Young women and breast cancer

Kellie Curtain [00:00:06] Let's be upfront about being a younger woman with breast cancer. Of the 53 people diagnosed with breast cancer every day, two of them will be aged between 20 and 39. Today, we're joined by Rebecca Bensted, who was diagnosed with breast cancer at the age of 30. Welcome, Bec.

Rebecca Bensted [00:00:24] Hello.

Kellie Curtain [00:00:26] You found your own ping pong ball, as you've just described it?

Rebecca Bensted [00:00:31] Yes I did. Early evening, sitting on the couch, come home from my friend's wedding, actually. Having a good stretch like on my arms, under my armpits just, you know, having a bit of a play, just wiping the sweat from, I guess it was late March. And like, oh, what's that? Just kind of that moment where you go: 'I can't ignore that'. And from that moment on, it was just kind of like, I have cancer. I can't, it can't not be.

Kellie Curtain [00:01:05] So did you regularly... you were only 30 at the time... did you regularly check your breasts?

Rebecca Bensted [00:01:09] No, I was more of the 'when I remember, I'll check'.

Kellie Curtain [00:01:15] And no family history?

Rebecca Bensted [00:01:15] No family history at all. And also it was really bad, as I always remember to check around that time of the month, which your boobs aren't what they normally are that time in the month compared to the other times, so, you feel your lymph nodes and you feel these things and they are normally bigger. So it was just, I was all out of whack. Never, never consistent.

Kellie Curtain [00:01:37] So your hunch was right. It was stage three. What was the treatment?

Rebecca Bensted [00:01:42] I had 18 months of chemo. Started off with a very aggressive 'Red Devil' A/C treatment, which is a red drug, which I learned later on, that even when they tested on rats and did their research all their insides were red.

Kellie Curtain [00:01:59] Okay.

Rebecca Bensted [00:01:59] Yeah. So it was it was kind of like a funny story I could tell my son at the time, like, oh, did you know, I'm red on the inside at the moment? He thought I was like some sort of superhero type thing, but yes. So, 18 months of chemo, 24, 28 days of radiation. And yeah.

Kellie Curtain [00:02:19] How was that?

Rebecca Bensted [00:02:21] I actually hated radiation way more than chemo.

Kellie Curtain [00:02:25] Why?

Rebecca Bensted [00:02:25] Fatigue just got me. It was, and I had radiation after my mastectomy and it opened up my scar. And it just, that, coupled with fatigue, coupled with everything else that you're gotta do and as well as going to work, being a mom, being Bec, I'm just like, I can't be bothered. But you can't stop midway through.

Kellie Curtain [00:02:49] So you had your treatment and then a single mastectomy?

Rebecca Bensted [00:02:53] Yeah.

Kellie Curtain [00:02:53] Did you consider having a double?

Rebecca Bensted [00:02:57] I did. But in the beginning I actually went in just before I started my treatment. When I, when I got all the information about it and I said, just take it. I don't trust it. Just take it. But my surgeon and my oncologist were like, you're only 30. We really don't want to take your breast if we don't have to. I'm like, well you're not the one that's got to walk around with it. Just it's fine. Oh, I've fed my child. It's, it's done. I'm done. I don't like it. Don't want it. But anyway, I was like, look, okay, I'll go through treatment. I'll just see what happens. And my chemo actually got rid of all my cancer. There was nothing, there. So when I went in for my surgery, they had my, I had two surgeries. My first surgery was to just take out a couple of clips that they had inserted into the tumour so that they knew where it was in the event it no longer was there. So my first surgery was to take those out. But during that surgery, they found 100mls of pre-cancer tissue which were in my breast. So I was 100 per cent gonna get it back if I didn't take it. So I said take it. So they did, but because I have no family history and I had submitted for genetic testing and there was nothing irregular, they said we're not going to take a healthy organ. So that was that.

Kellie Curtain [00:04:21] How did you feel about losing a breast?

Rebecca Bensted [00:04:25] I was really okay with it right up until they wheeled me into the anaesthetic room. I had the shits, I had some tears, but it wasn't more like I had lost something. It was that feeling that I'm actually having to go through it. So I had my little 'unfair moment' and then it was about a minute and a half and then I'm like nuh, don't want it. It's ugly and it looks sick anyway, so just chop it off.

Kellie Curtain [00:04:52] OK. So what was the impact? You've got a son who's now 7. So he was five at the time?

Rebecca Bensted [00:04:57] Yeah.

Kellie Curtain [00:04:58] Once you were diagnosed, you already had a child. Did you have to consider fertility?

Rebecca Bensted [00:05:04] Yes. It was actually probably the most asked question by my doctors. I and my husband Aaron were really lucky that we had decided not to have more children.

Kellie Curtain [00:05:17] Prior to the diagnosis?

Rebecca Bensted [00:05:19] Prior to diagnosis. Patrick's got enough personalities to keep us really occupied, so that was good. And I had mentioned that to them. They've gone, well, you know, if we do let chemo affect your ovaries, which if they are active, they will do, then ...

Kellie Curtain [00:05:36] There's no turning back.

Rebecca Bensted [00:05:36] No turning back. You'll need to have them out eventually. And that's just drugs, from this point on, to, until you get into menopause. And I said, okay, what's the other option? And they said Zoladex. Let's shut down your ovaries. If they're shut down, sitting there doing nothing, chemo won't affect them. So that was incorporated into my treatment, It was a monthly injection into the abdomen which shut down my ovaries. And after treatment, you just stop the injections and they will start back up and running whenever they feel like it. Which they did, so it was good.

Kellie Curtain [00:06:14] What was the impact on your young family, like husband and small child? How much did you tell him? How much did you think he needed to know? How much did he sense for himself that things weren't quite right?

Rebecca Bensted [00:06:27] I kind of couldn't help myself. I did tell him that I was sick the day I was diagnosed, just because I wasn't at work. I was completely out of routine. He had spent the night at Nanny and Pa's house the night before. So I did have to, I felt like I had to tell him something. But it was more like I'm sick. It, it's more than the flu. But I'm going to do my best to get better. And it was straight like: 'cool, mom, do we have any chocolate?'

Kellie Curtain [00:06:58] So that's enough about you, now it's about me.

Rebecca Bensted [00:07:00] That's it. And then over time, over time, over time he'd ask a little bit more and ask a little bit more. And as he got older and as the time went on, he began to understand what cancer was, what it meant to me. What it does mean to a wide variety of people. But I kept it honest and age-appropriate. That's probably the best way to describe it.

Kellie Curtain [00:07:23] On a day to day basis, how did it affect the family?

Rebecca Bensted [00:07:28] Well, I didn't quite look like mom anymore. I had no hair, very quickly.

Kellie Curtain [00:07:33] Did you consider the cooling cap?

Rebecca Bensted [00:07:36] No, it wasn't a thing for me. When they said you'd have to come in like two hours before, you'd be there practically all day. I'm just like that's too much time. And it's like a 50/50 thing, too. And I was just like, no, I was like really eager to shave my head. So actually, myself and Patrick, we,  a week before chemo started, we went and we shaved our heads at the hairdressers. The hairdresser tried to talk me out of it. She's like, let's just go a little bit. Just, you know, just not the full shave. And I'm like, I'm gonna lose it anyway. Just shave it. And I actually felt really quite liberated walking out of the hairdresser.

Kellie Curtain [00:08:11] And was that something to share with Patrick about what was happening?

Rebecca Bensted [00:08:15] Definitely. It was, it was something we could do together. Something to make it a little less frightening and confronting, I think.

Kellie Curtain [00:08:23] So you did that prior to your hair starting to fall out in clumps?

Rebecca Bensted [00:08:27] Yes. Also, too, because I had heard that once your hair does start to fall out and then if you proceed to shave it, it can be quite sensitive and sore. So I thought, nuh, I'll just jump the gun and do it.

Kellie Curtain [00:08:38] You mentioned the fatigue. What other side effects did you endure?

Rebecca Bensted [00:08:45] Joint pain. Tingling in the fingers and toes. Weight gain was another one with all the steroids and other things that they're going to put in your system. Nausea, it was a big, big thing, and it just seemed like no matter what nausea pill they gave me, nothing was gonna work. Absolutely nothing. It was like morning sickness, but on steroids, it was terrible.

Kellie Curtain [00:09:07] So how did you deal with that? Did you just have to suck it up or did you develop ways to do things until it would pass?

Rebecca Bensted [00:09:15] A bit of both. Like I'd sit and have my not fair moments. Most of the time on the base of the shower and just sit there. It's like the hot water was just nice. It was like a calming thing. And of course, with the drain there and if I had to vomit, it was a hole there and I didn't have to clean it up.

Kellie Curtain [00:09:36] That's actually a really practical thought process.

Rebecca Bensted [00:09:38] Yeah. It was just like it'll just go down the drain. I won't see it. it'll be over. You'll be fine.

Kellie Curtain [00:09:46] How much time did you spend on the base of the shower?

Rebecca Bensted [00:09:49] Sometimes it would be 40 minutes, it was terrible. Yeah. And I'm just like, I can't sit here anymore, I have to get up. And that was just like back to bed, really.

Kellie Curtain [00:09:59] OK. And did you stop work?

Rebecca Bensted [00:10:01] No, I actually worked all the way through.

Kellie Curtain [00:10:03] Was that your choice or you felt you didn't have a choice?

Rebecca Bensted [00:10:06] No, I had a choice. And my employer was incredibly supportive, but I felt like I just needed to keep a routine going. Not just for myself, but for my family as well. I'm not always the sit and feel sorry for myself-type person. So if I still feel like I have a routine, I have a way to socialize with people and not be in an area where I'm going to sit and think too much about myself and my own things that I'm going through, if I can just have a little bit of normality. That was really good for me.

Kellie Curtain [00:10:43] So did you reduce your hours or did you find that you'd go home earlier some days? How did you manage it?

Rebecca Bensted [00:10:51] My employer kind of left it to me. A lot of the time I felt like I can do my normal eight hour day, which was really good. On the days I had chemo, sometimes I would take the whole day off. Sometimes I'd do half a day. But I just kind of tried to keep as normal as I could.

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Kellie Curtain [00:11:29] You went through the public system?

Rebecca Bensted [00:11:30] Yes.

Kellie Curtain [00:11:31] How was that experience?

Rebecca Bensted [00:11:32] I actually found it really lovely. Peter Mac is a really great place to be. And it was actually a place where I actually felt I needed to be. So when I got my referrals from my GP, they were to two private GPs. The first number I called got an answering machine, so I'm like 'cool, scrap, don't need you'. The second number I called, I was able to get in the very next day. And before I even mentioned Peter Mac, he said, look, I will evaluate you, but I'm actually going overseas next week. I'm gonna give you a referral to my mate, who, Michael Henderson, who's a surgeon at Peter Mac. You can go there. So I just felt like all my stars were aligning, not just because that I was in Port Melbourne. Peter Mac was an easier commute and it was close to home, but I just felt I just needed to be there and it all worked out in the end, so it's really good.

Kellie Curtain [00:12:34] So you had your single mastectomy?

Rebecca Bensted [00:12:37] Yeah.

Kellie Curtain [00:12:37] And now we're a couple of years on?

Rebecca Bensted [00:12:39] Yeah.

Kellie Curtain [00:12:41] And you haven't had reconstruction?

Rebecca Bensted [00:12:43] Nope.

Kellie Curtain [00:12:44] Why is that?

Rebecca Bensted [00:12:46] I had spoken to a few people who had jumped the gun, so to speak, and done it really early and actually had done it at the time of their mastectomy. Some prior to further treatments. People who had had radiation following the mastectomy. I found, they found, that the radiation completely buggered up the construction and I knew going in that I was going to have radiation. So that was my first thought. I'm like, I don't need to have that right now. My second thought was I'm not 100 per cent sure that I want it.

Kellie Curtain [00:13:28] Which is, we find at BCNA not uncommon for older women, but for younger women..

Rebecca Bensted [00:13:36] Yeah.

Kellie Curtain [00:13:37] And you're still in your early 30s. Breasts are still very much part of a body image.

Rebecca Bensted [00:13:43] Yep.

Kellie Curtain [00:13:43] But you don't.

Rebecca Bensted [00:13:44] No.

Kellie Curtain [00:13:44] Have that attachment?

Rebecca Bensted [00:13:45] I think it's different for everybody. In my case, I am happily married. I have a child and I wasn't having any more. So I think I feel very grounded in my place in life. And it's not something that I necessarily need to feel a particular way or to impress a particular way. And I think because I had lost so much trust in the left breast, it just needed to go. And I think while it's away and while I'm still transitioning into this new Rebecca, it's nice not to have a worry there.

Kellie Curtain [00:14:28] What's the difference between the new Rebecca and the old Rebecca?

Rebecca Bensted [00:14:31] Oh, God, it's full circle. I was super anxious before, hated taking risks. Very unsure of my own self, my own position in the whole wide world. And now I just have not a not-care attitude, but just like life's so much bigger than whatever problem I have going on. It's kind of like a first-world problem, so to speak. A little more risky, although I still do like my feet on the ground. But I just made a conscious effort to try and do things that are outside my comfort zone.

Kellie Curtain [00:15:11] Like taking off your top to appear in a national breast campaign.

Rebecca Bensted [00:15:15] Exactly. I would have never done that before and never even thought about it. I also scuba dived with sharks. So that was another thing.

Kellie Curtain [00:15:24] Was that a bucket list thing before the breast cancer or that's like, no, I'm going to do this.

Rebecca Bensted [00:15:28] Yep.

Kellie Curtain [00:15:28] The new brave Rebecca.

Rebecca Bensted [00:15:31] Yep.

Kellie Curtain [00:15:31] Just touching on the Pink Bun campaign that you were involved in. What was that experience like? So you were you were naked from the waist down and you were showing there's just one breast.

Rebecca Bensted [00:15:44] I was. It was so much fun. And I didn't think it would be so much fun. I thought I would have more apprehension than I did. I bought Patrick along with me, and he had an ace of a time. He loved it. He had a great time talking with John and his friends. They were trying to explain to him that if I asked him how many lollies he'd have, he'd just hold up, like half the amount of fingers of what lollies he ate. So he, he had a great time. It was, I found like the, kind of like a reunion of people who had never met before. It was like we all had one thing in common and we'd all been through it very differently, but been through it. It's like this little camaraderie of people. And it just felt very comfortable from the get-go. So good.

Kellie Curtain [00:16:35] Which is what we'd like to think of BCNA is just a big community of people with breast cancer being supportive. You sort of sat back - I mean, aside from the campaign.

Rebecca Bensted [00:16:45] Yeah.

Kellie Curtain [00:16:47] You sat back on the sidelines of getting involved either in the online or seminars or anything like that, just participating. Why? Why was that? And what flipped your mind to become a bit more involved.

Rebecca Bensted [00:16:59] I think, too, when you go through breast cancer treatment and you have so many people in your face and in your bits and you're going through every test and you're going through so many appointments. And it's a lot to take in. So I think when that's all over, you kind of got to sit back and reflect a little bit. And for me, about halfway through my treatment, I started to do that and then half way outside, about six months outside. I kind of felt like I was on the other side of it a little bit. So I went to the young women's conference that was had. And just sitting and listening to other people and hearing stories of people who had went through it, who were going through it now, it was just kind of comforting to know that you're not alone. It's, it's not something you have to go through alone and it's not something you have to be, you know, raising banners for either. You know, you can choose to be as committed to or not committed at all to raising awareness, but I felt like. I needed to be someone who could raise a little bit of information, not just for my own family or friends, but for the people who don't necessarily feel like they have anywhere to go or anyone to turn to.

Kellie Curtain [00:18:33] You clearly have a supportive husband and a very active son and a terrific family unit. What is something that BCNA as a support network was able to give you that perhaps your friends or family couldn't?

Rebecca Bensted [00:18:50] Well, like I said, I hadn't, I had no family history of breast cancer. So there's always gonna be the first one to go through it. So that was me. I can't put myself in my husband's shoes and kind of think about what he went through. He saw what I went through. But at the end of the day, he doesn't necessarily know how I felt. Doesn't know the worries you have. You know, at the 3 a.m., when you're wide awake going, I can't get to sleep. So it's great to be able to turn to an organization such as BCNA, who have people there and have ways to help you for any question that you have, not necessarily about cancer itself, about lifestyles after, what you might expect. It was kind of like a place you could turn to to ask the hard question that you don't necessarily want to worry other people about. That's how I felt.

Kellie Curtain [00:19:49] So you're at the other end, so to speak?

Rebecca Bensted [00:19:52] I am.

Kellie Curtain [00:19:52] Are you ruling out reconstruction or you just want to sit on it for a while?

Rebecca Bensted [00:19:56] I just want to sit on it for a while. It's not until probably the last six months where I actually felt like my body was acting like my body again, processing things as it should.

Kellie Curtain [00:20:06] So we're talking two years on now?

Rebecca Bensted [00:20:07] Yeah. Joint pain is getting less and less. My hunger for life, so to speak, actually wanting to get out of the house, wanting to do new things, wanting to work out, wanting to go for a swim, wanting to eat healthier. All these things just feel like I'm getting aspects of the old Rebecca back, but kind of new and improved. So I just want to keep going down that path and just not put my body through it until I'm 100 per cent ready and committed to doing that.

Kellie Curtain [00:20:41] So really, for many people, once the treatment stops, the wider circle, if you like, tends to forget that you've had breast cancer and you're trying to navigate the new you and all of that. It's obviously taken some time. So what would your message to someone, not necessarily younger, but anyone that has gone through breast cancer and treatment and the aftermath. What's your key takeaway? Your key learning?

Rebecca Bensted [00:21:16] My learning is that it takes time and it's sometimes a really hard pill to swallow, but you have to allow yourself the time to heal. For everyone, that's different. Sometimes it's just physically, sometimes it's mentally, emotionally. Some people go through a spiritual change. I was not the type of person who 100 per cent changed their diet afterwards. I wasn't like, I'm going to eat everything that can be juiced, or only eat white meat or all these things. For me, it was just about getting comfortable with how my body is now. It's very similar to after you have a baby. Your body doesn't work the way it used to. There's new things that hurt. There's new things that take time. For me, my wrists aren't what they used to be so tennis, which was a big part of my life before treatment, isn't so much now. But yeah, it takes time and I think just give yourself a break. Don't be so hard on yourself. Allow yourself the time. Try something new. It's just not you're not going to have the same thoughts or the same feelings as you had before. And that's completely OK. Now's the time. It's, it's like almost like you're a teenager before you're an adult again. Make some mistakes. Find out what you like. If it doesn't work, that's really okay.

Kellie Curtain [00:22:36] So how's life for you now then?

Rebecca Bensted [00:22:37] Really good. I like to call myself boringly normal now. I actually recently had my one-year check-up, my mammogram and ultrasound. And I walked into Michael Henderson at Peter Mac and I said, oh, how he does. And he's he's like, Hey, mate, how's it going? You know, how you been? Like really good, boringly normal. And he's like, well, your results are boringly normal, too. I'll see you in a year. So I ended up waiting longer than I was in there. I think I was in there five minutes, but it was really good, Just taking my time. Kind of enjoying the little things then. Help build up my son to focus on the things he wants to focus on now. Which is really nice.

Kellie Curtain [00:23:17] Well, congratulations on being beautifully, boringly normal.

Rebecca Bensted [00:23:21] Thank you very much.

Kellie Curtain [00:23:22] Thank you for joining us today on Upfront, which has been made possible with thanks to Sussan. You can find more information about issues affecting young women with breast cancer on our website bcna.org.au or on our my journey online tool at myjourney.org.au. The opinions of our guests are welcome, but not necessarily shared by BCNA. If you have any individual concerns, please contact your health professional. And if you liked this episode, make sure to leave us a rating and review on Apple Podcasts. I'm Kellie Curtain, thanks for being upfront with us.