Born with BRCA
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Born with BRCA

Max Weinberg, Springsteen’s longtime drummer, his daughter, Ali Rogin, talk about Ashkenazi genetic mutations

When you’re 17 and driving through the streets of your suburban town with the windows down and Bruce Springsteen and the E Street Band blasting “Born to Run” on the cassette deck, you can’t imagine that a few short decades later you’ll be on the phone with the band’s drummer, Max Weinberg, talking about his prostate surgery.

As Mr. Springsteen sang on “Thunder Road” all those years ago, “Baby, we ain’t that young anymore.”

But these days, Mr. Weinberg is all about the preventive care.

That’s not precisely true. For one thing, as we’ll see, he’s been about preventive care for a long, long time. He thanks his mother for that.

And he has plenty of other interests, including shepping naches that his daughter, Ali Rogin, a producer with the PBS NewsHour, has just published a book, “Beat Breast Cancer Like a Boss”; serving on the Delray Beach Planning and Zoning Board; and still banging those rock ’n’ roll drums. Last year, a five-day recording session with Mr. Springsteen brought the surviving members of the band back together to record “Letter to You,” which came out in October; he hopes that a tour will follow, when the covid danger recedes.

But it was his concern for preventive care — for him, yes, but for you, too! — that led to a conference call last week with Mr. Weinberg, Ms. Rogin, and me. And the particular type of preventive care Mr. Weinberg was advocating is genetic testing. Last month, father and daughter appeared in a livecast video arranged by Yodea, a Miami-based organization founded by Dr. Elizabeth Etkin-Kramer to encourage people of Ashkenazi Jewish descent to test whether they have the mutations on the BRCA genes that predispose people to breast, prostate, and other cancers. 

Both father and daughter have the BRCA mutation; they spoke on the video about their decisions to be tested, and what they did with that knowledge.

Yodea, which is the Hebrew word for “know,” not only educates about the prophylactic value of getting tested, but has arranged with a national medical laboratory to make medical-grade tests for BRCA and 28 other mutations available for home use (it’s a spit test) for only $149.

“These are all actionable genes,” Dr. Etkin-Kramer, a Miami Beach gynecologist, said. “If the protein isn’t working well, if it affects your risk, there are things you can do about it.

“Women with a BRCA mutation have a 70 percent greater chance of getting breast cancer and 50 percent more of ovarian cancer,” she continued. That’s because the BRCA gene controls the proteins that suppress tumors; when that gene isn’t working properly because of the mutation, cancers that otherwise would be snuffed out get a chance to grow and kill. “If they don’t work well, a tumor is more likely to develop, and at a younger age,” Dr. Etkin-Kramer said.

As a result, “40 percent of ovarian cancers are related to BRCA.”

Dr. Etkin-Kramer started looking into making the testing widely available a decade ago. “When I approached the only lab that did the test at the time, I couldn’t get anything cost effective,” she said. “About four years ago, I was able to beg and plead and negotiate with the lab to get the price down. 

Ali Rogin and her very proud father, Max Weinberg

“There are three different ways to be tested. One is seeing your doctor and doing it in the office. Another is seeing a genetic counselor. The other way is educating yourself through our website, making sure you’re comfortable, and ordering a kit through the website. It’s a medical grade lab, one of the labs I use in the office. You’ll get results in about three weeks and counseling is included about what the results mean if you need it.

“It’s painful for me to see a woman in my community being diagnosed with an advanced cancer that could otherwise be prevented,” she said. “It’s painful. That’s why we’re educating and trying to help men and women to get tested.”

Mr. Weinberg got himself tested for the BRCA mutation back in 1997. He took the test at the NYU Medical Center.  (The New Jersey native was living in Middletown Township and working as bandleader for Late Night With Conan O’Brien at the time.) 

“My older sister was tested and had it,” he said. “She suggested I get tested. She died at the age of 57 from ovarian cancer. My mother was tested. She didn’t have it. The assumption was my father was the carrier. He passed away at 84 from colon cancer.

“I’m very thankful that my mother, Ruth, was extraordinarily proactive in my health care, into my 50s. Every six months she’d make sure I’d see physicians, dentists, you name it. She created in me the posture of always having checkups and dealing with whatever you found.”

Even before he was tested and found out he had the BRCA mutation, Mr. Weinberg started taking the Prostate-Specific Antigen test for prostate cancer.

Once he knew he had the mutation, he was looking at a “lifetime risk of probably 20 to 30 percent of aggressive prostate cancer,” according Dr. Etkin-Kramer.

“I started PSAs in my 30s,” he said. “In my 50s, every six months I’d get a full exam including the PSA. In March of 2011, my general practitioner said my PSA was a little high. He sent me to this urologist in our town, a great diagnostician.” 

Was the PSA high because he rode a bicycle? The question’s not as odd as it seems. PSA is a protein produced by cells in the prostate gland. Some of it finds its way into the blood, where it can be detected by a test, even when the prostate is healthy; cancerous prostates leach much more PSA. Hence the test. But prostates that are under pressure – say, by being pressed against a bicycle seat – also produce more PSA. 

No. It wasn’t because of bike riding.

But “I did spend a lot of time on a drum throne,” Mr. Weinberg said. “It’s basically a round platform.” Like a bicycle seat. And “the extra pressure on your anatomy could raise your PSA.”

But that wouldn’t explain a sudden rise in the number. 

This family rocks: Max and Becky Weinberg, Chloe and Jay Weinberg, Ali and Josh Rogin at the Iowa State Fair before Jay’s band Slipknot played last August.

He took a course of antibiotics to see if it was an infection.

It wasn’t an infection. 

So the urologist said, “let’s go in and do a biopsy.

“Men hear biopsy and they freak out. The way they do biopsies now is so noninvasive. They take six, maybe 10 samples of tissue. They sent it to Johns Hopkins. They discovered that in both the upper left and lower right quadrant of the prostate, I had a garbanzo-bean-sized tumor. The prostate is the size of a walnut, so it’s a pretty big tumor.

“The outcome is I don’t have a prostate, but I still have the gene. I get a full body MRI yearly. Cancer can pop up anywhere. The fact I had it in one area does not mean I wouldn’t get it somewhere else.”

In 2009, when she was a college student, Ali Weinberg — she would not marry journalist Josh Rogin until 2016 — got tested. 

She had the mutation, and in her senior year she decided to get a prophylactic bilateral mastectomy and reconstructive surgery. “Angelina Jolie came out a few years after I went through my experience and wrote about her decision to do what I did,” Ms. Rogin said.

“Prophylactic surgery decreases the risk by over 90 percent,” Dr. Etkin-Kramer said. Other alternatives for women with the BRCA mutation include having mammograms or MRIs more regularly, or taking medicine to prevent breast cancer, she added.

 Ms. Rogin, 33, plans to get mammograms starting when she is 40. “My risk is lower than the average woman now, but there are still some risks remaining,” she said. “I’ve come this far in working to lower my risks. I don’t want that couple percentage points to get me. 

“Also, the BRCA gene increases my risk of ovarian cancer. The recommended age to remove your ovaries is 35. I plan to have an oophorectomy at that age.

“With removing the ovaries comes early menopause. I’ll share that story at some point if it could be helpful.”

Dr. Etkin-Kramer tells the story of a patient she convinced to take the BRCA test and learned she the mutation. “She went for the prophylactic surgery to remove her tubes and ovaries. We found a very early tubal cancer. By the time it would have been detected, she would have presented with stage three disease. She would have needed chemo. We’re trying to avoid that battle.”

Elizabeth Etkin-Kramer (inset) explains the BRCA genetic mutation at a Yodeah meeting.

It was Ms. Jolie’s surgery that inspired Ms. Rogin to write her book, which collects the stories from 30 women who fought breast cancer.

“When I was going through my experience in 2009, there weren’t a whole lot of resources out there for me as a young woman dealing with this,” she said. “It was very inspiring for me, a few years later, to hear from a woman as beautiful and famous and successful and obviously no less of a woman, having gone through the surgeries that she did, as Angelina Jolie. I figured that if I felt that way about Angelina Jolie’s surgery, other women would feel similar about other different celebrities and their fight against breast cancer. I started cold-calling people I admired and was able to get 30 women who were willing to speak with me. The result a few years later is this book.”

Mr. Weinberg interjects. “I want to say, my wife” —Rebecca Schick Weinberg — and I are so incredibly impressed with Ali’s book,” he said. “We’d be impressed by the book even if it hadn’t been written by our daughter. 

Mr. Weinberg said he has been going through old papers. “I saved everything, every essay, every letter from my children.” He and Becky have two, Ali and her brother, Jay. “It’s really fun to read Ali’s work as an 8-year-old. There’s a thread of continuity of really good work.” He also praised an essay she had written “explaining the world situation in terms of the Godfather movies.

“Both Ali and Jay” — a drummer who has filled in for his father with the E Street Band and is now with the band Slipknot — “have achieved a high level of excellence. 

“To have Ali’s name on a book she worked so hard to finish — any day of the week it’s the joy of my life. Anything I might do musically pales. When your kids do something that just shows incredible growth and stamina and discipline, that’s the greatest mitzvah.

“My partner in life, their mom, Becky — we are coming up on 43 years together — is the best mom there could ever be,” he said.

“My Jewish heritage played a very significant role in both my work ethic and my academic perspective,” he continued. “I come from a very, very large family, mostly from Belarus and some areas that went back and forth between Russia and Poland. My father’s great grandfather came out from what was then Poland through Germany. He lived in Hamburg for a while. There was a wave of Jewish immigration in the 1840s and he ended up in Philadelphia. In the 19th century, my ancestors were mainly in the cigar business, rolling cigars.

“A portion of my family were true anarchists, rabble rousers at the end of the nineteenth century. My grandfather’s sister was a very close associate of Emma Goldman in Chicago.”

On another side of the family, Mr. Weinberg’s great grandfather, Joshua Mindlin, is buried on the Mount of Olives in Jerusalem. “He was a talmudic scholar who never worked a day in his life. He was the patriarch of a very large family in Belarus: 13 children or something like that. He died in 1916. His wish his whole life was to be buried there.”

Mr. Weinberg has never visited the grave, but he would have, were it not for covid. 

Ali performs with her dad and his Max Weinberg Orchestra at the Rainbow Room.

“I was planning to perform with a big band in East Jerusalem run by my good friend and musical pal David Broza,” he said. “We had this planned out for May or June. I hope some day Bruce and the E Street Band get to play in Israel. That would be spectacular.”

In his own role of family patriarch, Mr. Weinberg feels very fortunate in how his career worked out. 

“If you asked my children when I was very young what I did, they would say Daddy’s on TV,” he said. “The E Street Band didn’t reconstitute until 1999, when Ali would have been 12. They knew Bruce Springsteen and Patti Scialfa from social events. Their children are about the same age as Ali and Jay.”

When the band got back together and Mr. Weinberg took leave of Late Night to tour with it, “it gave us the opportunity to travel all over as a family. All credit to my wife Becky. She was a high school teacher who taught social studies and economics. She ended up having a constituency of two. Which is why they both did great in school and turned out to be formidable readers and splendid citizens.”

And about that new Bruce Springsteen and the E Street Band album, “Letter to You.”

“One of the real pleasures of my life is the fact that in November, when we recorded this album live in the studio, we were able to reconvene having not played for three years and go right to that place that is so uniquely E Street,” Mr. Weinberg said. “With the added wisdom and finesse that hopefully come along when you grow in your instrument and always challenge yourself.

“I approach my drumming as a craftsman, with a level of mindfulness about the parts I play. When you’re recording, Bruce will change the arrangement. In the movie about the album, I see him changing the arrangement as we’re playing it for the first time. Those moments are fun. You can completely challenge yourself as you grow older if you keep yourself musically fit and physically fit.

“I do love to play the drums,” he continued. “When I’m sitting behind the drums I’m like a 12-year-old-kid.”

Three of the songs on the new album date back more than 40 years.  “I think we did a very unfinished demo of ‘Jamie Needs a Shooter’ back then,” he said. “There were no words but it was a solid arrangement. The late great Warren Zevon used the title for one of his songs.

“One of my abilities is the ability to go back in time. I play the way I play now, with a lot more finesse, precision, control, and relaxation. But I can put myself into my 26-year-old drumming space musically. I just played it like it was 1977. It was a lot of fun. There’s a lot of drum fills on that.”

And of course, Mr. Weinberg is eager to get the show back on the road.

“As soon as it is safe, I can’t think of anything we’d rather do than go out and play music together,” he said. “I’ll get a phone call, the bus will come to my house, and off we’ll go. You’re getting as much from the audience and you’re truly in concert together. There’s nothing like playing for the Bruce Springsteen and the E Street Band audience. They’re the best, the most loyal. I’m sure when it’s safe for everybody, it will be business as normal as long as people want to hear the songs.”

Go to Yodeah.org for more information about BRCA testing.

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