Lisa S.

Age at interview: 56
Outline:

Lisa S’ mother and aunt both had breast cancer. Three years ago, at age 53, Lisa S tested positive for a mutation on her BRCA2 gene and had a prophylactic oophorectomy shortly thereafter. Two years later, she was diagnosed with ductal carcinoma in situ (DCIS) breast cancer. She had a double mastectomy and reconstruction, noting she had not fully understood how much her BRCA genetic mutation had increased her for breast cancer risk. She worries about risks for herself and the next generation. Lisa S credits her recovery and resilience to a peer counselor for Ashkenazi women with BRCA gene mutations, great friends, “embracing the new,” and to awareness.

Background:

Lisa S. is a single White, Ashkenazi Jewish woman, who lives alone in a large Western city.

Cancer-Related Experience: Cancer

Type of Inherited Risk: Identified breast cancer mutation

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Lisa S suspected she might be at risk for a breast cancer gene mutation. Both her mother and aunt had had breast cancer. After learning that Ashkenazi Jews are at increased risk, Lisa S was tested for a BRCA gene mutation at the clinic where she worked. Healthy and in her early 50s, she assumed she’d be fine. But when she looked into her chart while on shift, she learned she had a BRCA2 gene mutation. “It was a bad day,” she recalls. Her meeting with the genetic counselor left her believing that removing her ovaries and aggressive breast monitoring would keep her safe. Being post-menopausal, removing her “no-longer needed ovaries” was easy.

Two years later, while at work Lisa S received a “shocking phone call.” The nurse navigator not only said that a routine mammogram showed ductal carcinoma in situ (DCIS, a non-invasive cancer), but immediately tried to schedule a bilateral mastectomy consultation with the surgeon. Lisa S recalls saying, “that's crazy!” But the navigator replied that with a BRCA gene mutation, she had an extremely high risk of recurrence. Lisa S, who worked in the next building, notes the navigator could have said, “Is this a good time? Why don't you come in so we can chat?” Her message to providers is to deliver news in a sensitive manner and to make sure the person is ready to absorb information.

Despite the shabby delivery, Lisa S realized that BRCA mutations are “a game changer.” DCIS for most women means a lumpectomy but, she says, “with BRCA you have to consider bigger options.” Contemplating a double mastectomy was frightening. Peer counseling through a local Ashkenazi Jewish BRCA advocacy group was really helpful. She could lay bare her fears, ask questions, and prepare for her mastectomy and reconstruction. Over eight weekly “group hug” sessions, Lisa S came to accept that, “mourning the things that you lost is just a bad place to be.” She has recovered from her surgeries and likes the look of her new body. As her first breast cancer anniversary approaches, Lisa S feels lucky. Her cancer was not invasive; she had good care; her insurance was fine; and she has resumed the things she liked to do. But, given her family and genetic risk, she will always worry.

Lisa S has great hopes that research on immunology and personalized medicine might treat DCIS for people with a BRCA gene mutation “with something less than a double mastectomy.” Given her worries about recurrence and the risks for the next generation in her family. She started an online “safe room” for BRCA survivors and plans to engage with the advocacy groups that helped her so much.

 

After her BRCA testing, Lisa S. didn’t have the information she needed to make decisions.

After her BRCA testing, Lisa S. didn’t have the information she needed to make decisions.

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And I knew that there was a chance of some gene that can be dispose me to having cancer called BRCA. So I spoke with my doctor about that and I said, you know, “Should I get tested?” This is about three, no this is five years ago. And I said, “Should I get tested?” And she said, ‘Well, why would you want to do that?” Well, gosh darn, that was pretty unusual because I worked in a clinic and I was surprised by her response. But I thought, “Well OK if I don’t really have to do it. Then I guess I won’t.” And so I didn’t and I waited. And then there was an article in the New York Times and it was probably the Angelina Jolie.
Oh yeah.
I think it was that. Or maybe before. There was also one about Ashkenazi Jews and it was talking about how it’s 1 in 40 for BRCA, to be positive for the gene. So I decided to ask her again if she would put me in for genetics and I decided to go test, thinking, of course, I was invulnerable. I'm healthy. I'm not going to have any problems. This is nothing. My mother didn't know if she was positive or negative because there was no test. So I'm just going to do it because, you know, just get it out of the way. I'm going to be negative anyway, you know. So I went, and I took the test. And lo and behold, I found out at work, because you can look in your own chart. And I was on shift, and I found out, and it says “Positive.” And I started to cry, not really understanding enough more than I knew that I would have to deal with stuff. Ugh, it was a bad day. So I spoke with a geneticist. And she gave me information. And I can tell you later on how I felt about that information, which I didn't think it was enough information. I didn't really understand what I received. I didn't know what I needed to do.
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But the geneticist didn't really explain to me what I should do about here, which left me with a whole lot of, “Oh, well, I guess if, I should-- I'll just do nothing because, you know, I’ll, that's fine. I just took my ovaries out I should be safe.” I didn't know. I didn't know. Gosh, I didn't know. Or maybe, I don't know. I felt like I should do nothing, which is what I did. I monitored, which is fine. I monitored until the day that I went for a mammogram last April, and I was told I had DCIS, which is non-invasive at that time. But they never know until they go in there, and they do the surgery. 50% of the time, it could be invasive. And at that point, it was like, “Oh, I guess I have choices to make.” And I'll tell you about that but. And so I did a double mastectomy.

 

Lisa S.’s doctor is unenthusiastic when she asks about testing.

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Lisa S.’s doctor is unenthusiastic when she asks about testing.

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I spoke with my doctor about that and I said, you know, “Should I get tested?” And she said, ‘Well, why would you want to do that?” Well, gosh darn, that was pretty unusual because I worked in a clinic and I was surprised by her response. But I thought, “Well OK if I don’t really have to do it. Then I guess I won’t.”

 

Lisa S. describes a different expectation.

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Lisa S. describes a different expectation.

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I’m just get[ting] it out of the way. I’m going to be negative anyway, you know.

 

Lisa S., who expected to test negative, looked up her results at work.

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Lisa S., who expected to test negative, looked up her results at work.

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And lo and behold, I found out at work, because you can look in your own chart. And I was on shift, and I found out, and it says “Positive.” And I started to cry, not really understanding enough more than I knew that I would have to deal with stuff. Ugh, it was a bad day.

 

It took Lisa S. a long time to absorb the fact that being BRCA1+ meant high risk of breast cancer even after having her ovaries removed.

It took Lisa S. a long time to absorb the fact that being BRCA1+ meant high risk of breast cancer even after having her ovaries removed.

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The geneticist, three years ago, you know, they give you a whole lot of information-- blah, blah, blah, blah. And when it came to the breast, she says, “Well, we can”-- right away, she says, “After the ovaries,” she said, “Well, after we take out your ovaries,” she said, “We can do a, you know, mastectomy and take off your breasts or-” I'm like, “no, they're fine. I don't really understand why you'd want to do that.” And I don't think I really understood the significance because I know that a lot of younger people do that. And I don't think I understood that. I was lucky. It came back at DCIS, which means it was stage zero. It could have come back as stage two, or stage three, or invasive.
--
You know, it's just a game changer, that BRCA's a game changer. And I didn't realize that. I can't figure out, I just can't figure out why I didn't know that. I live in a major city, right? And I worked at the time at [university name]. And they had a great genetics center. I think they gave me information. And they were like, “Well, you have a choice of removing your breasts or monitoring them.” I'm like, “Oh, no, no, no, I don't see why I would need to remove them.” And I don't think I got-- I think they were like, “OK.” I don't think there was enough pushback. Like, let me tell you why you might want to.

 

Lisa S. talks about how knowing her BRCA+ status affected her decisions.

Lisa S. talks about how knowing her BRCA+ status affected her decisions.

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But once I got the DCIS, I realized I needed people who had gone through breast cancer as well as having the BRCA gene because that's a whole other element. Knowing you've got this hereditary gene means that your chances of getting breast cancer are I think between 60 and 80. And you have different choices once you come up with DCIS. DCIS, for most of the population, could maybe mean a lumpectomy because the abnormal cells are non-invasive. They're in situ. They're in one place. They're just abnormal. So if you do a lumpectomy, and you get clear margins, boom, you're on your way out the door. But with BRCA, because you have between a 60% and 80% chance of getting breast cancer, you have to consider bigger options, which I didn't understand, when I first learned about BRCA. I needed community to make me figure this out. And then I wanted-- the Komen community was less important to me than the BRCA community. I think because, again, if I was just a regular person, who had discovered breast cancer, I could have just done a lumpectomy. But you have that BRCA, and you've got to speak with people. You've got to figure out, “Well, I had it in one. Do I do it in the other?” “What are my choices? What are my possibilities?” And you just feel-- you feel a little bit-- I don't mean damned, but you just feel like, “I eat right. I exercise. I'm thin. I'm all those things.” But yet, still, I have to deal with this gene that makes me choose options that most people who would have DCIS would just choose a lumpectomy. But I got to go the full meal deal. I got to get rid of them all. And I think having that support network makes you feel like, “Oh, I'm not alone. There's other people who had to decide this before me. They had to figure this out. I need a group. I need a hug.” I needed that hug, ooh.

 

For Lisa S., the decision to keep her breasts but have her fallopian tubes and ovaries removed was based largely on her perception of how effective different types of screening are.

For Lisa S., the decision to keep her breasts but have her fallopian tubes and ovaries removed was based largely on her perception of how effective different types of screening are.

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Or what-- the ovaries are like, the way I like to describe it, they're like meatballs, right? With the spaghetti sauce and spaghetti. We don't have, in this day and age, a very good test for ovarian cancer. You cannot see it. You can do a CT scan, and you still can't see very well. And so the reason why we remove the ovaries is because there isn't a good test. And when they do have good test, it's already too far gone. Once they can see it, it's too far gone. So at this day and age, the young girls have to remove it. Why? Because we don't have a good enough test. That's the reason why they have to do it. That's the only reason. They don't have a good enough test. That's crazy. Isn't that crazy? That's just crazy. And the reason why I kept my breasts originally, first of all, I didn't really understand enough that keeping them could have made me get invasive cancer. Well, it could have been that way. But I just thought, “Oh, we have good tests,” and we do. We have mammograms, and we have MRIs. So you're getting tested every six months, and they're looking at the breasts. And so they can see changes in six months’ time. Within six months’ time, nothing should change that much, right? Not always the case, in fact, it's not the case. But there's a test at least. There's, there’s measures, but not for the ovaries. And so I think, the BRCA, the community of people made me realize, again, that I was lucky and that there is a world of people that have to make a big, big, big decisions.

 

Lisa S. discusses receiving her diagnosis over the phone.

Lisa S. discusses receiving her diagnosis over the phone.

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And so because it wasn't through my doctor, the breast navigator called me afterwards. And she didn’t say to me, “Is this a good time?” Or, ‘Why don't you come in so we can chat.” She just says, “I have some news for you.” And I'm like, ‘Oh, I get that. OK.” I was like, literally, right outside her door because she worked in the next building over from where I did, though she wasn't there that day. And she says, “Well, I have some news for you.” She says, you know, “It looks like, it's DCIS. I'm like, “What's DCIS?” But I was sitting there during lunch hour. I wasn't expecting the news. It wasn't during an office visit. They didn't say come in for a visit, where I could have been relaxed, you know or. It was on the phone during lunch hour.
I think it makes no sense.
Which makes no sense. Yeah, I don't understand why she couldn't have said, “Hey, do you have time for an office visit, or a phone visit, or an office visit? Why don't you come in?” You know, so she gave me the news right there. And the funny thing was she says, “It's DCIS. And I said, “Well, what's DCIS?” She says, “It's ductal cell in situ.” I said, “In situ,” I remember my Latin. I said, “That means in place,” because it's also an architecture term. I said “It's in place.” I said, “It means it hasn't spread, right?” She says, “No, not at this point. It hasn't spread.” She says, “But normally, what they do is when they do the surgery, and they go in there, 50% of the times it has.” I wanted to say to her, “Can you not tell me that? Why tell me about a possibility that hasn't occurred.” That surprised me too. And she says, “You have BRCA.” She says, “They will probably recommend a mastectomy.” I said, “Can we not talk about that?” I said, “You're just giving me the news. You don't have to tell me that yet.” I said, “No, no, no, I'm not going to consider that.” I said, “I'm not going to consider that.” I said, “I don't know what you're talking about. I don't know what you're talking about. I got to go.” Yeah.
That's an odd way to do a sensitive service.
Yeah. When I look back on it, I think the reason why they did it is because I suppose they didn't want me to wait to make an appointment. Like, oh, well, I'm available next Wednesday. You know, they wanted to tell me the information because then, after that, she says, “I'd like to schedule you an appointment to see the surgeon.” I'm like, “A surgeon?” I'm thinking, well, you know, to a-- what's that phrase? To a nail, a hammer-- or to a hammer is a--
Oh, right, yeah. If you-- right, yeah.
Right. I'm like, I said, “A surgeon?” I said, “Can't I see, you know, an oncologist? I mean like, is a surgeon the thing?” She says, “Well, I think they might want to do surgery.” I said, “Well, you might think so. But, you know, a surgeon's going to want to do surgery.” I said, “That limits my options.” So I felt moved into that position. But I also knew I had BRCA. And I also knew that-- I knew the statistics at that point. I don't know how I knew that. But I already knew that it was higher. But I don't remember when I found out that I was BRCA, I don't remember getting a whole lot of information about it either.

 

Lisa S. had to make a quick decision about what to share when she ran into someone at a party.

Lisa S. had to make a quick decision about what to share when she ran into someone at a party.

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It's funny because cause I went to a party two or three weeks ago. And I've known these people for like 13, 15 years. And I saw a person I hadn't seen in about three years.
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But she said, “You look fabulous.” I said, “Yeah,” I decided I didn't want to tell her anything. It was like, ah I don't want to bring it up. I don't want to make the thing about me, whatever it was. You know because. I said “I’ve been working out,” which I've always been working out. But I'm like, ‘Oh, I've been working out.” I said “I've been doing some new exercises, you know, for my core.” She's like, “Well, you look really great.” She kept on going on about it. I said, “Well.” I said, ‘Actually.” I said, “To tell you the truth.” I said, “I had a double mastectomy." I said, “I'm a little smaller than I used to be. And so I think I'm just more in proportion than I was.” And she's like, ‘Oh!” I said, ‘No.” I said, “It's all good.” I said, “But you’re, what you're probably seeing is I'm more in proportion, and so I look slimmer.” I said, ‘Because I'm just, I'm, I’m smaller.” So, I felt like, all right. All right. I'm out. I'm being outed. I'll, I’ll just do it, you know?

 

Lisa S. describes how she made an unexpected connection with a bus driver who had also had breast cancer.

Lisa S. describes how she made an unexpected connection with a bus driver who had also had breast cancer.

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I was on the bus two weeks ago. And a lot of people remark about my hair. So the bus driver, she says, “I love your hair.” I said, ‘You know what?” I said, “I really needed to hear that today.” I said, “Thank you so much.” I said, “I was feeling a little bit weird,” something, not weird, but just like-- I said you know, “I recently had breast cancer. And I just needed to hear that.” She said, “Ah.” She said, “Me too.” And she looked great. I said, “What'd you have?” She said, “I had the DIEP.” And I said, “You look fabulous.” And I said to her, “Can I hug you?” I said, “Can I hug you?” She's the bus driver.
That's funny.
You know? But you feel this sisterhood. You feel like, oh my God, we've both been through, ugh. I don't know what your-- what you've been through, but we all know, this is just not easy.

 

Lisa S. wants to work with cancer patients.

Lisa S. wants to work with cancer patients.

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I work in a medical clinic. And I work in family practice. But I really would like to work in oncology. And I got the phone call today to interview with oncology. So I'd like to work more with cancer patients because I now have an understanding. It's not that. It's not the understanding that I've had. I would like to help people through their pain. I'd like to just, like I did with the bus driver. I'd like to take their hand or on the shoulder and say, “We're here for you. We're here for you.” And I can't necessarily do that in family practice. I do that occasionally when someone comes in and I can tell they're in pain. I said, I said, “We're here. We're here.” But I'd like to do that more on a daily basis. So yeah, it has changed how I feel.
Yes. Yeah. Giving it back, paying it forward.
Yeah. Yeah, giving it back, paying it forward. Definitely. That's definitely it. But I have that from my background too because I worked at an underserved community clinic, and where we saw people that people didn't want to see. And I miss that population. I miss that feeling of, we are listening to you. You are being heard. And now that I've got this experience with cancer, I'd like to be part of that. Yeah.

 

Lisa S. says it can be easy to misunderstand the advantages of prophylactic mastectomy.

Lisa S. says it can be easy to misunderstand the advantages of prophylactic mastectomy.

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The geneticist, three years ago, you know, they give you a whole lot of information-- blah, blah, blah, blah. And when it came to the breast, she says, “Well, we can”-- right away, she says, “After the ovaries,” she said, “Well, after we take out your ovaries,” she said, “We can do a, you know, mastectomy and take off your breasts or-” I'm like, no, they're fine. I don't really understand why you'd want to do that. And I don't think I really understood the significance because I know that a lot of younger people do that. And I don't think I understood that. I was lucky. It came back at DCIS, which means it was stage zero. It could have come back as stage two, or stage three, or invasive, which a lot of times, I was very-- I look at the Facebook support pages, and most of the women, it's invasive. And they do chemo and radiation. And that's why they get rid of their breasts first. I didn't have to do that. I didn't have to do the chemo and radiation.

 

Lisa S. talks about the importance of finding support from others who share a specific diagnosis of increased genetic risk.

Lisa S. talks about the importance of finding support from others who share a specific diagnosis of increased genetic risk.

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But once I got the DCIS, I realized I needed people who had gone through breast cancer as well as having the BRCA gene because that's a whole other element. Knowing you've got this hereditary gene means that your chances of getting breast cancer are I think between 60 and 80. And you have different choices once you come up with DCIS. DCIS, for most of the population, could maybe mean a lumpectomy because the abnormal cells are non-invasive. They're in situ. They're in one place. They're just abnormal. So if you do a lumpectomy, and you get clear margins, boom, you're on your way out the door. But with BRCA, because you have between a 60% and 80% chance of getting breast cancer, you have to consider bigger options, which I didn't understand, when I first learned about BRCA. I needed community to make me figure this out. And then I wanted-- the Komen community was less important to me than the BRCA community. I think because, again, if I was just a regular person, who had discovered breast cancer, I could have just done a lumpectomy. But you have that BRCA, and you've got to speak with people. You've got to figure out, “Well, I had it in one. Do I do it in the other? What are my choices? What are my possibilities?” And you just feel a little bit-- I don't mean damned, but you just feel like, “I eat right. I exercise. I'm thin. I'm all those things.” But yet, still, I have to deal with this gene that makes me choose options that most people who would have DCIS would just choose a lumpectomy. But I got to go the full meal deal. I got to get rid of them all. And I think having that support network makes you feel like, “Oh, I'm not alone. There's other people who had to decide this before me. They had to figure this out. I need a group. I need a hug.” I needed that hug, ooh

 

It’s hard to ask for something, says Lisa S., but can be easy to receive a specific offering.

It’s hard to ask for something, says Lisa S., but can be easy to receive a specific offering.

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How to do it. Well, you can always send a card or a letter. You know, that's not intrusive. Say, hey, I'm thinking of you. A card or a letter is always very wonderful, or a text, or an email. That's always won-- that's really the best. That's actually the best. I always—I less appreciated people that would ask me what can I do for you. I always appreciated more-- and that's why the meal train was great because they just came over with dinner. They didn't say what can I do for you? I’m never going to say—nothing, I'm fine. Everybody wants to be a martyr. It's very hard to ask for something. It's always easier to receive. And people with cancer always want food. Food is great. You know. Or you can always come over and say, “Hey, do you need that cat litter changed?” “Yes, I need that cat litter changed.” “Can I pick up some milk for you?” “Yes, you can pick up some milk for me.” So specifics are really important. Giving a specific. Yeah, “Do you, do you need your kids picked up from school?” “Yes, I need my kids picked up from school.”

 

Lisa S. explains why it is important to see the person in the patient.

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Lisa S. explains why it is important to see the person in the patient.

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It’s-- there has to be a meeting of the minds where it’s you and the patient are a real team. You have to know the background of that person.