NEW YORK — Deciding to undergo a prophylactic double mastectomy when she was a senior at New York University was a no brainer for journalist Ali Rogin.
“I am a get it done kind of person and I wanted to diffuse this ticking time bomb off my chest,” Rogin, a foreign affairs producer at “PBS News Hour,” said in a Zoom interview with The Times of Israel.
Rogin shares her story in her new book “Beat Breast Cancer Like a Boss,” as well as those of 30 other women who’ve also navigated breast cancer — including Congresswoman Deborah Wasserman Schultz, and writer and actor Jill Kargman. They are women of all ages, races, demographics and stages of breast cancer, which is the second leading cause of death of women worldwide.
This year more than 40,000 women will die from breast cancer and more than 275,000 cases will be diagnosed in the United States alone, according to breastcancer.org. October is breast cancer awareness month in the US.
Rogin recalled learning she might have BRCA1 during a college break. Her parents sat her down and told her that her father, Max Weinberg, the drummer for Bruce Springsteen’s E Street Band, had tested BRCA-1 positive some years before.
He’d had the test because his sister died from ovarian cancer. Several of her cousins are also BRCA-1 positive, one of whom is in remission now.
Rogin soon made an appointment with a genetic counselor and unsurprisingly, the test came back positive. And while she didn’t yet have the disease, she was of Ashkenazi descent and had a family history of the disease. That meant she had a 50 to 85 percent risk of developing breast cancer by the time she was 70. Her risk of developing ovarian cancer by age 85 was listed at 40 to 60%.
Initially, Rogin wasn’t aware that prophylactic bilateral mastectomy was an option. It was 2009 and that kind of preventative surgery was not yet mainstream for women in Rogin’s age bracket. It was also a few years before Angelina Jolie and Christine Applegate had gone public with their experiences.
When she finally consulted with an oncological surgeon and learned it was indeed an option, she made up her mind.
“I left the office scared, but knowing that this was something I was going to do,” she said.
Today Rogin is a “previvor” who wrote her book to bolster other women who may be undergoing treatment, are in remission or are waiting for results.
“I feel with great privilege comes great responsibility and so this is how I hope to have made a contribution to the conversation by telling my story,” she said.
The following conversation has been edited for clarity.
The Times of Israel: What was it like for you to undergo genetic testing?
Ali Rogin: It was very foreboding. They called me in when the results were ready and I called my mom and she came into the city. We sat down and the first thing she says is it’s positive. The genetic counselor had gone over with me some of my options, but she had not mentioned preventative surgery as an option.
Why do you think that was?
It was 2009 and at the time, for a woman as young as I was, it was seen as a relatively extreme option. However, I was lucky enough to be in New York City and had access to doctors who were all at the cutting edge of their various disciplines. I ended up going to an oncological surgeon who said “Actually, this is becoming more popular among young women, so don’t rule it out. It’s a viable option for you.”
Can you talk about what some of your fears were at the time?
On the one hand it was great relief knowing I could take care of this. The fear came from not knowing much about the surgeries, knowing it was going to be taxing. And the fact that I was definitely sad that I was going to be removing my young, and to my knowledge, perfectly healthy breasts. But weighed against the alternative of getting breast cancer, it really was for me a no-brainer.
You were just finishing college and starting your journalism career when you did the surgeries. Did you approach it with a reporter’s eye?
I wish I had done more from a reporting perspective. Some of the women journalists in the book went through this while they were well into their career and kept a video blog or diaries which they shared. For me, I wasn’t yet approaching this with a mind of how can I document this and how can I use this to inform and empower.
Then just a few years later, I found myself working at NBC, and I did start doing that. I started reporting on stories that weren’t my own, but were about other women dealing with the BRCA gene.
This isn’t really a journalistic thing, but I do wish I had taken pictures of my breasts. I had to go and get medical [photos] done and those aren’t the same. They are not exactly artful. And that is something I tell a lot of people who are going through this. You might want to think about having photos taken. I love my reconstructed breasts, but you’d know they were fake if you saw them.
Let’s talk for a moment about the language used when talking about cancer. We sometimes talk about it as a fight or a battle. Some people have an issue with that kind of language.
Calling the book what I did [“How to Beat Breast Cancer Like a Boss”] was intended to start a conversation about it. Frankly, I’ve gotten a lot of negative responses from people who say the title leaves out all of the people who ended up dying from breast cancer and suggests they have lost.
My response to that is I am calling for a redefinition of what it means to have breast cancer. I think we shouldn’t look at beating breast cancer or any other cancer as getting rid of the disease. For example, those living with metastatic breast cancer will live with it for the rest of their life because there is no cure, they are beating it every single day.
I know the violent language of battle turns a lot of people off in the breast cancer conversation. I completely understand that it doesn’t work for everybody. It has worked out for me personally. Again, that does not mean that those who have died failed, or have lost. It means that the medical advancements have lost.
In the introduction to Dr. Marisa Weiss’s segment in the book, you wrote about how fear of cancer doesn’t go away when chemo, radiation, and/or surgeries are through. Is that the case for you?
In terms of my own story, I don’t think about breast cancer so much. I do have a lot of mental anguish when it comes to the next part of my journey, which will be to remove my ovaries to reduce my risk of ovarian cancer, which is heightened. That will put me into early menopause and I’m petrified of that. I’ve already begun communicating with people who had that done.
Those living with metastatic breast cancer will live with it for the rest of their life because there is no cure, they are beating it every single day
Sheryl Crow, Jill Krager and Debbie Wasserman Schultz talk about the times they were dismissed by doctors as being “hysterical.” Can you talk about that for a moment?
You have to be your most vocal advocate in medical settings. It is really up to the individual to ask questions, to do whatever research they think will be most helpful. To challenge what the doctors are telling you, if they’re a good doctor they will appreciate your desire to be fully informed and fully invested in the process. That will only help motivate them more to help you and more fully answer your questions.
But unfortunately, yeah, some of the women had a really negative experience.
In many cases some of the systemic challenges we as a nation are facing are manifested when it comes to medical settings. It’s not just breast cancer, it’s all sorts of health issues. There is some sexism that plays a role. If you’re a young woman a doctor might dismiss you as being too young to have cancer. If you’re a pregnant or nursing mom they’ll say “Oh the lump is just mastitis, or come back when you’re not pregnant.”
The US Supreme Court will soon hear a case about the Affordable Care Act. There is deep concern that it will overturn the act and that millions of Americans with preexisting conditions could lose health coverage. What are your thoughts on that?
Interestingly, I had surgery shortly after the Affordable Care Act became law. So, my surgeries were covered and I never had to deal with the discrimination over preexisting conditions that existed prior to the ACA. Had it happened sooner I certainly would have experienced all the discrimination regarding insurance. That is not a political statement. That is just fact. The BRCA mutation was considered a preexisting condition. Certainly, the conversations that are happening in the political sphere right now and indeed this week are extremely relevant to the conversation about breast cancer.
The BRCA mutation was considered a preexisting condition
The women profiled in your book had a lot of emotional support as well as financial security. What do you suggest for women who don’t have the same resources?
There are some incredible resources out there for women.
On the financial side there are amazing organizations like the Pink Fund you can apply to. They don’t actually pay your medical bills, but they take care of the other bills that pile up and can lead to a spiral of financial toxicity that a lot of people with cancer deal with. There are also organizations that will help pay for plastic surgery procedures.
On the side of emotional support, there are incredible support groups all over the country, many of which are regionally based like the Gilda’s Club. For Black women there is the Sisters Network, and there are regional Komen alliances. Another incredible resource is breastcancer.org, an incredible online community. There is also Sharsheret, a Jewish breast cancer group and FORCE: Facing Our Risk of Cancer Empowered.
I think no matter how supportive your family or friends are, it’s important to have women or men who have gone through what you have gone through to relate to.
Speaking of men, many people aren’t as aware that men can get breast cancer.
To be honest, I wish I had included at least one male story of breast cancer in the book. It wasn’t for lack of trying. Recently, in another sort of watershed moment, Matthew Knowles, Beyoncé’s dad, came out publicly and talked about being diagnosed with what he calls chest cancer.
I think that’s great. It’s a way to remove the gendered element from the conversation because for whatever reason breasts are all tied up in femininity and sexuality and all these external ways that we conceive of them. So, for men it can be really embarrassing to say “I have breast cancer.”
So, let’s just call it chest cancer if that gets men more in tune with their chest health, then why not.
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