Rebecca Smith will never forget the moment she was told surgical removal of her right breast was the best treatment option for the cancer that had invaded her body.
“It’s quite destructive to your whole self-image, to your whole sense of yourself as a person. There were many tears,” she said.
The university science lecturer and artist underwent one mastectomy in Darwin in 2018.
Ms. Smith didn’t know it at the time, but she had years of tears ahead of her – tears of grief, loss, frustration and ultimately anger as she fought to have her breasts reconstructed.
“I didn’t want to walk sideways for the rest of my life,” she said.
About a fifth of the 8,000 Australian women who have a mastectomy for cancer each year have reconstruction, a process in which the breast is rebuilt by plastic surgeons using implants or a piece of tissue taken from another part of the woman’s body.
But Ms Smith, like many other women living in regional Australia, faced a six-year wait for the operation – five times longer than women in capital cities have to wait.
Now, five organizations representing surgeons and breast cancer groups say all women who have had a mastectomy should have access to affordable breast reconstruction if they want it.
And they say the public’s and some health professionals’ belief that breast reconstruction is merely a cosmetic procedure needs to change.
“I hated having to wear the prosthesis. I absolutely hated it,” Ms Smith said.
“I hated having to take my body with me. I hated every morning as soon as I got up.
“All he did was just remind me over and over, three or four times a day, what my body had been through.”
Faced with overwhelming grief about what had happened to her body, Ms Smith began drawing cartoons to help her understand her feelings about the treatment.
“It’s my place where I can escape the world and immerse myself completely in one thing,” she said.
“You put things about cancer in a picture, but then you think about the picture.
“It allowed me to feel what I felt and then let it go.
“If I hadn’t put it in the picture, I wouldn’t have been able to let it go.”
A long way to reconstruction
After her mastectomy, Ms. Smith said she immediately knew she wanted reconstructive surgery.
But despite her desperate desire for breast reconstruction, Ms Smith’s surgeon in Darwin told her to wait a year as she was still undergoing chemotherapy and radiotherapy.
Another surgeon then advised her to wait another year to make sure the cancer wouldn’t return.
After a second year of waiting, Ms Smith consulted a doctor in Adelaide who said she was an ideal candidate for breast reconstruction.
But then she was told it would be another year before she was first on the surgery waiting list.
“After those three years, I called and said, ‘Where am I on the waiting list?’ And they said: “Three more years.”
“And it was just devastating.”
All operations are prioritized to help allocate limited healthcare resources.
When breast reconstruction is performed at the same time as a mastectomy, the entire procedure receives the highest rating.
Breast reconstruction, which is performed only after a mastectomy, receives the lowest score.
“It made me angry, really angry. It made me feel like I didn’t count. This is not cosmetics. People won’t call a prosthetic leg cosmetic,” Ms Smith said.
Ms Smith has since moved to Adelaide and decided to switch to the private health system, and was able to have breast reconstruction in May this year.
She paid about $8,000 up front for two surgeons, an anesthesiologist and surgical supplies.
She got about $2,500 back from Medicare, and her private health insurance covered her hospital stay.
She is now in good health and the cancer seems to be gone, but she is still angry about how difficult it was for her to get the breast reconstruction she so desperately wanted.
Surgery after cancer is not cosmetic, says the doctor
Australian Society of Plastic Surgeons president Nicola Dean said breast reconstruction had significant therapeutic value and should not be seen as a cosmetic procedure.
“The benefits can be psychological and physical. They help women continue with normal lives,” Dr. Dean said.
“A five-year delay can really affect their quality of life.”
Ms Smith’s delay in Darwin to access breast reconstruction was common for women living in rural and regional Australia, Dr Dean said.
“Sometimes it can be difficult for people in rural areas 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 a rural or remote area.”
Data published in the international surgical journal BJS Open in 2017 shows a huge difference in the rate of breast reconstructions between Australian capital cities and the bush.
Up-to-date data is not available as no organization tracks the number of breast reconstructions performed in Australia and the last complete 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 differences are in New South Wales and Victoria.
The data showed that in Sydney, 26.7 per cent of post-mastectomy patients underwent breast reconstruction, but in rural NSW the figure was just 4.6 per cent.
Similarly, in regional Victoria only 7.3 per cent of women undergo reconstructive surgery, while in Melbourne 35 per cent of women undergo the procedure after a mastectomy.
Dr. Dean said no woman should wait more than 12 months for breast reconstruction after a mastectomy, and every patient should be told about her reconstruction options before having her breast removed.
The ASPS, Breast Surgeons of Australia and New Zealand, Breast Cancer Network Australia, the Royal Australasian College of Surgeons and General Surgeons of Australia all want affordable breast reconstruction services to be available in every capital city by 2025.
Women who are willing to wait years for state-funded reconstruction pay without out-of-pocket costs, but Dr Dean said patient travel schemes did not fully cover the cost of traveling for people in rural areas to travel to a big city for such surgery.
Psychologist: Operation delays are “terrible”.
For women who want breast reconstruction, any delay can be terrible for their mental health, according to psycho-oncologist Dr. Charlotte Totman.
She is a psychologist by training who works with cancer patients full-time.
Dr Totman echoed calls for breast reconstruction to be seen as part of cancer treatment rather than a cosmetic procedure.
She said not every woman wants to have breast reconstruction after a mastectomy, but for some, especially younger women, it was important.
“People are asking, what is this going to mean? Will someone still find me desirable and attractive?” she said.
“Will I be able to live the life I wanted with a partner and possibly a family?”
Dr. Totman said that after a mastectomy, women often have body image issues that breast reconstruction can help with.
“Being able to restore your body to something other than what it was before, because reconstructive surgery doesn’t do that exactly, but something close to what it was before … can be a really important part of post-treatment adjustment,” she said. . said.
Dr Totman said the kind of delays experienced by Rebecca Smith were “appalling”.
“It really prevents them from adjusting and moving on to what I call the next chapter of their life or the next version of themselves because they remain attached to the cancer experience,” she said.
“It prevents them from really being able to effectively deal with the rest of their lives.”
The minister considers it unacceptable to delay the reconstruction
About 8,000 Australian women have mastectomies every year, but only 18 per cent of them have breast reconstruction.
Some aspects of breast reconstruction are covered by Medicare for private patients, but for patients who do not have private insurance but want to see a private surgeon to shorten the wait time, the costs can be many thousands of dollars.
Data on the incidence of breast reconstruction are mixed, in part because there is no specific Medicare benefit schedule code for this procedure.
Instead, any Medicare rebates come from several different item numbers that apply to many other surgical procedures, such as fixing a broken leg.
Dr. Dean chaired a committee in 2018 that asked to address the issue.
The previous federal government had promised to do this by November 1 this year, but it has since been delayed.
Federal Assistant Regional Health Minister Emma McBride said the Department of Health was conducting further consultation on the proposed changes.
She said Ms Smith’s fight for breast reconstruction was unacceptable.
But she said it was the state and territory government’s responsibility to fund operations such as breast reconstruction.
“No woman should have to wait six years to have these vital reconstructive surgeries,” she said.
“I’m determined to make sure that no matter where you live, you have access to the care you need close to home.”
Rebecca Smith has collected her cartoons about breast cancer into a collection called Landmine: Cartoons about breast cancer (this is naturally a humorous topic!).
Anyone who needs support can call the Australian Breast Cancer Network on 1800 500 258.