Communicating with your health professional

Kellie Curtain [00:00:05] Let's be upfront about communicating with your health professional team. It's about knowing who to ask what questions because believe it or not sometimes over-communicating can become an issue. In this edition of Upfront we're going to discuss how to find a happy medium and who or where to go to get the support you need. Joining us is oncologist and and BCNA board member Professor Fran Boyle and breast cancer survivor Leslie Gilham who is also a BCNA consumer representative, which means she's often called on to provide a consumer perspective when decisions are being made about treatment, policy or research.

Kellie Curtain [00:00:45] Over-communicating is something that I would not have associated with health professionals. Tell me more.

Fran Boyle [00:00:52] Well I think when you are diagnosed with a serious illness like cancer there is a wealth of information out there and people who are information seekers may sometimes find they are bombarded from all directions with information that's of differential helpfulness,  shall we say. So it might be Dr. Google, it might be the person over the back fence who was diagnosed last year with colon cancer and it might be really great information that comes from BCNA. In that swirl of early diagnosis how do you find the pathway to what you need and not get swamped? And how do you actually work out what questions are relevant to you and your particular kind of breast cancer that may not be relevant to someone else? That swirl can be important to get through for some people. For others they just shut down and they don't ask any questions. They may be so shocked by the diagnosis that they just kind of get on the Pink Carpet Ride and off they go and it's six or 12 months later when they say oh my god what just happened to me? And how did those decisions get made? And that might be a time when they start to ask a few more questions. Now ideally there's a happy medium isn't there between those two extremes: tailored information that's right for that individual circumstances, a treatment team that's responsive to those questions. We don't live in an ideal world so sometimes it takes a bit of learning on both sides to come to that happy medium.

Kellie Curtain [00:02:32] So where's a good place to start?

Fran Boyle [00:02:33] Well a good place to start is your GP and most GPs will have been through the experience of breast cancer with a number of their patients. They'll have some idea of how the treatment plan usually works. And they'll also have some idea of who in your local area in your breast cancer specialty teams is likely to be a good match for you as a personality. And you know there are different choices about a very old and stately oncologist such as myself might be really good for people who have lots of menopausal symptoms and are really cranky, for instance, because I can relate to that!  Whereas you might want the young gun with a research background if you're someone who is you know regularly reading the New England Journal. So it's you know horses for courses once you actually get into a treatment centre you'll usually find a breast care nurse and they also know the ins and outs of how to get information for you how to steer you in the right direction or how to sort of help you rehearse if you like your questions so that when you get into that consultation you've actually got your thoughts prepared ahead of time - you know what to ask and maybe you've taken someone with you as a family member or friend to scribe. That can be really useful as well.

Kellie Curtain [00:03:52] Leslie, what's your experience both as a survivor and having listened to so many who have had the experience?

Leslie Gilham [00:03:59] Yeah look I personally had a very good communicating team I guess so I had a multi disciplinary team so my GP was actually quite shocked with my diagnosis because she didn't think that it was going to be a positive diagnosis. So she sort of referred me off quite quickly I think she was  wasn't sure what to do next in that space but I then met with my surgeon who then started to do all the testing and that's the thing that's required. But the whole time she was keeping me informed of what that test was looking for and and how it was going to help with the diagnosis. And then I remember the day of the diagnosis being still quite shocked even though she she had mentally prepared me for that diagnosis. But she sent me away to think of questions ,anything that I wanted to ask her about, and come back in 24 hours which I did with my husband in tow and she'd organised for me to then meet my whole team that was going to be working for me to try and overcome the diagnosis so I found that really reassuring because I got to meet everyone I could see the path that my journey was going to have to take. And I found that really good but in saying that I have spoken to other women who don't make that connection straight away. So they've quite often. I have heard of women getting a second opinion or trying a different stage or a different oncologist. And like Fran was saying it's such an important I guess connection you have to make with those people that you need to be comfortable and you need to be comfortable to be able to ask those questions that you need to ask. And in saying that to some people want to ask lots of questions others might only want to know the basics. So I guess that's more from a clinician's perspective that they have to be able to read that person. And that's where the breast care nurse is quite important because they have the ability to draw things out of you that you wouldn't necessarily think to ask. And and I think that's really important because then it sort of gets you thinking a bit more.

Kellie Curtain [00:06:28] Fran, as an oncologist how do you juggle how much you should share, you know and not overshare for wanting or not wanting to frighten people.

Fran Boyle [00:06:44] I think you often guided by the woman and her family as to how they want things pitched. And I would usually start by just acknowledging when people meet me that I've usually already had some pretty scary information and I want to know how they are travelling and some part of how they respond to an open question like that will usually give you a flavour of whether there's still a rabbit in the headlights and you need to keep stuff pretty basic on whether they've gone off and read the My Journey Kit or Hop and Hurdles they've well prepared and you know they're ready for more information. So you're right, there's a bit of an art form in that and checking back in with the patient's important too. So we know that health professionals get good at explaining particular concepts about cancer or its treatment and that they might do frequently maybe 10 times a day on a really busy day. And the problem for the health professional is that no matter how good that explanation is the fact that they've said it 10 times before means they speed up when they're actually delivering that information. And that may be make it harder for the patient to butt in and ask questions, to stop and say "I don't understand".

Kellie Curtain [00:08:11] Which must be very real.  Because you don't want to be sitting there and admit to not understanding that it's confusing or whether it's just too much information at one time or that simply you just don't understand.

Fran Boyle [00:08:24] That's right. And the oncologist is in mid-spiel and they think they're giving you the right information. And we found this out from tape recording doctor's consultations actually because if you tape someone for a whole afternoon clinic you can tell that they're on a spiel because they speed up and I know the breast cancer spreads into the blood not just into the lymph nodes and that's why you need chemotherapy because that travels everywhere in your body and you can tell I've said that 100 times because I don't even need to breathe when I say that. And so just being able to say to your oncologist, hey can you maybe just slow down a bit.

Kellie Curtain [00:09:01] Which is sometimes easier said than done!

Leslie Gilham [00:09:05] I understand the pressures that the oncologists are under. But it does become. And the other thing to keep in mind too especially maybe not so much once you get to your oncologist but with your surgeon all you're still hearing is the diagnosis so you're actually not taking in a lot of what's being said. So that's where like the My Journey Kit and things that BCNA provide and and in the My Journey online tool are really important because you can go away and refer back to them. So things I found it personally really important my clinicians always drew me pictures and then I had such a simple ...

Fran Boyle [00:09:45] Oh we teach them to do that.

Leslie Gilham [00:09:46] That's great. And I learned which clinicians are good drawers. Yeah yeah. But I found that really helpful because it's sort of in picture for me is quite a simple thing to understand and I think that can go across every demographic I guess a picture tells a thousand words. I found that really helpful. I mean you could jot down words next to those pictures and then refer back using the other information that you've got from places like BCNA.

Fran Boyle [00:10:17] One of the reasons we teach them to draw pictures is to slow them down because you just can't speak as quickly when you're drawing a picture. And so the picture drawn is so much better than here's one I prepared earlier which looks like the Mona Lisa and is all fabulous and beautiful but much less use to you.

Kellie Curtain [00:10:33] Is that why they have those 3D models on their desk?

Fran Boyle [00:10:36] Because then they can talk faster. However the one that I drew for Leslie would just force me to slow down. It would force me to make eye contact. I would know better whether she was understanding that she starts pointing to it. I'm winning because it means she's using that to put things together in her head so saying to your oncologist can you slow down a bit. Or is there a way you show me a picture that would help me understand that might be something quite simple that you could do without offending them because they've all been to communication skills. And they all should know that.

Leslie Gilham [00:11:13] So and I think also too that is a reassuring thing for a patient because it becomes quite personal. Then the diagnosis the treatment plan. So that's really important.

Kellie Curtain [00:11:28] So when you're doing your own research which is always going to happen soon after a diagnosis. People quite often will go to Dr. Google will read everything they can get their hands on. How important is it to go to a trusted source you've mentioned before that now BCNA has an online tool. Do you see that as a really good way to maybe prompt questions that you didn't already have or indeed do away with some questions that you were going to ask.

Leslie Gilham [00:12:04] I think it's a really good tool. Any of the information sheets prior to the online tool and the old hard copy of the My Journey Kit because it's written in layman's terms so it's written in terms that a patient will understand. So it does prompt questions because you put two and two together reading something like that and go ah, that's what they were talking about. And you mentioned Dr. Google it's such an important thing to have a trusted place you can go for information because there's not only Dr. Google, it's family and friends and everybody always say it's a bit like when you first have your first pregnancy. Everyone wants to tell you a bad story and it's the same when you have a cancer diagnosis everybody wants to tell you the worst thing that happened to a friend of a friend of theirs so it's really important for your own mental health to you that you can go somewhere and get really good information.

AD [00:12:57] BCNA's My Journey online tool is a new resource that gives you instant access to trusted up to date information which is relevant to your breast cancer journey. For more information visit My Journey dot org dot A-U.

Kellie Curtain [00:13:16] Fran, who should your A-team be?

Fran Boyle [00:13:19] Well in the early breast cancer setting, team captain we usually allowed to be the surgeon because they're often the one who's helping you to choose that initial treatment and assembling the multidisciplinary team around you. In the metastatic breast cancer setting it will usually be the medical oncologist of your team captain and will be working at assembling the team you need. And when you're first diagnosed with metastatic disease it might be a different team to when you're a little bit later on perhaps towards that last year of life where you might need more palliative care involvement, more allied health, a social worker and so forth and at the beginning what you need is a neurosurgeon or an orthopedic surgeon. And so they'll have to adapt that team as you go along. The bit in the middle which is your survivorship care team is really an area of current research. How do we best assemble the people you need when you're recovering from breast cancer and from the side effects of treatment? And there are a number of places around the country that provide survivorship care assessment and planning and will help you with an exercise physiologist if you need that someone to manage your menopausal symptoms someone to help with anxiety, fear of recurrence etc. And what we're testing at the moment is whether some of that could be delivered by tele-medicine so that people who don't live in a big city might be able to access those services a little bit more easily. So there are there are still some gaps along the way and there are areas of current research.

Kellie Curtain [00:15:01] So as you just mentioned the team changes. Is there one constant that will or should be with you from go to woe.

Fran Boyle [00:15:12] Probably your GP. And ideally in the current era the nursing coordination will continue. So how the early breast care nurses might morph into metastatic breast cancer is this again is the subject of fortunately some new planning and some new funding to make metastatic breast care nurses more available because we know they're such an important source of information and support in early breast cancer but probably need to be slightly different people in the metastatic setting with more understanding of chemotherapy for instance and different team structure. So we're working with BCNA and McGrath Foundation and the medical oncology team to try and flesh out that role and hopefully in the not too distant future if you have metastatic disease you'll find you can latch on to a nurse coordinator as well.

Kellie Curtain [00:16:11] Leslie what do you hear from other women about their concerns in communicating with their team or the things that they really like?

Leslie Gilham [00:16:19] I think one of the main things is that they feel because you're talking to a professional and an expert in their field, they feel that their questions aren't going to be important. And so I always in the way that I do reassure them that no question is not important. Whatever's concerning you is what the question should be about. So I think that's the main thing you should never feel that you can't ask a question. And really I think from what you hear from Fran, clinicians are waiting for you to ask questions it's just that people feel quite overwhelmed and don't feel that the question they're going to ask would be relevant or it might be it might be something simple about can I continue to play netball or can I do something that I normally do in my life and you get a quick answer back that you came and you know you can continue on with normal life as much as you as possible. So yeah there's a lot of outside pressures. It's not just about the cancer diagnosis and the cancer treatment you have families you have children it's all these things that you need to know. You know  even after surgery, how soon can I drive? Basic things. Everyday things that you might think aren't important but they are important and the clinician will answer that for you.

Kellie Curtain [00:17:34] And sometimes it must be tempted to listen to someone who's been there even though their experience is completely different. So Fran how do you balance that between. "I've got a sore arm, my cancer's returned" and that's because you hit it on the door as you walked through?

Fran Boyle [00:17:51] That's right. The we talk about it as cancer of the big toe syndrome and the good news is nobody ever got cancer of the big toe and cancer generally doesn't spread below about the middle of your upper arm or the middle of your thigh. So if you put pain in your hands and feet it won't be cancer. And the reason cancer doesn't spread into those places is because there's no marrow in the bones there. So things are pretty cold and hungry and it's the middle of your body that's actually where the action is and it's normal when you've been through cancer treatment to be a bit more vigilant about your body afterwards because you've experienced a whole bunch of things that people keep asking you about you know, are your fingers and toes tinglin? Are you nauseated? Have you got a headache? And so every day you get up and you do this mental, you know, physical examination to work out "am I still alive today and what have I got cancer today?" And one of my patients actually formalized that into a little routine that she would do each morning starting with their head and working down and she'd go "Well I've done that now and I don't have cancer today" and she'd just put it aside mentally, which was her way of coping and if she wasn't feeling well she knew that her port of call first was the GP in that survivorship phase because most things won't be cancer. Apropos of the Dr Google and searching for things on symptom checker and so forth you can really end up down a rabbit hole and that's why we encourage people to go to the trusted sources. When your Doctor Googles - of course they in my case Professor Google we have some different places that we go. So we often go to the published medical literature and there's a place called PubMed where you will find that and the information that you put into your PubMed search will be much more refined in terms of the kind of cancer you have, the question that's being asked and is there relevant research started to answer that question - but it's in medical speak. And so if you're not familiar with interpreting that PubMed is probably not the place to go. And some of the major cancer centres - ASCO which is the American society has an excellent website called Cancer dot net which has fantastic information in a little bit more depth and not so relevant to the Australian healthcare system. But for someone who wants to delve a bit deeper that's a good place to go.

Kellie Curtain [00:20:27] So perhaps the lesson here is to really make use of medical professionals and their use of training and they're doing that so you don't have to.

Fran Boyle [00:20:36] Exactly. And it's because they know what words to put in there and so the words might be Latin words that might actually get you to the right place to go. So ask your doctor if you don't know, can they look it up for you because they'll have a computer on their desk.

Kellie Curtain [00:20:52] So how important is it that the individual professionals work together.

Fran Boyle [00:20:58] Critical.

Leslie Gilham [00:21:00] Critical. I agree. Because they they need to know everyone needs to be on the same page. So from a patient's perspective you don't want to be hearing one thing from your surgeon and a different thing from your oncologist. I think it's really important that they all work together on your behalf.

Kellie Curtain [00:21:16] How can you best facilitate that as someone with breast cancer?

Fran Boyle [00:21:20] Because there are structured multidisciplinary teams in most hospitals public and private around the country now having your specialists from the one place and work in a team together is probably the easiest way. The challenge comes when there's a particular treatment that you need that might not be provided there but actually is available somewhere else and getting your own team to help find you, let's say, a clinical trial at another institution is easier than just randomly trying to sort it out yourself and I think it's also helpful if you are going somewhere different to have perhaps a short term period of treatment with a different doctor that they're aware of keeping your old team in the loop because usually after that treatment's finished you'll go back. Sometimes you get to place B and you think  "oh these guys have really got it together. Can I stay?" And it may be that he will feel more comfortable in that environment. Simple things like they'll have places they like to get their scans done. They'll have people they like to read their mammograms. They'll have people that they like to give you lymphoedema advice trying to suss that out rather than a bunch of random strangers is actually going to work better.

Leslie Gilham [00:22:38] And I also think too from a personal perspective my GP was involved from the whole time too. So my GP was invited to phone in to the in the multidisciplinary team meeting so she could keep on top of where I was at. GP's aren't specialists in breast cancer so any information that's provided to them is really important especially in the survivorship stage when you're fed back and they've already got all the information they need from my specialists on my where I'm at with my treatment.

Kellie Curtain [00:23:09] And did you have any concern given that a GP is not a breast cancer specialist. Was there any uncertainty on your behalf or that you hear from other women like oh yeah but my GP isn't specialised?

Leslie Gilham [00:23:23] Not really in my own personal situation. I have heard that it can be an issue but I think it's really important because they do play an important role especially in rural and remote areas. And now because of the pressures that the health systems under and like Fran mentioned earlier there's people keep being diagnosed as a healthier as a healthy survivor. You don't want to be taking up a spot for a newly diagnosed person so that's where their role comes into being more important is after that time that you've had with your specialist you get referred back to them they also are really important in providing other things other support like exercise advice and and they know what you can and can't do given what treatment you've had and things.

Fran Boyle [00:24:12] And the things to remember is that most people who have breast cancer today diagnosed won't die of it. They'll die of something else. And so what you don't want is for everybody's attention to be on the breast cancer and have nobody take your blood pressure or check your cholesterol. I'll give you some advice about losing weight or exercising more because actually heart disease is the biggest killer of women in Australia not breast cancer and it's really important therefore that the breast cancer doesn't gazump every other aspect of your health care and your GP will be better positioned to give you that advice. They'll also be in a position to help you with things like mental health care plans which your treatment team can't do and your chronic disease care plans which help you to get access to exercise physiologists and so forth.

Kellie Curtain [00:24:58] So the GP is key in the overarching theme of your health and wellbeing.

Kellie Curtain [00:25:06] Thank you Fran and Leslie for joining us on upfront production of Breast Cancer Network Australia. This episode was made possible through the Australian Government's Supporting Women in Rural Areas Diagnosed With Breast Cancer Funding. The opinions of our guests are welcome but not necessarily shared by BCNA. Please contact your health professional with any concerns or queries. And we'd love to know your thoughts too. Send us a message on social media or leave a review on Apple Podcasts. It helps other people find us. For more information on BCNA and the resources we've talked about in this podcast visit BCNA dot org dot A-U. I'm Kellie Curtain. Thanks for being Upfront with us.