Ad [00:00:00] BCNA's Helpline provides a free, confidential phone and email service for people diagnosed with breast cancer. BCNA’s experienced team will help with your questions and concerns and provide relevant resources and services. Call 1800 500 258 or email contact at BCNA.org.au
Kellie [00:00:29] Breast Cancer Network Australia acknowledges the traditional owners of the land and we pay our respects to the elders past, present and emerging. This episode is produced on Wurundjeri land of the Kulin nation.
Ad [00:00:45] Welcome to upfront about breast cancer.
Kellie [00:00:53] Let's be upfront about experiencing a breast cancer diagnosis as a male. In this episode, two men diagnosed are going to share their stories and experience of living with breast cancer, which is rare in men. But around 173 men a year are diagnosed with the disease in Australia. Harry was diagnosed with early breast cancer in 2005 and had chemotherapy and was in remission. In 2018 at a routine appointment, Harry was told his cancer had progressed and was diagnosed with metastatic breast cancer. Pieter was diagnosed with triple positive grade three breast cancer, which had spread to a centennial lymph node in 2021. This episode of Upfront about Breast Cancer is an unscripted conversation with our guests. The topics discussed are not intended to replace medical advice, nor necessarily represent the full spectrum of experience or clinical options, so please exercise self-care when listening to this podcast, as the content may be triggering or upsetting for some. Welcome to you, Pieter and Harry. Perhaps Harry, you would like to share how old you were when you were diagnosed with breast cancer and the impact that had on you.
Harry [00:02:19] In 2005, I was diagnosed with breast cancer and what happened to me was I was a bike rider. I was riding on a Sunday. I stopped at a red light and there was a lady next to me. We were talking to red light and I tried to keep up with her and the ride ended up being about 40 kilometres. When I got home, my breathing was very, very difficult and on Tuesday I went to see my GP. When I walked out of this room I walked back in and I said, just on my right breast, below my right nipple, there was a lump and it's been there for a few weeks. I don't know if it's anything serious. He told me to go and have a mammogram, and when the mammogram was done, the person taking the mammogram said to me, you’ve got nothing to worry about. Two days later, I was contacted. On the Friday I had all the X-rays done. On the Monday I had a mastectomy and I said to my wife, I don't want anyone to know about this because I'm ashamed, because this is a woman's disease. And for two or three weeks, I didn't really want to speak to anyone, but then I thought, I'm going to be around for a lot longer, going to lose my hair, people are going to know what's happened. And from that time on, I never worried about were there any more new bad ideas. Later, I stopped seeing my oncologist and in 2018, in November, I just had a routine check-up and my GP decided to check for cancer and two days later he rang me and told me to come in straight away. And the next time I went to see an oncologist I found out I had stage four metastasised breast cancer. I'm not ashamed and I'm not stigmatised at all. I do a lot with Breast Cancer Network Australia because I want people to know that men have breast cancer and I want people to realise that no disease should you be stigmatised for.
Pieter [00:04:41] Wow, your experience is different from mine. Very impressed that you went to the doctor when you felt the lump. My experience was a little bit different. My wife had, my late wife had had breast cancer. And so I was aware how the journey could go. But I had bleeding from my nipple occasionally, and I thought it was because I cut myself shaving and then it would go away again. And I should have gone to the doctor. I put off for a few weeks and it would happen again. And then eventually I felt a lump in the shower. Not a very large or didn't feel that large, and I went off to my doctor said, yes, you've got to go for, you know, the biopsies and everything. Sadly, they mixed my samples with somebody else's and when it came back, they said the fine needle aspiration says you've got cancer, but the core biopsies say you haven't. So, you know, they said we have to do it all again. And the big disappointment for me was I was 66 at the time. I'm 67 now. I was just learning to play tennis again. I've never played tennis in my life, so I took some lessons and I got onto the, you know, the forehand. And then I was trained on the backhand. I was about to learn how to surf, and I haven't played tennis since.
Harry [00:05:57] I find that in my journey you come across people, especially men, who think they're invincible. And they think twice about going to the doctor because it could affect, it could affect their invincibility. And if there’s one lesson, listening to this, don't take your health for granted. If it's the most minor thing, go to a doctor because you don't know. In my case, this little lump was nothing. I didn't have any pain. But because of something else, I went to the doctor. I probably would never have gone to the doctor. But if this is ten people listening to this, if there's 100,000 people listening to this, don't take your health for granted. Don't take your spouse's health for granted. Don't take your children's health for granted. Pieter, I'd like to ask you a question. It's probably a bit personal. If you don't want to answer it, it doesn't matter. But when you found out, how did you feel from a stigma point of view? It's hard to take. But were you depressed because of the disease? Were you depressed because it was a woman's disease.
Pieter [00:07:06] Look, I wasn't. When I went back to work after the operation of a mastectomy. There was one guy who asked me, say, well, are you all good now? And I said, Well, no, it's just the beginning. But he kept calling it chest cancer and I corrected him and said, No, it's breast cancer. Men get it. You know, have breasts, same tissue as women. And I've had one other quite a funny response at the beach. I had to swim without a T-shirt. And a guy said to me, Why didn't they cut your other nipple off? And I said, Well, why would you? They don't just cut you for nothing, you know? And it does look lonely, the other one. I guess I have been somewhat surprised. I was not ever in shock.
Harry [00:07:51] Yeah.
Pieter [00:07:53] I did go through a phase at the end of last year after chemo where I would wake up feeling angry. But thank goodness that's gone now. Yeah, but now I think, look, people probably do talk behind your back, but I've never really had an issue so far. But a lot of people say, what's wrong with your arm? And I would love to say it was a crocodile. Before my surgery, the surgeon and I discussed the options as the cancer had only spread to a single lymph node. The one option was for them to remove that and then give me radiation. The other was to remove all the lymph nodes and then not to do radiation, which is what the surgeon preferred. So I signed the approval for that. As a result, I developed lymphoedema in my left arm and I wear a glove and a sleeve 23 hours a day. It's a bit of a nuisance, but initially it was I didn't have, you know, the sleeves and that and it's really swelled up and you know, you have to do something. My partner had given me a very nice shirt. We were going out for dinner. I don't live with her. And I was ironing the shirt, I was late, rushing and when I went to put it on, I could not fit my arm through the sleeve and then I, I got help. And it's great. Now it's, you know, it's it's more or less a normal size. And I have a wonderful physio. She used to be a veterinarian in Africa, fascinating woman. And, you know, if it wasn't for her, it's so I have it under control because she said otherwise you would just have a very heavy arm that's uncomfortable. You know, I couldn't bend my elbow, really. But, yeah, it's as good as it can be now, so some people do get it a lot worse. So, yeah, I'm lucky in that sense. So, Harry, how did you find chemo, surgery and then coping with the many side effects that, you know, do not happen to everybody.
Harry [00:09:48] When I first started chemo in 2005, when I first found out, side effects were there, I had ulcers in my mouth, had various other things, but it wasn't something that, you know, I'd vomit a bit. It wasn't something where I stayed in bed 24 hours a day. This time, as a result of the 2018 episode, I've been on various tablets and injections. Tuesday, a week ago, I started chemotherapy. At this stage, I can't feel any side effects, but I've got a pretty rough idea about what's going to happen. In 2018. I found out it wasn't just breast cancer, it was metastatic breast cancer, which means it goes through other parts of the body and there's various organs in my body where cancer exists, and every treatment I have tries to slow the progress. The progress is continuing. It might go at a slower rate, but the reason I started chemotherapy is because the previous regime I was on wasn't working. I'm expecting to start feeling the effects probably in the next few weeks. I've got one more treatment next week and then I have a week off and then I go for three weeks with treatment every Tuesday. Main thing I want to do in my life and I'm trying really hard is not let this take over my mental state. Now I'm sitting in a studio at the moment I'm enjoying doing this, but I just don't want to be in a position where it takes over and I get depressed. Probably 1% of the week that I'm awake, I might feel sorry for myself if anyone's listening to this is depressed, is close to dying, is in a bad way, I just want to say the place we are at the moment is far better than the place that we're going to go to. So enjoy every second that you're here. My late mother used to say, it's good to joke. You know what else? It's also good to smile. And whatever position you're in, it's tough. And my words are easy to say. Just try to smile for a few seconds every day.
Pieter [00:12:12] That is amazing. I admire you for just your incredible way of coping with it. You know, I've just gone through pretty much a year, finished the other week of treatment, and then there's another year to come, as always, something else. But we're obviously at different stages and I'm impressed that you've lived for that long. I didn't. Well, I don't know how long I'll live, you know. I hope it's a while. So suddenly it does change your focus where you think, what can I expect? Or you know. You know, I don't want to sit in a corner and be a victim. I've just recently become a grandfather. I've never had a grandchild before. And I thought, wow, their mother would have loved to see the girl, her names Juno and it’s actually a wonderful experience. And yeah, so, so you know, I'd like to hang around for a while to see my grandchildren. I'm desperately waiting for an apartment to be built. It should be finished the end of the year. I live by myself and sharing someone's house here. But it's sort of my own place because, you know, I messed around with lots of hobbies, but I sadly, I still work. And work interferes with life so much. There's not enough time, you know?
Harry [00:13:13] Well, I don't work, but I have various hobbies and I mentioned it before that I the work that Breast Cancer Network Australia does is fantastic. I am pushing them with the greatest tractor that you can have to have more to do with men's breast cancer. And you and I, Pieter, we're going to be remembered for a long time for doing this sort of work. You will receive a knighthood and so on.
Pieter [00:13:50] Hopefully not from King Charles.
Harry [00:13:52] Well, I agree with you. Okay. Oh, I agree.
Pieter [00:13:56] The Queen. I respect her, but not him.
Harry [00:13:58] You know what? I'm exactly the same. I'm not a royalist, but she's great.
Ad [00:14:06] BCNA’s Online Network is an active peer to peer support community where people affected by breast cancer can find information and connect with others who understand what you're going through. Read posts. Write your own. Ask a question. Start a discussion and support others. The online network is available for you at every stage of your breast cancer journey, as well as your family, partner and friends. For more information, visit BCNA dot org dot au forward slash online network.
Harry [00:14:38] Pieter, when you were going through the treatment, where did you get support from?
Pieter [00:14:44] So it was a mix of things. I was very fortunate that I was able to stay at someone's house immediately after surgery. I'd been and had to go back to hospital a few times and that helped because when they tell you to eat six small meals, eat healthy, when you feel like you, you know, you should be dead. Um, it's a tough one, and that helped a lot. Also, my employer helped hugely. I started four weeks before I was diagnosed. I was on probation and I thought I'd have to resign. And can you believe it? They said, Whatever time you need, we will pay. You don't need to take sick leave or annual leave. I was blown away. I did not expect that. So they have been really wonderful. And then family to a certain degree, although my kids, you know, they’re busy. I don't live with them. They're grown up. But yes, I think also the information on the BCNA website really helped as well as some of the online sessions. And that's been wonderful because your oncologist only has so much time. But I must say, the actual, the whole team from the surgeon was great, but then you don't see her anymore. The breast nurse was wonderful because there were times when I said to her, you know, I just want to go to sleep and not wake up. And she talked me out of it. And when I would see the oncologist and say, I can't do this, you know, I feel so terrible, I want to stop. And he'd say, Well, then you're going to live about this long, you know? And so that's been wonderful. And he’s a very caring person. You can email him, phone him, he can’t answer straight away, but to contact you that day, it has been hard. That I guess is long and short term side effects. Things like my vision is not as good as it used to be. I get tinnitus, so I hear cicadas and I know they aren't there. And the divisions particularly is troublesome because I like to do electronics and things, I do photography and I just got to get the focus right. You know, it's a bit tricky now, but yeah, look, I, I have so many things I want to do and I went to my storage unit yesterday and just see I have so many hobbies I need to stop working so I can play more. So that's helped me and definitely family as well. I have two brothers and two sisters, and you know, they would call me regularly during the treatment. And I must say for me, nausea was a major issue and most of the medications didn't work for me. I would elucidate from one of them and I said to the doctor, I'd rather be nauseous than hallucinate. Um, but ongoing, it's hard. So I look, I don't know if I have irritable bowel syndrome and I will probably go and see a gastroenterologist and or a nutritionist or dietician because, you know, it's a year now that I've been in treatment and it doesn't matter what I eat or don't eat, I can't solve it by myself. But no, I'm certainly, my hair grew back much sooner than I thought. And the downside is I have to shave again. But, um, in fact, the worst part about no hair was not having nose hair because it would eat, my nose would start running. And so, you know, and yeah, I think the north shaving was wonderful if you all that time you waste everyday you know I was only diagnosed a year ago and have gone through treatment. I know that you've now been diagnosed for a second time. How did that feel to you the second time?
Harry [00:18:22] I was obviously in the short term very, very shocked because I had I didn't have any symptoms. It was just a general check-up with a doctor I decided to do the second time. I didn't go through a stage of being stigmatised because I'd gone well past that, that issue. I really am thinking of the right word. I think I accepted the situation. It's not as if there's an alternative if you can't switch a treatment off or a treatment on. I'm very lucky with my oncologist that I respect her highly. I think one of the key issues when you have an illness, what helps you immensely is the confidence you have any medical term, and if you don't have confidence in your medical team, get another medical team because they're there to help you. You're not there to help them.
Pieter [00:19:23] So where did you, you know, get help in coping, BCNA network, your family, friends, etc?
Harry [00:19:33] When I was diagnosed. And it's just it's not just, the cancer issue. This year I'll be married 50 years to my best friend and we've had a wonderful life together. I cannot get more support from her possibly than she gives me. I've got two daughters who ring me, even if not every day, every second day. I see them at least once a week. I've got two sons in law. Could be my sons. I've got some grandchildren. And what I'm trying to convey, I'm one of the wealthiest people in the world. I've got more wealth than most people in the world with my family. I've got some good friends who some surprised me with their concern. But I'm very, very, not lucky, I'm very fortunate with the people I've got around me. I value them so highly that it's impossible to put a number on them. When I, the second time from 2019 on, I started looking around as to whether there are resources for men to go to with breast cancer, and I found BCNA. BCNA is a wonderful organisation and their intentions are 100% honorable. Pieter and I were part of a men's online conference and I found that to be incredible because I'd never spoken to any men really about the problem. It was a real eye opener. Pieter, you and I attended the first BCNA conference for men and it was led by, I think his name was Professor Boyages.
And I found it fascinating because I'd never spoken to other men, not one man who had what we've got. And I found it incredible to listen to their stories because there's not just more story out there. There’s a lot of stories. And men have to come out for their own welfare, not be ashamed. And you and I are doing this Pieter, is going to help them, I hope. And, I'm proud of what you are doing. I'm doing my best. And more men are going to find out about the usefulness of BCNA and there is articles about men's breast cancer on that article in BCNA as well. And I, I believe that everyone should go. Men, women should use that site. Men, especially because they can find out maybe what they don't know, because men, I think, know a lot less about it than women. But there are articles that explain very succinctly about men's breast cancer.
Pieter [00:22:51] I loved that conference with Professor Boyages. It was a shame that they don't happen more often because it's so lovely that all these people devote their time to us, you know, at no cost. I've attended a few of the online other not they conferences, such as podcasts, and sadly some of them I sign in, but then I don't have enough time because of work. But I find them really useful because the most recent one where this woman said, you know, they cured my cancer, but not me. And when she thought, I thought, wow, you know, I thought my side effects were bad. She had it far worse. And it's just great to hear from other people. So the online resources and the app, which at the time when I was first diagnosed, I didn't use unfortunately, but I used to write down, you know, because I’d go to the doctor and say, you know, my blood pressure is really high. And they would go, How high? And I'd say, Well, you know, I've got it recorded here. And I was disbelieving, but if you have it all. In the app, for example, then you can show them, look, on this day I felt really nauseous, etc. So I have found the online resource extremely, extremely useful. There's not a lot in the chat group as such, and I guess people do move beyond the I've been first diagnosed, you know, because eventually you don't want to always dwell on that. But always I'm always happy to talk to other people are very happy. I think two men so far in Perth that have had or have breast cancer, I don't think there's a group as such. I'm not sure. But yeah, so that's been the most useful resource to me.
Harry [00:24:34] How did you find the cost of getting sick? Were you shocked at the amount that you had to pay?
Pieter [00:24:41] I was surprised by how much the Lymphodoema garments cost. I haven't had to pay a lot for medications yet, but I'm about to commence a course of treatment. That would be quite expensive, but, and some friends have said, why don't you go on a great holiday? I said, No, you know, I don't want to get a year down the track and think I should have taken it. And I am in a position where I can probably do it. So it hasn't been too bad because I have private health insurance.
Harry [00:25:09] And Pieter, as far as I'm concerned, the cost hasn't come in to yet because I've got private health insurance as well. What's going to happen in the future, who knows? Pieter, if you had to give one bit of advice to men who had breast cancer, what would that be?
Pieter [00:25:28] So my main message would be to anybody that has a symptom, say a lump or something is please go and get diagnosed. Don't wait. I mean, I hope that mine would have gone away by itself, but go and see someone. That would be my main message, I think. And, you know, the treatment is available in private and public to anybody in Australia. So don't stay away from the from the doctors to start. That's probably my main message.
Harry [00:25:56] Pieter, really, it's been a pleasure talking to you because not everyone you talk to can you talk for as long as we have? Fortunately or unfortunately, we've got something in common. And Pieter, you've become a very good friend of mine because of this.
Pieter [00:26:13] It's been great talking to you and I believe you might be in Melbourne, so we might be meeting next month.
Harry [00:26:19] We'll go and get a coffee or lunch or whatever it is.
Pieter [00:26:23] Thank you.
Kellie [00:26:25] Thank you to Harry and Pieter for sharing their stories. If you're a male who's been diagnosed with breast cancer, contact BCNA on 1800 500 258 to be sent a Men get breast cancer too hardcopy resource and a copy of taking control by Professor John Voyage. My Journey has a range of resources for men with breast cancer so sign up by visiting my journey dot org dot a you and bouquets online network as Pieter mentioned, is also an online peer to peer support community where you can connect with other men going through a similar experience. Don't forget to subscribe to Upfront About Breast Cancer to ensure you never miss an episode and fill out the survey to tell us what you think, it helps us create content that's relevant to you and your breast cancer diagnosis. I'm Kellie Curtain. It's good to be upfront with you.
Ad [00:27:37] Looking for practical information to help you make decisions about your diagnosis, whether DCIS early or metastatic breast cancer. BCNA’s My Journey features articles, webcasts, videos and podcasts about breast cancer during treatment and beyond to help you, your friends and family as you progress through your journey. It also features a symptom tracker to help you manage the changing symptoms you may encounter during your own breast cancer experience. Download the app or sign up online at my journey dot org dot au
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