Introduction

Introduction

Emma – Breast surgeon: Often, when people are first diagnosed with breast cancer, they don't really know where to turn and it's really confusing and there's a lot of layers to the treatment and even just making the decision for surgery - it's really complicated and especially with the first time that I meet with a patient, I would not expect them to absorb all of that information in one go. It's just unrealistic. I see this as a tool where the patients can take the information from a consultation and then go through it in their own time; digested in their own time, and then come back with another list of questions. Hopefully, it'll be an education resource for patients that they can make use of at a time that's convenient and comfortable for them and then that way, they can come closer to making the best decision for their particular situation because everybody's different.

Penny - Consumer: Initially when you’re first diagnosed, it is so overwhelming and it's a lot of information to take in.

I found that there was a lot of pamphlets that were given to me and at times, I just needed that human face-to-face contact to have someone explain to me, go through, take some time, so I could have time to actually process it all. At times, you don't want to have to read another pamphlet about something – you just want to have a chat to someone or hear someone’s experience, to be able to sort of just, you know, get as much information as you can and to start processing as you go along.

I think that hearing firsthand from the care [team], the surgeons, the nurses, the patients, what to expect, is very valuable than necessarily just going to an appointment or receiving a pamphlet or a phone number to call at times. I think making sure that you take your time and you ask as many questions as you like because this is to do with you, and you need to get as much information for yourself to then make those decisions moving forward.

Michelle – Breast care nurse: When you're considering a reconstruction, it's a very personal thing, and there's a lot of people in the community that might have advice; a lot of family members giving you advice; a lot of people who may have had surgery themselves.

I think it's important to go with your gut and to go with what feels right for you and to listen to your treating team and just take on board what they have to say because, at the end of the day, the treating team looking after you, do have your best interests at heart. They know what they can do within the parameters of their ability and your body shape and size.

If you need more than one appointment, that's fine. Some women have come back two or three times to discuss these things or even more. Much better to do that and feel comfortable with your decision, than just to rush into anything.

Jen – Breast care nurse: Could be quite complex. Breast cancer is very complex and I think I would take it that, one day at a time is a bit cliché but I think I would try and take it one section at a time, so gather your information, work out the pros and cons and then maybe take that to the next base, and be prepared, perhaps for some flexibility within that because sometimes you can map out in your head, ‘well I'm going down this path’ and then the doctor might say something here or we say something and you think heck, that doesn't suit me. Now I'm going to have to go down this path and you have to deal with new information and sometimes a disappointed feeling, so I think it's better to try and do one compartment at a time but stay flexible if you can.

Owen – Breast surgeon: I think we're all on the same page that it's a woman's right to have reconstruction. They should have a discussion and should have all the options open to them.

The difficulty is that surgeons will always have their slight biases; their own preferences and, they're much more likely to recommend things that are 1, that are available or that they have a slight preference to, or that they're well-resourced to do.

Different surgeons may have a different comfort zone. They might feel more comfortable with some procedures over other procedures so, as I said earlier, if a woman has any doubts about what she's being told or whether she thinks she'd like to have another viewpoint, or another opinion, the most important person in all of this is the woman. It's not the surgeon and it's not their sensitivities; it's what she's comfortable with.

As I said earlier, I think that trust between patient and doctor is very important so, if you don't feel you've got that trust relationship and that you're confident to go ahead with the sort of reconstruction that's been discussed, then I think, get another opinion or even if you're not ready to have the reconstruction, think about having it as a delayed, and getting some other opinions on different ways to do that reconstruction.

I think it's important to understand that it's not an exact science. The surgery itself is not an exact science. Even though we take measurements and we try to volume match and we try to give the sort of size and shape that a woman wants, it's virtually impossible to make everything perfect; even when we do bilateral mastectomies, it may not be possible to make everything perfectly symmetrical even though that's how I aim to do it but as I said earlier, I think it's really important to understand that there are controversial areas.

When you go to see your specialist, you're relying on their expertise; you're relying on their hopefully, expansive knowledge, so make sure you're seeing somebody who has a large experience in what they're doing. Make sure that they're suitably qualified to give you that information and bear in mind that, they are going to have their own opinions which they've determined over years and years of experience; what in their view works well for them and what in their view doesn't work well.

There's also evidence - plenty of evidence around to show what things work and what things don't; what sort of complication rates you might expect, etc. What someone accepts is a reasonable complication rate might not be the same as what someone else expects is a reasonable complication rate so again, it's about meeting expectations of both the patient and the surgeon. I reiterate, there are controversial areas and where there are controversial areas, have that discussion with your surgeon.

Emma – Breast surgeon: It's okay to advocate for yourself. It's okay, so it's okay to be educated - it's good to be educated. It's good to come informed and I guess this harks back to that second opinion question as well so, if you feel as if, maybe there are areas to explore which haven't been brought up with you de novo, which they generally should be, but if they're not, feel free to ask questions and then if you don't really feel like you're getting the answers that you're looking for, then don't feel bad about advocating for yourself and getting a second opinion because breast surgery, in general, has really developed in recent times.

With the advent of oncoplastic breast surgery and with our understanding growing about the importance of reconstruction in general, and the role of immediate versus delayed reconstruction, it's a space which is malleable and it's changing. So sometimes you need to advocate for yourself and seek out that information.

Jen – Breast care nurse: Reconstruction is complex. There's lots of pros and cons. You might go through all these stages of gathering information and decide not to go ahead and that's fine. You might go through these stages and decide to do it a little way down the track when it suits you.

The ball is in your court. Don't feel like you must do anything - come back and get more information if you need to. Your specialists and your treating team should be able to give you that information and support and you shouldn't feel pressured either way and your breast care nurse team are here to support that - that's what we're here for. We're not there to talk you in or out. It's a personal decision, but it does have lots of pros and cons so it's not a ‘nothing’ so come talk to us about it.

Suitability and eligibility for breast reconstruction

Emma – Breast surgeon: There are some criteria with construction which will come up when you come in to discuss what the options are, and one of them is your BMI, your body mass index, and the other one is smoking, and the third one is comorbidity so other sorts of medical conditions. The reason those things come up is not because it's a personal judgment on any individual, it's just that those are very real things that impact the success rate of reconstruction. At the end of the day, we want our patients to have the best chance at the most successful reconstruction available to them, and we don't want anything that's modifiable to put that in jeopardy.

Sometimes, subsequently, in fact, often times, subsequent reconstruction efforts after one reconstruction have failed, just don't get the same quality results as if it had gone well the first time, and if that's due to a factor that's completely out of our hands, well we just have to live with that and do the best that we can and move forward. But if it's due to something that was preventable, then that is very heart-breaking, so I guess that's where it's coming from - it's coming from a place of wanting to help people succeed and wanting to be successful in the reconstruction in the first instance if that's at all possible.

Owen – Breast surgeon: It's a very, very personal decision and our job as the treating surgeon, is to make sure that the woman is fully informed and that she has choices.

All women may not have the full range of choices - she might have a limited range of choices, so our job to make sure they understand what their choices are and what their options are.

If I look at all the women I treat who have a mastectomy, I would say about 40% of women end up choosing to have a reconstruction. Most the time that's immediate, though some we're not ready to make that decision and will come back and have a delayed reconstruction and I think that's appropriate. Around about 40 to 50% of women when given the choice will choose to have it.

Some women prefer not to have a reconstruction - it is a lot more surgery to have on top of the cancer surgery, so they may choose not to have it, and wear prostheses in a bra and be very happy with that; be very content, and very comfortable with that. I don't think we should have any preconceived ideas about what any individual woman would want - I think it's her decision and choice.

Michelle - Consumer: Everybody's different in terms of what they want. I've met women that wanted to go flat, and they didn't want to have a reconstruction, and that is what is right for them. So, what is right for you, is something only you can decide. For me, I wanted to have a reconstruction and so I was grateful that I was able to have that.

Andrew – Plastic surgeon: It is a known problem in Queensland that depending on where you are in the state, there may be differences in terms of access to reconstructive services, which is partly just determine by geography; partly determined by access to people who are sufficiently trained to provide reconstructive services but, we would like to think that, as I said before, people can be referred to hospitals where those services are offered at a higher volume that should be open to anyone, no matter where their initial diagnosis is made.

Seeking a second opinion

Jen – Breast care nurse: If you feel uncomfortable, you feel you haven't gotten the information you need, if you're not sure that you're being presented all the information, I'd seek a second opinion. Sometimes a second opinion can be good in that it will give you the same opinion that the first person gave, and you think okay, I don't have other choices here. But if you're uncomfortable, I think you should also talk to your breast care nurse who will be aware of your options locally and regionally.

Andrew – Plastic surgeon: My thought is that if a patient gets an answer that they don't feel comfortable with, or if it disagrees with something else that they've been told or something that they might have read, they have every right to ask for a second opinion and that shouldn't be viewed as a negative. No matter what circumstances, a patient has the right, again in public and private systems, to ask for a second opinion if they feel like they’re not getting access to the best of services.