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Upfront About Breast Cancer Podcast

Episode 12: Sofi Leota on breast cancer at 23

Every day, two women aged between 20 and 39 will be diagnosed with breast cancer. In 2018, Sofi Leota was one of these women, receiving a diagnosis at age 23. In this episode of Upfront About Breast Cancer, host Kellie Curtain talks to Sofi about fertility, losing your hair, connecting with other young women with breast cancer on social media and the challenges of being diagnosed with breast cancer at a young age. 

RESOURCES:

Upfront About Breast Cancer is a production of Breast Cancer Network Australia. Our theme music is by the late Tara Simmons, and this episode is proudly brought to you by the Dry July Foundation.

Want to get in touch? Visit our website at bcna.org.au, email us at contact@bcna.org.au, or call our Helpline on 1800 500 258.

TRANSCRIPT 

Kellie Curtain [00:00:03] Let's be upfront about breast cancer in young women. So what's "young"? Well in breast cancer speak, it's women aged between 20 and 39. And around two Australian women in this age group are diagnosed every day with the disease. And typically the cancer is more aggressive because the tumors are more likely to be larger. Now the number of young women with breast cancer is not on the rise but the number of those being diagnosed is which is encouraging because it means more breast aware and checking themselves. BCNA regularly talks with young women at forums and conferences around the country. These events are a real opportunity to hear about the different challenges that younger women face compared with older women. Some of the challenges that they share with us include career, fertility, body image and premature menopause. To chat about her experience is Sofi Leota, who was diagnosed with stage three breast cancer at age 23. Welcome Sofi.

Sofi Leota [00:01:04] Thank you for having me.

Kellie Curtain [00:01:06] Tell us how you found the lump.

Sofi Leota [00:01:11] So it was just by chance it was completely random. I was just at home just on a weekday as watching TV and I was lying down I just so happened to I guess stroke the side of my right breast. I don't know whether I was reaching up or I don't know. It was just completely at random and I felt it almost automatically was about it. It was like a seven o'clock position. So on the side on the bottom there. And yeah it was as hard as a golf ball. It was quite large. I'd never felt before. I don't know how long it had been there, whether it was a while or the last couple of days so I went over to my boyfriend straight away and he'd never noticed it. So yeah automatically that night I booked in to see my GP the next day because it just didn't feel right.

Kellie Curtain [00:02:08] Twenty three is actually very young to be diagnosed with breast cancer. Can you take us through some of the emotions that you felt?

Sofi Leota [00:02:17] Oh there was a roller coaster of them and it was kind of like going back and forth with certain emotions. At the beginning it was a lot of denial and just disbelief.

Kellie Curtain [00:02:29] Just cause you didn't think it was possible at the age of 23?

Sofi Leota [00:02:32] Yeah. And I just I thought I was in a really great place in life was you know going good. I just got a promotion at work and you know I was living it. It was yeah. Things were just fine I just thought no. Like there's no way, no one of my family's ever had it. My Mum's never had it. I'm too young. So yeah a lot of disbelief at the beginning and also confusion as well because of all the information I was now receiving and being told. Yeah it was a lot to take in.

Kellie Curtain [00:03:05] And I'd imagine it would have been quite scary too.

Sofi Leota [00:03:08] Very.

Kellie Curtain [00:03:08] Did you know what it actually meant especially with so much to look forward to.

Sofi Leota [00:03:13] Yeah it was definitely really scary. All of a sudden everything I kind of planned just seemed like a blur. It was kind of uncertain like I just didn't know what my future was gonna be like. Yeah it was really scary and this fear of the unknown as well. You know you hear cancer and you automatically think of someone who's really sick and someone who's frail. As someone who is so young I haven't ever been exposed to that kind of world. I've never really been around cancer. Yeah it was the fear of the unknown. Yeah crazy.

Kellie Curtain [00:03:54] So it was a stage three breast cancer and that required a single mastectomy?

Sofi Leota [00:04:01] Yes.

Kellie Curtain [00:04:02] And some fairly harsh treatment?

Sofi Leota [00:04:06] Yeah yeah. So a single mastectomy and the cancer had obviously spread to my lymph nodes. So I then had the lymph node removal a couple of weeks later. So full axillary clearance on my right side. And before I started chemo my surgeon actually had actually suggested I did some egg retrieval so two rounds of IVF to preserve my eggs.

Kellie Curtain [00:04:32] Had you actually thought about children at twenty three? All of a sudden you're faced with having to think about oh do I want to have children and maybe I might not be able to. And it's a discussion all of a sudden that's thrust upon you.

Sofi Leota [00:04:44] Yeah well I mean I've been with my partner now for nearly eight years so there was kind of some talk about children like I knew one day I definitely did want to have kids but I never thought about the possibility of not being able to have kids. So that came as a huge shock and I'm very very grateful I had that opportunity to be able to preserve my eggs.

Kellie Curtain [00:05:09] So you under you underwent fertility treatment? What was that process?

Sofi Leota [00:05:12] It was quite straightforward. So I did two rounds...  a lot of people only get the chance to do one. So I was on hormones and they were monitoring the eggs until they were big enough and then going under and doing the retrieval. So yeah I was very fortunate to be able to do that and they were successful as well. So I do have some eggs and embryos frozen for safekeeping. So yeah that that was the IVF and that was about a three to four week period before I started chemo.

Kellie Curtain [00:05:52] Okay. So you required 16 rounds of chemo which is quite brutal isn't it? Tell us how you coped with that?

Sofi Leota [00:06:03] Well when I first been diagnosed that was what I was most scared about going through chemo.The first thing that came to my mind was losing my hair because that's automatically kind of what you think about. Yes. Sixteen rounds it was. It was really harsh. Especially the first four rounds I did that fortnightly. So that was over an eight week period.

Kellie Curtain [00:06:25] What was harsh about it?

Sofi Leota [00:06:28] Everything. The physical changes, mental. I was sick. I lost my hair sixteen days after my first one.

Kellie Curtain [00:06:41] For someone for anyone I think for any woman losing their hair is emotional.

Sofi Leota [00:06:46] Yes.

Kellie Curtain [00:06:47] For someone so young.  When it came out so quickly was that really distressing?

Sofi Leota [00:06:59] Yeah. It was heartbreaking. It literally broke my heart.

Kellie Curtain [00:07:08] Even though you were told it was going to happen?

Sofi Leota [00:07:11] Yeah. Oh I think my doctor even said at one point oh there's a chance it might not, for some people it doesn't. And I just I kind of held onto that a little bit. And then when it started I'm like "oh my God it's happening". It was really really heartbreaking.

Kellie Curtain [00:07:24] Was that perhaps the real trigger of oh my gosh this is really happening?

Sofi Leota [00:07:32] Yes. So beforehand I had the surgeries and the IVF but as soon as that started happening I'm like okay. This is real like it's gonna be a tough couple of months. And yeah that was 16 days after I'd had my very first one and I was still in for another full four months, three or four months of chemo. So yeah it was.

Kellie Curtain [00:07:59] What were you doing with your days over that period? How did you get through those days?

Sofi Leota [00:08:08] I was fortunate enough to be able to rest. For the first week I was sick I couldn't leave the house so it was a lot of Netflix and a lot of reading and also blogging as well which I really got into.

Kellie Curtain [00:08:30] Did that help you. Do you think?

Sofi Leota [00:08:32] Oh immensely.

Kellie Curtain [00:08:33] In what way?

Sofi Leota [00:08:33]  It was just a release of building up you know emotions and feelings instead of holding it in and getting angry and feeling a certain type of way about certain things I was able to put it out on paper and reflect on it. And then as I went along I could read back on how I used to feel and see how far I'd kind of come. Yeah it was a good release for me. I know every time I'd kind of complain or talk to my boyfriend about something he'd be like go write a blog go write about it because he knew as well it was it was a really good release for me and the way for me to let out my emotions.

Kellie Curtain [00:09:10] As well as a release for you, did it help those that you love and those who were in contact with you better understand?

Sofi Leota [00:09:18] I think so yeah. Yeah. For the people close to me. Yeah it was it was nice for them. For them it was because I couldn't always explain exactly how I was feeling and you know explaining something 30 different times to different people gets exhausting. So that was also really good to have that and for them to just relate and be like Okay this is how she's feeling. Just also strangers. I had so many people reach out and just say they related to exactly what I said and it just blew my mind that other people have had the same experiences and felt the same way.

Kellie Curtain [00:09:56] Other young women? Have you been able to connect with other young women? Because quite often we hear that part of the problem is that they don't know anyone in their age group that has had breast cancer.

Sofi Leota [00:10:10] Yeah. I think if it wasn't for social media I wouldn't have been able to connect in my blog. I wouldn't have been able to connect with other young women. I think that's how they found me and I'd also found them. So yeah as I said if it wasn't for social media and my blog I wouldn't have had that opportunity because my local hospital where I was going there was no one who was young. I was the youngest that was there.

Kellie Curtain [00:10:32] By a long stretch?

Sofi Leota [00:10:35] From what I'd seen yes.

Kellie Curtain [00:10:38] As we know you face different challenges like you are thinking about fertility and careers and other aspects just on the social media aspect. I notice that you've posted quite a few photos. So with the distressing loss of your hair you obviously owned it and you posted that sort of stuff. Where was the shift?

Sofi Leota [00:11:08] I don't know. I think it was I just knew that I wasn't going to get used to it any other way than other to own it and be confident about it and just know that it was temporary. Also for me I think another reason why is because I didn't want to see someone on the street one day and they'd be like 'oh' and get a bit of a shock. So them seeing it on social media that got the shock out of the way. I don't know how this sounds but just sharing that and getting you know such positive comments and not feedback but just compliments from people would just really made me feel better and just yeah it really built my confidence and sharing my story and being able to help other people as well inspire other people made me feel really really good.

Kellie Curtain [00:12:01] What was some of the really tough side effects? Did you suffer fatigue? What was possibly debilitating for you?

Sofi Leota [00:12:11] Well so with the first four rounds of chemo that was harder than the remaining 12. So with that I had the nausea and the fatigue was huge especially for the first week post treatment. I had a bit of reflux but Yeah I'd say the fatigue and the nausea those were the worst. And then after the first four rounds it finished and the remaining twelve of Taxol it was the fatigue. Yeah definitely the fatigue.

Kellie Curtain [00:12:41] And following that was the radiation that was also fairly brutal on you?

Sofi Leota [00:12:46] It was. Yeah. I think I in comparison to whatever I've read other stories I feel like I had it fairly easy in comparison to others.

Kellie Curtain [00:13:00] Despite having scarring because of burns?

Sofi Leota [00:13:04] I do. Yeah. Yep. So throughout treatment it was it was fairly good and then it wasn't till the end. It really kind of burnt up and twisted and burned and so yeah that wasn't until treatment actually ended or the last week of it had gotten really bad. Yeah and that was that was horrible. I definitely didn't expect it. I thought I'd gotten away with it and that I wasn't going to get any of the side effects but obviously I did.

Kellie Curtain [00:13:32] Throughout the process. Did you feel confident to ask questions? Was there enough information out there? Did you feel informed? Did your medical team communicate well with each other? Is there any sort of tips that you've got for someone else that you know might lead them better through the process?

Sofi Leota [00:13:56] I definitely get a lot more confident towards the end. I was very fortunate to have a really great oncology team and a team of doctors and nurses around me. As well as personal support I think the best advice I could given the thing that helped me the most was taking people to appointments with me. Especially my Mum. So I know I know at the beginning there was things that I would discuss beforehand that I'd forget about the appointment and she'd bring up while in there and then the hard questions she would ask that I couldn't. So definitely having somebody go along to things with you helps a lot.

Kellie Curtain [00:14:36] And do you find the information that BCNA has on the website. We've got an online tool and the helpline. Has that been helpful to you?

Sofi Leota [00:14:46] Yeah. Yeah. So I first kind of realised BCNA through all the information kits and pamphlets in the brochures I was given at my first initial appointments. Like dealing with breast cancer and how your family can deal with breast cancer. That's how I really came to know of BCNA and those information kits and brochures really helped me a lot. It was really a lot going to to appointments and hearing all these different words and jargon and slangs and walking out kind of confused and being like okay what did she just say?. So it was really amazing to go home sit down and go through those booklets and actually properly read it and understand what was happening and what what I was about to go through.

Kellie Curtain [00:15:34] So quite a few months on now and you're planning a reconstruction?

Sofi Leota [00:15:41] Yes. Yep. So I don't know too much about it at the moment. I will see my surgeon next month and she'll give me some more info. All I know is I have to wait a year from finishing radiation which was on January the 8th of this year. So yeah next year some time which I'm really excited about.

Kellie Curtain [00:15:59] Yeah. Is that Is that something that's really important to you?

Sofi Leota [00:16:02] Yeah yeah absolutely. It doesn't really bother me too much at the moment having the one boob. But you know it definitely excites me. It's definitely something that is is really important.

Kellie Curtain [00:16:27] So how do both the the physical change and the physical effects of your treatment. How's that affected your relationship?

Sofi Leota [00:16:42] It did in the positive way it brought us a lot closer... My personal relationship with my partner. Yeah it brought us a lot closer together. Even with fFriends and family around me. But yeah in my relationship definitely brought us together. At first I was really hesitant and really scared that it wouldn't.

Kellie Curtain [00:17:01] Yeah.

Sofi Leota [00:17:03] When making this decision for the mastectomy I was I just I kept asking like "Are you sure you won't care?".

Kellie Curtain [00:17:10] And what was some of the fears that you had in relation to your relationship and how it might affect that?

Sofi Leota [00:17:16] That he just might change the way he looked at me and he'd think I was not as gorgeous as before or just very soon you know a superficial kind of things but just very silly thoughts and I look back because he's he's incredible and he did put all those fears to rest. You know I didn't know what I was gonna look like when I lost all my hair and you lose a boob and as a woman those two things are a huge in a physical sense.

Kellie Curtain [00:17:46] How did he take it? That must've been scary for him too? Did you have an open discussion about it? Was it a real team effort?

Sofi Leota [00:17:55] Yeah. Yeah it was he was a huge support. Yeah I was very lucky to be able to have those open conversations with him and for him to give me his opinion on whatever might have been.

Kellie Curtain [00:18:10] Because one of the taboo subjects which young women tell us about is the change in sexuality and stuff like that. And some of the side effects and how just not really feeling like being intimate because of treatment. And that is a real fear. You've obviously been in a long term relationship but still you haven't been married for 30 years and post children. It's still a very important part of a relationship.

Sofi Leota [00:18:40] That didn't. I don't know why but that didn't really cross my mind.  It didn't really bother to think anything intimate at the time I just you know I couldn't I didn't actually really think about the effect that would have had on us. For some reason you know he was fantastic.

Kellie Curtain [00:18:59] So we've talked about the physical effects. What is some of the worries that you continue to have like the do you have fear of it returning? What are some of the worries that you think might be different for a young woman versus an older one?

Sofi Leota [00:19:16] There is a fear of returning but just it's more in a sense if I don't do this if I don't change a certain you know certain aspects of my life it will return and so that's now on me to obviously make those changes which I'm I'm really working hard to do and I want to make sure I do. Other than that I don't really have any other fears, I'm feeling very confident. I'm really honestly loving life at the moment it's given me a new lease on life. So if anything I'm feeling the opposite of scared. I'm feeling very ready and pumped for life.

Kellie Curtain [00:19:52] And you've returned to to work even while you were still undergoing some treatment. Does that mean that you were obviously feeling well enough? Did you stop work? Can you tell us how it's affected your career at all?

Sofi Leota [00:20:05] Yes. So just before I'd been diagnosed I'd just gotten a promotion at work. So I was working full time. After about two weeks after being diagnosed I'd stopped working completely. I'm sorry. No the same week I stopped working completely. And I actually didn't go back for a good seven months or so. So I was very fortunate to be able to have stopped working and know a lot of people don't have that opportunity. And yet when I did start back I was just about to start radiation. So it was um. It was a bit tough on the body. I'm lucky work was quite flexible and they were understanding what was happening so if I couldn't make a shift that was completely fine. But yeah it was really good to get back to work and it's getting a bit of independence back financially and just getting out and doing my own thing again. Yeah I'm still at the same place and I'm looking at getting back into full time work. If my body can handle it if I can.

Kellie Curtain [00:21:09] So are you finding that you have to go slower? What are some of the adjustments that you've had to make?

Sofi Leota [00:21:14] Yeah. Having naps before a big night out. Small things like that. Just not being out all day and all night and working four days a week. Where I currently am is quite a lot for me at the moment. So you know the small things is just taking it easy and not being so on the go all the time.

Kellie Curtain [00:21:40] Yeah. So as you've connected with other young women what are some of the things that you've shared? What is the common grounds that you've experienced?

Sofi Leota [00:21:51] I know a lot of it was the hair loss and the fear of all the physical changes. Also the menopause thing is it's you know the hot flushes and the just all the changes that happen.

Kellie Curtain [00:22:07] So have you with premature menopause? Are you getting hot flushes now?

Sofi Leota [00:22:18] Yeah yeah I do. Not a not as bad as it was but I still definitely do get them. Yeah. Yeah there's been a few changes just yeah with the other women. It's yeah I think we all kind of connected and have common grounds. The beauty side of things and the physical side of things and the fear of not working. Yeah that the most common things.

Kellie Curtain [00:22:45] And so is it comforting to connect with others in the same situation?

Sofi Leota [00:22:49] It is. Yes it's comforting to know that others feel the same way and you're not alone. It's not just you that have those thoughts and feelings. At the very beginning of being diagnosed I did connect with a few older women. I just felt we were kind of on different pages with certain things so yeah to be able to speak with younger women and have the same ideas not on life but just on certain situations. Yeah it was definitely comforting to reach out and even just talk about the funny things and the funny side.

Kellie Curtain [00:23:25] What are some of the funny sides? What have you been able to laugh at even in these dark in those dark days? Did you find humor?

Sofi Leota [00:23:36] Off the top my I think just like the silly things like the chemo brain and forgetting... Like to think the other day I went and bought ...this is still happening, chemo brain. I was supposed to go and buy some toilet paper and I bought the hand towels instead. It's just really ridiculous things you like oh crap like it's like just yet really silly things like that.

Kellie Curtain [00:23:59] Yeah. So what what's the future hold for you because you now you're only 24 you say you've got a big life ahead of you? What's the future hold for you?

Sofi Leota [00:24:12] I definitely will. Short term I want to get back into some full time work. But now I've been exposed to this you know this side of life the cancer breast cancer side of life. I definitely want to get more involved and be a voice for younger women and in raising awareness where I can and however I can and just doing anything and everything that makes me happy. The small things whether it's work or in my social life.

Kellie Curtain [00:24:45] In some ways it's probably forced you to grow up really quickly.

Sofi Leota [00:24:51] Yeah I mean I feel like I was quite mature beforehand but now it's like a... it's a different kind of mature I'm just. I'm more... I don't know what the word is. There's a word.

Kellie Curtain [00:25:05] A bit more living in the now?

Sofi Leota [00:25:07] Not taking things for granted and being more grateful for for the things in my life and not wanting more more and more. Just really living for the moment. Yeah. And more optimistic.

Kellie Curtain [00:25:21] That's where in your blog you mentioned that you actually don't remember the person that you were before breast cancer. How would you describe yourself now?

Sofi Leota [00:25:35] A lot more resilient and I know my resilience. I think I would have been resilient then, obviously I'd just gone through that but I now know just how strong and resilient I am. I'm a lot more grateful and am proud of my life and the people in my life. And I just know... Not what I want but I know what I don't want.

Kellie Curtain [00:25:58] As part of your blogging. You wrote a letter to your previous breast cancer self. What was the takeaway of that for you when you wrote it to yourself? What was the thing that really stuck out for you?

Sofi Leota [00:26:15] I was just so proud of myself. It was just when I'd... It took me such a long time to write that blog. I think I'd honestly started writing it not long after I'd finished chemo. So that was like in November last year and I just couldn't finish because I couldn't stop crying.

Kellie Curtain [00:26:32] Do you think that was because it was part of a reflection of how far you'd come?

Sofi Leota [00:26:34] Absolutely. Yeah. So yeah just every stage of it, as I was writing I would remember certain moments and how I felt in those moments. And it just made me so upset. In a sad way and both also in a happy way that I've come so far and I now feel like this and I feel like such a huge triumph and yeah the release of that letter was kind of a weight lifted off my shoulders but it was just like... It was a really proud moment. It was like my little baby and I was just so happy to share it with the world and for people to realise that I have come a long way. Yeah that's the close of one chapter and the beginning of another basically.

Kellie Curtain [00:27:18] Well it was certainly positive to read so thank you for chatting to us.

Sofi Leota [00:27:21] Thank you.

Kellie Curtain [00:27:22] Upfront is a proud production of Breast Cancer Network Australia with thanks to Dry July. If you want to know more about breast cancer in young women there's links to resources on our website bcna.org.au. This podcast series is intended to provide information suggestions and discussion. Please contact your health professional with any concerns you might have. The opinions of all our guests are welcome but not necessarily shared by BCNA. We'd love to know your thoughts too so leave us a message on our feedback page. I'm Kellie Curtin. Thanks for being upfront with us.