Episode 51: Siblings Champion Male & Female Breast Cancer Awareness w/ Vicki Wolf & Harvey Singer

When Vicki Wolf faced breast cancer for the 4th time, her fighting spirit never wavered, & her brother Harvey Singer's rare encounter with the same illness shattered the silence around male breast cancer. On the "Test those Breasts" podcast, these remarkable siblings and I unite to spread a crucial message: knowledge is your most powerful ally. Their stories of survival and the creation of their nonprofit, HIS Breast Cancer , form a beacon of hope and awareness in a realm where advocacy, male breast cancer, & early detection is paramount and genetic testing can reshape destinies.

Harvey's story illuminates a path for men wrestling with a disease predominantly associated with women, while Vicki's resilience in the face of genetic revelation empowers listeners to embrace their health history without fear. 

vicki@hisbreastcancer.org
harvey@hisbreastcancer.org
hisbreastcancer@gmail.com 

HIS Breast Cancer on Facebook HIS Breast Cancer on Instagram HIS Breast Cancer on Twitter HIS Breast Cancer on Linkedin HIS Breast Cancer on Pinterest HIS Breast Cancer on TikTok HIS Breast Cancer on YouTube

The Gene: An Intimate History by Siddhartha Mukherjee 

Official Trailer PINK & BLUE:  Colors of Hereditary Cancer  HD

Pink & Blue Movie Website

Are you loving the Test Those Breasts! Podcast? You can show your support by donating to the Test Those Breasts Nonprofit @ https://testthosebreasts.org/donate/

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I am not a doctor and not all information in this podcast comes from qualified healthcare providers, therefore may not constitute medical advice. For personalized medical advice, you should reach out to one of the qualified healthcare providers interviewed on this podcast and/or seek medical advice from your own providers .

Transcript

Speaker 1: 0:01

Welcome to Season 2 of Test those Breasts podcast. I am your host, jamie Vaughn. I am really excited to continue this journey and mission into 2024 to help shorten the overwhelming learning curve for those who are newly diagnosed, or yet to be diagnosed, with breast cancer. It has been such an honor and a privilege to be able to connect and interview many survivors, thrivers, caregivers, oncologists, surgeons, nurses, therapists, advocates and more, in order to provide much needed holistic guidance for our breast cancer community. Breast cancer has become such an epidemic, so the more empowered we are, the better. By listening, rating, reviewing and sharing this podcast, it truly does help bring in more listeners from all over the world. I appreciate your help in spreading this knowledge.

Speaker 1: 0:53

My episodes are released weekly on Apple, spotify and other platforms. Now let's listen to this next episode of Test those Breasts. Listen to this next episode of Test those Breasts. Hey, well, welcome back, friends, to this episode of Test those Breasts. I am your host, jamie Vaughn, and I am double excited to have my two guests on today, vicki Wolf and Harvey Singer, and they are brother and sister and they have a very interesting story. One in particular is that Harvey is a male breast cancer survivor and Vicki is also a breast cancer survivor and I am so excited that you two are here. How are you doing, vicki?

Speaker 2: 1:37

Great, thank you. Thank you so much, jamie, for having us.

Speaker 1: 1:41

You are so welcome. I'm so glad I came across both of you. How are you doing, Harvey?

Speaker 3: 1:45

I'm well, thank you, and we appreciate any time we can get to talk about and enlighten some other people to what our troubles have been.

Speaker 1: 1:53

I love that you both have a nonprofit and we're going to talk about that later. It's called His Breast Cancer and I never knew that men could get breast cancer before I had breast cancer. So on my show, Test those Breasts. I like to enlighten people about things I never knew about and, to be quite frank, every time I have an interview with people, I close my computer afterwards and I've learned something new, and I just think that this platform is perfect for this. So I would like to start out with you, Vicki. Can you share with our audience what your diagnosis was, when it was, and what your treatments were like?

Speaker 2: 2:32

Sure, I've been diagnosed with breast cancer four times, starting at the age of 37. At 37 and again at age 39, I was diagnosed with DCIS, which is a ductal carcinoma in situ, which means that the cancer is contained in the duct, so very early, almost stage zero. I guess if you have to be diagnosed with cancer, that's the best ones to have is breast cancer. But at 37, I definitely wasn't expecting it. Our mother had been diagnosed just a few months prior, which is what set me on my mammogram and that's how they found that, unfortunately. Then again at 48, I was diagnosed with invasive ductal carcinoma, again found pretty early because we were on top of it, constantly doing mammograms, looking for, you know, keep watch for surveillance. All three times to that point were completing a lumpectomy. The first two were lumpectomies, maybe had to go in again for clean margins and we just kept the watch. The third time, because it was invasive, we did the lumpectomy, followed by radiation for six weeks. I also was on tamoxifen, a hormone blocking medication, for five years and at that time, speaking with an oncologist, I started to learn about genetic testing which I had done at that time, found out that I carry the BRCA2 genetic mutation and so because of that, I had a complete hysterectomy as well. So I really thought I had done enough, and we were doing MRIs and mammograms every six months, rotating for surveillance again. Unfortunately, 10 years later, again at age 58, I was diagnosed through a breast MRI with invasive ductal carcinoma. Once again, at that point I knew that I needed a mastectomy. There was nothing else that I was going to do to help in prevention. As much as that would help me at that point. Also included chemotherapy, and I have been on Arimidex, another hormone-blocking medication, aromatase inhibitor. I've been on it since 2017 and will remain on it for at least a few more years. We have done some index testing to see what my risk factors were, and that was recommended to continue on it.

Speaker 2: 5:05

So yeah, four times breast cancer a lot. I thought. You know, I'm young, I really don't have to think about this. My mother was in her eighties, you know, young 80. Our aunt was about 80 when she was diagnosed. So I just thought this isn't really something I have to worry about until I'm much older. But that obviously wasn't the case, and it was after my third diagnosis and having the genetic testing that I shared that information with Harvey, in addition to you know, I have three sons and I thought that information was important. Unfortunately, with a genetic mutation, it can be passed down from a mother or father to a son or daughter, so it was critical for us to share that information, even with my sons.

Speaker 1: 5:52

That is just really an interesting and crazy journey for you. I remember when I was in my 30s, breast cancer wasn't even on my radar at all, and so come to find out. So many younger women are getting breast cancer now, and so I've interviewed quite a few guests who were in either their late twenties or early thirties who have gotten breast cancer, and a lot of them didn't even have it in their family. So it's just sort of this, this thing that might happen to you, and again, that's one of the reasons I started the podcast is I want to be able to educate people like a lot of education before they're even diagnosed, if they are diagnosed, because I felt like when I got mine, I just didn't know enough, and I'm just so glad that you're out there to be able to help with that effort of educating people, no matter whether they've been diagnosed or not.

Speaker 2: 6:48

Right. You know I have three sons and even though they're young adults, they are adults in their thirties and forties. They perform self breast exams, They've had baseline mammograms and it's something that, even as a young man, you have to be attentive to your own breast and checking yourself, which we provide information through our nonprofit organization as well through his breast cancer.

Speaker 1: 7:12

Right. And then, of course, uncle Harvey gets breast cancer. So, harvey, where in that timeline do you fall when you got breast cancer and can you share with us what the diagnosis was and the treatments and your journey?

Speaker 3: 7:28

So after Vicki and my mom were diagnosed a month, a couple months apart, and then she had the, you know I was concerned for them. We were living ways apart, but she kept me informed as to what was going on with both my mom and with her and you know I took it like everything was going okay. And then she got genetic testing and called me and kind of warned me that I could be carrying this genetic mutation and I said well, okay, but I'm not going to get breast cancer. So she goes. Well, it can also cause prostate cancer, melanoma, pancreatic cancer, ovarian cancer, which I knew I wasn't going to get. But I said, okay, I'll just take it on advice. And then about eight months later I had noticed a change in my left breast, especially in my nipple, and I was a little overweight at the time and I thought I was just flabby and out of shape. And then it started to hurt a little bit and I was in Chicago with a bunch of guys that we meet up with every year, including Vicky's husband, and a guy I hadn't seen in a while came and gave me a big bear hug and when he hugged me I got a pain that shot from my left nipple into my ear, almost like somebody had stuck a knife at my chest, and I said, okay, that's not right. And when I got back I showed it to my wife. My wife said oh, you're always looking for something. You're a hypochondriac, and she goes. If you're really worried about, go to your doctor. Male breast cancer really wasn't on our radar. Even though Vicki had warned me, it still wasn't there. But at that point I kind of knew something was up. So I went to my doctor. It was a female physician, internist, and she felt around for about 10 seconds and said I'm sending you for a mammogram. I said how can I do a mammogram? And she said just like we do it for women with small breasts, which was and this was a Friday afternoon show, but I don't want you to worry about it all weekend, so let's just go get the mammogram and clear it up. By the time I got the mammogram, the ultrasound, they scheduled me for a biopsy the following week. But I at that point I knew what was going on. I didn't have to wait for a needle biopsy to tell me it was running in my family. She had warned me. I did some research. I was diagnosed after the needle biopsy they said it's definitely malignant. Scheduled surgery. I was 54 years old. My kids were finally out of the house, they were in college.

Speaker 3: 9:33

I didn't expect to be starting this whole new journey of being sick. I was hoping to get my life back, to go where I could play golf when I wanted to and do what I wanted to do. And I started the journey. But having the surgery, it was stage one. I had a full mastectomy with guys. They cannot do a lumpectomy. I guess they can now if it's in a very specific place. But at that time it was just let's have a mastectomy. The big question was bilateral or singular, and my surgeon kind of convinced me that I didn't need to do both. The odds of me getting recurrence and the other breasts were pretty slim. We were going to do surveillance anyway. Retrospectively I probably should have done both at the time, but I'm not going to go back and have a preventative mastectomy now. I do surveillance twice a year MRI and mammography for my other breasts but the journey just took us in a place.

Speaker 3: 10:21

When I finished through my treatment I also had prophylactic chemotherapy non-extenduating disease. But BRCA2 mutation cancers are very aggressive in most cases and oncotypes were high. So I went to four different oncologists trying to avoid having somebody tell me you don't need chemotherapy. But that wasn't the case. What differed was the type of chemotherapy, but that's another story for another day. We can talk about later, if you want.

Speaker 3: 10:45

But when we finished, vicky and I had five boys and we now know that each one of those boys was 50-50 to carry the mutation and going through as a guy was very difficult. The system was not set up for guys. It's still not really set up. It's better now and we like to think we had something to do with changing some of that. The protocols were there. The forms were different. There were forms asking you most of the things when was your last period? You had vaginal dryness, things like that that just don't go with a guy and it was just.

Speaker 3: 11:11

The whole thing was very emasculating and we just said, vicki and I said we have to do something to change this, which is why we started the foundation to make guys aware. And, just like you said, you didn't know until I hit you over, most guys don't know. I would say 99% of guys don't know this. And Vicki and I will tell you point blank we've had a lot of physicians and healthcare professionals that didn't know. They'll look at my chart and they go wow, I didn't know a guy could get breast cancer. You know, it's like you must've missed that class at medical school. So we work hard to try and educate and let people know. But it's been an interesting journey, one we never expected to take. I never expected to take it. I was concerned about cancer, like everybody else in the world, but I never thought I'd get breast cancer.

Speaker 1: 11:52

That's really interesting that doctors aren't aware either, and it seems like you are a second opinion person too. So we're going to talk about that a little bit later. But, to be honest with you guys, I sought you out because I wanted to know more about male breast cancer. So clearly you guys are out there, and when I reached out to Vicki, I really wanted to be able to highlight breast cancer in men, and I think it's so important for all of us to know. There were a lot of things I didn't know. I didn't know there was a breast reconstruction the kind that I had. You know, I thought there was. Just implants are going flat. So I try really hard to have guests on my podcast that so many people don't even know about. So I'm so glad that you're here and that you're able to share your story. Did you say that you got prostate cancer later on?

Speaker 3: 12:48

Yep, I actually think I had prostate cancer before I had breast cancer. But I was under the care of a urologist that did a biopsy of my prostate and came back negative, which later on I found out is not that uncommon. But 18 months later I was officially diagnosed with prostate cancer caused by the same genetic mutation, the BRCA2 mutation. Like I said earlier, it likes to cause ovarian prostate, pancreatic melanoma and breast. So I was diagnosed with that.

Speaker 3: 13:15

I went through a full prostatectomy. I didn't need chemo for that. But about two years later it started to show its ugly head again in the form of a PSA test. So I actually had what they call pelvic salvage radiation. We knew there was something growing somewhere. We didn't know what it was. So I went back and had 39 treatments of radiation in my pelvic area, just shooting everything mapped out and shooting everything, which, so far so good, has done the trick. My PSA has come back to zero and it's remained there. But yes, it was getting hit over the head twice. Vicky went through two breast cancer diagnoses in two years. I went through two different cancers, but both caused by all caused by the same mutation, the BRCA2 mutation.

Speaker 2: 13:55

Vicky Jamie, you mentioned different types of plastic reconstruction and it was interesting. I was not eligible for many of the options out there because of my previous breast cancer diagnosis, because I had radiated already the area. I'm on a thinner body type, not a lot of excess fat to take from different areas such as abdomen or thighs, so I actually had a latissimus flap for reconstruction. So they are actually taking your lats, semi-disconnecting them, pull them forward and flip them. Oh wow, that is a part of the reconstruction, along with then you know some, the addition of implants. But it keeps the skin softer and everything looking a little more natural when you obviously can have some of the some of your own tissue in there. So muscle.

Speaker 1: 14:49

What a fantastic option there Is. That what they call the lap flap. It's a lap, flap.

Speaker 2: 14:54

It was a nine and a half hour surgery, pretty intense. I think, in the end, overall pleased. I won't say it doesn't come without its issues or, you know, I did a lot of physical therapy after which I think really helped me and I highly recommend anybody going through that type of you know, any type of reconstruction to make sure you you do physical therapy afterwards to get your full range back and movement. I gotta get golfing again, yeah, definitely. Well, I golf or attempt to cough and they say you, you know, with the left lap, cough, tennis and swimming are the three things that will really hinder. I had a tendency to overswing. I thought it would really help tighten everything up, but it didn't change my swing much.

Speaker 1: 15:36

Yeah, yeah, harvey.

Speaker 3: 15:38

Well, after my surgery, that was not an option. Reconstruction for a guy was not an option in 2008. It is today. They actually have surgeons that specialize in male reconstruction. Look, breasts aren't as important to guys as they are to women. Obviously, it's our society, it's aesthetic, but, like I said, retrospectively, I might have done things differently, but some things weren't available. But they are available today if you want to reconstruct as a guy.

Speaker 1: 16:09

It is there for you. Thank you for bringing that in, because my audience knows that I am on a major mission to find all of the excellent plastic and microsurgeons in our country, because I had to go to new Orleans to get mine, and the only reason I went to new Orleans and I'm so glad that I did I had a wonderful experience there, but I had a few friends who told me about this place and that they knew somebody who went there and had this kind of surgery. This is how I found out about it. We don't have that in our area and you have people who really would love to have that surgery, but they don't have it in their area and they may not be able to travel that far to get it. So I want to know where all of the good surgeons are. So if you know any that I can be in touch with in your area, wherever you went, vicki or if you know people who deal with male he retired.

Speaker 2: 16:54

Oh, he retired. I'm very sad about it, but he did.

Speaker 1: 17:00

Shame on him. Yes, thank you for sharing that, vicki. I want to talk a little bit about second opinions and advocating for ourselves. Clearly, you've had a journey of all journeys, and you and Harvey have. You have probably learned so much about insurance, second opinions, self-advocacy. Can you speak to what your thoughts are about those?

Speaker 2: 17:23

I highly recommend. See, can you speak to what your thoughts are about those? I highly recommend, I think, if you are feeling at all questionable or concerned about what has been suggested to you and I say suggested or recommended but you have to know that you have to do what feels right for you. A doctor sees thousands of patients and what they suggest is just based on their own facts of information that they receive. But everybody's an individual and, like I said, I had to search out the type of reconstruction.

Speaker 2: 18:00

I went to several doctors, first one who made me cry because really she looked at me and said well, you look good under a sweater. Well, I needed more than to look good under a sweater. I wanted to look in a mirror and feel good. I live in warm weather and want to be in a bathing suit and feel good about myself.

Speaker 2: 18:23

And so during this process, the whole process, when you have a diagnosis of cancer or anything, you really have to dig deep and think about what you want out of what is your face with, what you're going to be up against and what's important to you and what works for you.

Speaker 2: 18:42

And, like you said, it could be logistics what's important to you and what works for you and, like you said, it could be logistics. You know, maybe you're limited by the doctors in your area, maybe you're limited by work and a schedule or family or commitments, but you have to do what feels right for you and so, if it doesn't sound like it's what's going to work for you, make your own decisions, seek out more information and find the person that's going to connect with you and understand you. The doctor that did my reconstruction asked me 10 questions Do you work? What are your hobbies? What do you like to do? Are you physically active? I mean, these are all things that need to be taken into consideration when you're going to make decisions, important decisions like this, and there's no just one set rule for everybody. So I think if you need to do a second, a third, a fourth, a fifth, you do it, you do it.

Speaker 1: 19:41

Yeah, shared decision-making A doctor needs. You're a team, you are working together to make these decisions and I think it's really important that doctors do take an interest. I think that's all part of the holistic care honestly. And so when a doctor asks or says to you well, you look good under a sweater. That is not holistic care that we need. Right, harvey, did you want to add to that?

Speaker 3: 20:05

I think it's a lot deeper than that. Honestly, I think people, even prior to reconstruction, people get diagnosed with cancer. It's a life changing diagnosis. They're spinning, you know. You don't never want to hear those words, so they just run down a path where, okay, my doctor is smarter than me, I'll just do everything that doctor tells me to do and I'll put all my trust into that person. And Vicki and I have talked about this over and over. You are now in charge. These are the most important decisions you're ever going to make in your life, more important than what house you're going to buy, how many kids you're going to have. This is life and death. And if you just want to run down a blind tunnel and you're comfortable doing that, that's fine. That's not in my DNA, it's not in Vicky's DNA, it's not, and we advocate that. Most cancer patients did not be in their DNA. Everything's available to you. This information is out there today. We have the internet. We have information at our fingertips. Research the doctor, research the hospital, because usually the doctor is running under a protocol that some hospital or some cancer hospital in the area puts out.

Speaker 3: 21:07

When I was diagnosed, I was in Rochester, new York. I had very good doctors. But when I found out that I had to have breast surgery, I didn't want just a general surgeon, I had to find a breast surgeon. And I had to find a breast surgeon that actually did male breast surgery. That was not easy. I mean, I didn't have to have that. When I had to find an oncologist, they first sent me to a general oncologist. I said okay. After one consultation I said okay, you're fired, let me go find a breast oncologist that understands what I'm dealing with.

Speaker 3: 21:33

When she recommended I should have chemotherapy, I didn't trust that decision, even though I trusted her. I sought out three other oncology opinions and what's interesting is they all recommended chemo but they had multiple regimens of chemo and these are difficult drugs and you don't understand them as a patient. But I had to, I had to figure it out and I had to research it and I actually came back to my attending oncologist and said I've met two other doctors, two other oncologists, that don't think I should have Adriamycin in my cocktail. What do you think? And she goes well, I think you should, because Sloan Kettering says you should, because that's who she.

Speaker 3: 22:13

Rochester, new York, everything Sloan Kettering in New York City was kind of their protocol. And so she took my case to her tumor board, which is where all the oncologists meet twice a month at the University of Rochester, and she came back to me and she said half agree with me, half agree with you, so it's your decision. And that's when I realized everything is now my decision. Yeah, it is not my doctor's decision, it's not my wife's decision, although she's consulted. It's my decision and I have to be comfortable with that decision. And do I make the right decision? I don't know. I'm now 15 years out. Hopefully I made the right decision at that time. But Adrienne Meyerson had some underlying circumstances to it and issues and I didn't want to have those issues.

Speaker 3: 22:49

It likes to cause leukemia and lymphoma. Everything I could find said it wasn't much different in the results from everything that was without Adriamycin, which was Cytoxan Taxothere at the time. Now Cytoxan Taxothere is the protocol. Adriamycin is only given in extreme cases. So things change. This medicine is new to everybody. It changes and if you don't take control of that care and you don't understand it, you can't make intelligent decisions. You can just run blindly if you want, and I know a lot of people have done it and a lot of people are comfortable with it. I also know a lot of people that did it and are no longer with us. So you have to make those decisions based on yourself. So, whether it's second, third or fourth opinion, it's more important that you understand all those opinions so that you can make an intelligent decision.

Speaker 2: 23:31

Yeah, you have to get educated. It's an education, and fortunately it's not something we know about in advance until it's presented in front of us and we're diagnosed. And then, all of a sudden, you have to get an education quickly.

Speaker 1: 23:44

Right, I love running into badasses like you because I'm a big mouth and I tell everybody. I'm on social media, I'm obviously do this podcast and I seek out people like you because it's so important to understand what you're going into. And I will tell you, when I was first diagnosed I didn't understand enough and so I did go out to educate myself and I did plug myself in fairly quickly to the breast cancer community. I know a lot of people who do not plug themselves in to the breast cancer or any community. When they get something, they kind of curl up and, oh okay and just go along with what their doctor's telling them. They kind of curl up and oh okay, and just go along with what their doctor's telling them.

Speaker 1: 24:33

There were times where I had to correct my oncologist. She got a few things wrong and I knew this and that's because I took my husband took meticulous notes, I listened, and so I'm so glad that you both are out there and really speaking truth and helping people to advocate for themselves and understand that they have to educate themselves. And this is one of the reasons again that I want people to understand this stuff before they're ever even diagnosed Hopefully they never get diagnosed, you know, but the statistics are so high Well, for women especially that we need to be educated before you're going and if you never get it, you are educated for someone else that's going to be getting breast cancer that you're touched by. So thank you, harvey, for explaining that. It's very difficult for men, just because there's so many people who don't know enough about it and love your voice.

Speaker 1: 25:25

So you have a nonprofit his breast cancer nonprofit and I think it is spectacular and I'm going to ask you guys if I can house that on the nonprofit that I just started. I'm still waiting for the approval, but I'm pretty sure I'm going to get it. But I don't sell anything. I educate and I provide free resources to my audience, to the people who come to the website, and I would love to be able to house what you have on my resources, if that's okay with you, and we'll talk about that later. But, harvey, I would love for you to share with us, share with our audience, what his breast cancer is and how it operates and where it's taken you to today.

Speaker 3: 26:13

So, as I stated a little earlier, it was something that Vicki and I came up with after my diagnosis and treatment that we needed to change the rules of engagement for men. It's been kind of a. It was a pipe dream at first. It's become a very strong reality of our lives. It's what we dedicate our lives to is to helping other guys. It was there originally as a just a male breast cancer organization to try and inform. We've gotten a little bit closer to the genetic side of things because we are genetically linked to our cancers and we work very closely with, like, the Bassett Center in Philadelphia, who is the number one BRCA research center in the world and we're partners with them and a lot of stuff. But it's there to help guys navigate the waters that I was thrown in, that were so turbulent at the time that I didn't know what I was doing coming or going and it hits you over the head and we just like to give guys a place where they can come and get some information. We are not doctors. We can't medically tell you what to do. We can give you options. We can give you resources. We have a very strong Facebook page of a community of men that have been through this, that somebody comes into the organization. We allow them to come in. First we screen them to make sure that they are what they say they are, and then other guys they say what they have and their questions and everybody from the chat chimes in and tells them what they went through so they can get some information. It's funny because I am not a big person on group things, group communities as a whole. When I was going through it I didn't want to hear everybody else's problems and issues. I'm more self-indulgent. I wanted to figure it out on my own, using as much information as I could find on my own, because a lot of times these communities you get the wrong side of the story or you get a different side of the story that may not pertain to you and you take that as gospel. So you're going to be careful with that. But we started the community Vicky. Actually it was actually Vicky's idea to start the community on our Facebook page to engage men and it's been really positive. I mean, I monitor it, I comment where it is. It's sometimes coming from me or from Vicky. It has a little bit more oomph to it, it's a little stronger comment, but I think everybody takes something out of it and you know it's a sense of community.

Speaker 3: 28:24

Look, men with breast cancer is a very small community. There's about 2,600 cases in the US diagnosed every year. The problem is it's usually diagnosed later than female breast cancer because we're not going through normal mammogram screenings. Unless you have a reason for it, most insurance companies won't even approve it unless you have a reason to have it, like Vicky's kids have a predisposition to it. So they're diagnosed later. Guys are stupid with medicine. They ignore symptoms, they ignore intelligence. Sometimes we appeal to their spouses to help them because the guys are just like oh yeah, I pulled the muscle, it's nothing, it's nothing, oh, it's a bump, it's no big deal. So it's tend to be diagnosed later. So the mortality rate is much higher than in female breast cancer, percentage wise, because it's diagnosed later.

Speaker 3: 29:07

So our organization is there to help you navigate the waters, give you the education. We have links to so many great organizations that can help you directly from their organizations and their information, and it's been much more than we ever dreamed of. When we first started it we just thought we'd start this page. We were the first of its type. There are a few other male breast cancer organizations around. We were the first one that we knew of. We couldn't find it and part of it was when I was diagnosed. There was nothing out there. For me I was like Googling male breast cancer and finding nothing. You know some family that paid homage to their father that died from it. You know that's a little disturbing, so that's why we did it. Now we're just totally immersed in it and it'll be immersed until the day that we step off this earth yeah, there's a guy named phil that I follow on instagram.

Speaker 1: 29:55

He's in the uk. Do you know who he is?

Speaker 1: 29:58

he's like super famous anyway, yeah yeah, he's been in entertainment and things like that. He's so funny, but I love that he's so out there advocating also for male breast cancer, and kudos to him. So that's why I'm always looking, I try really hard when I'm interviewing people, because primarily I interview women. I mean I've interviewed well, I've interviewed a lot of male surgeons and oncologists, well surgeons and radiologists, I've interviewed male caregivers. I really try to be careful about saying just women, right, I know that it's not just women and I want to be able to basically say people, you know, human beings get breast cancer, but sometimes you know it doesn't come out that way just because we're conditioned to say females and it's the sisterhood of all sisterhood, which Vicki and I know, that female breast cancer is the sisterhood of all sisterhoods. Now we want to make sure that we know that there's a brotherhood too and we want to bring light to that. So I love that you have this nonprofit.

Speaker 3: 31:05

Part of the problem is there are some famous people, guys, that have had breast cancer but they didn't want to come out about it. They didn't want to talk about it. It was an embarrassment, it was emasculating, it was a lot of other things that can. I know of many of these people. But you know, we've reached out to them but they're like no, no, no, we're not interested. You know, they don't want to talk about it. It's like it's kind of related to how female breast cancer was in the fifties. It was kind of hush hush. You know, you went and had a surgery, you put falsies in your bra and you didn't talk about it. Everything like it was an embarrassment. We're trying to get rid of that stigma and it's gotten better, but it still has a ways to go and we're just going to keep working as much as we can. But guys don't want to talk about it, they don't want to be associated with it.

Speaker 1: 31:47

Right, I do know that Beyonce's father says he likes to call it chest cancer.

Speaker 3: 31:51

Yeah, which is a problem right there. That's a problem right there Right.

Speaker 1: 31:55

Yeah, I mean I know that he means well and all that. I have looked at all kinds of things I like the real raw it is breast cancer. We all have breasts, you know, no matter what.

Speaker 2: 32:08

Men have breast tissue. We all have breasts, you know, no matter what, men have breast tissue. That's what nobody realizes. Men have breast tissue at puberty. It doesn't continue to develop like it does for women, but there is breast tissue in the chest, and so that's and the fact that people you know, especially medical professionals, are not speaking to their patients, their male patients, and saying you know, here's how to do a breast exam. Or we know you have a family history mother, aunt, grandmother, whatever. Let me show you. Or do you know how to do a self breast exam? It takes two minutes. You know, once a month in the shower when you're with your girlfriend or wife, make it part of the you know the experience and check your breast, check your breast tissue. However you want to say it, it's all the same.

Speaker 1: 32:56

Look at yourself in the mirror. Is there anything? That's changed, yeah, so I want to wrap up a little bit. I do want to ask, vicki, what kind of advice you would give and I know some of this has been sort of infiltrated into our conversation but what kind of advice you can share with those families out there who have discovered that they have the BRCA gene.

Speaker 2: 33:18

Well, the first thing I would say is congratulations, you've been tested, and that's really the first step. I think that it's very easy to put blinders on, you know, and just think that there's well, my mother had it or my grandmother had it. It doesn't mean anything to me, it may not, but it might, and the only way to know is to go through genetic testing and find out. Now, that being said, I highly recommend, if you are considering or have reasons to consider genetic testing, that you do so with a genetic counselor, so that you have a full understanding of what this means. The test is pretty simple it's a blood draw. It can be done saliva also, but it's easy.

Speaker 2: 34:06

But it's important to know what those results might mean to you and what it might mean to your children or immediate family, extended family, and you know, we gather for holidays, we talk about all kinds of things, whether it's the weather or politics or travel. We need to talk about our family history of health. So many people don't even know that their aunt had breast cancer because it wasn't talked about. Nobody spoke about it. I can't tell you how many times in a family, once we are having a conversation, they find out that their uncle had breast cancer and they didn't even know it. So start the conversation, find out what your family history is all about.

Speaker 2: 34:53

If there's the right reasons, look to a genetic counselor. We have links to all that on our website at hisbreastcancerorg. Google it. It's out there. But the testing simple, does take about three weeks to get the results back and, like I said, with the right information and support, you have a full understanding of what that means, what your risk may or may not be. It's important and I will really stress this one it's important to know that even if you carry a genetic mutation, it does not mean you are going to get cancer. It means that you are at a higher risk, and so surveillance, having the right exams, checkups, are important to finding it early, but it doesn't mean it's a death sentence.

Speaker 1: 35:42

I like that you brought that up, because I think there are a lot of people who are afraid to even go get mammograms for whatever reason, and I understand the fear, I get it. But I also think you talked about how your uncle didn't talk about it, and part of me is like, do they have any idea Probably not how much they can affect other family members and other people by just talking about it? And my guess is no, they don't, they're just fearful and they're embarrassed or whatever it is. I mean, I know women who are embarrassed that they got breast cancer. I mean, for me, when I was diagnosed, I wasn't really embarrassed.

Speaker 1: 36:20

I was confused, though, about some of the comments that were made to me, like, oh, but Jamie, you were so healthy and I thought, oh, my gosh, well, I am healthy. And then come to find out healthy people can get breast cancer. It's crazy. And so just some of the comments that people say are really difficult, and I think a lot of people shy away from oversharing or whatever. I'm just an overshare because I want to get it out there. I think it's really important to imagine being a man.

Speaker 1: 36:50

Yeah, exactly, cancer, exactly yeah.

Speaker 2: 36:53

You're embarrassed by questions you know, and I know Harvey can share. You know without even a question. You know good friends said you know are you going to play from the girls golf tees now?

Speaker 1: 37:05

Yeah, nice, it's so inappropriate, right? That's another thing that I do on this podcast is I out people for saying some of the things that they say, because it is inappropriate, it's cruel and I don't think that they mean to be cruel, but to say things like that is just no Trying to make light of a difficult situation and they honestly don't know how to respond.

Speaker 2: 37:29

And most people don't know how to respond to somebody who has shared with them important information, whether it's cancer or whatever you know. So it's why we bring in some blue to the pink world. Our ribbon, our logo, is all pink and blue. We were part of a wonderful documentary called Pink and Blue Colors of Hereditary Cancer, Highly recommended, especially anybody in the genetics world so you can look for that?

Speaker 1: 38:02

Do we have that on show notes for your resources? Can we add that? We can add that? Yes, I would love that. I would love to watch that. Yes, harvey, I do see that you have your t-shirt on. I love the logo. I love how it's just out there, love it.

Speaker 3: 38:18

Yeah, it's funny because I wear today. I had physical therapy. I'm going through an issue with my neck and shoulder. I had physical therapy and I was wearing this shirt and my physical therapist started asking me about the shirt, and on the back of the shirt is like things that men can, that you know that men can get breast cancer. You know all the other things that go with it. And I wear it to the gym all the time. I'm in the gym three times a week or so and I wait for somebody to like look at me. Even it's funny because they don't usually engage me, but I'll see them looking or at and then I'll immediately engage them.

Speaker 3: 38:48

At first, the first year or so, I was embarrassed. I would go to the beach, I would keep my shirt on. I didn't want anybody to see it. And then I realized the more I can get educated, the more people I can get to talk about, the more people I can get to educate them and maybe save their lives or somebody they might know. So I wear it proudly. It's a great t-shirt, by the way, you can get it on our website.

Speaker 3: 39:10

I love it, so people can see it and then ask about it Like they don't understand. I mean, the his comes from. They're actually my initials, so it was an easy name for our foundation because it means for a guy, and. But yes, it's been an interesting way to get it out there and we do as much as we can to promote it. Just not because you had mentioned before about our website. Our organization was started in 2010. Vicki and I outside of a few people that are paid for marketing help and things like that part timers we don't take a dime out of it. Everything we get comes in, goes back to a great organization, but 95% of which Susan G Komen comes in to fund Susan G Komen. You know all the people on salary there. That's not what we do and we'll never be that big, because we don't want to have an organization like that. We don't want that. We just want to help, so that's why we do what we do.

Speaker 1: 40:07

That is my philosophy on mine too. I just will be using it to run my podcast because it is all self-funded and so I want to make sure that it's more sustainable, and so I want to take that those donations and make sure that my podcast and the website and all of those things can keep on going so that I can educate people. But I also have grand plans of having a fund for like each month or whatever, or maybe every other month, to go to someone in need. There'll be an application process and I've got a small board that are volunteering for me and they will make the decisions of where the funds will go, and so I will not take any money from breast cancer patients or anything, and I want to stay small. I don't want to be a big organization either. I'm retired and I actually I don't know if you know this, harvey, I know Vicki does, but I was diagnosed with my breast cancer one week after I retired from the school district.

Speaker 1: 41:03

So, so it was like yeah, I spent my whole entire-.

Speaker 3: 41:06

You would have rather had the gold watch.

Speaker 1: 41:09

Yeah, Go gold watch, go camping. We had to cancel a lot of trips and spent the whole entire first year of my retirement doing exactly the opposite of what I thought I was going to be doing, and so I fund my podcast and everything all from a retirement fund, which isn't a lot. So that's why somebody had said, hey, let's, you should start a nonprofit. And I thought you know what? Yeah, and I want to be able to give back to the community not only education, awareness and all of that in the podcast, but also be able to help fund. You know, if somebody needs to pay for their mortgage or get nipple tattoos or go get breast care, you know.

Speaker 3: 41:47

So nothing in the breast cancer world is free, In fact one of my biggest pet peeves is when I see somebody say you know they had cancer, but they're cancer free now. You're never free. You're never free of this disease. It will stay with you for as long as you live. What you're free. We like to call it NED no evidence of disease. But you go from test to test, screening to screening. You're never 100% free. And if you can live that way, if you just want to ignore it and go on your way, more power to you. That's not what I do, it's not what Vicki does. We still screen for a lot of things. People say you're always doing some tests. I'm like, yeah, that's my life, that's what I have to do, and it's because I want to find out sooner rather than later if something's coming back at me. So I have options. Good for you, yeah, yeah, I just don know.

Speaker 1: 42:32

It's really interesting. One of my very best friends had colorectal cancer and when pathology came back they used those terms disease-free, and she said they don't use cancer-free and so it's totally understandable. I don't have any scans or mammograms or anything that they tell me that I have to do, which kind of freaks me out. So I want, I want to be able to go. Do you want them to do?

Speaker 2: 42:55

tests who's in?

Speaker 3: 42:56

charge. Jamie. Who's in charge?

Speaker 1: 42:58

Me and let me tell you how I took charge of myself. Just recently I felt something in my breast and they don't give you mammograms after the deep flap. I went into my OBGYN and I said I feel this lump and I feel some sensations. I know that I just had surgery, but I feel something interesting and she felt it too. So she was able. I said can I get an ultrasound or something? And she was able to get that approved through my insurance and I got it done. So there.

Speaker 3: 43:28

Insurance companies are the biggest obstacle, but you have to learn how to navigate them as well, just like anything else.

Speaker 1: 43:33

Yes, and I'm so glad you said that, because a couple of the gals who've been helping me with this, a couple of breast cancer survivors and a previvor, are helping me put together an insurance document that kind of lays out the terms that people need to know what it means when you are denied, how to appeal denials, and what kind of when it says oh, I take blue cross, blue shield, but what kind of policy do you have? So we're putting that together for people, for free, for people to go on and click in and download the document. You know things like that. So that insurance you have given so much advice. Harvey, Is there anything else that you can lend to this conversation that you can?

Speaker 3: 44:18

How long do you have on your podcast? We've been talking about this for 15 years, so we have a lot of stuff stored.

Speaker 1: 44:25

I have 10 more minutes, okay.

Speaker 3: 44:27

Well, the first thing I say is go to our website, because we have tons of information there and it's updated very regularly. I write blogs for vicky writes blogs for it. I could be sitting on a plane and just something comes across to me and I'll just, like you know, pick up my ipad on my computer and I'll just start knocking out some. I wrote one recently I think a couple weeks ago called you can fire your doctor, which is something we touched on quickly, and I said if it was a bad plumber or bad electrician, you wouldn't go back to them. But if it was a bad plumber or a bad electrician, you wouldn't go back to them. But if it's a bad doctor, people are afraid to change it. So you can fire your doctor. I mean, you can be nice about it. You just go to another doctor. There's just a lot of information on our website that'll help you. If you're a guy that wants to know more, just reach out to us. We answer everything that comes in. If you hit the tab to contact us, we do respond. I think he handles more of it than I do. She does a lot more than I do for the foundation these days because I'm still working. She's semi-retired or fully retired, but I think this has become a new full-time job, as she's expressed to me this morning. I got to do this and I got to get ready for force and I got to do this and it's like another full-time job. So I appreciate her for doing that. But there's just so much out there, there's so much information.

Speaker 3: 45:29

One thing you did refer to. You called it if you have the BRCA gene. So I just want to clarify that. Everybody has a BRCA1 and a BRCA2 gene, every person walking the face of this earth. They're there to protect you from cancer. It's only when it mutates that it's a problem, makes you susceptible. So when people say, oh, you have the gene, and I'm like, yeah, so do you and so does the person next to you, but when the gene mutates, it's when the problem occurs. So it goes from protecting you to making you susceptible to it.

Speaker 1: 45:56

Yeah, See, this is something I totally didn't even know. So, like I said before, every time I finish an interview it's like oh, I learned something new. So thank you very much.

Speaker 3: 46:04

You're actually getting mutations. Yes, anyway, I'll let Becky finish it up, since she's as well versed more than I am for this, but go ahead.

Speaker 1: 46:12

I do want to tell you guys, when I went to go get my genetic testing, they did a comprehensive test. I fainted, I got my, I took a picture of myself and posted it on Facebook and I said yeah. So I went and got this test and I remember sitting in the chair and they're taking it and I knew right away that I was going to faint and I told her that I said I'm going down Next thing. I know I woke up and there were like six people around me and my husband was standing on the other side. They had gone out to the waiting room and said you know, it's Jamie Vaughn's husband out here and he's like what?

Speaker 1: 46:48

happened.

Speaker 3: 46:49

Look, it's a scary thing. It's the anxiety. It's anxiety. I have two boys. They both knew what I went through. They didn't watch me go through it because they weren't living at home at the time so they didn't really see me. They had gone through chemo but one couldn't get tested fast enough and the other one didn't get tested until COVID, in the middle of COVID, when he had some time, and I forced him to.

Speaker 3: 47:09

Vicky and I had made contact with. He lives out here in LA and we made contact at one of our events with a genetic counselor from UCLA and I engaged her and she kept. Every once in a while she'd reach out and he finally came up and did it. But he said I don't want to know, because I just want to live my life, and this is something we hear all the time. I don't want to know, like you said, I don't want to go for a mammogram because I might find something. It's like idiotic, but you think about it. But my younger son couldn't get this fast enough. My older son took forever and we thought for sure the younger son was negative. We thought for sure the older son was going to be positive just the odds 50-50, but he wasn't. So we were fortunate in that regard and I said to him after I said you could have known this 10 years ago that you were negative. But everything has its place and people don't want to find this information out.

Speaker 1: 47:53

But let me ask you something Is it the same? I mean, I would assume it's the same. That doesn't mean that he'll never get breast cancer, because even with women, I know that more women who don't have the mutation get it.

Speaker 2: 48:06

There's still a familiar. There's still a familiar risk factor. So the percentage has dropped greatly, but yes, it is possible.

Speaker 3: 48:14

There was only a 6% chance that I was going to get breast cancer as a guy, even with carrying the mutation, but that 6% found me. So you don't know. Look, we have another brother. We have an older brother who's also a carrier and he's 73 years old now. He's never had cancer. A carrier, he's also okay, and he's never had. And he's 73, 73 years old now. He's never had cancer. But he's had a lot of other stuff, but he's never had cancer.

Speaker 2: 48:40

So you can he doesn't even go for no testing, check, you know he's not doing mammograms or anything which he could be, you know, because he carries the mutation. But he's educated and he'll be aware and if something changes, obviously he'll know it quick enough, hopefully doing some self breast exams. I have three sons an older son and then identical twin boys. My older son got tested, did not carry the mutation. The twins it was very important to me that they test together because I didn't want one to hear the information from the other one and they're identical, so obviously if one does and the other one would, so they did. They waited until they were both ready, married and one of them already had a child. But they knew, even if they were positive, that they wouldn't choose to do some of the things that you can choose now in preventing it to eliminate the mutation moving forward.

Speaker 2: 49:37

He's a naturopathic doctor. He didn't want to play with science like that. It's a very large expense as well. My identical twin boys unfortunately do both carry the genetic mutation and, as I said, they go every year for a mammogram baseline mammogram. They see the oncologist. They are involved with the young adult support group through the Bassler Center as well. They're obviously very informed.

Speaker 2: 50:01

But I have six grandchildren, four from the set of twins, a boy and a girl each. So I have three boys, three girls and when I got tested it wasn't about me when I first got tested. I tested because I thought one day maybe there will be a vaccine and my children, grandchildren, great-grandchildren that will help them. If they have this information, this can be a life-saving support for them. I wasn't even thinking. I wasn't really thinking about my brother either. It was really just about my children, my family and in the end obviously we're much closer to the possibilities of a vaccine and I'm sure there'll be many, many things on the horizon in the cancer and breast cancer world and I think this is great information to have. What you choose to do with it is up to you. But I think this is great information to have. What you choose to do with it is up to you, but I think it's great information to have, so to not get tested to put on those blinders. It's a shame because it's selfish. It's not just about you.

Speaker 1: 51:06

Do you on your website have resources of where really good places to donate for research at all?

Speaker 2: 51:14

To donate for research. Well, I mean we are-.

Speaker 3: 51:17

I'll say Basser.

Speaker 2: 51:18

In our resource page, many, many organizations, nonprofit organizations, and they would all welcome donations, as do we.

Speaker 1: 51:28

so my point is is that so your funds do go towards research too? That's what I'm kind of getting at. Is that there's so many people out there who are wanting to donate to a legitimate source that is going to go towards research and coming up with the vaccine or whatever?

Speaker 2: 51:48

Right. We work with other organizations who are doing advocacy work. We are writing letters to local and people in Washington DC advocating for changes, changes in testing, changes in exams, and you know whether it's genetics, male breast cancer, et cetera. So yes, that is daily for us, et cetera.

Speaker 3: 52:15

So, yes, that is daily for us, but BASER is probably the main research center that we support that we, if you just want research, because they are the leading. They're leading the charge for this vaccine.

Speaker 1: 52:21

What's it called again BASER? It's University of.

Speaker 2: 52:24

Pennsylvania, the BASER Center. We also work with an organization called FORCE Facing a Risk of Cancer Empowered. We will be at their. They will have this the first year due to COVID, that we will actually be back live for a conference in June in Philadelphia. We will be there not only to sit in on sessions and join in on discussions, but we will be exhibiting as well to reach other people. So they do a lot of advocacy work, legal, helping to make changes. So I mean, I've sat in the office of Komen and had conversations with them about what can be done and how things can be done differently. So, yes, that is what we do. We are not there just or I should say only for the people, but also for other organizations, as well, perfect.

Speaker 1: 53:17

I love that. I love that so much. And I see that you have the Bassler Center link and so in our show notes, before we wrap up, I have both of your email addresses in there. I have the His Breast Cancer Gmail in there. Facebook page, instagram, twitter, linkedin, pinterest, tiktok, youtube you guys are all over the place Love it. And then you have resources that you want to kind of highlight your hisbreastcancerorg Facebook group, the Bassler Center and facingourriskorg. I love it.

Speaker 2: 53:48

And I'll add one other thing so many great I was just going to say I know there's a on there mentioned um Harvey has written a book, um, it's called. You have breast cancer.

Speaker 1: 54:00

I got it, I see it.

Speaker 2: 54:01

That is available, uh, directly on Amazon. Harvey, you can touch on that a little bit about your book.

Speaker 3: 54:08

Yeah, it's just. I wrote it going through chemo and I needed something to cathartically get me through the night so that I couldn't sleep. I do have a journalism background. It's just, I wrote it going through chemo and I needed something to cathartically get me through the night so that I couldn't sleep. I do have a journalism background, so I just penned the book and I put it away and then, after prostate cancer, I started seeing a therapist to discuss it and she told me you got a lot to say you should write a book and I told her I did, but I never finished it. So I went back and finished it.

Speaker 3: 54:27

It's not a medical, depressing book, it's a very went back through my life, my youth, some of my party days, so I tried to keep it, you know, with some brevity, so it wasn't like just about the pressing. I've read enough of those books. But so that's on there. When I retire I'll probably do the second edition of that. I will do a follow up, a sequel to that which I have so much more information now that I had in 2010 when I wrote it.

Speaker 1: 54:50

Well, that was probably a really nice healing mechanism for you. Like people have always told me, hey, you should write a book. I'm like I don't want to write a book. I know I'll podcast because I like talking to people. So this is my way of healing and giving back to the community. So well, harvey and Vicki, I just really am thrilled that we got to have this conversation. I feel like I know you so much better now and I really hope in the future to have this conversation. I feel like I know you so much better now and I really hope in the near future we can collaborate, and I would love to be able to house your stuff on my website and I will let you know when this episode releases. It will be pretty quickly. So with that, is there anything you would like to leave our audience with before we say goodbye for now?

Speaker 2: 55:31

Do your self-prest exam. Men and women.

Speaker 3: 55:36

Know your body, know your choices, advocate for yourself, be informed. So thank you for doing what you do.

Speaker 2: 55:43

Yes, thank you for this opportunity. Of course, please send us your resource link as that develops, so that we can add that to our website as well.

Speaker 1: 55:51

I will absolutely do that. Okay, thank you both and to my audience, thank you once again for joining me on this episode of Test those Breasts and remember to go to your platform and do a little rating, maybe put a little review on there. It does help get it out there to the rest of the community and we will talk to you on the next episode of Test those Breasts. Bye for now, Friends. Thank you so much for listening to this episode of Test those Breasts. I hope you got some great much needed information that will help you with your journey. As always, I am open to guests to add value to my show, and I'm also open to being a guest on other podcasts where I can add value. So please reach out if you'd like to collaborate. My contact information is in the show notes and, as a reminder, rating, reviewing and sharing this podcast will truly help build a bigger audience all over the world. I thank you for your efforts. I look forward to sharing my next episode of Test those Breasts.