Thriving with Metastatic Lobular Breast Cancer: Leslie Pifer-Pien

A Breast Cancer Diary

My friend and fellow lobular breast cancer awareness advocate, Leslie Pifer-Pien joined me on the podcast this week to talk about her first seven years as a metastatic invasive lobular breast cancer patient. Leslie was diagnosed de-novo, which means, she didn't start with the mild kind of cancer but went straight to stage four, or "metastatic" cancer. She's taken it in stride, but finding the right oncologist isn't easy with Lobular Carcinoma. Lisen in as we chat about all that she's learned.

Transcript:

K:

My guest today is my friend and local advocate, Leslie Pifer-Pien, who lives in Camas, Washington. She was diagnosed in May of 2017 with de novo metastatic breast cancer—lobular breast cancer. And she has a history of working as an electrical engineer as well as a college professor here in the Portland area with exchange students. Leslie and I just met about a year ago, and we worked together on the local advocacy teams with the Lobular Breast Cancer Alliance as local advocates, meant to be working in person together. But most of our contacts have been online still, but we did meet on national or global Lobular Awareness Day a couple of weeks ago for the first time in person. And that's when Leslie agreed to come on the podcast. Leslie is my first guest who is a metastatic breast cancer patient. I've been trying so hard to get my various friends who are metastatic to come on and they have all tried, but things have come up and gotten in the way. And I'm sure I'll have many more guests who are metastatic, but it's really important to me to feature the stories of patients who are metastatic because we just don't hear their stories often enough in the breast cancer community and I just feel that they are so, so very important. So thank you, Leslie. It is a vulnerable act to come on and speak about this journey. And I know you have a very unique one to share about. So thank you so much for being here. It means a lot to me.

L: You're welcome. Thank you as well.

K: Well, I wanted to ask you a little bit about your experience of discovering, without the medical professionals discovering, that you had breast cancer. And I know this was, not a typical way of discovering and I know that you're a spiritual person and I love to talk about spirituality on the podcast. So I'd love for you to tell the wild and crazy story of how you came to suspect that you had breast cancer.

L: Wow. Thank you. Because it's still a surprising story to me now, seven plus years later! I had gone for a mammogram like everyone else and I was called back, which wasn't surprising. I knew I had dense breasts. My sisters get called back. So they did a call back and they said, Oh, it's perfect. Everything's fine. And I got my piece of paper saying normal mammogram results. But then I had this experience that I, I don't know quite how to explain. Every day I'd go in the shower and this voice would come to me and say, “you have breast cancer… but on the right hand side” and it would, I would listen to it for the 15 minutes I was in the shower. I’d forget about it. And the next day would happen again. And then all of a sudden, five, six, seven days, I'm like, my goodness, the same thing is happening over and over again. I think you might need to listen! And having a scientific background, like you said, I had been an engineer originally.

I was looking for others to validate it. So I showed anyone who was willing to look at my breast. “Do you see anything? Is there any reason I should have breast cancer?” And everyone would look, I seemed like I, I was kind of crazy, like, no, there's nothing wrong. But I couldn't get the thought out of my head. It was so strong, the feeling, that I finally went to emergency, urgent care. And I don't know why I chose urgent care. I was just like, here I come. I got my courage up and I said, I have a normal mammogram. They called me back on my left hand side, but I think I have it on the right hand side. And the woman listened, the doctor listened and called me in for some extra testing, in which they did an ultrasound, they finally looked like they could see some cancer, but it was early stage, they said. So I left all happy, well, not happy, maybe relieved, right? Okay, thank goodness it's not metastatic. And then when I went to see a surgeon for my mastectomy, he said, “Oh, you're kind of swollen. Your lymph nodes don't seem good.” And then they did a breast MRI and some bone biopsies and found out I indeed was metastatic.

K: So why did they do the bone biopsies? Were you having pain already in your bones?

L: I was... so when they did the ultrasound, the funny thing is I'm like, “Oh, please brace my body.” I did have back pain. It had been the first time in my life ever. So I don't really know what that experience is like, but I wanted them to bolster my body. But you ask why did they do a bone biopsy--it’s because sometimes you have a different type of cancer in your body and they wanted to validate that. Yes, I have breast cancer and it’s what is in my bones. Because they saw it.

K: Oh, okay. It lit up on the MRI.

L:

Well, my chest lit up, so they knew it was other places, like in the ribs…. Oh, and then they did a PET scan, and they saw it was through the rest of the spinal system, but they needed to validate what they see on the PET scan and the MRI was indeed breast cancer, and so they strongly suspected it had traveled already when they did that bone biopsy. K: Okay. And then your, your journey took you to a few different oncologists just based on the fact that you had lobular—you were doing a lot of your own research and you were looking for a better and a better second and third opinion and eventually you found it. What was that like when you found your, your better oncologist that gave you the treatment that you're now working with? L:

Do you know there was such a sense of stress that I could feel in my body that I was constantly trying to put myself in some ways in medical school. I was trying to do online research and try to understand because I was aware that these well educated doctors, well meaning oncologists, didn't have the information they needed and I was concerned that I was not being cradled as much as I needed to be. I think they were doing everything they could and I think they were wonderful people. So I don't mean that as an insult against them, but they just don't know enough about lobular. And, the second oncologist, I mentioned to her, maybe I want to see this doctor up in Seattle who's a specialist. And she actually was wise enough to realize she didn't know enough. And she contacted the specialist up in Seattle and talked to her. And they talked about my case, and I went up to see her too. And the sense of needing to research every morning, these two hours of, “what do I need to know about breast cancer?” Poof. That that stress is gone. It feels really good to be in the hands of someone who knows. And also, there's a lot less fear because I had developed what is called the ESR1 mutation which tends to sound super scary and people say you have to be on this one drug and only this one drug, but you can't take another, it can't work in conjunction with another drug and it's overall survival is relatively small…. So I'm like, it doesn't sound so good. And this doctor that I'm seeing in Seattle had so much knowledge. She's like, “do you know what? I think we have other drug choices that will work for you. And I've seen this enough that even this ESR one mutation may revert back. Let's not get crazy about this.” And so there was a sense that she had from treating patients, from working in research that really, allowed me to feel a lot more peaceful.

K: How many years? Through your experience, did it take to find this, this new oncologist that you're working with now?

L: So I had spied her through some online conferences and I realized, Oh, that's a doable distance because Seattle from where we are here is maybe three and a half hours. I mean, not ideal, but it was, it was doable. It wasn't like getting in on an airplane and having to get there. But it wasn't until I had an oncologist who admitted she didn't know enough to really help me that I started the search. But getting in with this doctor was a long waiting process. Well, five, six months.

K: Oh, wow. Okay.

L: You know how every month you feel so vulnerable. You're like, Oh, what if I don't get my treatment. But I think also this doctor realizes lobular tends to move very slowly. And she had looked over my paperwork enough and seen it. And also I think she's that kind of a busy woman that I was really thankful to be able to get into with her on any basis.

K: And now you see her or her assistant monthly every other time, right?

L: I see, um, every, I can see them as often as I need is the truthful answer, but we've chosen every two months cycle. So two months for the physician assistant, then the next two months with her, et cetera.

K: Okay, so you've got a lot of access to her. How many years between your first oncologist and this oncologist that you've settled on?

L: My first oncologist which in itself was a gift—my brothers were both, my brother in laws were both in the medical field and they realized I was over my head. And they both, one works with medical equipment, in particular PET scans, and he knew where to put out his feelers. And the other one was very knowledgeable as well. I think they knew I was faltering. And they found my very first oncologist for me. They had contacted all their friends so my first oncologist was a fantastic match, really knowledgeable. But when he left to practice in another country, I needed to find another. And that lasted, that relationship was oh, I guess five years. It was a beautiful five years. And then my next oncologist was very new and loving and willing to admit when she didn't know enough, I needed more. And that lasted maybe eight months.

K: So you don't, it doesn't sound like you regret the first line of treatment that you underwent?

L: No. I was actually on a study drug then that is now very typical for women with metastatic lobular breast cancer

K: Which one? Was it a CDK4 6 inhibitor? L:

Yeah, I had Ribocyclib... or quisquali—it’s called either name. And then my hormone blocker was an aromatase inhibitor called Letrozole. K:

So it was the CDK4/6 that they were testing at that time because Letrozole was already on the market probably. L:

Yes, exactly, it was like, it was, I think it was the Mona Lisa study. K: Yeah. Were you super excited to get into that study?

L: I was super excited. But the realization of, gosh, this is such a fragile ground we're working on. Cause I remember there was a bunch of women in the study and suddenly there was just me. You only stayed on till progression. It made me realize how incredibly lucky I've been and how very indolent, personally, my cancer is. Mine is so slow growing. Certainly intelligent, but not as intelligent as others. So in other words, it doesn't mutate. K: Were the others on, did the others have lobular breast cancer as well or did they have ductal also?

L: By in large it was ductal. I was never let know how many people had lobular, and other people stopped it because people have problems with joint pain. There's a lot of joint pain issues, but, um, fortunately, that wasn't really a big problem for me.

K: And you mentioned “until progression.” So have you had an incidence of significant progression in your story?

L: Yeah, so, the thing about scans is they do a pretty good job, with glucose avid cancers in your bones. Um, but not all lobular is very glucose avid. So what you see on PET scans are the really hungry cancer cells who are consuming lots of sugar, but the ones that are a little bit more laid back and not eating sugar, they don't show up on the PET scans. so what ended up happening is I was getting back PET scans that said basically stable, but all I could tell you is I couldn't bend through my pelvis. And I think I felt like my breast was feeling different. It's, you know, it isn't something I can really tell you it was this problem and that problem. It was again, this, This internal feeling and um, she released me one from one appointment thinking I know big deal in the second appointment like nope It's just not right and I spoke up again at which point she did some blood work and they saw They did sorry a breast biopsy where they found the ESR1 mutation.

K: And that was an incidence of progression then.

L: Yes, I, when I then transferred care up to Seattle, I was given an FES scan and they did see that there was a lot more cancer in my pelvis beyond the glucose avid.

K: Right. The regular PET scan.

L: And I kept having this feeling like “I'm the Tin Man. Why can't I bend?” It was, you know, it wasn't, it wasn't quite painful at that point. But yeah, I felt like I was a Tin Man and always having exercised and move my body. I just, it wasn't right and I knew it.

K: So it sounds like you didn't have an FES PET scan until you went up to Seattle just a couple of years ago. Okay. Okay. Now I want you to tell the story of what happened when you went up to Seattle because it sounds like you got a very new insight on your disease and understood what you needed a little bit differently.

L: Oh my goodness. Yeah—between oncologist number two, the lovely woman who said “this is more than I know about.” She had a replacement show up. So I saw the replacement oncologist locally one time before going up to Seattle. that doctor said, emphatically, you must be on this med. And then we said, well, what if we don't just, oh, you're going to die. So I was really, um, rather convinced that I only had one choice. And when I went up to Seattle, she, uh, my oncologist there is such a calm human being she's like, no, I think we got a bunch of different choices here. Um, so she had me do some genetic testing and which I found out I carry a BRCA II mutation mosaic. Not germline, so I didn't inherit it, and it's not because it developed through cancer. It's something that developed when the zygote, when I was forming in my mommy. So it's a weird mutation which opened a whole—since she did the testing—that opens up a whole bunch of different drugs I can take in the future, some PARP inhibitors. Um, but really what she gave me After she did the FES scan, she goes, you know what, I think you're doing really well, you are I think I can, I think I can give you quite a few more years, but we never know, and I don't think you need to, you know, the, the development of this ESR1 mutation was like, um, was so horrifying and shocking. I thought it was an end point, but it really wasn't. And she was very calm about it. So I really, really appreciate that woman. I actually call her La Papess, Popess. Yes.

K: All right. So did you change your line of treatment when you went up to see Dr. Linden? Okay,

L: Yeah, so Dr. Linden said, um, good news. We're going to still keep you on a CDK4 inhibitor, a different one, which made me very happy. And we chose to do Fulvestrin, which is the butt injections, which aren't, in fairness, they aren't the most enjoyable thing. And the monthly, You know, you have to go and get them monthly. So unlike the pills, the pills I could do three months without seeing an oncologist, three to four months, which I really appreciated that. So yes, I'm up there every month, but they're working well for me. And I think as cancer goes on, I just become appreciative. I think I controlled life more. “Why can't I get these drugs for six months?” I don't want to look at anyone for six months. And then you go, okay, you go once a month. And now I make it kind of a fun date. Sometimes I go by myself, sometimes I go with my husband, but I take nice walks and I enjoy Seattle. I pretend I'm traveling. So yes.

K:

And did you stop taking the CDK4 6 inhibitor or the letrosol in the meantime?

L: So before she put me on a Palbocyclib, which is another CDK 4/6 Inhibitor, and Fulvestrant, yeah, she did stop for a period of time. And she said to me, “Breathe, relax, you'll be fine. It's a slow enough growing cancer. Nothing disastrous is going to happen in these few months, you'll be just fine.”

K: Okay. And did your bending at the waist issue go away then after? .

L: Well, I have new issues. Um, which may be collateral damage due to cancer treatment. But also I have, I have these cysts, these tarlov cysts that are pushing on my sacral nerves. So I have inflammation going on in my S1, S2 nerves. So movement through the pelvis is generally hard, but I do believe it is not related to cancer.

K: What is your daily energy level with the drugs that you're taking now?

L: Do you know, I don't feel that I'm really fatigued from cancer. What I do feel is because I guess to be more exact about how I feel, I feel like I have this perpetual sciatica feeling. So standing and walking are not pleasant. So if I sit all day long, I'm very happy. If I do a lot of bodily, you know, weight bearing exercise, I don't, body aches and says, please don't do this to me. Um, so sometimes I'll take something for the nerve pain in those cases, but I'm also learning like different ways of getting my exercise in. So instead of doing a standard upright class. I can tell you chair aerobics can get your heart rate up.

K: Good for you.

L: Well, right. Or incumbant bicycle. My pelvis is like that. I don't put any weight in my legs and I can get my heart rate up. So it's a learning process on my end, but I wouldn't probably go to a Zumba class for sure. No.

K: Yeah. I'm so glad that you're able to describe what it's like, um, because I encounter you to be an uninhibited. Co advocate. Like when I met you in person, I didn't notice that you were terribly uncomfortable. You were able to be very energetic and animated. And it's just, it's interesting to me to think about, um, the way I used to see metastatic patients and the way I see metastatic patients now, there's very little difference in terms of your presentation and your ability to get out in the world, drive around, do things. You're very functional, and I think that's partly because, like you said, you had a very slow growing and probably somewhat indolent cancer, like sometimes it probably has completely stopped growing. Do you feel like that's the case?

L: Yes, yeah, yeah. I had a few years of scans where there was nothing going on. Exactly.

K: Okay. And how anxious do you get when you get up to those scans nowadays, after all these years of living with the on again off again, do you ever have intense anxiety or is it a much easier journey?

L: Do you know, I don't know that the PET scans caused me any anxiety. There's a sense of You're just gonna deal with whatever comes up You're gonna process and go through so I don't think that causes me anxiety. I think sometimes Um, I don't keep my balance well, and I let myself get, get swayed by other people. I, I'm more anxious when I don't have my center. know, you'll have other people say, Oh, they can't see this. They can't see this. I'm going to do this kind of biopsy, that kind of biopsy, and those kinds of things are very stressful for me. I think for another person, that knowledge may be beautiful, but this whole idea of what they don't see, and what's it doing to me, is something that I, as long as I say. Let's separate those two things. Living with uncertainty is just something you learn how to do, and you need to learn how to do better every year. I have to just say, yeah, it's uncertain. Yes, that's true.

K: And when I met you close to a year ago, was that your first step into the advocacy space?

L: Yes. I think I just had a really hard time with that one. Healing myself enough before I felt like I could take on others. I, you know, I don't know what other women go through, partially because, um, sometimes other people's stories are hard for me to listen to. I, until I'm strong enough, I can only take in little pieces at a time, I guess is what I was saying to you. um, it took me a good six years before I'm like, Oh, I have the strengths to do this. I'm grounded enough to do this. Maybe I could have done it sooner, but no, I think I needed that, I needed a lot of, uh, spiritual, I needed a lot of spiritual healing before, beforehand. I just couldn't do it otherwise.

K: And what did that look like? The spiritual healing?

L: Ugh, you know, I think I had to learn the purpose of pain, and I'm not just talking physical pain. I found everything people were saying in me was rubbing against me. You know, like you'd say, Oh, I'm sad because, you know, I'm not going to see my sons get married, maybe. And someone would say, Well, you don't know that. Or you'd say, Oh, you know, I don't feel comfortable knowing that I'm going to die sooner than I thought. Well, we're all going to die, would be the response. there were just a lot of responses. that were hard for me to process. But I realized there's just a whole lot of people who are in pain, they can't take on extra pain. There's a group of people who, when they look at you with pain, immediately think, oh, that's bad. You can't feel that way. Why do you keep doing that to yourself? Why do you keep adding pain to your life? You go, and I would then feel bad about myself for doing that. And then there's people who met well, but it didn't land right. You go, Oh, don't say that to me, but in the end, what I learned is I think pain for me has served a really valuable purpose in terms of showing me how much more empathy and I need in this world, how much more empathy is needed in general, um, myself with myself, with others. Um, and I appreciate the pain now. And I listened to, I say, “Leslie, it's okay. You feel sad about that.” And I'll repeat what I'm pained about because I find other people aren't always able to do that. it's me being able to say that this hurts. I didn't want it this way. That allows me to then get beyond the pain. And see things in a more beautiful light. But if I can't listen to my pain, I get stuck in it. Yeah, pain has served a purpose for growing empathy, understanding the world and seeing the beauty because you can't see beauty if everything's always sunny and rosy, at least that's how I feel about it.

K: Yeah. And you're now a part of a metastatic support group where you can do that for others to now. Did that take a long time to find?

L: No, you know, I was how you want to be an advocate. Is it, as you know, yeah, because there's different forms that actually even listened to a whole podcast on calling. I have a science background, but like, I don't feel very drawn to reading research articles. I can read them. I just, that isn't, My cup of tea, right? I just saw an email that came out from Lori from the LBCA said, anyone interested in doing this? I'm like, damn, yes, it just felt right when it came my way, I'm like, that's something I can do. I don't have to travel anywhere to do it.

K: What was it? L:

So it was the, the SHARE Cancer Group. The National SHARE Cancer Group was looking for women to support lobular cancer—women with metastatic breast cancer. And they just needed two facilitators and I just clicked yes without thinking a lot about it. I just knew my stomach said, yep, it feels right. And so that's what I've been doing. the group is new. So the training took a bit of time and then the group took a bit of time before we found a slot, but we've been in session since September. K: And are you, you're actually facilitating one of those groups? How has that been for you?

L: Um, you know, at first I thought it would, I was wondering, would I feel pain? Listening to other people's stories. Was I scared of how it would rub against me? I know it feels like this is a group of women where we all know what we've been through and we can talk together about our experiences. A lot of the women are newly diagnosed and you realize that's a hugely vulnerable group. There's not a lot of people in there that have cancer, have had cancer for a long time. Or like, yep, um, it's meaningful. I think when I had to quit teaching, I realized how much I'd loved my job and how much purpose it gave me and how I felt like I was helping others and also having a good time myself. I really, really love teaching, um, and I'm really happy to have found something. that maybe is similar. It gives me this as a purpose. I say similar, I don't know yet because it's still, it's still in the infancy.

K: Yeah. Are they mostly younger women, younger than you?

L: No, but there are women with young children. Um, so I'd say 45 to 65, maybe 70 is the, is the range, but currently it's a very small group of women and they're really just hungry, um, For information, because like you were asking me in the beginning, what did you need? You need someone, an oncologist who you feel good about, who knows enough that you can kind of go, (exhale)

K: Did you have a support group of your own prior to this new one that's going on through Share?

L: All the questions I need to fess up to. I did, Kathleen, but I found, I tried two different groups, and I just found they were so not the match for me. Um, one group I found there was this overwhelming gloom and doom feeling, which was probably very fair, but it didn't feel right for me. And then this other group, there was this need to turn everything into the best thing in the world. And that was scary, I think you do learn from cancer, but I think the learning happens after you acknowledge the pain. And the group was more like, “don't say that. That's bad. That's painful. Turn on the happy face.” It was like, you just had to have an on switch to happiness. And that just didn't feel right. So I think honestly, that's what the facilitator felt was best for the group. I thought that was a genuine expression of what she believed. K:

Yeah. I find that most of the support groups I've been to are a reflection of how much the facilitator can take. Like, it only goes as deep as the facilitator is able to let it go. So I'm so glad they have you because you are allowing that to go deep. Is it mostly de novo patients that you're working with in this group?

L: Do you know, the answer would be no, but there's a surprising number of de novo patients. I'm shocked. So in this group of 10, both the facilitators, both me and my co-facilitator were both de novo and in the last group, we had two other women that were de novo. And I think that's just related to how hard imaging is to detect this disease.

K: So true. I'm going to go through this a little more in my, in next week's episode and reflecting on some of the terms that you and I are talking about, but just for the sake of the brand new listener who doesn't know what de novo means, it just means you're coming into breast cancer for the first time with stage four uncurable metastatic disease. And most times, most people don't realize this, but most times de novo patients don't have to lose their breasts. Did you have to lose your breasts?

L: No, I did not, though I think some people are thinking maybe that's the right thing to do now, but you know how the cycle of things, it's always a long cycle. No, when I first got diagnosed, they say no mastectomies for de novo.

K: I think it is still true that that's the standard of care. Did that make you uncomfortable? Did that weird you out that you didn't have to lose your breasts even though there were cancer cells in there?

L: Initially, no, just because I had so many things I was processing, it's like, I just didn't feel like I could take on another thing. The sense of being overwhelmed, um, was pretty large. But now I'm debating, oh, if I can, if I can manage a longer time with this disease and this helps. I would definitely debate it.

K: Do you think there would be a little bit less anxiety somehow or what would, what would the result of, of doing that be?

L: Good question, Kathleen. Yes, maybe a little less anxiety, but you know what? I also have to realize cancer will have cancer's way and I am personally not in a battle trying to outsmart it at every step. doing the best I can. It does what it's doing. And we're living together. I can't worry. I can't worry too much. I do, I make all the choices I can for myself. And some are right. Often they're right. And sometimes they're not. But this is just what, this is just the process. I mean, cancer is a, is a, is a, uh, It's an amazingly smart disease in some ways. know, when you hear about the mutations women develop, What they, the drug they use to block the cancer could then be used to feed the cancer. You go, Oh my goodness, it's smart. So I'm just trying to say, I'm giving myself slack because you can only do so much and worry about so much. And I think my health is best when I say you're doing what you can see your beauty, see your value, see the beauty in this world. And that's good enough. It's a lot.

K: Yeah. Talk a little bit more about your relationship to beauty these days?

L: Um, I think the simple aspect of some days are so hard to walk and then I take one of these magical pain pills, and I don't mean anything severely stronger I think, but just something that helps with the nerve pain and then I can walk again and like my body moves like this. Isn't it beautiful to walk? And I'm noticing that all of a sudden I can take—oh, those are lovely flowers. Oh, look at that house. Isn't that beautiful? Um, I think cancer just has slowed me down enough that instead of seeing what's ugly, because there's plenty of ugly things, to look at with cancer, I'm looking for what is beautiful, and I'm trying to create more beauty around me. be it as simple as decorating, or in words, in kindness to other people. Um, I just, I don't know, beauty really calls, is a healing force for me. It calls me.

K: I didn't tell you I was going to ask this question so you can turn it down if it makes you uncomfortable. But I know you're a spiritual person, you're a person of faith, and I'm assuming your family shares some of that with you. Does that make it easier to talk about the end and what you would like to have set up for yourself?

L: Kathleen, I wish that were true. You know, my boys are young and they're not young, young, but you know, they're struggling to find their own ways. And, I think what ends up happening as a family is we all learn together how to better support each other and embrace pain. So I think it's a spiritual journey that we're all put on, but I don't think it's made it easier. I know they would be sad and they'd say something like, um, like the ringing of the bell after radiation, they go, “do you want to ring the bell to celebrate your end of cancer?” And you're like, no, I don't. And it hurts. I would go home and talk to my one son about that. And he'd say, Oh, but you need to understand some people need to celebrate. Okay. And finally I had to say to him, “I have this understanding and want to celebrate. I just need my pain heard first.” And it's funny. It was maybe six months in which we were kind of at each other a little bit like that. But in the end, um, his ability to listen to pain, mine and others, and to ask the questions that people need to dare to ask to find out what's going on in someone's life—to just say whatever comes out is okay. You don't need to convince someone why you shouldn't feel pain, why this isn't right, another perspective. It just is. And to see him handle that so, um, gracefully at such a young age, well, a young adult age, I think is really beautiful. So I'm very thankful for that.

K: Do you have a bucket list?

L: A bucket list. Um, no, I don't. No, just, just filling, filling things up in my life with beauty. I think French. is maybe my bucket list. I can't explain my relationship to French. I study French because it brings me joy. There's an ability to communicate in another language that doesn't exist in English for me. And I do it, not that I'm good at it, not that I'll I may never get near fluency, but it just feels good. So I think my bucket list kind of consists of these things. Making sure I'm finding beauty while embracing pain and things that feel good. And friendship is one of those things. My family, laughing with friends, a good glass of wine. Those are all beautiful things.

K: Yeah. How about an advocacy bucket list? Is there anything you really want to accomplish as an advocate?

L: Yeah. So having never had had mammograms find my breast cancer. I think what I would really. to do is work on finding better screening for women and maybe taking some of the veil off the perfection of mammograms. I think mammograms are highly important and will continue to serve A very valuable purpose, but until enough women say because they have dense breast or because they have lobular breast cancer, that these tools aren't working for them, we don't have enough agents of change working on the status quo because, you know, we have a lot of money invested in mammograms and a lot of training, but we really do need, um, better screening.

K: Amen. Yeah. Yeah. I feel like that's what I hear over and over from other lobular advocates. It feels like a cruel trick, you know, that this thing that is so held up among other women and in the breast cancer community at large has really swindled us that it really deceived us. And, um, we're only a small percent, 15 percent of that population, but so we don't the loudest voice or shouldn't have maybe the biggest say, but it still feels really, really tricky. L: Yeah, and I don't think you have to say mammograms are bad because they're not. They're great if you have fatty breasts, they're great, well maybe very good if you have ductal cancer. So they serve a lot of purposes, but they're not serving us all, and that's a true statement.

K: Yeah. How do you feel about the advent of FES PET? Are you a huge fan? Do you shout about it from the rooftops or?

L: You know, I think FES PET is great in that it can show you your hormone receptor status , throughout all these parts in your body that can't get biopsied easily. Where lobular breast cancer still really needs a, a scanning device is in the, in the gastrointestinal area. An FES PET does not help in that. So it's, it's a helpful tool for its purpose, but we still need some more, more tools.

K: Well, I hope you'll come with me to San Antonio and speak about that to the scientists that are interested in hearing from you. Especially you should have a pretty loud voice in that context.

L: Thank you, Kathleen.

K: Yeah. Is there anything else that you'd like to share with other patients, whether they have lobular or not? Um, just something that you would have liked to have known early on going into a, a de novo diagnosis.

L: Um, no, I think we covered it. It's just a hard phase and be gentle with yourself. It's hard. And for me, it took years.

K: Yeah. Would you encourage folks to just keep trying support groups like rapid fire? If the first and second one don't work out, would you say that that's something you would do differently?

L: You know, no, I, I had to spend a lot of time understanding why certain things hurt me I felt breast cancer was a graded report card. You know how like she beat breast cancer or cancer could have kicked her in the butt, but she was resilient. You see this kind of messaging, which for someone who is going to die of breast cancer, I felt like I was failing in that report card. I wasn't strong enough. I wasn't meeting those things. And I never realized it was a report card until I had breast cancer. But so to answer your question I needed to spend six years to see my own value and my own merit. I had to separate from those messages. I think support groups could be great for another person. I just, I had a lot of weakness that I had to work on. A lot of “owies,” maybe not weakness. I had owies I had to work on until they were worked on. Support groups just hurt.

K: Yeah. There's a lot of toxic language. In our community. And we need to work on that for sure. There's a lot of shame in our community that is unspoken. And when you go into a support group and that shame is unspoken, it almost reinforces the shame, right?

L: Yes.

K: I feel the same way. Yeah. My first support group was the same. It didn't go deep enough for me to feel like I was getting some healing. And. Yet for me, I didn't need to withdraw in order to work on that and get rid of the shame. I just needed to find a different group of humans that could admit that they had shame and that it was a lie. So that's interesting. We all get there somehow. We can either get there on our own or with others, but as long as we keep working on the shame and dismantling it, I think that's the main thing.

L: Yeah. And thank you for bringing up the shame because yes, there is a whole lot of shame that takes a lot of effort to work past that or work with it. Yeah.

K: Yeah. Well, thank you, Leslie. I'm so glad that you came and told your story and let these things be known about you. It is, it is so refreshing for me. To hear more about your story, and I look forward to hearing more and more and hearing how it goes with future treatments. You, you're always a bright source of light and hope in our community. And I just feel like, like you said, that is, is rare in the metastatic realm. Sometimes you get doom and gloom, but you are not, you're anything but doom and gloom.

L: Kathleen. I really appreciate it. Thank you for listening. I appreciate it very much.

K: Yeah. I'll see you in a few days at our next meeting.

L: Okay, bye.