Breast cancer patients waiting years for reconstruction surgery: 'It destroyed me'

• Breast cancer patients are waiting years for delayed reconstruction surgery following mastectomy at public hospitals.
• Some distressed women cannot get a specialist appointment.
• Many patients are resorting to crowdfunding, personal loans or using savings to pay for private reconstructions that cost tens of thousands of dollars

Soon after surgery to remove her left breast, cancer patient Ruby Wallace was so repulsed by her body she covered every mirror in her bedroom and refused to shower.

The operation had saved her life and ruined it too.

The mother-of-three felt disgusted, depressed and desperate.

"It made me feel physically ill every time I saw it. It made me want to spew. I covered all the mirrors in my bedroom so that I didn't ever have to accidentally see it. I was down to having one shower a week, just so I didn't have to take my clothes off," she said.

"It messed with every aspect of my life. It destroyed me."

Wallace was diagnosed with cancer in June 2023 and had a single mastectomy two weeks later at Waikato Hospital.

She was ineligible for an immediate breast reconstruction because she was a smoker, despite a pledge to quit, although staff advised in clinical notes that "the door is still open for delayed reconstruction at some stage if she manages to quit smoking".

After the surgery, Wallace's repeated efforts to book a specialist appointment at Waikato Hospital were met with rejection.

She was told the hospital was "unable to offer appointments for consideration of elective breast procedures at this time due to severe ongoing resource constraints".

In August, clinic staff told Wallace they were happy to put her on the wait list, but in January she was told the plastic surgery department was not accepting new referrals for delayed reconstructions because of "resourcing capacity constraints".

Angry, upset, confused and frustrated, Wallace's feelings of self-loathing intensified.

"Now I was classed as cancer-free I wasn't important. It sent me into a massive spell of depression. Even if it was a five-year waiting list, all I wanted was to go on that list," she said.

In the end, Wallace resorted to raffles, a Givealittle page and a $30,000 loan from her sister to fund a $55,000 breast reconstruction through the private system earlier this year.

She was devastated asking people for money and angry she could not get "straight answers" or the surgery she so desperately wanted through the public system.

"I'm not one to ask for help, I'm not one to ask for hand-outs. It was really frickin' hard. I would love for the system to help people instead of ruining people's lives," she said.

While some women do not want reconstructive surgery and are happy to "go flat", others view the process as an important step towards reclaiming their bodies.

RNZ has spoken to a number of women who have faced lengthy waits for surgery or who cannot get a specialist appointment.

Nelson mother-of-two Evie McLeod resorted to crowd-funding for reconstructive breast surgery in 2023 after her referral for an appointment at Hutt Hospital was declined.

She was heartbroken to have been rejected after fighting for her life over a traumatic six months of chemotherapy, a mastectomy and radiation therapy.

McLeod said repeated calls and messages left on a phone number listed at the bottom of the hospital's letter went unanswered.

She is well short of her $35,000 fundraising target.

"I just feel a bit lost and don't know what's going on. We're the ones who've been through so much with chemotherapy and radiation. It's disheartening because I went through all of that and I can't get a reconstruction that should be freely and readily available," she said.

Aucklander Suzie, who did not wish to use her surname, spent $90,000 in savings to have her reconstruction done privately, more than four years after a double mastectomy.

During treatment for triple-negative breast cancer in 2018, she was told she must wait two years before reconstructive surgery because of the disease's high rate of recurrence.

Two years later the mother-of-four was devastated to discover she was not on the Middlemore Hospital list - and staff could not explain why.

Suzie was promised surgical dates four times but the day never came, leaving her feeling increasingly disgusted by her body.

"You're looking at your body in the mirror with a flat chest and a bald head from the chemo and you just look like a man. No hair, no eyebrows, no eyelashes, I was unrecognisable. There was nothing feminine about me," she said.

Disappointed by constant rejection and desperate to regain some control over her body and her life, Suzie booked a breast reconstruction with a private surgeon in 2022.

"I worked hard all those years, paid my taxes, had all these promises and then felt that was the only option to get on with my life and be happy again. Spending that amount of money really made me angry," she said.

"If I had been told at the outset that it couldn't be done, I would have gone and paid for it sooner, then I would have only been miserable for the two years that I had to be miserable, instead of waiting four-and-a-half."

Six weeks after a party to celebrate five years in remission, the mother-of-four found a lump in her neck. The cancer had returned and was incurable.

In 2023, she spent a further $60,000 on Keytruda, missing out on benefiting from Pharmac plans to fund the immunotherapy drug for advanced triple-negative breast cancer from 1 October.

When Suzie's current chemotherapy treatment stops working or becomes intolerable, the next line of attack is an unfunded drug that costs $17,000 per dose, every three weeks.

"There's a lot of grief for what I'm going to miss out on, because this cancer will kill me, eventually. The clock is ticking," she said.

In 2021, the Ministry of Health released best practice guidelines that stated delayed breast reconstruction should be available to women in the public health service within a "reasonable timeframe".

New Zealand Association of Plastic Surgeons president Chris Adams said delayed reconstructive surgery should generally happen 12 to 24 months after a mastectomy, but women on public hospital lists could wait two to five years.

"The vast majority of women never make it to a waiting list. There just isn't adequate resourcing for reconstructive plastic surgery in New Zealand."

National access rates for women seeking reconstructive breast surgery sat between 18-24 per cent but that did not account for patients who could not get a specialist appointment, Adams said.

"One of [the] failings of our health system is an understanding of unmet need."

Adams said improvements to public waiting lists would depend on prioritising reconstructive surgery with ring-fenced funding or a significant increase in hospital resources.

Health NZ's hospital and specialist services delivery unit director Jo Gibbs said there was limited capacity for delayed breast reconstructions because of "high acute demand" across theatres.

"This means women who were not able to undergo immediate reconstruction are being advised that we are currently unable to offer an appointment time for delayed reconstruction," she said in a statement.

"However, they will remain on a wait list (pending their meeting eligibility criteria) and as spaces are available we will contact them to arrange their surgery. This may be at relatively short notice as spaces become available."

Health NZ was also working to increase capacity and reduce acute theatre demand in order to resume booking delayed reconstruction procedures well in advance without the risk they would be deferred, Gibbs said.

According to Health NZ data, 196 people are on the current wait list for breast reconstruction surgery, with an average waiting time of 188 days.

The average waiting time at Hutt Hospital was 195 days, while it was 108 days at Waikato Hospital.

Breast Cancer Foundation research and strategic programmes manager Adele Gautier said the process was "sub-optimal".

"We need to get back to reasonable access times and clear and transparent access for everybody who wants a reconstruction."

Breast reconstructions were part of a patient's cancer treatment, not a "nice to have", Gautier said.

"The desired outcome of cancer treatment is not just that you're still breathing, but that you are actually back into your life. For some people, a return to normal life includes a breast reconstruction."

The foundation urged patients to check medical insurance policies carefully, because many put a cap on the reimbursement amount and some did not cover any surgery on the opposite breast.

Ruby Wallace had the second of two operations in May and is enjoying spending time with her daughters, aged 16, 10 and three, at their home in Ngatea.

She said she was happier, regaining her confidence and could face herself in the mirror again.

"I'm stoked. I can now have a shower every day like I used to. I've still got quite a way to go with my healing but it's made a massive improvement to my mental health," she said.