it’s about the size of your little finger punches the skin, what’s called a skin-punch biopsy – and usually a couple of those are done in areas where you see change in the tissue, the redness or the swelling.

Selma Schimmel:

So the biopsy isn’t like a core biopsy?

Ginny Mason, RN:

Right, because inflammatory breast cancer grows in the lymphatic layer of the skin, hence the way the tissue responds when the lymphatic channels are blocked you get the swelling, you get the redness, and all those things that look like an infection because the tumor cells cluster…my pin shows a cartoon of a tumor cell cluster and block that flow of fluid. And so it can be challenging to get an adequate diagnosis because it’s not a common cancer, fortunately.

Selma Schimmel:

And it sounds like a painful cancer.

Ginny Mason, RN:

It is, and often that’s the first thing you’re told: ‘oh if it hurts it can’t be cancer’.

Selma Schimmel:

Correct.

Ginny Mason, RN:

We often tell people that when they’re trying to get a diagnosis, when they’re struggling, to contact a breast center and talk to a breast health nurse there and say ‘who in your institution has expertise in dealing with inflammatory breast cancer?’ If they’re at the point of diagnosis we say ‘ruling out the disease’, if they’ve gotten a diagnosis who should they see in that institution for treatment. Because often the nurses have a better handle on that than if you call an office and just talk to a scheduling person who may not have that information.

Selma Schimmel:

Treatment for inflammatory breast cancer; talk about that.

Ginny Mason, RN:

Typically you have chemotherapy first because this is considered systemic disease at diagnosis, it’s already in the lymphatic system, it’s out of the four stages of breast cancer, it’s either at a 3B, C, or may already be metastatic at diagnosis, stage 4. And so chemotherapy is given to reduce that tumor burden before any other kind of treatment is considered.

Selma Schimmel:

What is the surgical option?

Ginny Mason, RN:

Typically if you have a good response to the chemotherapy and there has not been any metastatic disease evident then a mastectomy and usually a full lymph node dissection, although that’s a part that’s in constant discussion, I think, the removal of lymph nodes.  If it’s already assumed to be there, is it necessary to remove all the lymph nodes?

Selma Schimmel:

And in lieu of surgery is radiation ever used?

Ginny Mason, RN:

Radiation is almost always used because this is in the skin, and that’s one of the few methods to maybe destroy any remaining cancer cells.

Selma Schimmel:

So it’s mastectomy and radiation.

Ginny Mason, RN:

Right, the full – as people say – slash, burn and poison. It’s the whole (inaudible).

Selma Schimmel:

So it’s very, very aggressive treatment because unlike other breast cancers where you can somewhat spare the surface layers of the skin and hone in the radiation closer to the tumor site, in this case you purposely have to radiate the skin so even the treatment is painful.

Ginny Mason, RN:

Correct. And there are some centers that are even doing twice a day radiation in an effort to try and control that recurrence because it frequently does recur in the skin, and once you develop something called skin metastasis or (inaudible) metastasis they can be very, very difficult to control.

Selma Schimmel:

Is inflammatory breast cancer a disease that is at great risk just at metastasis?

Ginny Mason, RN:

Yes, and the problem with it being such a fast growing cancer often by the time of diagnosis since you may be on an antibiotic round or two, and doctors arguing about whether this could actually be inflammatory breast cancer, it’s moving through the body quickly.

Selma Schimmel:

So it’s delayed sometimes, I’m going to guess more than sometimes in diagnosis.

Ginny Mason, RN:

It’s been real important to work with the National Comprehensive Cancer Network on their breast cancer screening guidelines as well as their treatment guidelines to help those who don’t see it on a regular basis understand what they need to do.

Selma Schimmel:

Yes, it would seem to me that because it presents so differently than the majority of other breast cancers that there needs to be more patient educations so when you talk about self-breast exams and screenings and what to look for, this one is easy to fall through the cracks because you may be getting mammograms but that doesn’t mean you’re going to be able to get an early diagnosis.

Ginny Mason, RN:

Right, that’s one of the reasons we use the tagline that ‘you don’t have to have a lump to have breast cancer’ because we’ve been inundated with the information about get your annual mammogram, if it comes back fine you’re good. I had a mammogram that said there was nothing there and I had (inaudible) symptoms but the radiologist said ‘I don’t see anything on the mammogram, you’re fine’.

Selma Schimmel:

And you also mentioned that this is a cancer that’s more prevalent in younger women. So would you call this one of the younger adult cancers that one could be at risk for?

Ginny Mason, RN:

Absolutely. We do try to get our message out, particularly to young women, to pay attention to their bodies. It costs nothing to look in the mirror, to pay attention to changes and we tell people that you need to know what normal looks like for you. Get out of the shower and stand and look in the mirror for a moment, raise your arms, pay attention.

Selma Schimmel:

It’s not just palpation.

Ginny Mason, RN:

No, in fact a lot of inflammatory is looking. The skin may look dimpled, and if you see a change that does not go away on its own within a week or two…we all have changes – you have rashes, you have bug bites, you have any number of different things can happen – but if it doesn’t go away in a two week time period, I say, it’s time to see someone and get to the bottom of things. So you have to take responsibility for your health.

Selma Schimmel:

Ginny, I get to see you a few times a year at these different conferences; always find you to be energetic, passionate, articulate, and a real pleasure to talk to. You’re smart and committed; you taught us a lot today.

Ginny Mason, RN:

Thank you. I continue to learn and feel like…I hoped we would be at a point by now after 13 years when there would be no need for our organization. But I’m committed to it as long as I’m on this side of the grass by continuing to do well. I’ll keep at it till we don’t, when I can go spend time with my grandchildren.

Selma Schimmel:

I hear that. Thank you Ginny Mason, Executive Director of the Inflammatory Breast Cancer Research Foundation. Thank you, Ginny.

Ginny Mason, RN:

Thank you.

END OF VIDEO

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