Her Story: Ali Bartman on Surviving Breast Cancer
The Seam founder, Amy Cohen Epstein, sits down with her close friend, teacher, and breast cancer survivor, Ali Bartman to talk about her unique experience, risk, survival, and the importance of “knowing your normal.”
Amy Cohen: Ali Bartman, I am very excited to be interviewing you today. I know you well, and I know your whole family. But I'm looking forward to interviewing you in this setting, one on one, and to be able to hear your story. It's an interesting, intricate one — a little different than some other women's breast cancer stories. It's very educational in many ways and for many reasons. What’s your family history with breast cancer?
Ali: So, my husband and I got married in November of 1989. When we got back from our honeymoon, my mom came over with my dad to our apartment and told us that she'd just been diagnosed with breast cancer. So that was a shock. It was a long time ago, 20 years ago. And she had a lumpectomy and they did chemo “as an insurance policy.” That’s what they told her.
Amy Cohen: I have to stop you, did they use the words, insurance policy?
Ali: Yeah.
Amy Cohen: Did the doctor use the words or did your parents tell you those words for you?
Ali: That's what my mom used, but I think the oncologist at the time had explained it that way. When you do a lumpectomy, it's localized, when you do chemotherapy, it's systemic, so it goes through your entire system. So they looked at it as an opportunity to get any of the traces that were left after the lumpectomy.
Amy Cohen: It's funny, I mean, it's not funny, but when my sister and I came home from soccer practice and we sat down in my dad's study — I can picture the whole thing so clearly, January, 1993 — my dad sat us down and said, "Your mom's in the hospital. She's just had a hysterectomy. They found ovarian cancer, but they've taken it all out. She's going to have chemotherapy as an insurance policy." It's one of those phrases that it's burned into my brain.
Ali: I think that's how they put it to her. She's now had two different kinds of breast cancer, but I think, at that time, that was what they thought — that the lumpectomy took care of it and the chemo was just an insurance policy to clean up if there was anything else left. And she recovered and I got involved in a couple of different breast cancer runs. I did the Avon, when they used to have the three day and you walked from Santa Barbara all the way back to LA. I did that a couple times, we did the Revlon, and it was just something that was on my radar.
Until a few years later, I found a lump myself and I had gone to the doctor and they ended up taking it out surgically because it just kept growing. It was benign, but, from then on, I was getting checked.
Amy Cohen: How old were you?
Ali: I was probably in my late 20s.
Amy Cohen: And you were doing regular self-breast exams?
Ali: I was doing regular self-breast exams just because it was in the age where they started hanging the things in the shower at the sororities — how to do your own breast exam. It was the time when self-breast exams were the thing to do. And because of my mom, I started doing them anyway.
So I was very aware of my body and what was happening in my breasts. I also knew that I had very dense breasts, so it made it more challenging to find certain things. Then I started getting mammograms when I was 35 and they were always clear. There was one time where they found some calcification, but we kept monitoring it and it was fine. I had a couple MRIs, everything was good. But I was on top of it. I was going every six months.
And then they started doing something called the ABUS, which is the automated breast ultrasound, which was the new wave of technology for looking at breast issue. I had one in June of 2018 and it was clear, which was great. Everything was fine until September and that's when everything started going down-hill.
Amy Cohen: Did your mom have genetic testing that you knew of at this point?
Ali: So my mom ended up having breast cancer again, about 10 years after her first breast cancer, and it was a different kind of breast cancer. This was something that I learned when I was diagnosed: there are different types of breast cancer. There are different variations and combinations of estrogen and progesterone... So I didn't really understand all that, but my mom was diagnosed with another type of breast cancer, 10 years after her first one. So at that point she had had a double mastectomy because she's like, "I'm done. I don't want to worry about this. I am finished with worrying about this."
So at that time, after she was recovering — I think it was probably right after — she did get genetic testing and she was negative. At that point in time, you could just test for a BRCA1 and BRCA2. So, for me, there was a lot of debate — with girlfriends, with doctors — whether I should have genetic testing. For me, it was really a struggle just because I didn't know what I would do with the information if I tested positive. I wasn't sure whether I'd have a prophylactic double mastectomy.
So, in September of 2018, I found a lump. It was at the beginning of the month, and I was like, "Oh, it's probably a cyst. It'll go away." And it didn't go away and then I forgot about it for a few weeks and I checked again and I thought, "Oh, it's a little bit bigger." And that's when everything started; it was just one moment where you're just like, "Okay, this is not where I expected to be." But I went to the doctor and I got really lucky because I was able to get a biopsy the next day, but you have to wait days for the results.
And then I had a biopsy on Friday and Monday, I was diagnosed. I got a phone call and I was driving and that's how I found out, by myself in a car — which was awful. But in the scheme of things, you take it and you deal with what you have.
Amy Cohen: That's amazing. I'm sure, like I said earlier, it's burned in your brain.
Ali: It's something I'll never forget. I was supposed to be going over to my sister in laws and I never made it there. I pulled through the light, I pulled over to the first street, and I just sat there. I don't remember driving myself back home. That's the crazy thing. Somehow I ended up back in my driveway, thank God. It's something you never forget, unfortunately.
Amy Cohen: And what was your family's reaction?
Ali: I think, for my husband, it was more disbelief. I think it was disbelief at first and then it was like, "Okay, we're just going to put our nose to the grindstone. We're going to plow through this and we're going to get through it." My mom, it broke her heart. My dad was a wreck. My dad wouldn't speak to me for two weeks because he just couldn't bring himself to have a normal conversation until I called him and I said, "Look." I said, "It is a crappy situation." I said, "But I need you." I said, "And your grandchildren need you more importantly." I said, "But I need you to be able to pull yourself together enough to be at my house."
Because he would come over every Sunday to make breakfast with them and hang out with them. I'm like, "You need to pull yourself together and come into my house and be normal and be happy and be positive and be there for your grandchildren. That's it, end of story." My sister in law was a whirlwind to begin with, but she rallied the troops around me and was there for me every step of the way. And my mother-in-law as well. I'm the type of person who does everything herself, I don't ask people for help. I have a set plan in my mind, execute it myself. I really don't ask for help and this was the first time in my life where I was like, "I need to ask for help. I need to let people help me."
Amy Cohen: What did you let them help you with?
Ali: My sister in law organized a food train, which was a point of contention with my husband for a long time. But what both of us found throughout the process was that — I had immunotherapy for six weeks and then I had chemo for five months — you don't want to think about food when you're going through chemo at all. It just has no appeal, nor do you want to think about how to plan a meal for your family.
And, for him, he was still working and he would come home and take over the house. It took so much off our plate, so that he didn't have to worry about making sure that dinner was on the table. It was amazing because food would just show up. And also, it was important because it provided the other people with a way to help us without being too invasive.
Amy Cohen: I think it's so brilliant. We have a very close friend whose daughter was just diagnosed with leukemia and they don't live here. They live out of the state and our friend organized a meal train for them. They gave us a list of restaurants and I just did it on Postmates for them. It’s just one of those wonderful things that technology has helped us with. And also, you're right, I mean, nobody knows what to say, nobody knows what to do. The worst thing you can do is do nothing because that's not the right thing. People, for 20 years have asked me, "What do I say?"
Ali: I mean, it worked twofold. I was talking to another friend who had been diagnosed with breast cancer, I think five years before me, and we were talking about meal trains. And she told me, "The one thing I learned was be as specific as you can be. Food shows up." She's like, "You want to make sure that your kids eat." And it was so funny because I was having an immunotherapy treatment, and we were sitting in the waiting room where they do all the chemo and transfusions and everything, and she and I were just arguing over restaurants and food. And the guy across the waiting room from us, who was waiting for his chemo just sat there and he started laughing.
I mean, it was something that just seems so stupid, but in the end, I think it was also for my kids. They felt like people were there and people were thinking of them and it made a difference for them. When you're going through this and you have kids, it's like trying to keep them positive and keep them going, just as much as you're trying to keep yourself going. It's hard to balance everybody at the same time.
Amy Cohen: And fighting for your life. I mean, all of it.
Ali:Exactly, exactly.
Amy Cohen: Tell us about the kind of cancer that you had and how important it was that you diagnosed it yourself. The timing was so crucial.
Ali: So I was diagnosed with triple negative breast cancer, which I knew nothing about before. I knew a little bit about before because, oddly enough, I had a friend from my graduating high school class who was diagnosed with it two years ago. It has no hormonal component, which means that they have different types of hormones that they can give you or, there's treatments for it. But for triple-negative, there is no treatment. Right now, your best defense is chemo and surgically removing it. It is very aggressive and moves very fast. So I found it in September and my next mammogram wasn't until January. Had I waited until my next mammogram, it would have been a whole different story.
It would have been a completely different situation because of how fast-moving and how aggressive it was. And, because of that, the treatment needs to be fast and it needs to be aggressive. I participated in a trial for immunotherapy, which has become a newer thing for a lot of different types of cancers. I had that for six weeks and then I started five months of chemo, which was a lot. But I was lucky, that's all. I mean, because I found it myself and because I knew what my breast felt like. I knew what was normal and what was not normal, and, because I was on top of it, I was lucky.
Amy Cohen: Which is so incredible. I mean, it's what we preach and what I've been saying for 20 years: Women have to know their normal. You have to know what your baseline is. And it’s important to find a doctor that you trust, that you love, that you know has taken the time to know you and to know your body and to know what your normal is. But you still can't completely outsource that.
I did an interview last week with a woman who had survived two bouts of ovarian cancer. And we talked about how, similarly to my mom, she had major issues with her bowels leading up to her second bout of ovarian cancer. She had major constipation that lasted for months and months; my mom had diarrhea for over a year leading up to her ovarian cancer diagnosis. And both my mom and this gal, didn't put two and two together. This was something to raise an alarm. Instead, it just was ignored and attributed to stress and minor changes and issues because of their age, their bodies, and whatever was going on in their lives.
This is why your breast cancer story is so important to tell. I think it's important for men to hear because it's not only inspiring, but it's important for the support side of it. But it's also something that women need to hear because we have to understand what it means and what it means to be educated and to be vigilant.
Ali: Right. It was interesting because when I was diagnosed, my daughter asked me, "Is this something I have to worry about?" And I said, "Look." I said, "It's something that you're going to have to be aware of. And it's something that when you're younger, you're just going to have to follow and monitor and know your body." I said, "But you should be knowing your body anyway." I was negative for any genetic link; I was negative for BRCA. I was negative for all of that.
Amy Cohen: I mean, 10% of women's cancers are due to genetic mutations. It's not all of them by any means — 10 to 15%. It certainly changes risk, but, if you don't have a genetic mutation, it doesn't mean you're in the clear. And I think that's a whole other conversation that we can get into: What age do we talk to our kids about this? And at what age do we really have the big, deep, deep conversations?
Ali:Right. Exactly.
Amy Cohen: Like I said, I think a lot of people feel like we have it beat and that's a shame because it's still there and we won't have a beat. If we don't continue to talk about it, it won't be beat. It's going to be there and it's always going to be there, and the tools are always going to be necessary.
Editor’s Note: This interview has been edited for length and clarity. To listen to the full version, please visit The Seam Podcast.