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Conversations with Breast Cancer Patients
By Ernest Greenberg
iUniverseCopyright © 2002 Ernest Greenberg
All rights reserved.
In this day and age, with the high degree of emphasis placed on physical beauty, health, and sexuality, particularly in the Western world, the finding of a breast lump is one of the most dreaded events a woman can experience at any age but particularly in the prime of her life, and worse even at a young age.
The thoughts first engendered by this finding are reflections of the traditional fear of cancer compounded by the stories heard, the news and books read, the movies or video programs seen, frequently depicting the worst possible scenarios associated with the diagnosis of breast cancer. These media never dwell upon the many who, having been diagnosed and treated for breast cancer, are cured and go on with the rest of their life. We are given scenarios of the fear and suffering, not the successes.
While not minimizing the potential seriousness, with emphasis on "potential," of the finding of a breast lump, I must immediately qualify such a finding by reminding the reader of the fact that the breast is frequently, to a greater or lesser extent, a "lumpy" organ and that fortunately many of its lumps are benign and physiological. That does not mean that such a lump may be safely overlooked but that immediate panic is not necessarily justified. It is also a fact that with the present and constantly improving diagnostic technology it has become possible to detect breast cancers of minuscule size and at a stage of development at which immediate and appropriate treatment is associated with a very high rate of permanent CURE. Indeed, over the past several years the mortality from breast cancer finally stabilized and then declined while it had been rising for a long time in the past. At present questions are even raised about the true significance of the very tiny cancerous or pre- cancerous lesions detected by the ever increasing improvement of the mammographic images obtained by the ever increasing technological precision of the diagnostic equipment: should every single one of these increasingly smaller lesions be followed by biopsy and / or excision?
Surgery for breast cancer has become progressively less extensive and even in circumstances under which the breast has to be removed by mastectomy, the surgical technique of breast reconstruction has evolved to the point where physical appearance can be restored to a degree that also restores the self-image of the woman who has had to undergo that type of cancer surgery. On the other hand, a growing proportion of the women with breast cancer do not have to lose the affected breast because the increasingly early detection of cancers generally smaller than in the past, makes it possible to preserve it, thus avoiding the disfigurement of mastectomy. Furthermore, while the addition of radiation therapy to breast-conserving surgery, as an integral part of the initial treatment, has resulted in long-term outcomes identical to those of the previous standard mastectomy, it is not without certain long delayed after-effects including the rare development of other malignancies related to the radiation.
Finally, chemotherapy and/or hormonal therapy administered as part of the initial management (adjuvant systemic therapy) of breast cancer, when indicated, have improved both the survival and the cure rate for this malignancy. For the women for whom it is indicated the contemplation of having to undergo months of administration of these medications after the initial more or less extensive surgery and radiation therapy for some, is certainly disruptive and many of the media depictions and publicized personal stories have emphasized the frightening and uncomfortable aspects of this category of treatments. It is therefore not unexpected that its application is contemplated with dread. Yet, just as progress in the techniques of surgery, radiation, plastic reconstruction and chemotherapy has improved the quality of their results, new developments have improved the supportive measures designed not only to relieve but also to prevent the uncomfortable side effects of this chemotherapy, to the point that they seldom cause any serious disruption of the life and wellbeing of its recipients. Again, as with radiation therapy, certain long delayed complications are increasingly being recognized.
I have also found that the most devastating side effect of chemotherapy is not the nausea, the fatigue, the metabolic or hormonal changes, but it is the difficult-to-hide loss of hair. While that is the least medically important one and while it is temporary, it is, for a woman, other than the loss of a breast, the side effect that is associated with the greatest emotional impact, one that cannot be minimized and that has to be acknowledged and dealt with: the further disruption of the self-image.
In this section the story titled "This is New York" depicts one person's way of dealing with that feature of her disrupted physical appearance. Her story is unique and personal and only serves to illustrate the fact that each individual finds his or her way of dealing with that problem. It is frequently the attitude of those surrounding and interacting with the main character of this personal drama, that requires correction, guidance, and help, help that often comes from the patient herself.
The effects of the entire complex system including the diagnosis, the treatment, the profound and invisible physiological changes it produces as well as the emotional impact of it all on the woman herself, on those closest to her and on her sexuality, are frequently unmentioned and overlooked in her day-to-day care because they either are not physically obvious to the observing physician, because the patient feels uncomfortable complaining about these problems or because the physician is not prepared to deal with them. This complex after-shock associated with the treatment and course of this illness impacts on the lives on many of the involved couples because it has to do in good part with sexuality and because the problems of one member of these couples also impact the other. They should be addressed as an integral part of the patient's medical management. The recipient of the treatment should be made to feel that these problems can be addressed comfortably and candidly in the physician's office. While some may have to be referred for care by another specialist the existence of this profound impact on their life should at least be recognized and must be addressed.
Guilt, unexplained, undeserved and frequently self-imposed, is a burden many women carry once diagnosed. Such guilt can be relieved by reassurance and explanations lest it becomes an additional source of unnecessary emotional anguish.
Some of these feelings and questions brought up by women recently diagnosed with breast cancer are illustrated in the conversations related in this section. No one can convey them better than those immediately involved, the woman herself, her closest ones, spouse, family, friend or lover, and her physician.
The journey through breast cancer often starts with the "lump."
Alice was forty-eight and, because of her family history of breast cancer, she had come for her yearly breast examination and mammograms since the age of forty. She had called for an appointment one month ahead of her scheduled yearly visit because she had found a lump in her left breast that morning.
Now she sat in my small consultation room in the only available armchair not yet overtaken by the mounting stacks of mail and medical journals. The two glass cabinets hanging on the wall behind her were the only truly neat havens in that space. They contain various small gifts presented to me over the years by people I have cared for. My favorite is the ivory Chinese "medicine doll" in the cabinet on my left as I look at that wall. The story I was told is that in the high social circles of ancient China women did not leave their homes, not even to visit their physician. They would send instead one of their ladies-in- waiting carrying a carved ivory representation of a reclining woman. The messenger would indicate to the physician the part of the body that was the source of her mistress' distress. Based on that information, the physician would then prescribe the remedy, potion or poultice he deemed appropriate to treat the illness. I frequently wondered as I would sometimes stop in the course of the day and gaze at that elegant reclining white shape of a woman with her eternal and mysterious smile, how the female patients with breast lumps fared under that system of health care delivery. The practice of medicine has certainly become more complex since then.
"So, Doctor ... what do you think of this lump?" asked Alice.
Her tone was both casual and concerned. It was the tone of someone truly worried but not wanting to make much of something that, while it might not deserve that much concern in the long run, was nevertheless a source of considerable anxiety reflected in her eyes and her entire body attitude at that particular time.
I had tried to be reassuring without being casual although a woman who comes to consult me about a lump in her breast is always a cause for concern. I tried to keep my face from showing any worry but this is a difficult task. A blank face is not a reassuring one because I do not ordinarily keep a blank face. A smile was not appropriate. I decided simply to express what I felt.
"It is there all right," I told her. "I can feel it easily but I cannot tell for sure whether it is truly a tumor or a bunch of cysts since your breast contains many smaller lumps that feel almost the same as this one and have always been there. I did not make any mention of this one in the notes of your last examination and therefore I think it is new although not necessarily serious. By the way, when do you expect to have your next period?"
She relaxed a little.
"In about two weeks. My breasts are starting to feel a little swollen but this ... thing feels different to me."
I knew what she meant. It felt different to me too, not out-and-out sinister, as I put it sometimes, but prominent enough to be worrisome and reason enough to be sure to check further into its nature.
I told her that he best would be for her to have a set of mammograms and then decide what else to do. "You would be due for it next month anyway," I added.
"So you think it is cancerous," she persisted.
"That is not what I said. Cancer is of course the thing I have to think of first but the diagnosis has to be obtained in the appropriate way. Sometimes it is immediately obvious. In your case it is not. Let me take the time to check it fully as soon as possible before jumping to a conclusion."
"When should I have the mammogram done?" she asked.
Her heart rate during the examination had told me how scared she had truly been. I picked up the telephone.
"I already called to find out if they will take you now or later today. This way I will be able to tell you more without having you sitting on hot coals over the weekend."
Now while she was worried she had at least the feeling that no time was being lost. She knew that although I had tried to reassure her I was concerned enough myself to try to speed up the process of determining the nature of that lump.
"Tell me ... should I worry?"
"Can I tell you not to?" I replied. "That is why I am trying to resolve this today. What can I say? Don't worry too much now. Let us deal with facts and not build sinister fancies until these facts are available. Go to Dr. Gordon now, you know his office. They are expecting you."
"Yes, but I must call my husband to have him meet me there when I have the mammogram. I don't feel I can face this alone. Oh my God! I am so scared doctor!"
"I know and I think it is a good idea to call your husband. You may then both come back here with your mammograms after Dr. Gordon has seen them and talked to me. We will then discuss the findings and what to do about them if anything."
"I am terribly scared."
Her older sister and one of her maternal aunts had died of breast cancer and that is how she had come to my office several years earlier when she would accompany them for their treatment and follow up. That is also why she eventually decided to come at regular intervals for breast examinations in addition to her yearly mammograms and breast self-examination which she had been instructed to perform monthly. It was already known that breast cancer could be frequent in certain families but the genetic* abnormalities associated with such "familial" breast cancer had not yet been discovered at that time.
"I know. Go and come back."
I could not help being anxious myself about this. Over the years, a various times, I have taken care of several members of a family for treatment breast cancer. It was either a sister or a daughter or a mother of the one who had originally come to me. Each time this happens my inner reaction is the feeling that I am experiencing the relapse of a serious illness that I am unable to shake completely. It is as if I have to undergo treatment all over again. On one occasion several years ago, seeing my reaction to the call of another member of such a family my wife tried to dissuade me from taking on her case.
Two hours later Alice returned with her husband.
"Hello Mr. Filipides, Mrs. Filipides. Please sit down." I had cleared the other chair of all the paper stuff, which had covered it, letters, publications, notices of new regulations, advertisements, and professional journals ... "Show me the films. I spoke with Dr. Gordon already."
I placed the films on the X-ray viewing box and examined them. "As you already know he not only did the regular mammograms but he also took magnified views of the spot we are all concerned about as well as an ultrasound examination. He finds nothing suspicious on these studies. Yet you do have this somewhat thickened area in the breast on examination. Having looked at all the films myself I am satisfied of the fact that I also find nothing corresponding to the area of thickening that is causing all of us to worry."
"So, where do we go from here?"
"Some cancers, fortunately few, do not show up on the mammogram and more so in younger women because the breast tissue is dense and relatively opaque to x-ray. Since you have a family history of breast cancer, I feel that I should be particularly careful in your situation. I think it is a good idea for you to return here for a recheck of the breast shortly after your next period. If I can still feel the same thickened area at that time, I think a biopsy will be indicated to start with. What follows will depend upon the findings. If the biopsy is negative, I would still repeat the mammogram in four to five months just to make sure everything is OK."
"What if the biopsy shows it is cancer Doctor?"
I have had to deal with "what if" all my professional life. "What if(s)" cannot be brushed off.
"We shall cross this bridge if or when we meet it and hope we don't. Since we have not met it yet there is no point in creating an entire scenario about something that does not exists and live in fear prematurely and unnecessarily. I know this is not easy and I wish there were a better way to handle it but there is not."
Excerpted from Conversations with Breast Cancer Patients by Ernest Greenberg. Copyright © 2002 Ernest Greenberg. Excerpted by permission of iUniverse.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Table of Contents
ContentsPreface to the second edition, xiii,
Preface to the first edition, xvii,
SECTION I: At first, 1,
The lump, 5,
I did not know that men., 10,
What did I do wrong?, 13,
Where the answers?, 18,
Will I lose my hair?, 24,
All these medications, 35,
What about sex?, 41,
I paid my dues, 47,
He left me, 49,
A voice on the telephone, 52,
The photograph, 56,
To share or not to share, 58,
SECTION II: weathering the storm, 60,
What if it were your wife?., 64,
More hormonal treatment? For me?, 71,
Don't tell her, 76,
I tell everyone, 82,
The message, 88,
This is it, 92,
Here I can cry can't I?, 99,
Twenty years and still here, 101,
Please no heroics, 105,
Come to my wedding, 109,
No borgia methods, 112,
SECTION III: Living, 116,
Hormones for health and beauty, 122,
What have you done ..., 129,
I wish, 138,
The choice, 139,
This is new york, 143,
Looking forward., 147,
To live, to love, 149,
SECTION IV: Attitudes and reactions, 151,
Is it dangerous?, 160,
Fortune cookie, 163,
Jolly oncologist, 165,
The smile, 170,
My turn, my boost, 172,
Section V: Beyond the wall, 174,
I am too young, 182,
My will be done?, 184,
Is it worth it?, 187,
Let me die, 189,
Was it a dream?, 193,
EPILOGUE: The crystal ball and the time: machine, 195,