WAITING for the results of a genetic test, Kathryn Simms' instincts told her to prepare for the worst.
"I knew prior to having my test, I just knew I had it," Ms Simms said of carrying the BRCA2 gene mutation.
"It was just this feeling.
"I had already decided that I would have a double mastectomy if it came back positive.
"I did not want to spend my whole life making appointments and having scans and hours of other tests and being worried all the time.
"I didn't want to put my daughter in the position where she would have to sit next to me while I waited for chemotherapy.
"I was not frightened I was going to die, I was frightened my child would have to look after me. I wanted to take hold of my risk."
Ms Simms, 35, is sharing her story to help raise awareness and advocate for what she believes is an under-represented corner of the breast cancer community: those with gene mutations who take preventative action to mitigate their increased risk of breast and ovarian cancer.
Ms Simms, a single mum from Mayfield East, had a prophylactic double mastectomy with immediate reconstruction last March and said she faced judgement from people who didn't understand the reasons for her decision and questioned undergoing surgery "by choice".
"People ask 'Why fix something that isn't broken?'" she said.
"Well, don't you clean your teeth so you don't have cavities?
"I'm not advocating for everyone to get their breasts chopped off... but those who choose to take their health into their own hands, they don't do that lightly."
The federal government's Cancer Australia website said people may consider preventative mastectomy if they have a strong family history of breast cancer and/or if genetic testing suggests a strong likelihood they may be diagnosed with breast cancer in future.
It labelled the surgery a "big decision".
"It involves much consideration, consultation with healthcare professionals and genetic counselling."
Ms Simms said she hoped to be a "representative for preventative health".
"I'm not a model or a celebrity of any kind, I'm as average as they come," she said.
"But I'm more than happy to stand up and say 'It's okay to make a decision about your own health and be in control of that'.
"You're allowed to have peace of mind.
"Preventative health and preventative surgeries are not just for people with private health insurance who feel they are too busy to get cancer.
"There's more to preventative health than losing weight, quitting smoking or fads like drinking dandelion tea."
Ms Simms doesn't begrudge the much-needed support given to cancer patients, but said she felt isolated navigating the health system.
She said she didn't have access to services available to cancer patients despite having similar surgery, including managing appearance-related side-effects; community transport between appointments; and access to accommodation during treatment.
"I didn't know if I needed special bras after surgery for example," she said.
"There were a lot of questions I did not ask before I went in because I didn't think of it.
"We really need a caseworker to guide us through the process, someone who knows the ins and outs.
"I don't understand why we're putting all this money into research and for prevention, but who is at the coalface helping people like me deal with daily life?"
Ms Simms decided to take a genetic test in 2013 after her aunt, Penny, developed a different type of cancer in each of her breasts over 10 years.
She - and Ms Simms' mother Alison - were found to be carrying the BRCA2 gene mutation.
Ms Simms received her results around October that year and was referred to see a gynaecologic oncologist and breast specialist.
As a public patient, she waited nine months for an appointment with the oncologist. He recommended she return if she was putting on weight, felt bloated or had abnormal periods.
She paid as a private patient to see a breast surgeon who advised against the reconstruction she had asked about, to turn stomach fat into breasts.
He said she was too young, overweight and recovery would take about six months.
He suggested seeing another breast surgeon and having an implant based reconstruction.
She was told recovery would take about six weeks, in which she planned to catch up on studying for her early childhood education degree.
She said she did not have a "piece of bacteria on a speck of dust" sized inkling of worry that anything would go wrong.
In the meantime, she joined a clinical trial and spent two years having frequent MRIs and mammograms, which led to "scanxiety".
"Generally when you're seen for a scan it's because something is wrong," she said.
"You're already in the mindset of 'What if'. You know you're at higher risk, you're sitting there in the waiting room surrounded by sick people, knowing at any point they could find something there.
"You have anxiety waiting for the results. Then, if I develop something in the next six months will it be too late when they find it?
"You feel like you should have peace of mind, but it's not peace of mind knowing that it's very possible the tiniest thing could be missed."
Ms Simms underwent her mastectomy in March 2018 in Maitland Hospital.
Taking the dressings off seven days later, doctors found her right nipple was necrotic, or dying.
She was rushed to the Calvary Mater Hospital and underwent surgery the next day to have the implant and the dying tissue removed and an expander inserted.
She went home after four days and a nurse visited daily to change the dressing.
But 72 hours after she was discharged she was in severe pain.
Ms Simms had an infection in her breast and two deep vein thrombosis clots in her right leg.
She again returned to the Calvary Mater and underwent surgery to remove the expander and infected tissue.
She spent 72 days attached to a machine that would flush the wound every three hours.
She was transferred back to Maitland Hospital and had 12 surgeries - one every three days - to remove infection.
Ms Simms was treated with piperacillin or tazobactam and suffered the rare side effects of neutropenia or an increased vulnerability to infection, as well as DRESS syndrome, which is a potentially life-threatening hypersensitivity reaction.
She was rushed into intensive care as her skin grew more and more red.
"It was like a chemical burn, like I was burning from the inside out," she said.
"The only way to treat it is with wet dressings, so I was slathered in lotions and moisturiser, wet sheets, pillow cases over my arms and legs, draped in more wet sheets and blankets and then put in a chair and covered with a space blanket.
"I did this for two hours at a time, three times a day for five days. My tongue peeled, as did skin inside my ears."
Ms Simms then returned to the ward and had further surgery until there was no infection left.
She was sent home around July last year with an open wound and received treatment to help it heal until she had enough skin to sew together.
Ms Simms spent 94 days in hospital, including 67 consecutively and five in intensive care.
She said she doesn't regret her decision, but may not have proceeded with her type of mastectomy if she had known about the unexpected complications that lay ahead.
She lives with post traumatic stress disorder.
"I might have waited, I might have had a mastectomy without reconstruction - there are a few options I could have chosen if I knew.
"However nobody could have predicted what happened to me could possibly happen."
Ms Simms has chosen to show the chest wound she describes as a "shark bite" to the Newcastle Herald.
"I want people to see this and go 'That's what I look like'," she said.
"I want these images to resonate with others to go 'I'm not alone' and not feel like their doctor's problem child."
Ms Simms will travel to the Prince of Wales Hospital in Sydney for surgery in the next few months to construct a new right breast from stomach fat, the procedure she had wanted originally.
"I'm trying to stay focused but it's hard," she said.
"I never pictured myself as having a uni boob.
"I want to be symmetrical.
"I think it will give me closure rather than looking at myself going 'What did I do?'
"I don't hate it, I'm not shocked by it anymore, I just don't recognise it as being me.
"I'm not trying to achieve something that wasn't there before, just trying to be more comfortable with what I see."
Ms Simms tries to focus on the positive aspects of her journey.
She has become involved with Pink Hope, which supports and educates families at risk of breast and ovarian cancer; organised a charity event; befriended others; met nurses who were "beyond kind" and has a new perspective on life.
She said her risk of getting breast cancer was now probably the same as winning the lottery.
"I'm a better person for it," she said.
"I can see the trees for the forest and I appreciate the little things.
"I'm grateful for what I have and am able to focus on the future, rather than feeling I am an [impending] burden on society."
- To connect with Ms Simms, visit https://www.instagram.com/bold_brca_journey/
- Pink Hope will hold an information and support day in Sydney from 9am to 4pm on October 20. It includes expert speakers, personal stories, discussion about options for risk management and time to connect with others. Details: https://pinkhope.org.au/events/nsw-pink-hope-information-and-support-day-2019/