DIANE BARKER – TRIPLE NEGATIVE BREAST CANCER & PARTICPATING IN A CLINICAL TRIAL

Being Diagnosed with Triple Negative Breast Cancer

“So, I do remember feeling incredibly tired, like more tired than I had ever felt in my entire life. And yes, I’ve got a busy job, but I just thought maybe something was going on. And actually, my GP and I were about to start a process of, you know, a sleep clinic and doing a sleep study to see what was happening.”

“But I was also, going through a process of having regular mammograms and ultrasounds, because my mum had had breast cancer when she was 59. So, when I turned 40, my GP said we should start doing this for you. So, I’d been doing that for a few years, and everything was fine.”

“I went to my regular scan and that process with the mammogram and the ultrasound and some red flags started appearing. I thought that maybe something might be going on when the technician called the radiographer into the room to have a look herself and I could just see the look of concern that she couldn’t entirely mask on her face. I had to go back for a biopsy, which is when I started to really think that maybe something serious was going on.”

“Then when I got the result from my GP, I was in the middle of a meeting at work and she said, I’m afraid it’s cancer. That was when everything changed for me. It was quite shocking. I was preparing myself for that news, but really nothing can prepare you for news like that. It’s devastating. It’s absolutely devastating.”

“I didn’t know at the time how bad it was and whether I would live or die. There were so many unknowns at that point and it was terrifying. I do remember the first week between when I got the diagnosis, and when I got the final scan done, which demonstrated that the cancer hadn’t spread throughout my body, that week was the most horrifying week I’d ever lived.”

“It was completely uncertain. I knew it had spread to my lymph nodes, but I didn’t know if it had spread anywhere else in my body. So, I didn’t know if it had metastasized. I was terrified, I couldn’t sleep. I had all of my family and my friends around me, but it was such a lonely place. I was the only one who could live this, who could process it, who could really deal with it. And it was lonely.”

“I remember thinking, I knew exactly how my mum felt when she was dying of cancer. It was an awful experience. On the Wednesday after I was diagnosed, I got a call from my medical oncologist with the PET scan results, which I’d had that morning, and he confirmed that it hadn’t spread throughout my body.”

“There was no metastatic cancer. It was stage three, but it was limited to my lymph nodes. And I just remember this enormous sense of relief. I moved from a space of living in fear to living in hope because I thought, okay, there are things that can be done for me. So that’s when all the treatment started.”

Receiving Breast Cancer Treatment

“In hindsight, we put our lives on hold for about two years. We were living in limbo. We were living from day to day and from result to result, treatment to treatment, scan to scan. There was a lot of that. I just had to get through every day during the treatment, the chemotherapy. I was very sick, so some days it was really hard getting out of bed.”

“I still worked throughout the whole process, which in hindsight, I don’t know how I did it, but I did it. I wanted to concentrate on something other than my cancer and I didn’t want the cancer to define me. So, I did work throughout the whole period.”

“My medical oncologist said most people don’t do what you do, but I felt it was important to keep going but at the same time it was really hard. It was a real struggle sometimes to do even the normal activities of daily living. Some days I’d get home from work and I would just collapse into bed.”

“I couldn’t put my daughter to bed. I couldn’t read her a story. I couldn’t eat dinner with the family, couldn’t take the dog for a walk. That there were so many things, so many little things that I missed during that period. It was such a haze of treatment. And I knew, I’d have my treatment on a Monday and I usually feel pretty good on the Monday. But I knew that by the Tuesday morning I’d be feeling pretty low, and it would worsen over a few days and then I would start to come out of it. And that was for the first 12 weeks.”

“The second lot of 12-week chemotherapy infusions were even worse. I had chemotherapy every three weeks. One of the drugs I was infused with is colloquially called the Red Dragon or the Red Devil. It’s this horrible looking pouch of red fluid that gets pumped into you.”

“It’s so toxic that the chemotherapy nurse had to sit by my side the whole time. The protocol was that they weren’t allowed to leave the patient’s side because it was so toxic and there was such a high risk of things going wrong with that drug.”

“So that drug made me feel really, really terrible for about a week and a half after the infusion, and then I’d have about a week and a half where I’d feel okay, and then I’d start the whole process again. So, it was difficult managing all of that, but my family were fantastic. Really great.”

“So, after I finished chemotherapy, I had a short break, but I’d had a scan towards the end of the chemotherapy infusions and it showed that one of my lymph nodes was starting to enlarge again. That caused my specialist’s a degree of concern. So, I saw my surgeon and she said that she wanted to get me into surgery straight away.”

“We were no longer looking at just a lumpectomy. We were looking at a mastectomy of the right breast. That was confronting for me because I was thinking the whole time that the chemotherapy is going to work wonders. I’ve got an aggressive form of triple negative breast cancer, but chemotherapy can work well with aggressive cancers.”

“So, I wasn’t expecting a mastectomy and that certainly had never been the end point for us. We were hoping that it would just be a lumpectomy, so it was quite shocking, but I had to deal with that. And then I realized that it would be better if I just got rid of the cancer. Take the breast off, get rid of the cancer.”

“So, I was pretty scared coming into the surgery. But when I woke up from the surgery and it had been completed, I realized that this actually could be the day that I was cured of cancer forever. My surgeon took all of the breast tissue up to the skin line, there was nothing left. She took 10 lymph nodes out as well.”

“She took everything she could, everything she possibly could, and I felt relieved that she did. I felt an incredible sense of relief. I recovered well from the surgery, and then I spent six weeks recovering from that but really, I bounced back pretty well after a few weeks. Then I went into five weeks of radiotherapy, which I thought was going to be tough, but was actually pretty straightforward for me.”

“I’d been exercising a lot, so I felt good. I didn’t have a lot of fatigue, which is one of the main side effects. My skin coped really well with it, so at the end of five weeks of radiotherapy, I felt great. It was also good because it was during lockdown and I had a reasonable excuse to leave the house every day.”

“So, I was able to drive over to the hospital and I’d get a coffee, it was a good time. I felt really positive. And then after I finished radiotherapy, I was put on oral chemotherapy because the pathology results from my surgery were not good. I had a residual cancer burden score of three, which in medical terms is pretty bad.”

“So, my medical oncologist wanted me to go on oral chemotherapy. I couldn’t get onto it quickly enough, so we started it pretty immediately after I finished radiotherapy. But then because my immune system had been so badly affected by the radiotherapy, I didn’t know that at the time I had a terrible case of shingles, which almost hospitalized me.”

“I was so unwell. That was probably the worst part out of everything because it was just so painful. I’m still suffering some nerve damage from that, but in the scheme of things it’s completely manageable and I’m alive and it’s fine. So, once I recovered from that, I went on oral chemotherapy for six months and that was also fine.”

“We got the dosage right. I had a few issues with the skin on my hands and feet and I lost my fingerprints for a while. They still haven’t completely come back, but they’ll come back in time. And then that was the end of the treatment, six months of oral chemotherapy and then I stopped and then got a PET scan, which was completely clear and that was it.”

“So, it was pretty exciting to finish the treatment after everything I’d been through. I’d done every form of treatment I could, including immunotherapy for 12 months at the same time as the chemotherapy, and the surgery and the radiotherapy. It was also confronting at the same time because the safety blanket I’d had was no longer there, and I still live with the fear that the cancer will come back.”

“It’s a daily occurrence. Every time I look in the mirror, I see physically that I’ve changed. I used to have straight hair and when it grew back after the chemotherapy, it grew back curly like this. So, every time I look in the mirror, I’m reminded of the fact that I’m not the same person and that I’ve been through this experience.”

“It could come back at any time. I had an incredibly aggressive form of cancer. The risk of recurrence is really high during the first five years and I’m coming up to two years in December since my diagnosis, and that’s actually really good for my form of cancer.”

Learning About Triple Negative Breast Cancer

“So, I was pretty naïve about breast cancer before I was diagnosed. I had heard of hormone-related cancers. I don’t think I’d ever heard of triple negative breast cancer, to be honest. And so, when I was first diagnosed and the first specialist, I saw was my breast surgeon, Dr. Kylie Snook, she explained it to me.”

“I was a bit shocked because for whatever reason I had this perception in my mind that breast cancer was a really curable disease. You know, there’s been so much research and so much, attention paid to breast cancer fundraising over the years that I had this perception that things have come so far that this is going to be okay, this is not a problem at all. Breast cancer’s one of the most curable diseases that that we have now.”

“I had no reason to know about the different types of breast cancer and the different subtypes of breast cancer and the particular risks associated with any of them. I was completely in the dark, so to get the news that I had breast cancer for start, and that I had triple negative breast cancer, which is aggressive, which is highly deadly, which has a high recurrence rate, and which has very limited treatment options was an enormous shock and really.”

“It wasn’t what I was expecting when I first started to go through the medical treatment for my cancer. I avoided the temptation of playing Dr Google. I didn’t want to be in that space, so I simply asked a lot of questions of my treating professionals and they’ve all been fantastic.”

“All of them are so caring and empathetic and are so on the cutting edge of medical research that I felt really comfortable using them as my source of information, rather than trying to find things out for myself and working myself up into a state. So, I really trusted their advice and they’ve always given me really terrific advice.”

“But triple negative breast cancer is quite a difficult cancer. It’s often known as the young woman’s breast cancer because it’s not hormone related. I did go down the path of having genetic testing, which was recommended to me because there had been no evidence of triple negative breast cancer in my family.”

“Triple negative breast cancer had no indication in my family that I knew of, but because of my age and no other real risk factors, I was sent for genetic testing.”

“That was a really nervous wait, getting the results for that because I’ve got a daughter, she’s almost nine now, but at the time she was seven going on eight. I’ve also got four sisters and I was really worried for all of us. I was carrying this burden.”

“So, I got the results of the genetic testing and they were negative for any gene. BRCA1, BRCA2, the Angelina Jolie style of BRCA defect that people often hear about. So that was a relief in itself, but it means that no one knows what has caused my cancer, which is concerning in and of itself.”

“And so there needs to be more research into what causes triple negative breast cancer, because if we figure out what causes it, then there’s going to be more of an opportunity to do research into effective treatment. Because that’s the other thing with triple negative breast cancer – chemotherapy, radiotherapy, and surgery are fairly blunt tools when it comes to triple negative breast cancer and that’s why clinical trials are so important in this space.”

Participating in a Clinical Trial

“So, I first heard about Breast Cancer Trials as an organization through the ‘My Journey’ app. I had signed up to that and was going through various articles in the app one day and came across that, signed up and started getting information from the organization, which I found really interesting.”

“But at the same time when I had finished my treatment, my medical oncologist in his own mind, earmarked me as a potential candidate for a breast cancer trial. But I, at the same time, had been thinking that if there was any opportunity for me to give back in some way, I’d be more than happy to participate in a breast cancer trial as well.”

“So, when I finished my treatment and I got my final PET scan, which was negative and I suspected it was negative, but I didn’t know. I went to the appointment with him and when I saw the clinical trial coordinator in his room when I turned up for the appointment, I knew that I was okay because she wouldn’t have been there if the scan had shown any residual cancer.”

“So that was when I started to have the conversation with Associate Professor Menzies and the clinical trial coordinator about the trial that they were wanting to recommend me for. And we had a chat about that, and it involves a drug called Niraparib, which I understand is currently used for ovarian cancer patients and they’re trialing it for breast cancer patients.”

“It’s an international trial. They’re looking to recruit at least 10 individuals from Australia, and I’m going through St Vincent’s and Mater Health in Sydney. I’m actually still only in the screening process. So, there’s a whole process and part of the issue with treatments is they do take a long time to go from clinical trial statement status to market as well.”

“So, I’m being screened for that trial and every three months I get a special blood test, which is only used for clinical trials and it measures the level of circulating tumour DNA in my bloodstream. So, I’ve had three of those blood tests and I’m actually waiting on the third test result as we speak. The first two test results have been negative, which is amazing news for me. It means that there is absolutely no trace, no molecular trace of cancer in my body at all.”

“That could change. It doesn’t mean that it won’t ever happen. If it does change though, it does mean that I will go on the clinical trial immediately and it means that I’ll be able to offer something back to the system that has supported me so well.”

“One of the things that I think about often is the fact that I was given the opportunity to receive immunotherapy, which is one of the really amazing advances in cancer treatment in the last 10 or so years. It works very well for lung cancers and melanomas I understand. And they’re moving it across to other different types of cancer treatment. It’s still in a final stage clinical trial for breast cancer patients.”

“When I first saw my oncologist, I was referred to him precisely because he’s involved in clinical trials, including one involving immunotherapy. He was so confident in the ability of immunotherapy to help me, that he actually wanted me to be on that drug straight away rather than going through the final stages of this clinical trial process because he was so confident that the results were showing such good things for immunotherapy. So that’s why I ended up on immunotherapy for a year.”

“I did have to pay for it, and I was lucky that we were able to manage that because it’s a really expensive drug. It costs about $60,000 for that course of treatment. Most people don’t have access to that kind of money and it really breaks my heart. Whether you live or die or whether you have access to potentially lifesaving drugs, could depend upon how much you earn or what your resources are or how much support you have, you know, the access to medical treatment you might have.”

“It would be really great if that could change, and that’s why clinical trials are so important. We need people to participate in them so that there’s a greater chance of these drugs getting to market, sooner rather than later and hopefully getting on the PBS so that everyone can access them.”

A Message to Supporters

“So, supporters for Breast Cancer Trials are absolutely essential. They’re amazing people for giving time, money and effort to this particular cause.”

“For triple negative breast cancer patients, that sort of treatment was only possible because individuals had donated money to make research into that particular drug possible. That’s why I’m contributing, not only my own resources and I’m volunteering for a clinical trial myself, but I’m also a donor and very proud supporter of Breast Cancer Trials.”

“For that reason, I’ve been lucky that I’ve been able to access the amazing quality of care that I have. Not everyone has access to that and I feel like it’s incumbent upon me to give something back because I’ve had such a good experience. I was very well looked after and I’ve got a really good prognosis at the moment.”

“So, I’m coming up to two years since my diagnosis and I’m feeling probably better than I ever have. I’m fit, healthy, I’m well. I’m cancer free and I want it to stay that way, but I also want the assurance that should anything change in my condition in the future, that there are drugs available or treatments available that can potentially keep me alive and to keep me well for longer.”

“That’s only possible with clinical trials and the clinical trials are only possible if there is funding to make them happen.”

Receiving Support from Family and Friends

“I mentioned that I was really concerned when I was referred for genetic testing that I might be carrying a gene defect, which would mean that they would also be carrying the same gene defect. That was quite distressing to think that we might all end up in the same position. Thankfully, that wasn’t the case. But my family in general have been amazing supporters.”

“When I started losing my hair after the chemotherapy treatment started, three of my sisters shaved their heads for me, which was huge. It was absolutely amazing. They’ve been an incredible support to me and I don’t think I could have gotten through it without all of my family. It also meant that I was very, very firm with them about making sure that they themselves went straight to their GP’s and got referrals to get scans to make sure that they were okay.”

“I remember thinking at the time, I’m glad that I’m the one going through this, because I don’t want any of them to go through this. I love them too much. They’re too important for me. I’m the strong one, I can do this. And I did, I got through it. And I don’t want anyone else to go through it, even if doing this can save one person’s life, then it’s worth it because it’s the most awful traumatic and devastating thing to have to go through.”

“I certainly don’t want my sisters and especially my daughter to ever have to go through this. And in terms of my daughter, she’s almost nine. She’ll turn nine on New Years eve. I remember speaking to the genetic counsellor and the potential risks that my daughter might face if I was carrying one of the gene defects and I was really concerned about that.”

“Even before I had the results, she gave me a level of reassurance that notwithstanding that I might be carrying a gene defect myself, the chances that it would impact her in the same way as me, were less because it was likely that scientific developments would mean that the impact on her would probably be very different. Because we would know a whole lot more about those gene defects, we would know a whole lot more about the types of cancer that those gene defects would cause.”

“So, it made me look forward to a time where we can potentially treat these sorts of cancers much more easily with less side effects, less intervention, and with a great deal more hope than we might currently.”

“My husband has been my absolute rock throughout all of this. He’s done everything he can to help me physically and emotionally cope with the cancer. A couple of months before I was diagnosed, he took up mountain bike riding and he’s really into it. And when I was diagnosed, I still encouraged him to do that because he thought that he couldn’t do those sorts of things anymore. And I said, no, no, no, you need to keep doing that.”

“So, he gets up at 5am every Saturday and Sunday morning and goes off and rides for a couple of hours. It’s been fantastic for him and it’s been his way of meditating. So, when I was diagnosed, my husband and I spoke about how we were going to tell my daughter because we knew we would have to tell her.”

“We knew I was going to lose my hair and I’d be going to doctor’s appointments all the time. So, the fact that I was unwell was going to be pretty obvious to her. So, we got some help from her school counsellor. He gave us some resources, which were really helpful. There was one book in particular called ‘My Mum’s a Superhero’, that we sat down one Saturday morning, about two weeks after the diagnosis and we read it to her, and then we spoke about what was happening.”

That actually went a lot better than I expected. She didn’t want to ask a whole lot of questions at the time, but then we subsequently realized that what she was doing was internalizing a lot of it. So, we knew she was saying things to her friends at school and some of her teachers. I’d get messages of support from parents of the kids that she was playing with, and some of the teachers. A couple of the girls that she played with at school would ask me about the wig that I was wearing, and so we knew she was talking about it.”

“She’s very empathetic, so we were worried that she was not dealing with it well, and she did have a few episodes where she’d have panic attacks about dying, and that was linked to all of this. But she has come through it reasonably well.”

“One day, it wasn’t that long ago, I think it was after I got one of the PET scan results, she had been at after school care, and she made a beaded bracelet for me that said ‘MUMCF’, and I asked her what that meant and she said it means ‘mum’s cancer free’. So, she’s thinking about it. She’s pondering it.”

“She doesn’t always externalize it, but we are quite open with her about what’s going on. So, I took my daughter to one of my follow up appointments with my surgeon a couple of weeks ago, and it was the first time that she had seen the reconstruction and the scars, and she was okay with it.”

“We actually sat in the waiting room and she flicked through a coffee table book, which had been produced with really beautiful photographs of people who had gone through breast cancer treatment and who had mastectomies as well. And so, we used it as an opportunity to talk about what had happened to me. I said, well see this picture here, that’s what mummy looks like at the moment.”

“At first she was a little bit freaked out, but then when my surgeon explained what was going on and she gave her a breast implant to play with because kids love those fidget toys at the moment, she was fine about it and she actually thought it was pretty cool.”

“So, she’s taken it a lot better than I expected that she would. And my husband and I just take it one day at a time and we are there for her. We’re there for each other. I think that’s the main thing. It’s not been easy, but we do our best.”

Boston the Rescue Dog

“So, Boston is a rescue dog that we got during lockdown, so before I was diagnosed with cancer. He’s a cattle dog, cross staffy, cross greyhound, and a whole bunch of other things. I always knew dogs were amazing, but getting Boston made me realize how perceptive they are. So, there were some days when I was too sick to even get out of bed and he just laid at the end of the bed with me for the whole day and wouldn’t move.”

“He follows me around everywhere, one of my favourite things to do is take him for a walk. We love that time together. He’s been a great comfort for my daughter and for my husband as well, and he really is part of the family. There really is something I think in the idea of dog therapy. I really do believe in that.”

Diane’s Hopes for the Future

“It’s a really good question. My greatest fear is that the cancer will come back. It’s something I live with on a daily basis. It never goes away, and I think that that is not an uncommon situation for cancer sufferers of any persuasion. The fear that you could be living well and feeling healthy at one minute, and then the next day you might get devastating news that the cancer has returned.”

“With my type of cancer that is a very real prospect in the first five years after diagnosis, and I’ve come to face that and accept that. And so, what I do is not dwell on that. I focus on the positives in my life. I have a wonderful family, a husband, a daughter, a dog, my extended family. I’m passionate about my work. I see hope and beauty in the small things, all the birds that I hear in the morning, I get woken up by them every morning before my alarm and I often just use it as a time of meditation where I can just listen to nature.”

“Nature bathing is a thing I have discovered throughout this process and it’s something I talk to my acupuncturist about all the time. I like doing Tai Chi exercise and just reveling in the small pleasures of being alive.”

“So, my hope for the future is that there will be further positive developments in terms of breast cancer treatments, and I really hope that they will make a practical difference, not just to me, but to other sufferers of this dreadful disease because it has so much potential to devastate lives.”

“And if we can get to a point where treatment is able to provide more hope, particularly for the rarer cancers and the cancers that are more aggressive, then I think that will be a good thing. So, I hope that I get to see my daughter finish high school, graduate from university, make a life for herself. I hope to retire with my husband down the south coast on a little plot of land with a tiny house. I hope to spend more time with my extended family.”

“My brother was recently diagnosed with prostate cancer and it does make me wonder about what’s going on in my family. But I hope that he recovers just as well as I have. And I just hope to live a happy, fulfilling and very, very long life.”