Season 2 – Episode 2 Third time unlucky – my breast cancer story

Transcript

Hey friends. So this episode, I’m going to share all about my cancer journey,

0:10 how I got diagnosed, what happened and what was going on in my life at the time. So rewind to the end of 2023

0:19 and I just wrapped up two of my group programs, the yoga alchemy program, which is like a seven month group coaching program that I’ve been running for a number of years, and it’s really quite successful, and I love doing it.

And 0:37 I just wrapped that up. It was towards the end of 2023 and I was thinking about 2024, and, you know, starting to plan for the launch of the next round of the program. Just had this feeling in my gut, this sort of intuition of, ah, just delay it for a little bit. You don’t have to start it at the beginning of the year. Just had a feeling that something, something was up, and I listened to that intuitive nudge, and I didn’t schedule that course for when I normally begin it in February. And so the new year rolls around, 2024  and  I remember like nothing major, but we got a number of sicknesses, like my daughter had just started going to day care two days a week. And at the beginning of that year, we’re just like, successively sick with RSV and all of those nice illnesses. And it was just back to back to back. And then I think it was in March. We went on a long overdue holiday, and again, I had this feeling like, Oh, something big is going to happen. Something big is going to happen, and to just keep some space in my life and keep some space in my calendar. So I like delayed enrolling people in that program again, and lots of people were asking me, we had over 100 people on the wait list, it would have been really, really easy to, like, sell out another course, really quickly. But I just have this gut feeling of, no, you need space. You need space. Something’s big is coming, and I was hoping it was going to be something positive.

And so after that little holiday, which I think was at the beginning of, beginning of April, I then had, like, a routine MRI that I get done every year. I wasn’t anxious about it. I wasn’t worried about it. It was just like a thing that you do, like you go get your car serviced. That’s how I sort of get serviced, right?

And  about a day afterwards, I get a text from Queensland X ray saying  your images are available online in the portal. And I thought, Oh, I’ve never had that before. And so I jump online and I go and have a look at the images. And the images that they had of my breast, they had all these circles and arrows on it and measurements and , handwritten stuff on the scan. I thought, oh, that seems a little bit strange to have these areas measured and circled and arrows pointing to. I wonder if my previous scans look like that. And so, you know, my whole history is on this portal. And I started looking back at previous scans, and none of them had these markings on it. And I thought, Oh, this is not good. So I called my doctor, and he was overseas travelling, and they said, Look, he’ll give you a call as soon as he can. And it was, a full 30 hours later, or something like that, that I got the call from the doctor saying, Yeah, look, they found a lesion on the on the scan. It looks like nothing to me, but probably best to get it biopsied. Okay, let’s get it biopsied, because I had a suspicion after seeing those drawings on my scan.

And  one of the things about diagnostics with breast cancer is that  for younger women, women who are haven’t gone through menopause yet, their breasts are a lot denser than post menopausal women, and sometimes the lesions don’t show up in mammograms or ultrasounds, which was the case for me, and I’ll explain a little bit later why that is so. It was detected in an MRI, and I wanted to get an MRI guided biopsy, but that’s a really expensive and complicated procedure, and I had to go and have a ultrasound biopsy first. And I’d had previous history of this whereby I go in for the ultrasound biopsy, they can’t find anything under ultrasound, and it’s like $700 later, and you still don’t have a result. So I said to the doctor, look, this has happened before. Can’t we just go straight into MRI biopsy? He said, No, you can’t. You have to go through this. So I booked in for an ultrasound guided biopsy that took  10 days to get in or something like that. Of course, they couldn’t find anything. Had to go back to the doctor to get a referral for an MRI guideda biopsy.

So I was a bit annoyed already, because I’d been through this before. It happened to me before, where they couldn’t detect it on an ultrasound, and so the doctor wrote me up the referral for the MRI biopsy. I rang up and I can’t get an appointment. There’s only two people in Brisbane who can do that procedure. One of them’s away on holidays at the moment, and I just had to wait and wait and wait.

It was actually five weeks  before I could get that biopsy done and get the result that was, yes, it’s cancer, and that five weeks was absolutely excruciating waiting to find out, do i don’t i What’s going to happen from here?

And this was the third time that I’ve been diagnosed with breast cancer. I first had it in 2015 and then I had it again at the end of 2017  and  like I knew the process. I knew sort of what happens. But in both those instances, it happened really, really quickly. I was, you know, had a had an abnormal scan, had the biopsy, straight away, and then pretty much the next day, was booked in for surgery. This was really, really slow and drawn out, and quite frankly, it really did my head in just that waiting, that uncertainty, that not knowing and kind of expecting the worst, but not knowing really, really did a number on me.

For the first time in my life, I was really anxious. I’m not really an anxious person, but this, you know, really, really peaked, and I was in full Fight, fight or flight mode. I just did anything to keep busy,  like cleaning, cooking, ironing, all these things that I don’t do normally. I hate those things, but just anything to keep busy, lots and lots of exercise, just anything to take my mind off the discomfort. And because I was in that sort of more flight response of wanting to run away and escape, I found being physically active really, really helpful to discharge some of that nervous energy.

So once I got the confirmation that, yeah, it was, it was cancer. I was booked in for surgery, maybe, like a week later, or something like that. Now, because this was a recurrence, it wasn’t a new cancer. It was a returning cancer.  I kind of knew that a mastectomy was on the cards, but I wasn’t really ready for it at the time.

It’s obviously a really big deal, mentally, emotionally, I wasn’t ready for it, and I didn’t really have the support structures in place in my life and my business for me to sort of do that just then. So we agreed with the surgeon just to remove the lump, just get rid of the cancer for now, and we’ll deal with the mastectomy a little bit later. So I had the lumpectomy that was beginning of June, and I said to the doctor, look, make sure you take more than you need. I don’t want to have to go back and do another excision because the margins weren’t clear.

Lo and behold, the pathology comes back. The margins weren’t clear. I needed to have another surgery to remove it all. And so I had surgery, maybe it was 10 days later, or something like that, to remove the lump, and got clear margins. Then it was just, you know, recovery. And then he referred me on to another surgeon because he was retiring, and also a plastic surgeon to talk about having the mastectomy and a reconstruction.

And so about a month later, I met with a new breast surgeon, and she was really lovely, and she sat down and looked me in the eye and said, you need to prepare yourself for having your body parts amputated. And that was when I really just lost it. I really started bawling, and she’s like, this is a big deal. Think of it as if your life’s going to be on hold for two years. That’s how long it’s going to take to recover. Cancer’s got a really, really long tail, and I’m just being upfront with you. So that was pretty shocking, and the type of surgery, or the type of mastectomy that she was recommending was different to what the other surgeon had said. So I was a little bit disappointed that I couldn’t  save a bit more of my breasts than I wanted to. So that was kind of a bit of a shock. And then she also said that the reconstruction would be different from what I was expecting, just because  I didn’t have enough belly fat to take from there, basically. So that was really, really shocking. And I said, Look, I need, I need some time to come to terms with this and to and to make sure I’ve got support, because my partner works away, and, you know, we’ve only got my mum, we don’t have any other grandparents to help out and all that kind of stuff.

Then I went and saw the plastic surgeon about reconstruction, and because I’d already had so much radiation from previous cancers. Implants weren’t possible for me, not that I wanted them anyway, because they require maintenance. It’s not a set and forget thing. It’s kind of something you always have to monitor.

So we talked about using my body tissue to reconstruct the breast. It’s called an autologous breast reconstruction, and we’re going to take the tissue from my thighs. So we talked all through that process and the recovery and all of that, and then I had time to just go home and think and sort of plan it out. And so

we decided that November would be a much better time to do this, rather than in June, because of getting the support in place, and I needed to get a lot of things organized, so I had time then to come to terms with what was going to happen. And again, in hindsight, I kind of wish I got it over and done with in June, because that wait from June till November was excruciating.  Just you know, even though I knew what was going to happen, there was so much fear associated with it, and fear of what if it goes wrong, and how painful and how long the recovery is going to be. I think, in hindsight, I could have just ripped the band-aid off and done it much, much faster, but that’s what I chose at the time, and so I had a lot of thinking time in those few months, and obviously, I am still recovering from the previous surgeries.

So this was actually the third time I was diagnosed, and the first time I was diagnosed was back in 2015 and that one really came out of the blue. So I’d had this, I was experiencing this sort of stinging or burning sensation in my breast whenever I put a seat belt on, or if I was lying on my belly. And at first I just sort of ignored it. It kind of felt like a bee sting. But then it was like all the time, and I thought, Oh, I better go and get this checked out. So I went to the GP and said, Look, this is happening, and I’ve got this family history of breast cancer as well. My mum had breast cancer. Her sister had breast cancer. My dad, at the time, had cancer, and  he was like, Yep, let’s get it. Let’s get it checked out. Let’s go get you have a mammogram. So I had a mammogram, and they had a look at it, and they said, Oh, look, there’s these dense areas, there’s these lesions. We wouldn’t mind biopsying them to just to rule things out. So I booked in for a biopsy in a mammogram machine, which is really, really uncomfortable and painful and they biopsied about six different areas, and the thing that was causing me pain turned out to be a benign cyst, but that actually saved my life, because there were three cancerous lesions there.

And this was just such a such a shock for me. I was young, I was fit, I was healthy, I didn’t feel unwell. And it was also happening at a really challenging time in my life. My dad had stage four cancer, and I was going through a divorce. So it’s really, really, really stressful times. they said, Oh, look, it’s microscopic; it’s less than half a millimetre. It’s just going to be day surgery. You won’t need chemotherapy, you won’t need any  further treatment. It’s just like a really simple lumpectomy. And I thought, okay, I can do that. So I went in, had the lumpectomy. It  was really scary, because they do a procedure beforehand called a wire localization, where you’re awake, you’re in the mammogram machine, and they insert a wire into the area so this surgeon can detect what bit to remove because the type of cancer that I had, ductal carcinoma,  it doesn’t like it’s not a different color. It’s not like they open you up and it’s black or green or anything. It just looks the same. So they need a way of being able to identify and they do it by sticking this wire in. It’s like a coat hanger hanging out of your breast. It’s really uncomfortable. Anyway, I had that surgery. Wasn’t too painful, got the pathology back. Oh, we didn’t get it all. We need to do more. Oh, okay, so I had another surgery, maybe, like a week or two later.  I didn’t have to do that localization, wire localization procedure again, because they put a little chip in there and got the pathology from that. We didn’t get it, or we didn’t get clear margins. So when they remove the tissue, they need to have an area around the tissue, like the edges, that are all clear of cancer to know that they’ve got it all. And I didn’t have that. So, actually, I had to have a third operation to remove it all. And so what turned what started off as being microscopic day surgery, not needing any further treatment, was actually nine and a half centimetres, which is huge

I had three surgeries, and then I had to have 25 rounds of radiation. Fortunately, I didn’t need any chemo, because it hadn’t spread to my lymph nodes. It was caught very, very early. It wasn’t invasive cancer, but I still had to go through radiation, which is  not too bad towards the end, you get very fatigued. It burns the skin, but it’s just a hassle, because you have to go every single day. And that was that. That was 2015 that was sort of July, August, September, 2015 Unknown Speaker 16:00 and then I was clear for two and a bit years. In that time, my divorce was finalized, my dad died.

I’d actually met a new partner. We were dating, and  as part of my sort of surveillance, I had to have annual MRIs  and I’d had an MRI  the year before, so 2016 and they said, oh, there’s a lesion in your other breast. And so I had a biopsy on that, and it turned out to be like pre-cancerous cells, not cancer, pre-cancer. So if you think you’ve got normal cells and then abnormal cells, and then abnormal cells dividing is cancer. So it’s like a stage kind of thing. So I had pre-cancer; it was abnormal cells or atypical ductal hyperplasia,  and so we decided not to operate on it at the time just to monitor it.

We didn’t know if it’s going to turn into cancer. We didn’t know if it was how long it was going to take, but I had this feeling that there was something there. And so about a year later, I had another  MRI. It looked a little bit bigger. We had a biopsy, and it was cancer. So that was at the end of 2017 and this was in the other breast to previous so I had the surgery. Then it was like the Friday before Christmas. They got clear margins, which was good, but it was big. It was over five centimeters. Can’t remember. We’ll have to look at the pathology, which meant that I needed radiation again. It hadn’t spread to my lymph nodes, so I didn’t need chemotherapy, but I needed radiation. So I did another 25 rounds of radiation on that breast, and then after that, so that wrapped up in that was the end of 2017 going into 2018  then I had a period of seven years where I was completely clear and just, you know, got on with life.

It was only recently, in April 2024, so I was just going for a routine MRI and saw a lesion and got a biopsy, and this was a recurrence. So  the second time I got it because it was in a different breast, it was considered like a new cancer. B

ut to have a recurrence after radiation and before the age of 50 is bad.  So , I had to have a mastectomy. There really was no other option for me other than, like, just continuing to chop away at my breasts. I couldn’t have any more radiation. Chemotherapy wasn’t suitable for me, and so like that, that really was my only option. And because there’s a lot of cancer in my family, so I don’t have the BRACA gene, I got tested for that, but I declined further genetic testing because genetic discrimination is real, and I don’t want my daughter or my niece to be denied life or health insurance because I’ve got the gene and the chance that they have it too.

So I declined further testing on the advice of the geneticist  but we did the family tree, and like both parents, both my parents had cancer. Aunties on both side had cancer. Both grandfathers had cancer. There’s a lot in there. And to be diagnosed at such a young age and to have a recurrence is not good. So, yeah, the mastectomy was the only option. And so, you know, this is not my first rodeo I’ve gone through it so many times before, but it doesn’t make it any easier. Just because you know what to expect doesn’t mean it’s going to be an easier ride.

And I think in some ways, it was a little bit worse because I knew what was ahead of me, so I had the Mastectomy in November 2024 and I had an immediate reconstruction using the flesh from my inner thighs. The recovery was horrendous. It was incredibly painful. I think. On the third day after the surgery, they made me get out of bed, and I had to I couldn’t even stand up by myself. I had to use a walker. It was incredibly humbling that I couldn’t walk by myself or stand up or shower myself or toilet myself. I was incredibly humbling.  The pain was was next level. I was really in a lot of pain and a lot of distress, not just my breasts, but my legs as well. I’ve got 15 centimeter scars that run through my inner thighs, and I couldn’t stand up straight, probably for about three months because my legs were so tight, and this affected my whole posture. And then I had this ongoing issues with my neck and my spine being out of alignment, and then I had all these headaches.

But now it’s February 2025, I’ve just had phase two of the reconstruction.  So because they’re not putting implants in, they have to go slow, to slowly build up the tissue. You can’t just whack a whole bunch in there and expect it to stay. It’s like a slow, graded process. So I just had phase two. There probably won’t be one more phase, or maybe another one after that, and then, fingers crossed, I should be done. No more radiation, because I’ve had the maximum dose. I can’t have any more no chemo, because it was always caught early. It was never in my lymph nodes.

So that’s my story. And I think, you know, because I never lost my hair, because I was fit and active, no one realized how sick I was, and a lot of people thought, Oh, you’re too young to have cancer, and it’s just a real reminder that there are invisible diseases out there, and you don’t have to, you know, lose your hair to be really, really unwell. And it’s just a reminder that we don’t know what people are dealing with in our lives.

We don’t know what’s going on in our friend’s lives, or our acquaintance’s lives, or  people we meet in the general public. And you know, that was certainly the case for me where, like, I remember the first time I was diagnosed coming home from the GPS office, where he told me, and just catching a bus home and trying not to cry on the bus on the way home, just try to hold it in. Like you just never know someone might have just gotten the worst news of their life, and they have to keep going. And that’s the thing about cancer that was a really hard lesson to learn, that life doesn’t stop just because you’ve got cancer as much as you want it to stop. The dishes still need to be done, the bins need to be empty, the bills need to be paid, mouths need to be fed. It’s just relentless, and life feels relentless when everything’s falling apart and you just have to keep going. I can report that I’m on the other side.

Now,  yes, it was bad, but it wasn’t as bad as I thought, and I’m going to be sharing a lot more of my lessons, but this session was really just to give you the sort of overall picture of my cancer journey to date and what’s happened and where I’ve been.

So, thanks for listening.

Monica x

Feel free to leave a comment if you have any questions.