For Amy, a clinic nurse at Mater Private hospital in South Brisbane, she has had the unique experience of understanding the hospital system as both a patient and a carer.
She believes that as a nurse, she had a deeper understanding of advocating for her health and wants to use her story to ‘empower’ other women to learn how to do the same.
In February of last year, as coronavirus became evident in Australia, Amy, at 27 years old, had found another health scare to be fearful of. She notices pain under her breast and that she had unexplained weight gain.
I’m a nurse, so I held my breath to see if the pain would go away and it didn’t, so as a nurse, I knew it wasn’t lung-related, and I decided to try to feel for something and I only felt a lump when I pushed hard. I couldn’t feel it standing only lying down.” Her husband said it felt like marble.
She booked in with GP the next morning who said he believed it was a cyst because it was unlikely to be cancer at her age and that she was ‘imagining it’ because of her job and family history of hereditary cancer. She insisted on getting a scan, and he approved her for an ultrasound. Amy wanted the process to run as quickly as possible to be free from anxiety. So she called multiple pathology clinics until she found one that would take her within a couple of hours.
After undertaking an ultrasound, she then received a call an hour later from the clinic to say she had to come in for an emergency mammogram and core needle biopsy the next day. Working as a nurse and understanding the procedures, she balled in tears when she walked into hospital that day.
On Monday, she cancelled work because she was anxious about her test results. At 8am that day the GP called to say, ‘you have cancer’. “I was balling with my husband on the bed. I cried for 30 mins non-stop, then I went into nurse mode. I called my friend, who is a breast care nurse who then organised a meeting with a surgeon of my choosing”.
Being a nurse at the hospital, she was being treated, meant that she had priority as a patient and thus had a double mastectomy within 48 hours of being diagnosed. She had been advised she should have a single mastectomy but insisted on having the double “for peace-of-mind because I didn’t want to live in fear that I would later get cancer in the other breast”. She wishes she hadn’t done it all so quickly because she was in such a whirlwind. “I had to tell everyone from work that I had cancer before I had even registered it because they would find out on the surgery list otherwise”.
She had a pet scan the next day and found it nowhere else in her body. She then underwent fertility conservation to freeze her embryos. When Amy asked the doctor whether to test her embryo’s for the BRCA mutation, he said, “We have a vaccine for cervical cancer already, so we don’t know where we will be in the future. Don’t bother testing them because if they’re all affected, then you wouldn’t have more children and would you abort a child because they have the chance of having cancer.” She says it was a lot to think about.
She had 5 months of AC chemo and Taxol, where she shaved her hair to raise $3000 for breast cancer. She says that undergoing treatment during a global pandemic was hard both mentally and physically. Partway through I became depressed because the family were too scared to visit in covid. She says that mentally the most challenging point was going into the double mastectomy. “After I came out of surgery, I cried, and that was the last time I cried because I mourned before it happened… I didn’t understand depression, anxiety and all these other things until I went through it myself. I can empathise with patients more now.”
She says that after treatment, being bald and going back to work was hard because she had to repeat to patients all the time that she had cancer and she would be in pain for 2 hours of her four-hour shift because she found it hard to be on her feet. She now has tissue expanders to prepare for future breast reconstruction. “In the car the other day, I had a cry realising what had all happened to me. There was a woman who had a mastectomy on the ward, and she had a crash bleeding and had bled internally and was taken to emergency surgery. So often, I am reminded of what happened to me or could happen to me.” Amy believes it was the right decision to go through treatment at the hospital she works because it meant she trusted everyone working there.
When asked how she feels now, she says, “I live an authentic life now where I know what is trivial and what isn’t.
People think because your hair is back, you aren’t affected, but you are changed for life.
I want to use my story for good and get women to really advocate for themselves. When you get your breast exams, your doctors are meant to send you to the breast clinic and often GP’s don’t send you because they think you’re too young. Also, I want them to know the importance of having your genetic test done and the fact that you can do it from home with a color test is amazing. Know your family history.”
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