#awinewith Rachelle Panitz
Transcript
Danielle Lewis (00:07):
Amazing. Rochelle, welcome to Spark tv.
Rachelle Panitz (00:12):
Thanks so much for having me. This is awesome.
Danielle Lewis (00:14):
I'm so excited to chat with you. I have been a longtime stalker of yours online, so excited to share your story today. Why don't we start off just by telling everyone who you are and what you do.
Rachelle Panitz (00:30):
Alright, well, thanks again for having me. It's amazing. Oh gosh, I hate these questions because you don't ever know what you're going to say. Rochelle is my name. That's a great
Danielle Lewis (00:42):
Start.
Rachelle Panitz (00:43):
That's a good start. Rochelle and founded. So Brave, which is Australia's only young women's breast cancer charity back in, I say 2015 because that's really when everything sort started in earnest. We didn't become a national charity incorporated as its own charity until 2017, but we operated under the auspice of the National Breast Cancer Foundation from when we first started. But yeah, I started a charity who starts a charity. Why do they do that? And sometimes I do ask myself that. So basically in 2013, I was pregnant with my second child, Henry, and I was laying in bed and I looked over into my cupboard and I had this breast check hanging thing that my sister had sent me from the Sydney Breast Cancer Foundation hanging in my closet because it wasn't waterproof. So I wanted to make sure I could still see it. Anyway, I wasn't probably checking my breasts very regularly, but I had known somebody, a good friend of mine, who was diagnosed at 36.
(01:58):
And so I knew breast cancer was something that did happen to younger women as well. So I don't have a family history or anything though, so I didn't ever expect it to happen to me. But I suppose I had been told when I was a lot younger that I did have lumpy breasts, which made it quite difficult to check. But the best thing about being a mother was being able to breastfeed my daughter. I was able to get a really good understanding of what was normal for me because when you're breastfeeding, you're trying to avoid getting mastitis or blocked milked up or something like that. So you're constantly trying to figure out what's normal and making sure that everything's working properly. So I had a really good understanding of what was normal for me, especially at that time being pregnant with my second. So it was probably about this time in 2013 that I felt a lump in the right side of my right breast. So it's very stereotypical story in terms of how I found it. It was a lump, but obviously breast cancer can present in so many different ways.
(03:11):
So I turned to my husband and said, what do you think of this? And he tried to probably calm me down a bit and said, let's just talk to the doctor about it in next obstetrician appointment. And I think we were having them every couple of weeks by that stage. So I knew that it wasn't that far away. And so I went and we saw her, and in the appointment I did make a comment about it. She did have a feel to see what it was. And her response was that it was probably normal fibrous tissue, nothing to worry about. My body was probably getting ready for my baby, but that she would make a note of it on her chart and that we would talk about it after the baby was born. So I kind of left, put it to the side probably thinking I was a bit of a hypochondriac thinking this is all nothing. There's no reason for me to be worried about this.
(04:07):
Hadn't been drinking, was fairly fit, was breastfeeding as a mother under 30. So when you think about all of the reasons why you should be, I've never smoked, not a candidate for breast cancer. I probably didn't fit the mold definitely as a younger woman, definitely didn't fit the mold medically. So I had my baby, beautiful, beautiful baby. And about 10 days after he was born, I mean, I could still feel the lump there. And so I was trying to sort of massage it out, really hoping that it was just a blocked milk duct or something like that. And I just remember saying to my husband, look, I think it's gotten bigger. And I called my obstetrician the next day. I didn't get her. I got her receptionist and her receptionist told me that she wouldn't be speaking to me or seeing me until my six week.
(05:05):
And that was still a good four or five weeks away. And if I was really worried to go see my gp, which I did, and I saw my GP who I've been seeing for years. So she and I have a pretty good relationship and everything's been really compatible that way. Anyway, so she felt it and without even blinking, just decided I was going to go get it investigated, which I'm forever grateful to her for. She sent me the very next day, she booked me in while we were in her rooms, and I went up the next day. But the issue was that the sonographer couldn't find it on the ultrasound. So instead of trying to do some more tests or maybe asked me to feed again and do another go at the ultrasound, they told me my results in front of everybody in the waiting room and said, look, it's normal lactating tissue, nothing to worry about.
(06:09):
Come back in six months if you're really worried. And I said, well, I am really worried because you couldn't even find it on the screen. Anyway, so cut a long story short, I decided to get another ultrasound. And this time the lady Margaret, who's retired now, thank it, is a bit sad for everybody. But she just did a second sweep of the breasts, and this was at a different hospital. And there it was on the 17th of January, 2014. So I guess the thing is that I didn't set about to become this massive breast cancer warrior. I was just going about my life. I was in the thick of my international business career. I'd been living overseas before my daughter had been born just three years prior to that, working for both Queensland and federal governments doing all sorts of international engagement type roles. I was really excited about the role I'd had.
(07:20):
But yeah, that all came really tumbling down as soon as I had my diagnosis and I really needed to just focus on what was really important. Anyway, 18 months of heavy treatment ensued. I had two surgeries pretty quickly after my diagnosis all before the end of January and then started an IVF fertility preservation round, and then six months of chemotherapy during which I had an anaphylactic response to one of the newer chemotherapies. So that was pretty exciting experience. Went through immunotherapy and radiation therapy, hormone therapy, and I've been on drugs of some description since then and I'm coming up to 10 years in January. So I guess it's the thing of my very, very kind, a GP made a comment right at the beginning of this whole disaster and said, it's not a sprint, Rochelle, it's a marathon. And I really had to sit with that because I'm a go-getter.
(08:43):
I have got a dream or a goal and I just go plan, plan, plan, get it it done, move on the next one. And I still am like that. But with breast cancer and being a patient, there is no sprinting, there is no rushing there is just getting through doing this thing today, that thing tomorrow, this thing this minute, this thing this hour and just moving through it to try and get through. I guess the reason why so brave became something was because like I said, never set up to set up a charity. And honestly, anybody who wants to come talk to me before you do it, there's a lot to consider.
(09:37):
But I remember being down in Melbourne at this retreat with my kids and my husband and it was with another organization, fantastic breast cancer charity called the Otis Foundation, was set up by a lady called Kerry who wanted to give retreats for free to women and their families after and during treatment. And it's this amazing experience that being able to just get away from your normal day to day with your family and lots of very generous people donating their holiday homes or their second homes so that you can go and enjoy that time away. And I just remember being down there, this would've been August, 2015, so I'm about a year and a half out of my diagnosis and only a little bit beyond my last treatments. And I'm sitting reading the guest book at this place, and I was reading this story by this young man who'd brought his two young children along, and I just couldn't escape the similarities between his experience and what mine could very well have been had I not gone and gotten a second opinion gone and really kept going with that and advocated for yourself to be able to get the diagnosis and to get through it all.
(11:08):
Anyway, so I remember waking up maybe the next day or the day after with just this idea of I'd met a lady called Wendy Fantasia, who's a fabulous body paint artist down in Melbourne at a conference the week before and at the conference dinner she'd offered to body paint me. And I have to say, once you have children, all kinds of glamor about your body kind of leave you. But once you've had breast cancer that is doubly so you kind of lose all sense of, you do lose a lot of sense of your body image. And so when she suggested this to me, I was kind of a bit horrified because I had never considered doing anything like that, but it did sort of just play in my mind. And so I remember saying to my husband, I really think I should contact her. Wouldn't it be amazing if we got a whole bunch of young women who'd had breast cancer together, did this body painting, wouldn't that be incredibly empowering to put that line in the sand between when they were diagnosed and then hopefully into the future?
(12:16):
So I contacted her and I said, how about we do a calendar before the end of the year? And she kind of laughed and now I really do understand why, because there's so much that goes into being painted, but also putting together all of this collateral to make a calendar. So we're actually in the middle of making our eighth calendar right now that that was cool. Yeah. So the first one came out in August, 2016, that was our 2017 calendar, and we traveled up the Eastern seaboard then and we did painting with a whole bunch of young women. And what I kept hearing was their stories of neglect or disproportionate disadvantage, unmet needs, gaps in the system, not being able to access their diagnosis and a lot of trauma about that, but also a lot of community around that because we'd all had that shared experience.
(13:20):
So come December, I am meeting with the boys from Orange Sky Laundry, shout out to Nick who suggested maybe I contact a pro bono legal service to try and set up my own charity. And so Clayton Utes has been with us ever since, and they set up so brave within six weeks. It was insane. It was from having all of that work for probably a good 18 months prior to that, being able to go in and show them footage and photos of what we'd been up to and share story about what people had been through was just, it was so effortless being able to have that conversation at that stage. If I'd gone in 18 months prior and said, I've got this great idea and these are all the things we want to do, it wouldn't have had the same impact, I don't think, because you wouldn't have had the visuals behind it, you wouldn't have had all of that information behind it to really show, oh, this is why there's that gap.
(14:23):
This is why this needs to be. So in setting up any kind of charity, you really have to justify the need because there are like 55,000 charities and not-for-profits in this country and the Australian charities and not-for-profits Commission. They do keep it quite tight and regulated. So if you want to set up a new one, yeah, you do need to be able to justify why do you need a new one? Why doesn't it already exist? Why can't you work with a different existing organization? So yeah, I did consider that a lot myself as well, because I don't like recreating the wheel. And as I said, we'd worked with National Breast Cancer Foundation, I'd done some work with McGraw and Breast Cancer Network Australia. But the thing that I kept coming across was this gap in information and community for younger women. Women diagnosed under 40 because breast screen, which is a fabulous free service in Australia, is available from age 40.
(15:28):
You can go get your mammograms every two years. You don't have to go to a GP to get a referral. You just literally make an appointment and go. There was nothing like for younger women, there was no education around breast cancer risk or how to do breast checks. So younger women were often finding their breast cancers at a later stage, and particularly where they had no family history, which is nine out of 10 women who were diagnosed don't have a family history. There's a huge shock factor too. They're like, well, how come I didn't know about this? How come someone didn't tell me about this? So I feel that all stars were aligning and it just was meant to be. But we definitely do work with the big charities. We definitely, as Kirsten Pilate from Breast Cancer Network, Australia said we hold them accountable. What are they doing for younger women within their organizations and how are they making sure that they are delivering on what they're supposed to be doing as well?
(16:40):
And yeah, it is really important. I think that advocacy piece for us as well, that's really become the underpinning, I think, passion that I have for the organization is being able to speak to people in research, people in medical professionals, government representatives, ministers the like and explain what I'm hearing and the stories from women from across the country. And yeah, it's not always a positive pink and fluffy type of an occasion, and I don't think that I've ever really treated breast cancer like that. The first time I came home from treatment, as I said, I'd been sort of doing a bit of fundraising for breast cancer before my own diagnosis because of my friend's experience. And I came home and I just saw pink ribbon things everywhere, and it actually made me physically nauseous because I thought to myself, what have they done here? Bringing all this into our home? So I think when I created so brave, I really did want it to be quite different to the norm, quite edgy and fussing that art and advocacy, sharing people's voices and the empowerment space. And so yeah, we've tried to continue that into what we are doing. Now. Not everybody wants to do a body paint, which I fully appreciate because it is a huge brave act to do so. But we do have so many young women who go through this who they want to use their story to better the experience for someone else after them.
(18:35):
And so that's why we formed things like our patient advisory group and our ambassadors of whom we've got 64 former and current ambassadors, and we are recruiting now for the next group of ladies that will go through the program. So I think those things all add up to opportunities for people to give back. We have ladies come along to when we go to schools, to present to young women when we go out to universities and present to young women, and we talk to all people. So it doesn't matter if you're a young person, a young woman, an older person, we really do need to get that message out there. This does not discriminate against anybody. It can happen at any age, at any gender, and we really do need to make sure that younger women are able to use their health literacy and health advocacy skills to get an early diagnosis. So yeah, I
Danielle Lewis (19:42):
Love that. Oh my God know. I was like, I'm not saying a thing, I'm not asking a question. This is fantastic. But my question to you now is, so firstly I touching my boobs as we're talking, going shit, I need to check and I'm going to put that in our Spark Slack channel to remind all of our ladies to check themselves out today. What can we do? What can we do to support you? So as somebody who hasn't had breast cancer, who probably doesn't have anyone in my immediate realm, so I haven't been exposed to the experience, what can we do to support this?
Rachelle Panitz (20:22):
Look, I think I always talk to the young women at schools around sharing your story and asking the question, and I think that's probably the most important thing. We all have women in our lives. We've got daughters, sisters, mothers, aunts, we've got girlfriends, women that we work with, and I don't think we about it enough. October with Breast Cancer Awareness Month, there's so much conversation, we all get a bit over it, but this is something that really we need to be talking about every single month. It's like, oh, hey, did you do that check? Have you ever done a check? One of our young ladies from Victoria told me when she was 38, her friend had been to a Breast Cancer Awareness Month event, and they'd started a conversation around, Hey, do you ever check? And Erin hadn't ever checked ever her very first breast check, she found the lump, which was already at stage three and was diagnosed pretty quickly and went straight into treatment.
(21:32):
And I kind of think those little random moments shouldn't be the reason why someone gets a diagnosis. This should be a very common conversation that women have. It is the most commonly diagnosed cancer amongst women worldwide. Australia unfortunately leads the world with one in seven young, all women before the age of 85 will be diagnosed one in seven of all women. And in young women from 20 to 39, it is the most commonly diagnosed cancer. And even more unfortunately, it is the most common cause of cancer deaths in young women. So we need to stop thinking of this as something that somebody else is dealing with. As I mentioned before, nine out of 10 diagnosed cases for women who don't have a family history or a genetic predisposition. So it is not something that just happens for women with a tumor receptor gene or somebody whose mom and grandma and all of the families had it saying that though, if you do have a high family history of any of the gynecological cancers, breast cancer, or if you've got lots of men in your family with prostate cancer or pancreatic cancer, then you should be looking at getting some kind of genetic testing so that you can see what your options are because there are some things that you can do to lower your risk.
(22:59):
But I think on the whole, every single woman needs to be aware of this. Every single woman should be doing a check at least once a month, and women who are of age at 40 plus should be going and getting that free mammogram. So I think starting those conversations, and it's hard, I guess women aren't good at talking about boobs, even though every single one of us has 'em. This is crazy, isn't it? We've all got boobs people, let's talk about them. So I don't understand it, but I think probably media has done a lot of damage in that space and it's been overly sexualized. But really, these are the things that give life to children and every single woman on the planet, and actually every single person on the planet has breast tissue. So I think we need to stop making it so difficult for us to have that conversation.
(23:59):
One of the things you can do is obviously you can organize a little morning tea or an event or something like that. We would love your support. That's always amazing. And if you need any of the resources, you can reach out to us and we can send you some shower hangers or whatever. We also have all of our tips and breast check facts in our calendar that we put out each year. So there's also all of that in there. But yeah, it's a free thing to do that, have that conversation. Pick up the phone, and if you're listening to this and you are over 40, pick up the phone and make the call to breast screen. I'm going to get the number just so that I can share it, the exact right number bar with everybody.
Danielle Lewis (24:45):
We'll put it in the show notes
Rachelle Panitz (24:46):
As well. I'll, it's 13, 20, 50, so super simple, 13, 20, 50, go make your appointment. And if you get pushback because you're over 40, you haven't seen a gp, just make the appointment. Just ask very politely to make the appointment. And they go all over the country. So even in regional rural areas, they'll take the vans. So they often advertise when those vans are coming out, but if you call that number, you can find out where they're going to be and when they're going to be there so that you can book that in. So that's a really important, I mean, I remember seeing not even that long ago, there are places in the world, the United States included, where people fundraise so that you can get free mammograms. We don't have to do that in Australia. We just need to pick up the phone and make an appointment. And having those conversations is free as well. So yeah, having those conversations is really important.
Danielle Lewis (25:47):
You are absolutely incredible. Rochelle, thank you so much for sharing your story with the Spark community. As I said, the first thing I'm doing is posting a note to all of the women in our community because this is so important. And you are right. Having a conversation is free. If you're over 40, you can pick up the phone and make the appointment for free. So this is so important and such a important cause. Thank you for championing it for so many women. I think you're absolutely incredible.
Rachelle Panitz (26:21):
Oh, thank you very much. And thank you for having me on there. It's been great.
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