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.
I am lucky to have a medical team that listens. My surgeon was the first to give me my diagnosis and I always had a nice relationship with him. He is available to answer my questions and this from the start. So first, I consider myself very lucky for this. And secondly, I feel confident. And to trust your healthcare team is one of the first things I can suggest to someone.
Okay for healthcare professionals. I believe, I see the nurses in the hospital and I write them letters, bring flowers, donuts and all that stuff to them all the time. And I find the majority of them are the most amazing people I’ve ever met. They… my nurse particularly never wants to be singled out for a gift for herself, she only, she’s happier if I bring for everybody because she doesn’t want. Because they work as a unit, a lot of times they work as a unit in the hospital, and again this is the institution that I know. I see that one will help the other and they’re all such kind giving people. I think it’s a tough job because they see people dying all the time. And I know that they see me differently. When I tell them I’ve been around for 12 years their eyes perk up and it gives everybody hope. It’s an amazing thing but it’s a very, very difficult job to work in oncology because so many people die. It doesn’t matter, as I say, it doesn’t matter if you’re a happy person or a sad person or if you’re a bitch. It doesn’t matter, sometimes you just die and the drugs don’t work, or it spreads or whatever. I think for them, I think I would say the majority of them are already looking at the person and not the disease. Because, from what I see, they do treat people differently. You can’t treat everybody the same with a different disease, so I don’t know, it’s a hard one to say but I know that they work with the doctors and they’re very caring people.
And I don’t know, I probably… for them what would help them more is to work less time. Have more people… because now they’re cutting back in hospitals, something terrible. They just don’t have enough help. They don’t have enough in the hospital that they build. They build these huge hospitals, they become too small before they’re even old because of the amount of people that are diagnosed every year, it’s terrible.
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 surgeon; 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.
The other thing is… what I did is, I put a great big picture of my son on and I had a binder, like a notebook and I put it in the front. And when I got questioned about why I was doing something, or I got the sense that they weren’t understanding, I’d open to the picture to my son and I said “He needs a mom and this is why we’re doing it.” And you humanize it. I’m not an old woman, I am not ready to die and I am not going to leave him without a mom. So now, let’s have this conversation again. It’s not what I said, but it came across that way and they need to understand there’s human. It’s not just these lab results and this person who’s sitting there, they’re thinking “They’re hypochondriac.” And I know, she said to me, she got a call from the radiologist that said “Why am I doing the biopsy again?” Because they biopsied the same node but she was still okay with sending me for the biopsy because that’s what she knew that I needed and it was okay. And I know she tried to make me feel bad. I just sort of said "Well now we know for sure it was reactive don’t we and that makes me feel a lot better. I know you didn’t believe in it but it takes the 95% and takes it down a little bit more.” So she was okay with that.
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 all was said by the doctor or nurse.
Certain words, when the doctor uses them, I don’t understand them. So that’s the only thing. I get confused with them a little bit. Certain big words I don’t know the meaning. So if they can break it down then I feel much better.
And always, I went into my appointment with a friend and before the appointment, I say “Okay I want this, this and this discussed with my oncologist could you please make sure that these things come up if I forget.” Because when you’re in there and you’re discussing it, there’s a lot of stuff that might be being thrown at you and so it’s nice to have, again type A personality, a plan. Write your questions down. If you find that you’re oncologist is trying to rush you through it, make him stop. Make him stop, that is your time with him and no question is silly, no request is silly they need to hear what you have to say. You need to build that rapport with them and stuff like that. You obviously do everything respectfully. I don’t believe in being rude or obnoxious or yelling or anything like that but there’s a difference between doing it forcefully and getting what you need, and doing it disrespectfully. I don’t… you’re not going to get anywhere with the other one. But I’ve never had any issues with just saying I don’t… I told her, I said “I’m sorry, I don’t I know, you feel comfortable with that but I don’t.”
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.
I feel very strongly about that but I feel very strongly that women should have a voice in their treatment. They should know more in everything. They should know and not be afraid to ask the doctors questions. They’re not Gods, they might act like some of them superior but they’re not. No! So they do intimidate people especially when you’re sick. And you don’t want them to be bothered or you’re scared to ask. So I would advise breast cancer, or any cancer patients, to have a family member or good friend always with them so they can hear or tape record it. But always have somebody to say “She doesn’t feel well.” You’re too sick, you want to get somebody else to get in bad with the doctor rather than you get another needle. It’s what I’m saying, you don’t want to piss the doctor off, so you’re not going to ask questions that you think might be irrelevant or whatever. So if you’ve got somebody with you, like a daughter or a friend, to say “Well she has to know.” That’s not afraid to ask.
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 sometime involved additional examinations by medical and other types of students.
When I went in, the doctor examined and she had two students. They examined me too, she let them there was one Indian doctor, who was an intern I think, and another one, a white one. And they did… they asked me can, I touch and I said “Yes you are all learning the job so it’s okay.” So I was on the table and they touched and whatnot. But, they were a bit shy. They’re young.
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.
So I didn’t see my doctor; he was on vacation. I saw a resident and I was prescribed an ultrasound, which I had done in a radiology centre. I had an ultrasound and I had insisted to have a mammogram also, knowing that I was still breastfeeding at the time. I was still breastfeeding my two-year old daughter at the time. I had an ultrasound, a mammogram and the radiologist did the ultrasound on the left breast and he left. Then I called him back and told him: “Listen, you forgot the right breast.” He came back and did the ultrasound of the right breast. “Everything is ok, it is a cyst.” But I don’t know, something inside me was telling me: “Go, get a second opinion.” Because I left and was told: “There is nothing, those are only cysts.” I went back to my family doctor but he was on vacation. So I went back to the doctor who prescribed the ultrasound, the referral. He gave me the result and told me: “It is nothing, it is a cyst” and all that. Then I said: “Listen, I want a second opinion. I want to see a breast specialist.” So, I was sent to another centre.
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 oncologist but she reassured others that it is ok to change.
Except that for me, in the Fall I had seen a radio oncologist for the first time to plan the treatments after the surgery. But I can’t say that it went very well, but it was ok. But when I saw her again after the surgery, I was really discouraged after seeing her. She told me that it could go at least to the second degree, that it was certain. It was automatic… that I would have a hard time to eat, and she was, everything to discourage me. I was already scared of the radiotherapy! Frankly, I found that it was not reassuring me at all. During few days I seriously thought of not even having radiotherapy because with the type of cancer that I have I was telling myself “Is it worthwhile to suffer so much for the time I have left to live?” I then asked to change doctor. I called the hospital and asked to change doctor. I said that it was not working for me with that person, that if I was really to burn to the second degree I needed someone with empathy since that person didn’t have any. That’s it. I thought I would have to fight with them, feel some resistance because I was asking to change doctor, but no, they immediately did it. And after, with the second doctor, it went very well. He was super nice. So it was the second one that talked to me about the hotel. And he told me “No, if I see that the burning is too severe we will do, we will work at controlling it so that you burn as little as possible. Yes, you will burn, a little bit like a sunburn. It was much less… listening to him it was not as bad as what the other told me… What the second one told me is what happened.
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.
I think giving patients a choice goes a long way. Even if it’s not necessarily a yes or no choice but in certain circumstances that’s not always the case.
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.
There’s a level of comfort there that I would always find in that. But the compassion and the empathy was second to none throughout my journey and when I did encounter somebody who maybe was having a bad day for whatever reason it was tough. I found that really tough on the recovery road and nobody’s perfect.
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.
I think treating each woman as an individual, being able to take the time to spend with the woman, being caring, being patient, understanding. I always appreciate if I feel like the doctor or the healthcare person has time for me that isn’t rushed, that isn’t rushing off to do something else.
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.
I don’t know if it’s advice but just for the patient repeating histories of your family and your progression of your illness it’s an emotional thing and it’s hard. So if there’s any way you can read the chart and get some information before you go in there, and not have to ask the person to take it from the top every single time when they have 2 to 3 appointments a day. Do that.