Eight women from the original study had died during the 2 years since completing their acupuncture treatment. Twenty-one women did not return written statements. A total of 61 statements were received; 33 of these women had previously been treated with TCM acupuncture, and the other 28 had received sham acupuncture. The mean age of the participants was 51.3 (52.5 in the TCM group and 50.2 in the control group). The women provided their answers by mail. These were anonymously assessed by the first author and an oncology nurse, both experienced in research methods. The women also completed a validated Kupperman menopausal index, examining the severity of any symptoms often associated with menopause, and a questionnaire aimed at gathering information about symptom development. Patients answered five questions about: treatments in connection with their diagnosis, hot flash severity, whether they had had more acupuncture or other treatments (including medication) for their hot flash problems, and whether they still used the same estrogen-antagonist medication, had changed to another, or stopped. This data will be published at a later date in a quantitative article.
The women returned statements about their experiences relating to their breast cancer diagnosis, acupuncture treatment for hot flashes, related symptoms, and side effects of estrogen-antagonist treatment, and their daily life. There was great variation in style, and the length of their statements ranged from 0 to 364 words; the number of words in both groups was comparable. Statements were analyzed by systematic text condensation.
Although the question posed to the participants did not specifically mention hot flashes or acupuncture, 28 of the 61 participants commented on one or both. Fifteen patients, previously treated with traditional acupuncture for their hot flashes, commented on the positive effects they had experienced during and after treatment. Most went on to describe the quality and quantity of their hot flashes; 10 mentioned that they were still fewer and milder than they had been before they received treatment. Comments included: “The hot flashes have returned but only slightly at night, but they are over quickly and I have got used to them”. “My family saw a change in me when the hot flashes started to lessen during acupuncture treatment, I went back to work again, my colleagues are important to me. During the last 2 years I have had some top up treatments, and will in the future if I start to get warm again”. “Acupuncture helped a lot, my hot flashes were reduced to a level that I felt that I could manage, and have stayed like that”. A majority of these women went on to describe how they approached, or managed their hot flashes; techniques included avoiding situations facilitating their hot flashes, such as stress, certain foods and alcohol. Five women mentioned simple relaxation techniques as a means of stopping, controlling, or shortening hot flashes. Thirteen patients from the control group commented on acupuncture and level of hot flashes, though less favorably than the TCM group. Nine women complained of severe hot flashes, only one said that acupuncture had reduced her hot flashes, four said that acupuncture had not worked, and one commented that it was painful. A typical comment was: “I have strong and frequent hot flashes, about once an hour, I wake up 4–5 times at night, even so, the hot flashes are worse during the day”. Another participant wrote: “I sweat a lot and have lots of hot flashes every day, but have learnt to tackle them, they don’t bother me as much, acupuncture did not work for me”. One lady related her hot flashes to stress at work, she wrote: “I work full time as a restaurant manager, I have lots of hot flashes, especially when I am stressed, I start to get warm, sweat and feel sick”. Four women mentioned that food and drink affects them: “I get instant hot flashes from fatty foods, caffeine and red wine”. Another woman wrote, “I found out that strong, spicy food, red wine, and chocolate provokes hot flashes”. One lady commented, “If I lead a regulated life and do not eat chocolate, I feel better, and my hot flashes are not as bothersome, but it is not easy, I have not got much will power”.
Only a total of five women mentioned their social and family lives, but only to demonstrate the strength of their symptoms; all but one were from the control group. One lady told how she disturbed her husband at night when she could not sleep; another described how shocked her friends were when she had a hot flash and sweat dripped down her face. One lady described how pleased she was to meet and bond with other young breast cancer patients; she felt that they understood each other’s problems when she attended a rehabilitation centre.
A total of 20 women, equally divided between the two groups, described how they discovered their breast tumor and their experiences with the health service. A young woman of 30 wrote: “When I was diagnosed, I decided that I would be in control of the disease, not the other way around. I have always been mentally strong and that has not changed”. Another wrote: “When I was diagnosed, I was not afraid, I felt safe at the hospital. The whole process has enriched my life. Although tamoxifen took all my strength and gave me enormous aches and pains, these disappeared when I changed to Arimidex [letrozole]. I can’t complain, I have a few aches here and there, just like other women of my age”. Another said: “I scratched my breast one day and felt a lump. Four weeks later I was operated, I tolerated the post-operative treatment well. I tell my friends that I am not sick, I just have a few problems”. Most women who mentioned the health service seemed pleased with the service and personnel. Only two complained, both about their general practitioners; they both said that their doctors did not understand their complaints of side effects due to anti-estrogen medication and did not have time to listen to them. Another wrote that she was comforted when the surgeon said pre-operatively that she would be totally healthy again, she also said that she had confidence in all the hospital personnel. One participant wrote: “Being diagnosed with breast cancer was a shock, but much worse were the side effects of tamoxifen, hot flashes 3–4 times an hour, day and night, I was tired out, my quality of life was zero. Thanks to my doctor at the breast centre I was referred to acupuncture treatment, my hot flashes gradually reduced and I got some sleep”.
A lot of women, more than 50% from both groups, wrote about side effects of their estrogen-antagonist medication. Apart from hot flashes and sweating, sleep problems and tiredness were a big problem, followed by arm edema, muscle and joint pain, body weight increase, headaches, and dry vaginal mucus membranes. One young lady wrote: “I have always been strong and in good shape, but not anymore. My body aches, in a way I cannot describe, my joints ache. My fingers are stiff, it takes time for them to warm up and they stiffen quickly when I use them”. Many women used the word exhausted, a total of 16 patients either complained of sleep problems or of being tired. “I am weary and tired all the time, even though I sleep for a few hours after work”. Another stated: “Hot flashes, edema in my arm, sleep problems and tiredness has reduced my quality of life and ability to work”. One tired lady wrote: “I am exhausted, I did not receive any information on how the side-effects of the chemotherapy and medicines would affect me, I have had a hard time explaining these problems to the social services and my work place. As far as I know, these side-effects have not been documented, they need to be. I am a single mother and have had to tackle periods of depression, lack of sleep, hot flashes and fatigue alone, it has been really hard”. Vaginal dryness, a side effect of estrogen reduction was mentioned by several women. One wrote: “It is very uncomfortable, my vagina is dry, I have had numerous urine infections, and I bleed when I have sex”. Another lady wrote, “my sex life is over!” A third lady commented: “I have lost my sex drive, my husband and I are not as close now as we used to be, I put this down to lack of intimacy”. A total of 20 women mentioned more than two side effects in their statements, indicating that these problems are of great importance to them.
On a positive note, many women had come to terms with their situation; many commented that despite their health problems, they were happy and content. A total of 18 patients (13 from the traditional acupuncture group and five from the control group) ended their statements on a happy note. Comments included: “I am OK. I am certain that I have received the best treatment in the world”, “Despite my breast cancer diagnosis, my life is positive, I am fine”, “I am healthy, the only thing I cannot do is go topless on the beach”. “I have learnt to live with my problems. I cannot complain, it could be much worse. I am good”. “Ok, so I have lost my sex drive, got gum disease and tendinitis, but I am alive and happy”.