Table 1 Final category system used for the qualitative and quantitative analysis
Category | Description | Sample characteristic statements by the women |
|---|---|---|
Worst experience | ||
Psychological distress | Anxiety or uncertainty about the course or outcome of the illness. | “uncertainty according to the outcome of surgery”; “uncertainty about the future”; “anxiety”; “fear of recurrence”; “fear of dying” |
Chemotherapy | Chemotherapy or related side-effects. | “chemotherapy”; “loss of hair”; “to look at myself due to the loss of hair” “port implantation for chemotherapy” |
Cancer diagnosis | The shock of receiving cancer diagnosis and the fact of being a cancer patient. | “communication of the diagnosis by the gynaecologist”; “Cancer itself! I have always lived a healthy life”; “that you have cancer and can’t forget it” |
Mastectomy | Removal of the breast and the affected body image. | “removal of the breast, loss of self-esteem regarding sexuality”; “losing my breast or dying”; “disfigurement of the body, considerable restrictions in dressing” |
Social burden | Fear of family or other conflicts in partnership or family caused by the illness. | “to have to be strong for my family”; “the fear of my twin sister and my daughter”; “that my husband couldn’t get along with the changes of my body, what I never had expected”; “to see, how my husband was suffering”; |
Additional illnesses | Additional diseases like comorbidities or recurrence during or after breast cancer. | “I had a recurrence”; “cancer disease was accompanied by atrial fibrillations – bad health status for a long time”; “arm pain because my right upper arm was disabled by a fracture” |
Radiotherapy | Radiotherapy with related side-effects. | “loss of energy because of radiation”; “after radiotherapy I had a pneumonia for nearly five years after treatment with cortisone” |
Endocrine therapy | Endocrine therapy with related side-effects. | “endocrine therapy with all side effects”; “the obligation to take pills continuously despite circulatory complaints”; “my bones, probably affected by the intake of medication” |
Nothing | No worst experience. | |
Other | ”pain”; “fatigue”; “that life will never be the same!”; “Everything happened at once. Diagnosis, divorce, driving test, moving house” | |
Positive aspects | ||
Change in life priorities | Change of one’s own priorities in life in terms of living life more consciously and relaxed, or changes in lifestyle. | “I think, you live more intensively and consciously”; “I have reconsidered my life, changed several things”; “I see a lot of things more relaxed”; “I have learnt to take more care of myself, to say ‘no’ more often that makes me proud” |
Social support | Support by family, friends, or colleagues as well as unexpected help from others. | “the experience of intensive and also often unexpected support and friendship”; “my friends never abandoned me”; “I experienced a lot of attention, appreciation and support”; “I met wonderful people” |
Good course of cancer | The good course and outcome of the illness. | “tumour was very small”; “no metastases”; “disease was early detected because of annual check-up” |
Support by physicians/ nurses | The good (medical) treatment by physicians or nurses. | “the experience of caring physicians and nurses”; “advice and reassurance”; “the good medical attendance” |
Gratitude | Being grateful to have survived. | “I have developed a profound feeling of gratitude”; “that I’m still alive”; “looking back on my life and thankfulness”; “regarding every day as a gift from God” |
Other | “I could manage my disease very well” | |
Advice | ||
Fighting spirit | Think positive, fight, and never lose hope. | “never give up and think positive all the time”; “always thinking ‘Yes, I can manage that!’”; “Never lose hope!” |
Information | Keep calm, get a second opinion, and inform yourself about the illness. | “inform yourself about all treatment options”; “don’t believe just one single physician”; “inform yourself intensively in the internet, get a second opinion” |
Confidence in physicians | Trust your physician and follow his/ her instructions. | “do everything the doctor says”; “confidence in physicians”; “adherence to treatment” |
Openness | Confide in somebody and talk a lot about the illness. | “positive conversations, share your experiences”; “talking a lot about the illness”; ““don’t hide the disease” |
No advice | It is not possible to give any advice for fellow patients. | “I can’t give any advice”; “none, every patient comes to terms with it another way” |
Business as usual | Don’t think too much about the illness, live life in a normal way. | “fade out disease of daily life, live for the moment”; “master everyday life as usual, domestic work, sports, friends, theatre”; “don’t think too much about disease, distract yourself, and remain cheerful” |
Cancer screening | Have regular cancer screening. | “go to the doctor in time”; “regular cancer screening”; “early detection by screening” |
Acceptance | Accept the illness. | “things you can’t change you have to accept”; “accepting disease” |
Self-reflection | Reconsider your life. | “consider disease as a touchstone and if applicable as turning point, which is not solely negative but also offers opportunities to find oneself”; “attend to your own soul, find out, what makes you happy” |
Belief in God | Strengthening in faith. | “pray a lot”; “don’t lose courage, my trust in God helped me a lot” |
Support group | Visit a support group. | “contact other patients or a support group”; “visit a support group as soon as possible” |
Secrecy | Keep your illness as a secret. | “Inform as few people as possible! Hardly anybody can help!” |
Other | “Go to rehab”; “to undergo surgery immediately”; “no complementary medicine, take part in a trial”; “accept help” | |