Rebecca Smyth will never forget the moment she was told that having her right breast surgically removed was the best option to treat the cancer that had invaded her body.
"It's a pretty devastating thing for your whole self image, your whole feeling about yourself as a person. There were lots of tears," she said.
The university science lecturer and artist underwent a single mastectomy in Darwin in 2018.
Ms Smyth didn't know it then, but she had years of tears ahead of her — tears of grief, loss, frustration and, ultimately, anger as she struggled to get a breast reconstruction.
"I didn't want to be walking around lopsided for the rest of my life," she said.
About a fifth of the 8,000 Australian women who have mastectomies each year due to cancer go on to have reconstructions, a process in which a breast is rebuilt by plastic surgeons using either implants or a section of tissue taken from another part of the woman's body.
But Ms Smyth, like many other women who live in regional Australia, found herself facing a six-year wait for the surgery — up to five times longer than women in capital cities are forced to wait.
Now five organisations representing surgeons and breast cancer groups say that all women who have mastectomies should have access to affordable breast reconstructions if they want them.
And they say a belief amongst the public and some medical professionals that breast reconstructions are merely cosmetic procedures must change.
"I hated having to wear a prosthesis. I absolutely hated it," Ms Smyth said.
"I hated having to remember to bring my body with me. I hated every morning as soon as I got up.
"All it did was just remind me over and over, three or four times a day, of what my body had been through."
Faced with overwhelming grief about what had happened to her body, Ms Smyth began drawing cartoons to help process her feelings about her treatment.
"It’s my place where I could escape the world and get totally immersed in one thing," she said.
"You put the cancer stuff in the picture but after that you think about the picture.
"It allowed me to experience what I was experiencing and then let it go.
"If I hadn't put it into a picture I wouldn't have been able to let it go."
The long road to reconstruction
After her mastectomy, Ms Smyth said she knew immediately that she wanted reconstructive surgery.
But despite desperately wanting a breast reconstruction, Ms Smyth's surgeon in Darwin told her to wait a year, as she was still undergoing chemotherapy and radiotherapy.
Then a different surgeon advised her to wait for another year to ensure the cancer didn't return.
After her second year of waiting, Ms Smyth consulted a doctor in Adelaide, who said she was a perfect candidate for a breast reconstruction.
But she was then told it would take another year before she made it to the top of the waiting list for the surgery.
"After that three years, I rang up and I said, 'Where am I on the waiting list?' And they said, 'It's another three years away'.
"And that was just devastating."
All surgeries are given a priority rating to help allocate scarce public health resources.
If a breast reconstruction is done at the same time as a mastectomy, the entire procedure is given the highest rating.
A breast reconstruction only performed after a mastectomy is given the lowest rating.
"It made me feel angry, really angry. It made me feel like I didn't count. It's not cosmetic. People wouldn't call a prosthetic leg cosmetic," Ms Smyth said.
Ms Smyth had since moved to Adelaide and decided to go into the private health system, and was able to get a breast reconstruction in May this year.
She paid around $8,000 up-front for two surgeons, an anaesthetist and surgical supplies.
She received around $2,500 back from Medicare, and her private health insurance covered her hospital stay.
Now her health is good and the cancer appears to have gone, but she is still angry about how hard it was for her to get the breast reconstruction she desperately wanted.
Post-cancer surgery not cosmetic, says doctor
Australian Society of Plastic Surgeons president Nicola Dean said breast reconstructions had significant therapeutic value and should not be seen as cosmetic procedures.
"The benefits can be psychological, and physical. They help women get on with their normal life," Dr Dean said.
"Delaying it for five years can really impact on their quality of life."
The delay Ms Smyth endured in Darwin to access a breast reconstruction is common for women living in rural and regional Australia, Dr Dean said.
"Sometimes those in rural settings can find it difficult to access a surgeon with breast reconstruction skills," she said.
"The costs associated with breast reconstruction can be prohibitive, especially if you have to travel from rural or remote areas."
Data published in international surgical journal BJS Open in 2017 shows a huge disparity in the rate of breast reconstructions between Australia's capital cities and the bush.
Up-to-date data is unavailable as no single organisation is tracking the number of breast reconstructions performed in Australia, and the last comprehensive figures collected by the Australian Bureau of Statistics were in 2013.
However, Dr Dean said she believed the data would not have changed.
The biggest disparities are in New South Wales and Victoria.
The data shows that in Sydney, 26.7 per cent of mastectomy patients went on to have a breast reconstruction, but in rural NSW that number was just 4.6 per cent.
Similarly, in regional Victoria just 7.3 per cent of women have reconstructive surgery, while in Melbourne 35 per cent of women undergo the procedure following mastectomies.
Dr Dean said no woman should have to wait more than 12 months for a breast reconstruction after a mastectomy, and every patient should be told about options for reconstructions before a breast is removed.
The ASPS, Breast Surgeons of Australia and New Zealand, Breast Cancer Network Australia, the Royal Australasian College of Surgeons and General Surgeons Australia all want an affordable breast reconstruction service available in every capital city by 2025.
Women who are willing to wait years for a publicly funded reconstruction pay no out-of-pocket expenses, but Dr Dean said patient travel schemes did not fully cover the travel costs for people in rural areas to go to a big city for such surgery.
Surgery delays 'horrific': psychologist
For women who want a breast reconstruction, any delay can be terrible for their mental health, according to pscyho-oncolgist Dr Charlotte Tottman.
She is a trained psychologist who works with cancer patients full-time.
Dr Tottman echoed calls for breast reconstructions to be considered part of cancer treatment, and not a cosmetic procedure.
She said not every woman wanted to have a breast reconstruction after a mastectomy, but for some, particularly younger women, it was critically important.
"People are asking what will this mean? Will somebody still find me desirable and attractive?" she said.
"Will I still be able to have the sort of life that I wanted with a partner and perhaps a family."
Dr Tottman said women often had body image issues after a mastectomy that a breast reconstruction could help with.
"To be able to restore your body, not to exactly what it was before, because reconstructive surgery doesn't do it exactly, but to an approximation of what it was before … can be a really important part of adjusting post treatment," she said.
Dr Tottman said delays like that faced by Rebecca Smyth were "horrific".
"It really gets in the way of them being able to adjust and get on with what I call the next chapter of their life, or the next version of themselves, because they remain kind of tethered to the cancer experience," she said.
"It does prevent them from really being able to engage in the rest of their lives effectively."
Minister says reconstruction delays unacceptable
Around 8,000 Australian women have a mastectomy every year, yet only 18 per cent of them go on to have a breast reconstruction.
Some aspects of breast reconstructions are covered by Medicare for private patients, but for patients who do not have private cover yet want to engage a private surgeon to cut their wait times, costs can run into many thousand of dollars.
The data about the rates of breast reconstructions is patchy, in part because there is no dedicated Medicare Benefits Schedule code for the procedure.
Instead any Medicare rebates come from several different item numbers, that are shared with many other surgical procedures, such as fixing a broken leg.
Dr Dean chaired a committee in 2018 which asked for this problem to be fixed.
The previous federal government promised to do that by November 1 this year, but it has since been pushed back.
Federal Assistant Regional Health Minster Emma McBride said the Department of Health was undertaking further consultations about the proposed changes.
She said Ms Smyth's struggle to get a breast reconstruction was unacceptable.
But she said funding for surgeries like breast reconstructions was a state and territory government responsibility.
"No woman should have to wait six years to have these vital reconstructive surgeries," she said.
"I'm determined to make sure no matter where you live, you have access to the care you need close to home."
Rebecca Smyth has collated her cartoons about breast cancer into a collection called Booby Trapped: cartoons about breast cancer (that naturally comic topic!).
Anyone needing support can call the Breast Cancer Network Australia on 1800 500 258.
