Leonore Dvorkin Talks about Cancer
Q: Leonore, what was your primary goal in writing your book Why I’m Glad I Had Breast Cancer?
Actually, I had several goals in mind. I wanted a detailed written record of all that I had gone through. I hoped that a written account of my experience and emotions might help my family and friends better understand why I had chosen my particular course of treatment. Most of all, I wanted to tell other women and their loved ones how it’s at least possible to consider the experience of breast cancer and a mastectomy a net gain.
Q: How did you view or feel about cancer before you yourself contracted it?
I was born in 1946, and thus grew up at a time when cancer of all sorts was shrouded in mystery, much feared, and seldom if ever discussed in public. Many people falsely assumed that cancer was contagious, and it was generally considered a death sentence. I too saw cancer as something mysterious and terribly frightening, at least until I was well into adulthood and better educated regarding ever-improving treatment options and survival rates. Also, it helped me a great deal to gradually become acquainted with numerous people who had survived cancers of various sorts and who had gone on to lead full, productive lives.
In recent years, the Web has greatly accelerated the spread of information about cancer and other diseases and physical conditions. When I was diagnosed with breast cancer (specifically, DCIS, or ductal carcinoma in situ), it was primarily the information I found in books and on the Web that convinced me that a mastectomy would be the wisest, safest course of treatment.
Q: How did you feel after your diagnosis with breast cancer?
Between the emergence of my first symptoms and my eventual diagnosis, a period of several months elapsed. Given my various symptoms, the diagnosis was not that much of a shock to me. Virtually as soon as I heard the word “cancer,” I was filled with a powerful desire to be rid of the alien mass of cells inside me, no matter what that might require. After the diagnosis, it took me only a few days to read up on DCIS, and then to decide in favor of a mastectomy.
This is not to imply that I was brave, calm, and rational from start to finish. After all, I had a potentially life-threatening disease, and I had no idea how painful or traumatic it would be to have my entire breast removed. Just as they are for anyone faced with a serious disease, my emotions were all over the map. At various times, I felt fear (mainly of dying), self-pity, bewilderment, anger, and resentment. Those emotions are perfectly natural in such a case. All one can do is accept them and then try to work through them. One also needs to realize that the working through may take a very long time: not just weeks or months, but years. In my case, the fear was the last to fade.
Q: Exactly how afraid were you when you were given the option of a mastectomy? What helped you to combat your fear?
My surgeon, Dr. Elizabeth Brew, gave me two treatment options: a lumpectomy plus several weeks of daily radiation treatments, or a so-called simple mastectomy. The latter is the removal of the entire breast along with a sampling of the lymph nodes in the armpit, to make sure they are clear of cancer, but with no removal of the underlying pectoral muscle tissue. With a mastectomy, I could be all but certain of being able to avoid both radiation and chemotherapy. I chose the mastectomy based on several factors, which I detail in Chapter 3 of my book.
Of course I feared the physical pain of a mastectomy and then rehabilitation, but I felt very strongly, and still feel now, almost eight years later, that I made the right choice. I was convinced by all I had read, as well as by what Dr. Brew had told me, that a mastectomy would best protect me from more, future cancer, at least on the left side of my chest.
Q: For a woman, what is it like to lose a breast?
That varies a great deal depending on numerous factors: the woman’s age at the time of her mastectomy, whether or not she has a loving and supportive spouse or partner, how important her breasts are to her as a part of her self-image as a woman, how much her breasts mean to her and her partner as part of their sexual relationship, and so on.
For many women, especially those in societies that lay a great deal of emphasis upon the breasts as part of one’s sexuality, the very idea of losing their breasts is nightmarish, tremendously traumatic. How else to explain why all too many women neglect or put off having annual mammograms, or why some women avoid going to the doctor even when they have clear and alarming symptoms, sometimes waiting until the cancer has progressed so far that their lives cannot be saved? There are even those women who say, in all seriousness, that they would rather die than lose their breasts, and so they do. That’s not an attitude I share, obviously, but it’s one I must acknowledge as part of reality.
Having observed my own reactions and having read numerous letters sent to me by readers of my book, I’ve concluded that the women who are able to deal most calmly with the loss of a breast, the ones who are comfortable thereafter with wearing prostheses or even going flat-chested versus having breast reconstruction, seem to be those who are older, smaller-breasted, and not particularly feminine in a conventional way. They also tend to have very supportive, accepting spouses or sexual partners.
That’s how it was for me. I was 52 at the time of my mastectomy (August 11, 1998), with very small breasts, and much more concerned with preserving my overall health than with keeping my left breast. It’s important to note that I’ve always valued my intellect and my physical strength a great deal more than my breasts as part of my overall self-image. Also, I’ve been married since the age of 21 (since April 9, 1968) to a wonderful, loving, supportive husband. A woman’s breasts, either mine or anyone else’s, have never been very important to David. His unusual attitude is detailed in Chapter 12 of my book.
Q: Speaking from your own experience, what role can a husband play in helping a woman cope with losing a breast? How can he give her courage for the physical and emotional difficulties ahead?
If his wife’s breasts have always been an important part of what makes her physically attractive to him, then the husband is also going to feel negative emotions like loss, sadness, and resentment, a sense of having been cheated by fate. He will have to make his own gradual and perhaps difficult emotional adjustment to his wife’s altered body.
But if the love between the spouses is deep and real, if it is based upon more than mere physical appearance and sex, the two of them can surely make any needed adjustment. After all, how would they feel if one of them were to lose any other body part, such as an arm or a leg? Would that cause their love to die? Surely not!
In fact, in many cases, one partner’s physical infirmity and emotional suffering can actually bring about new depths of love, caring, support, and gratitude. Physical changes that might have been considered nightmarish when viewed only in the imagination can become the catalyst for the deepest love the couple has ever felt.
In coping with the hard reality of breast cancer, each couple has to make its own, intensely personal and private adjustments when it comes to their sex life, the woman’s feelings of attractiveness after a mastectomy, etc. Apart from that, support and help for the woman coping with breast cancer and mastectomy is not so different from the support and help that should be offered anyone dealing with a significant trauma. Beyond providing any needed physical assistance and comfort, the loving spouse or partner needs patience with what might be a long recovery period, empathy (“What might I want and need if I were the one having a body part removed?”), and the ability to listen to outpourings of emotion at perhaps unexpected times.
Last but scarcely least, the patient’s spouse or partner needs a good sense of humor. Laughter can indeed be the best medicine. I can assure you that even in a situation as serious as dealing with breast cancer, humorous moments can be found, shared, and enjoyed.
Q: In your book you make it clear that you consider many things more important than your breasts. Could you tell us which three of these things you would consider the most important?
In Chapter 11 of my book, I have a list of many things that I miss more than I miss my breast. This question approaches the matter of my priorities from another angle, and I’m happy to answer it.
As I emphasize over and over, simply staying alive was and still is my number one goal. My husband and I both work hard to achieve and maintain good health, both physical and emotional. David and I have been married for almost four decades, and we hope to have many more years together.
Of course love is extremely important to both of us, for who can live happily without it? When I speak of all the love in my life, I have to stress that it has many branches. It encompasses the love I share with David, with our only son (Daniel, now 37), with the large family into which I was born, and with my many friends of all ages. As I continue to age, love becomes ever more important to me. I am profoundly grateful for whatever love and affection others give to me, and grow increasingly aware of the importance of giving as much love and affection as I can to others, before we are parted forever.
My work has always been important to me. I’m fortunate to be working at a variety of things that bring me great satisfaction, as well as constant contact with others: tutoring foreign languages (Spanish, German, and formerly French), translating, and teaching weight training classes. Many of my relatives are or were teachers, and I feel that teaching is literally in my blood. It feels like what I was born to do. When my work is going well, and especially when I know that I’m really helping others, I feel immense, very deep joy.
So, as you can see, whether or not I have breasts is quite irrelevant when it comes to the above concerns!
Q: Given your good general physical health and your maturity, you didn’t and still don’t lament your mastectomy all that much. But can a younger woman, say in her 20s or 30s, someone for whom her breasts are a large part of her feminine self-image, be expected to show your sort of strength?
No, and there are many reasons for that.
First of all, a woman in her 20s or 30s who develops breast cancer has to worry a great deal more than I did whether she will survive the experience at all. That’s because breast cancer in younger women tends to be much more aggressive and dangerous than it is in middle aged or elderly women. For a young woman diagnosed with breast cancer, it is of the utmost importance that she get the best medical treatment that she possibly can, and as fast as she can.
Secondly, a younger woman is almost surely more concerned with her physical appearance and attractiveness than an older woman is, especially if she has no spouse or other life partner at the time of her diagnosis. An older woman, after all, has already begun to deal with and accept the loss of her youthful physical beauty. She knows that there are many types of beauty, and that youthful physical attractiveness is only one type. In my experience, older women, especially happily married ones, tend to have much the same attitude that I do. They see the loss of their breasts as regrettable and painful, as well as frightening, but they know that those negatives will fade with time, provided they can regain their health.
As I detail in Chapter 12 of my book (“Breasts, Beauty, Sex, and Femininity”), I feel supremely lucky to have had my breasts mean so relatively little to me over the course of my life. But of course I am very well aware that most women’s breasts mean more to them and their sex partners than my breasts ever meant to me and my husband. I cannot pretend to know exactly what women whose breasts mean a great deal to them feel when faced with a mastectomy. It’s an operation which will probably preserve their lives, but which may deal them a terrible emotional blow.
As they seek to adjust and recover, many such women elect breast reconstruction, via the insertion of implants and the construction of new nipples. While modern surgical techniques have made such surgery far better and safer than in previous decades, women need to be made aware of possible problems, including the possible rejection of the implants by the body.
For those women who don’t want reconstruction, or whose bodies cannot tolerate it, there is the safe, comfortable option of wearing a mastectomy bra and a prosthesis, or breast form, which is inserted into a fabric pocket on the inside of the bra cup. That’s the option I myself selected, and I continue to be very happy with it. Good-quality modern breast forms are true wonders of technology: very comfortable to wear, and amazingly like real breasts in density, weight, and appearance.
I have a little story which I hope can be of some comfort to the single woman facing a mastectomy. – I have a friend who is younger than I am, unmarried, and much more feminine and womanly in appearance than I ever was. When she was faced with the necessity of a bilateral mastectomy, she could not conceive of living her life thereafter with only a mastectomy bra and prostheses to restore her lost curves. Thus she willingly submitted to the long, painful process of breast reconstruction, which turned out well in her case. This particular woman was dating no one before her mastectomy, but was hoping for a future attachment. Now, one year after her surgery, she has a new boyfriend, a compassionate man several years her junior, and I have never seen her happier.
To sum up: Each woman’s emotions and her reactions to breast cancer and mastectomy are her own. I would never presume to try to speak for all women. All that I could have done, all that I have done, is write a book detailing my own emotions and reactions, as well as those of my husband. I did so in the hope that I could give others a measure of hope and optimism in the face of an unfortunately common tragedy.
Q: Your literary novel Apart from You (Wildside Press, 2000) preceded your cancer book. Did it ever occur to you to use fiction as medium for expressing your experience of breast cancer?
No, it didn’t. Exactly why that was, I can’t say. All I know is that the ideas for my breast cancer book came to me in a very straightforward, factual way, and that writing a nonfiction account of my experiences seemed most efficient and appropriate. This book, by the way, took me only about four months to write, while my novel took me some 23 years to write.
Q: What advice would you offer to those who are experiencing cancer and to their families?
A patient’s reactions to cancer of any sort, as well as those of the patient’s family and close friends, are deeply personal and individual. The reactions surely depend a great deal upon the patient’s age and stage of life, whether or not he or she has a spouse and children, how likely the patient is to survive or die, what that person’s quality of life will be after any needed surgery or other treatment, and much more.
But here, for what they’re worth, are my best pieces of advice.
Once you or someone you love is diagnosed with cancer, it’s too late to be concerned with preventive measures or self-recrimination of any sort. Now is the time to arm yourself with as much knowledge as possible about the type of cancer involved and how it can best be treated. Obvious and valuable sources of information include physicians and other health professionals, up-to-date books and medical journals, the copious information on the Web (just make sure the latter comes from reliable sources, such as medical schools and hospitals), and family members or friends who have gone through similar experiences.
Be aware that negative emotions, such as fear, resentment, anger, and sadness, are perfectly natural in the face of cancer and other life-threatening diseases. You are not “weak” for feeling those emotions. Just don’t let them conquer you or your will to take whatever actions are necessary to save your life or the life of your loved one, assuming that’s possible. While treatment and recovery are not always possible, they are becoming increasingly common. Cancer is no longer an automatic death sentence. So take heart and try to maintain hope!
Support groups, with which the new patient can meet either in person or online, can be of tremendous help. Y-ME is a wonderful breast cancer support group with which I am now becoming involved. Here in Denver, Colorado, I will participate in Y-ME’s three-mile “Walk to Empower” on May 14th of this year. Among other valuable services, Y-ME offers 24-hour telephone counseling, provided in over 100 languages by well-trained women who are themselves breast cancer survivors.
You can find Y-ME at www.y-me.org.
Ernest: Leonore, thank you for being with us!
Leonore: You’re very welcome. Thank you for inviting me to answer these excellent questions.