Episode 29: BRCA: A Jewish Legacy

Phyllis: I do think... if I were not Jewish would I not have it? I’m honored to be Jewish but I don’t have to be this honored. You know?

[Theme music]

Nahanni Rous: Welcome back to Can We Talk?, the podcast of the Jewish Women’s Archive. I’m Nahanni Rous. This month, we’re talking about cancer... specifically, breast and ovarian cancer, and the hereditary mutation of BRCA: the breast cancer gene.

Dr. Rachel Brem: Just imagine going to shul and looking around and seeing a couple hundred women. You know that a significant number of them are going to have this.

Nahanni: One in 40 Ashkenazi Jews carries this cancer-linked mutation… far more than the wider population. And while women and men both carry it, it shows up most often as cancer in women. The legacy of cancer in Ashkenazi Jewish families often reads like a matrilineal genealogy… mothers, sisters, grandmothers, aunts… Some family trees are riddled with it. As one friend of mine put it: There are two types of people in the world… the ones who have had cancer, and the ones who haven’t had it yet. And that was before her own diagnosis.

Nahanni: In this episode, we’ll meet a mother-daughter team on a mission to fight breast cancer, we’ll speak with a genetic counselor who has helped thousands of women make decisions about genetic testing, and we’ll hear about one woman’s harrowing experience with ovarian cancer. This is a huge and painful topic that touches on mortality, fertility, body image, family relationships, and the looming question of whether to get genetic testing. Even as we dive in, we’re still just scratching the surface of this complex issue.

[Theme Music fades]

Nahanni: Dr. Rachel Brem is the director of the Breast Imaging and Intervention Center at George Washington Cancer Center in Washington, DC. She’s also the Center’s Program Leader for Breast Cancer. Her battle against cancer is personal as well as professional. She’s BRCA positive, and her story, like all BRCA stories, is multi-generational.

Dr. Brem: My mother was a beautiful 33-year-old woman who in the 1970s was shocked to learn that she had breast cancer at the age of 33, ovarian cancer at the age of 46, and lived to be 77, and when she passed away, she passed away cancer free, astonishingly.

Nahnni: Dr. Brem was 12 years old when her mother was first diagnosed.

Dr. Brem: My mother's diagnosis permeated every inch of all of our lives. And in fact that was the motivation for me to go into medicine and try to make sure that no other family would be dealt the blow that our family did. You know, my mother had many complications from the surgery and chemo and radiation that she had in the ‘70s, which is so different than we have today. And so her illness was an integral part of her of our lives from the day it started.

Nahanni: Dr. Brem went to medical school in the 1980s, when mammography was first being widely used to detect breast cancer. When she became a doctor, she used to test out new ultrasound equipment on herself. One day in her office after hours, she found a lump in her own breast.

Dr. Brem: I knew exactly what it was when I saw it and in fact I felt so fortunate because I really felt for my patients that have to face the same kind of decision without the kind of information and the lifelong immersion in this field that I've had.

Nahanni: She says it was terrifying, but she knew exactly what she wanted to do. She had a double mastectomy and chemotherapy, and she hasn’t had a recurrence. Her daughter, Andrea Wolf was 12 when all this was happening, the same age Dr. Brem was when her mother got cancer.

Andrea Wolf: It was right before my Bat Mitzvah. She shielded me beautifully from how hard that was.

Nahanni: In the mid-1990s, the BRCA genetic mutation was identified, and women began getting tested for it. Dr. Brem tested positive for a strain called BRCA1. When Andrea turned 22, she was tested, and she was positive too.

Andrea: And it wasn't really a shock for me because I had always assumed that I would be.

Nahanni: Andrea’s options were a double mastectomy, or enhanced screening to try to catch cancer early if it developed. If she did nothing, the odds were over 85-percent that she’d get breast cancer.

Andrea: I had a lot more options I think than my mother or my grandmother because I seriously considered and then chose prophylactic surgery to try to avoid getting the disease in the first place, which is what I did.

Nahanni: Andrea says, by preempting cancer, she changed the narrative of her family. She now hopes to help more women do the same thing. It’s been six years since her double mastectomy, and Andrea still talks about breast cancer every day. She’s the CEO of the Brem Foundation, which was started by a group of her mother’s patients. The foundation supports women of all backgrounds in the Baltimore/DC area who have breast cancer or are at risk of getting it. Andrea says she’s especially concerned about the prevalence of BRCA-related cancers in the Ashkenazi Jewish population.

Andrea: And unfortunately, we're still losing young women to this disease. I mean women who have the BRCA mutation tend to get more aggressive, younger cancers.

Nahanni: The majority of breast and ovarian cancers are not genetically linked. But women who do have a BRCA mutation have a very high chance, a 45 to 85-percent chance, of getting cancer during their lifetime. BRCA also increases men’s risk of getting certain cancers.

Andrea: It's been shocking to me that people get misinformation or not enough information and because it so disproportionately affects our communities I think there is a huge need.

Nahanni: A huge need for more information and more open discussion. I doesn't help that in some communities, cancers associated with BRCA are stigmatized.

Andrea: For example, in very very Orthodox and ultra-Orthodox communities there is still a very, very prevalent culture of this being taboo. It's not discussed. There are issues of modesty associated with anything having to do with any type of sexual organ, reproductive organ. And that's a huge problem.

Nahanni: Sometimes ultra-Orthodox parents worry a positive BRCA test might make it harder for their children to find a spouse. But Andrea says cancer is a hard topic in every community.

Andrea: I mean, we have to be more comfortable as a Jewish Community talking about this. You know, there is no reason why any more this should be something that anybody is embarrassed or feels ashamed about. Look, it's not a mutant, it's a mutation.

Nahanni: So what is BRCA?

Andrea: Basically, everybody has a BRCA gene and the BRCA gene recognizes cells that are replicating abnormally and essentially attacks them. And when there's a mutation in that gene it has more trouble recognizing when cells are replicating abnormally which can become then cancerous.

Nahanni: Genetic mutations tend to cluster in populations that are geographically or culturally isolated… which Jews in Eastern Europe were, for a thousand years. That's why Ashkenazi Jews are are so much more likely to have the BRCA mutation.

Nahanni: Andrea says, no matter what community you come from, talking about mastectomies and hysterectomies can be uncomfortable, and there’s a lot of confusion: What do breast implants look like? What do they feel like? What happens to your hormones when your ovaries are gone? What happens to your fertility?

Andrea: A lot of people have asked me does it mean you can't have anymore children? I’m surprised by how many people don't know that mastectomies doesn't mean that you can't have children.

Nahanni: Women of childbearing age who have their ovaries removed go through early menopause. But they may be still be able to get pregnant, if they have their eggs frozen first. A double mastectomy, like Andrea had, means you can’t breastfeed, but it doesn’t affect your ability to get pregnant.

Andrea: I personally had two daughters before my prophylactic mastectomies and then two more afterwards.

Nahanni: Andrea’s daughters range from 6 months to 11 years old.

Andrea: People ask a lot what do you tell you daughter? What do you talk to your daughters about? So first of all I'm very open with them about what I do. And I think they should know, but I think they should not be scared. A, there’s nothing for them to do right now. People do ask me, can I test my 7-year-old? Can I test my 5-year-old? The answer is no, you can’t. Not until they’re 18 and they can consent to the test. And there’s also no reason to, because they can’t do anything about it until they are adults.

Nahanni: Andrea’s mother, Dr. Brem, says she starts screening women for cancer at age 25 if they’re BRCA positive. And Dr. Brem says she hopes by the time her granddaughters are adults, there will be new drugs and therapies that are even more successful than what’s available now. Here she is again.

Dr. Brem: The message I would want to send is a message of empowerment. That it is not a death sentence. It doesn't go away just by closing your eyes to it.

Nahanni: Dr. Brem urges women who have a family history of breast, ovarian, or colon cancer, or prostate cancer in male relatives, to be tested for BRCA. But she says, testing is a personal choice.

Dr. Brem: There is no right or wrong. It’s what’s right for you. And just because someone feels like they don't want to know now doesn't mean they may not know in five years. It depends on your stage in the life, your place in life, where your head is in life. So what we're saying is not you need to go get tested. What we're saying is have the information and then make the decision that’s right for you.

Dr. Brem: You know, as the doctor, the hard part is when things don't go well. And you know it is true that early breast cancer is essentially a curable disease: 95% of women with early breast cancer survive and thrive. On the other hand, there's 5% that don't. And not everybody is detected early, so we sadly still lose people to breast cancer. The journey that people have to take can be unnecessarily difficult with a late diagnosis. And that's the hardest part.

[Theme music]

Nahanni: Since the BCRA test first became available, the cost of testing has dropped. It used to cost thousands of dollars and is now available in some places for under 2-hundred. Taking the test can be as simple as spitting in a tube. The difficult part is interpreting the results. And it can be even more agonizing to decide what to next. That’s something no one should face alone.

Nahanni: Peggy Cottrell has been a genetic counselor for 16 years. She works with Sharsheret, a national Jewish organization that supports Jewish women who are at risk or fear they may be at risk for breast and ovarian cancer. Sharsheret is a partial sponsor of this episode of Can We Talk?. Peggy has counseled thousands of women, men and families through decisions about genetic testing: whether to do it, how to interpret the results, and what to do next.

Peggy: You know, I could never say to somebody you know this could not this will not be scary information. Because it absolutely is scary information to find out about oneself.

Nahanni: And it’s not isolated information. If you have have the BRCA mutation, there’s a 50-percent chance you’ll pass it on to your children. There’s also an increased chance your relatives may have it. The information can be vital, but some people don’t want to know, and resent being forced to confront it if another family member decides to get tested.

Peggy: What I always suggest that women do is they weigh the pros and cons, that they weigh the possibility that the information they find out on this test could save their life or save the life of someone in their family.

Nahanni: One of the reasons the test can be important is that some BRCA-related cancers have targeted treatments. Also, health insurance companies will usually pay for enhanced cancer screenings for people who have a BRCA mutation.

Peggy: Now women who have that careful screening don't reduce their chance to get breast cancer. They just reduce their chance that they'll die from it.

Nahanni: Early detection of ovarian cancer is unlikely, so Peggy says many women who are BRCA positive are advised to have their ovaries removed once they’re done having children. Genetic testing can be lifesaving, but it doesn’t provide all the answers… and there can be drawbacks to getting the test. One concern is that life insurance policies can ask for your BRCA status, and then charge a higher premium if you’re positive. And there’s another complication. There are mutations that haven’t been identified yet, and can’t be tested for, so a negative result doesn’t always mean you’re in the clear.

Peggy: What I really want is for people to make an informed decision about whether they should have the test. And so if it makes them nervous, I want them to know yeah, this is scary information to know about yourself. But you could learn something so important that it could save somebody's life. Somebody you care about. Yourself or someone in your family.

[Theme music]

Phyllis: You know I said, I don’t want anyone else in our club, but if you’re coming in, come in.

Nahanni: Our next guest has chosen to remain anonymous. She’ll be talking about her family’s medical history, which some people consider private information. We’ll call her Phyllis. She’s 71, born and raised in the Midwest. Four years ago she felt a whirring in her abdomen, and had some spotting.

Phyllis: So I called my gyne. She said you know usually it’s nothing. Come in for an ultrasound. Um, so that was a Wednesday and thank goodness my husband was with me because, you know, she’s, the technicians are looking at the ultrasound and she says “Oh this doesn’t look good. It looks like there’s a mass.” So I said “Ok,” you know your heart sinks lower than it can go.

Nahanni: Phyllis had Stage 1 ovarian cancer. Her doctors recommended six rounds of chemotherapy. During the first round of chemo, her face puffed up and her throat began to close.

Phyllis: And I was just scared to death. Cause I said, “What happens if I can’t tolerate the treatment? What then?”

Nahanni: Eventually they found a drug that eased some of the side effects of treatment, but not all of them.

Phyllis: From the third chemo on, I mostly lay in bed and cry and watch how many birds, watch out of my bedroom window how many birds flew up to a birds nest near my house.

Nahanni: She was in treatment for four and a half months.

Phyllis: You know. I keep on thinking poison in, poison out. Poison in, poison out. They want you to drink a lot. The first couple of days after chemo. I said to wash all the toxins out.

Nahanni: It’s been four years and Phyllis still suffers from some side effects of chemotherapy, like numbness in her hands and feet. She worked as a pediatric physical therapist for 45 years, but had to retire because she couldn’t work with her hands anymore.

Nahanni: When Phyllis was first diagnosed with ovarian cancer, her doctor gave her information about genetic testing, but she wasn’t interested. She was dealing with enough. Then, a year later, her older sister was also diagnosed with ovarian cancer. They have a third sister, who’s younger, and was still cancer-free. Genetic counsellors suggested they get tested, for their younger sister’s sake.

Phyllis: So we went for genetic counseling and eight of us went, like my sisters and our husbands and our neph… you know our kids. My kids were out of town so they couldn’t come. And so my older sister and I were tested and we both came out positive for the common Jewish Ashkenazi gene mutation, BRCA2, and then my younger sister got tested for the same thing and then she was positive, also.

Nahanni: Phyllis’s younger sister had a prophylactic hysterectomy and is cancer free.

Phyllis: After I was positive for the BRCA, I got really depressed, you know. It was just like another, another thing that I had to learn to live with. You know it’s just like another ding in your, in your soul for me, you know in your building blocks of who you are, you know the cancer and this then

Nahanni: Phyllis says, she’s not sure she would have wanted to know she was BRCA positive as a younger woman.

Phyllis: You know I know that there’s a, I know I’ve talked with younger people and I know that the younger people who have found out that they’re positive are, feel very enlightened and very informed and very proactive that there’s something positive that they can do with the information.

Nahanni: If she had found out she was BRCA positive as a young woman, Phyllis says she probably would have opted for a double mastectomy. But she ended up getting ovarian cancer, not breast cancer.

Phyllis: In a way I’m glad this is the way we found out, cause when you’re born with it that’s a weight to carry on your shoulders, even though I would have probably done intervention, you know preventive surgery, you know, but it’s a whole other avenue, you know a whole other adventure you have to go down, you know?

Nahanni: And you, you have two children, right?

Phyllis: Yes.

Nahanni: So have you spoken with them about the gene and getting tested?

Phyllis: Yeah. They know what they have to do. One child has and one child hasn’t yet. Not child. They’re adults.

Nahanni: Would you feel comfortable sharing more about that?

Phyllis: I mean so far, it’s good. That’s all I can say. But, I’m sure that would feel horrible if I passed it on to somebody, even though I didn’t you know like I think I don’t blame my father at all, but if I were to pass it on, I would feel horrible even though I don’t blame my dad because you know he didn’t know. It’s not his fault.

Nahanni: Do you relate this... the BRCA gene at all to your Jewish identity?

Phyllis: Absolutely. Well the BRCA mutation that we have is called the Common Jewish Ashkenazi gene mutation. Yeah I do think of if I were not Jewish would I not have it? I’m honored to be Jewish but I don’t have to be this honored. You know? I did ask my husband... I said if you knew that I had BRCA2 would you still have married me? So he said yes, he would have. So.

Nahanni: Can you understand why some people don’t want to get tested.

Phyllis: Yes. You know it’s knowledge, it could be knowledge, and information which could be powerful, but it’s also sadness. And then the reality of increased risks, so. You know on some level I think ignorance is bliss. So like I said I don’t think there’s a wrong answer. I think it’s whatever fits into your mind, into your heart, into your soul, into your family, into whatever. But I wouldn’t want them to make decisions out of ignorance either. You know, then make a decision based on accurate information, not... not fear.

Nahanni: Phyllis was in her sixties when she had a hysterectomy, so she didn’t have to worry about her fertility. She says, she doesn’t miss her ovaries. Unlike breasts, you can’t see them. But she struggles with depression. Seeing a therapist helps, and she started meditating. She goes to a cancer wellness center near her house, where she met a group of women she calls her cancer friends.

Phyllis: One of my neighbors who got sick. She was retiring. She was supposed to go on a cruise, and I said oh did you go on your cruise so she said, no I have to tell you something, we had to cancel. I said what’s the matter? She said I’m in your club now. I said, we’re not taking any new members. You got to get out. You know. She wound up passing away, so, you know it’s just like it’s a club you don’t want to be a member of. But if there’s a silver lining to this bad stuff, you know, the woman I’ve met are wonderful and I adore them.

[Theme music]

Nahanni: Cancer is a terrifying and sometimes deadly disease, and it’s part of the Jewish story. Feminism has taught us that knowledge is power. With cancer, that’s true up to a point. Knowledge can be lifesaving, but there are no guarantees. The best we can do is make choices based on information and not fear, and support the people we love. We hope this podcast helps motivate our listeners to learn more about BRCA, genetic testing, and potential treatment.

Nahanni: This episode of Can We Talk? was sponsored in part by Sharsheret. Sharsheret is a national organization dedicated to supporting Jewish women and families at high risk for and living with breast and ovarian cancer. If you are at risk or have breast or ovarian cancer, visit sharsheret.org to learn more.

Nahanni: More resources include national organizations like FORCE, and local organizations like the Brem Foundation to Defeat Breast Cancer. You can also visit cancer.gov and search BRCA mutations genetic risk. You’ll find a useful fact sheet there. We’ve listed all of these websites and more at jwa.org/canwetalk.

Nahanni: Judith Rosenbaum directs the Jewish Women’s Archive. Becky Long is our production assistant and Ibby Caputo edits our scripts. We had production help this month from Joanna Broder. Our theme music is by Girls in Trouble. Visit Can We Talk? online at jwa.org/canwetalk. You can also find Can We Talk? just about anywhere you get your podcasts.

Nahanni: I’m Nahanni Rous. We’ll be back soon.

[Theme music fades]