As I write these pages, journalist Katie Couric and the current NCI director, Dr. Monica Bertagnolli, both announced their breast cancer diagnoses. Couric publicly navigated her husband’s diagnosis and death from colon cancer, and the impact of her on-air colonoscopy on normalizing this awkward test to screen for colon cancer cannot be underestimated. Decades before, Barbara Walters shocked her audience when she demonstrated how to perform a self-breast examination (fully clothed) on the Today show.
Celebrities publicizing their cancer screening tests have become common: Jimmy Kimmel holding Couric’s hand as he prepares for a colonoscopy, and Ryan Reynolds admitting he was a year late but sharing his procedure with his millions of Instagram followers. More recently, several female television anchors have received their diagnosis in real time, including ABC news correspondent Amy Robach who underwent her first mammogram on air and was diagnosed with breast cancer. Steve Jobs’ choice of alternative treatments for his pancreatic cancer and Senator John McCain’s rapid death from an aggressive brain tumor played out in public view.
The celebrity approach to cancer is important, and the American public is paying attention.
On May 14, 2013, Angelina Jolie shared the news of her bilateral mastectomies. She did not have cancer but removed her breasts out of caution based on her high likelihood of developing cancer due to the detection of a genetic mutation called BRCA-1.
A group in the United Kingdom recently published a study looking at the “Angelina Jolie effect” on women diagnosed with breast cancer choosing to remove their non-cancerous breast due to perceived risk reduction.[i] The results were astounding. The rates of contralateral mastectomies doubled from the period before Ms. Jolie’s announcement (“pre-AJ”) to after. The decision to remove an unaffected breast was multi-factorial but, controlling for other factors, the trend remained strong especially in younger women. Physicians, this study suggests, are not the only voices patients hear.
In fact, breast cancer history is closely tied with the treatment of the most prominent non-elected political person in the country, the First Lady.
Abigail “Nabby” Adams Smith
The first account of breast cancer associated with an American president is Abigail “Nabby” Adams Smith, the beloved only daughter of John and Abigail Adams. Nabby married John Smith, her father’s secretary, while Mr. Adams was serving as ambassador to England.
After returning to the U.S. with Nabby, John Smith made and lost several fortunes, eventually ending up in near poverty on a farm in western New York. Far from the intellectual and social stimulation of her parents’ home in Quincy, Massachusetts, Nabby capably ran a large, frontier homestead. Sometime in 1810, Nabby felt a mass in her right breast.
Barriers familiar to rural patients of today—scarcity of trained medical professionals, poverty, and her own denial—prevented her from seeking treatment at first.
Despite applying hemlock paste to her breast and taking oral hemlock supplements as recommended by her local practitioner, the mass continued to grow, eventually becoming “harder with a little pink at times on the skin.” She wrote to her mother in February 1811 that she feared the mass was cancer. [ii]
Upon receiving her daughter’s letter, Abigail consulted physicians in Boston, who concurred with the prescribed hemlock treatment. As her daughter’s breast pain increased, however, Abigail began lobbying for her immediate return to Quincy, a grueling three-hundred-mile journey.
Nabby finally arrived in June 1811 and consulted several local physicians. All again agreed that observation was best, reserving surgery only if the mass became “enflamed.” Satisfied and desperately wanting to avoid a frightening surgery, Nabby prepared to return home.
For unknown reasons, she made one last contact, writing at the end of the summer of 1811 to family friend, physician and Declaration of Independence signatory, Dr. Benjamin Rush.[iii] Dr. Rush had recently returned from a medical tour through Europe and replied to her letter through her father saying, “Let there be no delay in flying to the knife. Her time of life calls for expedition in this business.” The recommendation of a trusted family friend carried great weight, and Nabby consented to the painful surgery she had desperately wanted to avoid.
The operation took place on Oct. 8, 1811, in her parents’ home with her family present providing support. A team of Boston’s most preeminent surgeons arrived a day early and explained to Nabby and her family the horrifying procedure. The surgeon offered no alternative.
Although there is no record of the surgery, historian James Olson describes the scene based on contemporaneous accounts.[iv]
After slipping off her sleeve to expose her breast, male assistants dressed in frockcoats, belted her waist and legs to a chair. Her family restrained her shoulders and neck while the surgeon moved into place:
The operation took less than 30 minutes, but her mother and sister spent hours dressing her wounds.
She stayed with her parents for the rest of the summer, slowly recovering from the brutal procedure. She eventually returned to New York, but within a few months she developed bone pain and headaches.
Nodules eventually appeared along the mastectomy scar, and it was clear that her cancer was back. Determined to die with her family in Quincy, Nabby convinced her husband to bring her home, enduring unimaginable pain as the carriage bumped and crashed over the primitive roads.
When she finally arrived, her mother was shocked at her daughter’s emaciated appearance. Nabby died on August 9, 1813, less than two years after her brutal surgery. John Adams wrote to his friend Thomas Jefferson:
Stories of breast cancer treatment and (mostly) failures in women of privilege form a long ribbon through history, and we can only imagine the horror of treatment in those less fortunate.
As we now know, by the time Nabby was strapped to a chair, breast cancer cells were likely present in the rest of her body. Perhaps had she presented in 1809, when she first discovered the lump in her breast, the surgery, still incredibly brutal, may have cured her.
Instead, like so many women saddled with household responsibilities, she followed the advice available to her, using topical salves and natural treatments for years before seeking the care of a physician. As so many women before and after her, understandable trepidation surrounding the brutality of cancer treatment also likely led to denial, until the cancer finally asserted itself as a problem that could no longer be ignored.
Only a few decades later, Dr. William Halsted would synthesize the recommendations of European and American surgeons into the Halsted radical mastectomy. Offering a more refined technique than what Nabby Adams endured, he provided little evidence that patients undergoing the Halsted mastectomy lived much longer.
The radical mastectomy did, however, secure a future for women that included disfigurement with concave chests, chronic pain and swollen arms, necks, and bodies caused by disrupted blood flow. Despite this, the Halsted radical mastectomy reigned as the established treatment for breast cancer from the mid 1880’s through the diagnosis of another famous woman over 160 years after Nabby Adam’s death.
Betty Ford
Far from a frontier wife, First Lady Elizabeth “Betty” Ford was undergoing a routine physical exam at Bethesda Naval Hospital (now known as Walter Reed Medical Center) when her gynecologist felt a mass in her right breast. Just weeks into the presidency and days after announcing the pardon of Richard Nixon, President Ford faced the prospect of losing his wife. Mrs. Ford underwent a radical mastectomy on Saturday, Sept. 28, 1974.
The following Monday, her surgeon called the president with her pathology report while her gynecologist met with Mrs. Ford. The prognosis was “good,” although two out of thirty lymph nodes removed were positive. Mrs. Ford remained in the hospital for almost two weeks while her husband continued to pick up the pieces of the presidency and heal a wounded country.
While the President and First Lady were discussing her pathology report, a research conference on breast cancer convened at the NIH, across the road from her hospital room. Dr. Bernard Fisher presented data on the positive effects of adjuvant treatment of breast cancer with two years of an oral chemotherapy pill called L-PAM. The effect was particularly strong in pre-menopausal women.
The morning of the conference, Jane Brody of The New York Times noted that Dr. Fisher and Dr. Paul Carbone of the National Cancer Institute met with Mrs. Ford’s physicians to discuss her case.[vi] Unlike the months-long recovery of Nabby Adams, Mrs. Ford was almost immediately active after her surgery, responding to letters and meeting with her husband, children, and staff. She performed a “spider walk” with her fingers up the wall to increase her arm motion and celebrated when she could lift a teacup for the first time. Her husband brought a game ball from the Washington Redskins-Denver Broncos match-up that weekend as a gift from the Redskins coach. To the shock of her husband and surgeon, she spontaneously drew her arm back and threw a pass to her husband, much to the delight of the press who captured the photo.
Mrs. Ford was discharged two weeks after her surgery and despite involvement of her lymph nodes, her doctor noted in a press release, “Mrs. Ford’s progress to date has been excellent and her outlook for prolonged good health is extremely favorable.” She would, however, receive L-PAM based on the results of Dr. Fisher’s trial. “It was on a Sunday night that Dr. Lukash brought up a little brown bottle of pills for the first time,” Mrs. Ford recalled in her autobiography, The Times of My Life: “I was upset. I thought, every time I look at these pills it’s going to remind me of the fact that I’ve had cancer. Also, I’d heard so many dreadful tales about chemotherapy…Then I pulled myself together.” For five days every five weeks for two years, she took chemotherapy with no ill effects. With her characteristic honesty, Betty Ford shared her diagnosis with the American public and was rewarded with love and appreciation.
The other study Dr. Fisher presented that fall weekend in 1974 would have an even greater impact. At the meeting, Dr. Fisher presented the initial results of NSABP (National Surgical Adjuvant Breast and Bowel Project) B-04 which showed that modified radical mastectomy was equal to radical mastectomy in the treatment of breast cancer. When finally published in 1981, this seminal trial would provide the deadly blow to the Halsted radical mastectomy. Momentum had been building around less surgery for breast cancer. In fact, in the press conference following Mrs. Ford’s surgery, journalists questioned her surgeon, Dr. William Fouty, regarding the choice of a radical mastectomy:
Q: Does the removal of these muscles under the arm cause any sort of permanent — I don’t like to use the word “crippling”– does that mean there will be a permanent weakness there of any sort?
DR. FOUTY: No.
Q: If I could go back to a question earlier. This is the most serious mastectomy, the most extensive mastectomy?
DR. FOUTY: No, it is not the most extensive mastectomy, and it is not the most serious. It is a standard way of dealing with carcinoma of the breast that has been well accepted through the years.
Q: She was told of the different procedures that were possible and was she told some doctors believe that simple mastectomy may be enough?
DR. FOUTY: Yes.[vii]
Happy Rockefeller
The first patient to benefit from B-04 might have been another new face in Washington, Second Lady Happy Rockefeller. The wife of former New York Governor and new Vice-President, Nelson Rockefeller, Happy felt a mass in her left breast in early October as news of Mrs. Ford’s cancer spread. Returning to her long-time gynecologist in New York City, her initial work-up included the latest in breast imaging, a mammogram. Her mammogram showed several masses, and she was referred to Memorial Sloan Kettering Cancer Institute where her brother-in-law was on the board.
There, the recommendation was different from the one First Lady Ford had received. The surgeon recommended a modified radical mastectomy, leaving the pectoralis muscle behind and providing an equal chance of cure.[viii] She underwent this procedure on Friday, Oct. 18 and recovered well. Dr. Devita, who consulted on her case and recommended treatment with chemotherapy like Mrs. Ford, commented that “Happy Rockefeller received no further treatment because she was operated on at Memorial Sloan Kettering, where the surgeons still thought we were nuts. Fortunately for her, her cancer did not recur.”[ix] In just three short weeks in the fall of 1974, everything changed in breast cancer treatment of the two most prominent women at the time.
While physicians debated treatment, women were listening. Recovering in the hospital, Betty Ford realized the power of the First Lady: “Lying in the hospital thinking of all those women going for cancer checkups because of me, I’d come to recognize more clearly the power of the woman in the White House. Not my power, but the power of the position, a power which could be used to help.”[x] The decision to go public with her diagnosis and mastectomy was not only practical politically with a press and public still sensitive to any whiff of a cover-up, but also demonstrated a new job for the American First Lady.
In the years that followed, the NSABP under the leadership of Dr. Fisher unleashed the power of the clinical trial on breast cancer, enrolling thousands of women across North America in practice-changing randomized clinical trials. Fueled by the feminist movement of the 1970s and an increasing sense of bodily autonomy, women diagnosed with breast cancer in the late 1980s now had a choice of which surgery and the time between biopsy and surgery to think about it and discuss with their families.
Nancy Reagan
It was into this new reality that First Lady Nancy Reagan underwent a routine, screening mammogram, which showed a small mass in her breast on October 5, 1987. With her husband amid Robert Bork’s controversial Supreme Court nomination and a planned State Visit from the Crown Prince and Princess of Japan, the Reagans kept her diagnosis quiet, and, with the approval of her physicians, pushed off her surgery for a few weeks.
Despite early detection, and informed by a trusted family friend, prominent Mayo Clinic surgeon Dr. Oliver Beahrs, that she could have a lumpectomy or a mastectomy, Mrs. Reagan decided to undergo a modified radical mastectomy and to have it done without a biopsy first, in the old “single stage” procedure where biopsy and surgery are performed at the same time while the patient is under anesthesia. “I chose the mastectomy. A lumpectomy seemed too inconclusive, and I know, given my nature that I’d be worried to death…Besides, a lumpectomy entails weeks of radiation on an almost daily basis. In my job, there is no way I can do that.”[xi] The daughter of a surgeon, Nancy chose the option that felt best to her and fit her other obligations.[1]
She underwent a modified radical mastectomy on October 17, 1988, remarking to her husband after her surgery, “They took my breast. I feel sorry for you.” President Reagan, brushing aside her concerns, joked, “That’s all right, honey. I’ve always been a leg man myself.”
Thirty-six thousand letters poured into her hospital room along with well wishes and flowers from around the world, including calls from Mrs. Ford and Mrs. Rockefeller. She recuperated at Walter Reed, spending less than a week in the hospital “dragging around the suction machine,” and after returning home, she performed the recommended arm exercises with vigor and was fitted for a prosthesis and bra by a professional who shared that her “business had increased after [Mrs. Reagan’s] mastectomy.”
Since her tumor was small, Mrs. Reagan required no further treatment, and, in her mind, the whole matter was behind her. She would not presume to make that decision for other women and only pushed the message that women should get screening mammograms. Immediately following the announcement of her diagnosis, calls to mammography centers across the country spiked. Women in America were watching. Prominent physicians and women’s groups across the country, however, bemoaned her decision to undergo a mastectomy and Op-Ed pieces lambasted her in newspapers across the country.
News of Nancy Reagan’s treatment choice sparked a media frenzy with headlines declaring “Mastectomy Seen as Extreme for Small Tumor,” and prominent breast cancer advocate Rose Kushner declared that Mrs. Reagan’s decision had “set us back 10 years.”[xii] Forced to defend her decision in public and distraught over the recent death of her mother, she finally appeared on ABC News’ 20/20 in 1988. There she stated plainly her reasons for choosing a mastectomy: “I couldn’t possibly lead the kind of life I lead, and keep the schedule that I do, having radiation or chemotherapy. There’d be no way,” Mrs. Reagan said pragmatically. “The important thing is that every woman should have an annual mammogram. That’s the message I want to get out. What they decide after that, if they find a problem, is up to each individual woman.”
Analysis of population data from that time supports the fears of her critics. A review of breast surgeries in American women following Mrs. Reagan’s diagnosis showed that the rate of lumpectomy dropped 25%, most notably in white women with lower levels of income and education.[xiii] And what was the response of Dr. Fisher to this very public dismissal of breast conservation? Like most prominent physicians at the time, he did not judge the First Lady’s choice, commenting to Time magazine that he was certain most women knew what their choices were. He believed in women, and again he was right: the rate of lumpectomies swiftly returned to normal by the end of that year.
Now, two hundred years after Nabby Adam’s death, we have come so far in the diagnosis and treatment of the disease that took her young life. More women in the public eye would be diagnosed and survive—Gloria Steinem, Sheryl Crow, Martina Navratilova, Olivia Newton-John, Wanda Sykes, Kylie Minogue, Julia Louis-Dreyfuss—and countless others who chose to keep their diagnosis private.
The list of prominent women keeps growing, so that now announcements cover just a few days of the front page rather than inspiring a breathless group of reporters to post outside Bethesda for two weeks. And their impact on clinical care continues to evolve—for the good and not. Suzanne Somers’ controversial book Knockout, released in 2010, for example, promoted unproven alternatives to chemotherapy, as she describes in her preface, “to escape the degrading and humiliating treatments offered by oncologists. My choice overwhelmingly would be to use only alternative treatments regardless of what kind of cancer I contracted.” American Cancer Society President Dr. Otis Brawley pushed back: “Some people confuse what they believe with what they know.”[xiv]
The decision of how and what to communicate to a now worldwide audience is a difficult tightrope to walk with overwhelming outlets for medical information. Sharing/oversharing is a fine line that overall is an individual decision. The fact that each may not communicate what we the scientific community think is important, should not be placed on the head of an unwitting victim. Public figures can continue to use the moments in front of screens and microphones to push the message of early detection and treatment efficacy no matter who the next lady at the mike is. How can we remain open to the messengers allowing for the positive influence of normalization while also practicing grace as each picks her way through public, uncharted territory?
[1] This was not the Reagans first experience with cancer while in the White House. Just months prior, President Reagan had undergone a colonoscopy to investigate the cause of his long history of anemia. A large colon cancer was discovered and resected the next day. Despite receiving no adjuvant treatment, President Reagan remained cancer-free. Nancy insisted that his diagnosis be kept secret from the press.
