Episode 28: Men get breast cancer too
Let’s be Upfront about the fact that men get breast cancer too. 63 year-old Tasmanian Phil Purnell had no idea that men could get breast cancer when he found a lump in his breast and was diagnosed with invasive ductal carcinoma (stage 2 breast cancer) in March. In this episode, Phil shares a candid insight in to his breast cancer journey as a man, which was further complicated by the COVID-19 pandemic.
Also joining us is breast cancer specialist, radiation oncologist and author, Professor John Boyages, who has written booklets on the subject of male breast cancer.
This episode covers:
- the shock of diagnosis when Phil had no idea that men even could get breast cancer
- why breast cancer isn’t as common in men
- the role of genetics in the male breast cancer experience
- the impact of a breast cancer diagnosis on male fertility and notions of masculinity
- the experience of treatment and options available to men
- the physical and psychological impact of breast cancer treatment.
- Sign up for the My Journey online tool, which has a range of resources available for men diagnosed with breast cancer, including information on support and treatment specifically for men.
- Visit our Online Network, where you will find a dedicated discussion group for men diagnosed with breast cancer.
Upfront About Breast Cancer is a production of Breast Cancer Network Australia. Our theme music is by the late Tara Simmons, and this episode is proudly brought to you by Dry July.
Want to get in touch? Visit our website at bcna.org.au, email us at firstname.lastname@example.org, or call our Helpline on 1800 500 258
Kellie Curtain [00:00:07] Let's be Upfront about breast cancer in men. It's not as common in males, but each year around one hundred and sixty five men in Australia will be diagnosed with the disease. Because breast cancer is largely seen as a women's cancer, men are less likely to get any abnormalities checked out and are often reluctant or embarrassed to talk about their experience. Joining us on this episode of Upfront is radiation oncologist and breast cancer specialist Professor John Boyages AM, and survivor Phil Purnell, who like many men wasn't even aware he could get breast cancer until he was diagnosed at 63. This episode of Upfront about breast cancer is an unscripted conversation with our guests. The topics that we're going to discuss are not intended to replace medical advice, nor necessarily represent the full spectrum of experience or clinical opinion. So please exercise some self-care when listening to this podcast as the content may be triggering or upsetting for some. Welcome to you, John and Phil. Phil, can you take us back to when you got that initial diagnosis? What was your reaction?
Phil Purnell [00:01:19] My reaction was really one of shock, that I had cancer rather than the location. I guess it was rather strange to have a female cancer or what is normally a woman's cancer.
Kellie Curtain [00:01:38] And you weren't aware that you could actually get breast cancer?
Phil Purnell [00:01:40] No, I wasn't aware I could actually get it, but I was also probably not as impacted as a female would be because the breast is not really as important to the male as just the female, I guess. And I guess it was just shock of the cancer and weirdness that I had breast cancer.
Kellie Curtain [00:02:02] John, it is uncommon for men to get breast cancer. Why is that?
John Boyages [00:02:09] Well, it's in Australia, it's about three men every week. And it's uncommon, I guess, probably because men don't have a lot of breast tissue there. There's some rudimentary tissue. The breast consists of, in a female and male, consists of little lobules, which can produce milk, of course, in the female and then the ducts which carry milk to the nipple. But all these cells are very rudimentary in a male, unless they are stimulated for some reason, perhaps because of radiation that may have got as a child, very rare these days, or perhaps some hormonal reason or perhaps genetics.
Kellie Curtain [00:02:53] OK, so what role does genetics actually play for men? Is it more likely to be a genetic type of breast cancer or like with so many of women diagnosed, it's unlikely that they will actually have a genetic link.
John Boyages [00:03:09] That’s a very good question, Kellie. Probably 15 per cent of men, so that's about just about one in six, have a first degree relative. That is a mother, father, brother, sister, daughter or son with breast cancer. And in one large study where they took blood all men with breast cancer, they found that 12 per cent, that's about one in eight men, had the BRCA-2 mutation, which is the most common gene mutation, and about one per cent had the BRCA-1 mutation. So it's probably more common to be genetic than in females, particularly the breast cancer two gene mutation. And of course, if a man has that mutation, then there's a 50 per cent chance it could be passed on to his children, male and female.
Phil Purnell [00:04:08] And that, can I say, that was one of the things; fearing I might have the BRCA gene was one of the things the oncologists arranged straightaway to have that gene testing done, and because I've got three sisters and a daughter, and the fear was that if I had the BRCA gene, then that was definitely going to impact on the possibility of them having a problem with cancer. So that was a worry as a male.
Kellie Curtain [00:04:38] So you did have the testing, Phil?
Phil Purnell [00:04:39] I had the testing done and turns out I don't have the BRCA gene, which is great. I've agreed to remain in the genetic testing for other possible genes that might be causing cancer. So I've remained as part of the experimental group, if you like, but no, so far I don't have the BRCA gene.
Kellie Curtain [00:05:07] OK, so when you were diagnosed, you had stage two breast cancer. What did that mean for you? What was your treatment?
Phil Purnell [00:05:14] My treatment was to have surgery followed by chemotherapy and radiation and then the hormone drug Tamoxifen, which is a hormone blocker, so it's the same for women. Now, I had the surgery. And that was quite, I guess it was quite... It impacted in a large way, it was quite a large scar that I ended up with.
Kellie Curtain [00:06:01] So, are you saying that it was the physical impact that was great or was it the psychological?
Phil Purnell [00:06:08] The physical and the psychological. In my case, psychological was important because I did have nodes removed and therefore, they had moved from the lump that I found to those, plus luckily or unluckily, a person who's suffered from mental health issues in the past, and so I was on anti-depressants and still am, and I think that helped me get through the mental side of it, the physical side of it, well, yeah, it's quite a quite a large operation. Even with the plastic film they use now in radiotherapy, which is very good, you still get fairly well burnt. But I think also the fact that you have to travel to get that done, if you live in a regional area, as I do, or else stay in a motel somewhere for those several weeks.
Kellie Curtain [00:07:23] So it really encompasses your whole life?
Phil Purnell [00:07:25] It does. It does. It means that every day you've got to go to the hospital. And it's got to be a different time every day because of the way they work things out, so you don't know what time until the day before, it's only a short period of time to have the radiation treatment, but it's a long period of time in getting there and get back. In my case, it was 30 minute travel one way, every day, you know, an hour's travel.
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Kellie Curtain [00:08:08] John, do you find the psychological impact for men is different to women? I mean, we know the physical impact is different because as we've just mentioned, breasts are possibly a lot more important to the woman's entire image. But is there a psychological impact in the fact that it actually is more commonly seen as a women's disease? Does that play a part at all, do you think?
John Boyages [00:08:35] It does in some men and so men aren't good at health stuff at the best of times, you know, women are far better at going to see the doctor and having screening mammograms. Men can be self-conscious. In fact, I was going to ask Phil before I answer that question, you know, you said you found the lump was that lump for a long time or?
Phil Purnell [00:09:02] Well, I don't really know because I had an itch around the area of the nipple for quite a long time. It was worrying me, but I didn't feel anything until one long weekend at the start of this year. And I was reclining, watching TV and I was scratching around the area, I felt this hard lump and it seemed quite large. So I went over to the other side and it was a small lump over there, but nowhere near the size of the one on my right breast. And I thought, oh, what is it? I don't know. I know I'm on medication for a prostate problem and that can cause it. So maybe that's all it is. And in fact, if I hadn't have been for Vicki, my wife, I would not have gone to see the doctor. So that lump probably would have got larger until I noticed it, really noticed it, and probably that would have been too late. So, yes, as a male, I would not have done anything about it. And that was a mistake.
Kellie Curtain [00:10:02] And that must be common, John?
John Boyages [00:10:03] Yeah, that's what I tend to find, that men, number one, you know, will they go to their general practitioner, so some delay themselves, some have delays by the system. Sometimes the imaging comes back as a fatty lump and a biopsy is not done. But it sounds like in Phil's case, he didn't delay too long, Vicki pushed you along. But generally, it seems to be and the research shows there's two types of men in some ways, those who conceal it and really are quite confronted by the scar and it affects them going to the beach or the swimming pool. There's others who, you know, are prepared to talk about it like we're talking about it today. And it can be a source of being teased, 'I didn't realise that occurred in men. That's a female disease. Are you feminine?' You know, there's often connotation with it. And some psychological studies have even found, you know, issues of contested masculinity and then difficulties with interacting with the health services. You know, can the man go in and have a mammogram? And there's obviously all the normal things that men with cancer have to deal with and women with cancer; body image issues, fear of recurrence, fatigue, weight gain, the normal stuff that can happen with chemotherapy and hormone therapy, including loss of interest in sex, for example, and sex drive.
Phil Purnell [00:11:43] I'm sure John, if I've been a young male, I would have been quite devastated. Being elderly, it's not such an issue because we don't get around with my shirt off much, but if I'd been a young male, I would have been deeply embarrassed with this.
Kellie Curtain [00:12:05] And John, is that do you find, it is very much particular to the age that a man is diagnosed? And whilst we know about the possibilities of reconstruction for women, what are the options for men?
John Boyages [00:12:21] In terms of reconstruction?
Kellie Curtain [00:12:24] Yes, so what are the options post-surgery, as with Phil, he had a single mastectomy. He elected not to have reconstruction, what are the options for perhaps younger men that do like to go to the beach and are self-conscious of any disfigurement?
John Boyages [00:12:44] Look, it can be a problem for some men. And like breast cancer in women, some women are fine with the mastectomy and other women are obviously very distressed by it and the physical disability. But there is a feeling that men don't worry about it, they haven't got a breast, but it's not true. And many men, in fact, one study found that 40 per cent of men don't not looking at themselves anymore, after a mastectomy scar. So I think there's some often men are patronised and it's said, you know, you don't have a breast anyway, why are you worried about it? But it is a scar. It is a daily reminder, you know, when you have a shower in the morning, you look at yourself in the mirror, that you've had cancer. So it can bring back recurring thoughts. It can make you worry, difficulty concentrating and so on. What are the options; there have been studies of breast conservation. And that may sound silly, you know, can we conserve the breast in men, but certainly if a man finds a tiny lump and it can be removed just with the lumpectomy, most men have radiotherapy after a mastectomy. So you can still do a lumpectomy and give radiotherapy. And some men, we can avoid doing the armpit operation if we can detect it early enough. Most lumps in men occur around the nipple, around the areola, which is the dark section around the nipple. And if it does feel asymmetrical or abnormal, particularly on one side, or if there's a nipple discharge, then early detection may mean breast conservation, lumpectomy and radiotherapy. Not normally done in Australia, but it can be done. And there have been case reports, in my book, Male Breast Cancer Taking Control, I do have a picture of a man who had a nipple-sparing mastectomy. And this is very common now for women in Australia, where there's onco-plastic breast surgeons who can remove all the inside of the breast and keep the skin and the nipple, and then give radiotherapy to that area. So that that has been done in case reports. And I think as we detect breast cancer earlier in men, it may be an option for Australian men.
Kellie Curtain [00:15:19] I know this isn't relevant for Phil, because you already had a family, but John does treatment affect male fertility, as it does women?
John Boyages [00:15:29] Well, it can do, and the average age of male breast cancer... Phil, how old are you?
Phil Purnell [00:15:40] 63 when I was diagnosed. I'm 64 now.
John Boyages [00:15:43] Yeah. It's generally in the 60s you know, the average age is 69 to 70 for men and about 60 in women. But of course, men have second relationships often, you know, it could be with a younger woman, it could be a first relationship. But of course, when you look at the incidence of male breast cancer, it can occur at a younger age. There have been case reports in the 30s. The youngest man I've seen, he's been in his 40s, but you do read case reports of men in their 30s and even 20s who develop breast cancer. So fertility is an issue, particularly if you're having chemotherapy. And that can cause genetic damage as well in sperm. And you know what the American Society of Clinical Oncology guidelines and they were last updated in 2013 is sperm banking. Cryopreservation is the only established fertility method before chemotherapy starts. And if someone's on Tamoxifen, certainly in women, we say stop it for three months before you try and conceive. And the same would apply in men.
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Kellie Curtain [00:17:24] Phil, could you tell us, you pointed to some of the challenges with just the daily treatment and the whole physical and psychological impact that had on you, did you feel like you were drowning in a sea of pink as a male?
Phil Purnell [00:17:39] Well, no, not really, because I grew up in a family with three sisters and no brothers, so I was drowning in a sea of pink stuff. So, no, not really. But I did find, you know, when I was going for radiation treatment that I was sitting in amongst males and females and the males were all there for prostate cancer, and so I didn't actually tell them what I was having my treatment for.
Kellie Curtain [00:18:11] Was that a conscious decision?
Phil Purnell [00:18:14] Possibly not but it might have been just an unconscious decision. I didn't want to bring it up.
Kellie Curtain [00:18:23] You pointed to that earlier to John, that sometimes a man, you know, rightly or wrongly, gets that feeling that their masculinity is being focused on because they've got breast cancer. And that whole stigma, like you said, could either point to them not getting something checked out, but also possibly not reaching out to talk to others when they need that support.
John Boyages [00:18:52] Yeah and I think that's a good word; stigma, but it does apply to males with other cancers and females with cancer. It's something you're labelled; you're a cancer patient. And so we're getting better at resources for male breast cancer, better awareness, but in the past it was difficult. And, you know, some of the research, I remember when I wrote my book, Male Breast Cancer Taking Control, there was a fascinating study about this. And, you know, the odd man that I had with breast cancer, I thought I was helping them by saying, oh, look, we'll schedule your mammogram appointment at a time when you don't hang around with all these women, you know, and potentially embarrass you, but what I'd read in some of the psychological research is that we were reinforcing the fact that our different and making it potentially worse for them. So I don't know Phil if you had any of those experiences or what, did you have a mammogram and was a bit unusual?
Phil Purnell [00:19:53] No, not that. But I have to admit that there was a breast cancer nurse in Hobart, I live on the North West coast, who gave me a lot of information and contact and provided a lot of support. She provided two things which I would highly recommend to any male or female, and that was a bag to carry the drain, the drain from your surgery in, which you have to carry around for quite a few days after the surgery, up to 10 days, I think. And also a little pillow, which you put under your arm, a specially shaped pillow. And that that was an absolute godsend for travelling back in the car from the hospital and the journey from Hobart back to Devonport, and also in bed at night because it just helped release the pain between the arm and the scar.
Kellie Curtain [00:20:55] What were some of the other challenges you faced?
Phil Purnell [00:20:59] Well, straight after the surgery, the first challenge was when I got home, was having a shower. Now, I could do that, but it was difficult to dry myself for the first few days and also very difficult to dress myself. So I needed the help of my wife there. I did have a community nurse drop in on a regular basis. And I guess they would have dropped it more regularly if I'd been single. You do need help. You need someone to assist you. You need someone to be able to drive you somewhere. And that was another thing driving over to Bernie for the radiation every day, I couldn't do that by myself near the end because I was getting too tired and it was fairly sore as well.
Kellie Curtain [00:21:55] Phil, I imagine that is quite a common male trait; not being willing to ask for help when you actually really need both the emotional support as well as the physical support after major surgery. It's still major surgery, is it not, John?
John Boyages [00:22:16] Yes, of course it is. And radiotherapy is tiring as well, and and I think, you know, that redness, you spoke about, that five weeks of treatment, the daily drive, you get a lot of fatigue.
Phil Purnell [00:22:33] And I have to say, there are a lot of services out there to help you...
Kellie Curtain [00:22:36] Google not being one of them, Phil!
Phil Purnell [00:22:40] But you've got to you've got to contact them. There's a Cancer Council and they provide driver services for people, to take them to treatment, which came a bit of a crash down because of COVID which caused a few hassles in unavailability. And there are, as I said, the community nurse. And there's also access to social welfare people at the hospital; I was given access and help with things like accessing money or disability aids, if you needed a walking stick or something like that.
Kellie Curtain [00:23:30] Is there anything you would do differently? As a word of encouragement or support to someone who might be about to embark on the breast cancer journey?
Phil Purnell [00:23:43] The first thing I'd do differently, I was a little bit laid back, and it was partly because of COVID, I would go to the part that my wife had to go through and get that speed. And also, I would also say that don't be, I mean, I was lucky I had my wife, Vicki, who had gone through cancer, but don't be afraid to get help. Ask people for help. You need someone, even if it's just to talk to someone, you need someone to give you a hand through this process. You can't do it yourself.
Kellie Curtain [00:24:29] John, any recommendations specifically for men?
John Boyages [00:24:33] Look, I think obviously the information from BCNA on male breast cancer is important. I know they used to have their own booklet and they used to give a copy of my book. But I think it's all electronic these days.
Kellie Curtain [00:24:51] But yes, it's on My Journey online tool. But yes, we still have all those fantastic resources. Is there anything specific that you would say to men who are either thinking about, well, obviously you need to be vigilant and don't delay, but once diagnosed?
John Boyages [00:25:13] Look, I think with most situations is breast cancer is not an emergency. So take time to read about your options. The breast cancer didn't happen overnight. It could have taken several years or several months to develop, get the right advice and go slowly and reach out. And the reality is, most of us rely on our family, our partner or wife and friends for support. And we've got nurses and professional staff, your general practitioner, of course, the McGrath breast cancer nurses and specialist team, of course. But, you know, the reality is once that treatment finishes, it's often like the umbilical cord is cut and then you might start getting ups and downs, fear of recurrence, issues of side effects of Tamoxifen and weight gain and so on. And often it's at those times you may need to reach out for other help, it might be the nurses, might be psychologists. It could be changing your goals and direction in life. It could be mindfulness and making sure you continue to have a good diet exercise and going for your regular checks.
Phil Purnell [00:26:37] I'd agree with that. Get on with life. I was lucky in that I had a good surgeon who I'm still in contact with and who's overseeing everything, wasn't the actual surgeon who did the operation. But my original surgeon. So normal routine is very important even after the operation to try and get back into walking, doing a bit of exercise. I'm now seeing a physiotherapist because of possible lymphoedema and she's given me also strengthening exercises to do for the area. So these are all things that can help you and keep in contact with your doctors.
Kellie Curtain [00:27:25] Yeah, good advice. Thank you both for being Upfront with us today about men and breast cancer, an episode produced with thanks to Dry July. If you or someone you know would like some more information, BCNA has many resources available. Head to the website BCNA dot org dot au or download the My Journey online tool or call our Helpline. As always, the opinions of our guests are welcome, but not necessarily shared by BCNA. For any individual concerns, it's always best to contact your health professional. I'm Kellie Curtain, it's good to be Upfront with you.