Guy Nakoa survived Stage IV breast cancer | mastectomy | ibrance | letrozole | radiation treatment

DESCRIPTION

Guy Nakoa has survived two diagnoses of Stage IV breast cancer.  He initially felt a lump in his breast while showering in 2000.  Because it wasn’t causing him and because he didn’t think could not get a type of cancer associated with women, I went more than a decade before he chose to have the lump checked out.  In 2014, he sought medical attention, he was diagnosed and in 2016, he had the lump removed; but in 2020, the cancer returned.  He was hoping it could be removed with chemotherapy and radiation treatment, but over his initial objection, he agreed to a mastectomy of his left breast in 2024.  For the rest of his life, he will need to be on two medications, ibrance and letrozole.  Guy says from time to time he experiences fatigue but is very happy to be alive.

Guy Nakoa is from Wailuku on the island of Maui in Hawaii, but he has worked all over the world as a chef.  He was on a job in Alaska in 2000, when while taking a shower, he was shocked to feel a lump in his left breast.  Guy didn’t tell anyone about it because it wasn’t causing him any pain, and he felt too embarrassed to admit he may have a type of cancer that is generally associated with women. 

He finally decided to have the lump examined in 2014.  His doctor didn’t seem to think there was anything cancerous and told Guy not to worry about it.  Guy was misdiagnosed and he believes that, like he was, his doctor might have had difficulty connecting the lump with cancer because Guy is male.  Guy went to another doctor, and in 2016, he underwent a biopsy, which revealed he had breast cancer. 

Guy Nakoa had the lump removed in 2016.  He underwent a chemotherapy regimen in 2017 and again in 2018.  He says he lost his sense of taste, his anxiety level went “through the roof” and he had a tough time getting to sleep.

The surgery was a success, but in 2020, the cancer returned.  Guy wanted to again treat it with chemotherapy and radiation, but his doctor urged him to get the breast removed.  Guy eventually relented and the mastectomy took place in 2024.

Guy says these days, he can do just about anything he could do before he first felt the lump, but fatigue sometimes sets in, in a way it didn’t prior to his diagnosis.  By way of advice, he is quite adamant that, regardless of what seems irregular, if you notice something, anything abnormal about your health, to immediately seek medical attention.

Additional Resources:

Support Groups:

The Male Breast Cancer Global Alliance  https://www.mbcglobalalliance.org

Man Up To Cancer  https://www.manuptocancer.org

HIS Breast Cancer Awareness  https://www.hisbreastcancer.org

TRANSCRIPT

Bruce Morton: Greetings, this is the @CancerInterviews podcast, and I'm your host, Bruce Morton.  From time to time, we have to remind you that men get breast cancer, too. In

addition to all the daunting challenges that come with the disease there are some unique problems faced by men when they are diagnosed. Our guest on this episode has survived stage 4 breast cancer. He is Guy Nakoa from Wailuku, Maui, Hawaii. Now it's time to hear his story, and Guy, welcome to Cancer Interviews.

Guy Nakoa: Hello everybody, you know I appreciate being here, Bruce with you and kind of talking about something that's really important to me. I was born and raised on Maui. I absolutely love everybody, I love being here, but it only took me 62 years to really appreciate what I have, so I am really privileged to be here.

BM: Wonderful. Now we want to start with your cancer journey right at the beginning. For all of us who have survived cancer, there was that point in which we thought our health was normal until it wasn't. We noticed something wasn't quite right. For you, when did you first notice that

something was wrong, and what went wrong?

GN: Great question.  I first found my lump in 2000. So, I was doing a summer internship in Alaska. I was working for Princess Tours a wilderness lodge, and I was taking a shower one day, and then and I was like, "Oh what was that?" There was a little pain there, and then I realized,"Wow there was a lump there." And at first I thought like, "Oh men don't get breast cancer." Now that was my first initial thought about it, and for the next 12 years I just I didn't say a word, didn't tell anybody about it because I was too embarrassed to talk about it.  It wasn't something that I was comfortable with, and it was around that age where the internet was kind of first taking off and I kind of didn't really know my way around trying to get online and trying

to punch up the information that I needed back; then but you know there's so many things that I've learned along the way when it came to that, but the initial thing was I didn't have breast cancer. I wasn't a woman and then I was just in denial at that point.

BM: Guy, I have to ask. You noticed that something was wrong, but you didn't take action right away.  In fact you mentioned for 12 years, but from a mental health perspective, how difficult was that knowing that there was something wrong, but you didn't act on it right away.

GN: It's tough to describe at that time because there were a lot of things kind of happening in my life so I really wasn't paying attention to it. I was a young culinarian at the time, so I I was trying to make my mark in the industry, and so all of my focus was there. I had a young family at the time. My daughter was young so there was a lot of things that I was balancing. My wife had some health problems on her own so trying to deal with that or trying to get her squared away with disability, and that at that time and then you know kind of being a dad was a was a huge mountain to climb.

BM: Before we go any further with your journey, would you say to anybody else who found themselves in the position you found yourself in in the year 2000, would you advise would you advise them to seek medical attention right away?

GN:  Oh yes.  Definitely i mean, I'm the lucky guy that being ableto sit here today and make it making this video and talking about it so you know think about it like this is 25 years later, I'm still alive, I'm still here, so I I think that's what really makes me focus on being a bigger voice about it because I was one of the lucky guys that that actually had it so yes, would I definitely recommend that getting treated right away or getting checked right away.

BM: We want to remind you that on the Cancer Interviews podcast we are not distributors of medical advice.  If you seek medical advice, please consult a licensed health care professional. Now Guy, you mentioned that it was 12 years before you sought medical attention, but when you did seek medical attention, what did you learn, what were you told?

GN: I didn't decide to reach out until around maybe 2014.  The doctor that was our doctor for pretty much all of my daughter's life was a really close friend of ours by this time, and I had divorced my daughter's mom by this point so I was kind of on my own.  Then I went to him to go talk to him about this lump I had on the side, and then he just looked at me and he just blew it off.  He just said oh you know they're just fat deposits that they accumulate over time. I was in total denial. I was like, "Yeah that's good news to me." But you know he made a misdiagnosis at that time. I don't think he knew that men could have it.

BM: But there was a chain of events eventually that led to your diagnosis.

GN: So, by this time in 2015, I actually had another doctor who said the cancer lump has grown now so it's pretty big, now it's really noticeable. It's almost it was at the size of a dime now and now it's kind of like it's rubbing up against me.

BM: In retrospect, would you say that the lack of speed in your getting diagnosed, you're being misdiagnosed, do you think some of that had to do with your being male?  In other words, if you were female and that same lump was detected, there would have been a diagnosis right away?

GN: I think so. I think yeah, because I was a male, and you know maybe there wasn't a lot of

studies of it back then;  yeah I could see how it was overlooked like that.

BM: Now we already know that learning that one has cancer, that's horrific news. We already know that, but in your case because you were diagnosed with a type of cancer that is generally not associated with men, was it kind of a one-two punch for you? In other words, you got this bad news, but I've got to imagine there was a certain amount of shock that came with your learning that you had breast cancer was that difficult, also?

GN: It was pretty difficult to accept because of the rarity of it; you know, one out of 726 men  have a chance of getting it, and then here I was I was the guy that hit the lottery, so I wasn't

walking around feeling like I was the champion of the world at that time because even through all of that and my cancer it was it was kind of weird like. The lady did my biopsy at the time, so my cancer was the lump was just pink at the time, but when she took the biopsy three days later it just turned green because I guess it was oxidized. She never covered it but it was like totally gangrene and I was like "Wow this is serious." But it was hard to deal with, definitely.

BM: Well I do know that different cancers are different, and whereas with some diagnoses there's only one way to go in terms of treatment.  As a prostate cancer survivor, I can tell you that there are numerous options that one has when they're diagnosed, and in my experience just doing these interviews with breast cancer survivors,  I've heard that there are numerous options, numerous ways to go. For you, so for you, what were your treatment options?

GN: Well, when I first did the surgery in 2017, that's when I did it, all I wanted to do was just the surgery and then I had to go through an eight-week cycle of chemotherapy and then they wanted me to do radiation. I was against the radiation at the time, and again you know, lack of knowledge, so that was the options that was given to me. just two at the time.

BM:  As far as chemotherapy is concerned, it's never pleasant for everybody who undergoes it I think there are varying degrees of unpleasantness if there is

such a word, for you and your chemo regimen, Guy, what was the toughest part?

GN: Well, that's interesting because I did two chemotherapies. So, two chemo treatments. I did one in 2017. Then I moved to Ohio in 2018, so halfway through 2018, I moved up there.  My daughter lived up there, and I went up there to be with my grandson. My cancer came back, so my side of my chest started kind of caving in and I was like, "Oh what is that about?" So, when I went up there and started getting help for it, my oncologist at the time told me my cancer came back. So, the chemo that I did on Maui wasn't good enough. I should have went through the radiation to try and localize it. I didn't know again, so I had to go through a brand new treatment for the whole thing, and we talked about the options of what we was going to do. We're going to do chemotherapy then we was going to have surgery and then you know we was going to have radiation done. Then we was going to have surgery, so when I was on Maui when I did my treatment and they would give me the medicine. I just fell asleep. I was just so exhausted, but it was the effects having it where my brain felt like it was on fire. My energy levels would just drop low, like three or four days after that, it would drop low and then I would have to go back and then get on white clip shop would keep my cells good, but yeah, it was a tough time because it was like a two and a half week process before I went back for my next treatment.

BM: Obviously that was difficult physically, but how about the mental and emotional piece of all this?  Did you feel like there was going to be light at the end of the tunnel on this, or just emotionally was it just really crushing?

GN:  I just thought I'm living on borrowed time. At this point you know 2017 I went through the process of I was trying to stay out of the sunlight during the day because you can get you can get sunburned from the chemo treatment itself, and I slept a lot, I slept like two or three days. I lost my appetite.  My anxiety was through the roof at that time, but I just isolated myself. I didn't want to be around nobody because I felt like my immune system was compromised and I didn't want to be around anybody that could get me sick.

BM: Okay, but your journey took yet another turn in 2024 when you opted to get a mastectomy. If you would, talk about what led up to that, and what the procedure was like.

GN: So, shortly after I left Ohio in 2020.  I came back to Maui after I did the treatment up there. I actually asked my oncologist there so I had my daughter in the room at the time, and asked my oncologist like what's my life expectancy look like, and he just told me you got five years left. you know.  He said we couldn't do the surgery, you couldn't you the radiation you're going to have to just take meds for the rest of your life. I came home and in 2020 I came home right before COVID.

BM: Do you remember the kind of medications that you had to take?

GN: The medications they said you'd have to take for the rest of your life. At that time I

was taking ibrance and tamoxifen when I came home from Ohio and then the good thing about it was when I finally came over back home and then I really had a good oncologist. He really gave me a lot of hope because. The tamoxifin wasn't giving us the results we needed. He told me that sometimes if we switched the medication to using the women's breast cancer medicine we might have better results.  I told him I trust you to this point, let's go that route. As soon as I started to take that medicine, the ibrance, my numbers started to go down. Within two weeks of me taking it, I could tell the numbers was going down. We was checking more often and he would show me the numbers, so that was a really positive step in the right place, but we already got to that point at the end of 2023.  The doctor recommended for me to go have radiation done. I trusted him, we was together for a couple of years and I said yeah, let's finish it.  He was like, "Oh yeah we're just going to have to go in there and then do like a little procedure, and they're going to take like

20-30 minutes and then that way we know when we're going to go in for the radiation." So, he tells me to come in. I was like "Oh okay." So, I get there and then he comes in the room he goes "Oh no, we're going to have to take your breast off." I'm like "Whoa, wait a minute that's not what you told me, you know." And he was like, "We're going to have to we're going to have to take your whole left breast off, and you we want to make sure.." And by this time I already was in denial all this time, now you're asking me to remove my breast. Now not only am I dealing with cancer, my mental state is messed up and then now you're telling me to remove a piece of my body. So, now I'm all in denial. I told the doctor, "No we're not doing the surgery." No, forget that. We're just going to do the radiation that's it happily ever after and then we ended up having a conversation and then he kind of convinced me. I said, "Hey you know what to do, so we'll get this done.  That's what happened and I finally agreed to have it done.

BM:  Guy, if you think back to what your health was like before your diagnosis, and if we could call that 100%, these days after the two diagnoses, after the mysectomy, how close to 100% are you? Is there anything you can't do?

GN: No, I can pretty much do everything the same. So, on the mental side, I'm a lot better now today because I was able to go see a therapist or work with a therapist to help me get through that being involved with groups like this, and be able to you know, listen and share stories together. That's very empowering for me. Overall, I've lost strength. I'm 62, I'm not that young guy with full of life. I really got to really got to watch what I do but I still can do pretty much everything the same to such an extent.

BM: Guy, we are going to wrap up with this question.  If you ran into a man who had just been diagnosed with breast cancer, there might be a bunch of things you would want to tell them but if there's one point that you would want to make sure, one thing that person remembered when they walked away from you, what would it be?

GN: First thing is get checked you want to get checked and double checked. You want to do that. You want to make sure you don't isolate yourself because the last thing you need to do is you don't want to isolate and you know that that would pretty much be the same thing. Let the people around you know what's happening.

BM: Excellent.  Guy Nakoa, Wailuku, Maui Hawaii, that's been a fantastic story from you today, a story that can inform and inspire, so Guy, we want to thank you very much for being with us. Thanks for being with us on Cancer Interviews.

GN: You're welcome.

BM: And we want to remind you as we always do when we conclude, that if you or a loved one are on a cancer journey, you are not alone. There are people out there like Guy that can be there to help and hopefully ease that cancer journey, so until next time, we'll see you on down the road.

Additional Resources:

Support Groups:

Male Breast Cancer Global Alliance  https://www.mbcglobalalliance.org

Man Up To Cancer  https://www.manuptocancer.org

HIS Breast Cancer Awareness  https://www.hisbreastcancer.org

SHOW NOTES

TITLE: Guy Nakoa, Stage IV Breast Cancer Survivor – Wailuku, Maui, Hawaii, USA

Guy Nakoa has survived two diagnoses of Stage IV breast cancer.  He initially felt a lump in his breast while showering in 2000.  He waited until 2014 to seek medical attention. After a misdiagnosis, he went to another doctor in 2016 and learned he had breast cancer. He had the lump removed; but in 2020, the cancer returned.  He was hoping it could be removed with chemotherapy and radiation treatment, but over his initial objection, he agreed to a mastectomy of his left breast in 2024.  For the rest of his life, he will need to be on two medications, ibrance and letrozole.  Guy says from time to time he experiences fatigue but is very happy to be alive.

Time Stamps:

01:10 In 2000, Guy noticed a lump on his left breast

02:54 Didn’t seek medical attention until 2014.

03:40 Recommends seeking medical attention right away.

05:58 What led to his diagnosis.

07:35 Says he would have been diagnosed sooner if he had been a woman.

10:00 Guy describes his treatment options.

13:26 How he suffered from his chemotherapy regimen.

19:39 Was told he would need to have his left breast removed.

21:33 Guy compares his health post-treatment to how it was pre-diagnosis.

25:52 His advice to others.

KEYWORDS (tags):

men’s breast cancer

mastectomy

early detection

guy nakoa

chemotherapy

ibrance

radiation treatment

letrozole