Alex: Top surgery and cancer
In this episode of the Top Surgery Podcast Ioannis Ntanos (he/him) shines a light on the story of returning guest Alex (he/him), who received a suspected cancer diagnosis during his top surgery consultation. Together, they discuss what happened next and what the outcomes were for Alex as he navigated this final hurdle on his journey to accessing his long-awaited gender affirming care.
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Welcome to the Top Surgery podcast. My name is Ioannis Ntanos. I'm a specialist top surgeon, working with trans-masculine, non-binary, and gender non-conforming individuals. I'm also an ethicist and a trans ally. In this podcast, I will be discussing gender affirming care with a range of guests from those who have experienced top surgery firsthand to experts and ethicists with an interest in the challenges posed by this underserved area of medicine. I hope you will join me in learning more about this fascinating topic.
Former podcast guest Alex returns for a second episode. This time, he shares his experiences of receiving a cancer diagnosis during his consultation and what the implications were for his top surgery.
Thank you for joining us again, Alex, following our previous session. It's really lovely to have you back with us today talking about your experiences of going through top surgery. This session is slightly different because we know that when you first met Mr. Ntanos and you had your consultation, you had a surprising discovery, let's say. I just wondered if you could chat us through what happened at that consult.
Yeah, so I'd gone to see Ioannis face-to-face in Manchester with some anxiety in case he said no, but I was in a reasonably good place, and I felt I had a good case to put. Anyway, we got on really, really well and he asked me lots of questions. I think I might have asked him a few, but the conversation was very relaxed. I remember him saying to me he would do it, and I was absolutely over the moon, so I can get quite emotional about this point. And then it got to the physical examination, which I wasn't the least bit worried about. I mean, I'd lived with what I came to describe as two very large skin tags that needed removing, and many doctors had examined me over the years. So, you know, I knew that this was just something that had to be done.
So, I'm sitting on the couch and totally comfortable, you know, I see myself as male. I was sitting in a consulting room of another man. There was no sense of any anxiety about that. And he suddenly asked me, how long had this pucker? I said, what pucker? And he felt around a bit more. And he said, well, there's a pucker and a lump. I don’t know what I saw to that point, I think I said I didn't know it was there. And that's partly because I only have a face mirror in the house. I got rid of all other mirrors. It was out of sight from looking down. I'd had some changes both sides since increasing my testosterone dose. So it would occasionally go hard or soft. And I wasn't particularly bothered about it. So my first thought was, is this gonna stop me having top surgery?
And this is what it's been like all the way along. My ultimate goal was to have it done. Nothing was gonna get in the way for me to be able to live as a man how I wanted to and to be recognized as a man. Anyway, so I got dressed when sat back at the desk and Ioannis started talking me through about what he'd found and what the implications might be and what could be done and what couldn't be done. And it was all sort of quite overwhelming actually. And I just felt this high that I'd got before I was examined, suddenly became a real big low until the point where he said that, should we get a date in the diary? And I thought, he's still gonna do it, somehow he's still gonna do it. So anyway, we sort of talked through a few more things. I can't remember it all now.
I think that feels like the perfect moment to bring Ioannis in and have him talk us through, while you just regroup a second Alex. Ioannis, do you want to talk us through kind of what you found and kind of where that led you in terms of your thought process in relation to the surgery that was planned?
Yes. Well, part of the planning and operation for top surgery, for everyone who's above the age of 40, is to have a mammogram. And sometimes I will, if I'm reviewing a 20-year-old, I will happily examine them on the day of the admission instead of in advance. But I don't do that for anyone who's above the age of 40 because I'll need to see the mammograms. And occasionally there might be some findings that could significantly affect the operating plan. And that was the case with Alex. So during the clinical examination, there were some suspicious features for something significant on the chest. And well, first of all, fortunately, I do have a breast surgical background and that did come handy on the day, to be able to pretty fast recognize what was happening on the chest and then take it from there.
But as correctly Alex said, I didn't have a diagnosis. I knew something was happening, but I was happy to offer a date for the operation pending all the investigations and what the outcome might turn out to be because we were meeting there to make a plan for top surgery for Alex. And it wouldn't make any sense just to completely disrupt that plan, that journey, to discuss something else. But I thought, I don't know if Alex remembers, I thought I'd made it very clear that I was really concerned about the findings on the chest.
Yeah, I absolutely went away knowing what was gonna be found. Yeah.
Okay. But life didn't stop there. And our interaction did not stop there either. So, there were things that we had to be done. And what I suggested first is that you should urgently get an appointment with your GP and be referred to your geographically closer breast unit to have, first of all, a mammogram. Is that correct?
So, what happened after that? Can you let us know what happened?
Yes, because I don't use the phone, I sent in an eConsult the next morning, as soon as it opened at eight o'clock. And, I knew my GP wasn't working that day, it was a Thursday, but I expected she'd be in on the Friday. So I'd also put a note in there saying, could I possibly talk to her? I was going off to a meeting and knew I wouldn't be free until lunchtime. And I got a text from the surgery halfway through this meeting saying this was all very out of order, to do it by eConsult, and by you. And we need, I think I probably said at the time, we need Mr. Ntanos to contact us. Ioannis had given me his WhatsApp the night before, so it was a quick with over a message, help surgery, want to talk to you.
And he very kindly got straight onto it. And then later on that day, I still hadn't heard back from them. I still didn't know my GP was on holiday. Nobody offered me an appointment. And I ended up going in with a friend at the end of the day to see the practice manager and said, please tell me what's going on. And supposedly there was documents behind the desk, but they weren't all there for the referral. I didn't know, I mean, I knew where I was being referred to, but I didn't know what they'd been told. So it was a really hard 48 hours of trying to process what was going on without any medical support. But then I did get a message with an appointment, which was, well. I saw Ioannis on the 27th and I got the appointment at the clinic on the fourth, so I didn't have to wait too long.
How was the process of navigating the cancer diagnosis through the, the NHS as a trans man? Can you tell us a little bit of what…
Bit of a nightmare.
Yeah, can you talk us through a little bit whether or not there was any provision for the fact that you were trans, whether you were going in as a man and the way that they interacted with you and how was that process?
It was a bit of a nightmare. Quite traumatic actually. When looking at the questions that you sent me for me to have an idea what you're gonna ask me today, it was actually, I had to leave that one until last, because I just had I'd get to it and no, no, no, I can't do it at the moment. I can't do it at the moment. So it's still left its mark. I turned up at the breast clinic and I sat on pink chairs. It turned out I was their first trans patient and we had conversations. I had various tests, so I had the mammogram, the person that did that, she was really lovely and that was a totally comfortable experience. That was my first ever mammogram and didn't feel at all dysphoric.
And I had a biopsy and an ultrasound and a couple of sessions with a doctor both at the beginning and then the end of that process. And I was then sent home and waiting for the results to come through and I'm sent and the appointment with the consultant oncologist. And what complicated it all as well was in April last year, I'd approached my GP surgery about getting the gender marker changed or my medical records. And yes, COVID was going on and I didn't think it would happen in a hurry, but we'd got to August this year and it was still being a problem. So, I'd approached my MP to say, please, can you chase this up? By this time, it was primary care support England that were causing the problem. They'd had it from my GP since last December. These things happened in life.
They decided to change it the day after I'd been to the clinic to get my diagnosis. So, I contacted the clinic and said there could be some problems here because my medical records is about to change. I'll get a new NHS number, new record and it will be totally blank. So that was saying that was just an added complication. So when I saw the oncologist, she made it clear that I was her first trans patient and that she wasn't overly clear what top surgery involved. She said she could offer me a simple double mastectomy. And I said, that's not what I want. So I had to advocate quite hard as to what I did want and what I wasn't going to accept. I mean, they were perfectly happy to operate on both sides rather than leave me with one side operated on and the other side not so that was a plus, but it really was that I was facing having scars that looked very female, which in my opinion would be worse than actually having a large chest, because it was like once that was done, it felt like there'd be nowhere to go. So I had an MRI scan, that wasn't a particularly good experience from a dysphoria point of view with somebody who really should have handled being asked to gender me correctly better. So yeah, I went back to see the consultant and my records were all in a mess. She thought she hadn't got the results and found them by chance because we were looking for something else. Cause they were at that point running two records. So, we talked about coming in for surgery, I asked what ward I would, um, be put on and they just assumed that I'd be put on the wall that women who are going through breast cancer surgery would go on. There might be a possibility of a side room, but they couldn't guarantee it.
And I was just, no, no way, you know, what do the men do? And because I live alone then, I had no one to stay. I don't have the facilities for somebody to stay. I had to stay in for 24 hours. So I said, what do the men do? Well, they get sent home on the same day. So, she said we could look into it. She said, there may be a policy and if there isn't, there should be. So anyway, a couple of days later, I got an email from one of the nurses to say that they would be able to put me on a mixed gender ward when I came round from surgery.
Highly traumatic, as you said. Ioannis, I wondered if you could talk us through kind of, Alex touched on the difference between mastectomy and top surgery in terms of, I guess the aesthetic. I wondered if you might be able to talk us through that a little bit. The kind of differences.
Yeah, well being diagnosed and treated with breast cancer is not mutually exclusive with having top surgery in an aesthetically pleasing way. But you need to take in consideration both. And you need to find a surgeon, actually a surgical team that is familiar with both. And that's not easy. I mean, Alex just said, he was the first trans man that that specific hospital was viewing and was planning a treatment for and that can cause a lot of distress. From the pink chairs and the pink curtains and the pink gowns to the correct using of pronouns to the planning, to all the discussions. It's not an easy task. Aesthetically what you need to do is to listen to the patient, listen to what they need to, they want for themselves and see if you can accommodate it. And if not, if you can bring someone in the team to help you with that aspect. And if with goodwill everything can happen and I'm in goodwill from all parties that are involved in treating such a unique case.
I'm interested in, for the untrained listener who might think, well, a double mastectomy would solve the problem. I wondered if you could kind of expand a little bit on the actual aesthetic differences. Because Alex talked about the scar and how it is very, you know, identifiable for what it is.
Yeah, well before talking about the scar, what we're trying to achieve in top surgery is different than what we are generally trying to achieve when we're doing a mastectomy for a cancer treatment. And that is because with top surgery in a trans-masculine individual, we try to obtain a masculine projection on the chest and that is completely omitted when we're discussing about a mastectomy for a breast cancer, the placement of the scars is equally important and the getting it right with the first try is important as well. So, trying to minimize the need, the risk of a revision is also important as well. And sometimes you have to compromise, sometimes you don't. I mean, you have to accept what your limitations are and discuss all this with a patient in advance. If all this in place, you can achieve a fairly good outcome indifferent of the cancer diagnosis. But yes, the position of the scaring is different. The projection of the chest is different and to be honest, what a gender affirming surgeon can offer in the entire pathway of such a patient makes a difference as well.
Alex, I wondered if you could talk us through what your aesthetic expectations were from the surgery. What was it that you were hoping to achieve? Did you have a particular outcome in mind?
So yeah, before I actually saw Ioannis and we had the little blip with the lump. I wanted a male looking chest, I wanted male looking nipples. I knew with my BMI and age that I wasn't going to be looking at having a six-pack body. I'd described that I'd be perfectly happy with a dab bod. I spend a lot of time in the swimming pool and there's other guys in there, so I know what does not looks realistic at my age and weight. But yeah, it had to look male. That was the key thing.
And how were those expectations impacted by the diagnosis?
The only thing that I think really stood out was that I couldn't have the nipples and I didn't have to worry about it for too long because Ioannis said, well you could have some tattooed on later. And when I got home, I went and researched some of that and I actually seen a couple of guys with tattooed nipples, so it's not something that's particularly upset me. The scar placement was more, more important to me on the morning of the surgery when Ioannis came to see me before I went down, he explained that I may end up having a scar that went all the way across. He'd already told me that all the breast tissue would have to be removed. But he thought that with my body habitus, I loved that expression, that I still wouldn't look totally flat so I just accepted it.
I was getting the surgery, I was going to have a flat chest if I had clothes on, no one would know what was underneath. And as long as I didn't have those awful female scars then I was fine about it. So, when the dressings came off two weeks after surgery, I was absolutely over the moon that I'd got a gap between both incisions. Going back to Reddit again, I hadn't found the top surgery group until after I'd had the surgery. But loads and loads of photos on there, guys posts and I've posted on there as well and got some really good compliments and I've seen loads of guys who you wouldn't know that their surgery was any different to mine.
I think what you said earlier about sitting in the room, being given the news, or the suspected news, and your focus just being 100% on the surgery as being so important to you. I just think that that kind of speaks volumes in terms of just how important that that was.
Oh, very much.
Yeah, because having, having a cancer diagnosis, often that's all that fills your head, but the fact that you are in that room and actually your focus was, well, what's going to happen with my top surgery? I just think it'd be really interesting to kind of just touch a little bit on that, if you don't mind, and just kind of understand what was going through your mind in terms of the cancer side of things. Because I know obviously you've talked about the top surgery side of things and your transition and how vital that was to be able to transition. But how did you kind of feel when Ioannis was talking about the possibility of it being cancer?
I've never had a fear of cancer. I know I'm quite weird in this and I have to watch who I have these conversations with cause sometimes people get stressed or they go silent or whatever. For me it's quality and not quantity. It didn't bother me that I'd got a cancer diagnosis. I was just totally and utterly focused that whatever time I'd got left, I was gonna live it as a man. You know, outwardly presenting man. And in fact I do still have cancer because I wouldn't let them do the auxiliary node clearance for one node that had shown up on the scan, because there was the potential for lymphedema and I had problems with my right arm anyway and it had the potential to affect my quality of life. I need to drive. So it's gonna be, well, you know, I'm gonna just get on and live my life with the time I've got left as me.
So, what advice would you give to somebody who might be avoiding getting screened, other trans men or other non-binary individuals who might be avoiding getting screened for fear that a cancer diagnosis might prevent them from accessing top surgery?
Well, I'm proof that it's not, if you've got the right surgeon who's willing to be flexible. Something that I should have said earlier was that Ioannis was very open from the start to working with the oncologist at my local hospital to give me the results that I wanted. And she was brilliant as well because she was absolutely up for this and that surprised me actually. But yeah, there's a way around it and I knew I was gonna have to have a mammogram at some point. There's various reasons why I've never had one and I'd done some research through somebody I know who works for the breast screening service as to how I went about doing that. And there's breast cancer in the family. So, you know, there's always a possibility that it could be there that you just gotta go for these things if, you know, if you really want to do something, then you go for it.
On that point, having waited so long and having lived for so long with gender dysphoria and having had your top surgery, how has that impacted you in the short weeks since having the surgery? Can you talk us a little bit about how that's made you feel.
I would say probably within a couple of weeks my brain had caught up with the fact that my chest was flat and I'd already made the decision that as soon as I'd had the surgery I was gonna stop shaving because I'd been shaving for quite a long time and I wasn't sure what sort of beard I'd grow, but I said to Ioannis when I saw him, when he said to me about, you know, what, what are the things you want from this? I said, well, I want a beard like yours. I haven't got there yet, but I mean it's, you know, not bad for, I don’t know, just over two months.
But it's, it's so much the opposite to, you know, if you've got a female chest, that is the main thing that people see that a guy doesn't have. Okay. You do see the occasional woman with a beard, but a beard is very much a male symbol. And I started getting called sir quite quickly by people that didn't know me as soon as it was obvious. And that was good. People that have known for a while have been much better at calling me he and him. So yeah, I just feel much more comfortable.
Ioannis what advice would you give to people who might be worried that there may be something that will stop them from being able to access the top surgery, whether that's BMI, whether that's something that hasn't been diagnosed. Is there anything that you could sort of say to, to kind of help them at all?
Well, apart, apart from the cliche of everything is a compromise. Okay. I would say suggest that they do the research, that they might be surprised of what they can find and on what is on offer. And with proper research and with people that are flexible, everything is possible. I was extremely accommodated by the NHS Trust where Alex had his operation. I was offered an honorary contract. I was there to operate on the day in the presence and the assistance of the oncologist and consultant breast surgeon. It's been a great experience for me to be able to share my skills with someone that has never seen such a case before. And I'm really pleased that Alex ultimately had a good experience as well. Which is we should all, all of us aiming for. So don't think, don't presume anything, ask and you will be answered. Do your research and who knows what you will find. I would like to ask Alex if you found or was, how difficult was it for you to find some group support for trans men that were diagnosed with a breast cancer prior to their top surgery?
Virtually non-existent. I know I live in a rural area and it's hard to find a trans anybody. So, I had ventured out into the wilds of Bradford earlier on. There were older trans women, but the trans guys were teenagers in their twenties. So yeah, I've sort of come to expect that they probably don't even exist a lot. From what I hear on the Reddit forum for the over fifties, I think I'm the oldest on there, most of them are out in the States or in Canada. I think due to the fact that, you know, I was telling in my story that at my age it wasn't something that was ever even known about in general, that people had just not been exposed to the idea and tomboys were, you know, just an acceptable way of being.
Is there anything else, Ioannis, that you would like to share that we haven't covered that you think would be important to mention?
The, the only thing I would like to mention is for colleagues who might be interested in listening to this discussion that no one expects every breast surgeon to be familiar with top surgery. But if they are interested, there are resources, they should reach out and we should all together try to demystify what top surgery, what trans healthcare is, and it'll be for the benefit of ourselves, of our patients and hopefully for the broader community too.
Can I just add something to that?
The oncologist at my local hospital was very keen to learn and had talked about trying to get it on the agenda of a breast cancer surgeon's conference next year. If she could. I've not heard anything back that's possibly about my telling my story, but I have not heard anything. But yeah, they wanted to learn. The nurse from the breast screening had been very supportive and had found me what appears to be the only LGBTQ cancer charity in the UK, and they have various training materials and my hospital were keen to see those and potentially look at some undertaking, some training.
Can I just start that? I got exposed to that group through Alex too and there is a link for that group on the website too.
I hope you enjoyed this episode of the Top Surgery podcast. Please subscribe and leave us a rating in the review. You can connect with me on LinkedIn and Instagram at Ioannis Ntanos. To find out more about top surgery, visit Ioannisntanos.com