Talk About Cancer

A splash of blue in pink

• Episode 21

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Rod shared his experience as a male breast cancer patient and how that experience led him to become an advocate and create a resource site to serve the needs of the male breast cancer community.

You can find Rod on Twitter or at his website http://malebc.org/.

Please follow the podcast if you are enjoying the show. Would also be awesome if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.

Have topic suggestions or feedback about the show?  Contact me on Instagram or email me at talkaboutcancerpodcast@gmail.com. 

Thank you for listening!

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My reflections on the episode:

I’m super appreciative of Rod coming on the show to share his experience as a male breast cancer survivor and advocate. I learned so much - from how the lack of awareness about male breast cancer results in more delayed and therefore more dire diagnosis, to the differences in how men seek support online. It was also very interesting to hear about the advocacy work he has been doing with the “pink” cancer organizations. 

I was glad to hear that Rod did feel supported by women in online forums and that he felt well taken care of by the female experts on his medical team. Since men account for such a small percentage of the newly diagnosed population each year, I expected Rod to run into more problems, and was slightly surprised to hear otherwise. I feel like I’ve heard more problems for women breast cancer survivors than in his experience. I don’t know if Rod was being polite or if that was really the case, but my guess is that women as a marginalized group are able to better empathize with the men when the dynamic is reversed. That’s definitely my bias as a woman but I don’t think my hypothesis is too far-fetched. 

SPEAKER_00:

Hey everybody, welcome to episode 21 of the Talk About Cancer Podcast. This is Serena, your host for the podcast. Don't forget to take a moment to hit that follow button on the podcast player if you're enjoying the show. It will also be really helpful if you can leave an honest rating and review so I know how to continue to make this better for you. In today's episode, Rod shared his experience as a male breast cancer patient and how that experience led him to become an advocate and create a resource site to serve the needs of the male breast cancer community. Let's dive into his story now and I will check back in with you at the end. Welcome to the Talk About Cancer Podcast. Let's start with a quick intro and have you tell us a little bit about yourself, who you are, where you're from, and anything else you would like to share with our listeners.

SPEAKER_01:

Hi there, Serena. Um, I'm Rod Ritchie, born in Sydney, Australia, in 1950. Um I was an internet publisher and writer, and more recently a breast cancer activist. I was diagnosed in March 2014 with stage 3b vasive breast cancer. Two years later, I was diagnosed with prostate cancer. So currently, fortunately, there's no evidence of either disease, and I'm pretty active in the breast cancer community mainly, and I'm on Twitter with the hashtag malefitness.

SPEAKER_00:

Thanks very much for that intro. Could we actually go back to the beginning, starting with how did you discover that you had breast cancer?

SPEAKER_01:

Okay. I discovered I had breast cancer by noticing a lump in my left breast below the nipple. And I thought, oh, this is not good. Um, my mum died young of breast cancer, so I was vaguely aware that there's hereditary element to it, but I really wasn't tuned into a guy having breast cancer, but I thought, okay, off to the general practitioner. So she sort of looked at me and thought, I don't know, he's just he's just coming here for nothing. So I went away. I came back a month later because the lump was getting larger, and um, for some reason I let her talk me out of it again. So another month later, I turned up and I said, Look, I want to scan, you know, there's something, there's something there. She said, Okay, okay, okay. And there was no clinical examination. If I was a woman, I would have been immediately checked. And by that time, I tell you, it was an inflamed breast, it was inflammatory and looked pretty nasty. So she sent me off to the oncologist. Um, and the oncologist who normally would have sent me to a breast cancer surgeon said there's no way the breast cancer surgeon will do any operation, so um, I'm going to start you on chemo. So that was the beginning of treatment.

SPEAKER_00:

Can you clarify why the oncologists say that there's no way that the surgeon would have operated?

SPEAKER_01:

Because with inflammatory breast cancer, you have um damaged skin, and the operation is a much more complex operation, and it's called neo-adjuvant treatment, where you're starting with chemo, whereas adjuvant treatment goes surgery, chemo, and then radiation if you need radiation. So that was the reason.

SPEAKER_00:

How did you feel when your physician was kind of like, this is not a big deal? How did you push through that?

SPEAKER_01:

Well, like most guys, I was thinking, great, it's nothing with no scientific evidence. And um, it's amazing how you'll take any explanation, but uh I was persistent because actually there was something growing there. So I thought I better keep on the case. And as I told you, the third time I got lucky, I got a um ultrasound, and um the technician's eyes lit up when she saw saw the cancer. It was was around the breast that was in the lymph nodes, and she sent for um a doctor to come and check it out. And of course, um he said immediately we need a biopsy, and then the biopsy showed that cancer was there.

SPEAKER_00:

How did your family or your friends react to the news that you had breast cancer?

SPEAKER_01:

I think they were a little bit surprised. Um, and it really wasn't on anybody's radar, although, as I explained before, uh my mum had it, and um, perhaps I should have been a bit more aware. But um, shock and um empathy, and in my um explanation to them, I said this is treatable, this is doable, and um I'll go through the treatment.

SPEAKER_00:

Was there anything that was challenging in your treatment process because you were a male patient?

SPEAKER_01:

Okay, well, as you can imagine, the system's geared towards women. So I train up for chemo. There's usually a pink gown involved. Um, okay, pink gown, pink's alright. I've already told you I prefer blue. But um with the chemo, it's really quite straightforward. You're sitting in a chair and you're receiving the same drugs the women around you are receiving. And um terrific nurses, and in that particular instance, um, I was a guy, you know, and maybe some of them didn't know that I what I was there for, some of the other patients, but um I was very happy to be, you know, to get that going, because that's really the first thing in a cancer patient's mind is the actual trauma of treatment, but also the fact that it might make you better.

SPEAKER_00:

And did you have someone who helped to care for you during that time period?

SPEAKER_01:

Yes, I did. Fortunately, Julia, my partner, was a great help. And um, there's lots of ways you need to be carted around and um looked after when you come back when you flop in the in the sofa. And um, she was there um all the way, actually. It was great. It was great to have that support. In fact, I couldn't imagine being any other way.

SPEAKER_00:

And did you seek out support in other ways?

SPEAKER_01:

Yes, absolutely. Dr. Google was a great help. So um because I didn't know anybody um that had the disease as a man, I was busy researching away, and I came across um a really good um forum called breastcancer.org and jumped on there. There was a couple of other men that were I was able to talk to. Um, and in the last couple of years, there's Facebook pages, and um there's a male breast cancer coalition who I do some work for. So there is a support network out there, much more so than people tell me um, say 10 years ago. Um so um, yep, plenty of assistance out there, especially the internet.

SPEAKER_00:

Yes, internet has become a big support for the cancer community, definitely. And I I think especially during COVID and quarantine, where you can't, you know, physically go into groups or even just see family and friends. That's definitely been a lifeline for many people.

SPEAKER_01:

Yes, through COVID, telemedicine, not just the internet, the checking up things, but you see your doctor online, and um, I think that's a trend that'll continue in the future.

SPEAKER_00:

Absolutely. It makes a lot of sense. It's convenient. I don't know why we didn't do that earlier, to be honest. And so when you found the other male breast cancer survivors on the online forum, what did you guys talk about?

SPEAKER_01:

Well, um, guys have a different way of approaching illness. Uh I don't know, I wouldn't say we're more practical, but we're we're less likely to seek each other out. In fact, I have to say there were very few men on that forum, even though the statistics in the US alone, there's 2,600 men diagnosed each year. You would expect, I don't know, 10% of them to be there, or 5% or something, but really there was only two or three people at any one time on this major forum, which if you searched your Google, you know, it came up the top for male breast cancer. So um we we talked about mainly treatment because at the beginning I was in treatment, and um, as I came through treatment, um other people came on wanting to know about treatment, wanting to know about how you might help yourself um heal through the different treatments. The surgery is quite invasive, as you understand, and um radiation burns your skin, kinot sends your nuts, you know, all these things were great um talking points, and we talked.

SPEAKER_00:

So it was lots of just medical information sharing. How did you do this? How did that go for you? I know when I used to be on those forums, there was a lot of discussions about, you know, how do you deal with the different types of side effects.

SPEAKER_01:

Yes, definitely talk about how to solve problems with side effects. Um and it seemed to me it was pretty utilitarian talk. There wasn't a lot of emotional discussion, I have to say. Um, although when you come to um know patients who have progressed to stage four, I think things changed there. And um, those people really do have more of a problem, and they also want to talk about a wide range of problems and you know mental problems as well as emotional problems.

SPEAKER_00:

Were people able to show up for them when there were requests for help? I know that on those types of forms, which I think is really the value of this, people would just drop in and say, I'm just having a really bad day. Right? There's nothing really different that happened today, but I'm just really down today. It's nice then to see 50 responses that says, I get you, or I've been there, you know, you're not alone. So do you feel like the men on the forum were able to show up for each other in that way when people were to your point at stage four and are having a harder time?

SPEAKER_01:

Yes, I think there's a lot of empathy towards stage four patients. And with the advent of Facebook and and the like button, you know, you can immediately get a reaction. I think with the older forums, might take a couple of days, and by that time you might might feel wasn't quite you weren't feeling as bad as you were a couple of days ago. So that's the beauty of um social media now. I think there's there's instant feedback and yes, some support for patients that really do need support. And I'm sure um I'm and I'm not stage four, but I um I have a lot of friends who are in stage four who have passed from the disease, and I'm well aware of the range of emotions that uh they go through.

SPEAKER_00:

It sounds like to me for the men-specific forums, they generally serve the same purpose, and you probably talk about the same thing, but it's nice to just have a forum with other men, even though you know maybe the disease and the way it presents itself isn't necessarily different for men and women. Would you say that's true in your experience?

SPEAKER_01:

I think that's true. And the forum from the point of view of the patient means there's always somebody. And it's not, I have to quickly add here, it's not all men supporting men, it's women supporting men and men supporting women. And I think um the fact that you know that it's there, like I live in a rural area, so I'm not in touch, you know, it's not I'm not going to an office or something and and getting, I don't know, chat chit-chat there. So I I think you're right. I would never underestimate the value of the forums and even Facebook groups.

SPEAKER_00:

So it's it's a mixed forum, but you were able to find other male breast cancer patients, is what you're saying.

SPEAKER_01:

Yeah, I was able to find other, yep, I was.

SPEAKER_00:

Whereas like locally, you're like, I don't know who else to talk to about my experience.

SPEAKER_01:

No, I I've never met anybody. I've never met anybody in seven years.

SPEAKER_00:

It's not a totally uncommon thing, but somehow there just aren't that many men who are on those forums.

SPEAKER_01:

I'm saying the number of men that get on for the number of cases is proportionally much lower than for women, I would suggest. Um I don't have the statistics, but um, admittedly, because there aren't many men, not many men get on. But um with women, there's always hundreds of women there talking about different topics, whereas the male section of the perhaps a forum, for instance, a man will come on, then might see him next week. You know, it's like they seem to be um oh, I just say loath to unload themselves emotionally. That's what I'd suggest that. But um, if they do have a problem, they're quick to get on and try and solve practical things.

SPEAKER_00:

Interesting. So you've you were diagnosed in 2014, you went through treatment and NED and then quick follow, then in 16, you then were diagnosed with prostate cancer. How did I make you feel the second time around? Was it harder? Because it's like, dang it, I thought I I'm done, and then here it is again.

SPEAKER_01:

Yes, look, it's not uncommon um for men with breast cancer, you get prostate cancer, and then with prostate cancer you get breast cancer. Obviously, if there's a genetic element there, and there was with me. Um, in women, it's breast cancer and ovarian cancer go together. Um, so anyway, so I get diagnosed with prostate cancer and it's almost like you know WTF, but um we managed to treat that a bit easier, I have to say, I have to say, and because I'm not so active in the prostate cancer community on forums and things, because I I seem to think it's nothing as serious as breast cancer, and my breast cancer was more aggressive, but um the prostate cancer was treated in a more timely fashion, and uh this is a prostatectomy, so there's not many guys around that have had a mastectomy and a prostatectomy. It's quite um I feel quite unique, but um I just take that as another another badge to wear.

SPEAKER_00:

Thank you for letting me know that I didn't know that those are actually linked for men, prostate and breast cancer.

SPEAKER_01:

Yes, they are, especially in the in the setting of hereditary in the genetics, the BRACA genes you're probably aware of. Um they just go together, and there's many examples of women and breast cancer, ovarian cancer, and then the men, as I said, with breast and prostate cancer.

SPEAKER_00:

How did you then go from being a patient to being an advocate?

SPEAKER_01:

Oh, good question. I think um those cancers coincided with the time when I was looking to step back from my work in IT and as writer and an editor and book publisher, magazine publisher. So I came into it with quite a few skills that a patient advocate needs, and that is good communication skills, ability to explain yourself, to ask other people questions. And I evolved pretty quickly, and I thought, mainly because I couldn't see men getting necessarily as good a treatment or as timely treatment, and I thought I really want to go to um the breast cancer charities and tell them to improve their game. And in fact, um, the one here in Australia that I did deal with immediately turned around their website to de-gender. It's not just women, they were there now, let's say women and men, and they have a special section for men and part of the forum, they're trying to encourage men to come there. So it was quite rewarding to have that response, and I think nobody would disagree with it. And with a friend Rob, who's now sadly departed, we worked our manifesto for men with breast cancer, and we said we wanted to build a sense of importance and belonging within the cancer support groups for male breast cancer patients and their caregivers. We wanted to provide easy access to relevant and up-to-date information for men that is prominently displayed and accessible by all groups. We wanted to institute cancer research to a better standard of inclusion for men. I mean, we're only 1% of new diagnosis, we're hardly a feature on the research radar. Um, we also wanted to cut down the pink and have some blue on the pink. We don't want to have blue things, but if you're going to keep pink, you know, just put a little dot of blue on it or something like that, and people say, Oh, what's that all about? Oh, that's because men have breast cancer. And we wanted some publicity in October, which is breast cancer month, publicity for guys. And finally, we thought with the men that have a genetic predisposition, there's no scanning program for them to go into. So we wanted more inclusion in um scanning programs, and perhaps the people with um I say people, men and women with a genetic predisposition get regular scans at a younger age than say 50, when that might start with women.

SPEAKER_00:

That's pretty amazing to get that kind of response, right? You're not the first one, so why did it take until you to really think about changing that message and being more inclusive? But as I was listening to you say that though, if you were to advocate for more inclusion, and I get it in terms of the screening up front, but from a support system perspective, do you think it would make sense to have men specific support network? It was bringing me back to the picture on your Twitter account. And I want you to share a little bit about what is the backstory of that. Um, because I think there's unique needs there for men, you know, who are dealing with this disease because it in some ways has already been branded as a woman's disease. So, you know, in your opinion, based on your experience, what makes sense?

SPEAKER_01:

Okay, well, the picture you saw were guys lined up at the annual conference of the male breast cancer coalition, which is based in um based in the United States and um has a pretty active following on Twitter, but also a big Facebook page. We find people that are diagnosed and try and help them. Um if they want to share their stories. I'm the editor. I've probably edited a hundred stories of men with breast cancer. So most of those guys I know, and there they are lined up with their shirts off, with hemastectomy scars. That is a great picture, and um, it's quite a powerful picture. So that's um that's really just part of the campaign to make general awareness about men and breast cancer.

SPEAKER_00:

And your thoughts on do you think there needs to be a specific support system from men because the disease kind of has been branded more as a women's disease?

SPEAKER_01:

Okay, that's another good question because breast cancer for women is different. In because of the breast, there's a like a sexual part of their body and a part of the body that they nurture children. I think there's a lot more intimate discussion that needs to go on between women. And I found when I went on the initial um breast cancer.org forum, I soon found that I needed to step back from where there weren't men needing any help, in my opinion, could just close down a um a whole thread. So so I quickly got out of that and just concentrated on the men. And so I do understand the difference between um men and women with breast cancer uh for those very reasons. And I think um I think I'd like to see men included in the message from these charities. I call them the pink charities. I'd like to see the pink charities say, look, there's only one percent of new diagnosis of men, but you know, when you're a man with it, you're just the same, you've got you know, just as much problem as as women have. But I think the reason that men don't come forward, and and really I told you before, they're very loath to present themselves in a public forum, even in community. They maybe tell their partners, obviously, and maybe not even mention it at work. And and there's this there's a group of men that call themselves chest cancer patients.

SPEAKER_00:

Interesting.

SPEAKER_01:

Which is not really a uh cancer, you know, there's sort of subsets of that, maybe some sort of lung cancer. But some of these men have come back and said, Look, I when I first got it, I call it chest cancer, and now I understand it's breast cancer, and unless we call it breast cancer, we'll never get any funding, we'll never get any recognition. There's a huge network out there for women and breast cancer. We're better to be part of that network because there is research and we can advocate within that disease for research on men. And in fact, um in the United States, the FDA has just announced that they'd like all people doing research and studies, where possible, to include men. You know, it might be that you don't get enough of them to make um meaningful um statistics, but over time we'll gather uh enough information to maybe put that together. And um, it's very heartening for men to see that they're getting included in research. I mean, we're just treated in the same way as women, which is fine. All the drugs are developed for women and they transfer over to men. There's there's even discussion on is male breast cancer sort of clinically different, or it's clinically different, but scientifically and medically different. So there's a lot of discussion going on. There's much more research now. I turn up at conferences like the San Antonio Breast Cancer Symposium and push my message, and there's other men there as well. And I was fortunate I was sent to the LEED course, which is run by National Breast Cancer Coalition in the States, and that's predominantly women, and they're a very active group, politically active, but they get patients together in a new lot every year, maybe 30 or 40 people, and they give them some scientific training. And by understanding the disease and by um being aware of the differences between men and women, I think um I've come in there at a bit of a slot, and I have to say it was much easier um at the beginning to get awareness because I was going from zero. Now it was a bit of a plateau out there, and I'm going back to the pink charities and saying, hey, come on, don't forget what we said a few years ago. And I go, Oh, okay, yeah.

SPEAKER_00:

Thank you for actually calling that out very clearly for me. That was definitely an aha moment in terms of sure, it's very similar disease-wise, but the body part itself has different meanings than the support that has to come from it actually needs to be different. So thank you for calling that. That's that's very astute. Most of the time when I talk to my guests, I focus so much on like the personal experience that oftentimes I'm not really thinking about more like the advocacy level and the awareness and the messaging and what all of that means. And and you just reminded me of how complex all of that can be at that organizational level in terms of research and funding and how that ties into the strategy that you have for messaging. It's all very enlightening and interesting. Thank you for sharing that.

SPEAKER_01:

No problem.

SPEAKER_00:

And I know you also have you have a website as well, right?

SPEAKER_01:

Yes, I put up a website because I I know how to do websites. So mailbc.org, so m-a-le-bc.org. I've tried to put a lot of information there for people that might want to start somewhere, and and it includes the um all the treatments, um, the diagnosis, the different types of cancer. It also talks about how to deal with the disease of a man and have men's experiences. I put the Twitter feed on there. I've got a page of scientific articles that relate to any research on men with breast cancer. So I've tried to make it a bit of a depot for information and for new information. And um websites have lost a little bit of their traction, and people tend to sort of want to go to, or particularly Facebook, but um as a repository of information, I think it's it's well worthwhile. And so I keep that going.

SPEAKER_00:

Wonderful resource. I took a look at it earlier, so thank you for doing that for the community. What would you say to someone who gets diagnosed with breast cancer today? A male, a male patient who just is newly diagnosed?

SPEAKER_01:

Yeah, I'd say um it's rare, but it's there, you've got it. Don't freak out. Try and um get the best attention possible. Um, ask around for the right people to see in your area, the best people to see, because I think having quality treatment is a huge part of your process towards recovery and the chance of uh lesser recurrence. And I had a great team. I'm admittedly, the general physician maybe missed the initial diagnosis by a couple of months, but um, the surgeon, um, another woman, she was fantastic. The oncologist was a woman, radiation specialist was a woman. There's people women out there helping women, and they're just as happy to help men. So just go for it. You know, find the best people regardless of gender and get um a treatment plan, make sure you know you're happy with it. Um, talk to your friends and family. I think if possible, and not everyone really wants to do this, but be as open as possible because you're sort of outsourcing the drama of it to some extent. And um what's wrong with that? I'd just like to say um to the women, um, thank you for helping us, and um to the men, you know, we've got a lot of support out there. Um, our breast cancer sisters and there's breast cancer brothers, and I think um we're all in the same boat, and everybody work together, help each other, and you know, hopefully get through it.

SPEAKER_00:

Awesome. And I'll put all of the links to your website and your Twitter account and wherever else you are in my show notes. Thank you so much for taking the time to share your story with us today, Rod.

SPEAKER_01:

Thank you, Serena.

SPEAKER_00:

I'm super appreciative of Rod coming on the show to share his experience as a male breast cancer survivor and advocate. I learned so much from our conversation, from how the lack of awareness about male breast cancer results in more delayed and therefore more dire diagnoses, to the differences in how men seek support online. It was also very interesting to hear about the advocacy work he has been doing with the pink cancer organizations. I was glad to hear that Ra did feel supported by women in online forums and that he felt well taken care of by the female experts on his medical team. Since men account for such a small percentage of the newly diagnosed population each year, I expected Ra to run into more problems and was slightly surprised to hear otherwise. I feel like I've heard more problems for women breast cancer survivors than in his experience. I don't know if Ra was just being polite or if that was really the case, but my guess is that women as a marginalized group are able to empathize with men when the dynamic is reversed. That's definitely my bias as a woman, but I don't think my hypothesis is too far-fetched. That's a wrap for today. Please follow the podcast if you would like to hear more stories from cancer survivors, caregivers, and family members. I would really appreciate it if you can leave an honest rating and review in Apple Podcasts or Podchaser so I know if I'm serving the interests and needs of you listeners out there. You can also share any feedback and suggestions directly to me by visiting talkabout cancer podcast.com. Thank you for listening.