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Consumer Perspective: Breast Cancer

I was diagnosed with breast cancer in August 2019. I was 46 and lead a fit and active lifestyle. On a normal weekday, I was getting ready for work and rushing around.

I got out of the shower and I’d just bought a new freestanding mirror. For some reason, I thought, ‘I'll go and have a look at myself in the mirror.’ I stood there and saw this sort of dimpled skin up above my right breast and went, ‘Holy hell!’, and instinctually grabbed my breast and found quite a large lump.

That was on a Wednesday. By the Friday, I had a diagnosis. I went through the Melbourne Breast Unit in East Melbourne and had a huge number of tests. I was diagnosed with an aggressive type of breast cancer called triple positive. It was both hormone receptors positive and HER2 positive. I started chemotherapy less than a week later. It was a massive whirlwind. It happened so quickly. From one week to the next, my whole life changed.

I had 16 rounds of chemo. Then I had surgery, an advanced lumpectomy. I was very fortunate that the chemo and the targeted Herceptin therapy helped dissolve the six-centimetre lump away, so I didn't have to have a mastectomy.

That was followed by 20 rounds of radiation therapy and then I had my final Herceptin infusions for six months. All up, I was in active treatment for around about 15 months until November 2020. I had the port removed out of my arm and now I’m on Tamoxifen daily for at least five years.

I didn't have any family history of breast cancer. I had genetic testing done and there was no predisposition. Something that I learned a lot about, during my experience with breast cancer, is that the consumption of alcohol has quite a strong link to [the disease]. And, unfortunately, for a lot of us who have grown up in Australia, there's a massive binge drinking culture. It's very normalised. We don't get enough repetitive information about the real dangers. So, we actually go into life with a whole set of thoughts and behaviours around alcohol that aren't healthy. I was a binge drinker for many years. I'd go for months without drinking and didn’t drink much during the week. It was the weekends or social events that provided the opportunity for blow outs. Funnily enough, I decided to stop drinking a couple of months before my cancer diagnosis and I haven’t felt the need to drink alcohol since.

Prior to my diagnosis I worked in PR and marketing for 20-plus years. After going through cancer I decided I wanted to pursue other things. I resigned from my job in June last year and I’m working on more than one business venture born out of my experience with breast cancer. I’ve recently started My Breast Friend and plan to launch a range of self-care products that will help to generate awareness around the importance of regular self-checking. I’m also undertaking a coaching accreditation which focuses on assisting people to look at their relationship with alcohol and make more conscious decisions around their drinking.

From the beginning of my treatment there were a lot of doctors involved. There's your oncologist, your surgeon and your radiation therapist. I felt like [the treatment plan] was straightforward and easy to understand. I felt very comfortable with the type of breast cancer I had and the pathway for my treatment, from that perspective. Although, I did feel for me, on a more spiritual level, it was hard to grasp chemo and putting all these toxins into my body.

I knew [chemo] obviously had benefits and scientific [evidence for] my best-case scenario with breast cancer. But, right from the beginning, I felt like the missing link was a health advocate or a breast cancer advocate, who was there as my representative, understanding the type of person I was, what my priorities were and how I wanted to approach my situation from a more holistic perspective. That's not what your doctors really do for you. They focus more on your treatment. They give you a bit of information about diet and exercise but there's not a huge focus on it. The breast care nurse was great, but again, they're extremely busy. And, it's not necessarily holistic stuff where they're at, either.

So, I think that everyone who's going through breast cancer brings their own unique personality, lifestyle, hopes and dreams, to their diagnosis. And, sometimes it's hard to create your own pathway. I did take control of my health and my diagnosis and choices. But, I think for a lot of people, that would be really tricky. It’s definitely [getting] that peer to peer [support] that’s really important. It's [about] a shared experience, someone who's listening and understands.

There were other things, too. I would have loved a plan that was put together in a folder and presented to me as Kathryn Elliott’s breast cancer diagnosis and treatment plan. Instead I received lots of different bits of paper with my diagnosis, results, and so on. It was hard work to get through all that stuff and find things. I'm actually shocked that it's not there in this day and age. I'm really surprised that you're still getting your doctors just writing on a bit of paper and handing it over. There's not something that's really coordinated as a plan [to the patient].

The other thing is also an estimation for all financial costs up front, so you know what to plan for. That is something that I think is really important and I was not able to get that information at the beginning. Because financially it was a very costly exercise, even through the private health system. Radiation therapy costs a few thousand dollars, but it's all the tests and things that add up at the beginning. The targeted therapy I had would have been, out-of-pocket, $15,000. Luckily, my health insurance covered the cost. But that's not true for everyone. And that increased the chance of the cancer not coming back by quite a large percentage. Not everyone can get access to that drug without the cost, because it's not a PBS item yet.

Lastly, I think the part where there's the biggest gap is at the end when treatment finishes. There's quite a lot of access to doctors and hand holding along the way. But then once you've finished, you’re kind of let go. It feels like, ‘Oh, wow, I've just actually gone through a massive thing in my life. And I've achieved quite a bit in that I've got through treatment. I know I'm through cancer, and then it kind of feels a bit weird that you're then kind of, “Okay, we'll see you in three or six months.”’ One of my girlfriends has just finished treatment in the public health system. She doesn't know what’s next. She hasn't been told when to come back. She’s been left in the dark a bit.

Kathryn Elliott documented her experiences with breast cancer on Instagram @healingbreastcancer


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