Almost all of the women we interviewed spoke highly of the care they received, with some exceptions. They appreciated health professionals who were honest, kind, took their time, were available, compassionate and understanding, who explained things well to them, and who made them feel like a person and not a number. Malika described it by saying: "When I go to my oncologist, I laugh even if he brings me bad news because there is a great rapport (or complicity) with my doctor." Amanda received an e-mail address and a mobile number from her health professionals, something she had never experienced before. She felt people were sometimes bending over backwards to support her. Shelley describes how her relationship with her physician grew and how she became less uptight and more comfortable to speak about side-effects and feelings. Some women also described how they sympathized with the difficult work circumstances for professionals.
Several women highlighted how important it was to have developed positive relationships with their professionals. This led to feelings of trust, of being part of a team, and increased confidence in their treatment. Women described different preferences with regards to communication in these relationships. Joanne, for example, liked the blunt and honest approach of her surgeon. Most women described good connections with at least one or more health care professionals (such as their GP, oncologist, surgeon, or specific nurses) within their treatment team.
Not all experiences, however, were positive, and as Donna said "I would say 95% of the people I dealt with were great but the 5% that were challenging seemed to be the most important players in this and they weren’t so (great).” Women described their bad experiences in relating to healthcare professionals and how this left a mark on them including rudeness or derogatory remarks, not giving any hope, not telling the truth, an apparent resistance to offering help, or explaining things in an incomprehensible way and experiencing a lack of continuity of care. For example, Gaye was told that saggy reconstructed breasts are OK for someone her age’; May-Lie’s radiologist just walked out on her after he realized he made a wrong remark. Women reacted in different ways. Donna, for example, struggled with the abrupt manner in which her treatment was presented and was disheartened to have to get used to using her patient number (CR24445) just to communicate with professionals; Gaye switched surgeons; Nalie, a 24-year-old patient, was challenged in relating to an older oncologist; and Kathryn felt that health professionals related differently to her because of her metastasized cancer.
Laurie had a unique approach as a scientist herself – she prepared several PowerPoints to present her perspectives about her treatment options to her surgeon and other health care professionals. She said "For the doctors to take you seriously you have to learn enough that you can talk in an educated way and you're not just telling them random stuff that you found on the Internet."
Women knew that communication with their healthcare professionals was important but some found it could be intimidating. They gave examples of poor listening skills and a lack of openness to understanding others’ personal preferences. Confusion about what doctors or other health professionals had told them was – especially in times of distress, was common, and some women spoke about difficulties in speaking about important subjects such as sexuality and fertility issues. For example, when Christine received news about changes in her illness, she was instantly busy thinking about all the next steps, making it more difficult to remember what was said by the doctor or nurse.
Gaye felt that it was important that people should not be made afraid by doctors. She asked her doctor to stop telling her repeatedly that she is at high risk, that telling her once was enough.
Being well prepared for appointments was important for women; they prepared themselves in different ways for example by bringing someone along and writing down questions beforehand. It was not always possible to be perfectly prepared however and sometimes women heard devastating news when they were least expecting it, which was worse when they were alone in those moments.
Going to appointments together with a family member or friend was helpful to remember what was said and make sure all the questions were asked. And this person could also be someone that fights for your cause.
Some women preferred going to the appointments with friends, rather than family members, as they were less personally involved. Amanda described going with several family members to appointments in the beginning but now she either goes alone or with one person. Debbra mentioned that it is always possible to ask the social worker to come with you if you have nobody to join you, or ask the GP to help with certain things that are important to you. Christine decided to never go with someone to appointments. She wanted to make her own healthcare decisions.
Nadia (A) and Aliza hardly ever asked questions but tried to find information after the appointments. Most other women wrote their questions down beforehand. Debbra emphasized that no question is stupid, and Shelley finds that questions help her to validate doubts or fears she has. Shelley said: "And again, if you don't ask, you don't know … you'll never know if, if there's something to help you out." Shelley and Debbra asked for more testing when they did not trust the results of the first tests, and in both cases their doctor agreed to refer for further testing. Tina and Laurie asked for their own reports and test results and if not received the first time they would ask the secretary.
Clinical appointments sometimes involved additional examinations by medical and other types of students.
Second opinion and changing healthcare professionals
In situations where women felt uncomfortable with their treatment or their relationship with their health professional, some requested a second opinion or switched healthcare professionals. Julie felt reassured when a second doctor told her that he would treat her in the same way as proposed by the first doctor.
Deciding to change doctors was not always an easy decision as women feared possible consequences, but they felt it was important to take action when you do not relate well to your professional or do not have trust. Laurie said "if you don't find that you're getting along with your doctor, change because it makes a big difference that you can talk to the doctor and that you feel that he's on your side." Debbra didn't trust her oncologist and felt that she received the wrong treatment, and was afraid that her care would be minimized if she decided to change oncologists but she reassured others that it is ok to change.
Advice to health professionals
Women offered messages and advice for health professionals caring for breast cancer patients. Their ideas about how health professionals might improve their services and care for patients like them are presented here.
Women generally trusted their health professionals, but most wanted to be included in the decision-making process and preferred an active role in their care.
Many women wanted their health professionals to know that the attitude of their provider does matter, and it can make a significant difference in the perceived quality of care.
Many women highlighted the importance of being treated as an individual. In addition, Julie noted that they want to be looked at as a whole person, not just as a particular tumour.
Having confidence in the quality of care received was very important. Amanda said she would have appreciated having a physician who was (or made themselves) knowledgeable about reproductive options for premenopausal women. When certain decisions have to be made quickly, it is helpful when the health professional can be a constant, reliable source of information.