Research Investigating New Treatments to Managing Lymphoedema [Interview][Transcript]

Professor_John_Boyages_Lymphoedema

Guest: Professor John Boyages
Presenter: Wayne Bucklar
Guest Bio: Professor John Boyages is a cancer specialist with over 30 years experience in the diagnosis and treatment of breast cancer. He leads the Advanced Lymphoedema Translational Research Program at Macquarie University which has already achieved world recognition. He has published more than 140 research and clinical articles. Since April of this year, he is now the Professor of Breast Oncology and Associate Dean (International and Engagement) at the new Faculty of Medicine and Health Sciences at Macquarie University.

Segment overview: For our Health Academy Series today, we welcome Professor John Boyages – Director of the Lymphoedema Research, Education and Treatment Program of Macquarie University. He is here to impart his knowledge on the topic of Lymphoedema. Learn who is at risk of lymphoedema, how common it occurs, what women can do in order to reduce the risk as well as the latest update on treatment and research for this condition. Professor John Boyages is a radiation oncologist and author of the “Taking Control” series of books for patients: Breast Cancer Taking Control, DCIS of the Breast and Male Breast Cancer.



Transcription

Health Professional Radio

Wayne Bucklar: You’re listening to Health Professional Radio. My name is Wayne Bucklar and this is the Health Academy, a series where we talk to the academics around the world about what’s happening in health and what their specialties are and what is there to star. Today my guest is professor John Boyages. John’s with Macquarie University and he is the director of Lymphoedema Research Education and Treatment Program at Macquarie University. Welcome Professor to Health Professional Radio.

John Boyages: Thank you for having me Wayne.

W: Now John I can say Lymphoedema, but it takes me a bit of practice. Tell us for our audience out there, what is your area of research?

J: Look my main … I’m also a professor of breast oncology so I’m a breast cancer specialist.

W: Uh huh.

J: And I’ve written three books on breast cancer for patients, the Breast Cancer Taking Control series. But at the Macquarie University Hospital which is Australia’s first not-for-profit University private hospital, I fell into Lymphoedema I guess and I must say our research program has been accelerating ever since in Lymphoedema. I wouldn’t have thought that five years ago, but the more I look into Lymphoedema the more I realize that it’s such under researched and under resourced, and poorly understood condition.

W: Now this is of course one of the great joys and the great curses of research, is that you’ll never know where it’s going to go and you just have to follow it as it goes along. What have you discovered that as you’ve been researching in lymphoedema?

J: Look I guess the first thing is obviously lymphoedema occurs when the lymphatic is disrupted thru surgery, usually axillary dissection in a woman but it could be groin dissection for men with melanoma or women with gynecological cancers. But obviously the first thing that happens is that there’s like a back pressure occurs and it’s a bit like putting rocks in a vast flowing river you put lots of rocks in, the water starts to dam up and then it flows into the tissues. And so the first thing is we understand some mechanical things but I guess the thing that I did not know to be honest five years ago and most people, most oncologists I talked to and most breast surgeons I talked to did not quite appreciate that fluid stimulates stem cells, stimulates in the deepest sites in the lymph to expand and deposit fats, now I did not know that. And a lot of in the early stages of lymphedema, you can treat it with a compression sleeve or you can treat it with bandaging or massage, skin care is really important.

W: uh huh.

J: Even now with creams like … or moisturizers, blend moisturizers. But what I didn’t realize is that after a while fat just gets deposited into that arm and it becomes a very hard fibrotic arm because of fat deposition. So we’ve been doing a lot of research around that whole area of fat and how do you diagnose it, how do you treat it and we’re doing some laboratory research on it as well.

W: John I think you’re probably at the forefront of this worldwide pretty much. What do you think the treatments are going to be that emerge from your work?

J: Well we’ve set up an Advance Lymphoedema Assessment Clinic at Macquarie University Hospital, it’s the only one in the Southern hemisphere. There’s probably four or five centers in the world that are doing this but not quite like ours where we’ve got a rehabilitation specialist Dr. Helen Mackie … we’ve got expert Lymphoedema therapists such as Louise Koelmeyer, two plastic surgeons Dr. Thomas Lam and Dr Quan Ngo and myself. Essentially we have a meeting, we discuss their cases but the things we’ve discovered is that we do MRI’s for all our patients, we can then work out how much fluid is in the lymphous fat, we can we do detailed measurements. We use an Australian invention called Bioimpedance actually it’s called the “L-Dex,” a company called ImpediMed invented that in Queensland and that’s being used in our patients to detect how much fluids they’re in. And then for certain patients we take them on to advanced surgical techniques such as liposuction or lymph-node transplant and probably within the next 6 to 12 months we’ll be doing “lymphovascular anastomosis,” we’ll join lymphatic vessels to veins.

W: Uh huh. Liposuction is not something that kind of I’ve heard of in terms of lymphoedema, is that something that’s giving good results?

J: Look, we’ve just published our first paper in the Annals of Surgical Oncology and to be honest Wayne I was a total skeptic when I was Head of Cancer Macquarie University Hospital, I ran various workshops and got all the best cancer people together and one of doctor… said “John I’m looking for plastic surgeon to do liposuction for me for my advanced lymphoedema patients.” And I really thought she had rocks in the head to be honest because we’re trained we can’t put needles in on that side and that can cause cellulitis. And I know a lot of your listeners are in emergency ward, emergency departments – they would see many patients with cellulitis and that fluid that stagnant is more prone to infection, a little scratch for example.

W: Yup.

J: So the thought of cutting the arm and with tiny I guess 5 or 6 millimeters cuts – you don’t even need stiches for by the way, inserting their liposuction catheter not the standard cosmetic one but it’s slightly modified, and sucking out all this fat and some fluid. And it was really foreign to me but I must say we have done close to 45 patients now, we’ve just published I think on our first 30, every single patient had a complete reduction in their arm, now up to our longest one is I think it’s about 30 months. And we’ve also seen 20 new data from Sweden recently with Professor Hakan Brorson, whose the “Father of Liposuction” visiting us and saying how impressed he was with our program and helping us to the largest leg we’ve ever done. You’ve got to remember that this people are suffering – they can’t lift their leg, they can’t wear trousers, or they can’t wear boots, sometimes can’t even brush their hair, find it hard to cuddle their partner, find it hard to lift grandchildren. We’ve had a woman we treated in Tasmania who rang us and said, “I want my arm cut off” and that lady is driving again. So when you see these life changing stories I must say I’m a total convert, it’s just unbelievable. The whole persona of the person changes, they start wearing bright clothing, a lot of our patients come in with long boots and tights, colored tights because these are things they couldn’t do before. Some of our patients would fly to Vietnam and get their clothes tailored because they couldn’t find clothes with one arm bigger than the other. So it’s quite heart breaking and we’re helping people.

W: It’s not a condition you can hide under a scarf or a different brand of maker … it’s obvious and impeding.

J: Well and this is our we’re doing with our national surveys with the Breast Cancer Network of Australia databases and our own patients and I’ve seen women breakdown they said, “Look we’ve been through the pain of mastectomy, chemotherapy losing my hair, body image and sexuality issues” and then they can hide the mastectomy scar but they can’t hide this arm with a compression sleeve going thru the checkout at Coles and people come up and say, “What’s wrong? Did you break your arm?” And a lot of them become recluses.

W: Yes, I can believe that. Now John it sounds like fascinating research and I’m sure that a lot of our listeners will be keen to track some of these down. I presume that the Macquarie website is the place to go?

J: Yeah, so I think muh.org.au is the place to go if anybody wants a copy of my book they can get it from bcpublished.com and don’t hesitate to call us if any patients are interested. Just one point, I do know that a lot of people working in those emergency rooms, many patients come in and they say, “Don’t touch my left arm because I’ve had a left mastectomy, …clearance” and you can’t do a blood pressure on that side. A lot of that is sort of worst case scenario and we find many patients have arms that are destroyed by chemotherapy and so on, with very good careful aseptic technique, there’s no problem with that. But obviously you’ll get some push back form the patients, but I think in an emergency, it’s okay to use the affected arm. But yeah look, we’re delighted about this lymphoedema program, we’re doing basis research, we’re doing psychological research, and economic research. The absolute cost of bandages that these poor patients have to pay in compression sleeves actually means they have less money to even go out socially.

W: That’s an intriguing research and it sounds like research that will be very beneficial to people very quickly. I’ve been talking with Professor John Boyages from Macquarie University Hospital about his research in lymphoedema, but I’m also keen John to get you back to talk about your books the Talking Controls Series, the patients the Breast Cancer Taking Control, these areas of the breast, and a particular interest male breast cancer – so another day we’ll have a chat about those. For people who are looking for those books you can also find them through the publisher and John I didn’t make a note of it, can you just mention it again for me?

J: bcpublished.com is the website and if anybody wants to contact our clinic its 9812 3598, that’s 02 9812 3598 these are for patients who got untreatable lymphedema, they’ve been to lymphoedema therapists, compression’s stopped working and bandages stopped working, whereas there’s lots of lymphoedema therapists out there on a particular registry. Look up the Australian Lymphology Association and you’ll find therapists likely and women and men can even register on a lymphoedema registry as well which has just been released lymphoedemaregistry.org.au

W: You’ve been listening today to my conversation with Professor John Boyages from Macquarie University Hospital. We have a transcript of this interview on our website, there’s also an archive on SoundCloud and it’s available on YouTube as well. That’s at www.healthprofessionalradio.com.au or at www.hpr.fm. John thank you very much for your time this morning, it’s been a pleasure chatting to you and very informative.

J: Thank you very much for the opportunity.

W: This is Wayne Bucklar, this has been Health Academy on Health Professional Radio.

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