Journey of tackling Stage 3b Inflammatory Breast Cancer with a Newborn

In this powerful episode, Terry Arnold sits down with Ashley Kinni as she shares her deeply personal story of becoming a first-time mom at 32—only to be diagnosed with Stage 3b Inflammatory Breast Cancer just one week later. Ashley opens up about the challenges of navigating new motherhood while undergoing chemotherapy, radiation, surgery, and ongoing post-surgical treatments. Her journey is still unfolding, but her resilience shines through: thankful for yesterday, grateful for today, and hopeful for tomorrow. 

Ashley Kinni, is a mother, wife, and pediatric speech language pathologist. A lover of cooking, cycling, and spending time with family.

Transcript

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Terry Arnold: Hi! I'm Terry Arnold with the Ibc Network Foundation. Welcome to talk, Ibc. And I'm so so happy to have Ashley Kenny with me today she lives up in New Jersey, and she is one of our Ibc sisters, and she wants to tell you about her story. Unfortunately, of being diagnosed with inflammatory breast cancer, but also share some education and some hope. Thank you, Ashley, for being here today.

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Ashley Kinni: Thank you, Terry, for having me. I'm so excited to discuss my journey. And yeah, I can't wait to chat.

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Terry Arnold: It's a weird thing to think you'd be happy to talk about this, but you're in a good place right now.

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Terry Arnold: and I know you said, your focus is, you really want women to know about this unusual cancer, and also that you can get cancer when you're pregnant. Now, I know you told me you're a speech pathologist. Of course I bundled that since the word speech and that kind of puts you in a medical world. But that doesn't mean, you know all things.

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Ashley Kinni: No, no.

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Terry Arnold: About your background and what happened and how we got here today.

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Ashley Kinni: Sure, sure. So I think it's important to say a little background before I go into my actual cancer journey. I was living in New York City with my husband. For I think.

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Ashley Kinni: 5 years, and working both of us working. And then we decided we wanted to start trying to have a family. And during the pandemic, actually, I had 2 miscarriages, and it was really upsetting and obviously very difficult, especially during Covid, because I had to do some things that

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Ashley Kinni: if it was today I probably wouldn't have to do, but because the hospitals were overrun and in New York City was epicenter of Covid. You know it was. It was a very scary time, and so.

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Terry Arnold: Interrupt real quick and say, I'm sorry you had some miscarriages, because I've suffered that, too, and it's awful. But also

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Terry Arnold: I'm sure it was very difficult, but there's a very loneliness about what happened to you, but so so I'm glad that you got to finally have a baby. But continue on.

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Ashley Kinni: Yeah, thank you. It was. It was a. It was a weird, weird time. We were like walking to all of my appointments like a mile each way, because, like, we didn't want to take the subway because of Covid. And you didn't really take taxis at the time. So it was. It was a weird time especially living in New York City. So

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Ashley Kinni: after the miscarriages I really like focused on getting really healthy, I ran my 1st half Marathon. I really stopped drinking, and I was really focused on getting pregnant. That was like my main focus. And my doctor, my ob at the time, was like, I'm going to give you one more shot, and then we're going to go down like some fertility routes.

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Ashley Kinni: And so we tried. I was in the best shape of my life.

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Ashley Kinni: and so healthy, and I I got pregnant, and it stuck, and we were so excited and so happy, and I was very

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Ashley Kinni: cautious because I had 2 miscarriages, so it was very aware of, like what I was putting in my body and exercising. And so everything was going great, and then, when I was 8 months pregnant, I noticed that I developed the orange peel on my left breast, and my nipple started to become inverted.

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Ashley Kinni: and it was my breast was just really hot. It was like.

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Terry Arnold: Did it swell much? Was it bigger in size than the other breast?

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Ashley Kinni: Yes, it was huge, it was huge, it was really large. And

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Ashley Kinni: that crazy. How fast that can happen! It's like an attack

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Ashley Kinni: it was, it was, and I was really confused as a 1st time mom and I showed friends, family, and everyone was just like, Well, you're 8 months pregnant. You're about to give birth.

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Ashley Kinni: you know. It's probably breast milk, related. Your milk's coming in, so I didn't think much of it.

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Ashley Kinni: and that around the same time I actually developed hypertension, and it was like my body was

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Ashley Kinni: freaking out like there was something wrong in hindsight, and they couldn't figure out why I developed hypertension at 8 months pregnant. Usually you develop it earlier on. So it was really strange they did all these tests, but they never checked my breasts, and I had one breast exam. My entire pregnancy, which I think is something that for anyone that's going through pregnancy really to push

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Ashley Kinni: for breast exams throughout the pregnancy.

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Terry Arnold: I want to interrupt you with that about one thing, because, you know, I grew up in a world where

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Terry Arnold: you always go to your obgyn for anything female related, they called it.

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Terry Arnold: and no disrespect to obgyns, but I honestly believe that they're all about downstairs. They don't do a lot about upstairs.

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Terry Arnold: and there needs to be more education

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Terry Arnold: about breast health. And also there needs to be education that cancer doesn't care if you're pregnant. This should be this beautiful, happy little time in your life where you're this little bubble, and nothing goes wrong.

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Ashley Kinni: Yeah, but it doesn't care.

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Ashley Kinni: it does not care. And I was in a bubble. I was so happy. And I was. You know, I was like, there's nothing wrong. And so I developed hypertension, and I was finally induced at 38 weeks.

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Ashley Kinni: and the birth went well. Everything was great. Best day of my life gave birth to my son, very healthy. We're in heaven, and the next day I was in my my room. Recovery room with my husband and one of the nurses came in.

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Ashley Kinni: and I really wanted to breastfeed I like watched all these tutorials and videos. And before the baby came. I really really wanted to breastfeed. That was like a big goal of mine, and my son, for some reason like, would not take from my left side my affected side at the time, and it was just weird that he like knew that it wasn't, you know, a good breast to go for. And the nurse.

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Ashley Kinni: This was literally the day after I gave birth was like, How long have you had that rash for? And you know I told her like 2 months, and she was like, Okay, and I could tell she was alarmed. And you know she immediately got the doctor. I think it's also important to know like that, Doc. That nurse probably saved my life.

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Terry Arnold: Gonna say, and I find that nurses are often the ones who pull the trigger on. Hey? Something's up here because they see so much.

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Ashley Kinni: Yeah, I mean again. No one was checking my breast so that nurse saw and got my doctor, and I remember even joking to her with her about like, oh, well, it can't be cancer, right, you know, and I I don't know why I said it, but I did, because I think I saw the look on her face, and she looked scared. She looked scared and

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Ashley Kinni: so I then got a emergency mammogram and sonogram the next day, and I also like went into panic because my son developed jaundice on the second day, and I thought that was like the end of the world.

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Ashley Kinni: which is not. It's very common. But I all of my.

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Terry Arnold: Your mom and your emotions are all over the map, and they're making you jump through all these extra hoops.

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Ashley Kinni: Yeah. And so like, my focus was purely on him and him being the Nicu under the light. And so I wasn't even really taking this whole.

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Ashley Kinni: whatever this was about a mammogram like I wasn't taking it seriously. And then the next day they kept me in the hospital, and the next day I went for the mammogram, and I was devastated because with the mammogram, like all of the milk, came out, and it was just dripping down. I remember just crying. I was like, Oh, my gosh! Like that's wasted milk like, what are we doing? Why are we doing this like this is stupid. Why.

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Ashley Kinni: I'm fine and and it was devastating. It was devastating. I'll never forget that. And then they do. The sonogram and the radiologist came in, and she was like.

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Ashley Kinni: look, it's either mastitis or which is an infection, or it's cancer. And I was like, well, it has to be an infection. And

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Ashley Kinni: you know, she was like, well, we've got to do a biopsy like you want to do it next week tomorrow, I was like, well, let's do it right now, and God bless her! She did it. She did it like right then and there, and

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Ashley Kinni: she she did several biopsies, and I later found out after the biopsies. She walked out. My husband was waiting for me. Our son was in the Nicu. My husband was waiting, and she looked at him, and she goes. It's cancer. Like she knew she didn't even have to do the pathology report. She she knew, and he didn't tell me at the time, you know which

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Ashley Kinni: it was a lot for him to carry as a 1st time, Dad. And you know his wife

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Ashley Kinni: has cancer, and that was, you know.

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Ashley Kinni: it was devastating, it was devastating. And then I found out.

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Ashley Kinni: 6 days officially after I gave birth, that I was it was malignant and

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Terry Arnold: Say malignant. So it was stage 4 from the beginning.

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Ashley Kinni: 3 stage 3. I'm sorry.

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Terry Arnold: So you say, malignant. You meant as malignant with cancer. Okay? I thought you said metastatic. Okay? Oh, you said malignant.

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Ashley Kinni: Okay. Yeah.

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Terry Arnold: So it was cancer. But you were still stage 3.

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Ashley Kinni: Yes. Yeah. Stage.

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Terry Arnold: A lucky thing.

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Ashley Kinni: I know, I know, I know.

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Terry Arnold: Because I, the difference of a stage 3 and Stage 4 can be really tough. They try to go for curative before, but still so often we find that with the younger ones.

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Terry Arnold: are diagnosed at Stage 4 for various reasons, and also young women are doing what young women do. They're having babies, and sometimes the pregnancy just like with you masked what was happening causing further delay. And also there's a huge hormone dump.

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Ashley Kinni: Yeah, yeah, yeah.

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Terry Arnold: And pregnancy.

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Ashley Kinni: Yeah. So I was diagnosed with triple positive. So my hormones were

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Ashley Kinni: out of control. And her 2 positive so yeah. And they told me they confirmed it with a punch biopsy that it was inflammatory and they told me that they thought it was pregnancy induced, and so I learned what inflammatory breast cancer was for the 1st time, and that you can get pregnant or you can get cancer while you're pregnant. All like, within a week I was like, this is.

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Terry Arnold: Lot.

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Ashley Kinni: This is crazy. I didn't even know that this was a thing like all of my family and friends were in disbelief, like we were all devastated. You know the beginning is the scariest part, as you know, like the unknown, you know, and

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Ashley Kinni: I went for the scans, and I lit up because I had just given birth a week before, and so, like my pelvic area was, you know, inflamed. So we had to do all this imaging, and then same with my liver

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Ashley Kinni: Which they ended up being like hemogenomas, the benign. They're like benign little tumors, hemogenomas. I think that's what they're called, but they're like benign tumors from pregnancy and birth control. But they were like monitoring me, that monitoring me for that. So like it was a very

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Ashley Kinni: scary, because I could have been Stage 4 very easily. So that was really a scary time. And then I also switched hospitals to which that to get a second opinion. Which that was like a whole thing in itself. I don't know if you had to do that, but, like.

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Terry Arnold: There's a fight.

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Ashley Kinni: Yeah, the records and the imaging and all of that. So that was a whole thing.

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Terry Arnold: One thing, it was hard for me, and I think about you young ones sometimes. You know you haven't had much experience with doctors, or you know, or you've never had to like advocate for something. I had an experience with one of my children was very ill when he was only 18 months old, so I had kind of learned to navigate the system, but when I was going through my own I was misdiagnosed. I was the opposite of you. I was misdiagnosed for 4 months.

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Terry Arnold: so it wasn't quick, but also I was blown off, and then when I got my diagnosis, I thought, this is great. At least somebody knows what I have.

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Terry Arnold: But I told her I want to go to Md. Anderson because she told me that I live lived in use at the time, Major Center, near NASA, and I told her, well, I want to go there

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Terry Arnold: to talk to them, because she just told me that she wasn't gonna try to save me, she said. It's too far gone. And I'm like, Wait. This doesn't make sense of to go from nothing to when I'm gonna try to save you just seem pretty brutal. And I really thought

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Terry Arnold: because by 4 months I felt awful. I thought, Yeah, I'm probably going to die, and I wanted to see if I could be part of a study, or to help or do anything, and she got mad at me, and she told me, if you go there, don't ever come back. And I thought, Well, crap! Now, what do I do? You're the 1st person anyone I had.

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Terry Arnold: And you're telling me if I go to the most renowned cancer center in the world.

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Terry Arnold: I can't come back, and I left

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Terry Arnold: not with my knees knocking. I was so mad.

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Ashley Kinni: Yeah.

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Terry Arnold: Then I thought, Well, you have my best intention at heart, and I've seen people get great local care, and I've seen people not get the best care sometimes a big centers. So what was it like for you? Once you got to a major center? Do they know what you had.

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Ashley Kinni: Yeah. Yeah. So I was. I mean, I was still at a major center. I was New York Presbyterian, Columbia. That's where I gave birth, and that's where they diagnosed me. But I ended up at Memorial, Sloan Kettering, because it's memorial. Sloan Kettering.

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Terry Arnold: Know I get it.

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Ashley Kinni: Yeah, so and like, you know, my Ob was like

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Ashley Kinni: Ashley, like, you should go to Sloan because they specialize like they specialize in cancer, and they're familiar with rare forms of breast cancer. So I made I made the switch. It was strange because I felt guilty. Leaving my team at New York Presbyterian.

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Ashley Kinni: But you know I'm happy. I did make the switch, but it was a lot of work. It was a lot of work switching hospitals. And then I met with my new oncologist. And yeah, she has a lot of experience with inflammatory, so I felt very comfortable and very. You know I was happy with. You know how they were treating me.

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Terry Arnold: Say something about that.

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Ashley Kinni: Beautiful.

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Terry Arnold: Because when you said you felt guilty, you know, it's interesting. I talked to a lot of women who say they find it very hard to switch doctors.

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Terry Arnold: They're really worried about offending someone.

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Terry Arnold: It also, if you've had this good experience with, you, know them birthing your babies and all this wonderful things sometimes makes it feel disloyal.

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Ashley Kinni: Yeah.

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Terry Arnold: But I always tell women if you ever get your kitchen remodeled.

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Terry Arnold: you're not going to hire the 1st contractor.

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Ashley Kinni: Yeah.

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Terry Arnold: You could get 3 or 4 bits, and I always say, kind of think about that way. I think women have a hard time putting themselves on the head of the line. I heard a little bit of that. When my baby's got jealous I focused on that. I understand. As a new mom, I would be doing the same thing. It's hard, though.

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Terry Arnold: to not feel guilty when you're just trying to do the right thing.

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Ashley Kinni: Yeah.

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Terry Arnold: In getting to a specialty center

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Terry Arnold: is good for not only you, but it also helps them understand the science. Better, get more samples for their studies, get more people in their clinical trials. I mean, those things are all really important, and I'm laughing. Listen. You have a daughter who lives in New York. She had her babies at the same hospital.

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Ashley Kinni: Oh, yeah.

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Terry Arnold: Monitor. She's Brca positive, and she's never had cancer and hope she never will. But it turns out, even though I have no family history. I'm brca positive.

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Terry Arnold: and out of my 5 children I have 3 daughters, and I know boys can carry the gene, too, but one of my 3 daughters is positive.

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Ashley Kinni: Wow!

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Terry Arnold: And so she's being monitored at.

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Terry Arnold: I think it's a Sloan. I need to double check, but she goes every 6 months, so I know all the paths you're I'm I know all the past you're talking about.

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Ashley Kinni: Yeah. Yeah. And I mean, I feel honestly very lucky that I was given the opportunity to go to these great hospitals, because I know there's a lot of women that don't have access to hospitals, like, you know Sloan Cuttering or Md. Anderson, and or have to travel, you know a lot. And I, you know, it was basically in my backyard. So I was very fortunate.

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Terry Arnold: When did you start treatment? How soon after? And what was your protocol.

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Ashley Kinni: Yeah. So I started on January

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Ashley Kinni: January 18th of 2022. So that was a month after I gave birth to my son. So I was like.

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Ashley Kinni: you know, in the thick of it, trying to figure out how to be a mom, you know. And I had like 4 weeks before I started chemo. So I was breastfeeding using one breast and I was pumping like crazy because I really really wanted to breastfeed. And I think that's something that I'll forever grieve is I didn't have the opportunity to like breastfeed, for.

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Ashley Kinni: you know ample amount of time. I'm happy. I got like 4 weeks, but I wish you know I had longer but yeah, and then.

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Terry Arnold: Quick, because this was your 1st baby. Did they talk to you about harvesting eggs, or any of those things?

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Ashley Kinni: Yeah. So they told me, no.

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Terry Arnold: That's not too personal.

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Ashley Kinni: Oh, no, no, no, no! And that's something I'm definitely still grieving. They so New York Presbyterian said I could Sloan was like. We don't recommend it because you just had a baby. You're hormone positive. You have inflammatory breast cancer like you could be stage 4 like. That's how quickly. You know, the cancer can.

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Terry Arnold: You have to wait longer for that process. And so I'm glad you said that because I've known women who were told by their local doctors. Let's harvest some eggs, and I have great sympathy to women who have not been able to have children. I'm very fortunate I had 5, but sometimes people don't realize it wasn't as easy as it sounds, and I've miscarried 2 and and then

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Terry Arnold: But to delay for that purpose can be incredibly dangerous.

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Ashley Kinni: Yeah, yeah.

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Terry Arnold: And incredibly dangerous, and so I'm glad you got some good advice. And again, you know, I am sorry for that portion of your life. I'm grateful for what you've got, and I know used to be. If someone had a cancer history young, they wouldn't let you adopt, and I have several friends who have. And also it's interesting enough. I have friends who've gotten pregnant accidentally, post treatment. Naturally.

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Ashley Kinni: Wow!

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Terry Arnold: So.

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Ashley Kinni: Yeah.

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Terry Arnold: I don't know what.

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Ashley Kinni: No.

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Terry Arnold: Going to happen yet.

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Ashley Kinni: No, no, but you know my my oncologist was very honest with me, and she's like you have a son, and you need to be here, and you want to be here for him. So let's

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Ashley Kinni: do what we need to do to get rid of. You know the cancer first, st and you know I she didn't really give me a choice, and but I know I made the right decision. It's a it was a very hard like. I'm getting emotional, just thinking about it right now, like, I really wish I could have. But

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Ashley Kinni: you know, who who knows what could have happened? Because it takes a couple weeks, you know, and and there was a chance, too, that like it wasn't gonna work either, like I just had a baby like. And I had a hard time getting pregnant like, so yeah, we didn't do that.

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Terry Arnold: Lot of factors. But you started. So when you start a treatment.

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Terry Arnold: Baby was a month old. Yeah. And so what happened? You started Chemo first.st

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Ashley Kinni: Yeah, I did. Chemo. First, st I did A/C 4 rounds of that. I lost my hair. That was really tough. I didn't cold cap. You know it's expensive, and you have to be there 30 min before chemo 90 min after chemo, and that was time away from my son. So I was like, I'll just.

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Ashley Kinni: you know, lose it. And I did. And that was that was tough and but I did fairly well. Actually, I did fairly well with A/C and then I did taxel. I did 12 rounds of taxol with HP.

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Ashley Kinni: Perceptin and progetta. So I did 16 rounds. And honestly, I felt taxol was more challenging because it was every week, and it was emotionally draining, you know, with A/C. It was like every other week, and I had a little break but taxol. It was just emotionally exhausting. And then I lost my eyebrows and my eyelashes, and I didn't really know that was going to happen. And that's when I looked really sick. And that was scary. That was really.

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Terry Arnold: It's weird for me that I realized I got really puffy. I gained a lot of weight in treatment, and they gave me tons of steroids back. They do things differently now. I'm not saying it's not brutal now, but you know, back in my day you had a pet scan every time you walked into the building. They gave you tons of steroids and all that stuff really wreaks havoc on your body, but also I had cancer, both my breasts. I had 2 separate primaries. It was just nuts

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Terry Arnold: and Ivc ironically saved my life. We wouldn't have known about the cancer in the other breast. In time

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Terry Arnold: I had a triple negative tumor. My other breast had been growing and wasn't showing up any mammograms. It was deep in my body, and I asked them when they found it, what would have happened if I hadn't gone through all these exams for inflammatory? They said you'd woke up coughing one day, and it had been your lungs.

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Terry Arnold: cause it was moving fast. It was deep.

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Ashley Kinni: Oh, wow!

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Terry Arnold: And it just wasn't showing up. So I have an odd story that way. But

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Terry Arnold: but like for me, the fatigue just I had A/C and taxon, too, and each week I was just a little more tired and a little more green and a little more puffy.

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Ashley Kinni: It. It compounds for sure, like.

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Terry Arnold: It just was compounded. And so and I'm a high energy person. I was napping

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Terry Arnold: every minute I could. So here you are with a brand new baby.

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Ashley Kinni: Yeah, yeah, yeah.

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Terry Arnold: Doesn't care either. It wants what no.

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Ashley Kinni: Oh, yeah, and you know, we were very fortunate. We had a lot of family help. You know my parents are retired. So they were able to help a lot. And then my mother-in-law came up a lot. So we were like, really

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Ashley Kinni: lucky to have such great support. And then a lot of my friends came up, and my friends in the city went to Chemo with me like, you know, my husband's job was so great, and gave him time off every Tuesday to go with me. So like that was great. But it was really difficult with a newborn, and I was trying to be present, but sometimes, like

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Ashley Kinni: I needed to go lay down like I was really really tired. And I just I just was kind of like in a daze. You know it was. It was yeah a while.

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Terry Arnold: Like you ever seen that Charlie Brown, commercial or cartoon, and it's like womp womp. There were times, all I heard was womp womp. And it was interesting, looking back, that

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Terry Arnold: people didn't know that I wasn't understanding what was being said to me.

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Terry Arnold: because they said I reacted like I knew what was going on.

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Terry Arnold: and looking back, I'm like what happened this day, or and my husband go. Don't you remember I go? No, all I heard was like noise in my head. I I don't, and I have memory gaps. There's about 3 months that is

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Terry Arnold: I remember Thanksgiving Day.

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Terry Arnold: I don't remember anything until Valentine after Valentine's. So all I don't? I asked. My husband later said, did we just skip Christmas? He goes. No, you don't remember

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Terry Arnold: something.

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Ashley Kinni: Wow!

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Terry Arnold: No, I have one tiny memory

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Terry Arnold: of something, but you know, so were you surprised how much your breasts change, or did your breast change a lot in treatment.

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Ashley Kinni: It changed a lot. I had a really good response. I didn't have a Pcr, but I did have a really good response. Yeah, like my nipple came back, and you know the most of the orange peel went away. It wasn't inflamed, so I had a really good response. Now I did something that is a little different. I so I finished Chemo

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Ashley Kinni: and I got accepted into a clinical trial through Sloan Kettering and.

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Terry Arnold: Is this with Audrey?

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Ashley Kinni: Yes.

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Terry Arnold: Audrey teos. Yeah, I know her.

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Ashley Kinni: Yeah. Okay. So I was their 1st

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Ashley Kinni: patient to complete the the study, the nart, the radiation before surgery. So.

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Ashley Kinni: Yes, so I know.

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Terry Arnold: Smiling, and people listening on the on spotify, or whatever might not know. And and and this is something I'll be honest. It stresses me out. But I also know there's reasons that we do

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Terry Arnold: trials and stuff so hopefully. I never stressed you out by going. You did what? But I know, Audrey. She used to be at Md. Anderson, and she's a Sloan Kettering, and we have agreed to disagree about certain things, but also, too, I think it's fascinating. So tell tell everybody what you did.

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Ashley Kinni: Okay? So I mean, the standard care for Ivc patients is chemo

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Ashley Kinni: surgery, radiation. And then eventually reconstructive surgery. Right? Terry. Okay, so I did, Chemo. And then I got selected to be a part of this trial through Sloan. And basically the trial looked at. What would happen if someone does. Radiation

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Ashley Kinni: completes radiation before surgery, and then at time of surgery, you do the mastectomy. You do you know removal of the lymph nodes, and then you do the reconstructive surgery all at once, which typically Ibc patients have to wait. Is it 6 months to a year for reconstructive.

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Terry Arnold: Actually, they're just now saying a year.

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Terry Arnold: it used to be 2 years now. They're saying a year, and lately it's come into conversation. Maybe 6 months. But it's interesting. I'll get back to what you're saying. So just so. People know the standard care for Ibc is usually chemotherapy. A full radical mastectomy, which means you remove all the skin, you remove all the lymph nodes, not just a few. There's no sentinel node biopsy, because Ibc is a little sneaky sentinel node looks at targeted areas and sees what's affected in the area.

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Terry Arnold: Ivc sometimes can skip for lack of a better way of saying it can skip over a few inches, and you got this little hot node somewhere. So you want to grab that little sucker and get it out of there. So you do what they call a full nodal sweep, and then you do radiation. It's about the size of a sheet of paper.

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Terry Arnold: and then, if someone has reconstruction. They get what they call a deep, they take it from the tummy and build, or from the back, and build no implants, and they remove all that damaged skin. So you did. So you went straight into radiation.

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Ashley Kinni: I went, and yep, yep, I did 25 rounds and I had the bolus. I did that, and I did pretty well with that, like physically and mentally. It was. It was a little emotional, I think. Because it kind of, I think reality starts to like sit in. I think

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Ashley Kinni: in the beginning you're like fight or flight, you know, with the Chemo. And you're just like, Okay, I'm going to do this. And then, like radiation. You know, it's tedious, it's, you know, every day for 5 weeks Monday through Friday, and it was very emotional, I think reality started to.

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Terry Arnold: They prepare us well for that. We have a sense of what chemo is like.

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Terry Arnold: And we see movies, or whatever, or our friends want to go with you. But nobody says, Hey, go to radiation with you. They want to go sit with you and Chemo, and have lunch with you and buy you some pink ribbon or something, but noise, and also, too, nobody talks about radiation. It's very lonely because you have to go in this room by yourself.

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Terry Arnold: And and also there was a fatigue with radiation that I found to be significant.

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Terry Arnold: And maybe it's because I wasn't mentally repaired. But also you're looking at your body. Get worse again because.

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Ashley Kinni: Yeah.

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Terry Arnold: You know, with with your that's why I asked you. Your breast look better. Your affected breast starts to look better. That gives you hope radiation. You've got this this flat. Hopefully, not too icky looking scar. I know mine weren't bad, but all of a sudden that skin is getting burnt, and you. It's it messes with your head.

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Ashley Kinni: Yeah. And your armpit? Yeah, I mean, that was the worst part was right under here, because every time I would move my arm and I had radiation during the summertime. So it was just so hot, and it was.

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Terry Arnold: Hot.

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Ashley Kinni: Yeah, so, but I got through it. I actually biked every day to radiation to and from in the city.

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Terry Arnold: So.

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Ashley Kinni: Yeah, it was. I highly recommend to anyone that can do it, I know, like not a lot of people can. But I was living in the Upper West, and I would bike to the Upper East, where the radiation building for Sloan is at. And it just really

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Ashley Kinni: I had the earliest appointment every day. It was like 7, 30, and I would just like focus on biking, you know, and like not getting hit by a car instead of, like, you know, perseverating on the fact that I was going to radiation. You know it kind of was like a distraction for me, and it also got me active again to like move my body.

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Terry Arnold: Also, too, they were saying, now, if you up your protein significantly, and it's like bodybuilder up protein, not just, you know. Eat a second piece of chicken, and the nutritionists are telling people about this now, and I know it's hard when you're tired, but they say if you can find a way to exercise it does help with the fatigue. So you got through the radiation? Yeah. So then, did you? When they did the they did the mastectomy with instant reconstruction. Did they do a deep, or for the back.

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Ashley Kinni: Deep. Yeah, I did the deep. Yeah, because I had tissue. I just had a baby, and I gained weight from chemo. So I had tissue. So yeah. And then they took 16 lymph nodes and they did a deep flap. So it was an 11 h surgery.

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Ashley Kinni: And yeah, I don't.

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Terry Arnold: Find that recovery because I did not. I have a good pain, tolerance. I'm not a slow healer, but the deep flap for me, because I had to make 2 breasts. It's literally just a time thing you can't will yourself past it. You just literally have to wait.

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Ashley Kinni: Yeah.

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Terry Arnold: Hill, and I'm not good at chilling. How did you find that recovery.

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Ashley Kinni: It was. It was rough. It was really rough, because you're healing from your chest and your abdominal region. You have to wear that binder for like 3 weeks, and then, like the drains of the drains, I hated the drains. Oh, my gosh! I hate! I had like 6 of them, and my.

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Terry Arnold: How long did you have them? Do you remember?

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Ashley Kinni: I didn't have them in that long. I actually healed really quickly and nicely. Thank God, I think because I was 32, 33. No, I was 33 when I had surgery, but I had

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Ashley Kinni: 3 in for a week, and then I had the other 3 in for like a week and a half 2 weeks, so it wasn't terrible.

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Terry Arnold: Bad. Well, that's good, but but it's still, though it's a time thing you you just literally have to, because you can't stand up straight for the 1st week. Your body you won't. It won't let you. You'll tear things, but also, too

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Terry Arnold: you don't want the flap to be rejected by your body.

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Ashley Kinni: That was scary. Yeah.

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Terry Arnold: Flap. Rejection is a real dirty little secret, and women like to talk about. And then you've got a wound. So you really have to like. My doctor told me. He goes. You're gonna have to hold 3 months

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Terry Arnold: where you don't do anything but chill, and I'm like I made my surgery. He got mad at me. Call me. I moved my surgery 3 times because I was having a hard time finding a window, and also wasn't sure about doing it. I was flat for 10 years, so I was ready to do this, but I was kind of scared to mess things up, and he said, if you move your surgery one more time, I won't do it. But honestly, it was hard to find 3 whole months

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Terry Arnold: that there wasn't something, and I needed every minute of those 3 months.

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Ashley Kinni: Yeah, I mean it.

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Terry Arnold: And I drain forever.

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Ashley Kinni: It's it's a really it's a really intense surgery, for sure. I mean it was.

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Ashley Kinni: It was brutal like I slipped in a recliner for like 2 weeks. And I couldn't hold my son. I think that was the hardest part.

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Terry Arnold: Be tough. Yeah.

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Ashley Kinni: Hold him for a couple of weeks, and that.

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Terry Arnold: It's not.

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Terry Arnold: I can see, not holding your baby. Be hard, and that was something with me. I have a lot of grandchildren, and they were like, you can't pick up your grandchildren, and I'm like looking what my kids needed. And when they needed mom time. And so.

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Terry Arnold: if it's not too personal. How do you feel about your body now with this reconstruction? Some women don't like it. Some women love it.

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Ashley Kinni: Yeah, I mean my plastic surgeon did a phenomenal job. I will give her Dr. Caridi at Sloan Kettering. I will give her a lot of a lot of props because she did an amazing job. You know.

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Ashley Kinni: it's it's different. It's different. I think. Now, I'm finally like it'll be 3 years since surgery in September. I think I'm finally accepting my new body, which is crazy because it's been so long. But

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Ashley Kinni: you know I was able to keep my right side. So that's great. But like my left side, like, I don't have the nipple on that side. And you know that's

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Ashley Kinni: that's a that's upsetting right? And but like.

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Terry Arnold: Yeah, what they call a Barbie boob.

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Ashley Kinni: Yes, yes, but I have. Actually, I have a nipple tattoo that was done at Sloan, and it looks really good. Honestly, they did a really great job.

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Ashley Kinni: So I'm thankful for, like all of like the medical advances and technology, because I you know, it does look nice. But I mean, everything looks really good and like my scar has really like healed well, and like you can barely see it. I I use a lot of silicone strips so like

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Ashley Kinni: my scar line is very minimal, and you know my flap looks really great. I did have a reoccurrence scare last year in my flap. So they had to do a biopsy. So now I kind of have this

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Ashley Kinni: little area that doesn't look so great. So I'm a little upset about that, because before it looked

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Ashley Kinni: awesome. But I think I'm gonna get some laser work done by one of the doctors at Sloan. So I mean, there's always like different solutions, and I also did the.

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Terry Arnold: It's weird, too. It's weird, too, because the reason I asked you how you feel your body. I know someone say nobody told me they'd be numb. I mean, you could stick a PIN in the middle of my breast. I wouldn't know you're touching me, or they say, like you have a natural breast. I don't have any, so they say it's weird that one breast is warm and one breast is cold.

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Ashley Kinni: Yeah.

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Terry Arnold: Or they don't have symmetry. I have pretty good symmetry because they built both, but or they just say it's not my real body.

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Terry Arnold: but

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Terry Arnold: you know, and there's all kinds of ways. Women. I did not mind being flat chested so much because I was so grateful to be alive, and everything happened at me so hard and fast I would have done a kitchen table. Mastectomy

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Terry Arnold: did not have cancer in my body, you know.

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Ashley Kinni: Yeah.

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Terry Arnold: But I can also see what women want reconstruction. But also I had significant lymphedema. That's why I had drained so long. They said

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Terry Arnold: I drained lymphatic fluid.

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Terry Arnold: It wasn't necessarily because of the surgery. It was that fluid that couldn't get out of me. My arm was huge. It was. I'm not kidding. It was significant. And so part of my reconstruction plan was to get nodal transfer. That helped me, and it did. But I will always have issues with my arm, but it's not as big as my leg now. I'm not kidding when I say that it was big.

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Terry Arnold: but, like

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Terry Arnold: with you, it's interesting, Audrey, and I've had a few meetings, and it was probably about you. I just didn't know your name, and she was telling me what she's going to do, and I'm like, Dude. You're killing me here. This is so scary. But also it's very interesting, because

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Terry Arnold: I'm seeing just like when I was a young woman. Women got mastectomies first, st and they got chemotherapy later.

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Ashley Kinni: Sure.

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Terry Arnold: Then they learned, if they shrink the breast

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Terry Arnold: they could do a mastectomy that was more effective. So I always was admiring of those trailblazers who were willing to be in a trial.

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Terry Arnold: you know, and and take that risk

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Terry Arnold: for the future, because sometimes it wasn't just about them. It's for the future. And so there is a growing conversation

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Terry Arnold: that it makes sense to do chemotherapy

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Terry Arnold: radiation. Remove all that damaged skin and do this. But again, it's a little scary.

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Ashley Kinni: It is. It is, it is. Yeah.

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Ashley Kinni: They did.

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Terry Arnold: Glad that you understood what you were doing, because one of the things that's hard for me and then I'll shut up is I get really stressed out when women don't know and what. And I want you to have this beautiful buffet of options in front of you and understand every choice you're picking up.

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Terry Arnold: And so then, when you do it.

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Terry Arnold: you're doing it with full of knowledge.

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Terry Arnold: and like, I've known women who. Doctor said, Oh, this is what we're going to do, and then they don't do the right thing. And they didn't tell them. This isn't the standard of care sometimes because they didn't know, or sometimes they make

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Terry Arnold: kind of rude assumptions about what you would want

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Terry Arnold: or what makes them feel good, because I had one doctor tell me. But she's gonna die, anyway. At least I can let her die pretty. And I'm like, I want to stab you in the face.

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Ashley Kinni: Oh no!

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Terry Arnold: You know, cause it's like, well, you know, so

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Terry Arnold: my big deal is cause I know some people would say.

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Terry Arnold: well, I wasn't pro reconstruction. It's not that you are going to live with that decision where nobody else is going to live with it. Yeah. So it's super important to me that you know what's going on.

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Ashley Kinni: Yes.

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Terry Arnold: That's my big, that's my endgame. I want you to know what's going on.

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Ashley Kinni: And I did a lot of research. So they there was another study, the Prada study in the Uk. That was very similar to the nart study at Memorial sun cutting. And it was positive results. And so, like I did a lot of research on that study. And I talked to my doctors about it, and to me, you know I

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Ashley Kinni: I did all the things that standard care that protocol does. I just did it in a different order, you know. So

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Ashley Kinni: you know, it's not for everyone, and that's why I smiled because I knew that I would get some pushback. But for me, listen. I was, you know, a new mom. I didn't want to have multiple surgeries. I just wanted one surgery, and I wanted to like move on, you know, and not completely move on right from cancer, because it's never going to be gone. But I wanted to just

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Ashley Kinni: get through the really hard stuff. And I wanted to do this, and I felt like it. Things were aligning, you know. I was asked to do it. I was the 1st patient I was like, you know what I'm going to do this not only for myself, but also for future.

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Terry Arnold: That's the thing cause. And and that's the deal. And like I said, we're sometimes

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Terry Arnold: back in my day. Which was 17 years ago.

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Terry Arnold: I know a lot of women who did not get the sterile care because it was still being developed.

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Terry Arnold: And it's still being developed, actually, even today, and the doctors sometimes would get them same day reconstruction with skin, sparing surgeries and implants and things like that. And they didn't do well, or they had failed reconstruction, which is a big shame factor. And so a lot of times I used to run these big support groups around the world, and the women who had failed reconstruction would often say, I'm too embarrassed to say that my body is

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Terry Arnold: so messed up, and I live with a wound. Will you be my voice, and so I would be that voice. And sometimes people took it that I was trying to be a negative Nancy about reconstruction. I got a lot of heat when I got reconstruction 10 years later, because people go, you betrayed us. You were one of the flat and fabulous. I called myself a double wide flatty. You know I was fine with it, but also

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Terry Arnold: it been long enough that I was feeling less betrayed in my body, and also the lymphedema really was pushing some decisions, but it was interesting. I got a lot of pushback

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Terry Arnold: from people saying you betrayed us. I said, No, I'm trying to pray, you betray you. There's new science. It's been 17 years.

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Ashley Kinni: Yeah.

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Terry Arnold: And so like, I said, my big thing is, I always want people to just be informed.

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Ashley Kinni: 100.

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Terry Arnold: And then do what you do.

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Ashley Kinni: Yeah.

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Terry Arnold: Because and also it's a custom shoe. Audrey Teos might not have offered this to to somebody else.

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Ashley Kinni: No.

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Terry Arnold: She offered it to you. It's a custom shoe it if we both were size 8 shoe, and they're custom.

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Ashley Kinni: Yes.

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Terry Arnold: They won't fit each other.

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Ashley Kinni: Yeah, no, I mean, it is a very particular niche population that they're looking for like, not everyone can just go do this surgery like it is primarily for Ibc patients. I have a friend. That also did the surgery because she's an Ibc survivor, and you know.

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Ashley Kinni: I also, too, I think, have a lot of faith in my doctors. I think that they are some of the best, in my opinion, and I have a lot of faith in them. And they said.

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Ashley Kinni: Go for it. And I was like, Okay, this is what's best for me and my family. And you know, not everyone is. Gonna see it that way. But that's just

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Ashley Kinni: what I chose.

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Terry Arnold: See progress, I mean, like, I remember, I remember when women would get them. Second, they were brutal. They they didn't like. You can't see if you're on, you know. Pretend they draw an eye shape around your breast, and.

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Terry Arnold: The breast, and then they stitch that close. That's what they used to do. They basically just whack it off flat. And there was this big wound bigger than my hand, where the imprint of your breast would be, and they colorized it. They burned it.

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Ashley Kinni: Oh!

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Terry Arnold: And that's what women had, and it was awful. And I've seen women who had that done so then, later, when you see oh, we can do the chemotherapy, and then we can do these things, and it improves hopefully. These things will keep improving.

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Terry Arnold: you know, and so I don't want to be in the way of progress, like I said. But I just think it's important.

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Terry Arnold: That people know. So I'm glad you're here to share the story, and I'm glad you're here.

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Ashley Kinni: I am 3 years it'll be 3 years, Ned, in September. So yeah.

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Terry Arnold: It's interesting to say 3 years any day, because you said you did have a complete pathological response which honestly, most women with Ibc don't.

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Ashley Kinni: Yeah.

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Terry Arnold: And that is a real hedge, rare.

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Terry Arnold: But most don't, and they can still be okay. That's why you have 3 ports of the surgery treatment you've got, you know, chemo surgery, radiation, whichever order you do it. Each one of those brings a function.

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Ashley Kinni: Yes, yes, and then they I did. 14 rounds of Tdm. One, and I switched from Herceptin and Progetta to Tdm one. So I also did that because I didn't have a complete response. So I did. Almost I did 30 rounds of chemo, right? So.

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Terry Arnold: That's practically a magical drug in it.

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Terry Arnold: It's been amazing.

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Ashley Kinni: It is. Yeah, they call it like Godzilla, like, cause it's kind of like it.

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Terry Arnold: That's the nickname.

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Ashley Kinni: Yeah, they it will kill anything in its way. And so, you know. But I wasn't prepared mentally

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Ashley Kinni: for the Catsila. I thought like I was going to be. I knew I was going to be on like post treatment drugs, but I didn't realize that that was going to come into play. So that was really alarming, and I was definitely devastated that I was going to have to do another 14 rounds of chemo. But it wasn't too bad, you know, because it's an immunotherapy, and it has a little bit of chemo. But

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Ashley Kinni: I did that as well, so I feel like they just threw everything, and they still are so.

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Ashley Kinni: I was also put on anestrazole. I started lupron as soon as I got diagnosed, and then I also, when they did surgery. I had her 2 positive and her 2 negative cells

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Ashley Kinni: and in my tumor. And so they also put me on Versinio, which I end next month.

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Terry Arnold: Well, they did throw the book at you.

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Ashley Kinni: Yeah. So I've.

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Terry Arnold: You know, it is kind of weird when you say you're not mentally prepared, because also, too, when your hair starts coming back.

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Terry Arnold: or you've done what people think of the big thing that they kind of act like. This is all over, and you're back to normal. But there's not.

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Terry Arnold: And it's not the same normal, and it's not over.

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Ashley Kinni: No.

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Terry Arnold: And I know. And and you kind of said something. I'm gonna sum it up when you get the surgery. You kind of want to be one and done.

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Terry Arnold: You know, we don't get to be one and done there's gonna be other things. And I think

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Terry Arnold: we need to talk to people about that.

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Terry Arnold: so we can be better. Supporters of our friends are going through stuff. I know there was 1 point you really wanted to drive home, and I want to wrap this up soon is that you can get cancer when you're pregnant.

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Ashley Kinni: Yes.

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Terry Arnold: How do you say that? Big enough?

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Terry Arnold: That's young ladies who might go? Oh, this present's a little weird.

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Ashley Kinni: Yeah, I think that you know in general, I think younger women should realize that it doesn't matter like your age, your health status, your race anything that cancer, it really can happen to anyone, and especially for women that are pregnant. You know your body. The hormones, like my hormones, went

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Ashley Kinni: crazy, and you know your body can change. And I think it's really important to do monthly breast exams. And I think it's really important, especially when going through pregnancy that you are aware of your body and the changes and anything that feels off like you should talk to your doctor, you know, and encourage your doctor to do monthly

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Ashley Kinni: or every other month. Breast exams when you go in, because, like I said, my doctor did one breast exam, and that was in the beginning of my pregnancy, and I'm not sure if much would have changed. But I think it's important that you have these conversations with your doctor, because.

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Terry Arnold: The signs and symptoms can be vague, but you know some women have just intense inching, or the nipple inverse, but the rash, the peeled, or Blanche usually doesn't show up right away. I almost wish that wasn't the thing that's talked about on the Internet a lot, because usually that's not until the second month. It's not the beginning. Sometimes just that redness, heat rash.

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Terry Arnold: The best way I can think of to tell anyone is a sudden change to one breast

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Terry Arnold: warrants doctor exams, because if you've just had a baby or you're nursing, or you change your birth control, or you've gained or lost weight. Your breast. We always have one that's a little bit bigger than the other.

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Terry Arnold: typically on your dominant side. But the thing is, though a sudden change to one breast

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Terry Arnold: is not changing birth control, not weight loss, not milk coming in. Not.

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Terry Arnold: that is to me the short. But I'm but we need women to hear it from you

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Terry Arnold: because you've been there.

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Ashley Kinni: Yeah, yeah. My my affected side was very like, much larger than than my right side. So I think, yeah, any type of changes you should talk to your doctor. I think it's also important to like knowing your genetic risk

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Ashley Kinni: right? Especially as you get older, having conversations with your doctors about that as well. If there's like family history, of breast cancer or ovarian, I think that is super important.

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Ashley Kinni: Yeah. And just knowing your body and knowing that you can speak up and and talk to your doctor, you know, if you feel like something is off.

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Terry Arnold: That's a perfect way to end it right now to know your body, and don't be afraid to speak up.

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Terry Arnold: and I'm really glad that you shared your story, and I hope you weren't too nervous thinking also give you a hard time, because, like I said, my big deal is, I just want you to know.

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Terry Arnold: I'm grateful for the development, and I'm curious to see what's going to be the future. It's going to be some slow changes, but hopefully there'll be advancements. And personally, I would love to see there not be any Ibc forever.

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Terry Arnold: But it's gonna take a while, and that's why I started the charity to fund research. And

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Terry Arnold: because I meet a lot of women like you, and I want everyone to be happy and healthy and

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Terry Arnold: raise your children, and have a good life.

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Ashley Kinni: Yeah, me, too. Me, too. That's, you know, at the end of the day I think cancer changes you for sure. And you know I view things very different. Now. I'm a different person to be honest, and I think it's you really look at like the little things and value the little things that maybe you wouldn't before cancer.

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Terry Arnold: I could see. Well, there'd be a different different appreciation. Well, I appreciate you being here today. Your story is going to save lives because there's going to be somebody who's going to hear this and say, Oh, my friend said one was different, or I didn't know this could happen

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Terry Arnold: or get someone to the doctor faster to hopefully rule it out. But if they can confirm it, there won't be those delays, and we can make the world better. And for this. So thank you for chatting with us today, and I hope to get to talk to you again. And I'm looking forward to seeing you a very old lady.

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Ashley Kinni: Me too.

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Terry Arnold: Okay.

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Ashley Kinni: Yeah, me, too. Thank you.

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Terry Arnold: Well, I have an old lady, so you have to catch up.

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Ashley Kinni: Okay, take care. Thank you.

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Terry Arnold: Thank you.

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Terry Arnold: Okay, but I'm gonna turn this off now.