I Need Blue
I turned around to see a masked man pointing a gun at me. It was just the beginning of a series of events, including robbery and abduction, which changed my life forever. I Need Blue, hosted by Jen Lee, is a podcast series featuring lived-experiences from survivors of life events. I NEED BLUE creates space for survivors of trauma to feel they BELONG, are LOVED, UNDERSTOOD and EMPOWERED! I called 9-1-1 and they provided me with life-saving directions to help my customer who was having a medical emergency. Law enforcement rescued us and caught the robber. Our first-responders face unique traumas every day. I NEED BLUE provides space for them too!
I Need Blue
Ron: From Male Breast Cancer Survivor (Twice) Powerful Advocate
Ron Rapaport's journey from a pharmacy career to surviving male breast cancer twice is a powerful story of resilience. After retiring in 2016, he discovered a retracted nipple while on a trip to Spain in late 2018. Initially dismissing it, he later sought medical attention and, in early 2019, was diagnosed with breast cancer. Following surgery and treatment, Ron’s life was changed, and he became a strong advocate for male breast cancer awareness, educating others about this rare condition.
Through his advocacy work with MaleBreastCancerHappens.org, Ron raises awareness about the need for early detection and self-exams, emphasizing the importance of being proactive about one’s health. By sharing his story and challenging the stigma around male breast cancer, Ron has become a voice for others facing the disease, inspiring men to take charge of their health and seek support when needed.
Connect with Ron:
Podcast Website: https://itsawrapwithrap.com
Podcast Email: itsawrapwithrap@gmail.com
Podcast YouTube channel: ITS A WRAP WITH RAP-THE PODCAST UNCUT
Connect with Jen:
I Need Blue now has a new home at The Healing in Sharing! Visit thehealinginsharing.com to explore Round Chair Conversations, all relevant I Need Blue content, and ways to support the mission of sharing stories that inspire hope and resilience.
By sharing the hidden lines of our stories, we remind each other we are not alone — together, we step out of hiding and into healing.
Instagram: @ineedbluepodcast
YouTube: https://www.youtube.com/@ineedblue
Apple Podcasts: Listen & Subscribe
YouTube: https://www.youtube.com/@TheHealingInSharing11
Memoir: Why I Survived, by Jennifer Lee on Amazon
The background music is written, performed and produced exclusively by Char Good.
https://chargood.com/home
Everyone has a story. They just don't always have a place to share it. Welcome to I Need Blue, the podcast about to take you on an extraordinary journey where profound narratives come to life, one captivating episode at a time. I'm your host, jennifer Lee, and I founded this podcast because I know there is healing and sharing. Each story you will hear shared on this podcast is a testament to our collective strength, innate ability to transform in the incredible power of healing. Please remember you are never alone. Please visit and share my website with those seeking connection and inspiration wwwineedbluenet. Thank you, char Good, for composing and performing the introduction medley for I Need Blue. You can find information about Char on her website, wwwchargoodcom.
Speaker 1:Before starting today's episode, I must provide a trigger warning. I Need Blue features graphic themes including, but not limited to, violence, abuse and murder, and may not be suitable for all listeners. Please take care of yourself and don't hesitate to ask for help if you need it. Now let's get started with today's story. Ron Rapoport is a two-time male breast cancer survivor, current lymphedema thriver, traumatic brain injury survivor and global lead advocate for malebreastcancerhappensorg. Ron also hosts his own podcast. It's a Wrap with Wrap and can be found on all major podcast platforms. The links to contact Ron listen to his podcast will be in the show notes. Ron, thank you for being my guest today and welcome to the I Need Blue podcast.
Speaker 2:Well, thank you so much, Janet. It's a pleasure to be with you.
Speaker 1:I'm really excited for you to come and share male breast cancer. It's a topic that I have not covered before, so tell my audience a little bit about yourself.
Speaker 2:I spent most of my career in the medical field, in the pharmacy field, and I retired in 2016 from that. In 2018, late 2018, life kind of changed a lot for me. I was tired and traveling and this and that, having a good time, and I was in Spain. I was going to dip myself into the ocean there and I took my shirt off and I noticed that my left nipple was retracting and I thought, oh well, you know, it's probably nothing, because I think I hit my chest on a car door a while back, so it's probably healing. That was late 2018 and early 2019.
Speaker 2:In January it was getting more pronounced. In January it was getting more pronounced and I thought, well, I knew male breast cancer existed, but it was never on my radar and it's so rare. The chances of getting it are one in 833. And at that time it was even one in 1000. I did show it to my wife and my wife goes immediately. She goes you need to get a mammogram. And I said, okay, I saw the doctor and we went down to a large medical complex here and they did a mammogram. And then they said well, we can't tell anything from the mammogram. They said we'll do an ultrasound. So they did an ultrasound. They didn't know what it was, so they thought maybe it was calcification, whatever, and then they gave me a biopsy. That would be the definitive thing.
Speaker 2:A couple of days later got a call in the morning from my doctor and he said yeah, I got the preliminary report. It is a breast cancer. You have breast cancer and of course, from there everything changed Immediately, was very devastated and I was thinking you know, bald headed, emaciated, you know the thing that comes to your mind with cancer. I had worked around cancer patients in the past, but never a lot. And you know, when it happens to you, it's just a whole different ballgame. You're kind of devastated. Yeah, that's where the story begins that I wanted to talk about with Jen today.
Speaker 1:Wow, that's where the story begins that I wanted to talk about with Jen today. Wow, you know. Let me ask you this before we continue on.
Speaker 2:What was it like sharing that news with your wife? It was, it went okay. I mean she, when she was in there with me getting the not the biopsy but the ultrasound. They didn't know what was going on. She was pretty shaken up and I just consoled her and then we kind of knew that you know, the news could be bad. When I came back, you know I told her and you know we both just both said okay, let's go from here and let's figure it out.
Speaker 1:So for you all, you just kind of had to dig in and yeah, we dug in. Yeah, and I'm glad that you had each other dig in.
Speaker 2:Yeah, we dug in. Yeah, and I'm glad that you had each other. Yeah, exactly. Yeah, you know some men don't have it and that's where that blue dot and a sea of pink comes in, because the chances are, you know one out of 850 for men, but it's one out of eight for women, so it's so much more. You know a hundred times more and everything is in pink for women. And and when you go and get your biopsy and things like that for a man it's so rare. I went down to the first time and they gave me a white wristband, you know, to show them the patient. They call my last name. I went up there and they said, oh, no, no, no, we need your wife. I showed him the white band and, oh, you're the patient. Okay, well, take a seat. We're gonna have to figure out where we're gonna put you.
Speaker 2:You know, right away, you're kind of like an outsider in this whole thing. A lot of men think they have a women's disease. You know there's a stigma to this. There shouldn't be. I mean, a lump is a lump, it doesn't matter. We all have breast tissue, men and women, and you know it shouldn't be a stigma to it. But a lot of men slough it off and they don't even know Jen, they don't even know that breast cancer exists.
Speaker 2:I advocate quite strongly for it with malebreastcancerhappensorg. When I have people coming over to the house house to do jobs or whatever, or fix things they're usually young men and at the end of their job I'll stop them and I'll say hey, I just want to give you some information. I've had this. I just want to make you aware of it. Have you ever heard of male breast cancer? And they look at me like, no, what are you talking about? Men don't get that. So then I educate them and they're very thankful and I tell them pass it on to their wives and their family members and their friends, because people don't know that this even exists.
Speaker 1:That's beautiful, how you continue to advocate with people you come in touch with every day, who come into your home and through your podcasts and everything else.
Speaker 2:We even have t-shirts that we wear and I've been in line at a fast food restaurant and stuff like that and people look at the t-shirt and they go come on, is that a joke? And then I show them the scar and they go oh, it's not a joke. And I tell them I'm a survivor. When you mention that word survivor, for some reason everybody just stops in their tracks and they listen to you. They really do so it's quite interesting yeah.
Speaker 1:Now, what is the typical age range that a man would get breast cancer?
Speaker 2:Well, you know, that's interesting. I got it in my early 70s and it was considered an old man's disease. Actually Not anymore. We have men in our group that are in their 20s, 30s, 40s, 50s. It runs the gamut. And, to be honest with you, we're based in Kansas City, missouri, and our founder is Brett Miller, and his mother, peggy, is another co-founder of the group. Brett got male breast cancer, unbeknownst to him at age 17. It's the youngest one on record. They misdiagnosed it for seven years on record. They misdiagnosed it for seven years and finally they diagnosed it correctly seven years later, and they thought when they open him up he's going to be a goner. And fortunately it was contained and it didn't spread. So yeah, it runs the gamut no longer an old man's disease or anything like that. It just it could be any age.
Speaker 1:And the number of men diagnosed, as you shared earlier, is increasing. Why do you think that is?
Speaker 2:2,500 men a year get it. In the United States we lose about 500 men a year to the disease, mostly because it's diagnosed late. Men wait, they don't know it exists or they slough it off and by the time they get in there, a lot of them are at stage four. Now why is it increasing? I believe well, number one there was a huge increase in the Marines at Camp Lejeune. The water was tainted, so we have a big spike from that, and we also have a big spike in the Northeast from the 9-11 fallout all that toxic stuff in the air. I just think a lot of it's environmental. I believe One in five men who get male breast cancer have somebody in their family who has some sort of cancer.
Speaker 2:It could be ovarian or it could be breast cancer, but, yeah, any type of cancer in the family. A lot of it's genetic. And then a lot of men are higher estrogen levels in their body and some of that could be attributed to the foods we eat. Soy contributes to an increase in estrogen and things of that could be attributed to, you know, the foods we eat. Soy, uh, contributes to an increase in estrogen and things like that thank you for sharing that sure I'd like to pivot back to you now okay so you have this diagnosis.
Speaker 1:What happens next?
Speaker 2:Okay. So what happened next was I caught it early. It was stage one. We went for our medical interviews and things like that and they did what they call an alcohol-type test on the tumor and they found it to be a very low value. Which means, if it's a real low value, they did a mastectomy on me on the left breast. I didn't opt for the right breast, I didn't do a double mastectomy. They said we're going to do a mastectomy. When they took the tumor out, they did a test on it and it came back real low. So they said we don't need to do chemo, we don't need to do radiation. So they did that and when I left the hospital, the doctor said to me in 2019, ron, we got it out, you're going to die, but you're not going to die of this. I said okay, great, have a nice day. Well, three years later to the day, it came back.
Speaker 1:To the day.
Speaker 2:Yeah, just about yeah, it was January of 2022. I went in for my checkup and I had been checking my breasts and everything breasts and everything the oncologist found like a lump under my arm that I hadn't seen and I hadn't felt. And she said I don't like the way this feels, I want you to go in for a biopsy. So I went in for the biopsy and, sure enough, it was cancer again and probably it was related to the first breast cancer. So this was a different ballgame altogether. They had to do what they call an axillary dissection, where they take the lymph nodes out from under your arm that have cancer. They did that. I think they took out 10, 11 lymph nodes. After that they did chemo. I had four chemo treatments and 35 radiation treatments.
Speaker 2:Now she told me that when they do the axillary dissection, there is a chance you're going to get lymphedema, and lymphedema is where they're taking out lymph nodes and your lymph fluid is backing up on you and causing swelling. And it can happen in your legs if you have abdominal surgery, that type of thing, and it can happen in your arm and sure enough, it happened to me. And so I've been dealing with that since 2022 with a lot of physical therapy. Right now I'm almost at the tail end. I have to wear a sleeve but they're weaning me off the sleeve because my arm is almost normal. But it's a long process to go through. It was complicated for me because I had to go through radiation and the radiation makes the lymphedema even worse. But I had to have the radiation. And then the thing about cancer is a lot of people may not know is you're always taking preventative medications, anti-hormone medication and things like that, and that causes a lot of side effects.
Speaker 2:Some of that led to a couple of falls for me where I completely passed out, Actually, where I got my traumatic brain injury, where I suffered a subdural hematoma of my brain and I didn't even know it. It came up like four or five months later after I fell. I was acting really strange and I was shuffling along and my memory was starting to go and I had an MRI on my brain and they said they called me up like right after the MRI and they said you need to get to an emergency room immediately because you have a subdural hematoma, You're bleeding from your brain and it's causing a lot of pressure on your skull. If you don't have emergency surgery. You're not going to make it. So we ran down to the hospital and, yeah, the next morning they did a surgery on me and they drained the blood and, fortunately, everything was good after that. I didn't suffer any post problems like a lot of people do, but I was fortunate.
Speaker 1:So you are lucky to be alive.
Speaker 2:Oh yeah.
Speaker 1:Yeah, yeah. I have a curiosity question Looking back through all of the treatments the hormone treatment, the chemotherapy, the radiation and all of the side effects would you have done anything different?
Speaker 2:Well, you know it's a good question. I mean, there are people out there that espouse to holistic medicine where they say you know, I'm not going to do the chemo, I'm not going to do the radiation, I'm afraid they're going to do more harm than good. And it's an individual thing. I was brought up in a system where I was in the medical field and I worked with pharmaceuticals and I have a high respect for medicine. But I do understand people who are afraid of taking that stuff and so you have to weigh it. Everybody individually has to weigh it.
Speaker 2:And the way I looked at it was well, if I do everything they tell me to do and take everything that the science says is going to help me, I think I'm going to go that route, because if I don't do it the way the science is saying to do it and it does come back, or it gets worse or it never gets better, or it kills me, you know, on the verge of dying, then I'm going to always say to myself, well, maybe I should have done it. There's no right or wrong, it's just. I think it's an individual thing and that's the way I approached it. And I'm still taking the antihormone medication I did get off of one a couple months ago and I feel a lot better. It wasn't an antihormone, it was something else that kills cancer cells.
Speaker 2:But yeah, there is side effects to it and there's times that you question yourself, you know, is this really worth it? You know I'm going through a lot of problems. You just have to forge ahead and you have to say well, you know I'm going to go with what I thought was the right thing to do, and if it works out, great. And if it doesn't, well, it doesn't.
Speaker 1:Right. It was the choice you made right.
Speaker 2:Right.
Speaker 1:Yeah, so six years later, how do you feel? Are the side effects manageable now at this point? Do you have checkups? How are you?
Speaker 2:I have checkups. I go every month. I have to take the shots. I'm on something that cuts down my testosterone, which they believe fuels the estrogen production. So that's the theory behind it. I will tell you this that the whole time I was going through this other than probably my chemo I work out every day. I swim or I walk or I lift weights. I do keep active and from what I can tell the people that keep active and work out and make sure that they're doing the best, they can seem to get through this a lot better than the people who don't. So I'm going to tell people out there if you don't work out, start walking. Start doing something positive for your body, because it's very important. I feel great right now. I've got my fingers crossed. Knock on wood, I'm cancer free. Yeah, I did what they recommended and I'm still doing what they recommend and, yeah, so far, so good you're amazing.
Speaker 1:I'm so glad you are here and healthy and say thank you to your wife for being such a great support system. You know, and earlier today, when people think of chemotherapy, whether it be a male or a female, it is oh my gosh, I'm going to lose my hair. Did you lose your hair?
Speaker 2:Oh yeah, oh yeah, I knew I was going to lose my hair. And it's really strange, jen. I mean you just touch your hair and it just comes out. There's no pain, nothing. So I started doing that. I said, oh, you know what? I took my electric shaver and I just my wife came home one day and she goes, oh my God, you're bald. I said yeah, and she said actually, you look better bald. So I mean people were telling me, wow, you look so good being bald, you know. And I was kind of worried like, oh geez, what am I going to look like? But yeah, you do lose your hair With the drugs.
Speaker 2:Today I will tell people out there. They give you so many different things to prevent the side effects, like the nausea and the vomiting and that kind of thing. I never had any of that, it was great. And they adjust the dose for your age and things like that. You know, I went through one type of chemo. There are other chemos out there that are much stronger than what I've had, but they still have all these drugs, you know, steroids and things that they give you that prevent a lot of the side effects.
Speaker 1:You know, my dad is a cancer survivor as well and, like you, with your hair it just kind of started to fall out. So he also shaved his head, and I equate that to the individual taking control of a situation instead of letting the situation cause the effect. Would you say that's true?
Speaker 2:Yes, yes, I would. And I was going to say the first time, you know, I told you I was devastated with the cancer. The second time around, I knew what to expect and I said to myself it's not a death sentence, it's a situation and I'll deal with the situation. And that's how people out there have to attack this thing. Don't think, just because you have a cancer diagnosis, that it's the end of the world for you. It's not. It's a situation and you'll get through it. So a positive attitude is really what you need. I just wanted to tell my story how I got involved with advocacy work for this.
Speaker 2:I went to my dentist before my first mastectomy and I had to have a crown put in my mouth. They had the crown in the process of getting ready and I said, hey, my cancer surgery's on February 8th. I would really like my crown to. You know, if you could expedite everything, at least get it done the day before I'm having cancer surgery. Now, at that time I was a little bit like most men, like, eh, you know, I don't need to tell him it's breast cancer. You know, I just said cancer surgery and let it go with that. And they said, okay, we'll do our best. So they called me the day before. They said we got your crown in. We'd like to put it in right now. Can you come in?
Speaker 2:I said yeah, so I come in and the technician sits me down in the chair and she goes I understand you're having cancer surgery tomorrow. I said yeah, and she said what kind of cancer surgery are you having? And I said breast cancer. And she started laughing, jen, and she thought I was joking and she said, oh, that's such a funny joke. No, really, what kind of cancer? And I said breast cancer. And then she kind of went oh, I'm sorry. And I thought to myself you know what? A light bulb went off, jen, and it said to me men shouldn't have to go through this. This is not right, you know. I mean, it's not her fault, you know, I didn't blame her or anything. She wasn't doing it out of maliciously. And I said you know what? I don't know what's, you know what's going to happen to me, but I'm going to advocate for male breast cancer.
Speaker 2:And then I got involved with the group uh, malebreastcancerhappinessorg, who are very nice to me, because when I first called them and told them about this they just treated me like a family member and we still have that. I have a group. Every month we meet and we talk like a support group. Everybody's failing. We met in 2019, when I just joined the group and when COVID hit and everything, we couldn't meet anymore in person. But we are going to meet this April in Kansas city. We're going to have a conference, a national conference, and all the men are going to get together. So and we haven't seen each other for a long time so we'll get to that.
Speaker 1:I love that and you know, one of the questions I had written down for you was is there a support group Right? And so I am so glad to hear that there is and that you found it and you're advocating, and you know how many men are in that group unfortunately, a lot of the men are in the group but a lot of the men aren't active in the group but they still support the group.
Speaker 2:I, I do advocacy work and I talk to women at women's groups and and the women just are so much more uh, bound to this thing together and men are just like that, but there's, there's hundreds in the group. I have the monthly meeting on Zoom and we all get together. You know, whoever comes in, they know that there's a meeting once a month and we just discuss our issue and learn from each other with experiences and things like that, because a lot of the men, when they're first diagnosed, they have nobody to talk to. There's no. Where are you going to find another man with male breast cancer? Now, if you're a woman, you know it's a different story. You know one out of eight, so you know they're everywhere.
Speaker 1:Well, and there's a whole month October is, you know Breast Cancer Awareness Month.
Speaker 2:October yeah.
Speaker 1:Yes, it's pink. You're exactly right. So your message is valuable, because it's not out there enough. What type of change would you like to see happen?
Speaker 2:I'm glad you asked that question. I'd like to see, and our group would like to see, a reduction in the sexual stereotyping of this as a woman's disease. We'd like to see the language in the media degendered and we'd like to see more funds, since we're 1% of the people getting breast cancer. We'd like to see more money for male breast cancer research. We also like to see and I advocate for a screening program for men with a hereditary predisposition to breast cancer, such as a family member, like I said, having ovarian prostate or breast cancer in their family, and we'd like to see more imagery across all the mediums to acknowledge that the disease does exist in men. So that's a big thing for us that engendering and that stereotyping, and we're working on it, and you'll see more and more things about male breast cancer in the media thanks to what we're trying to do.
Speaker 1:Thank you, Pardon me for asking because I do not know. Y'all have a ribbon, I'm assuming, and what color is it?
Speaker 2:Yes, we do. It's a ribbon that's red and blue.
Speaker 1:Red and blue. Okay, great, yeah, I'm going to find that because I want to put it in your cover art. I think that that's really important.
Speaker 2:Yeah, and anybody listening to this? Please go on our website malebreastcancerhappensorg. You can get a breast self-exam card which shows the signs and symptoms and how to do a monthly breast exam, and that card is also in, I believe, almost 20 different languages around the world. We work with a group called breastcancerhuborg and we've translated that self-exam card all over the world because we do have members in other countries Japan, australia, new Zealand, europe, everywhere.
Speaker 1:I love it and I have a resource tab on my website, so I will make sure to add some of this information as well, as long as in the show notes. Lastly, what would you like our audience to take away from this episode?
Speaker 2:I would like them to take away the fact that you have to be your own advocate. You know your body best. You know if there's something wrong, to tell the doctor what it is. If you don't get the answer back from your health care provider, I strongly suggest you get a second or third opinion. Find a health care provider that you're comfortable with, comfortable with. I also would urge everybody to know their family health issues. Who are the people in your family that do have cancer or any other disease for that matter? I would like everybody to go to our website, breastcancerhappensorg and download that self breast exam card and do those self breast exams every month.
Speaker 1:Absolutely, Ron. Thank you so much for being my guest on the I Need Blue podcast.
Speaker 2:Well, it was a pleasure, Jen, and I'm glad I could help spread the word to everybody listening in your audience, and I wish you the best of luck down the road.
Speaker 1:Thank you, and I'm going to do my part to spread your message as well through my podcast and my social media. So I'm excited to help in the ways that I can help. So, and I'm sure I will be talking to you soon.
Speaker 2:Oh yeah, take care, thank you.
Speaker 1:And this is Jen Lee. Thank you for spending time with us today. If you would like to learn anything and everything about I Need Blue, visit my website, wwwineedbluenet. And remember you are stronger than you think. Until next time, I'm out.
