Irina

Age at interview: 45
Outline:

Irina’s mother died of fallopian tube cancer. When the scientific literature finally showed a link between BRCA mutations and gynecological cancers, Irina’s insurance was willing to cover the cost of genetic testing. She tested positive for a mutation on her BRCA2 gene at age 38. At age 40, she decided to have a prophylactic oophorectomy. Given no family history of breast cancer and aggressive breast screening at a high-risk breast cancer clinic, Irina is comfortable deferring a prophylactic mastectomy and reconstruction for the time being.

Background:

Irina is a 45-year old, White, Ashkenazi Jewish woman who lives with her husband in a suburb of a Midwestern city.

Cancer-Related Experience: Elevated risk

Type of Inherited Risk: Identified breast cancer mutation

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Irina’s mother died in 2005 of fallopian tube cancer. As a scientist, Irina searched the scientific literature for a link between breast cancer genetic mutations, and ovarian and fallopian tube cancers in the Ashkenazi Jewish population. After nearly ten years, the link was finally published, and Irina tested positive for a BRCA2 gene mutation at the age of 38. She feels lucky to know about her risk, because she “can do something about it” musing, “If you have a mutation for brain cancer, … what are you going to do, take your brain out?”

She weighed the pros and cons of when to have a prophylactic oophorectomy and bilateral mastectomy with reconstruction. Irina decided at first to defer an oophorectomy to minimize the health risks of early forced menopause—heart disease, bone loss and depression. But after two years, her fears of difficult-to-detect ovarian cancer outweighed those of forced menopause and had the oophorectomy. She is relieved that hot flashes and weight gain were not what she had feared. For now, she can live with putting off the bilateral mastectomy and reconstruction surgeries, given no family history of breast cancer and aggressive screening at the high-risk clinic.

Her mother’s cancer death, combined with her own risk, motivated Irina to switch her research focus so she could contribute to the emerging science of cancer genetics. Irina has a strong support network. Her sister is a great source of support and her husband has had her back throughout the journey. When in the throes of deciding to move up her oophorectomy, her husband said, “It's much better to have menopause now than have cancer 10 years later.”

Irina praises the high quality of genetic counseling, surgical care, and frequent breast cancer screenings at her comprehensive cancer center. But she wishes her team had addressed sexuality, emphasizing this quality of life issue as a very “important part of marriage.” It took over a year for her to be referred to a post-cancer sexuality clinic located within the same center in which she received care. Despite these services all being part of a single “entity” Irina did not know such a clinic “existed” and wishes there was more “communication between them.” Irina works in health care research, and despite feeling “prepared” to interact with the medical system, still wishes health care professionals would “explain things better.” Irina felt compelled to share her story because it’s important for her to “spread the word, and to help the science” and wants others to have the opportunity to “listen to actual people.”

 

Irina had been advocating for testing for years, but wasn’t tested until NIH guidelines changed.

Irina had been advocating for testing for years, but wasn’t tested until NIH guidelines changed.

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So, I was again, looking, and I saw that. But BRCA1, BRCA2 genes are linked to breast cancer, and later they were linked to ovarian cancer, but not fallopian tube cancer. So I was talking to my doctors, and that's like almost 10 years ago now, and they all were saying, “Well, no it's not related, it's not related. We can't really test you for that,” because I was asking to be tested. And then again, with just the time and research that was published, and things that were, that became more accepted by the medical community. The new guidelines from NIH came out, I want to say 2015 or maybe 2014, where, first of all, they kind of grouped ovarian cancer and fallopian tube cancer together. Because a lot of times, doctors can't really-- they don't really know what it is exactly. It's somewhere in the area, especially if it's spread. They call it and they treat it the same, and the prognosis is very similar. So they combined them. And they also found enough links for the Ashkenazi Jewish population, that they're more likely to have that mutation. So, and I am an Ashkenazi Jew. So and that was enough, after those guidelines came out, that my doctors, “Well, OK, we're going to test you.” Well, they sent me to the genetic counselor first. And I went to the genetic counselor, and I was with a different insurance company at the time. I just feel like I’m an atypical patient, a little more knowledgeable in the area. So the genetic counselor, I don't think, was quite prepared for me. But anyway, I got tested, and I am BRCA2 positive.

 

Irina wanted to be tested based on her family history, but had to wait for medical knowledge to catch up.

Irina wanted to be tested based on her family history, but had to wait for medical knowledge to catch up.

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I was again, looking, and I saw that. But BRCA1, BRCA2 genes are linked to breast cancer, and later they were linked to ovarian cancer, but not fallopian tube cancer. So I was talking to my doctors, and that's like almost 10 years ago now, and they all were saying, “Well, no it's not related, it's not related. We can't really test you for that,” because I was asking to be tested. And then again, with just the time and research that was published, and things that were, that became more accepted by the medical community. The new guidelines from NIH came out, I want to say 2015 or maybe 2014, where, first of all, they kind of grouped ovarian cancer and fallopian tube cancer together. Because a lot of times, doctors can't really-- they don't really know what it is exactly. It's somewhere in the area, especially if it's spread. They call it and they treat it the same, and the prognosis is very similar. So they combined them. And they also found enough links for the Ashkenazi Jewish population, that they're more likely to have that mutation. So, and I am an Ashkenazi Jew. So and that was enough, after those guidelines came out, that my doctors, “Well, OK, we're going to test you.” Well, they sent me to the genetic counselor first. And I went to the genetic counselor, and I was with a different insurance company at the time. I just feel like I’m an atypical patient, a little more knowledgeable in the area. So the genetic counselor, I don't think, was quite prepared for me. But anyway, I got tested, and I am BRCA2 positive.

 

Irina says eventually science caught up with her questions about hereditary cancer.

Irina says eventually science caught up with her questions about hereditary cancer.

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Yeah, I mean, I wasn't really, but I was curious if there is any research. And at the time, there was not. Because I talked to my mom's doctors back home, and I talked to my doctors here, and they all said, “No, there is nothing that is known that connects breast, ovarian, fallopian tube cancer, well any of that.” And if it was a breast cancer, and if it was like generation to generation, even without knowing the mutation, doctors knew that they couldn't put their finger on it, but they knew there must be something that is hereditary here. So that wasn't my case, so they were, like “No, no,” but eventually the science caught up.

 

Irina talks about her sudden menopause.

Irina talks about her sudden menopause.

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You talked about delaying of, or pushing back forced menopause. So now that you've had it, has that been an issue for you?
Well, yes and no. It's been much better than I thought it would be, because I almost don't have any of the symptoms that people usually complain about like hot flashes, that kind of stuff. But my bones already show the, well, it's not osteoporosis yet, but it's pre-osteoporosis stage whatever.
Osteopenia?
Yes, exactly, that's what it is. And which, actually, ironically, I had to fight for too, for the scan, for the bone density scan. Which I did not think it would be an issue, because I wanted to have it right away so we know where I am. And so I just had it, a year and a half after surgery. So I only can assume that I didn't have it before, because I really shouldn't have. But you know, it's probably going to get worse. If, I mean I'm trying my best to like exercise and eat, and all that stuff. But yeah, mostly it’s been OK.

 

Irina switches insurance so she can receive care at a specialized center.

Irina switches insurance so she can receive care at a specialized center.

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So, my husband is a state employee, so we were kind of, with that insurance before, covered by campus insurance, and just decided to move to another one. I can't even remember why we did that originally, just something with the convenience factor. And then once I got tested, I was not having surgery there. I knew that I wanted to be connected to the campus, and all the research, and all those doctors. Yeah, so I did some research, but mostly just I knew people there, and I knew the cancer center so.
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I didn't have any issues. But I have to say, I did switch it because I wanted to go to that insurance where I am now, because I knew that was a research institution with way more experience and way more resources. And, well, the one that I had before, they don't have a cancer center. They don't have all those people who work on that particular topic with research and clinical staff. And all, so that was the main reason I did. I didn't have an issue with them. They were very good doctors. But I just felt like the network on campus is a little better suited for my desires.

 

Irina discusses coming to her first counseling session with a lot of knowledge.

Irina discusses coming to her first counseling session with a lot of knowledge.

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I don't want to be negative, because I do realize the kind of the unusual situation that I present. And my understanding is that the genetic counselor that I met originally was like fresh out of college maybe...I had like a bunch of papers printed out from PubMed...I had like questions and all that stuff, and she started with explaining to me what chromosomes are...And I’m sure that’s what you do for regular patients, so I totally understand where she was coming from. But then I told her, “Let’s not waste time on this, let’s move on to something that I want to talk about.” And she just couldn’t.

 

Irina’s husband was supportive about early menopause.

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Irina’s husband was supportive about early menopause.

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Going into menopause, it does affect our relationship in certain ways that I knew was going to happen, so I needed to make sure that he's OK with it … and he is … He is extremely supportive. … He basically says that it's much better to have menopause now than have cancer 10 years later.

 

Irina finds hope in genetically-targeted treatments for breast cancer.

Irina finds hope in genetically-targeted treatments for breast cancer.

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The woman who was diagnosed with terminal breast cancer,

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She had metastases everywhere. She like couldn't breathe. All disappeared, and it, it is experimental, and immunotherapy is not an answer to everything, and it has its side effects, and all the stuff. I understand that. But again, 20 years ago, that experimental treatment wasn't available, and she wouldn't get those two years of life, or however many years more she has. So that gives a lot of hope. And all those treatments, they just get better and better. And there is more and more that scientists find out. And moving faster to get to patients also is very encouraging. That, that gives me a lot of hope.

 

Irina wants health providers to make sure patients understand what they’ve been told before moving on.

Irina wants health providers to make sure patients understand what they’ve been told before moving on.

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I do think that health professionals need to explain things better. I can't complain about that, because I am way better prepared than your average person. But I do feel very, like when I go to like an oncologist and they like, “Well, blah, blah, blah, right?” And I feel like when I say right, I actually know what they're talking about. But most people will say right just to move on, and that does not mean they understand.
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The doctors will say something, and they like, “Oh do you understand?” and the response is “yes.” And I do think that the question should be, “What did you understand? Repeat back to me what do you understood,” like a first grader. Because saying yes is very easy out, because you don't want to talk about it. And maybe it shouldn't be that straightforward as repeat back to me, but in a different way, but just to make sure that the person actually understands what the consequences are, and what the, what the deal is.