NCI Director Monica Bertagnolli remembers when Betty Ford and Nancy Reagan went public with their breast cancer diagnoses—and the profound impact those decisions had on oncology.
“First Ladies Betty Ford’s and Nancy Reagan’s public sharing of their breast cancer diagnoses had a tremendous effect on how our society views cancer,” Bertagnolli said during her introduction of a March 7 panel convened by the Cancer History Project, “How Betty Ford and Nancy Reagan’s cancer diagnoses impacted a nation.”
“Their courage in sharing information about their personal health, at a time when the subject of cancer was taboo, provided much needed support to so many women at a time when social support was so much less than it is today,” Bertagnolli said.
Bertagnolli was diagnosed with breast cancer only eight weeks after becoming NCI director (The Cancer Letter, Dec. 14, 2022). Like Ford and Reagan, Bertagnolli was forthcoming about her diagnosis.
“It was important to me to be open about my diagnosis. What I want to share is that my prognosis is very favorable,” she said. “My cancer was diagnosed by mammogram, and the care that I am receiving is a result of decades of research funded by the National Cancer Institute.
“I am so grateful to the many women, and researchers supporting them, who’ve made my care possible. It was also important to me to participate in a clinical trial, to give back in that way, and I am doing so in honor of all the other women who did the same for me.”
A video and podcast of the panel appear above. A full transcript of the panel is published below.
The panel was moderated by Stacy Wentworth, assistant professor of radiation oncology at Wake Forest University School of Medicine and medical director of cancer survivorship at Atrium Wake Forest Baptist Health Comprehensive Cancer Center.
A guest editorial by Wentworth on the subject of First Ladies with breast cancer appears here.
Wentworth was joined by panelists Mirelle Luecke, supervisory museum curator at the Gerald R. Ford Presidential Library and Museum, and Karen Tumulty, deputy editorial page editor and columnist of The Washington Post. Tumulty is also the author of “The Triumph of Nancy Reagan.”
Six weeks after Gerald Ford became president, Betty Ford was diagnosed with breast cancer.
“Right from the beginning, Betty was really adamant that she would be open about this,” Luecke said. “When she first became First Lady, she talked about how she was going into this office as Betty and as the woman that she had always been.
“She said, ‘If they don’t like me, they can kick me out.’”
Making the decision to go public with her diagnosis made sense for Betty Ford. She then used her role as the First Lady to educate women in America to get screened for breast cancer.
“She hadn’t planned to go get a breast exam, and then all of a sudden, they found a lump,” Luecke said. “That really shook her up and made her think about all the other women in the country who might be in that same position.”
Ford received a radical mastectomy just as the science was changing. While she was under the knife, cancer researcher Bernard Fisher was giving a presentation at NCI about how the radical mastectomy—which removes the breast, lymph nodes under the arm, and chest wall muscles—was no more effective than a modified radical mastectomy followed by radiation (The Cancer Letter, Oct. 4, 1974).
The Cancer Letter’s founding editor Jerry Boyd, who started this publication not quite a year earlier, recognized that fate had dealt him one hell of a story—and he nailed it, writing big:
The timing was ironic, with overtones of tragedy for yet another of the Nation’s first families. Nathaniel Berlin, director of NCI’s Div. of Biology & Diagnosis and chairman of the Breast Cancer Task Force, had for months planned a “state of the art” report to the scientific community on detection and treatment of breast cancer. Date for the report Monday, Sept. 30-was scheduled weeks ago. Then Betty Ford, the wife of President Gerald Ford, underwent a Reporters and other nonscientists jostled for seats with the professional observers in the NIH clinical center auditorium, with the overflow watching on closed-circuit TV in a smaller theater. Berlin told The Cancer Newsletter last spring that he felt it was too early for the Task Force’s tentative findings to receive public recognition, and that the various studies should have another year or more first. But the results were already being widely circulated and NCI decided that an official report was necessary. Any chance that the report would be limited to the profession with little public awareness disappeared with Betty Ford’s illness. The result may be that the dramatic, although tentative, findings of the Task Force will be forced by public pressure into medical practice-prematurely, some feel. The two most important conclusions involved treatment :
At the CHP First Ladies panel, Wentworth said Ford underwent surgery at the exact time when approaches to the treatment of breast cancer were shifting.
“She was really at the edge and at the precipice of the change in surgery,” Wentworth said. “I can’t imagine how much pain she was in, and even after a modified radical mastectomy, many women will find that it takes a while to get their strength and that range of motion back.”
While Betty Ford was recovering in the hospital the week after her surgery, President Ford brought her a get-well gift—a football from the Washington Redskins, a team now renamed the Washington Commanders.
First Lady Betty Ford passes President Gerald R. Ford a football while recovering from a radical mastectomy at Bethesda Naval Hospital.
“She decided she was going to surprise him. Show him, her doctors, and the American public how well she was recovering,” Luecke said. “She throws this football to him, which is really incredible when you think about it… She’d never talk about how painful it was to do that. She always had a very positive spin on it, but I imagine it was quite a determined act to push through the pain there and throw that football.”
Ford’s diagnosis and treatment resulted in something called the “Betty bump.”
“There was an increase in breast cancer diagnoses by about 15%,” Luecke said. “She received over 50,000 pieces of mail sent to the White House during and after her ordeal. Many of these letters were from women thanking her for being so open about her experience.”
Ten percent of the letters were from women who had experienced breast cancer. Others shared that Ford had prompted them to get breast exams.
First Lady Nancy Reagan was diagnosed with breast cancer more than a decade later—in 1987. By then, Reagan was already familiar with what it took to tell the world about a cancer diagnosis (The Cancer Letter, July 19, 1985).
Nancy Reagan kisses her husband, President Ronald Reagan, while recovering from a modified radical mastectomy at Bethesda Naval Hospital in 1987. A get well card for the First Lady features prominently at the foot of the bed.
“They had been through something like this only two years before, which was Ronald Reagan’s diagnosis and subsequent surgery for colon cancer. He had also been diagnosed with skin cancer,” Tumulty said. “They had already been through the sort of scrutiny that a president and a president’s family are going to get in this situation.”
Nancy Reagan was savvy about medical issues because her father was a surgeon, Tumulty said. Reagan knew she could be a candidate for a lumpectomy, but opted for a modified radical mastectomy.
Like Ford, the Reagan White House decided to be open about the First Lady’s diagnosis and treatment.
“There was some public second-guessing to her decision to go with surgery,” Tumulty said. “Again, it wasn’t like she didn’t know her options. It wasn’t like she didn’t weigh her options, but she also knew herself, and she knew what would make her feel most comfortable.”
Rose Kushner, a prominent breast cancer activist at the time, “told The New York Times that Nancy Reagan ‘set us back 10 years. I’m not recommending that anyone do it her way,’” Tumulty said. “Second-guessing someone’s choice like that in public adds a lot of pain and scrutiny to what she was already going through, but she was comfortable with her choice.”
Reagan took on the role of advocate—recommending that women get mammograms so their cancers could be detected earlier.
“She was very aggressive in promoting early detection, and making people talk about it, and making people think about it,” Tumulty said.
Reagan made the decision not to have reconstructive surgery.
In one of her diaries, she wrote: “I still haven’t shown Ronnie me—even though he says it doesn’t make any difference, and I believe him, I somehow can’t bring myself to do it yet. I’ll know when the time is right.”
Ford, too, wrote about her recovery from surgery. “In her autobiography, she writes about sneaking looks under her bandage so she can see the scars herself because, of course, she’s still trying to come to terms with those,” Luecke said. “The way that she writes about her own self-image and what she thinks about the surgery is very much tied with her concerns about how Jerry is going to respond to her now that she’s lost a breast.
“She was really invested in sharing these concerns about the physical toll and the emotional toll of the surgery with the public in her autobiographies, because she, again, wanted to try to show other women in the country that it was okay and that these were things that she was feeling, that everyone was feeling,” Luecke said.
Transcript
Monica Bertagnolli: Hello, everyone. I am delighted to be invited by my very good friend, Paul Goldberg, to stop by at this event in honor of Women’s History Month. First Ladies Betty Ford and Nancy Reagan’s public sharing of their breast cancer diagnoses had a tremendous effect on how our society views cancer.
I remember these events from when I was a young girl. Their courage in sharing information about their personal health, at a time when the subject of cancer was taboo, provided much needed support to so many women at a time when social support was so much less than it is today.
Most of you know that only eight weeks after taking over as NCI director, I had my own breast cancer diagnosis. It was important to me to be open about my diagnosis. What I want to share is that my prognosis is very favorable. My cancer was diagnosed by mammogram, and the care that I am receiving is a result of decades of research funded by the National Cancer Institute.
I am so grateful to the many women, and researchers supporting them, who’ve made my care possible. It was also important to me to participate in a clinical trial, to give back in that way, and I am doing so in honor of all the other women who did the same for me.
I’m so happy to see this [Cancer] History Project event with such a positive message for me personally as well as so many others. So, thank you, Paul, for inviting me to stop in and say a few words. Now, I’d like to hand it over to Dr. Stacy Wentworth.
Stacy Wentworh: Thank you, Dr. Bertagnolli, and it’s wonderful to see you, and congratulations on your great prognosis. That’s great to hear.
I would like to just go ahead and jump in. That is such a perfect introduction to the topic that we’re talking today, and it really came to me as I listened to patients talk about the public and the private; of how much to share about their own diagnoses with their family, with their friends, and with their Facebook groups, with their social media, and then the reaction that they had to sharing, whether they’d shared enough or shared not enough, whether they got the support that they thought they would or sometimes support that came in surprising ways or places.
We’re going to go ahead and get started with Betty Ford, and her cancer was diagnosed on an annual physical exam. Mirelle, what would you like to start us off? What happened after that?
Mirelle Luecke: Sure. What’s really interesting about this is that she actually wasn’t planning to go in for a physical. She accompanied her friend and aide, Nancy Howe, at her physical, and Nancy encouraged Betty to get her own because she knew the tumult of having suddenly become second lady, and then First Lady, she hadn’t really been doing her own health checkups like she should.
During that physical and the annual breast exam, doctors found a lump, and then just two days later, she underwent a radical mastectomy, but there’s some interesting story about her treatment and how she was involved or how she wasn’t involved in her treatment options.
She described that during the exam, as she was in the exam room, the doctor is going over the exam. He suddenly got up and left the room, and then doesn’t say anything to her, and then comes back into the room with another physician, the chief of surgery, who completed the exam.
They didn’t really say anything to her, and so she left the exam room not knowing what was going on, but something unusual was happening. She returns to the White House, and later that day, she got a message from the White House physician who examined her again alongside a physician from George Washington University.
They also don’t say anything to her and leave the room. So, she’s waiting, knowing that clearly, something here is going on.
ML: What I think is so interesting is that, actually, her daughter, Susan, who lived in the White House at this time, ends up going to talk to the White House doctor for something else. She had a cold.
He pulls her aside and tells her, “I found a lump in your mother’s breast, but don’t tell her anything because we haven’t told her yet.” So, it wasn’t until later in the evening when President Ford was present that the physicians tell her that they had found a lump in her breast.
She wasn’t involved in the experience in a really uncomfortable way, you can imagine.
ML: Yeah, she was a teenager, late teens. She, of course, was a mess, and ran up to her room, and was crying because she didn’t want to interrupt the important things that her mother was doing, but she had this heavy weight of news that she had to then not say anything about for the rest of the day as well.
ML: Exactly.
SW: I will read a little bit from her biography, and they talk about as they were going through her diagnosis:
”The Fords were a close family, but they also realized they were no longer just any family. The eyes of the world were on them, and they had to decide when and if they would disclose the situation to the public.
’Cancer’ and ‘breast’ were two words that were whispered, but not broadcast to the world, and rarely had a First Lady shared something so deeply personal. But at the same time, after the secretiveness surrounding the Nixon administration, President Ford had vowed that he would be transparent with the American people.”
Can you give us a sense of where they were and how they had come to this point? Because I think they were fairly early on in the presidency.
ML: Right. This was about six weeks after Gerald Ford had assumed the office of president. So, of course, he became president on August 9th, 1974 when Richard Nixon resigned, and the only reason he became president is because the previous year, in 1973, he had been appointed to the vice presidency when Spiro Agnew had resigned the vice presidency.
This had been a whirlwind period where he kept going up in office, and he’s the only president to never have been voted into office, but rather come in under the terms of the 25th Amendment.
There was a lot of tumult and uncertainty in Washington and in the country as a whole at this time, and of course, because of Watergate, a lot of negative feelings that people weren’t honest, things were being covered up.
This was really important to Ford and to his family that the administration would be open and share everything that was going on with them. I think it’s important to note too that this is also just how the Fords were. They were a really open and candid family. What you saw was what you got. So, I think this was a natural way forward for them, would be to be open in public.
ML: Right from the beginning, Betty was really adamant that she would be open about this. When she first became First Lady, she talked about how she was going into this office as Betty and as the woman that she had always been.
She said, “If they don’t like me, they can kick me out.”
She had this feeling that she would always be true to herself, and for her being open and candid about what was happening in her life was part of that process. So, for her, she did feel very adamantly about being able to share her diagnosis with the public.
Another thing for her was this was really sudden, her diagnosis, right? She hadn’t planned to go get a breast exam, and then all of a sudden, they found a lump. For her, that really shook her up and made her think about all the other women in the country who might be in that same position, not knowing that maybe they had a lump, maybe not having had a breast exam for a while.
So, she wanted to make sure that other women knew her story and were encouraged to get exams as well.
ML: That was something that was very much controlled by the White House just because of who she was and her status, but she was very open herself and was adamant that photographers could come in to her recovery room, and things like that, and take photographs of her throughout the process.
Again, she was just very adamant that the entire ordeal would be public.
ML: Yeah. I think the photograph you’re referring to is her throwing a football to President Ford.
She went in and she ended up having a radical mastectomy, which I think is worth pointing out. The way it worked in the ’70s was that you would go in for a biopsy, and you wouldn’t know when they put you under.
If they found that the biopsy was positive, they would immediately perform the mastectomy. So, when you were put under, you wouldn’t know if you were going to come out of the surgery with a breast or not. That was the background there.
She was in the hospital after her radical mastectomy for a week to recover, and she was really determined in that week that she was going to do all of her exercises. She kept on a really positive front for the American public, for her family.
Then there’s this moment where President Ford came to visit, and he brought her a football from the Washington football team as a get-well gift, and she decided she was going to surprise him. Show him, her doctors, and the American public how well she was recovering.
She throws this football to him, which is really incredible when you think about it. She had just had a radical mastectomy and had all of this tissue removed. I can’t imagine. She’d never talk about how painful it was to do that. She always had a very positive spin on it, but I imagine it was quite a determined act to push through the pain there and throw that football.
SW: Yes. Having seen women who have had radical mastectomies and modified radical mastectomies, we don’t really see radical mastectomies anymore.
To put this into context, as Mrs. Ford was undergoing her surgery, across the street at the NIH, there was a breast cancer researcher named Bernard Fisher who was presenting the results of a clinical trial that showed that the radical mastectomy, which removed the pectoralis muscles—what we consider the breast muscle—and left women with very concave chests and a lot of chronic pain, and really left them for weeks if not months in recovery, that that surgery was no longer necessary, and you could actually leave the muscle behind.
She was really at the edge and at the precipice of the change in surgery. I remember a woman telling me that after a radical mastectomy, it took her about two weeks before she was able to lift a glass of water.
I can’t imagine how much pain she was in, and even after a modified radical mastectomy, many women will find that it takes a while to get their strength and that range of motion back. That is a really incredible story.
How did her children and her husband react to the diagnosis?
ML: I already mentioned how difficult it was for Susan, and an additional reason that it was difficult was that her grandmother, Gerald Ford’s mother, had actually had breast cancer and had both breasts removed.
Susan remembered seeing these terrible scars on her grandmother, and she had a very real sense of what this diagnosis could mean. After Jerry and Betty learned of Betty’s diagnosis, they immediately called their other children, Mike, Jack, and Steve, to let them know what was going on. Mike and his wife, Gayle, flew to Washington, D.C. for Betty’s surgery.
Of course, the president was incredibly worried about his wife, but he had to continue going about the duties of being president of the United States. He wrote a letter to her expressing how much he loved her and how important she was to him as a wife and a mother, and really very emotionally telling her how important she was to him.
He cried when he learned that she had come out of surgery. This was a really difficult time for the entire family. Of course, Susan also had to take her mother’s place at a diplomatic reception that was happening at the White House during this time. There was very much this tension between trying to respond to this thing as a family and going through this incredibly emotional time with your family while also having to continue to carry out these state duties.
SW: It’s so interesting to think of that, but yet we watch women every day, as they come through clinic, balance their family life, their professional life, their friends.
I think it’s very interesting to imagine too what the world was thinking about the American First Lady and whether that was distracting the American president after we had been through such a tumultuous time, and so to project, “Hey, everything is fine,” while on the inside, worrying about your family and the most precious person in the world must have been a very delicate balance for them.
It seems like she’s just barely recovered, and then the second lady is diagnosed with breast cancer.
ML: Yes, which is absolutely wild that this would happen in such short succession of each other, but Happy Rockefeller, the second lady, did credit Betty Ford with the fact that she had gone back to her doctor for another breast exam after she heard that Betty Ford had been diagnosed.
She started to get worried herself, and that was how her breast cancer was discovered. It’s crazy that it would happen in such quick succession.
SW: Then, I think that Mrs. Ford was also one of the first women to receive adjuvant chemotherapy for breast cancer. At that same NIH conference, Dr. Fisher presented the results of an NICBP study about the benefit, especially in menopausal women of two years of chemotherapy.
Did she talk about that? I can’t imagine taking chemotherapy in the ’70s. There’s enough side effects still to this day with chemotherapy. I can’t even imagine what it was like in the 1970s and how scared she must have been.
ML: Right. She didn’t talk very much about her physical symptoms of taking the chemotherapy, but she did talk about, when she got the bottle of pills that she had to take, how scared and defeated she felt that she was going to have to take these pills for two years and thinking about how every time she took these pills, she was going to have to relive this moment of her cancer diagnosis, and her surgery, and whether or not she’d recover.
I think she was a fairly positive person, and she’s like, “Okay. Well, this is actually going to be a great thing, and I’ll make this recovery.” But at first, it was very much a constant reminder of the experience.
ML: There was an incredible response from the American public. She received over 50,000 pieces of mail sent to the White House during and after her ordeal. Many of these letters were from women thanking her for being so open about her experience.
About 10% of the letters were from women who had experience with breast cancer. Many others shared that she had prompted them to go get breast exams.
As an interesting aside, there was an increase in breast cancer diagnoses by about 15% called the “Betty Bump” after she shared her experience. So, this was something that really did impact the American public.
For myself as a curator, I’m always interested in thinking about artifacts that really tell these stories, and so one interesting thing that we have in our collection is this bracelet made out of elephant hair which was sent to Betty Ford by two American Cancer Society volunteers in Kenya after she became public about her diagnosis.
An elephant hair bracelet is known as a Maasai good-luck charm. They were sending this to her to show their support and their appreciation for her for speaking out about this.
Of course, American politicians were very supportive of her. The Senate signed Resolution 413, which was wishing her a speedy recovery, and there’s a great photograph of her and Jerry sitting on her hospital bed with this giant card that she’s reading that was signed by all the senators.
Bob Hope, who is a family friend, came to her hospital bed to help lift her spirits. It was very much a public affair, and people were really concerned about her and invested in her recovery.
ML: Yeah. Things like all of the letters are at our library in Ann Arbor. Many of them have been digitized, and they are available to view. You can read these letters, which are incredibly moving to read, and just really put this personal face on the many different experiences of women with cancer in the 1970s.
Then, we have things in our permanent exhibit here, like the football that she threw to her husband, which are on display. We try to pull out these items to tell her story in that moment.
ML: I think that’s probably about everything for now. I’ll jump in if I think of an additional exciting thing I just have to share.
SW: Well, I will say that a journalist, as they were reflecting on the things that Betty Ford—the honesty that Betty Ford brought to so many issues, including her work in alcoholism and addiction—that he talked about breast cancer and said there was before Betty and after Betty, and she really gave the American public permission to talk about breast cancer.
If it’s OK for Betty, it’s OK for us. I do think that we see that in a lot of celebrities—the Angelina Jolie effect or we’ll talk about the Nancy Reagan effect.
Anytime a woman in the public sphere, especially the First Lady, announces a cancer diagnosis, we do see in historical trends a bump in screening, a bump in phone calls, and there are records from the American Cancer Society that their phone lines were just flooded with women calling, wanting to get physical exams because they had seen and heard about Mrs. Ford.
I do think that that platform issue, which we can go into with after discussing Mrs. Reagan, is a really important thing to think about as we talk about cancer and as we’re consumers of what’s being fed to us by celebrities as well as First Ladies.
Karen, a little bit different story with Nancy. This was not her and President Reagan’s first brush with cancer, correct?
Karen Tumulty: That’s right. First of all, treatment and diagnosis, everything had changed so much by the time Nancy Reagan was diagnosed a dozen years after Betty Ford.
Her diagnosis came because of a routine mammogram, which again was something that was not nearly as routine in the 1970s, but also, they had been through something like this only two years before, which was Ronald Reagan’s diagnosis and subsequent surgery for colon cancer. He had also been diagnosed with skin cancer.
They had already been through the sort of scrutiny that a president and a president’s family are going to get in this situation, but Nancy Reagan was also the daughter of a doctor. Her father was a neurosurgeon in the 1920s. As a teenager, she used to actually go and watch her father do brain surgery.
She was really very, very savvy about medical issues. She knew to be getting mammograms, and she also figured out what her options were going to be. She knew that if this turned out on biopsy to be malignant, it was probably pretty early.
At that point, there were options for treatment. She would’ve been a candidate for a lumpectomy, and she decided, thinking of her own level of anxiety, of the radiation that would follow, that if it turned out to be malignant, she wanted to have a modified radical mastectomy.
SW: Yes. I’m going to take you back a little bit too, because I think that the Reagans were a very experienced political family. They had been through his gubernatorial, they had been through a presidential election. This was 1987. So, there was a lot more awareness, I think, about cancer, and there were a lot of things happening in the world for the Reagans as well.
I think that they learned a lesson with President Reagan’s cancer because as I understand it, she really didn’t want them to tell him that he had cancer, right?
KT: That’s correct. She was actually the one. She was very sensitive to how they broke the news to the president. She didn’t want them to use that word. She was horrified to see Dr. Steven Rosenberg, then [chief of surgery at NCI], on national television, [when] he said, “The president has cancer.”
At which point, she said, “Dammit, I knew he was going to say that,” and she was horrified to see diagrams of her husband’s colon on national TV. So, this was not necessarily something she would’ve chosen, obviously, to become very public on. Just so you can know what a cool customer she was about this, she said to her doctors, “I’ve got stuff I’ve got to do in the next couple of weeks. How soon do I have to have this biopsy?”
She was collecting a hundred-thousand-dollar check for her drug abuse foundation. She was doing an event in New Hampshire for Foster Grandparents. She had a state dinner. So, she is walking around with this knowledge for days, knowing that she was going to be going in for this surgery.
What she did decide to do was once they realized it was cancer, once they did the procedure, the White House issued a completely straightforward news release as to what had been found and what had been done.
This is a big contrast, by the way, to the way they handled President Reagan’s assassination attempt and the way they handled, for instance, his skin cancer. But they had learned a lot that if you dodge the news, it’s going to find you anyway.
At that point, Nancy Reagan becomes an advocate, a really aggressive advocate, for routine mammograms. Again, this is something that some women were afraid of, and she really did speak about it as often as she could.
She also became a private source of comfort to a lot of women who were going through what she was going through. In fact, a friend of mine, a colleague of mine at The Los Angeles Times, Betty Cuniberti, a reporter who covered the White House a bit, got what I thought was a really lovely note from Nancy Reagan saying, “Believe me, no one knows better than I how you feel right now. Although you’ll probably find a lot of people you know have had it done, and you didn’t know, or at least I did.”
She said, “When they use the word ‘malignant’ or ‘cancer,’ your heart stops, really stops. But after it’s over, you’ll find, I think, it really isn’t so bad.”
SW: I think that’s important in both of these women—to both be diagnosed in 1974 and 1987–I mean, when Betty Ford was diagnosed, probably the majority of women were being diagnosed and still dying of breast cancer. Nancy Reagan was coming in. She had a modified radical mastectomy, a completely different surgery than Betty Ford. By that point, that was the standard of care.
Nancy Reagan walks right into controversy with her surgical decision as you were alluding to, Karen, because right at this time, the trials were coming out that women did have a choice for breast conservation. So, they could have a choice of lumpectomy and radiation for about six to seven weeks, or they could have a mastectomy, and there were trials coming out in the United States, in Europe, and across the world that those two surgical options were equal in terms of survival.
There was a great push for breast conservation, that we no longer needed to “mutilate women,” and a public service announcement and public pressure for women to have a lumpectomy and radiation at this time. It sounds like Nancy’s experience as a daughter of a surgeon, and I think she brought in some of her father’s surgical residents as well to consult on her case, and maybe her brother was a surgeon.
Can you talk a little bit more about her experience with surgery, and then how her decision on surgery really blew up, sort of?
KT: For much of his presidency, she was a polarizing figure, and there was some public second-guessing to her decision to go with surgery. Again, it wasn’t like she didn’t know her options. It wasn’t like she didn’t weigh her options, but she also knew herself, and she knew what would make her feel most comfortable.
At that point, one of the most prominent breast cancer awareness advocates in the country was a woman named Rose Kushner who told The New York Times that Nancy Reagan “set us back 10 years. I’m not recommending that anyone do it her way.”
I do think, again, second-guessing someone’s choice like that in public adds a lot of pain and scrutiny to what she was already going through, but she was comfortable with her choice.
She also decided—and I do not know why—but she also decided she didn’t want to go through the additional surgery of a breast reconstruction.
Nonetheless though, the White House was very open about what she had chosen and why she had chosen it, and her big cause from then on out was to recommend that women go in and get those mammograms so that more cancer could be caught as early as hers was.
KT: Yes. Again, this was not a situation where, as with Betty Ford, they went and told all the men around her first. I mean, Nancy Reagan was very much in charge of her own health care, of her own decisions. Although it was interesting, when it came time to tell Ronald Reagan what the situation is, she decided to send in the White House physician to tell him.
SW: Well, they were very close. I can only imagine that she had a great deal of trepidation about telling him. He always was very complimentary to her about how strong she was, and he didn’t know if he could do it without her. For her to be weakened like that, that must have been very difficult conversation for him.
What about her communications with the Senate, with the House, with California? I think she even maybe got a letter from Russia, because there was a relationship there.
KT: Again, she was very aggressive in promoting early detection, and making people talk about it, and making people think about it.
It was interesting, this is also around the time of the first U.S. Soviet Summit, and Nancy Reagan and Raisa Gorbachev did not get along. She was still recovering from the surgery and her mother’s death, which happened just a few weeks after the surgery, when Raisa Gorbachev visits, and it doesn’t go at all well.
As they are driving the Gorbachevs to the airport, Barbara Bush is in the car with Raisa, and she said something along the lines of, “You know, you didn’t say anything to Nancy Reagan about the fact she was recuperating, and you didn’t express any well wishes for them.”
Raisa Gorbachev says, “Well, we just wouldn’t talk about that in Russia,” and she says, “You wouldn’t talk about it if you had an abortion.”
Again, I mean, there was this odd, almost shame around illness and specifically this illness.
KT: You’ve really got to wonder. I mean, just looking at the odds here, how many first families before them had something like this happen and did keep it a secret?
SW: The first and only other breast cancer that I could find was Nabby Adams, who was the daughter of John Adams, and you really have to go back, way back. She was on the frontier. She was treating her breast cancer in 1809 with hemlock paste. There was no staging. The concept at that time was if you open cancer, it escapes.
Her care was really delayed until she eventually came from the New York frontier back to Quincy, Massachusetts. At the recommendation of one of her father’s friends, who is a Declaration of Independence signatory, Dr. Benjamin Rush, he had just returned from Europe, and the thought in Europe was, “Cancer has to come out. She needs surgery.” So, she underwent a pretty brutal mastectomy without anesthesia in her parents’ home, strapped to a chair with belts.
KT: Oh, God.
SW: They basically just cauterized her wounds, and there’s a pretty graphic description. I wrote a piece for The Cancer Letter, and it’s included, about that mastectomy that was recreated from contemporaneous—I mean, the radical mastectomy, although there was anesthesia in 1974, the radical mastectomy was not much different, although more delicate and obviously under anesthesia, by the time Betty Ford had that.
But she died shortly after her surgery, just a few years after surgery, and clearly had metastatic disease at the time of her surgery, because she had had a palpable mass for so long before it was surgically addressed.
I think it does go to when we talk about a president going in for his physical or a First Lady having a procedure, but then where does it end? Does it end with the children? Does it end with aids? Does it end with senators?
I think people are more comfortable, like Dr. Bertagnolli, talking about her diagnosis. People are more comfortable, but then the expectation of what does that lay on them in terms of becoming an advocate.
You both mentioned that Betty Ford and Nancy Reagan became advocates for early detection, but was that something that they really wanted to do, or was that something that was thrust upon them, or is it something they just naturally had to do because it was out there anyway and people were asking them?
KT: Well, I think where you see this role play out again with the Reagans is in 1994 when he is diagnosed with Alzheimer’s. What they decided to do at that moment is for the former president to hand-write a letter to the country, in his own handwriting, so that people could see.
He says, “I’ve had this diagnosis. I am about to go on a long journey, and please pray for Nancy, and pray for my family.”
It was a really remarkable thing to do that was very much informed by both of their experiences with cancer, and they talked about it, and how they felt that they had changed the lives of so many people, and here is this other disease with this terrible stigma that maybe they could help with this time.
Interestingly though, as Reagan goes deeper and deeper into Alzheimer’s, this breast cancer diagnosis is weighing very, very heavily on Nancy Reagan’s mind, because she has a great fear that he is going to outlive her. So, she wants to make sure that there are the financial resources and the legal resources to not only make sure that he is cared for, but that his dignity can be maintained.
ML: Yeah, it certainly did. I think with Betty, you really see that this is something that was unexpected and thrust upon her, but she felt very strongly that she was given this platform as First Lady, and she should use it to make a difference.
You see this with her cancer diagnosis, and then later in life, you see it when she goes public about her substance abuse issues as well. So, for her, she was very, very committed to using her platform to educate the public and help other people, and that was something that was very important to her.
ML: So, specifically in talking about them as a group or together, she talked about them specifically as things that she could use her platform to educate the public about. That’s how she saw that they were all connected, that they were difficulties or hurdles that life had thrown at her, and because she had this public platform, she could educate the public about it and remove stigma, as you say.
KT: In today’s media environment, in some ways, they have no choice, but to confront it publicly. And you’re right. It’s how you handle it from there.
Also, how much of the family really gets dragged into the spotlight with you? I think most of us in the media try to, as much as we can, leave the minor children of the president alone to live as normally as you can, but I mean, you do see it right now going on with the Biden family. Certainly, the president’s son has had horrific struggles with substance abuse, and those are now the focus of a congressional investigation.
So, at least peripherally, that’s one of the issues that is going to be examined very carefully. I just think we are now living in a completely different media environment where this choice, even more than in the Ford’s time or the Reagan’s time, is essentially taken out of the president’s and his family’s hands.
ML: I think it’s no coincidence that Betty Ford was the first First Lady that was public about this. I talked about how it was in her nature, but Watergate played a really big role, too.
It fundamentally changed how the American public interacted with the media, what the media would ask of the president, and what both the media and the public expected of the president. You really see a change in what could be kept public and what would be kept private after the Watergate scandal. I think that’s a big reason that this is why we start seeing more public discussions of these things at that time as well.
KT: Betty Ford was so remarkable in so many ways, not only about what she was willing to share about her personal life, but she disagreed with her husband on an issue, on abortion, for instance. She was perfectly happy to go public with that.
She says, “Just because he’s president doesn’t mean I’ve lost my voice.”
It would drive the White House and the Republican Party a little bit crazy, but by 1976, you see people walking around wearing buttons saying, “Elect Betty’s husband president.”
SW: I think you bring in an important point, which is the support around them. Clearly, both of these women had supportive husbands. Was there any record of how they felt and how they felt about being a wife? We talked about their public persona, but for example, Betty was Betty Bloomer. She was a dancer. She was a modern dancer, and Nancy Reagan was an actress.
So, they both were vain, or had careers that involved their appearance. Was there any evidence of how they felt about their bodies or how they revealed their mastectomy scars to their husbands?
KT: Nancy Reagan sadly ordered her diary destroyed after she died. Reagan’s diaries are still there, but there are little excerpts that do exist. At one point, she does write in her own diary after she decides she’s not going to have reconstructive surgery, she says, “I still haven’t shown Ronnie me—even though he says it doesn’t make any difference, and I believe him, I somehow can’t bring myself to do it yet. I’ll know when the time is right.”
So, it is. It’s a very close marriage, but yes, image, appearance; she was very sensitive about this.
ML: I think it’s a very similar story with Betty Ford. In her autobiography, she writes about sneaking looks under her bandage so she can see the scars herself because, of course, she’s still trying to come to terms with those.
The way that she writes about her own self-image and what she thinks about the surgery is very much tied with her concerns about how Jerry is going to respond to her now that she’s lost a breast.
She has this rationalization in her autobiography where she talks about how, “Well, if he lost a leg, I wouldn’t love him any less. So, I understand that he won’t love me any less because I’ve lost a breast,” but it was very much an emotional thing.
She wrote that, “The one thing that worried me was whether I’d be able to wear my evening clothes again. Jerry said I was silly. If you can’t wear them, cut low in front, wear them cut low in back.”
For her, she was really invested in sharing these concerns about the physical toll and the emotional toll of the surgery with the public in her autobiographies, because she, again, wanted to try to show other women in the country that it was okay and that these were things that she was feeling, that everyone was feeling. That was important to her.
SW: There are Senate testimonies, and there are letters written to the American Cancer Society where women do talk about men leaving them and partners leaving them because of mastectomies and because of breast cancer.
So, I do think we can’t underscore enough that this was a real concern. I think from seeing women in clinic, it continues to be a concern today of, “What is that, and how is something that is such a part of my body not part of it anymore? How will the public react, and how will I react when I see it for the first time in the mirror?”
Which varies based on patients, for sure.
Well, I want to go ahead and open up for any questions. Did you have any questions, Alex or Katie?
SW: Dr. Fisher is a very interesting figure that plays into both of these women’s lives. He was a Pittsburgh surgeon who was head of the National Surgical Adjuvant Bowel and Breast Project, which was a division of the NCI that was looking at surgery for breast cancer and colon cancer.
He actually did some of the seminal trials in breast cancer research, most notably the surgery that showed that the radical mastectomy was unnecessary. He faced tremendous backlash. He was going against a lot of experts in the field that really believed that the radical mastectomy was necessary for women and without it, women would die.
He, despite that, overcame those very strong adversaries and completed many trials in breast cancer, including the trial that showed that chemotherapy could be given for breast cancer.
He also did the trial looking at breast conservation or lumpectomy plus radiation is the same as mastectomy. He did the first prevention trial using Tamoxifen to prevent cancer in high-risk women and did some of the trials looking at not needing an APR or not needing a colostomy for rectal cancer.
So, he really was a force in surgery and really was at the post of each one of these women’s cancer diagnoses.
KT: Not that I know of, because they despised each other.
Well, let’s explain. This goes at least as far back as the 1976 presidential campaign when Ronald Reagan audaciously challenges a sitting president for the Republican nomination and…
ML: The first time this had happened in decades, it should be said, right?
KT: This epic fight between Ronald Reagan and Gerald Ford goes on right into the Republican Convention. Going into the convention Ford still didn’t have enough delegates nailed down to fend off Ronald Reagan until they actually get to the convention floor.
So, the two spouses lived through this campaign, and I think they never really put it past them. Though interestingly enough, when Ronald Reagan gets the nomination in 1980, and there are still people who have doubts whether this movie actor is up for the job, there is a proposal being floated by their two advisors that Ford actually come on the ticket and run as Reagan’s vice president.
The two people who absolutely hated this idea the most were Nancy Reagan and Betty Ford. At one point, Reagan’s political consultant calls Betty Ford and says, “Have you heard this idea? What do you think?”
She said, “I’ve told my husband I will divorce him if he does this.”
Anyway, sorry to take a little political detour here.
KT: Well, I do think with Nancy Reagan, it was the criticism that she got from people who thought they could make her choices better than she could.
SW: I think that that is not uncommon in patients today who share their cancer diagnoses, the different well-meaning supporters who talk to people about this way or that.
I hear patients struggle with, “Well, I don’t know,” and, “Should I go here, or should I go there? Should I do this, or should I do that?” So, I think that there is a positive, but I think that there are downsides. All of us who have cancer patients and survivors in our lives can relate to that as well.
ML: That is a really good question, and I actually don’t have the numbers, so, I can’t answer that question. But again, with the 50,000 letters and 15% bump in people doing breast exams, it certainly, probably is not a small number.
KT: Well, I do think for people in public life, the option of keeping things secret is just no longer an option. So, I think that the question always becomes how you handle it from there, and I do think that both of these women admirably decided that they were going to do as much as they could to help other people.
ML: I think you really can see how it’s changed, just in how people understand what cancer is and what breast cancer is.
When Betty Ford was diagnosed, we mentioned the press conferences, but there were columns in The New York Times explaining what was happening, and what all these different words meant, and what the procedures could be. So, just how people understand what breast cancer is has changed so much in the intervening decades.
SW: I think there is a lot more conversation too about the symptoms that go along with a cancer diagnosis. For these women, just sharing the cancer diagnosis was enough, but there really was not a lot out there, except for these personal letters that they received, where women were really going person to person.
I will say there was an organization who was not allowed to come into some of the largest cancer centers in the country in the ’70s and ’80s to talk to women about lymphedema, to talk to them about taking care of their arm, and the surgeons thought that if these women came in and started educating women about side effects, that they would have these side effects.
There was this, “Don’t make the suggestion because then they’ll start complaining.”
So, really, accepting that there were side effects and, “Here are some things that could be done,” was a grassroots movement of other women saying, “Hey, here’s how you get mastectomy supplies.”
I do remember, I think from your book, Karen, that Nancy Reagan had a woman come in and fit her for a mastectomy prosthesis and then said, “My business is up 1000% because of you.”
So, women were looking for those things, but I think it was more of a grassroots movement after—these women were on diagnoses—then, I think the next movement was dealing with side effects and the personal side of cancer as well.
KT: That’s right.
KT: Thank you so much.
ML: Absolutely. Thank you.
