Real Talk: Why Didn’t Someone Tell Me?

[00:00:00] Adam Walker: From Susan G Komen, this is Real Pink, a podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room.

[00:00:17] This is Real Pink, a podcast conversation where we’re digging deep into breast cancer and the realities patients and survivors face every day. We’re talking openly and honestly about just how difficult breast cancer can be, from being diagnosed to selecting the right treatment plan. to living day to day with metastatic breast cancer and life after treatment ends.

[00:00:38] In today’s episode, we’re calling all listeners, young and old, to have conversations with trusted health professionals about their risk of cancer. While breast cancer is most common in older women, today’s guests remind us that young women get breast cancer too. And knowing if you have a genetic predisposition to breast cancer could save your life.

[00:00:58] Dani Alderman is 30 years old and a one year survivor of triple negative breast cancer. Her maternal grandmother had breast cancer at a young age, so Dani is proactive about her health and gets screened every six months. Her mom has not had breast cancer and doesn’t carry a genetic link to breast cancer.

[00:01:15] But Dani didn’t know that a history of ovarian cancer on her dad’s side of the family could give her a greater risk of breast cancer. Kasey Lipinski is 38 years old and living with metastatic breast cancer. Prostate cancer has affected her father and grandfather, but nobody in her family has had breast cancer.

[00:01:34] Kasey didn’t know that a prevalence of prostate cancer on her paternal side was a warning sign that she might be at risk of breast cancer. Ladies, thank you for being here today. This episode is appropriately titled, Why Didn’t Someone Tell Me? So let’s dive in. Dani, let’s start with you. You were diagnosed at a very young age, 29.

[00:01:52] It sounds like you knew breast cancer might be something to be aware of, but surprisingly the risk came from your father’s side of the family. Can you tell us more about that? 

[00:02:01] Dani Alderman: Yes, definitely. So my maternal grandmother had breast cancer in her early 40s. And so when my mom was going through her mammogram process, her doctor suggested that she get tested for the BRCA gene, which increases your risk of breast.

[00:02:18] ovarian prostate and pancreatic cancer. And when my mom tested negative, her doctor actually said, you know, it’s great that you’re negative, but your children get their genes from both sides. So you really need to have your husband get tested as well and make sure if he is positive, then both your daughters should also get tested. 

[00:02:39] And so we did learn that my dad’s sister, having died very young of ovarian cancer, she was diagnosed at age 33. Would increase this risk of BRCA. And so we were all tested and we all found out that we were positive. And so given that test, we started getting my sister and I, who’s four years older, started doing proactive MRI screenings.

[00:03:03] When you’re under the age of 30, they do MRIs because they can pick up more dense breast tissue than mammograms can. And so I was doing that. And in between two, six months. Proactive screenings. They found a stage one triple negative breast cancer. And I was really lucky to find this so early because I knew and was getting screened.

[00:03:26] And I was about to go through the embryo freezing process just to, because I had, because of the ovarian risk, I had fallopian tube surgery to. reduced my risk of ovarian cancer there. And so I had to go through the IVF process and I was being tracked and they told me it would be a really good idea before I got all these hormones to really make sure I was on that six month schedule.

[00:03:48] And so I was super lucky to find it early because of my risk, but still had to go through. A double mastectomy and chemotherapy and so I think important for people to know when I first went through the process and was speaking to my doctor, my oncologist, they were saying, you know, if you get breast cancer, it won’t be a big deal.

[00:04:09] We proactively screen you. Well, I’m here to say it still is a big deal. Still a lot to endure. So want to make sure that other young women, you know, know their risk and can catch things early or, you know, take preventative measures. 

[00:04:26] Adam Walker: Yeah. And thank you for sharing that Dani and Kasey, we’d like to, you know, hear your story as well.

[00:04:31] You two were young when you were diagnosed with metastatic breast cancer. Can you tell us about how you found your cancer and what you’ve learned since about the link to prostate cancer? And then I’d love for you to do too, to just kind of talk with one another about your stories and your histories.

[00:04:45] Kasey Lipinski: Yeah, sure. So gosh, I was in the shower one day and I happened to find it a lump in my left breast. I was 38 years old, so. You know, besides my yearly annual checkup at my OBGYN and just, you know, feeling around every once in a while I, you know, wasn’t getting screened because I didn’t know that I had any increased risk.

[00:05:20] So a little history on me, I had a breast reduction at age 24. My breasts were large, very dense. Always felt a little bit lumpy but this one felt different in the shower. Kind of like round, but movable. So I wasn’t like overly concerned about it. I was like, okay, but this is new and I don’t feel it anywhere else.

[00:05:49] So I’m going to my PCP in two weeks and I’ll bring it up then. So I went to my PCP appointment and I brought it up to her. And she felt it and she was like, again, it’s probably nothing, but I just want to be cautious of it. Let’s order a mammogram with a, like, guided ultrasound. So that took forever. That took three weeks.

[00:06:18] No matter where I called, I couldn’t get in any sooner. I called my PCP back and told her, hey, this is a three week wait. Like, is that okay? Like, do you feel concerned by that? And she’s like, no, I don’t feel concerned by that. You’re, it’s fine. So I was like, okay, peace of mind. She’s not overly concerned. So we went to the mammogram and then they did an ultrasound and during the ultrasound they asked me if I had any like vaccines recently or was I sick recently? 

[00:06:54] And I was like, We had COVID in the early part of January. This was January of this year. And and this was now February. When I had this done and towards the end of February and then the radiologist came in and she was like, we think this is just a fibro and a Noma. But I have a little concern because one of your lymph nodes.

[00:07:24] is slightly, ever so slightly swollen. She’s like, so that gives me pause because now we’re seeing a lump and we see a lymph node swollen in the same, on the same side. She’s like, and I instantly started crying just because you do, you know, your mind races and you start Googling before your mammogram appointment.

[00:07:52] And when lymph node is introduced. I just kind of knew some, like, this wasn’t good. So she said she wanted to do a biopsy of both. And I was crying, and she was like, I don’t want you to be upset. Like, I’m really teetering on whether to even test this because it’s ever so slightly swollen. It could be anything.

[00:08:15] And I was like, no, I want to do it. So we scheduled that. Again, was going to take three weeks. to get my biopsy and I had a full meltdown and the lady happened miraculously to have something the next morning at 9 a. m. Thank God. And then I got my results that Friday. They told me it was going to be seven to 12 days.

[00:08:45] It ended up coming that Friday while I was at work. I saw an oncologist that following Monday. So from Friday, three days later, I saw an oncologist. In Pittsburgh at McGee and I was diagnosed with stage two so early stage two invasive duct, ductal carcinoma, so it was both my lymph node and the lump, so that was on March 1st, and then, guys I started chemo March 25th, so I have, I’m currently.

[00:09:32] So my, my, I guess my path is 12 weeks every week chemo. And then I have, I’m coming up on my, I just did my 11th chemo yesterday. So I have one more next Monday, then I’m going to get a three week break. And then I’m going to have four more chemos over the course of eight weeks. I’ll get a month off, I’ll have a double mastectomy, and then I’ll do radiation as well.

[00:10:06] So, on the positive side, my doctors are incredible, my my, everyone at McGee is fabulous, I have a strong support system. The biggest thing for me and this podcast, I believe, is when I met with the genetics

[00:10:31] First of all, I would have no thought because, like, even my doctors had no pause when we gave them our history, like, family history. There’s no cancer besides, like, early stage like, melanoma on my gram side, so that’s my mom’s mother. No other cancer on her side of the family. My father’s side.

[00:10:57] My dad. was diagnosed with prostate cancer 17 years ago. And he had his prostate removed. He’s still, he did radiation. He still takes injections every three months and he gets tested every three months. My oncologist was like, not, concerned by any of our medical history. He said, this is, and I remember he said, This is just a.

[00:11:29] Like something very bad happening to a very good person. There’s no rhyme or reason for it. Now the genetics counselor, when she did the family tree, she showed me the different lengths and all the different cancer markers that they were going to be testing me for. And I was just like, Oh my God, like your future is like so grim at that point, not knowing.

[00:11:56] And it takes like, again, I don’t know. Three, three is the magic number, like three weeks for this information to come back. So after the dust had settled with me realizing that I had breast cancer and everything I was going to have to go through and I was finally like, all right, I’m going to do this. I got a call from my oncologist nurse.

[00:12:19] to tell me I had BRCA2 gene, which was like finding out I had cancer all over again, it felt like. I was, like, had a couple days where I just, like, couldn’t, it was so much, because it is, like Dani said, it’s a 70 percent chance in my lifetime that I was going to get breast cancer. It’s an increased risk of prostate cancer, and, which obviously I don’t have to worry about, but it now makes sense.

[00:12:53] It came from my dad. It is an increased risk of melanoma. It is an increased risk of pancreatic cancer and ovarian, but breast and ovarian are obviously most important for me because they’re the high, I think ovarian is 30 percent chance. Now it’s not significantly higher than the average woman.

[00:13:18] anything, is high enough. So my plan is to, after I hopefully get through all of the breast side, I’m then going to meet with a gynecological oncologist to have everything removed. I also was presented with like DNA freezing eggs. I am lucky enough, I have a six year old daughter and I have a four year old daughter.

[00:13:49] So I, I guess back to the prostate cancer so with my dad’s diagnosis 17 years ago, nobody told him. He told, he was told that my brothers should get, I have two brothers, that they should be tested by the time they were 40, but no one mentioned that I could carry anything or really they didn’t do genetic testing.

[00:14:15] I asked the genetics counselor why my dad wasn’t told. And she said, likely they didn’t see like a hereditary link at that point. There’s no. Looking backwards, right? Like, I can’t change anything about what has happened for me, but I would love to change it for the people. I think that everybody, like my passion right now is the link between prostate and breast because breast cancer is so common among women.

[00:14:48] It’s becoming more common among young women and I think, I know that I’ve heard of so many men being diagnosed with prostate cancer. And so, with that strong link, and like, how many people are being diagnosed right now, We need to, shouting it from the rooftop, to get tested for these genes, which is really hard to do, also. 

[00:15:20] I’m so thankful for you, Dani, that, first of all, that they were testing you at such a young age, because at 29, gosh, Your life is just getting started. I can’t even imagine. Well, I can’t imagine a little bit more 

[00:15:40] Dani Alderman: than a little bit. 

[00:15:41] Adam Walker: Yeah. 

[00:15:42] Dani Alderman: Yeah. I think for and you make a lot of great points. And I think, you know, the experience you had when they were telling you, you know, this is nothing to worry about.

[00:15:52] And, you know, when I was having my biopsy after I had the M. R. I. And then ultimately having mammogram, the woman who is doing it said, Oh, honey, don’t you worry? It looks like a cluster of cysts and I wanted to call her the next day after my diagnosis and, you know, and I had a couple of scares before, you know, I found out when I was pregnant.

[00:16:17] 27 about the bronco and I brought one gene, which was very, you know, there’s two, two types of yeah, one and two there. And so I had a couple of scares from the MRIs. And so I thought they were being overly cautious. And so, and she told me that it gives me that peace of mind. And I think for you, the same thing.

[00:16:38] I’m curious, you know, how you felt seeing. Being told time and time again, like, Oh, you should get a mammogram, but you know, no rush on it. And then again, similar to you, I had to wait, I think three weeks must be the magic number. 

[00:16:50] Kasey Lipinski: It has to be. I feel like people want to make you feel better. The radiologist who did my biopsy was also like saying like, Oh, it moves around.

[00:17:05] That’s a really good thing. Like it, it’s like cancer usually like is, it doesn’t move. So that’s really positive. And like, I can’t get ahold of this lymph node. So I was like trying to, I was trying to grasp onto any little hope that, you know, maybe it was from COVID or maybe whatever. But I think since then, my, one of my best friends actually, when I was diagnosed, she had been putting off a pain in her boob. 

[00:17:38] And so she finally, Went to the, we actually go to the same OB GYN and she went in the OB GYN and I’m devastated to hear this, like made her feel like she was crazy because of me, which is really disheartening. Like, first of all, she has a lump in her breast. She’s not being crazy to get it checked.

[00:18:04] One of her best friends just was diagnosed with breast cancer. Like, you know, like, don’t make people feel that way, like, I don’t understand. So, she actually went, they ordered the mammogram, she was like, the OBGYN said, If it’ll make you feel better, we can do a mammogram. Are you kidding me? She has a lump in her breast.

[00:18:28] And again, three weeks to get the mammogram. Another three, they had to biopsy it then. She just got her biopsy results last week, and it is benign. Thankfully, but like, they’re going to watch it because you also just don’t know. 

[00:18:45] Dani Alderman: Yeah, I think there is an alarming rate and, you know, they’re not sure why this is happening, but I think that is so important why it is, you know, to get genetic testing and know your risk, as you mentioned with the ovarian cancer risk as well, which is part of the BRCA gene, there is no screening.

[00:19:02] Unlike with cancer, you can do MRIs and mammograms. The only, you know, preventative thing you can do is surgery. And, you know, I think for women to know that and, you know, to know your options from the breast perspective as well. I mentioned my first oncologist when they were just screening me had said, you know, it won’t be a big deal if you get it.

[00:19:21] And so for myself, I was thinking about a prophylactic mastectomy, which means proactively doing a mastectomy before cancer. For those who aren’t familiar and. You know, given that I was, you know, maybe putting it off or thinking, well, I’m 20, 29 years old. I don’t need to do this now. I can wait until after children.

[00:19:40] And so I’m not, you know, saying that surgery is the right option for a lot of people, but just to know what options you have and maybe not to put things off. You know, for my family, my sister also has BRCA one. And, you know, after seeing me go through this, I really encouraged her to do the prophylactic mastectomy, which she did.

[00:19:58] And now, you know, she doesn’t have to worry about that. Yeah. Risk for the rest of her life. And I don’t know how it’s, you think about with your children and you’ll do it for 

[00:20:09] Kasey Lipinski: my, I mean, I think about like, people have asked me, like, what would you have done if you knew? And I believe that first of all, like if I would have known, I don’t know, I don’t know what I would have done, but I can say like me going through what I’m going through right now, I don’t want anyone else to have to go through this.

[00:20:33] Like it is what it is and I’m doing it and I’m trying to do my everyday life the way that I’m sure you did. And I’m also putting on a very big brave face for my children. They know that I’m sick, but they don’t know the extent of it. They know that my medicine makes me tired and it’s going to make me lose my hair, which everybody is perfectly fine with now.

[00:20:59] It’s just like weird to see me with hair now. Now, my daughters, like you said, they’re going to have a 50 50 chance, which I also think is something that is a misconception. My hairstylist her dad had prostate cancer. Her dad’s dad had prostate cancer. Her love, her grandmother on her mother’s side had prostate cancer.

[00:21:25] rest. So I was encouraging her to get genetic testing and she was like, but you get those genes from the maternal side. And I was like, that is not true. I was like, I talked to the genetic counselor. That is not true. Like it’s a 50 50 chance. You don’t know. And it’s a 

[00:21:46] Dani Alderman: 50 50 for my sister and I, it’s important for people to know too.

[00:21:48] There’s two children, but it’s not like, well, if I had it, my sister wouldn’t, it’s an independent, each person has that same. probability and we both have it, unfortunately. 

[00:21:58] Kasey Lipinski: How many rounds of chemo did you have to do, Dani? 

[00:22:01] Dani Alderman: I had four rounds of Taxotere and cyclometaside. I was lucky that I did the cold capping therapy for the hair, which hopefully raised more awareness about that.

[00:22:14] I had no idea that existed before and I was super lucky with my results after things have grown back. I lost kind of like my headband shape of hair. And it’s been growing back really well. I’ve had a keratin treatment. So I’ve had a little bit of devil horns, chemo curls going on. 

[00:22:32] Kasey Lipinski: Oh were you?

[00:22:33] So you got curls when it came back? Everyone keeps telling me that I’m like, I’ve never had curls. Like I don’t know how to. So I actually didn’t know about the cold capping. A friend of mine told me about it. I bought it and then I realized that it probably wasn’t going to be best for me because I’m an athlete, I work out a lot I love to get my sweat on, and for my mental health too, and there was a lot of, like, no’s for the cold capping, like, sweating is bad, basically and swimming, we have a pool, so that was, like, important to me, so I actually donated it, cause they wouldn’t return it, I didn’t even open it, and they wouldn’t return it.

[00:23:24] But I’ve seen a lot of girls with a lot of success with that. So hopefully that keeps improving too. 

[00:23:30] Dani Alderman: Yeah, it’s really the technology is improving and I think there’s a lot, I think that people don’t see the kind of the behind the scenes, you know, whether it’s visible things or other symptoms that women go through.

[00:23:41] And I think it’s important to know that. And I also did want to go back to your point about, you know, testing when your children are 18 years old, one of the amazing things that I think it’s important for people. We may be going through this to know if you do go through the egg freezing or embryo freezing process.

[00:23:59] They now have technology where you can test to see if your embryos carry BRCA. So if you don’t want to pass it on to your children, you can choose to use embryos that don’t contain the BRCA gene. 

[00:24:10] Kasey Lipinski: Wow, that’s incredible. That is real. I was wondering, so when you’re pregnant, you have, I mean, When I was pregnant, when anyone’s pregnant, you have the choice to do genetic testing to see if your child has, like, increased risk for, like, Down syndrome and many other, like, cystic fibrosis, many other things.

[00:24:42] And I was wondering if they were looking into, like, the Baraka gene, like, those types of cancerous things. Not that, like, I myself chose not to do it. But like, if they can do anything about it at that stage, or like, any type of, like, vaccination when that time comes, would be obviously very advanced, but also incredible for the cancer world.

[00:25:09] Dani Alderman: Yeah, I hope there is a vaccine eventually, but at least there’s, yeah, this stuff that you can at least test and know. Ahead of time. So that’s definitely an improvement and helping to, you know, bring that next generation along to not have to endure what you and I have been. And, you know, hopefully by the time your children come of age, there will be a vaccine.

[00:25:34] Kasey Lipinski: Yes. And hopefully like we both stay cancer free once I’m through this and you’ve done everything you can. Dani, are you like doing additional? Like I’ve heard of like holistic. 

[00:25:52] Dani Alderman: Yes, I actually, that’s a great question. I just I went to an ultra wellness center just a couple of weeks ago to really take a holistic approach to my, you know, I have an amazing oncology team.

[00:26:02] We’re also in Kettering and New York City. And they’ve been really supportive of a full integrative approach, but I also went to see another doctor just to understand, you know, they look at. Your gut, your microbiome, they look at, you know, things that you can do from a supplement perspective, you know, detoxifying after chemotherapy, looking at different supplements that you can take to boost your antioxidants and really taking an individualized approach.

[00:26:25] And so I can’t, you know, say enough good things about the process to make sure that you’re looking at your your wellness holistically and hopefully you can do the same once you’ve 

[00:26:35] Kasey Lipinski: 100% Absolutely. And it just, it’s just crazy what your mind is open to once you’re diagnosed with this but we’re not alone.

[00:26:49] And someone told me early on, not too early on, but I guess it’s only been three months for me here, but we’re part of a club that nobody wanted to be a part of. But we’re never alone. So I’m so happy to have met you, Dani. I feel like I’m going to reach out after and get information on that holistic side of it, because the more we know, 

[00:27:16] Dani Alderman: the better.

[00:27:17] 100%. Yeah. It’s been so great talking to you. And I think that is one benefit is that you gain a whole community of people and hopefully those listening and I’m sure, you know, hopefully you’re feeling like you’re not alone if you’re going through this or have a loved one in your life going through this.

[00:27:36] Adam Walker: Well, ladies I really appreciate you just sharing your stories. It’s been really good to just be a fly on the wall and begin to ever so slightly empathize with your experience. I wonder for the listener that’s listening right now to this conversation and thinking about all the people in their family that have had cancer.

[00:28:00] What would you want that person to know? 

[00:28:02] Kasey Lipinski: I think that I would just want them to know, like, share the information. Make sure that your family members know about it. You know there are screens at your OBGYN, at your PCP where they have you fill out, you know, your family history. Make sure you know it. 

[00:28:28] And make sure that you share that with them so that hopefully the doctors can see that and start to piece together and hopefully they start encouraging genetic testing rather than people calling them and asking them for it. I think I’ve had at least a handful of friends. Since knowing, finding out about me, who have had family members with prostate cancer on one side, maybe breast cancer on the other side who reached out to their OBGYN.

[00:29:12] That’s what I’ve been communicating to people to start with and request that genetic testing. It’s not, Super easy. And it takes time. So the sooner you do it, I know it’s scary. It’s scary. Like I’m sure Dani was not overly excited to get results of those genetic tests. Because then you’re presented with choices choices that you probably never thought you were ever going to have to make that are impactful for the rest of your life.

[00:29:53] You’d rather know, I would have rather have known so that I had a choice. And so that’s 

[00:30:02] my spiel.

[00:30:04] Dani Alderman: I agree Kasey. I think it’s scary to find out, but it’s scarier not to know. I think you were very good about knowing your body and trusting your body. And, you know, I asked my oncologist, you know, how long would it have taken me to feel a lump if I didn’t know?

[00:30:20] Because triple negative cancer is a very aggressive form of cancer. It all, you know, had already developed you know, in between six months to the point where I had to go through the treatment. So you And she said it probably would have taken two to three years for Wow. And at that point it would have been stage four.

[00:30:38] And so I think that’s a really important message is that is a very important message. It’s, you know, it’s definitely scary and I didn’t want to be presented with the options, but I think knowing what I, you know, I like to say that I was, yeah, save my own life there. And I think that’s really important and advocating for yourself.

[00:30:58] You mentioned, you know, you proactively went to your PCP and said, I felt this lump. I think For me, one of the things that I advocated for myself was seeing my oncologist versus seeing a nurse practitioner. I wanted my oncologist who knew my story 

[00:31:14] Doing my six month check in and he was the one who really pushed for, as I was going through this embryo freezing for me to do this second MRI and, you know, in a way he saved my life by doing that.

[00:31:25] If I had seen the nurse practitioner, if I wasn’t as familiar with that day, maybe she wouldn’t have recommended that. And so I think that, advocating for yourself. You know, you kept calling and made sure you got that next appointment sooner and making sure wherever you can, because no one will advocate for you like you can.

[00:31:43] Kasey Lipinski: A hundred percent. I hundred percent agree with that. Trust your instincts. 

[00:31:49] Adam Walker: That’s it. That’s right. Trust me. I’ve heard that a lot on this show. And it’s so, so important. Ladies, thank you so much for your time today. Thank you for opening up your lives and sharing your stories and Kasey, happy birthday to your daughter.

[00:32:02] Kasey Lipinski: Thank you. Thank you for doing this. Thank you.

[00:32:10] Adam Walker: Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit realpink. komen. org and for more on breast cancer, visit Komen. org. Make sure to check out at Susan G Komen on social media. I’m your host, Adam. You can find me on Twitter at AJ Walker, or on my blog, adamjwalker.[00:32:28] com.