Episode 17: Young women and breast cancer (Ruth)
Every day, two young women are told they have breast cancer. Ruth Williams was 38 when she was diagnosed. She talks with host Kellie Curtain about raising two young children, the frustration of buying a wig that was never needed and the time it took to overcome her fear of returning to work.
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Kellie Curtain [00:00:04] Let's be upfront about the issues younger women face as a result of a breast cancer diagnosis and treatment. According to data, the average age of someone diagnosed with breast cancer is 61. But every day, two women aged between 20 and 39 will be diagnosed, and the challenges they face can be different to other groups. Today, we're joined by Ruth Williams, who was diagnosed with breast cancer at the age of 38. Welcome Ruth.
Ruth Williams [00:00:31] Thank you.
Kellie Curtain [00:00:33] So, was it a shock?
Ruth Williams [00:00:36] Yes, it certainly, it certainly was. There was no family history, it wasn't something that was on my radar at all. So it does come as quite a shock to find out you're the person that it's happened to.
Kellie Curtain [00:00:52] Did you know anyone in the younger age group that had had breast cancer?
Ruth Williams [00:00:55] No. I mean, you sort of have this awareness of, you know, someone like Kylie Minogue, for example, but, and maybe sort of acquaintances, friends of friends, but not really, no. And it wasn't even something I was particularly conscious as as being a risk for me.
Kellie Curtain [00:01:17] You were also very busy in your life. You had two very young children, one of whom was only, what, 18 months? How did you feel apart from shock, when you were given the diagnosis?
Ruth Williams [00:01:32] Yeah, well, you know, the two children and working part time as well. So you sort of have all this stuff going on and suddenly this comes out of nowhere, really. And all of that just sort of, you know, gets put on pause, if you like.
Kellie Curtain [00:01:55] What was your diagnosis?
Ruth Williams [00:01:56] So it was stage three. So it was in, had multiple lymph nodes involvement. Grade 3, so it was growing quite rapidly. There were at least two tumours and it was HER 2 positive, which meant it was one of the more aggressive kinds as well.
Kellie Curtain [00:02:21] So what was your line of treatment? Take us through that.
Ruth Williams [00:02:24] So first, because it was inoperable at the time, so I had a reverse sequence, which was chemo first; six rounds of what's called TCH chemo. Concurrent with that at first and then ongoing for a year were infusions of Herceptin, then was six weeks of radiation and finally a mastectomy and axillary clearance.
Kellie Curtain [00:02:55] That's a lot to take on, especially when you've got two very young children. How did you cope?
Ruth Williams [00:03:00] Well, it was yes, it was quite a process. And when you're at the start of it, it seems like you'll never get to the end. But you really just have to take it step by step and listen to your team and know that it will come to an end eventually. So remembering that was something that helped get me through. But then drawing as much as I could on the support that was around me and the resources that were around me. Yeah.
Kellie Curtain [00:03:36] So you had a double mastectomy?
Ruth Williams [00:03:39] No, single.
Kellie Curtain [00:03:40] Single and reconstruction?
Ruth Williams [00:03:43] Yes. So the single was on the advice of my, of my team. So for some women, a double is the best option. But for others, it's considered over-treatment. So I took that advice. Yeah.
Kellie Curtain [00:04:00] We have a few women that elect for a double because they feel like their breasts have betrayed them and they just want them off.
Ruth Williams [00:04:10] Yes.
Kellie Curtain [00:04:11] Did you consider that?
Ruth Williams [00:04:12] I did, briefly. But that was one area where I was happy to take the advice that I was given. And it's always something I can revisit down the track. But for me, I felt like it was the right decision to go single.
Kellie Curtain [00:04:32] So did you have your reconstruction at the same time that you had your mastectomy?
Ruth Williams [00:04:38] Yes. So I had an expander, an air expander put in when I had the major surgery. So that sort of works by gradually expanding the tissue to allow the implant to go in. So the short answer is yes. But in reality, it was a three-surgery process to finish the reconstruction.
Kellie Curtain [00:05:06] What was the impact on your family life?
Ruth Williams [00:05:10] Well, it's a funny thing. My children were very small. So I sort of prepared them, but because I didn't lose my hair because I did scalp cooling, there was no sort of visible sign to them that there was something really wrong. They were aware that I was going to the hospital regularly. And at one point, one of them sort of talked about how they go to child care and daddy goes to work and mummy goes to hospital. And that's quite heartbreaking to hear that.
Kellie Curtain [00:05:50] So, did you say that you were sick?
Ruth Williams [00:05:52] Yeah. We sort of talked about how mummy had a sickness and was going to the hospital for that. And then just things like sort of mentioning that I had a delicate arm, for example, and keeping it simple and not giving them too much extra detail.
Kellie Curtain [00:06:17] Did you find you were able to really look after yourself because people with very young children know that young children are very needy and they're actually, through no fault of their own, not actually interested in what you need. They're interested in what they need.
Ruth Williams [00:06:33] Yes.
Kellie Curtain [00:06:33] So were you able to really focus on you and how did that impact on you and your husband as a family?
Ruth Williams [00:06:40] Yeah, I was very lucky in that I had a lot of support around me from family and friends. And I think, you know, if there's one piece of advice I'd give, it's to avail yourself of the support that's offered.
Kellie Curtain [00:06:58] Are you naturally a person that would ask for help?
Ruth Williams [00:07:00] No, not really, no. I was also very fortunate to have a kinder that was able to look into and organize some childcare subsidy, special childcare subsidy, which helped a lot. So, yeah, it was hard to find that time, but it also had to be a priority as well. So you just sort of find a way through. You draw on what's available and the time. In a way, I was more present for my children during that period because I wasn't at work. I wasn't in a sort of distracting, high pressure work role. I had one job apart from, you know, your role within the family, which was to get through treatment. So, yeah, in some ways it was I was more available for them.
Kellie Curtain [00:08:06] How did the treatment affect you? What was some of the key side effects that you suffered?
Ruth Williams [00:08:10] Well, yeah. So chemo is a massive process. I mean, it's it's a very difficult process. It is a process that you can get through with the right support. I sort of took a bit of a systematic approach where I looked at all of the side effects and thought about ways that I could counter them. And my oncologist was great with that. So I was quite careful to exercise throughout chemo, which is a definitely a tip that I would give women is to stay active.
Kellie Curtain [00:08:49] How do you think that helped you?
Ruth Williams [00:08:51] I think it helped give me a sense that I was contributing to my own treatment. It gave me an active thing to do. It added to that feeling of positivity. And you know, exercise generally is good for you. And at this time, it just gave me that added boost.
Kellie Curtain [00:09:17] What about the bad days? What were they like?
Ruth Williams [00:09:20] Yeah, well, the bad days are bad. There's days where you can't really get up at all. One thing chemo does do is sort of strip away a lot of your ability to experience good things so you can't taste your favourite foods. A few days after chemo, you know, your mind doesn't quite work as it normally would. So you can't, for instance, perhaps you can't read a book or follow a movie. It does make you very tired so you can't get up and go for that walk or go catch up with friends.
Kellie Curtain [00:10:02] So did you accept that and do you just sleep or did you find something else to do?
Ruth Williams [00:10:07] Well, a bit of everything I did six rounds and each round is different as well. Some are worse than others. So it's just, I did as much as I could. And a couple of times I overdid it and ended up sort of being stuck somewhere, having walked to there and realizing I couldn't get back because I was too tired. So that's something that can happen. So don't do that.
Kellie Curtain [00:10:34] And I think women particularly naturally tend to think to overdo it.
Ruth Williams [00:10:41] Yes, that's right. Yeah. But it was really important for me to stay as active as I could and stay as involved as I could.
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Kellie Curtain [00:11:04] You had a full axillary clearance as well.
Ruth Williams [00:11:08] Yes.
Kellie Curtain [00:11:09] Which makes you more susceptible to lymphodoema. What sensations, what downside did you have from that, if any?
Ruth Williams [00:11:21] I'm lucky in that I've not had symptoms so far, but it will be a lifelong risk for me. The need for a full axillary clearance was something I really pushed on and asked about and again was given the advice that it was appropriate. So that was something I had to listen to and do. Hopefully in years to come, women won't have to have all of their axillary nodes out. But anyway, I did. So one thing that I do do is see a specialist lymphodoema physio quite regularly. I don't have any sensations sort of under my arm, which is quite standard I think. And then there's the sleeve that you need to wear on flights. So far for me, there hasn't been a problem, but it's something I'm really paranoid about. Long sleeves, mosquito repellent, gloves.
Kellie Curtain [00:12:17] So you're vigilant?
Ruth Williams [00:12:18] I'm very vigilant. Yes.
Kellie Curtain [00:12:21] So to be vigilant can often be costly?
Ruth Williams [00:12:26] Yes.
Kellie Curtain [00:12:27] You went through the private system, but you still felt a considerable financial burden, didn't you?
Ruth Williams [00:12:36] I don't regret going private. I did go in with my eyes open and I was really happy with my breast surgeon and oncologist and plastic surgeon. They were a really good team.
Kellie Curtain [00:12:48] And transparent, so you knew there were no nasty surprises?
Ruth Williams [00:12:54] No. That's right. So it's really important to make sure you understand the costs. And if you want to go private, you can get other cost breakdowns from other surgeons, other oncologists, other plastic surgeons.
Kellie Curtain [00:13:10] Can you negotiate?
Ruth Williams [00:13:12] Well, you can, I think. Radiation oncology is something where, just from talking to other women who've been through the same thing, there seems to be quite a variance in how much people pay. So I definitely .... it's really hard when you're going through that to try and be assertive and question the cost of things. But it's something that you really do need to do. And I find that people really don't hold it against you in any way. It's it's just something that you really should do.
Kellie Curtain [00:13:50] Do you know how much out of pocket you are?
Ruth Williams [00:13:54] I don't. I was a bit too scared to add it up. For me, the costs, the associated costs, things like the scans, the diagnostic scans, for example, blood tests.
Kellie Curtain [00:14:09] So it's the ongoing costs. You're still being hit with them?
Ruth Williams [00:14:12] Yeah. I mean, I still have ongoing costs. The lymphoedema physio, who is wonderful, but that's a cost. There's all sorts of things that that are sort of ongoing. At the time, you know, I had to have regular echocardiograms because I was on Herceptin. So that's another regular cost. Yeah, there's all sorts of random things that come at you that you don't expect. And when you're trying to do the right thing and spend money on exercise, for example, or good food, which you should be doing anyway. But at that time, it's another extra cost as well.
Kellie Curtain [00:14:56] Yeah. Frustrating?
Ruth Williams [00:14:58] Yeah. Frustrating and a feeling that things are getting a bit out of control and also perhaps just a resentment that why should I have to be paying for these extra things? Not that I expect anyone else to pay for them for me, but my peers are not paying for these things. The only reason I need to buy these things is because of my diagnosis.
Kellie Curtain [00:15:25] So it is. It must be frustrating, especially when you've got a family and there's only one pie and you've got to carve up the funds. It all adds up.
Ruth Williams [00:15:32] Yeah. And if I had my time again, I would probably be a bit more savvy about some of those ancillary costs, if you like. Things like, you know, buying a wig when it turns out I didn't need it. Post-surgery clothes, you know, just ... you don't need as much as you think you will because it's not forever that you're going to be recuperating. So, yeah.
Kellie Curtain [00:16:01] What about the impact on your life after treatment has finished?
Ruth Williams [00:16:11] Yeah, well, it's been two years since treatment finished for me, and it certainly. It's such a cliche to say it changes your perspective, but it does. There's one thing that you do struggle with is that fear of recurrence, which I think everybody struggles with. So getting on top of that and learning strategies to cope with that is really important.
Kellie Curtain [00:16:40] What are some of the ways you've tried to tackle that fear?
Ruth Williams [00:16:43] Well, after a couple of false alarms, that helps, but also sort of setting yourself time frames. Like if this is still bothering me in two weeks, then I'll go to my oncologist and get it looked at. Those sorts of things. You know, don't worry about something until you know you need to worry about it. And that was a really important lesson for me during cancer treatment. There's all sorts of what ifs. Things that might happen as a result of the treatment. The big lesson for me was not to worry about the what-ifs, but to worry about what's right there that you're dealing with now, because a lot of the what ifs might never happen. And you go through that process of worrying about it. And it's wasted energy in a way.
Kellie Curtain [00:17:34] So I assume that maybe what if I lose my hair, which is why you got a wig.
Ruth Williams [00:17:38] Exactly.
Kellie Curtain [00:17:41] Was one of them and it didn't happen?
Ruth Williams [00:17:41] That's exactly right. Yes. Wait until you see how it goes. Yeah.
Kellie Curtain [00:17:47] Which is sometimes easier said than done, isn't it?
Ruth Williams [00:17:49] It is. And you feel like you want to act on it and get it fixed and get it sorted. But in the meantime, you know, you're just going through horrendous stress and anxiety. So it's, I mean it's really hard not to give in to that. But the big thing that I learned was a lot of the what ifs won't happen, so don't worry about them until they do. And if they do, then deal with it.
Kellie Curtain [00:18:17] Did you experience any anger? Why me? Or felt that it was unfair, any of those sort of emotions? Again, not that you wish it to happen to someone else, but feeling a little bit ripped off that your body has betrayed you in some way?
Ruth Williams [00:18:35] No. I mean, I never had the why me thing. Because it is quite random. I mean, there's a certain puzzlement that you have. As in, well, what was it? What was it that caused this to happen? Was it something I ate? Was it some sort of product I used? I mean, you're never going to know that. So.
Kellie Curtain [00:18:58] Did that play on your mind, though? Did you?
Ruth Williams [00:19:01] Yeah, for sure. And then you read through the risk factors and you're like, well, that applies, but that doesn't apply and that doesn't apply. So there's that puzzlement and curiosity about what it was. And there's also an eagerness to try and not to do the same thing again. There was a funny thing where early on there was sort of a weird thing about other women who'd had breast cancer, who'd had less treatment or required less treatment than me, which I've talked to other women about. And it is something that people can experience. And it was something I was conscious of and got on top of. But that comparing yourself to other women with breast cancer and how come she doesn't have to do chemo and I do? Really weird emotions that don't make any sense. But these are the sorts of weird things that your brain can sort of think of while it's working through what's happened, I guess.
Kellie Curtain [00:20:11] So you had the mastectomy and the reconstruction at the same time. Is that something that was really important to you to have a reconstruction? And are you happy with how it went?
Ruth Williams [00:20:26] Yes, it was important to me and I am happy with the outcome. I was not happy at the time with the kind of reconstruction I had to have, which was the lat dorsi with implant, when I'd sort of had my heart set on the tummy tuck procedure. But that wasn't an option for me. So there had to be an acceptance that if if I was going to have a reconstruction, that this is what it would involve. So that was quite hard at the time, but I'm quite happy with how it turned out.
Kellie Curtain [00:21:02] So is that another what if that you were worried about but has turned out to be fine?
Ruth Williams [00:21:08] Yeah, that's right. I mean, you there's no doubt that losing the lat dorsi muscle affects some things that you do.
Kellie Curtain [00:21:17] Such as?
Ruth Williams [00:21:19] Closing a car door is really hard. Riding a bike can be a bit strange if you've got, if you're carrying too much weight on it. I mean, I ride my bike everywhere. It doesn't stop me. But you sort of, you're conscious that your movement has changed a bit. I don't regret it. And it certainly hasn't had a major impact on my life in any way. But it is something that's different that I've had to deal with and work around.
Kellie Curtain [00:21:51] And also, I guess it depends on your lifestyle if those muscles are really important. Yeah, to think about your reconstruction, and what impact that's going to have on you.
Ruth Williams [00:22:01] Yeah. I mean, I know women who were really into stand up paddle boarding who didn't do that. But I mean, I have done kayaking since and it's been fine. So again, it, the impact might not be as bad as you might fear. It wasn't for me anyway.
Kellie Curtain [00:22:25] What about the impact on your career?
Ruth Williams [00:22:28] Yeah, well, with treatment, you've basically taken away from your life for a year.
Kellie Curtain [00:22:35] So you took you had to take 12 months.
Ruth Williams [00:22:37] Yes, I took 12 months off and I was really lucky to have a wonderful employer and very understanding and supportive employer and very supportive colleagues.
Kellie Curtain [00:22:49] Was it that you didn't want to work, you didn't want to try and work through it or you physically couldn't?
Ruth Williams [00:22:57] I don't think I could have worked through it with the kids as well. I think the children and treatment was enough, especially the kind of work I was doing in the media, which is really demanding work. It's hard to have an off day in journalism. So, I took the year and it was the right thing. And I'm very lucky that I was able to do that. But you leave a workplace for a year and, you know, you fall behind on things. You're not up to date on what's going on. There's new systems that come in, new people. There's inevitably, if you're out of action for a year, there's opportunities that pass you by. So, yes, it does affect your career in that respect.
Kellie Curtain [00:23:49] So have you adjusted to that or accepted that? And how did you actually feel then when you did return to work?
Ruth Williams [00:23:59] Going back to work was quite daunting. It's quite daunting going back through those doors and wondering if you'll be able to do the job. Having been a patient basically for 12 months, there can be a certain lack of confidence there and also a certain self-consciousness, I guess, because everybody knows what you've been through. Everybody was, again, wonderful and supportive, but it can be a hard time going back to work. I've since changed jobs and changed careers. Sort of sideways, nothing too radical, but I felt like it was time for a change for me. So I've been back in the workforce for two years now and I feel like I'm going pretty well. And I'm yeah, I'm sort of happy with with how things have gone. But it did take a bit of bit of effort to get back to work and to get my confidence back as well.
Kellie Curtain [00:25:08] So as you said, two years on now, how is how is life?
Ruth Williams [00:25:14] Life is good. Yeah, it's it's hard to believe that two years have passed in some ways. And it's amazing how it does fade from your mind, in a way. And when you're in the middle of it, it's really hard to believe. And you almost don't want to hope in some ways that you'll get back to life as normal. But, you know, I was very lucky in that it had, has and I've been able to get on with things, really, and enjoy my children and enjoy life, get on top of the fear of recurrence and deal with the sort of challenges that remain. But yeah, things are pretty good.
Kellie Curtain [00:26:09] It's good to hear it. Thank you for joining us today on Upfront, which is an episode that's been brought to you by 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 my.journey.org.au. The opinions of our guests are welcome, but not necessarily shared by BCNA. If you have any individual concern please contact your health professional. And if you like this episode, make sure to leave us a rating and review on Apple. I'm Kellie Curtain. Thanks for being upfront with us.