Participant data revealed care-seeking experiences for 16 types of post-treatment symptoms: lymphedema (16 women), urinary disorder (9), menopausal symptoms (2), fatigue (2), numbness (2), taste disorder (1), pain (1), irritability (1), depression (1), bowel obstruction (1), abdominal pain (1), constipation (1), cystitis (1), palpitation (1), inguinal hernia (1), and disk hernia (2). The description of inguinal hernia and disk hernia refers to symptoms that worsened after treatment.
Analysis revealed 10 categories related to careseeking: “knowledge and interpretation,” “persistent or worsened symptoms,” “groping for answers,” “gynecological consultation at follow-up,” “non-treatment,” “symptom alleviation or disappearance,” “referral,” “obtaining information through people and media,” “visit to specialist clinic of choice,” and “treatment or advice.” The study identified 15 types of category–category relationships, as shown in Figure 1.
The category–category relationships revealed that patients receive treatments for adverse effects through 2 pathways: “gynecological consultation at follow-up” and “visit to specialist clinic of choice.” Three factors, namely, “knowledge and interpretation,” “non-treatment,” and “obtaining information through people and media,” were found to directly influence care reception at the 2 pathways leading to treatment. Descriptions of these 2 pathways and 3 factors are given below. The other 5 categories are also indicated in relation to these 2 pathways and the 3 factors.
Gynecological consultation at follow-up
Among the two observed pathways, gynecological consultation at follow-up visits presented as an important opportunity for symptomatic women to seek care. Ten women described their experience of consulting gynecologists about their post-treatment symptoms at follow-up visits. They told their gynecologists about feelings of discomfort, pain, or symptoms similar to those described to them prior to discharge after initial treatment.
“I felt grumpiness when preparing meals or doing something similarly insignificant so that I even felt like beating on a rice bowl or something…when he asked me how I was doing, I told him about it and that I felt burning and couldn’t sleep. He prescribed me a pill.” (#15, 1 year after treatment)
At follow-up consultations, women experienced 3 types of responses from gynecologists in reaction to their symptoms: (1) “treatment or advice,” (2) “referral,” or (3) “non-treatment.” Treatments received at follow-up included drug prescriptions for menopausal symptoms, urinary disorders, and swollen legs (“treatment or advice”). Physicians referred lymphedema patients to outpatient clinics specializing in particular symptoms. Urinary disorders, menopausal symptoms, and disk/inguinal hernia patients received recommendations to visit other departments or local clinics (“referral”). “It was about half a year after the treatment when I told my doctor that I felt something was wrong. He said “I expected that” and recommended that I buy a special stocking…but the symptom didn’t get better. In the next visit, the doctor recommended that I visit a lymphedema clinic.” (#11, 6 year after treatment)
One woman told that she had consulted her doctor but was unsure about the timing of treatment. “When I told my doctor at follow-up about inguinal hernia, he said that he could refer me to a specialist. However, sometimes the discomfort continues and sometimes it disappears. So I waited while wondering whether someday I will have to receive surgery.” (#10, 5 years after treatment)
Visit to specialist clinic of choice
In addition to follow-ups, women sought care at nearby clinics and from departments other than gynecology at the hospitals where they received cancer treatment. A total of 10 experiences were described by 6 women. They visited 5 types of clinical doctors; internists, psychiatrists, urologists, lymphedema specialists, and acupuncture therapists. Women cited 3 reasons for visiting doctors outside of follow-up: (1) they did not think that their symptoms were related to cancer treatment, (2) they did not receive treatment at follow-ups, and (3) they thought that there was no point in consulting the gynecologist at follow-up.
One woman said she visited a nearby urologist when she experienced urine leakage after treatment. There, she received information for the first time that her symptom was a result of cancer treatment. “I felt something was wrong and visited a urologist… I understood what was happening when he told me it was because of the surgery…he was the first person to tell me that gynecological surgery could disrupt the bladder.” (#26, 4 years after treatment) She added that she was not informed that the surgery for cancer treatment could cause urinary disorder.
Another woman who received no treatment or instruction when consulting a gynecologist about swollen legs at a follow-up said she visited a lymphedema clinic that she herself had found. “There was no treatment or instruction on how to ease symptoms at that time. So I looked for a lymphedema clinic, visited there on my own judgment, and learned about self-care…I could manage to solve my problems by making my own decision of consulting a specialist.” (#27, 6 years after treatment)
Those who believed that there was no point in consulting the gynecologist at follow-up said that they felt this way because their doctors had changed or because of the hospital’s attitude when they were in-patients. “If you were to see the same doctor who treated you, you might be able to complain or tell him that you ended up having such-and-such symptoms. But, all of the doctors who were in charge of my treatment have left, and I am afraid that there is no point complaining to my current doctor. So I think I have no choice but to see a urologist about urinary problems.” (#14, 7 years after treatment)
Description about 3 factors influencing care reception, “knowledge and interpretation,” “non-treatment,” and “obtaining information through people and media” is given below:
Knowledge and interpretation
Among factors influencing the treatment process, scarcity of information and incorrect interpretation of the symptoms were the leading factors influencing the lack of need for the women to seek professional care for their adverse effects. Knowledge about adverse effects and interpretations of signs and symptoms affected whether women sought care and how they participated in care. Eleven women said they received information about possible adverse effects by hospital staff before surgery or at discharge. They obtained knowledge through surgical consent forms, pre-operative consultations, and discharge documents. Possible adverse effects mentioned on those occasions included lymphedema, urinary dysfunction, neurotoxicity, and menopausal symptoms. Those who developed urinary dysfunction before discharge also gained knowledge through their treatment experience at that time. The majority of informed women consulted gynecologists at follow-ups when experiencing signs or symptoms. “I was told by the doctor that I would develop lymphedema and visited the clinic referred by the doctor.” (#09, 1 year after treatment)
In contrast, 5 women claimed that they had not received information on adverse effects from hospital staff before discharge. Some of these women visited nearby clinics when symptoms developed, while the others did not even think about seeking care, ignoring their symptoms until they worsened and only later realizing that their symptoms, including depression, lymphedema, and urinary dysfunction, were effects of gynecological cancer and treatment. One woman said she knew nothing about lymphedema even after she first developed the symptom soon after surgery. Unable to realize that her symptom was treatment related, she spent her daily life with prolonged symptoms. Her symptoms were persistent and suddenly worsened (“persistent or worsened symptoms”). “I felt tingling pain in my right leg soon after the surgery. I thought it was an effect of anesthesia and would be better soon, but the pain continued. After discharge, I made myself walk around the neighborhood to build up my strength. Soon I found my leg got very swollen. I was so surprised.” (#29, 3 years after treatment) It was at this point that she visited her gynecologist.
Interpretation of symptoms affected whether women sought care or not. Three women who did not seek care accepted the symptoms as signs of old age or a legacy of treatment. Others thought they could manage the symptom or that the symptoms would disappear soon. Some women whose chronic symptoms worsened after treatment did not seek care because the symptom had existed before cancer treatment.
One woman who experienced fatigue but did not seek care voiced her concern about the interpretation of her symptoms. “I wonder where this fatigue comes from. Is it just because I am physically weak or due to the surgery that removed cancer? Does this have anything to do with the removal of lymph nodes? I felt so exhausted after working 4 hours a day and cannot continue working anymore.” (#30, 2 years after treatment)
Many women who realized the connection between symptoms and cancer treatment wished that they had received information earlier. One woman who visited a psychiatrist after a year of worry about depressing feelings said, “After wondering for some time why I felt pains in my chest and back, I thought it might be stress and visited a psychiatrist. He said it could be some kind of psychiatric effect since there were no such symptoms before…the symptom gradually disappeared…If I knew such symptoms would occur after treatment beforehand, I would’ve understood the symptom.” (#26, 4 years after treatment) Here, she also illustrated her days of wondering what to do with prolonged symptoms (“groping for answers” and “persistent or worsened symptoms”).
Non-treatment
Women with pain, lymphedema, and neurotoxicity said that their doctors did not provide care for adverse effects at follow-up when they first complained about the symptoms. Among 12 women who claimed of not receiving care at follow-ups, 5 received a diagnosis but did not receive treatment, while 7 received neither a diagnosis nor the treatment. Women’s recollections of their doctors’ explanations for non-treatment included statements such as “the symptom was not serious,” there was “no treatment for the symptom,” or “it would disappear over time.” Some doctors simply said that they had no knowledge of the symptom.
Among those women who were told by gynecologists that their symptom would disappear, one woman experienced remission of the symptom (“symptom alleviation or disappearance”). One woman who had a taste disorder after chemotherapy said, “The doctor told me it would disappear over time. I said ‘I see.’ I know there are people whose symptoms did not disappear after several months, but in my case, my taste recovered in a month and a half or so. So, I thought it did recover once the treatment completed.” (#12, 1 year after treatment)
However, there were women whose symptoms continued or worsened (“persistent or worsened symptoms”). For example, one woman who suffered numbness in her toes after chemotherapy said she was distressed by the duration of the symptom. She repeatedly complained about the symptom at follow-ups, but her doctor kept telling her to wait. The doctor’s attitude perturbed her. “He said it would disappear soon. However, as time elapsed, he initially said it would take 3 years and then later said 4 years. I wondered whether he didn’t care enough to treat me or didn’t know how to.” (#02, 1 year after treatment)
Obtaining information through people and media
Symptomatic women who did not interpret the symptom as a result of cancer treatment or who did not receive the treatment while consulting their gynecologists at follow-ups described how they groped for answers to find ways to ease their symptoms (“groping for answers”). For those women, information played a key role in obtaining treatment. Those who obtained useful information were able to take a step forward to either “gynecological consultation at follow-up” or “visit to a specialist clinic of choice” while those who did not kept wondering what to do.
Sources of information that were discussed included newspapers, television, the Internet, patient groups, and nurses. The adverse effect most often mentioned with regard to information seeking was lymphedema. One woman recalled finding an article about lymphedema in a newspaper. “I happened to find an article in a medical newspaper that described a doctor who left the university and opened a clinic. With that information, I visited there.” (#28, 7 years after treatment)
The Internet was mentioned as a source of information by patients and their family members. One woman, whose doctor stated that he was not aware of the symptom after the patient complained about her swollen leg at follow-up, said that her daughter discovered online a medical institution for treatment. “My daughter searched the Internet and found a local medical university’s vascular surgery department that appeared to do something…The doctor there said the symptom would last a lifetime and told me to use a special German-made stocking. It was from that doctor that I first understood that I was suffering from lymphedema.” (#13, 9 years after treatment)
Newspaper articles or Internet searches were the source of information on patient groups. One woman mentioned that she immediately contacted a patient group that held regular meetings at a local community center when she first experienced signs of lymphedema. “I met a patient with a swollen leg during my hospital stay. She did not receive any treatment. I thought the hospital would not provide treatment if I developed a symptom, so I searched for a patient group by myself and made a contact.” (#07, 6 years after treatment)
Nurses were unofficial sources of information. Some women spoke to the nurses with whom they had become acquainted during their hospital stay, while others talked with nurse or ex-nurse friends. “My doctor first told me it wasn’t serious and just prescribed Kampo [Chinese herbal medicine]. The symptom was not bad when I saw him because it was always in the morning, but it got worse at night. …it was around that time my ex-nurse friend warned me. She told me I should take care, otherwise it could become serious.” (#12, 1 year after treatment)
After obtaining information on symptoms, women either visited clinics or talked to their gynecologists about the information at the follow-up. For example, one woman realized her leg had swollen when she attended a lecture on lymphedema hosted by a patient group. She consulted a gynecologist at the next follow-up visit, but he provided no treatment. After consultation, she met a nurse she had known since treatment and explained the situation. “I showed my leg to the doctor, but he said ‘Well, anyone’s leg can get swollen this much.’…As I was wondering what to do, I saw a head nurse with whom I talked a lot during my hospital stay…She said ‘It’s better to visit a specialist,’ so I did. My lymphedema turned out to be in an early stage…I think my leg would’ve been much worse if I hadn’t attended the lecture hosted by the patient group.” (#06, 6 years after treatment)