[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.
[00:00:37] Today we’re speaking with a family who only knows life with breast cancer, with a strong family history of both breast cancer and BRCA gene mutations on the maternal side, everyone has always wondered when, not if breast cancer would affect them too. When Kathryn was diagnosed in her early thirties like her mother was, it unveiled the difficulties of being diagnosed as a young woman.
[00:01:02] It also spurred a series of decisions by her two sisters, one of which is her twin. This is a story of support, empowerment, struggle, guilt, and pain, but most of all. Family Today, we welcome sisters, Kathryn, Christine and Cara and their mom, Vicki, to the show to talk about experiences. Kathryn, let’s start with you.
[00:01:23] We’d love to hear more about your breast cancer story and how your family has been impacted by breast cancer. And then when you finish, we’ll open up a conversation to all of you. We’d love to hear your individual experiences, what it was like for you when Kathryn was diagnosed, and what you’ve learned about yourselves as a family.
[00:01:39] As you’ve dealt with this diagnosis and the increased risk of breast cancer. So, Kathryn, over to you.
[00:01:45] Kathryn: Yeah, thank you so much. And I want to start by saying, you know, our family does only know life with cancer, but that can sound a lot more heavy than it is sometimes. I think the reason that’s the case is because of my mother and her mother and other maternal lines, history of the disease.
[00:02:08] And so my sisters and I, our knowledge of breast cancer starts with my mom. So I want to start with letting her share a little bit of her story and how it affected her life, and I can kind of add on to why we chose the route of proactive screening from there.
[00:02:28] Vicki: Well, hi. Thanks. My name’s Vicki. I’m Kathryn’s mom and my mother had breast cancer when I was
[00:02:36] 30 when she was 36. And at that time it was in 1966, and as you can imagine, the advances in cancer were not as they are today. And she had a mastectomy. And then four years later, she had cancer in her other breast, and then she had a double mastectomy. Then eventually she succumbed to lung, brain and breast cancer and died on her 41st birthday.
[00:03:08] So as you can imagine, that was very hard for me. Having my mom die when I was only 11 years old. Fast forward to when I’m 36, I discovered I had breast cancer and I had a lumpectomy, and then four years later I had found I had breast cancer again in the other breast, and so I had a double mastectomy.
[00:03:33] And then one year prior to actually my second breast cancer, I found out I had early detection of ovarian cancer and I had my ovary taken out. And 10 years later when I was 50, I developed tongue cancer. So it was a long road, but with all of that knowledge I am always worried that my daughters would have cancer one day and then we, I turn it over to Kathryn.
[00:04:05] Kathryn: Yeah. And so I think cancer to us was no longer a death sentence. Obviously my mom was super strong and survived, not once, not twice, but cancer treatment, radiation, chemotherapy, surgery three different times. And so, mom, you were just such a strong example of like, cancer exists. But it doesn’t have to be the end.
[00:04:33] It’s just how you power through and it’s a temporary pain that you can get through with the right doctors and the right support. So obviously having all of us having watched my mom go through that I’m laughing, but it was terrible. To watch somebody go through that type of treatment to constantly lose their hair, to lose body parts.
[00:04:55] You always somehow had a smile and made it look fun. Certain parts looked terrible, but. Because of that, we were very concerned with not having to do what my mom had to do. And so in 2000, and I believe it was 17, we all went through genetic testing for the BRCA1 gene, which my mom was a carrier of, and all three of us that year found out we were positive.
[00:05:24] So my sister, Christine and I, we were. 27 years old. My sister Cara was 24 years old, and when you find out you’re positive for that gene, your rate of breast and ovarian cancer is quite high, especially knowing my mom and her mom and other family members had it as well. So there’s two options.
[00:05:44] Preventative screening or just an immediate double mastectomy. I think as 20 somethings. None of us were ready for a double mastectomy. I think we all had that number 36. My mom got cancer at 36. Her mom got cancer at 36. That was like a number. I always thought that I need to remove my breast by 36. I maybe can have some kids first.
[00:06:08] I can breastfeed first. And so we all chose the route of preventative screening, which means every six months you go in for a mammogram. And Christine and I think had been in every year for three years in a row had a mammogram. Each of those came up with spots. We had MRIs each time those MRIs came up with spots.
[00:06:33] And then we had to have our breast biopsied. And so I had two breasts biopsies. By the time I was 30 that both came up negative. So in my mind this was just kind of how it goes Every single year you go in, you find these, you get it checked, it’s negative. During COVID, that was not an option to go in.
[00:06:55] And so skipped that year. I got married, I went on a honeymoon, and my husband and I were starting to try to have kids, and when you are pregnant and your milk plans start to fill up, those tests are much harder to read. And so. We were just going to skip that year and move forward with trying to get pregnant.
[00:07:15] But my husband actually urged me. He said, I think you should go in one more time. Get checked. You won’t be able to for about two years until then. So I went in for a routine mammogram. Had a spot, got a biopsied and got a call a couple days later that I had breast cancer. I had no side effects.
[00:07:37] I had no lumps. I was like the healthiest that I had ever been, just coming back from my wedding. And I will say it was like shocking to say the least. I remember picking up the phone and they were telling me I had invasive ductal carcinoma. I was kind of zoning out at a certain point and how to stop the woman on the phone who was reading me my scan and ask her if I had cancer.
[00:08:03] And she said, yes, you have cancer. And this was a Thursday evening. I was actually scheduled to go see a play and out to dinner with my mother and father. And Cara, were you there, Cara? And so broke the news to my husband, hyperventilated cried, set up appointments to go figure out what was next.
[00:08:27] And then texted my boss, Abby, immediately after, who’s one of my closest friends, to let her know I wouldn’t be coming to work tomorrow. And of course, she was the most supportive in the entire world. I went to the play with my parents.
[00:08:41] Vicki: She went to the play.
[00:08:42] Kathryn: And out to dinner and did not tell them I had cancer.
[00:08:46] I didn’t think that was the right time. And the next day kind of woke up and did my tour of duty to all my family members to spread the word, which was kind of immediately met with laughs and like disbelief. But it was true, it was real. So I was 31 at the time and very lucky because I found my cancer at stage one.
[00:09:10] I then underwent a couple egg retrievals because I knew I’d need chemotherapy. I had triple negative breast cancer, so it’s one of the most aggressive and fastest growing types of breast cancer. So I did two egg retrievals to preserve my fertility and after that I did a double mastectomy. By the time they took my breasts off, the cancer had grown from stage one to stage two B almost like 60% growth within two months.
[00:09:45] So that’s how fast it grew. And then after that, I underwent eight rounds of dose chemo every two weeks on a Friday. And kind of spent 10 months just going through treatment. And it was definitely painful. It was challenging, it was hard. Losing my hair was tough. I think losing the breasts was the most tough.
[00:10:16] All of us now have went through a double mastectomy, and I can say with full confidence that I don’t think there’s many things worse than that surgery and the recovery and the pain and the drains and the vision of what your chest looks like when you come out. I’ll never forget how scared I was just to kind of look at my own body.
[00:10:37] But ultimately I got through it and my mantra was that pain is temporary and I feel so lucky that one, I had my mom to show me that you can do this again. It’s just a. It’s going to be a bad year. Your life’s going to be on pause a little. I had my sisters, we still had a ton of fun that year. Like we still had family dinners.
[00:10:59] We still went to parties. I had my niece come lay in bed with me on hard days and cheer me up. She was one and a half. She was there when you Cut your hair.
[00:11:12] And my, my work too. I chose to continue working. It is a very motivating job for me and something that I love. And they were just so supportive at making sure I could be there when I could and I had support when I couldn’t.
[00:11:30] And that ultimately is kind of what drew me closer to Susan G Komen. The year I was diagnosed, my office, our Chicago office rallied and put together Kath’s crew for the 20 mile walk in Chicago. Raised over $70,000, flew folks in from all around the company to walk, and I think there was about 40 of us that did the 20 mile walk around Chicago for breast cancer.
[00:11:57] And so it’s kind of what led me here today. And ultimately I’ll pass it to Christine and Cara because I think what they saw me go through affected how they thought of their futures and how they handled their genetic diagnosis a little bit differently.
[00:12:17] Christine: Yeah. Cara, do you care if I take it.
[00:12:20] Cara: No, you went first.
[00:12:21] So Natural order of things. Yes.
[00:12:25] Christine: I went, I, the day that Kathryn told me that she had cancer, I was, it was like a Sunday morning or something, and Friday, we Friday morning, and we were just hanging out with the kids in the living room. And all of a sudden Kathryn comes in and she drops this bomb.
[00:12:43] And I kind of remember being very shocked and in disbelief and confused and scared. It’s get still makes me emotional. And then I was breastfeeding my first daughter. I had been in childcare forever and I always knew that was something that I wanted to try when I had kids because I would potentially be
[00:13:05] removing my breasts one day, but that was the day I decided I need to do something about this right now. So I called a couple different people to make appointments regarding, getting a mastectomy and I went in and went through the process and they let me know that because I had breastfed for so long, I would have to wait a little while for my glands to kind of dissipate before I could have them removed, which I didn’t realize would be an issue.
[00:13:35] But for any moms out there. It’s an issue. And then so I waited about three months and then had the appointment. We, I got it done. It was excruciating. But also I, I do commend having mom as an example because I feel like if you’ve seen somebody go through so many major surgeries, you’re oh, I can get through that.
[00:14:01] I think not seeing anybody go through that or having any part in hospitals or medical care as a family member it does open a lot of doors to a positive mindset of what can go forward. And that’s kind of, that’s kind of where I was at and I had to recover with a 1-year-old. It was interesting and and exciting and hard.
[00:14:30] I had a different type of mastectomy than kathryn had I had a mastectomy where my implants are over my packs and hers are under, so our surgeries are all a little different. I think actually all four of our US have had a different type of mastectomy. So there’s really so many ways that women can go and I think that is.
[00:14:52] The one empowering part of the process. You have a lot of different options to go with your lifestyle. Not Mom did it.
[00:15:00] Vicki: I didn’t have that choice.
[00:15:01] Christine: No, you didn’t. But now you’ve had a co a couple revisions and you know, it’s been different for you. Right. But yeah that’s a little about my story.
[00:15:12] Kathryn: I’ll say too before Cara goes, I think, when you speak to people about getting a double mastectomy, and Christine and Cara, I don’t know if this is more common for you because you didn’t have the cancer diagnosis, but so many people think of it as a boob job. Like what are you going to get? What do you think they’re going to look like?
[00:15:31] And the reality of what you end up with after a mastectomy compared to what you had before is not a boob job. I think a lot of people like confuse what it actually is. You scrape every piece of tissue out and all you’re left with is the thin layer of skin. And if you’re lucky, you can spare your nipples.
[00:15:57] And a lot of people can’t, most of us did. But you no longer have any feeling in your breasts or your nipple. And oftentimes the first surgery doesn’t go that well. If you’re a breast cancer patient and have to do chemo after I needed, like these horrible plastic expanders in my chest for nine months.
[00:16:21] Christine, I know you had a couple, not difficulties, but you’re not totally satisfied with the end product.
[00:16:28] Christine: And I’ll have to have a revision surgery, but yeah, it is it’s a new level of getting to know your body when you’ve known your body for 30 something years and it’s very, it’s a little, yeah, it’s a little, impostery, if you will.
[00:16:45] Kathryn: Yeah. And then Cara, I’ll pass it to you because you have a whole other story.
[00:16:50] Cara: Yeah. I’m in the thick of it. I guess with my double mastectomy preventative process I had mine in April, which was only a few months ago. And I did a a different type of reconstruction a deep flap reconstruction where they took they basically cut me open in my stomach area and took that section of fat to repurpose, to create the new breasts.
[00:17:23] So I have no implants. I am like repurposing body fat for my implants. And it was I chose that route kind of just to avoid any foreign objects in my body and keep it as natural as possible. And in the end it was supposed to be, it’s kind of supposed to be less surgeries down the road. Implants you technically should consider getting replaced every 15 years or so.
[00:17:56] I’m good to go from here on out. That being said, I do have a revision surgery scheduled for tomorrow. The first surgery is kind of what Kathryn described. Scraping everything out, changing my body, getting me out the door. Can’t without any more breast cells. This one is a little bit more of a beautifying process.
[00:18:19] To kind of assist with some areas that just need a little bit more love, need a little bit more fat, moved around to look natural. So I’m doing that tomorrow. And then fingers crossed, I should be done with any type of reconstruction for the rest of my life if I’d like to be. Yay. Yay.
[00:18:48] Kathryn: Yay.
[00:18:49] Go Cara. Go. I guess question for you, Cara, that luckily Christine and I don’t have to deal with, obviously right now you are dating or single. We have husbands that just have to love us for who we are, but does that present any anxiety to you?
[00:19:12] Cara: Yeah, I mean, dating is weird and awkward for anyone.
[00:19:18] And then add this conversation. You have to have, usually you’d like to do it before intimacy to say, Hey, my body’s a little different. FYI. And then it’s when do you have that conversation? Do you, and if you do it too early, does it sound like you’re oversharing? Or telling them this big thing and when it really, I’m just trying to give them an FYI or do you just kind of spring it on someone and hope they’re not kind of freaked out, that you look a little different than they expected?
[00:19:56] So yeah, I mean, intimacy’s already awkward. Add another layer. You kind of in an ideal world, you would just be worrying about normal things, but there’s kind of an added layer there. Kind of just have to go with it, use humor, and yeah. And hope for the best. And anyone who’s weird about it, I probably shouldn’t be dating anyways.
[00:20:23] Vicki: That’s absolutely correct. I would just like to bring up the fact that I had a lot of guilt when I found out that my daughter’s all carried the BRCA1 gene. I knew it wasn’t my fault per se, but I still felt this horrible sense of guilt that my daughters were going to have to go through what I went through.
[00:20:44] And it was really hard when I found out that Kathryn had breast cancer and it was probably one of the hardest days of my life. So I’m so happy that she’s okay and that Christine was so brave to go with she did. And that Cara is going to be so brave tomorrow. I’m sorry I’m not going to be there.
[00:21:04] But I know Christine’s going to take good care of you. But I just love these girls so much and I’m so proud of that. They have gone through what they, I’m sorry that they had to go through what they did. It’s my grandfather’s fault. He was an Ashkenazi Jew and that’s where we got the genes from and but today we’re all fine.
[00:21:29] We’re all healthy and I have three beautiful grandchildren and I do worry about Christine’s two daughters. Whether they’re going to be carriers, and that’s something we’ll have to all think about down the line. Christine, what do you think about that?
[00:21:45] Christine: That is something that weighs on me and it didn’t until Savannah started getting a little bigger and she started kind of noticing that I’m just like asking me questions about my boobs.
[00:21:56] I have one that is a little more ripy and disformed than the other. So she naturally, she’s… children are some of the most honest books you can get when it comes to people, so that if there’s something wrong with you, they’re going to point it out. And I ha I, I tell her that, you know, mommy’s.
[00:22:17] Mommies boobies were, could have been sick and I had to get rid of them and get new, healthy ones. And that’s kind of what I frame it as to her. And I think obviously there’s going to come a time where we’ll have to talk about that with both of them. And I think I just want to cross that bridge as it comes.
[00:22:35] But I’m… I would rather them have more information than less, sooner than later, if that makes sense. So they can be aware of all of the possibilities for themselves and make a good plan. Good they have being.
[00:22:52] Kathryn: I think we’re lucky that genetic testing is so easy, and that was something that I didn’t really realize until we went to go get it.
[00:23:01] I think cara, we went at the same day, I believe at the same time. And your insurance covered it in full and mine didn’t, but it was only $50 or something like that. And we got the results about a week later. So you so choose to want to know the access is there. Because I had to go through IVF, chemo has made me infertile.
[00:23:27] All of my embryos have also received genetic testing for BRCA, so you can test as early as embryo formation. And so I have one son now was able to go through IVF to have him a year and a half ago, and we do know that he has the mutation. So we’ll have a plan. Men still can get breast cancer even though the risk is much less.
[00:23:50] But he can then pass it on to his daughter. So we’ll just have to educate kind of the family line. I did another round of egg retrieval last year and luckily we got a couple embryos that don’t have it. So we had, I think one strong one out of about nine or 10 that we’ve received that is BRCA free.
[00:24:11] So that is really exciting. But I think knowledge is power and as much as we can do to just educate and prevent. And I’m sure we’ll all have opinions about aggressive prevention, but it’s their bodies and I think will be their choice on how they decide to proceed. I think one thing too, we were so lucky for it’s having to do three mastectomies in, maybe it was two years isn’t great, but we all saw what the other person had to go through.
[00:24:44] Worst case scenario, you can have a bad reaction to your pain medications. Like, this is how you need to do your drains. Here’s the pillows you need. We passed around like a wedge pillow, two underarm pillows. We passed around like zipper jack, it’s drain holders. And so there was a sad box of mastectomy here that went from house to house.
[00:25:07] And Christine, I’m pretty sure you put it in the alley.
[00:25:10] Christine: I got rid of it. I got rid of it. Or maybe..
[00:25:14] Cara: No it’s in my closet at mom and dad’s. because I just picked through it yesterday because I had to get those open front clasping bras back out for me for the next few weeks. So it’s sad box is still largely alive.
[00:25:27] Vicki: Oh, no, Julie would say, oh no.
[00:25:32] Adam Walker: It’s been amazing to hear your stories and for you to just be, you know, so open and so sharing with us for on this episode. I really appreciate it. I did have sort of one final question for you and that is, you know what’s kept you centered, what’s kept you sort of connected with so many unknowns that you’ve had to kind of wage your way and find your way through?
[00:26:00] Kathryn: I think for me, just the belief that, again, this is temporary and I’ve seen so many women come out on top when they catch things early, and so I think just knowing that you need to be an advocate of your health. And how to do that or if you don’t know how, like who to ask. I think my mom, we’ve all seen her with nurses and doctors.
[00:26:23] She’s extremely aggressive and borderline no, we’ll just say extremely aggressive, but in a good way. But like seeing how she advocates for what she needs and doesn’t just listen and knows her body, I think has led me to be more like positively aggressive when it comes to my health. And I know if I know what’s right and can push for that I’ll be okay.
[00:26:53] Vicki: And it’s important because I, unfortunately, I’ve had a lot of experience so with medical situations. And I do want to say, there’s one thing I didn’t bring up in the beginning is that both my mother and my aunt had not only my mother died of breast, lung brain cancer, but her sister did. And the fact that they both died and we’re all here to talk about it and to share our information with everybody who’s listening, I think is amazing Progress in, in the, that, in advancements of breast cancer.
[00:27:29] So.
[00:27:30] Kathryn: And we all do a good job at being there for each other and. Being there for a crying shoulder, but also keeping the mood light. I think that the experience is hard, but knowing you don’t have to go through it alone and you have a lot of people that understand what you’ve been through, is very comforting.
[00:27:49] Adam Walker: Yeah. Yeah. It’s beautiful. That’s beautiful. Well ladies I really appreciate you sharing your stories. Appreciate you just allowing us to listen in on your conversation today, and thank you for joining us on the show today.
[00:28:01] Kathryn: Thank you so much. Thank you.
[00:28:07] Adam Walker: Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit Real Pink.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 adam j walker.com.