With the BRCA mutation and a family history of breast cancer, the “clock” started ticking for Alicia with biannual screenings at age 30. She tried to keep up with the screening schedule, but had young children and decided to go to nursing school. Nine...
With the BRCA mutation and a family history of breast cancer, the “clock” started ticking for Alicia with biannual screenings at age 30. She tried to keep up with the screening schedule, but had young children and decided to go to nursing school. Nine uneventful years went by until she was diagnosed with Stage 2 HER2 negative hormone positive breast cancer in March of 2021.
Although her mastectomy was over two years ago, Alicia’s reconstruction had to wait because of the extreme damage done to her breast tissue by radiation. Her surgeon recommended the DIEP flap reconstruction, in which tissue and vasculature are taken from the stomach and reconnected into muscles under the breast.
Days before Alicia’s DIEP flap reconstruction surgery and 5 night hospital stay, she has her fair share of fears, but is hopeful that the outcome will be better than what she’s going through now.
About Breast Cancer Stories
Breast Cancer Stories is about what happens when you have breast cancer, told in real time. Whether you’ve just been diagnosed with breast cancer or love someone who has, this podcast is here to help you through the shock of diagnosis and treatment.
Host and Executive Producer: Eva Sheie
Co-Host: Kristen Vengler
Editor and Audio Engineer: Daniel Croeser
Theme Music: Them Highs and Lows, Bird of Figment
Production Assistant: Mary Ellen Clarkson
Cover Art Designer: Shawn Hiatt
Assistant Producer: Hannah Burkhart
Breast Cancer Stories is a production of The Axis.
PROUDLY MADE IN AUSTIN, TEXAS
This is a story about what happens when you have breast cancer told in real time.
I'm Eva and my guest today, of course, my always my co-host Kristen, who's really the host now, I'm just the Oz behind the scenes and our very special guest today is Alicia, who was Kristen's infusion nurse at one point at Scripps. And so she has a really interesting story that we wanted to bring to the audience because it's a little different from what we've been used to and we felt like it was something that needed to be told. So welcome Alicia.
Hi. Thank you.
I'm gonna spoiler alert here and say you're about to have a deep flap surgery and we absolutely wanna hear about that. But that was not the beginning of the story. So can you kind of go back to the beginning and take us through, you know, just everything that's happened since then?
Yeah, I can do that. My family history is kind of where it all started. It's all on my dad's side. My grandma, when I was young and both my aunts were both diagnosed with breast cancer in a short time from one another and I was currently pregnant with my second son. So this was back in 2011. After I had my son, I did ask my nurse practitioner at my OB office that postpartum visit if I would be eligible for mammograms earlier, given my family history. And was, how old were you? I was 30 at the time, like just turned 30, a couple months before that. So I was told most likely, no, but the insurance may cover genetic testing. Fortunately, one of my aunts had genetic testing done and knew that she was positive for the BRCA 2 mutation. So I got tested for that and found out early 2012 I think it was that I had the BRCA mutation also. So that kind of prompted a couple different options. I could do surgeries prophylactically or I could be in different screenings throughout the year, just kind of to see how things progressed, if at all. So I chose the latter to do the screenings. It was supposed to be a mammogram and an MRI alternating every six months. So that was the plan at some point.
Did you sort of, like, live by the clock during that time or did you get used to it?
I kind of got used to it. I, so I do have to say I wasn't very good about the mammograms because when I went, being younger, a lot of times the mammograms aren't useful because the tissue is too dense and so you can't see as much. So that's why the recommendation was to wait till you get older typically. So I would get questioned when I went there, why are you here? You're too young. And so it kind of made me feel like, well if I'm not gonna find anything on a ma a mammogram, maybe the MRI is the better way to go. So I did my MRIs annually and I had my annual physical exams, but I only did one mammogram at that time. Everything came back clear all the time. In 2019 we did a big home remodel and we were just busy with a lot of stuff because a lot of things were going on. We were doing a ton of things. I went to my annual exam later in the year, got my authorization to do my screening for my MRI, but we went into 2020 and so I never ended up going in. So I was trying to be good about self-exams in early 2021, I found something that was suspicious, immediately tried to make an appointment and everything kind of went rolling from there.
So March 22nd, 2021 I was diagnosed with breast cancer. That in turn prompted all the doctor's visits, meeting my team, everything and ended up being stage two HER two negative hormone positive inductal, invasive carcinoma.
Yeah. So we had the same, yeah, we had the same receptors and we had the same type.
So part of the reason why I decided to hold off on doing any prophylactic surgery was one, I was having kids, I was in my early thirties, I had just had a second C-section. So another surgery was not really something I was wanting to do at that time. But I also decided to go back to school to become a nurse. So, you know, it's really intense just going through nursing school and then you have to find a job on top of it and then you typically work night shifts. So it was just a lot of different variables that didn't make it an ideal time.
Before you found it, is what you're saying.
Yeah. Right. Yeah.
You're talking about that time between when you started getting monitored and you found cancer.
Right. Right. So that's where I thought the surveillance, the screenings was still a good way to go because everything was always coming back clear.
What made you wanna go back to school to be a nurse?
I don't know, <laugh>. <laugh>. I went to school to be a PE teacher and then had kids and was happy doing what I was doing. And then I had this dream that I, you know, the feeling you get when you have a paper due and it's just like that pressing feeling like, oh my gosh, I need to get this done. It was a dream that kind of was like that. And I woke up thinking, why am I dreaming about school? I'm not going to school, I'm done with school. And then I just decided I wasn't happy doing what I was doing anymore and had considered nursing. So decided, sure, I'll go back to school. <laugh> with a three and a five year old. It wasn't ideal. <laugh>.
Was there a specific specialty of nursing that you were interested in from the beginning?
So in the beginning I was interested in labor and delivery and postpartum, mostly labor and delivery, just given the fact that I was a new mom and I had a lot of interesting feelings about it. And so that was just what I wanted to go into. Kept an open mind through school. And it wasn't until I went through my diagnosis and treatment that I decided to go a different direction and go into oncology, which is how I landed at the infusion center <laugh>,
Which is how we met.
Yeah. You just said to us that you were diagnosed in March of 2021 and it, I can look at the calendar and see if that is over two years ago. And I know, I know just as this sort of um, naive question, asker over here that Kristen's entire experience from beginning to end did not take more than two years.
So will you take us inside the timeline a little, a little further and explain what's been going on?
Definitely. So I started chemo in April and I did I think the same treatment plan that Kristen did, the ACT. So that lasted for 16 weeks and then had a period of time off my search. So I finished, I think it was August, September, I should know this, it's in my phone,
August of 2021,
Something like that. Yes. And then I had my surgery in October, so I did a double mastectomy. That was always gonna be the plan. That was never a question. And I feel fortunate because some people, it is a question, but knowing that I had the BRCA mutation, it was kind of an easy question to answer for me. So then the plan after that was to start radiation, but given it was mid-October, I didn't have the mobility to go to radiation right away. And we went into the holidays. So I didn't start radiation till January of 2022. And that was after getting some physical therapy to get my shoulders mobility back and finished radiation in February, 2023. Was told that I needed to wait at least six months to let everything heal before I could have my reconstruction. So six months after that I was just kind of getting back into work. I'd only been back to work for a few months cuz I took a full year leave of absence. So part of me wanted to build up my P T O again and have the time to take off, plus I just needed to kind of get away from it for a little bit and heal. And I was hoping that the more time would go by, the better it would heal. But I think it's gotten worse <laugh>.
So can you tell me what your original reconstruction plan was gonna look like?
Yeah, originally, well in the very beginning I considered a deep flap but was told I didn't have enough tissue for that and that wasn't really gonna be on the table. So the option became a lat flap or implants. So I currently have expanders, they're under the muscle and it is very uncomfortable. So when we started talking about my reconstruction as it was gonna be laid out, I was like, I want implants, but I would really like to have them over the muscle. I, I don't like them under the muscle anymore. So given the way my skin healed, that kind of went off the table, deep flap came back to the table and the other option was the lat flap. But I like to work out and a lat flap to me doesn't sound functionally normal. So I was kind of pushing towards the deep flap. I did have to get an angio CT to look at the abdominal tissue and the vasculature in there to see if I'd be a candidate to do a deep flap. Fortunately I was, and that's where we are as of right now. The plan is for the deep flap <laugh>.
And to talk a little bit about the, the lat flap. Anybody who has been listening and listened to the things you need for surgery with Dana Donofree, that's what she had back 15, 14 years ago. And she had a revision just a little over a year ago now where she had the implants taken from under the muscle and put over the muscle and she said there was immediate relief of pain from that. And so what's a lat flap?
So the lat flap is where they take a piece of the muscle that's in your back, your latissimus dorsi goes in your back and they kind of wrap it around the front and it almost makes like a bra to hold an implant so that it's not under your chest muscle.
It seems to me just as an observer over 20 years of plastic surgery marketing, that that technique is really not favored anymore. And it, it's almost rarely done.
I don't know. My aunt has one, another girl I met has one. I think it depends on the situation. One of the girls that I had talked to had it done, but she was bigger chested before everything. So she really wanted to kind of be what her normal was and I think that was the way to support that. My aunt did it on one side, but I don't really know anybody else offhand who, who has it.
And so can you tell me with radiation, how many sessions did you have? How many weeks did you have of radiation?
I did six total five weeks of the normal radiation and then the last week was what they called a boost where they just tried to focus in on specific areas.
We had the same.
And you showed me your skin.
Um, at my infusion about two weeks ago and I was, couldn't believe that it still is dark.
As it is.
Did you have a lot of rawness?
Okay. Yeah. Probably pretty similar to what I had.
I mean if I could have gone around topless it probably would've healed a lot better. But I have boys that I live with so that wasn't really the ideal situation. All boys <laugh>. All boys. Yeah. So I kind of had to put some clothes on and it just didn't help. <laugh>
Yeah, I totally get that.
But it was bad. I feel like most people, radiation is the easy part and that was the challenge for me.
Okay. So you were, let me do the math on this. You were 38,
It was 39.
39 when you were diagnosed?
Okay. And it was stage two? Yes. Was there any lymph node involvement?
Yes. I actually had an appointment with my radiation oncologist today and I said how many lymph nodes were there? Everything said multiple <laugh>
She pulled up my imaging and tried to count and she thought said there was maybe like seven.
Okay. So with the damage that you had from radiation and the healing and all of that, that's what really changed the trajectory of the surgery?
Yeah. I mean I could potentially have implants, but Dr. Aria wants to use as much of my own tissue as possible just to help heal the best possible way.
Yeah. Does she share with you why she doesn't wanna use implants?
I think just be, because if I'm, if my tissues as damaged as it is, I don't know if it's going to perfuse as well. If you put an implant in there, it just may not hold properly. Yeah.
Yeah. Okay. So I don't know what this is. <laugh> again, I know that you looked it up beforehand. <laugh>. So can you tell us what D I E P stands for?
Yes. So I had to look up the, cause I always get, forget what the I is. So it's a deep inferior epigastric perforator. And so what they're doing, it's a lot of people will say, oh you're getting a tummy tuck and it's kind of what it is. They are taking the skin and the fat, but there's also vessels in there. And what they'll do is make breast mounds out of that tissue and try to reconnect the vasculature into the mammary vessels. So she told me I would never be able to have a cabbage in the future, which hopefully I never need one. But that it will be kind of constructed into those vessels somehow.
Wait, what's a cabbage?
It's a coronary artery bypass <laugh>.
Oh, okay. Cause I was like, oh I don't like cabbage anyhow. So I wouldn't wanna eat that <laugh>.
I went straight to breastfeeding. Like what does the cabbage leaf have to do with this one?
Nope. The actual procedure. <laugh>.
Got it. Yeah.
Have they told you how many hours that it's gonna take?
It's gonna be between eight and 10 hours. I'm expecting the best sleep of my life.
Alicia, what is your family going to do while you're in there?
Well, both my kids will be home and my husband will be home with them while I'm in the hospital cuz I'll be in the hospital for at least five nights. My youngest is going to fifth grade camp so he won't get to experience any of this. But I should be able to have visitors inclusive of my husband and my son.
Will someone be there with you?
My husband's gonna drop me off, but I think that's his, he's one of those people that if, if he can't do anything directly, he's just like, well I can't do anything to help out so I'm just gonna go about my day. <laugh>.
Oh no, I sent mine home when I was delivering, when I was in labor.
Oh my gosh.
I was like to go home, go sleep at home. I don't need you.
Yeah, that's how he is.
Okay. So what's your preference though?
For what I, it's
Like, like would you want somebody there with you? Would you
Um, not really because he's, I mean he's gonna come as soon as we're done. He'll hopefully be able to come in and see me. I think the visiting hours may be over but hopefully they'll at least come and let him come and say hi. But if I'm sleeping in a surgery, it's not like he's gonna be able to do much.
Yeah, I'm okay with that.
Yeah, I understand. I didn't have a choice cuz of Covid <laugh> but I remember that I really wanted somebody in there with me when I was taken.
Yeah. I think he'll probably stay with me as long as he can and then he'll leave cuz, for the mastectomy, he wasn't allowed to really come in and do anything so.
Yeah. So you know. Exactly. Yeah.
When you get out of surgery, have they explained in any level of detail what you should expect?
I'm not really in detail. I mean I have an expectation because I've had two C-sections so I know kind of how it feels to have my abdomen cut open. I've had the mastectomy so I kind of have an idea of what to expect with my chest being operated on. So it's gonna be all in one thing. I am not somebody who likes to ask for help very much so I, I do know that I'll need to ask for help though to get up and use the bathroom or whatever they need me to do. I'm gonna be in the ICU the first night so I've never had that experience before. I don't really know what to expect.
Yeah. I wonder if they're gonna try to wake you up or try to keep you out or what are they gonna do?
I think I'll probably wake up like they normally would out of a surgery but I don't know. I know they have a lot of monitoring they have to do cuz they are gonna be monitoring blood flow. She said there would be dopplers to make sure the blood is perfusing to the chest. But I don't know what really that looks like.
Maybe they won't let you sleep at all.
I know I probably won't cuz I'm gonna sleep for 10 hours.
Well I'm hoping they wake you up and they give you good pain meds and you get to go back to sleep and they put everything that all your bodily functions on autopilot <laugh>.
And then that way once they move you to your room, you know it's a little bit better. Yeah. You sent me a note, I was asking how you were doing and you sent me a note saying that you had gone to your pre-op last week and that you came out like kind of head spinning even though you were kind of prepared for it. Yeah. What did they tell you to expect from your pre-op? I mean they're, they're giving you all your meds. And you're getting, you know, all that stuff.
I think the part that's kind of sent me for a loop was when we first talked about the surgery and getting it planned, she was pretty confident that I would have a successful deep flap. Then when I saw her this last time for the pre-op, she mentioned in the first visit that the left side for whatever reason I think the way the anatomy is with the vessels is a little bit trickier. So she was glad that it was my right side that was the radiated side cuz hopefully it'll make it easier. But when we met this last time for the pre-op visit, she sounded a little bit less confident that the left side was going to be successful. So I kind of felt like I'm gonna wake up and have a surprise and not know fully what I had. It's possible that maybe she does put an implant in and take the expander out on the left side cuz her focus is on the right side cuz she knows how uncomfortable I am. But I was kind of leaving there feeling like, oh well I thought this was all kind of figured out and now I don't feel totally confident about that.
Yeah. I would feel a little bit, I'd feel a little nervous. <laugh>.
Do you trust that she's gonna do what's best for you?
I do. I do. She really knows what I want. I feel like I've made it pretty clear over and over so I.
Yeah. And you've been with her for like years now, right?
Yeah. So I think she'll do what, I think she'll make the right decision. I just don't like not knowing what that decision might be.
The only thing I can compare that to and it's not really a comparison, is knowing how many drains I was there.
That's exactly what I thought of. Because I remember you talking about that and that's where I kind of went was like, well I guess I'll find out when I wake up.
Yeah. And it sounds like she's really gonna do what needs to be done. I mean I know a lot of times they don't know what, you know, what they're looking at till they get in there.
When you get done with the, this hospital stay and it, you know, they're saying one day in the I C U and five more days or whatever it is, are they saying at least five or like on day five we're throwing you out and you have to go home?
It depends on,
Is it also depending on how you do?
Yeah, it'll depend on how everything's doing. She did mention that I could potentially be there till Friday and in that case I may be able to get my drains out before I go home, which would be really nice. But I'm also not in a hurry to do that if it's not ready to be done. <laugh>.
What's your plan for once you go back home?
I subscribed to Paramount
Have you made one. <laugh>
I have a lot of books.
<laugh> I subscribed to Paramount,
<laugh> I subscribed to Paramount Plus.
But this is the plan?
This is the plan.
<laugh>, I love you <laugh>.
And then when I'm feeling a little better, I'll probably start working on some stuff again.
Okay. So if I was a patient and you were a nurse and I asked you that question, how would you answer it? Just like that <laugh>
<laugh> Uh, I do plan to like get active again, but I also know I have to be smart about it cuz I don't wanna set myself back. So I have to, I have to find things to do to keep myself entertained while I have to sit around <laugh>.
While you have pterodactyl hands.
If I could, if I could give you any advice as a, I've spent most of my, my professional career in patient data and the thing that people are the most unhappy about is that they were unprepared for recovery. So maybe go back and list to Kristen's episode about <laugh>, how she got ready to recover because yeah, she's like the pro and she even made worksheets and checklists that I think you can download them from.
I might have to look those up. Yeah, I have, I have a lot of the stuff from the mastectomy. Again, I remember sleeping was really challenging because I had to sleep on my back. I had to sleep upright. So I imagine more of that. We have a taller bed, which is helpful for getting in and out.
I can teach you how to build the best pillow throne.
Yeah, that's what I knew.
I I really built a recliner in the bed. In fact, even I shared a hotel room at a podcast convention after my exchange surgery and I was like, this is my pillow throne. <laugh>.
It was impressive. Impressive.
You can market that. <laugh>
I totally, I totally could. Do you guys have a recliner at home?
Because that, that's one thing I probably,
I know you can rent them. You might actually be able to just rent one for a few weeks.
I was kind of looking into that a little bit, but I didn't look that hard. So I should probably look again because it's coming up fast. <laugh>,
We're worrying about you right now. Do you have a manchild for a husband or is he pretty helpful?
He, well he can be helpful. He will probably work while I'm in the hospital, but then he can take time off afterwards when I'm home so that he can help me with the things that need to be done. It's like little things like opening pill bottles. I'm like, I can't open this. So he will be around to help me with all that.
And to Kristen's credit, she had to do everything by herself. So she had to come up with all these systems cuz there wasn't anyone like, uh, you know, I can just yell. Um, can you get me a
And um, he just gets whatever I tell him to get me. But Kristen couldn't do that, so.
Yeah, that's a good point.
I'll have to pick her brain.
Yeah. Well I'll I'll set you up girl. <laugh>, if I have to come to your house the day before and be sure it's all okay, I'll do it. <laugh>.
Okay. Sounds good.
I don't do that for everybody. <laugh> only cuz you're local.
Okay. So I am so honored that you have been so vulnerable and open about all of this that's going on. You have a smile on your face and I know that it's also very scary, but my question for you is, what are, what are you doing to be able to keep smiling and not be fearful all the time?
I think I just am hopeful that the outcome is gonna be better than what I'm going through right now. So as much as I'm not looking forward to a big surgery like this, I just feel like it just needs to get done at this point because I want to feel better.
It's that wanting those damn expanders out is very motivating.
Yes. Oh my gosh. The expanders are awful.
They are. I mean, they're not supposed to be in there that long. No, that's the thing. Like, they're not comfortable. I am looking forward to a year from now for you <laugh>.
Yeah. I'm ready. <laugh>
I'm looking forward to like a month from now for you. So your surgery is on the 13th, right? Yes, yes. On May the 13th on a Saturday.
Yep. The day before my birthday, which is also Mother's Day this year.
Happy Mother's Day.
You should be getting really good gifts, <laugh>. Yeah, I'm, um, thank you again.
for being, being willing to be open and it's nice that you have also like some nursing background to be able to understand all that's going on too, and explain it in a way that's was easy to understand cuz I was completely like blown away by what a deep surgery was. So
I'm happy to share and explain anything that I can, <laugh>
Well, I look forward to talking to you in about another week and a half and let me know if you need anything in the meantime. And we will have a little session about getting you prepped.
All right, sounds good.
I'll turn the Paramount plus off for that one. <laugh> Thank you.
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