A Breast Cancer Terminology Primer

A Breast Cancer Diary

This week I've decided to define some terms that came up in my interview with April Stearns last Sunday, for the sake of those new to breast cancer culture. Hope this is useful to you!

Transcript:

Welcome back. Today, I'm going to be doing another one of my reflection episodes. This is going to be purely a reflection on the last episode. So if you haven't heard my interview with April Stearns from last Sunday, this episode may not be quite as useful to you, but it could be. This episode and episodes like it, where I'm defining terms--really, it's probably just going to happen in the first six months of the podcast because I'll run out of terms to define--but it's really there for those of you who would like to stay in the cancer community and become advocates and ambassadors and allies. For folks who want to learn the terminology, I just want to take some time and help you to do that in a way that's a little bit more relational. So I decided a few weeks ago that I just wanted to take a little bit more time and go in between my interviews--go through some of the terms and definitions that folks don't know at the beginning of their cancer journey.

I'm assuming that most of my audience is at the beginning of your cancer journey. And that's what I'm getting on my YouTube following. I'm getting brand new folks who are diagnosed, so please indulge me in this. And if it's not useful to you, then absolutely skip or fast forward, and join me next week because I'll have another interview next week.

But I want to just talk about a multitude of definitions that came up in my interview with April Stearns because April is a really solid, grounded, very connected member of the breast cancer community. She referred to a lot of concepts that may not be easily identified or understandable to others who are brand new to it.

I'll go through them as quickly as I can, trying not to get off on too many rabbit trails here!

The first one is NED. And that is an abbreviation for "no evidence of disease." It is a term that we talk about once we are through treatment and mastectomy or lumpectomy when the cancer is apparently gone from our bodies. This is a term that we've used probably in the last 20 years, instead of the phrase that we used to use, which was "in remission," and I am not going to pretend to understand why we made that change, or even really the complexity of the difference of those two phrases. I think they're pretty similar, really. "No evidence of disease" acknowledges that there probably still is some remnant of disease in our bodies, either circulating or not circulating, just kind of laying dormant. We're learning more and more if you're following the science of breast cancer, that there is this concept of dormancy that is a little bit frightening. It's, it's implying that there is a cancer cell or some cancer cells that are kind of "hiding out" and not waking up and then maybe able to wake up at some point. And so I think "no evidence of disease" is a phrase that's used to acknowledge that fact, that there may be disease in a body, but it's not showing itself by symptoms or certainly not visibly in scans or blood markers.

Any kind of surveillance that we may be doing (which usually we're not doing after we've done all of our treatment or had our lumpectomy or mastectomy) but if we were to do, any kind of scans, if you do follow up mammograms, if you still have some breast tissue in there, then you're considered to be no evidence of disease until those scans show something.

And then there's a similar term called "no evidence of active disease," so you're adding an A in before the D, and that is usually used in reference to a metastatic patient, so someone with stage four cancer that is considered to be chronic. Active disease is kind of the default for a metastatic cancer patient, but many, many times you will have the active disease and just stop, either in response to treatment or randomly just stop growing, and just sit there and not grow anymore.

And that is kind of a signifier that there's a little bit of a respite time and you either continue with treatment or not continue with treatment, but there is a lack of growth happening. And so that is what is meant by no evidence of active disease as opposed to no evidence of disease.

The next term is survivorship. This is a very broad and vague term that I'm sure has many different definitions depending on who you're talking to. So I will not pretend to know a universal definition of it or present that to you here. But the most broad way I can describe it is just the period of time in your life after which you have had no evidence of disease after having breast cancer.

Survivorship is what follows breast cancer in a given patient's life. So it is all the time and all of the issues and quandaries and curiosities and frustrations, lifestyle modifications that come after breast cancer. When we're talking about survivorship, we're usually talking about a lifestyle change that happened to us that hasn't been reversed, hasn't been corrected or changed like medical menopause, like infertility, like, "How am I going to find out if I have breast cancer again when there's no good scan that can show me whether it's coming back until it's already back?"--those kinds of issues that come up after you've had breast cancer once and, you're just, you're, you're not back to normal yet. And that's Survivorship. Now, some women do go back to normal. Some women get cancer after they've hit menopause and they're not fertile anyway and they're not worried about recurrence and how they're going to track their likelihood of recurrence. And so those women are not concerned with survivorship. They don't identify as a survivor as strongly as the rest of us do.

So survivorship is more of a term you'll hear used in the young community of survivors of breast cancer, because the younger we are, the more our life is altered by breast cancer in a permanent and unforgettable and maybe unresolvable way. And so survivorship is a term that has some negativity associated with it.

It is not a term that we use. with a lightness or a sense of pride. Usually it is usually accompanied by grief. And that is my experience. That is not everyone's, but that is a loose definition just from my own perspective and experience of listening to other longer term survivors talk about their experience.

I'm still a very early survivor, but I'm, I'm not shying away from educating others. As an advocate, because I'm an educator by nature, number one, and I do believe that early on in your journey is when you're the best at educating others who are new. So. I'm certainly not the expert, but I'm willing to educate because I just see the value of it so, so much.

And speaking of young survivors, that's the next term that I wanted to define or attempt to define here today is young survivorship or the young survivors. You'll hear this referred to as more of a matter of pride and identity among folks who are diagnosed young with breast cancer. The word young is hard to define, and it definitely means different things to different people. I think that generally it is the case that. At least it's going to mean that you were in your 20s and 30s when you were diagnosed. And sometimes it will also include the next decade of being in your 40s when you were diagnosed. Almost always it's referring to the age of diagnosis and not your current age. But different organizations will have different parameters and boundaries around what they consider a young survivor. All I know is that Wildfire Magazine, which is the subject of our last interview, does define it by being in your 20s, 30s, or 40s when you were diagnosed and there's also a couple of other organizations that may define it differently. I have a local organization that does. It just says 20s and 30s, not 40s. There're some that go up to 45 and not 50. So it's a little bit loose and you, you kind of have to ask when you hear this, phrase in your community.

If you're wondering if you are included in the group, you just kind of have to ask cause it's not always laid out. It refers to not just those people that are diagnosed young, but all of those issues that are specific to a young survivor. So an early menopause, that fertility issue, some of the, the stronger reaction to a lack of estrogen in your body.

Even in menopause, we have some estrogen circulating that's created in the pituitary gland in the brain. Even if we don't have ovaries, there's some amount of estrogen that's circulating, and estrogen is such a healthy thing for our body. It's good for our heart. It's good for our brain. It's good for our skin and our vagina and all the things.

And so when you take it away completely, which is what these drugs do--not just the anti-estrogen drugs, the endocrine therapy drugs-- but also chemotherapy drugs can really strip you of your ability to circulate estrogen. And it is such a stark contrast when you're young and you're not gently evolving into it the way we were meant to as we go into perimenopause and then menopause.

So young survivors cling to each other because they're all experiencing these huge lifestyle and body transformation issues that are hard to resolve and really, I think they really induce a lot of anger and frustration in most of us. I do not count myself generally to be in that camp of young survivors because I was already really well through perimenopause when I got breast cancer or when it presented itself with symptoms. I was aware that it was in me, you know, 10 years prior when I was 40 and just entering perimenopause, but it didn't really come into my life in a way that needed to be addressed until I was almost 50. And so I'm right on the edge of being a young survivor and then not a young survivor. So hopefully that's helpful for folks. I definitely have a lot of empathy and interest in exploring the stories of young survivors on the podcast.

Similarly, there's a phrase that we referred to in the last interview called "Medical Menopause," and that is just referring to the fact that you went through menopause in an unnatural way because of medication that you took, either chemotherapy or endocrine therapy, which is an anti estrogen drug, either tamoxifen or an aromatase inhibitor like Letrozole and Anastrozole. So medical menopause is medically induced menopause that happens very suddenly, causes extreme symptoms of menopause and can be really, really hard to grapple with. It's often the main thing that is being discussed and that women are comparing notes around on Facebook groups, for example, or support groups.

So it is a huge topic of discussion. We will probably address it in at least half of the interviews that I sponsor here on the podcast. So it is something we will refer to a lot. And if you don't understand what that means, it could be confusing. It just means that you got menopause and usually irreversible menopause because of either the chemo that you took and or the endocrine therapy that you took because of your breast cancer.

There's a phrase that we used in the last interview called "Recurrence" and I think most people know what this means, but just in case you don't, I don't want to make any assumptions. Recurrence is when your cancer comes back. In any kind of cancer, it's always called recurrence, and recurrence could be referring to another primary instance of cancer. So another cancer that grew from a baby seed just like your first one did separately from your first one, maybe in a whole different breast or a whole different part of your breast. Or it could be in the same area coming from the same cells that were able to circulate somehow and hide out somewhere in your body.

So recurrence is just that general term we refer to as breast cancer coming back and there's a huge amount of fear of recurrence. And so the phrase "Fear of Recurrence" is a very, very common phrase in our vocabulary in the breast cancer community. And then we talked a little bit about this when I had Marquita on as a guest.

The, concept of HER2 positivity, April referred to this and, she said that she had estrogen receptor negative and progesterone receptor negative, but HER2 positive cancer. And that is just another combination of those three factors, those three markers that we talked about. in a former episode, but I just want to reflect a little bit more on HER2, because there were a couple of things I didn't say about it in my reflection on Marquita's interview.

And that is, HER2 status can really change. It can go back and forth, which is a little bit, maybe not as intuitive. Estrogen receptor status usually goes in the direction of negativity. We usually all start positive. And if you get metastatic occurrences and a lot of times that will go to negative status instead of positive status, where HER2 can go either direction it really can go can start negative which often does and it can go low or positive which is kind of on a gradient.

So it's it's kind of a adaptable marker and you cannot ever take it for granted that your her2 status is going to stay the same over time. So if you have metastatic cancer, especially, you want to kind of watch your HER2 status, see if it develops into positivity or low status and then if it does, you can treat it with a drug.

And there are a couple different drugs now that we treat it with and like April said, she was on Herceptin for 13 months, so a long time on it. But it is helpful because it gives us a way to treat that type of cancer and that marker.

And then we have a couple of terms that are more referring to the type of closure that April got, which was a flat closure.

And the two terms that we use, um, in the area of flat closure are "Aesthetic Flat Closure", and Goldilocks. Those are two terms that you may not be familiar with and they're really just referring to the way that either your breast surgeon or your plastic surgeon is closing you up after mastectomy if you're not getting an implant or a tram flap or diep flap procedure.

So I'm just going to do some kind of light definition of these terms and a little bit of background. So aesthetic flat closure is a medical term now. It was not a medical term, I think five years ago, but it is now considered to be normative in the medical community and the surgical community. And it was fought hard for by those advocates that are fighting for women to be offered the option to not reconstruct after breast cancer, after mastectomy.

And those that are very happy that they didn't get an implant and also those who did get implants, but who are, or were experiencing incidents of breast implant illness, which is a very common autoimmune disorder--a thing that happens when you put an implant into your body when you are prone to having autoimmune issues.

So there are a lot of women who are very passionate after having their implants explanted--that every woman who steps into a surgeon's office should be offered and, educated about the option of aesthetic flat closure. The reason it's called aesthetic flat closure is that traditionally, if women didn't get implants, they were left with extra skin that just, really was uncomfortable, ugly, just kind of flaps of skin hanging out just in case they ever wanted an implant or because maybe because insurance didn't pay for it to be made tight and made aesthetic.

But now insurance does pay for that. There are still a lot of women with extra skin and, a lot of times it will present in a way that it is interfering with movement and it is uncomfortable and, and a lot of women are very unhappy with that extra skin. So aesthetic flat closure is a way to ask for no extra skin--for your skin to be pulled tight against your body for there to be not extra skin "just in case" you decide someday that you want an implant.

And there's a little bit of a tricky quality to aesthetic flat closure because what I've noticed and I've been kind of entrenched in this debate and this community for a number of months now, I've noticed that people refer to aesthetic flat closure when they're talking about two different things--either aesthetic flat closure without Goldilocks, without extra skin underneath to pad what would have been a hollow spot... So right here, if you're watching me on YouTube, I'm holding the spot where I'm missing a lot of bulk and there's a hollow spot right here. And if I had had a Goldilocks on that side, I would have skin under there that would pad that and make me less hollow. Make me a little more perfectly flat, instead of concave.

And that would be called a Goldilocks. And sometimes a breast surgeon doesn't know how to do a Goldilocks. In fact, I think most of the time they don't. So you need a plastic surgeon to do that procedure. But a lot of times people will ask for a flat closure and what they mean is they want a Goldilocks. So they want actual flatness and we don't know until we take the breast tissue out how flat or how concave you would be. And so sometimes you kind of have to go into it with the allowance of hiring a plastic surgeon as part of your team to do that just in case you need that. And so flatness is not something you can really understand about yourself in advance of that surgery.... And sometimes you need a Goldilocks to even be flat so that you're not concave. Now, sometimes you have enough extra skin on your breast that you can also make yourself a mound. And that's what I did on my other side. So you can have a little bit of extra skin and you can have convexity, a tiny bit of a mound.

And that's also called a Goldilocks and that is not called aesthetic flat closure. So there's a little bit of a kind of overlap in a gray area and everybody's body's different. So you can't really predict very well what your aesthetic flat closure will be or what it will look like in the end. You can hypothesize and say what your ideal is, and that's what every surgeon wants you to do, but you can't really know what it's going to look like until you get there.

So, the main thing to know about Aesthetic Flat Closure is it's your right medically to ask for it and be given it. And that is really important because a lot of surgeons are biased in favor of providing extra skin, just in case, so leaving you with extra bulk "just in case" you "come to your senses" and want an implant and that is to, to a lot of us in the community is really offensive and condescending and medically wrong, unethical. So, I have a particular passion around this. And so I wanted to be sure and define it because it is kind of a confusing issue.

The other issue is a lot of us have never heard of aesthetic flat closure. And so we don't know about it when we go into mastectomy. We hear about it later and it's too late to ask for it at the time when we learn about it once we're in the breast cancer community. But it is something that we're hoping we will be able to get out a little bit sooner and reach people before they hit the surgery table and be able to talk to their surgeon about ahead of time as an option.

Hopefully surgeons will offer it as an option. That would be the best case scenario. So, and then Goldilocks, of course, we will save that topic for another episode. That's when you get a skin sparing mastectomy, and the skin is used to overlap itself underneath your breast mound, and depending on how much skin you have, you have a smaller or larger breast mound as a result.

So we also kind of talked about the term progression, and that's another really obvious term--doesn't need much explanation. It just means when your cancer is growing. Usually progression is a term that's used when you have metastatic breast cancer. And so progression just means it's progressing or it's growing. So that's another term that you'll hear used pretty often in metastatic circles.

I just want to say again that I am so thrilled that I was able to have April Stearns on so early in the history of this podcast, and if you are really hungry for more episodes, like what I've been offering, if this is the first breast cancer podcast that you found by some miracle, then please go and listen to The Burn because The Burn is, I feel like the closest thing to what I would like to emulate, in terms of providing stories, background, education, insight into all the different types of breast cancer experiences that are out there in a little bit more literary sense.

And one thing I didn't say in my last episode with it, the interview with April was that you are welcome to submit your essays. to Wildfire Magazine, even if you are not a professional writer, or even a very experienced writer, She is always looking for brand new writers to publish. And she is not a snob when it comes to publishing.

So if you have something to say, and you have something that needs to be shared. Um, and you write it and you feel like it's something that really communicates well about your breast cancer experience, then do send it April's way. There are different themes you want to submit it, you know, and ask for her to put it in the right magazine because different magazines have different subjects and themes.

But, or you can look up the subjects of the month and submit it just in time to be published. But either way, she's very willing to read and look at your. your essay or your poem. And I would love to personally read now that I have a subscription to the every other month wildfire magazine. I would love to read what you have to say myself. So I hope that you'll check it out and listen to The Burn in the meantime.

Next week I have a new interview with my friend Avena. She is a woman that I've known for about six months now, mostly online. We live pretty close to each other, but not close enough to hang out in person very often. But she is a veteran breast cancer survivor and she has had two different occurrences. She is an elder in my community and very wise woman. And I think what she has to share that is of value is around the topic of discernment. And she has a beautiful story wherein she tells about just fighting for her amount of time that she needed to make up her mind and do her research and find out what was best for her and kind of holding her doctors at bay in such a wise and careful and respectful way.

So I hope you'll tune in next Sunday and hear Avena's story. And I'm sure after that, the next week we will have another episode to kind of reflect on that. As I'm doing today, take care in the meantime!