Guest - Mr. Michael Singer
Moderator- Mr. Joel T Nowak
Joel Nowak: Today we are joined by Michael Singer, who is a man with breast cancer. Besides being a cancer thriver, Michael is an effective and very energetic male breast cancer advocate with a terrific organization the “Male Breast Cancer Coalition.” Michael, thank you so much for joining us and for sharing your experiences and thoughts about male breast cancer.
Michael Singer: Honored to be here today. Thank you.
Joel: Before we go into the meat of our conversation I was wondering if you would be willing to share a little bit about yourself.
Michael: Sure. Not a problem. I'm 58 years old. I retired at age 50 from the federal government as a maintenance manager for the US Postal Service. My wife and I love to travel, we like to ride our motorcycle around, kayak, hike, fish and most of all cook.
The last seven years my wife and I've been spending time advocating to raised awareness of male breast cancer.
Joel: How old were you actually when you were diagnosed?
Michael: I was diagnosed at age 50.
Joel: Is that young for diagnosis of breast cancer in a man?
Michael: Based on scientific studies, yes. Most men don't usually develop breast cancer until later on, in years, but 50 is kind of early but we have many men who would diagnose even younger than myself.
Joel: Being diagnosed at a younger age does that matter at all?
Michael: I think being diagnosed at a younger age hopefully you have less illnesses, your body's a little stronger, maybe you can deal with the disease a little better but there have not been any scientific studies weighing age from early to later stages for men. I would love to see a study on that someday.
Joel: The problem is that most people think that breast cancer is a woman's only disease. Obviously, that's a misconception. So, I was wondering if you could share a little bit about your experience with that or your thoughts on that.
Michael: Sure. Prior to being diagnosed at age 50 with male breast cancer, I had never heard of a man getting breast cancer. I was unaware that men did get breast cancer. I was under the misconception that it was just a woman's disease. After the diagnosis I come to find out that everybody has some breast tissue, in the United States approximately 2,550 new cases of male breast cancer are diagnosed every year although, we're only 1%, we do get breast cancer.
Joel: I think unfortunately many men don't realize that they can get breast cancer, men don't monitor themselves and get checked, should men be getting mammograms or do self-breast exams or having their doctors do exams, how does a man go about dealing with this potential cancer?
Michael: As you mentioned most guys were unaware of it in our population. Women are trained, at an early age, how to be aware and check for breast cancer through self-breast exams. Women can be in groups, mothers and daughters talking about breast cancer and signs to look out for. I never experienced men talking about breast cancer or any kind or of self-breast exams.
So, when you say, “Should men be performing breast checks?” Yes, average man should be aware of warning signs but there are risk factors involved some men who might be at high risk whether it's their age, being older, family history, possibly inherited gene mutations. There are some diseases out there that are more prone to male breast cancers such as Kleinfelder syndrome or radiation exposure may be excessive alcohol. There are other high-risk factors that guys should be checking themselves or being more aware of than just the average guy walking the street.
People who are high risk like myself, we go we want to have mammograms or as I like to call it a man-o-gram, gives me a little more masculinity in there. I don't want to say everybody should get breast exams but I should be aware of the warning signs. So, if something does happen. they're aware of it because, as I mentioned about 2,550 new cases are diagnosed every year and that number keeps going up out of those new cases around 480 of those guys are going to die from metastatic breast cancer due to the latter stages of diagnosis like myself. Most guys don't touch themselves examine their breasts. They don't talk to other people about it. If something does pop up we tend to ignore it or hope it will go away.
In my own case I went to my primary care doctor although I had a lump under my nipple. The first time I'm in the doctor's office, I didn't even mention it to him because I was embarrassed to talk to him about it and say, “Hey doc, I have a lump under my nipple.” After my exam and my blood work the doctor called my house the next day, we’d like Michael to come back for more blood work. It was at the second exam that I actually mentioned to my doctor, “Hey, while I'm here, I have this lump under my nipple. I'm going to tell you the truth,” it was because my wife prodded me to say the doctor that I had a lump under my nipple, otherwise I would have probably been too embarrassed to say anything to him.
Joel: Men need not to be embarrassed. It can save your life.
Michael: Oh, absolutely. We try to advocate with the male Breast Cancer Coalition and part of my mission is getting men to understand some of the warning signs so that if they have an inverted nipple, if they have some sort of nipple discharge, if they have swelling under their armpit or a lump like I had under my nipple which was painless but it was there, well they have some sort of scaling and redness of the nipple, they need to say something whether they bring it to their primary care doctor or mention it to the family member just so that they say, “Hey, you need to go to the doctor and get that checked out or see it.” But most guys are unaware of that.
There are so many people that I've talked in the past that come up to me after I've done a presentation and say, “My nipples a little inverted.” You need to go to the doctor and talk to him about it. You got to show somebody something because the difference could save your life.
Joel: You mentioned the word metastatic breast cancer. For those people who may not know what metastatic is versus I guess non-metastatic?
Michael: Sure, and just to shed some light on it, my older sister (was) diagnosed with metastatic breast cancer two years before my diagnosis and even though I had a sister with breast cancer who lived with me and I lived through all the pain and suffering with her, I was still unaware of really what metastatic meant but what metastatic is when the initial side of breast cancer whether it's in the breast or the nipple, the cells whether it goes through your lymph system or your blood system spread to other parts of the body.
Breast cancer most commonly (goes to) the brain, bone or the liver. In my sister's case she had been going for routine mammograms, never had any problems, a couple months after her last mammogram she had pain in her hip. She went to the doctor. They ran some tests and at that point the breast cancer metastasized all over her body and at that point she was in the fight of her life and unfortunately, she didn't make a year battling metastatic breast cancer and succumb to the disease. So, metastatic is when it moves from the primary location.
Joel: I’m truly sorry to hear about your sister, breast cancer is clearly serious. It can be lethal and that makes the information that you're sharing with us even more important but I am truly sorry to hear about that. I also wanted to say that you had a sister who is diagnosed with breast cancer, is not meant as a criticism, I think it's too typical with men. You have a sister who was diagnosed with breast cancer. You had a lump yet you initially ignored it. That could be lethal direction. We think your response was probably very typical of most men but we got a break through that and you're willing to share with us I think can help us do that. So, thank you so much.
Michael: Thank you.
Joel: We know that men can get breast cancer. We know that the vast majority of diagnosed breast cancer is in women, is there a difference in breast cancer in men and women?
Michael: Well, I'm going to start off by saying that in the breast cancer world, men have not been included in clinical trials. When they study breast cancer and different causes, men are not included. When it comes to clinical trials on advancing science in breast cancer, men have been excluded. When it comes to drug trials so treating breast cancer again, men have been excluded.
The science of the difference between men and women hasn't really been studied enough, but BCRF, Breast Cancer Research Foundation is doing one of the largest studies on male breast cancer, their initial findings that there are several biological differences in breast cancer between men and women.
Until more studies are done, I would be shooting from the hip telling you exactly what those differences are, but if you go on and research male breast cancer studies there is one being done by Dr. Sharon Giordano and Dr. Fatima Cardoso and they're both working for BreastCancerResearchFoundation.org which is one of the largest breast cancer research foundations.
So, I'm going to say, “Yes,” there are differences, I think further studies need to be done on what those differences are, but as far as treatment goes Joel, we have always been treated like women with breast cancer whether it's starting with needle aspirations or surgical biopsies, mastectomy, like I had myself, medication to treat those things we are being treated like the female population. Not going to say that's 100% wrong because I'm able to be here today to talk to you about it, but part of our advocacy is to be included in clinical trials and drug trials so that we can get more information on male breast cancer.
Joel: Breast cancer is a hormonally based cancer, women’s hormonal makeup is significantly different than that of men. I mean women are estrogen based and men are testosterone based. That alone could be a difference between men and women. I think it is a problem that most of the research if not all the research is being done specifically on women which is an estrogen based hormonal system. I'm imagining that any clinical decisions that a man makes, yourself included is really based on research that have nothing to do with a testosterone based cancer.
Michael: Right. If you go online it talks about male breast cancer as being a rare understudied disease that often goes undiagnosed and most breast cancers and men require the hormone estrogen as you said to grow. I was fortunate enough that when I had my mastectomy and they dissected my sentinel and non-sentinel nodes, the cancer had not spread. So, I was in situ meaning it was localized. So, I didn't have to have chemo or radiation but I am currently on a hormone blocker called Tamoxifen because my breast cancer was what they call ER positive, Estrogen Receptor positive. So, I'm on a drug that blocks those estrogen receptors to try to keep breast cancer from developing.
Joel: You're throwing out these terms ER positive and--
Joel: No. I'm glad you did. Don't apologize. The question comes when someone is newly diagnosed and the doctor uses those terms which I think is a pretty common occurrence and I imagine that was the experience you had. So, I'm curious as to how you dealt with that foreign language being given to you, thrown at you.
Michael: I'll bring you back to my initial diagnosis. From onset my primary doctor sent me to a surgeon for a needle biopsy and the needle biopsy one of the worst experiences I've ever had, I feel for the women because here I was in a doctor's office and he was taking a needle and sticking it into my nipple without any anesthesia and (it) was probably one of the most painful or just nerve-racking experiences there are. I understand a lot of women go through this on a regular basis.
We went from a needle biopsy that they couldn't get anything out so to a surgical biopsy. Then I had to go to the doctor's office to find out the result of what they removed from my body. I'm sitting at the doctor's office and I have my wife with me and let me say that you need a good support system whether it's your wife or a significant other. Having somebody come with you to doctor's appointments I think is critical, because when doctors start mentioning terms like ER positive or PR positive. You've already heard the word cancer your mind is somewhere else.
One of my suggestions is to have somebody come with you. Here I am sitting in my doctor's office and he opens up my file and he looks at me and he goes, “Mr. Singer, I'm sorry to tell you but you have breast cancer.”
I heard the word cancer and I heard the word breast and I looked over at my wife and I said, “I think he's got my sister's file in front of him. How can I have breast cancer because I'd never heard of it?”
I was shocked. I was like I was in the zone of how can I have breast cancer. He goes, “Mr. Singer, men do get breast cancer and you have breast cancer.”
Let me tell you Joel, at that point I totally zoned because my only experience up to that point, age 50, was my sister who died within a year of being diagnosed with metastatic breast cancer. So, when he told me breast cancer the only things that we're going through my mind at that point, I've got less than a year to live. I got to get my affairs in order. I have to make sure my wife is set up that when I leave, she'll be well taken care of because that was my only experience.
Then when they go on to further read the biopsy report they start mentioning those terms. My breast cancer was what they call ER, PR positive estrogen and progesterone receptors but when you go to the doctor's office, you're not prepared to understand what ER positive is or PR positive or HER2 or triple negative, none of those things. That's why people have to educate themselves and I put a lot of that weight on the doctor’s shoulders that when people come in for those appointments or diagnosis is that somebody explains to them exactly what that means.
This is back in 2010, I came home and I went on the internet and tried to look up stuff about male breast cancer. There was nothing. There were no support groups. When you went on the most popular breast cancer sites there was no discussion of men, warning signs, what they should do, what they should look for. There was nothing out there. When you want to talk about men being stigmatized or feeling like freaks, that just leads to because there's nothing being talked about it. We're in the shadows. We're being hidden when you think of breast cancer.
What comes into your mind? Pink ribbons, pink ribbons, pink balloons, pink hair, pink socks, everything's pink. What lends to that, that men can get breast cancer? It's a misconception. It's a smokescreen is what it is, but going back to those terms most people will never know what ER PR positive or HER2 or triple negative means. That's something that when you get your biopsy report, somebody needs to sit down with you and explain those terms. Depending on what type of breast cancer it is, is how they're going to treat you. Your treatment, so based on ER PR positive or HER2 or triple negative that's going to lead to how they're going to prescribe drugs, chemo radiation or whatever the treatments going to be based on those terms.
Joel: I think that your message is right on target and really important and I truly thank you for sharing that. It's really common when we're told we have cancer for us to close down. We need somebody in the room to help listen to what's being said to hopefully tell us later on when we're perhaps a little more open to hearing, secondly, to ask the questions that we may not be able to ask. As far as resources available, you said that when you were diagnosed none of these resources or none of this information was available online. Is that changed at all?
Michael: Absolutely. From 2010 to today, so much has changed in the breast cancer world. It's amazing because I attend these different conferences on breast cancer. Whether it's the Saint Antonio Breast Cancer Symposium, which is one of the largest breast cancer symposiums in the country, where doctors and scientists all come to talk about breast cancer or whether it's ASCO the American Society of Clinical Oncology where it all cancers but there's a very large group of breast cancers being discussed there by doctors and scientists.
The coalition that I belong to, we go to these conferences and we get booths and we distribute information and we talk face-to-face and we are getting the message out, that male breast cancer does exist, that we're out there, that if you know patients they're not alone because I felt alone.
When I got diagnosed I felt alone. There was nobody to talk to. When you go online there was some breast cancer groups but it was women only. They tell you it's women only we don't include men because most people don't want to open up in front of the opposite sex about the problem side effects of their breast cancer diagnosi,s but now I'm going to tell you it's changed. I can go on several large cancer sites. I'll just name a few and they talk about men and they talk about male breast cancer whether it's the American Cancer Society or the MaleBreastCancerCoalition.org or living beyond breast cancer or Medivizor.org, these are all large organizations including men's diagnosis, treatments it's changed dramatically. Had that information been there back in 2010. I think I would have been a little more -- and when I say the word comfortable I mean not as freakish as I did feel because I did feel like a freak.
It was, “What's wrong with me? How could I have breast cancer? Men don't get breast cancer.” All of that science and knowledge has been changing over the last couple years. So, you can go to most of these breast cancer conferences you'll see men represented. You'll see the male breast cancer coalition there. You'll be seeing the doctors’(and) slides including men. Before not so much, it was rarely talked about because we're the small percentage. We're the 1% but if you are at 1% of that population it sucks to be you. You want to be studied. You want to be included in clinical trials.
From my own self and advocacy it's changing so much, (I’ve) done Department of Defense peer reviews for grants for breast cancer. I've gone to Project Lead sponsored by the National Breast Cancer Coalition prior to that really the include men and now we're really getting out there. Our group, the coalition has grown from a handful to thousands. The network just keeps growing we're international we have men in New Zealand Australia and Japan and in Africa and Europe. It's just amazing how this has grown since I first got diagnosed in 2010.
Joel: If a man is diagnosed with breast cancer how is be the best way for that individual to find a support group or a support system because they don't want to feel alone just like you didn't want it?
Michael: I agree, and like you said we still have a long road ahead of us in getting that information out there but for someone who's newly diagnosed the options are going to be much better because if you do a Google search for male breast cancer now the Male Breast Cancer Coalition is going to come up.
I would recommend go to that because the coalition it's a not for profit. It shares survivor stories. It shares resources which are important for newly diagnosed people. It's a great place to start. If you reach out to them they will put you in contact one on one with another survivor or somebody going through something similar. They also have monthly meetings online where they bring in guest doctors to discuss whatever you want to talk about whether it's your diagnosis, the type of cancer you have. It's an amazing resource.
So, that's one of the first places I would suggest they try, there were other great organizations like I mentioned the, Living Beyond Breast Cancer or Metafive or an American Cancer Society. You can actually go on there now and read all about male breast cancer, warning signs, treatments, after treatment.
Now, the resources are out there, before they weren't. Someone newly diagnosed, I would suggest for them to reach out to one of these support groups. Don't do like I did. Again, when I say like I did there was nothing for me to really reach out to. I was in the closet. There was no one to talk to.
Now, a guy can get diagnosed try to get passed the stigma and the embarrassment and reach out to one of these organizations and talk about it. To be honest, you could go into a room with women and they can all talk about their breast cancer diagnosis. I couldn't walk into a room before and talk about male breast cancer because most guys couldn't relate. They've never heard of it. They'd just be dealing with other types of cancers like prostate or colon or something like that. That's in the popular stream. Everybody's heard of that. Everybody knows about that. That's changing.
Before I wouldn't talk about male breast cancer now you can't even shut me up about male breast cancer. I'll walk into a room and let it be known that I'm a male breast cancer survivor and yes men do get breast cancer and yes, we do die from breast cancer and thought the conversation that way. Those are some of the resources I would suggest.
Joel: Terrific, thank you. When you were first diagnosed, how did you tell your family and how'd you tell your friends, what was their response?
Michael: To be honest with you, originally after my diagnosis, I was too embarrassed to tell family and friends that I had breast cancer. I even asked my wife, I said, “Please don't tell anybody I have breast cancer.” I was in the process of retiring from my job with the federal government. People heard that I had cancer but they didn't hear what kind of cancer. If somebody approached me and this I find typical when somebody is you have cancer they want to know what kind of cancer you got that just seems to be thought about general conversation. So, people had asked me, “Mike, I heard you have cancer. What kind of cancer you have?” I couldn't say the word breast. I was embarrassed. What'll I call it? chest cancer, I have chest cancer.
For the first year and a half, if somebody said what kind of cancer, I have chest cancer. I can't say that initially I told everybody. It wasn't until I saw a TV special, it was called the Katie Couric show, no longer on TV but she was a journalist. She had the famous actor Richard Roundtree, African-American superhero that I grew up with. I'm a child of the ‘60s. He was a big figure on TV growing up. He had a movie called “Shaft, “so, he was macho. He was cool, and with him on the panel was this young kid, Brett Miller with them was a doctor from Sloan Kettering his name was Dr. Clifford Hard, his breast cancer specialist and here the three of these guys are on national TV talking about male breast cancer. I'm standing in my living room. I'm holding my head. I'm like, “Oh, my God. They're talking about my disease, my secret on national TV. This one was on my head Joel, it was like an epiphany. I was like, “Why am I keeping the secret? Why am I embarrassed?” Here are three guys on TV talking about male breast, Shaftwhose super cool and this young kid talking about it. From that point on, I reached out to the Male Breast Cancer Coalition. I've been on a non-stop advocacy of raising awareness of male breast cancer.
At that point the family really didn't know much about it, through social media I raise that I had breast cancer. Family and friends embraced me in ways you can't believe whether it was support on social media, it was getting together family functions and supporting me through whatever I was doing to raise awareness. It was a tremendous out pooring. My friends they gave me the nickname Uninip because I had a mastectomy and I only had one nipple left. It was friends amongst friends talk and I didn't feel embarrassed or ashamed at that point. They just made me feel a little bit more like myself again.
Joel: That is so terrific that you have such a positive response. Breast oncologist your breast surgeons are obviously going to have waiting rooms filled with women. I'm kind of curious when you go and you sit in a waiting room waiting to see your doctor, you're sitting there with all these women. You feel different? Do you get stared at people wonder what you're doing there or is that not an issue?
Michael: Oh, no. It’s a big issue. It's a big issue that I dealt with early on like you said. You go to most of these places for a mammogram or breast issues. It usually has a woman's name in the title. Once you get into the place they hand you pink paperwork and on the pink paperwork it asks when was my last menstrual cycle, am I breastfeeding? It becomes degrading that I'm a freak, then when they bring me into the back we're segregated from the women, the sign says women waiting area only, and in the meantime Joel, everybody's wearing cover-ups or paper gowns. You see more on the beach on a weekend than in the waiting room but yet I'm segregated. I can't wait with the women. I have to wait over on the other side.
So, yes you all looked at strangely you do start to have those feelings of freakishness and what's wrong with me. It's all pink there and the tragic truth is that male breast cancer is lost in that sea of pink and that happens at those waiting rooms or the clinics. Most of the time doctor's office nobody really knows what you're there for unless it's a breast specialist but go to where you go for your mammograms or your sonogram or any of that you definitely get stared at why is that guy in here? What's wrong with him? Not a comfortable feeling. I don't really look forward to it.
At that point, I changed the way we did it. I used to go by myself then I said, “I'm bringing my wife with me.” So, she started scheduling her’s at the same time I would do mine and my mother-in-law. So, then the three of us would be in there a little more comfort zone now, we're sitting together, we're a family, we're all there for our breast exams, made it a lot easier.
Joel: It's tough. I mean it's hard enough to have cancer and then to also have these feelings of not belonging or being weird or being as you said afreak makes it a lot harder and I'm sorry that you and other men has to go through that. It's just a terrible experience.
Having been diagnosed with cancer, do you find that it's changed your life has it changed, how you live your life, how you view the world?
Michael: I would say, yes. I would say that since being diagnosed I've started that mentality that tomorrow is not promised because although I'm what would be considered an early stage are. I had that experience of my sister not surviving what most people aren't aware of is that 30% of early-stage breast cancers go want to be metastatic, 30% that's a large number. Everybody's feeling great about pink ribbons and pink bows and unicorn. The reality is that 30% of those people are going to later on be diagnosed metastatic.
I live today as it's my last day. My wife and I like to travel. I'm getting out there. I'm experienced as much as I can. I want to be able to, God forbid that I'm ever diagnosed or meet an early demise, that I've lived my life to the fullest.
I'm fortunate that every time and I can advocate and raise awareness about this disease because as you mentioned earlier, I have a long road ahead of me. We still have a lot of people to reach, scientists to reach, doctors to reach. “We need to get the word out there” because as Brett Miller said, the founder of the Male Breast Cancer Coalition. He doesn't want anybody any men to feel alone when they hear the words you have breast cancer as he did, as I did. It is a feeling of loneliness when you told you have breast cancer as a man because in this society it's not normal.
I'm definitely living life differently, hard to imagine my life what it would be, had I not been diagnosed with breast cancer, really won't want to do it any other way. This has been an amazing journey for me. Everybody's breast cancer journey is different. Their diagnosis is different, how you were raised, what's in your DNA is how you're going to spend your futures, definitely living life differently. I'm living it to the fullest.
Joel: That is terrific from what you've said the Male Breast Cancer Coalition is important organization for people to begin their journey with. If you would just share how someone can reach out to the coalition.
Michael: Sure. Well, into the web. If you type in MaleBreastCancerCoalition.org, all one-word no-spaces it'll bring you to the homepage. There'll be hundreds of stories of other men who have taken this journey, their own journey, their individual journey and how it affected them from diagnosis to where they are today. On that website is also information for products for after surgery or doctors to contact. Unfortunately, we do lose quite a few men from the coalition who to come to the disease and we have a whole page for memoriam for those guys. There are phone contacts on that page but you can reach out right through the MaleBreastCancerCoalition.org website and get all that information.
Joel: Thank you. I think that's really helpful and good for somebody because as they start out it is lonely and difficult. So, I'm glad that you've shared that. We're actually going to come to the conclusion of this podcast but I actually want to know if there's anything that you want to add or you want to reiterate?
Michael: Main message I want to make is that, breast cancer doesn't discriminate, whatever color you are, whatever race you are, whatever nationality you are, breast cancer doesn't discriminate. I meet people from all walks of life who are battling this disease. Early stage breast cancer, isn't what's going to kill you it's when it metastasizes that's when you're in the fight of your life and people need to understand that it's not all pink ribbons and good times. There are a lot of men and women out there who are battling every day of their life whether it's medications and doctor’s appointments.
Metastatic breast cancer is a killer and as we mentioned before, if you have to go to the doctor, if you could bring somebody with you as a support just to take notes to listen so much is going to go over your head. It's important to have that second person there and support whether it's your spouse or your significant other, if you have a strong support system at home it makes battling this disease and living so much I don't want to use the word easy but so much better and use some many support groups that are out there.
Don't go at this alone. There's so much information out there now on the internet, use it. If you need help, go online, reach out to someone. There's so much available now and I just want to thank you for the opportunity to shed some light on this disease. There's so much more information. I suggest you to go to the MaleBreastCancerCoalition.org homepage or just Google male breast cancer there's so much great information out there. I hope to see people at these symposiums, come up to me say, “Hello?” I'm always available to talk. Thank you very much.
Joel: I really want to thank you Michael so much for spending time with us today and discussing your experience and sharing some of your knowledge about breast cancer in men. I really appreciate your candor. I particularly appreciate the work that you have given to other men through the Male Breast Cancer Coalition and again your willingness to share. So, Michael, thank you again so much for sharing with us today.
Recorded July 2018