Quality of life for the gynecologic oncology patient MICHAEL Chicago,
NEWTON,
M.D.
Illinois
An attempt is made to define the quality of life in terms of the patient with gynecokgic cancer. The effect of the diagnosis of cancer and its recurrence or its terminal state on the quality of life is considered. Possible met&is of assessing the patient’s individual feelings about the quality of her life are reviewed and suggestions made for incorporating these into plans of management at all stages of the disease. (AM. J. OBSTET. GYNECXIL. 134:886, 1979.)
OF LIFE" is an intriguing and puzzling term. It is mentioned frequently in connection with gynecologic oncology patients, but if I asked for a definition of it I might get as many answers as there are people in the audience. This widespread use of the phrase without precise agreement on its meaning retninds me of what Dr. Dale Coman, Professor of Pathology at the University of Pennsylvania School of Medicine, told me many years ago. He said that if you want a subject for research you should take a generally accepted statement from a standard textbook and try to find out if it is true. Very often you will discover that it is only an opinion and is not supported by good data. The purpose of this paper, then, is to define what “quality of life” means, how it is affected by gynecologic cancer and its therapy, and how it may be included in the overall plans for patient care. The life whose quality we are considering is composed of certain basic components (Table I). Body functions include the essentials of eating, excreting, activity, sexuality, and the presence or absence of pain. The worst thing that can happen to some people is to have one or another of these functions go wrong. For example, even the relatively minor nausea and vomiting which occasionally accompany the use of melphalan after operation in advanced cancer of the ovary may be almost intolerable to one woman. On the other hand, the severe vomiting which is often associated with the use of cis-platinum in the same condition may be acceptable to another.
"QUALITY
From the Department of Obstettis Northwestern University Medical
and Gynecology, School.
Presmted as Guest Speaker at the Forty-first Annual Meeting qf the South Atlantic Association of Obstetricians and Gynecologists, Hot Springs, Virginia, January 28-31, 1979.
Reprint
requests: Dr. Michael Newton, Chicago, Illinois 606 1 I.
Suitr 482, 866
333
E. Superior,
The ability to work, to earn money, and to he active outside the home is extremely important. Absence from work is one of the worst things that can happen to some women. Another woman may regard it as an opportunity to do something she had always wanted. Staying at home may be a disaster for one but a boon for another. Family relationships, whether with a husband, son, daughter, or other relative, can be the most important thing in a woman’s life. Another woman may not be so concerned about closeness to her family members. Such family ties tnay not always be loving ones. Some years ago a middle-aged man brought his wife into the hospital. She had had an exploratory taparotomy at another hospital for Stage Ill carcinoma of the ovary and had then been treated by abdominal radiation therapy. On admission she appeared to have extensive and almost terminal recurrent disease. It was clear, however, even from her few words, that she and her husband had a relationship in which she was the dominant figure and he the submissive one. We gave heI ‘l‘hiotepa at the chemotherapy-we were using time-and much to our surprise she had a remarkable remission which persisted for 6 months. As soon as she began t.o recover, the argumentative dominantsubmissive relationship between her and her husband became obvious to everyone on the floor. And our perceptive social worker remarked that for this patient, perhaps, one part of the quality of‘ her life la!, in this antagonistic relationship. The discovery of cancer or, indeed, of any serious disease adds a new and usually unpleasant dimension to an individual’s concept of the good life. First, the symptoms of the disease itsetf, although often minor at the beginning, may affect various organs and tunctions. Kuebler-Ross’ has pointed out that knowledge of approaching death results in a series of emotional responses-denial, anger, bargaining, depression, and 0002.9978/79/160066+04$00.40/0
0
1979 The
L
V. Mash\
(:I,.
Volume Number
134 8
resignation. Similar reactions occur when a diagnosis of cancer is first made, with possible substitution of the word “acceptance” for “resignation” (Table II).’ These responses, it should be noted, do not necessarily occur consecutively or in the order listed. One may be predominant and more than one may occur at the same time. But whatever the reactions, they effect an underlying change in the individual’s understanding of the quality of her life. Primary treatment for cancer of the female genital tract alters function, activity, and family relationships in different but specific ways. The effect of surgical treatment depends on the type of cancer and the extent of the procedure. Relatively minor and temporary changes usually result from such procedures as a simple hysterectomy with or without removal of the ovaries or from local excision of a vulvar lesion. However, concern about unnecessary operations and about the possible ill-effects of removing the ovaries makes some women unduly apprehensive about oophorectomy even when it is done for cancer. Radical hysterectomy for Stage I cancer of the cervix is somewhat different. There are immediate changes in the urinary tract, consisting of bladder atony, and long-term changes in bladder sensation and micturition. Because of the shortness of the vagina there may be changes in the response to coitus, although the distensibility of that organ usually permits these to be surmounted. Radical vulvectomy as primary treatment for cancer of the vulva produces a major change in the sexual life of a woman particularly if sexual stimulation and activity has been largely confined to the pelvic area and the external genitalia. The notorious tendency of radical vulvectomy incisions to heal by secondary intention sometimes has the unexpected effect of making a woman dependent on her family for care when she had always cared for them in the past. The effects of primary radiation therapy for cancer of the cervix or corpus uteri are often of a temporary nature. However, after the usual dose of external radiation many women note persistent changes in their intestinal tract, which alter food intake and bowel function. Years later they may say that there are certain foods that they cannot eat or that give them diarrhea. These effects are exaggerated if radiation is given to the para-aortic nodes or to the whole abdomen. Also, the shortening and stenosis of the upper vagina, primarily due to the internal application of radioactive sources, may adversely affect sexual relationships for the rest of a woman’s life. Until recently, chemotherapy has not been part of the primary treatment of gynecologic cancer. Now, however, single-drug chemotherapy, usually with an
Life’s quality for gynecologic oncology patient
Table
I. Basic components
867
of life
1. Body functions 2. Work 3. Family
Table
and activity relationships
II. Reactions
to diagnosis
of cancer
1. Denial
2. Anger 3. Bargaining 4. Depression 5. Acceptance .4dapted
Table
from
Kuebler-Ross.’
III. Complications
of chemotherapy
1. Gastrointestinal:
Nausea and vomiting Mucositis 2. Hematologic:
Myelosuppression 3, Dermatologic: Alopecia, rash 4. Cardiac 5. Urinary fract
alkylating agent such as melphalan, is often employed after operation in all stages of ovarian cancer. Of more importance is multiple-drug chemotherapy. For example, such regimens as hexamethylmelamine, cy clophosphamide, methotrexate, and 5-Auorouraci13 or doxorubicin and cyclophosphamide* have been used with considerable success and are being suggested as standard treatment after reductive surgery for carcinoma of the ovary, Stages III and IV. Chemotherapy affects the whole body and its side effects may involve many organ systems (Table III). It is easy to underestimate the cumulative impact of single-drug and especially multiple-drug chemotherapy on the whole patient. Recurrent cancer places a much heavier burden on the patient’s life. She may have disabling symptoms, and the knowledge that she still has disease despite her primary treatment recreates the denial, anger, bargaining, depression, and acceptance response. Also the treatment is likely to affect her more adversely. Secondary surgical treatment has typically been thought of as some type of exenteration. This results in a major change in the intestinal and urinary tracts and in the sexual apparatus. Recently, in persistent ovarian cancer, second-look procedures and operations for removal of bulky tumors or to relieve intestinal obstruction have been performed more frequently. All of these run the risk of affecting the patient’s life by the formation of abdominal stomas such as colostomy, ileostomy, and mucous fistulas.
Newton
868
Table IV.
NEWTON,
M.D.
Illinois
An attempt is made to define the quality of life in terms of the patient with gynecokgic cancer. The effect of the diagnosis of cancer and its recurrence or its terminal state on the quality of life is considered. Possible met&is of assessing the patient’s individual feelings about the quality of her life are reviewed and suggestions made for incorporating these into plans of management at all stages of the disease. (AM. J. OBSTET. GYNECXIL. 134:886, 1979.)
OF LIFE" is an intriguing and puzzling term. It is mentioned frequently in connection with gynecologic oncology patients, but if I asked for a definition of it I might get as many answers as there are people in the audience. This widespread use of the phrase without precise agreement on its meaning retninds me of what Dr. Dale Coman, Professor of Pathology at the University of Pennsylvania School of Medicine, told me many years ago. He said that if you want a subject for research you should take a generally accepted statement from a standard textbook and try to find out if it is true. Very often you will discover that it is only an opinion and is not supported by good data. The purpose of this paper, then, is to define what “quality of life” means, how it is affected by gynecologic cancer and its therapy, and how it may be included in the overall plans for patient care. The life whose quality we are considering is composed of certain basic components (Table I). Body functions include the essentials of eating, excreting, activity, sexuality, and the presence or absence of pain. The worst thing that can happen to some people is to have one or another of these functions go wrong. For example, even the relatively minor nausea and vomiting which occasionally accompany the use of melphalan after operation in advanced cancer of the ovary may be almost intolerable to one woman. On the other hand, the severe vomiting which is often associated with the use of cis-platinum in the same condition may be acceptable to another.
"QUALITY
From the Department of Obstettis Northwestern University Medical
and Gynecology, School.
Presmted as Guest Speaker at the Forty-first Annual Meeting qf the South Atlantic Association of Obstetricians and Gynecologists, Hot Springs, Virginia, January 28-31, 1979.
Reprint
requests: Dr. Michael Newton, Chicago, Illinois 606 1 I.
Suitr 482, 866
333
E. Superior,
The ability to work, to earn money, and to he active outside the home is extremely important. Absence from work is one of the worst things that can happen to some women. Another woman may regard it as an opportunity to do something she had always wanted. Staying at home may be a disaster for one but a boon for another. Family relationships, whether with a husband, son, daughter, or other relative, can be the most important thing in a woman’s life. Another woman may not be so concerned about closeness to her family members. Such family ties tnay not always be loving ones. Some years ago a middle-aged man brought his wife into the hospital. She had had an exploratory taparotomy at another hospital for Stage Ill carcinoma of the ovary and had then been treated by abdominal radiation therapy. On admission she appeared to have extensive and almost terminal recurrent disease. It was clear, however, even from her few words, that she and her husband had a relationship in which she was the dominant figure and he the submissive one. We gave heI ‘l‘hiotepa at the chemotherapy-we were using time-and much to our surprise she had a remarkable remission which persisted for 6 months. As soon as she began t.o recover, the argumentative dominantsubmissive relationship between her and her husband became obvious to everyone on the floor. And our perceptive social worker remarked that for this patient, perhaps, one part of the quality of‘ her life la!, in this antagonistic relationship. The discovery of cancer or, indeed, of any serious disease adds a new and usually unpleasant dimension to an individual’s concept of the good life. First, the symptoms of the disease itsetf, although often minor at the beginning, may affect various organs and tunctions. Kuebler-Ross’ has pointed out that knowledge of approaching death results in a series of emotional responses-denial, anger, bargaining, depression, and 0002.9978/79/160066+04$00.40/0
0
1979 The
L
V. Mash\
(:I,.
Volume Number
134 8
resignation. Similar reactions occur when a diagnosis of cancer is first made, with possible substitution of the word “acceptance” for “resignation” (Table II).’ These responses, it should be noted, do not necessarily occur consecutively or in the order listed. One may be predominant and more than one may occur at the same time. But whatever the reactions, they effect an underlying change in the individual’s understanding of the quality of her life. Primary treatment for cancer of the female genital tract alters function, activity, and family relationships in different but specific ways. The effect of surgical treatment depends on the type of cancer and the extent of the procedure. Relatively minor and temporary changes usually result from such procedures as a simple hysterectomy with or without removal of the ovaries or from local excision of a vulvar lesion. However, concern about unnecessary operations and about the possible ill-effects of removing the ovaries makes some women unduly apprehensive about oophorectomy even when it is done for cancer. Radical hysterectomy for Stage I cancer of the cervix is somewhat different. There are immediate changes in the urinary tract, consisting of bladder atony, and long-term changes in bladder sensation and micturition. Because of the shortness of the vagina there may be changes in the response to coitus, although the distensibility of that organ usually permits these to be surmounted. Radical vulvectomy as primary treatment for cancer of the vulva produces a major change in the sexual life of a woman particularly if sexual stimulation and activity has been largely confined to the pelvic area and the external genitalia. The notorious tendency of radical vulvectomy incisions to heal by secondary intention sometimes has the unexpected effect of making a woman dependent on her family for care when she had always cared for them in the past. The effects of primary radiation therapy for cancer of the cervix or corpus uteri are often of a temporary nature. However, after the usual dose of external radiation many women note persistent changes in their intestinal tract, which alter food intake and bowel function. Years later they may say that there are certain foods that they cannot eat or that give them diarrhea. These effects are exaggerated if radiation is given to the para-aortic nodes or to the whole abdomen. Also, the shortening and stenosis of the upper vagina, primarily due to the internal application of radioactive sources, may adversely affect sexual relationships for the rest of a woman’s life. Until recently, chemotherapy has not been part of the primary treatment of gynecologic cancer. Now, however, single-drug chemotherapy, usually with an
Life’s quality for gynecologic oncology patient
Table
I. Basic components
867
of life
1. Body functions 2. Work 3. Family
Table
and activity relationships
II. Reactions
to diagnosis
of cancer
1. Denial
2. Anger 3. Bargaining 4. Depression 5. Acceptance .4dapted
Table
from
Kuebler-Ross.’
III. Complications
of chemotherapy
1. Gastrointestinal:
Nausea and vomiting Mucositis 2. Hematologic:
Myelosuppression 3, Dermatologic: Alopecia, rash 4. Cardiac 5. Urinary fract
alkylating agent such as melphalan, is often employed after operation in all stages of ovarian cancer. Of more importance is multiple-drug chemotherapy. For example, such regimens as hexamethylmelamine, cy clophosphamide, methotrexate, and 5-Auorouraci13 or doxorubicin and cyclophosphamide* have been used with considerable success and are being suggested as standard treatment after reductive surgery for carcinoma of the ovary, Stages III and IV. Chemotherapy affects the whole body and its side effects may involve many organ systems (Table III). It is easy to underestimate the cumulative impact of single-drug and especially multiple-drug chemotherapy on the whole patient. Recurrent cancer places a much heavier burden on the patient’s life. She may have disabling symptoms, and the knowledge that she still has disease despite her primary treatment recreates the denial, anger, bargaining, depression, and acceptance response. Also the treatment is likely to affect her more adversely. Secondary surgical treatment has typically been thought of as some type of exenteration. This results in a major change in the intestinal and urinary tracts and in the sexual apparatus. Recently, in persistent ovarian cancer, second-look procedures and operations for removal of bulky tumors or to relieve intestinal obstruction have been performed more frequently. All of these run the risk of affecting the patient’s life by the formation of abdominal stomas such as colostomy, ileostomy, and mucous fistulas.
Newton
868
Table IV.
