Adult Cancer Survivorship with Bob Havens

00;00;00;02 - 00;00;30;15
WNPR
Funding for Yale Cancer Answers is provided by Smilow Cancer Hospital. Welcome to Yale Cancer Answers, with the director of the Yale Cancer Center, Dr. Eric Winer. Yale Cancer Answers features conversations with oncologists and specialists who are on the forefront of the battle to fight cancer. Here's Dr. Winer. 

Dr. Winer
June, as we've talked about, is National Cancer Survivor Month and tonight we’ll focus on adult cancer survivorship.

00;00;30;29 - 00;01;04;07
Dr. Winer
We talked about pediatric cancer survivorship just a few weeks ago, and we're going to talk about what that journey is like. Of course, it's different for every person according to the American Cancer Society, there are over 18 million adult cancer survivors in the U.S. and that number continues to increase. While there are a lot of breast cancer survivors, there are only a small number of male breast cancer survivors.

00;01;04;19 - 00;01;41;18
Dr. Winer
That's not because men typically don't become survivors, it's because male breast cancer is quite unusual. Accounting for less than 1% of all diagnoses of breast cancer. And joining us tonight is Bob Havens. Bob is an almost 80 year old resident of Connecticut, a Vietnam War veteran who's in the Navy and unfortunately was diagnosed with breast cancer just a few years ago.

00;01;41;28 - 00;02;10;05
Dr. Winer
Bob, welcome to Yale Cancer Answers and thanks for talking with me and for sharing your story tonight. 

Bob
Thank you for the opportunity. Happy to be here. 

Dr. Winer
So first, maybe you could just tell us a little bit about you. Have you lived in Connecticut your whole life? 

Bob
Born and raised in New Haven. Graduated from Hillhouse High School and then moved on after that with Maine.

00;02;10;07 - 00;02;35;19
Bob
My Navy for years and then got it on and on. And from there, back to school. As long as an old man wasn't ready for it when I was younger and went on to get my bachelor's and master's degree when I was in my forties. 

Dr. Winer
Wow. And what kind of work do you do? 

Bob
Most of my life I worked in Human Services, working with severely emotionally disturbed children in adolescence.

00;02;35;19 - 00;03;01;20
Bob
And then I had a career change after about 30 years and went into finance. 

Dr. Winer
Great. Okay, so maybe we could talk a little bit about your breast cancer. Mm hmm. Breast cancer in men, of course, as we said, is unusual. And how was this picked up? I am going to guess that you found it yourself. Yes or no?

00;03;02;03 - 00;03;24;08
Bob
I found something. I found something. But I didn't know what was going on. I had gone through a period of time where I lost a lot of weight, like £75. Oh, wow. In an okay way. I mean, I wanted to do that, and I did feel a lump. At one point on my left breast. But quite frankly, male breast cancer.

00;03;24;08 - 00;03;42;03
Bob
Never in a million years would ever into my mind, which is why I'm trying to get the word out as much as I can, because I know there's a lot of other guys out there doing the same thing as me.

Dr. Winer
And I just asked you before, before this, did you even did you even know that breast cancer could occur in men?

00;03;42;05 - 00;04;06;19
Bob
Never thought of it. No. Never was aware of that. No, no, no. As a matter of fact, one thing I did want to mention to you, having the opportunity to sit with you today, because this is your program. And one of the first things I ran into on the Vine Street was a sign that said Women's Breast Imaging Center.

00;04;07;11 - 00;04;22;22
Bob
And I know we're going to get into the stigma. And, you know, but I want to put a little plug in here right off the bat to see if I can get you in my corner on that one. And if we can get women's removed from that. My wife Catherine, noticed that first when I went for my initial ultrasound and mammogram.

00;04;22;22 - 00;04;41;11
Bob
When she dropped me off, when she came in, she couldn't find me and asked and said, Oh, he's in the women's. And, you know, so all the talk we do about the stigma and wanted to do something about that, you know, we need your help and just that little itty bitty thing. So when you're sitting there, you're not in the Women's Breast Imaging center.

00;04;42;03 - 00;05;06;10
Dr. Winer
That's what I will share with you as a as a as a breast cancer doctor myself, I used to talk about women with breast cancer, and I now talk about individuals or people with breast cancer. It's great. It's great. And it's for that very reason. So you felt this lump. You didn't think that it could be a cancer?

00;05;06;14 - 00;05;29;14
Bob
No. It was in the setting of all of this weight loss. And I assume at some point you saw a doctor. Well, yes, but not well. It turned out to be soon enough. I I'm not a statistic now. I am a good statistic now. But it took about nine months because I thought of every excuse in the world as to what was going on, mostly attributed to my weight loss.

00;05;30;00 - 00;05;44;29
Bob
I said, when my body is shrinking or my body is growing and my my nipple ended up inverting, and I said, Oh, okay. And then later on it came out. But then when it came out, it started to bleed. I was in the shower and I happened to look in the bottom of the shower and I saw blood in the water.

00;05;45;12 - 00;06;08;26
Bob
And I said, I think I have a problem. I said, But my physical is coming up in a couple of weeks. I'll tell my primary. But this was nine months after the initial finding of OMP. Way too long, obviously. And she immediately hooked up. We hooked me up with everyone I need to see. Got it. And you, of course, find out that you've had that you had breast cancer.

00;06;08;27 - 00;06;39;12
Dr. Winer
You learned that men, indeed can get breast cancer, although, again, quite uncommon. What kind of treatment did you have? 

Bob
Well, I first went for a mammogram and an ultrasound. Immediately after that, I had to get a biopsy. And immediately after that, I had surgery and I had a I chose to have a lumpectomy. After this, the options were given to every Dr. Berger.

00;06;40;26 - 00;06;56;05
Bob
And I remember her saying one of them was one of the best days in my life, actually, when she came in the see, my wife and I. And she said, Before I say anything else, I want you to know, I want to let you know that this is treatable and curable. And at that point, I said, okay, so what do we need to do?

00;06;56;24 - 00;07;26;26
Bob
And that's when we went forward with the surgery. And then, of course, followed by the chemotherapy. The chemotherapy was interesting. And I wasn't originally discussed. And I guess I can't remember the name of the test, but there's a test that's given, and depending on what the number comes back, might indicate, you should consider chemotherapy. And my wonderful Dr. Kanowitz oncologist said, I think the number was the okay number was not to go above 24.

00;07;26;27 - 00;07;54;28
Bob
Mine was 32. She says, I'm recommending we do chemo and then we do the radiation after that. So that's what I did. I had that and then I had the chemo and then I had 30 rounds of radiation. So that test is something called recurrence score or an archetype recurrence score. That's it. And it's recognized again. And it's a test that measures 21 different genes in the cancer.

00;07;55;15 - 00;08;32;06
Dr. Winer
16 of them are genes that we really pay attention to. And there is a complex mathematical algorithm that essentially analyzes those 16 genes and comes up with a score. And that score tells us two things. One is it says something about the chance that the cancer can come back and something about the potential benefits of chemotherapy. And when this score is in the range that you described, it means that there's a slightly higher chance that the cancer can recur.

00;08;33;11 - 00;09;04;03
Dr. Winer
But it also means that chemotherapy, while not mandated, but can sometimes help in lowering the chances of the cancer coming back. 

Bob
Okay. Mhmm. 

Dr. Winer
So that's the short explanation of what I'm sure that you can or it's win over with you. And in much more detail. And then you also had radiation. 

Bob
Yes, I did. When that was first explained to me, it was supposed to be 24 treatments.

00;09;04;03 - 00;09;28;20
Bob
And then when I first sat down with the radiation oncologist, she said, okay, so we're going to start your three treatments. And I said, Wait a minute. One thing I will tell you, when you have cancer, I don't need to tell you, but people I'm talking to here, you listen to everything. And I have the extra benefit of my wife Catherine, who listens to much more than I do.

00;09;29;10 - 00;09;58;05
Bob
And I immediately said, wait a minute, what happens to 24? And I said, Well, based on the fact that I'm going to try to explain this as a layperson with the cancer, when it's breast cancer the way you have it on the normal path, and because you had mentioned earlier, was there any lymph nodes involved and it wasn't, you think of the path of maybe from your breast to your armpits to it follows a certain track.

00;09;58;23 - 00;10;21;06
Bob
And but when you have this type of breast cancer, a male breast cancer, this way, there's a chance that some little radical fool is going to decide to go off on its own somewhere. So what they did is they increased the radiation treatments in the last five treatments, I believe, were really targeted. So it was every was like the middle of my chest, the lungs, the armpits everywhere.

00;10;21;13 - 00;10;54;09
Dr. Winer
And that's what was needed for the extra five, five or six visits. So some people might say estrogen in men. Men don't have estrogen, but indeed, all men have some amounts of circulating estrogen. It's produced in the testes. It's produced to a smaller extent in the adrenal glands, in fat tissue. And some of it actually starts as androgen and is then converted by a very specific enzyme into estrogen.

00;10;54;21 - 00;11;22;24
Dr. Winer
So there is estrogen in men. It is there in small quantities and anti estrogen therapies can work. So you're now on Tamoxifen. You're going to be on that for a number of years. Mm hmm. Okay. So I understand that there was a sort of a special life event that occurred during all of this, too, that your wife, Catherine, wasn't your wife, Catherine, when you first started going through this career.

00;11;22;24 - 00;11;51;21
Dr. Winer
And maybe a diagnosis of cancer helped stimulate something? I don't know what a simulator, but I'm sure glad she was there because she's the one to pull me through it. So it's a remarkable woman. Yeah, it did it encourage you to sort of stick with the relationship or decide to get married? I think you did get married after the cancer, correct?

00;11;51;22 - 00;12;17;19
Bob
Yeah, I think I think that from the first time we met over three years ago, we just knew from that day that we would never be separated. And whether it was cancer involved or wasn't cancer involved, it really didn't matter. One of the first things Catherine told me is the way I was dealing with this. I went on a lot of certain missions when I was in the military, and Catherine actually came out and said, you know, you're treating this like a mission.

00;12;17;19 - 00;12;41;17
Bob
And she was right. She was 100% correct. And like every mission, you can't carry it off by yourself. You have a partner or partners. And in that mission and I fell down many times. I don't want to get into that now. But the emotional impact of all of this, I'm a pretty independent person. I'm a guy.

00;12;41;18 - 00;13;04;00
Bob
Here we go again. Right. And I actually got to the point where I was finding myself often times saying, Robert, you have to eat, man. I don't care. You have to. I don't care. This is a lot of us. I don't care. But she never gave up and just kept pushing and matter of factly threatened you. Dr. Karnow, it's one time, I think you know that to Canada, it's.

00;13;04;14 - 00;13;27;24
Bob
But she's about four foot nine, and I wouldn't mess with her. And sometimes Catherine would say, Fine, you don't want to eat. I'll just give Dr. Kanowitz  a call and see what she's got to say about it. I said, okay, I'll eat. I think the remarkable thing about what you're saying is that men tend to be a little bit less willing to talk about emotions.

00;13;28;09 - 00;13;52;21
Dr. Winer
And, you know, oftentimes when people are a little older, they're more accepting. But I think what this shows is that, you know, this these things affect all of us. And it doesn't matter whether you're 30 or whether you're 75, and it doesn't matter if you're a man or woman that you know, that these same issues tend to trouble us.

00;13;53;11 - 00;14;19;08
Dr. Winer
Listen, we're going to pick this up in just a minute. We're going to take a break. And we will be back with Barb Havens, who is a breast cancer survivor. 

WNPR
Funding for Yale Cancer Answers comes from Smilow Cancer Hospital, where their survivorship clinic serves as a resource to support cancer survivors, providing patients and families with information on cancer prevention, wellness research and survivorship.

00;14;19;20 - 00;14;45;15
WNPR
Smilow Cancer Hospital dot org. Genetic testing can be useful for people with certain types of cancer that seem to run in their families. Genetic counseling is a process that includes collecting a detailed personal and family history, a risk assessment, and a discussion of genetic testing options. Only about 5 to 10% of all cancers are inherited and genetic testing is not recommended for everyone.

00;14;46;02 - 00;15;16;29
WNPR
Individuals who have a personal and or family history that includes cancer at unusually early ages, multiple relatives on the same side of the family with the same cancer, more than one diagnosis of cancer in the same individual rare cancers or family history of a known altered cancer predisposing gene could be candidates for genetic testing. Resources for genetic counseling and testing are available at federally designated comprehensive cancer centers such as Yale Cancer Center.

00;15;16;29 - 00;15;46;12
WNPR 
Added Smilow Cancer Hospital. More information is available at Yale Cancer Center dot org. You're listening to Connecticut Public Radio.

Dr. Winer
So we're back with Bob Havens and we're talking about cancer survivorship and in particular about his breast cancer. And we touched on some of the emotional aspects of having cancer just a few minutes ago, But maybe we can get back to this.

00;15;46;12 - 00;16;14;29
Dr. Winer
And Bob, maybe you can talk a little bit more about the emotional and psychological challenges of being a both a cancer survivor and specifically a breast cancer survivor, because I'll bet when you tell people that you had breast cancer, they sort of look a little funny about that because some of them don't realize that breast cancer can happen in men.

00;16;15;29 - 00;16;40;15
Bob
Yeah, I think the best example I have of that is when I went for my radiation treatments in the waiting area, they're usually six or seven guys and sometimes more. And all the guys in there except me who were in those little paper shorts, little blue paper shorts, and I had a gown on and they're drinking water like crazy.

00;16;40;27 - 00;17;07;20
Bob
And matter of fact, my first though was I said, Oh, gee, isn't this nice? They put water out for us, but they're drinking like a lot of water. And then I come to find out that for them to get their treatment for prostate cancer, they had to fill their bladders, which was not comfortable for them at all. And one day a gentleman said, You're not drinking water, and in a word that you do is you're going to be sitting out here for a very, very long time.

00;17;07;20 - 00;17;22;22
Bob
They'll never take you in. And I said, Well, I really don't have to drink the water. And he said, What do you mean there's a way to do this without drinking all this water? And I said, Yeah, there is. I said, You can't have what you have. You have to have what I have. And what's that? I said, I have breast cancer.

00;17;23;03 - 00;17;47;14
Bob
Get out. Breast cancer. Come on. You're a guy. What do you mean, breast cancer? And that. That was like, really hit me. But that also added to a little, little bit of isolation for me, too, because I was the odd oddball in that group. I mean, we all became friends and the networking was beautiful, but I was the only guy with a Johnny coat on and all these folks were running around in shorts, drinking water.

00;17;47;22 - 00;18;05;14
Bob
But I mean, made me realize that I definitely have something that's probably not too common and that's, you know, five, as you know, five days a week, six weeks, the same people every day in our AM and my Johnny Colon, they're walking around in their shorts with their caps, their water. Yeah. At least they didn't have to drink water.

00;18;05;18 - 00;18;34;23
Dr. Winer
Well, I have to say it's sort of an amusing image that you create imagining these men in their in their blue probably throwaway shorts. Right. So they were. And what do you think allows you to be able to talk about all of this so comfortably? I mean, I will tell you, I'm not all people are as comfortable talking.

00;18;34;23 - 00;19;07;24
Bob
And, you know, the truth is men tend to be a little more reticent about expressing their emotions than many women. Yeah, I have never had that problem. I've always been very open. The other thing is that, again, to bring up Catherine would you'll hear me do often. She makes it really easy for me to do that. And so there's nothing I just can't say to her or that she can say to me that doesn't really help me get through lots of stuff, but I'm very comfortable with myself.

00;19;08;04 - 00;19;29;23
Bob
I've been through a lot in a lot of ways, both in the military and out. And really when I first heard about this, Catherine's right, you know, it was a mission. Okay, I'll take on this mission. And I knew what I had to do. I used to joke around a little bit with the doctors and I'd say, Look, this is easy for me.

00;19;30;05 - 00;19;59;03
Bob
And I did say that. I said, This is easy for me. Why? Because I just have to walk in and present my body. It's there. You guys are doing all the work. And when I felt went through more a lot more than I, it again was Catherine give you a good example. Then radiation, something else all the other people should look at too in jail, that waiting room where all these folks are sitting waiting for their loved one to get through with their treatment.

00;20;00;04 - 00;20;28;22
Bob
Doctor, I'm telling you, you can hear a pin drop. No one talks to each other. No one shares any stories. They're usually looking down at their phone or just it's a terrible place for them to have to be. And there were a couple of times where, let's say the equipment wasn't working properly. So my ten minute treatment ended up being almost 2 hours a couple of times.

00;20;28;22 - 00;20;52;22
Bob
And I had to make sure to say, do me a favor. There's this redhead sitting out in the waiting room. She's got to be going crazy right now because I should be out of here by now. And the police go out and tell her I'm okay. So the folks who are sitting out there, I don't know if somebody should walk through more often or have more contact with them or what, but it's that's a tough, tough gig for these folks.

00;20;52;28 - 00;21;38;16
Dr. Winer
Well, I would agree. And I think that you make a very important point, which is that cancer can be is hard, sometimes even harder for family members. Loved ones, close friends than for the patient themselves. And, of course, this is variable and every family is different. But one of the things that we're well aware of is the need to provide support not just to the patient, but to the family members broadly defined, recognizing that there are people who are the equivalent of family members who are not blood relatives, for sure.

00;21;39;03 - 00;22;03;16
Dr. Winer
Yes, exactly. Yeah, it's a major issue. And of course, what makes it so very important is that those family members are the ones who are helping to support our patients, who are going through the therapy. So we need you know, we need Catherine to be feeling as good as she can feel so that she can help you get through it all.

00;22;04;06 - 00;22;30;16
Bob
Absolutely. Absolutely. And they're the ones who have to do things. They have to make decisions for you not being medical people. I am. I am I giving them medications the way I'm supposed to? Am I do you know, Catherine mentioned a couple of times when you go to bed at night and you lay there next to the person who you love and you're taking care of, you're going through this whole checklist in your mind about did you do what you were supposed to do that day?

00;22;31;06 - 00;22;49;10
Unknown
You know, there's a screw up somewhere in the heart. The hardest part also is to tell a person that you love when they're not being cooperative. And it was many times I was not cooperative, you know, And I hear, oh, I came by, I hear of this chemo brain and I don't know if that's a real thing or not.

00;22;49;10 - 00;23;11;11
Bob
It's probably a real thing. All right. Well, her trying to tell me at times, you know, Bob, you did this, read it. One big issue, it was balance. Balance. I refuse to accept the fact that I did not have my balance. And she'd say, you've got to be careful. You got to take it slow. I'm fine. I'm fine.

00;23;11;11 - 00;23;38;01
Bob
Until I went into the bathroom one day and lost my balance and fractured three ribs on the side of the bed. Oh, my goodness. Okay. So they have a remarkable job to do to sort of pull us. You know, kicking and screaming sometimes to do what's best for us. Well, and I will tell you that it's a bigger issue than ever because cancer treatments have become more complicated as they become better.

00;23;38;02 - 00;24;25;19
Dr. Winer
They've in many, many instances, become more complex. And as there have been changes in health care and we hospitalized fewer people, we tend to try to support people being outpatients. And what that means is that the burden on family members is more than it's ever been. Mm hmm. True. I agree. So this is it's really, really important. So what advice would you give to other men who might overlook some sort of warning sign of cancer and specifically breast cancer?

00;24;26;11 - 00;24;45;26
Bob
Well, one of the things I've learned from this is I don't wait any longer. If something's not right and if you're a survivor and or you're having some difficulties, pick up the phone call. Yeah, they're wonderful. They want you to call. Don't try to diagnose this stuff. Don't say, Well, maybe in a few weeks I'll feel better. Forget all that.

00;24;46;01 - 00;25;21;03
Bob
But it is crap. It's just your ego, your male ego stuff coming into play. I'm telling you, don't do it. I mean, by the luck of the draw, I got it in nine months and maybe nine months and three weeks. It would have been too late. Yeah, well, as I say, I'm sorry. No, no, no, go ahead. I was just say, as I understand it, one of the reasons why the fatality rate for men, even though so many, few of the fewer men get cancer, is exactly because of that, which is by the time they get it looked at.

00;25;21;03 - 00;25;40;23
Bob
Unfortunately, they don't get what I got, which was it's curable and treatable. They get, you know, wish you had gotten to a sooner, but it's now moved to this and moved to that. And I you know don't hold up to folks Don't don' be Mr. Macho can just pick up the phone and get it get it taken care of because you're not that smart.

00;25;40;29 - 00;26;09;14
Dr. Winer
Yeah, well, early diagnosis is important for all cancers. And, you know, there's this tendency once you once you ignore something for a little while, it becomes sort of the new normal. And it's harder to remember what the real normalcy should be like. And I tend to think that once once you start ignoring something, it just becomes the way it is.

00;26;09;14 - 00;26;37;25
Dr. Winer
And it's less likely that you're going to go in. So get know when you see a change. And it really is important to to to see a doctor and get the care you need. I want to touch on on one somewhat unique aspect of your experience, which is that you also spent time in Vietnam. How did that experience in any way influence how you dealt with your cancer?

00;26;39;03 - 00;27;11;08
Bob
I would say what I experienced in the military, one of the biggest things it did for me is it told me who I was taught me a lot about myself, helped me build my character and gave me. I guess the best way to put it is I believe in my guts. I trust my guts. And so I. I realized that if you take things head on and deal with them, you may not always like the results, but the end result is always better than not dealing with it.

00;27;12;15 - 00;27;36;14
Bob
That's taken us, by the way, at this point, which I want to get into this talk really quickly. This has driven Catherine and I to work with not only veterans, but all males to get the word out about male breast cancer, which is a male breast cancer awareness program. This actually started Catherine started this because she's she belongs to an organization called Miss Senior World.

00;27;37;01 - 00;27;56;08
Bob
It's a pageant and national pageant, but they only work with women who have a platform, a worthy platform. And Catherine is Miss Connecticut's senior world and we've put together this program, which is part of a book that was just written about me and my military career, which I'm very honored about. Someone pick me out of a hat, I guess, somewhere.

00;27;57;07 - 00;28;24;20
Bob
And part of that is dedicated to male breast cancer awareness. So we're meeting with groups who are meeting with veterans and everyone else who will listen to us. We've done a couple of TV shows and to get the word out on male breast cancer awareness. And then Catherine is going to be able to take this in in in November on an international level when she is a part of the Miss Senior World pageant out in Biloxi, Mississippi.

00;28;25;05 - 00;28;50;17
Bob
And she has made her platform male breast cancer awareness and also a group called Homes for our Troops to support these these disabled people. Bob Havens is a breast cancer survivor. 

WNPR
If you have questions, the address has cancer answers at Yale.edu and past editions of the program are available in audio and written form at YaleCancerCenter.org
We hope you'll join us next time to learn more about the fight against cancer funding for Yale Cancer Answers is provided by Smilow Cancer Hospital.