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Journal of Clinical Oncology, Vol 21, No 9S (May 1 Supplement), 2003: 122s-124s
© 2003 American Society for Clinical Oncology


SURVIVORSHIP ISSUES

First, You Cry, 25 Years Later

Barron H. Lerner1

1 From the Department of Medicine and Public Health, Columbia College of Physicians and Surgeons, New York, NY.

Address reprint requests to Barron H. Lerner, MD, PhD, Columbia College of Physicians and Surgeons, Box 11, 630 West 168th St, New York, NY 10032; email: BHL5{at}columbia.edu.

SOME OF the letters that NBC television correspondent Betty Rollin received after writing her breast cancer memoir, First, You Cry, were downright hostile. An Illinois woman wrote that Rollin must have no brain "if being able to wear a strapless dress or a bikini is the biggest deal in your life."1 A Missouri woman fumed that society’s obsession with the body caused women like Rollin "to worry more about losing a breast than dying."2

That Rollin’s 1976 book generated such an antagonistic response from certain readers is not surprising. In the mid-1970s, breast cancer was perceived very differently than it is today. There was no National Breast Cancer Coalition or Race for the Cure that encouraged women to talk about, and raise funds to control, the disease. Indeed, it was only in 1974 that breast cancer came out of the closet, with the highly public diagnoses of First Lady Betty Ford and Happy Rockefeller, wife of vice-president-designate Nelson Rockefeller. Mammography, which helped detect smaller breast cancers, was just coming into use when Rollin was diagnosed in 1975. Most women diagnosed with the disease were still treated with a radical mastectomy, an extensive and disfiguring operation that entailed removal of the cancerous breast, underarm lymph nodes on the affected side, and the chest wall muscles underlying the breast.

Women who qualified for radical surgery were expected to consider themselves lucky. As one surgeon told Jimmie Holland, a psychiatrist who became a specialist in treating the emotional aspects of cancer, a breast cancer patient just needed to stuff an old stocking in her bra and get on with her life (J. Holland, MD, personal communication, February 25, 1999). While crude and insensitive, this remark bespoke the common view that in the fight against such a dreaded disease, both patients and their doctors needed to be soldiers.3

It was this mentality that Rollin, who has just published a 25th anniversary edition of First, You Cry, directly challenged. Upon learning that she would need breast surgery, Rollin openly contemplated the effects that the operation was likely to have on her looks, self-esteem, and sex life. Far from being grateful that she was about to undergo a potentially curative operation, Rollin urged her surgeon to do everything possible to maintain her appearance. "I am vain," she told him. "I would like to not be very hideous if that’s possible."4 After the surgery, Rollin dealt openly with the grieving process that may accompany loss of a breast. When she first looked at her mastectomy scar, she informed readers, she felt "ugly and freaky."5 Rollin also described how her disease had wreaked havoc with her personal life. Shortly after her operation, she left her husband and began an intimate relationship with another man.

Certain women and physicians were appalled that Rollin was concerned with breasts and sex in the face of cancer. Such concerns, it seemed, confirmed stereotypical views of women’s vanity. Avoidance of adequate surgery due to "feminine whims," warned one surgeon, might result in a "dead woman with a somewhat more pleasant-appearing chest wall."6 The fact that Rollin was a childless career woman may have made her behavior seem that much more offensive to some critics.

But even as of 1976, times had begun to change. Rollin received many more letters praising her book than criticizing it. Rollin’s brutally frank and often funny descriptions of her postmastectomy travails resonated vividly with other breast cancer patients. For the first time, wrote one correspondent, she had read about a woman "who had the same crazys I had."7 A California woman admitted that she, too, had stood in front of her mirror and said "you ugly thing."8

Meanwhile, other women with breast cancer, such as Maryland journalist Rose Kushner, had begun to write about their encounters with the disease. Many of these women also attacked radical surgery, but from a medical point of view. Early results of research studies, they noted, suggested that less extensive procedures—which removed only the breast or even just the cancer—led to survival rates equivalent to those of the radical mastectomy. At the very least, it was argued, women needed to know that smaller operations were an option. As the radical mastectomy was finally replaced by operations that left the chest muscles in place, breast reconstruction also became feasible for cancer survivors. Once again, the first group of women who pursued such an option were seen, by some, as vain, but reconstruction has since become accepted for patients who require breast removal.

Rollin herself underwent bilateral reconstruction after having a second mastectomy for breast cancer in 1984. In a new epilogue to the 2000 edition of her book, Rollin is quite pleased with the results of this operation. Sounding as irreverent and frank as she did 25 years ago, she likens her "brand-new pair of breasts" to "little waterbeds." Because they stay up by themselves, she explains, "I never wear a bra. Bliss!"9

But interestingly, the main point that Rollin has come to emphasize over the years is the relative insignificance of her missing breasts. "Losing a breast is not so bad," she writes in the recent epilogue. "It only seemed so at the time."9 This statement echoes Rollin’s thoughts in a 1980 article, when she chided her earlier concerns about being unable to wear a strapless dress.10 Indeed, Rollin had already begun to consider this perspective at the end of the original First, You Cry. Writing, memorably, that surgery had left her with a "dent in my fender," she nevertheless noted that she was the same car that she had always been.4

So why has Rollin, after having courageously proclaimed that it was acceptable—indeed, appropriate—for breast cancer survivors to consider the effects of cancer on their attractiveness and sex lives, downplayed this theme over time? The second edition of Rollin’s book does not explicitly answer this question, but many women who wrote to her explained why they had put aside concerns about appearance. "A breast is a small price to pay for the rest of your life," explained one Massachusetts woman in 1976.11 "I’d lose whatever I had to lose before I die," wrote another correspondent.12 In this way, sacrificing one’s breast became seen as a type of quid pro quo for surviving breast cancer. This notion of a calculus—accepting dramatic or disfiguring therapy in exchange for life—extended to treatments other than surgery. One woman urged Rollin to "get yourself to a cancer clinic and have them give you chemotherapy for a year or so and then quit worrying."13

Of course, no such calculus exists. Women who undergo highly aggressive treatment for breast cancer may die. Definitive data now exist indicating that less disfiguring surgery, such as lumpectomy, results in a mean survival for early disease equivalent to that of mastectomy.14 Yet the idea of trading discomfort, unattractiveness, or disfigurement for long-term survival retains considerable currency. Studies have shown that women are willing to undergo additional chemotherapy in exchange for a 0.5% to 1% chance of lengthened survival.15 Some women who test positive for BRCA mutations are opting for bilateral prophylactic mastectomy, even though they may never die from—or even develop—breast cancer. "Your breast or your life?" provocatively asks one recent magazine article on this topic.16

It seems only natural that long-term survival from a dreaded disease might make earlier concerns about one’s appearance and sexuality seem trivial over time. As Rollin writes in the new epilogue, she and other women who have survived breast cancer "keep waking up every morning."9 Having twice confronted her own possible mortality from the disease, she adds, "I appreciate not dying."9

But it would be a pity to lose the message that Rollin drove home so forcefully and courageously in the original version of First, You Cry: beyond survival, every woman confronted with breast cancer has her own priorities. She may decide to keep her breast or insist on its removal; she may pursue or decline reconstruction; she may refuse chemotherapy or seek out experimental treatment. As much as possible, physicians should respect such wishes. As one 77-year-old woman who had undergone a mastectomy in 1977 told Rollin: "You would think that I wouldn’t be so vain! But that’s the way it is."17


    ACKNOWLEDGMENTS
 
This piece draws on the author’s book, "The Breast Cancer Wars: Hope, Fear and Pursuit of a Cure in 20th Century America," published by Oxford University Press, May 2001.


    NOTES
 
The author received funding from the Robert Wood Johnson Foundation, the Angelica Berrie Gold Foundation, and the Burroughs Wellcome Fund.


    REFERENCES
 TOP
 REFERENCES
 
1. S.I. to Betty Rollin, December 16, 1977. Betty Rollin Papers, Historical Society of Wisconsin, Madison, WI, Box 7, Folder 2

2. K.H. to Betty Rollin, December 14, 1977. Betty Rollin Papers, Historical Society of Wisconsin, Madison, WI, Box 7, Folder 3

3. Lerner BH: The Breast Cancer Wars: Hope, Fear and the Pursuit of a Cure in 20th Century America. New York, NY, Oxford University Press, 2001

4. Rollin B: First, You Cry. New York, NY, J.B. Lippincott, 1976

5. How two women are coping with breast cancer. Harper’s Bazaar, September 1976, pp 149, 177, 186

6. Ariel IM: The treatment of breast cancer by radical and super radical mastectomy. Resident & Staff Physician, September 1978, pp 57–62

7. M.F. to Betty Rollin, no date. Betty Rollin Papers, Historical Society of Wisconsin, Madison, WI, Box 6, Folder 8

8. F.F. to Betty Rollin, October 1, 1976. Betty Rollin Papers, Historical Society of Wisconsin, Madison, WI, Box 6, Folder 8

9. Rollin B: First, You Cry. New York, NY, Quill, 2000

10. Rollin B: The best years of my life. New York Times Magazine, February 1980, pp 36–37

11. C.P. to Betty Rollin, September 17, 1976. Betty Rollin Papers, Historical Society of Wisconsin, Madison, WI, Box 6, Folder 6

12. M.C. to Betty Rollin, September 21, 1977. Betty Rollin Papers, Historical Society of Wisconsin, Madison, WI, Box 6, Folder 4

13. B.B. to Betty Rollin, August 12, 1976. Betty Rollin Papers, Historical Society of Wisconsin, Madison, WI, Box 6, Folder 7

14. Fisher B: The revolution in breast cancer surgery: Science or anecdotalism? World J Surg 9:655–666, 1985[CrossRef][Medline]

15. Ravdin PM, Siminoff IA, Harvey JA: Survey of breast cancer patients concerning their knowledge and expectations of adjuvant therapy. J Clin Oncol 16:515–521, 1998[Abstract]

16. Lynden P: Your breasts or your life? American Health, June 1997, pp 29–31

17. M.L. to Betty Rollin, January 11, 1977. Betty Rollin Papers, Historical Society of Wisconsin, Madison, WI, Box 6, Folder 6

INVITED COMMENTARY

Betty Rollin2

2 National Broadcasting Company, Inc New York, NY

I was stunned to read, at the start of Dr Lerner’s insightful piece, about the (sprinkling of) hostile mail I received when First, You Cry was first published. It’s true, but I had forgotten about it in the wave of subsequent mail and telephone calls—and being stopped in the street—expressing the opposite. For 25 years women have told me how much the book meant to them, how much it helped them get through the trauma of breast cancer. In no way did I expect this, or feel deserving of their gratitude. I’m a writer and I simply took advantage of a bad break in life and told as honestly—and, frankly, entertainingly—as I could what it was like when you’re young and breast cancer hits. It never occurred to me that this would be helpful. I now realize the obvious explanation: in reading my book, women felt less alone, not only with their disease but with the accompanying feelings about it. Dr Lerner quotes a very typical letter from the woman with the "crazys." "I thought I was the only one who [felt this way or that way]" was—and is—the recurring theme of what I call my "me-too mail."

We all try to be brave when something like cancer happens. I wasn’t brave. I think, in a sense, I gave a lot of women "permission" not to be brave, either—and I think my vanity gave them permission to be vain. I think that made them feel better too.

Subsequently, of course, you get over it. But, first, you cry. That’s normal. When the book was re-issued, I re-read it and I was surprised at what a fuss I made about that breast. Of course I was young and in a shaky marriage and—this was 1975, remember—I didn’t know anyone else who was missing half her chest. But I have had a new, recent insight: I think focusing on the breast was a way of not focusing on the much scarier fact of cancer. I think my vanity was partly denial. When I was ready to face the fact that I had had—and may still have—a deadly disease, the loss of the breast loomed less large.


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