Casey
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Casey, a transgender man, was diagnosed with Stage 3 breast cancer three years ago. He had felt a lump a year earlier, but the possibility of breast cancer never crossed his mind. He thought it was scar tissue from having had his breasts removed when he transitioned from female to male. Casey “didn't even think of it until it started hurting like a year later.” His primary care doctor felt the lump and immediately referred him to oncology for numerous tests. The mammogram, Casey recalls, was “horrible because there's nothing to grab.” Treatment started by shrinking the tumor with eight rounds of chemotherapy, which thanks to “the day-after shot,” was not as bad as he had anticipated. Then came three surgeries, including one to remove the cancer, another to get clean margins, and the third which removed 20 lymph nodes from under the armpit. Casey’s cancer had spread, because he waited to have the lump checked out. Next came daily radiation treatments, and he is now taking tamoxifen with no discernable side effects.
Casey notes that the diagnosis and treatment for his breast cancer was weird and even ironic. He is so grateful to have been treated at a comprehensive academic cancer center and emphasizes that, “everybody from the person at the front desk” were understanding. Then he learned that his health insurance company denied payment for treatment because he was listed as male. Casey recalls it was a pain to have his insurance company change his gender back to female—to avoid having to pay thousands of dollars (which he didn’t have) for treatment. But Casey notes that the people at the insurance company he dealt with were really sympathetic. They acknowledged, “out of all the things, this guy… spends money to get breasts removed, and then gets breast cancer.” He is grateful to be living in a community that accepts transgender individuals.
Casey describes the chemotherapy and radiation phases as being in the “survival mode.” He got into the routine of showing up, getting the treatment and seeing the same people. Now that his cancer-fighting treatments have stopped, Casey misses that routine, and especially the other patients and the clinicians he saw every day. They were his support system—not only were they nice, but they really cared and understood. Outside the clinic, Casey let just a small group of really supportive friends into his cancer experience, who “played off what I wanted… If I needed to talk about it, they would listen.” He avoided people who might say, “I can't believe you have cancer,” and then cry. He wanted to focus on the positive side and avoid being sucked into his cancer. So, to the rest of the world Casey “pretended like it was no big deal.”
Casey, having dealt with several life challenges, has learned to rely on himself. Solitude has been essential to his self-reliance. Each night, he went into the woods alone and made a blazing fire. “It took me out of where I was at,” he says, “and put me in the moment.” Dealing with cancer not only took so much control and energy, but it helped Casey realize that he is stronger than he thought. “When the chips are down,” he says “I can handle it. I'm not going to sit in a corner curled up and die or let somebody else take care of it for me.” Now that he’s through the treatment phase, Casey notes this is another time, “to reinvent” himself.
Casey, a transgender man who had had a double mastectomy as part of his transition, was surprised to discover cancer in his remaining breast tissue.
Casey, a transgender man who had had a double mastectomy as part of his transition, was surprised to discover cancer in his remaining breast tissue.
Yes, I started doing hormones in '99. And then, in 2010, I got my breasts removed. And then, in 2015, I was diagnosed with breast cancer.
Wow.
So that's why they were, yeah, it doesn't, it, it doesn't happen. From what I have understood, there's maybe a handful in the United States. Because you're, you’re removing the breasts, but you're still leaving some, some of the tissue.
Got ya.
You know?
Yeah.
It's more of a cosmetic. So you're removing it, but you're still leaving some tissue there, so that's how a person can get breast cancer. there's just, they still leave tissue there. Otherwise, you'd just be flat-chested. So, they have to leave the muscle, and it's cosmetic. I didn't think it was possible. I didn't have, really, insurance at the time. And What are the odds? I mean. -- I thought I'd have other cancer before that. I mean, you know? I mean, that was like the lea-, the last thing on my mind.
When his chemotherapy ended, Casey missed the support he had gotten from people there.
When his chemotherapy ended, Casey missed the support he had gotten from people there.
You, you shut things down. You go to survival mode. You go through the motions. When you're supposed to show up for chemo, you do it. You sit there for five hours. You see people. Whatever it is, radiation, the same thing. You go every day. You're in this routine. And then when the routine stops, and you're done with things, you kind, you, I miss them. I miss the people that I would see every day because they were kind of my support. Because there was other people there also that were getting treatment and getting chemotherapy. And they were nice to you, you know? I mean, not that your friends weren't nice to you, but they were, they were nice. They were pleasant. They understood. That's why they're in that field or in that specialty, that they want to be there.
Casey, a trans man, had already had his breasts removed before breast cancer surgery.
Casey, a trans man, had already had his breasts removed before breast cancer surgery.
So it wasn't a fall down on the ground, “Oh, my God, my breasts!” I didn't want them, anyway. I mean, I already got rid of them. So I'm not losing anything. The worst now that they were going to do was take a nipple. I mean [You know, when she does the surgery--and she was really good. She went in through another incision and went under, she did a really good job with the surgery. So, so I didn't lose anything pretty much.
Casey, who is trans, experienced issues with his insurance company.
Casey, who is trans, experienced issues with his insurance company.
They just were all confused over, “What?” Because I told them male, and all my records say female because it has to be. I mean, unless I change it, but I'm still going to because I had female breast cancer. So, it wasn't male breast cancer. It was female breast cancer.
So what was that like, in terms of having to do that, having gone through the transgender kind of surgeries and so forth?
And then—
And then having to switch back?
Oh, it sucked. It sucks because you should, I shouldn’t have had to do that, my opinion. It should have just, but that's a whole gender issue thing. That's a whole another stuff going on. But once I told them, and then it confused them for a little bit. I mean, on the phone, “What? Wait. What? What?”
You said it confused them and it kind of sucked. Was it a morass, or was it a lot of haggling or hassling?
No. No. It was just to tell them. They were confused. Because everything was he, you know. If I had any other appointments prior to this, it was all he and everything else. And then they get the claim for female breast cancer, and they went, “We're denying this.”
So, I had to call them up because they denied it, and that would've been hundreds of thousands of dollars.
Right.
And I was not going to pay hundreds of thousands of dollars. I don't have hundreds of thousands of dollars to pay for this stuff. I mean, I was only halfway into it, and they denied it all, and I went, “Crap.”
Casey coped with cancer by doing his “own thing” and focusing on what made him happy.
Casey coped with cancer by doing his “own thing” and focusing on what made him happy.
I did my own thing. I had fires every night. I went up to the woods. I did my own thing that I needed to do for me.
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It, it took me out of where I was at or what was going on around me. And it just put me in the moment of, oh, sitting outside at night by myself having a fire. I was kind of hanging around the fire and doing stuff or weeding at night, headlamp on. And, I mean, I did all that. My thing was nighttime. There's nobody around. It's still is, there's nobody around. There's nobody to bother you. And it’s, it's you and outside, so that helped me a lot just be in the moment, instead of everything being just so active.
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It, it’s just the peace. It's just, it's peace. It’s, for me, it's fire.
Casey, who is trans, experienced issues with his insurance company.
Casey, who is trans, experienced issues with his insurance company.
They just were all confused over, “What?” Because I told them male, and all my records say female because it has to be. I mean, unless I change it, but I'm still going to because I had female breast cancer. So, it wasn't male breast cancer. It was female breast cancer.
So what was that like, in terms of having to do that, having gone through the transgender kind of surgeries and so forth?
And then—
And then having to switch back?
Oh, it sucked. It sucks because you should, I shouldn’t have had to do that, my opinion. It should have just, but that's a whole gender issue thing. That's a whole another stuff going on. But once I told them, and then it confused them for a little bit. I mean, on the phone, “What? Wait. What? What?”
You said it confused them and it kind of sucked. Was it a morass, or was it a lot of haggling or hassling?
No, it was just to tell them. They were confused. Because everything was he, you know. If I had any other appointments prior to this, it was all he and everything else. And then they get the claim for female breast cancer, and they went, “We're denying this.”
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So, I had to call them up because they denied it, and that would've been hundreds of thousands of dollars.
Right.
And I was not going to pay hundreds of thousands of dollars. I don't have hundreds of thousands of dollars to pay for this stuff. I mean, I was only halfway into it, and they denied it all, and I went, “Crap.”
Casey says he was treated with 100% compassion as a trans man.
Casey says he was treated with 100% compassion as a trans man.
there was not one person ever made me feel uncomfortable, or different, or less than, or anything. There was nothing that they said, did, facial expressions. There was everything is 100-- and I was lucky. I was lucky that I'm not in Podunk. I'm extremely fortunate that our system is as good as it is. And they, that's [um] that’s a part that makes me sad, and then it makes me tear up. And I would tear up any given day because they are fantastic. And that's what gets people through things, the acceptance.
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I was fortunate, which then made me want to be okay with it also because if the people that are treating you for whatever it is, and you're kind of a little off, or, and they're not making you feel uncomfortable about anything, who you are, especially something that extreme, and I think that's extreme. I think a transgender person getting breast cancer, and having the scars, I think that's kind of a big deal to my head. It doesn't cross your desk every day. And then how do we treat it? How do we deal with this person? How do we, and they did it, and they talked amongst themselves because they told me that they did. They were like, “Oh, my God. This must suck for this guy. We have to do whatever we can.” And they did it. And they were nice, and my surgeon was decent. And she did what she could to keep what I paid to get to make me who I am. So [LOCATION] is the best. The clinics, everything, everybody that works there. That's what makes me tear up. It's the compassion.
Casey wishes his friends had asked if breast cancer was “messing up shit” with his gender.
Casey wishes his friends had asked if breast cancer was “messing up shit” with his gender.
I wish they would have asked, "Is it messing up your shit with your gender?" And I don't remember anybody asking me that. They could have, and I could have blocked it. But I don't remember anybody ever, my friends, asking.
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Did you wish that they had?
Yes.
Okay, and why?
Because then I could have explained how I was feeling because, if nobody asks, you can know how you're feeling about anything, but if nobody asks you, if people don't ask you questions, one, how are they going to understand it themselves or educate themselves? And it also helps to explain it to yourself. I mean and understand and get more information even within yourself. “Oh, that's why I was dealing with it like that.” Or, “Oh. That's why I took it certain things light about it. And then I didn't need anyone. ecause you don't know, and sometimes people just asking questions can trigger, or teach yourself, something about yourself. And then. So, I wish, yeah.
Casey was supported by the friends who are his family of choice.
Casey was supported by the friends who are his family of choice.
My parents are deceased. I don't really talk to my older sister. My younger sister, I talk to once a month. I can talk to her about stuff, but she lives in [LOCATION]. and I didn't want her to be here. There was no point for her to be here. My friends are my family. If I needed to talk about it, they would listen. They kind of played off what I. wanted to do about it, or talk about it, or not, which is, I think, really helpful.
Casey says he has to reinvent himself now.
Casey says he has to reinvent himself now.
But you have to move on. I mean, you can't just, “Oh, I had cancer.” “Oh, what are you doing? What did you do the last couple of years?” “Oh, I had cancer.” You know, you can't just keep using that as a, how it defines you because it didn't define me. I mean, it did at the time. But it didn't really. I don't know. Now it's something that I had. And now I just have to figure out, because I became recluse, like I said. I needed to. I didn't want other people's crap or pity. I didn't want to, I did my own thing. I had fires every night. I went up to the woods. I did my own thing that I needed to do for me. And now that I don't have that anymore, you kind of have to now reinvent yourself because that define, that took so much control. I think when people are going through it, it takes so much control, and it takes so much energy, that you do have to put things on the back burner because you have a choice. And you can't, and then, like I said, when it's done, and you're just kind of, “All right. Now what do I do?”
Casey says there is no group for transgender men with breast cancer.
Casey says there is no group for transgender men with breast cancer.
Even if I needed to or wanted to, I couldn't go to just the breast cancer. It's all women. They're not going to understand and I'm not going to understand. I mean, you can do the support thing but it's-, I mean, women understand women. Men understand a prostate. And, you know, that kind of, it's a group. It’s, they're all understanding the same thing, or the grieving, or whatever it is that you're there for, therapy or group therapy, but there's not. And then, especially in the transgender community, there's nothing. There's no support things for any kind of cancer, so where do you? And they were like, “Oh, well go to a men's then.” Well, I mean, they're not going to understand where I'm coming from. I mean, you can tell your story, but that's all it is - it's a story. It's not something that you can relate to. It's just me going there and telling it. So, that was dumb in my head.
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I think the support thing in the LBGT community, there's not a lot of support for a lot of different things. And that's too bad because still human, still have the same problems, still have the same issues. There's just not. So I did it all on my own. And I had to.
Casey explains why getting “a woman’s cancer” does not change his transgender identity.
Casey explains why getting “a woman’s cancer” does not change his transgender identity.
I have a woman's cancer. I'm not a woman. How did I get a woman's cancer? Now you can start going into, if you're not that strong, you could go into another weird, ugly place. That this is my last drive. I went through this all my life. And now I have women’s, a female cancer that could, could not, kill me. Who am I now? Am I, so I am still a woman? But I don't define [myself that way], you could go into a really weird place. And I could see it happening. They just have to understand that it's not, and, it's also educating the medical field, to let them know that you're still the same person. You're still transgender.
Casey wants clinicians to understand what it’s like for a transgender man to have breast cancer.
Casey wants clinicians to understand what it’s like for a transgender man to have breast cancer.
It doesn't make you a woman. And it's okay because it does, a lot, some people could go into it, that, like myself, and go into it of, “Great. I have breast, I have a girl's cancer thing. I have a girl’s cancer. I have a woman's cancer. I'm not a woman. How did I get a woman's cancer?” Now you can start going into, if you're not that strong, you could go into another weird, ugly place. That this is my last drive. I went through this all my life. And now I have women’s, a female cancer that could, could not kill me. Who am I now? Am I. So I am still a woman. But I don't define. You could go into a really weird place. And I could see it happening. They just have to understand that it's not. And it's also educating the medical field, to let them know that it's still, you're still the same person. You're still transgender. You're still the man that you want to be or the woman that you want to be, you know? What about transgender women? They get testicle cancer because they have, they've chosen not to remove that part. And now they get that, and they're in dresses. And they're, I mean, it's the same thing. Something that you're not, that you don't believe you are. And then you get it. So, I think the physicians and medical folks should be trained on that.