Bendigo woman left wanting answers following breast cancer misdiagnosis

These are the words of Janine Ryan, a Bendigo woman who has lived through the unimaginable over the past two years.

What started as an annual health check-up with a friend took a turn for the worst when she was told she had triple-negative breast cancer.

But in reality, this was far from the case.

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In early 2021, Janine received a call following a regular mammogram, telling her an irregularity had been detected on the scan.

"I remember saying to [her friend] Barb when we came out 'oh that was funny', because they had to do the same side again, but I didn't think anything of it," she said.

"I got the call from BreastScreen Victoria saying I needed to have a follow up because it showed something.

"They said I could possibly need a mammogram, I could need an ultrasound and depending on that, I would have a biopsy all in the same day."

After waiting patiently for a week, Janine was given the tough news - she had a "rare and aggressive cancer".

"They said it was fast-growing, but small," she said.

"They had to err on the side of whether or not to go with treatment. And we didn't know any better."

In a short span of time, Janine consulted with a local surgeon and oncologist to determine what to do next.

It was decided she would undergo six months of chemotherapy, an experience she would never forget.

"I had three months of one type of chemo and about five or six weeks of another," she said.

"The first lot didn't go well, I was really unwell with it. I worked three days in eight months because I was so unwell."

As well as those symptoms, Janine began to develop other potentially sinister issues that would lead to the early cessation of her chemotherapy.

"I was told if I began to feel tingling in my fingers and toes, let us know because we need to stop, it will be peripheral neuropathy," she said.

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"I had other reactions the first time I had chemo and doses were changed, but it didn't last long the second time around."

Along with the loss of feeling in her extremities, Janine suffered from nausea, mouth ulcers, gastritis, lack of sleep, to name a few.

Janine's medical team then reconvened to plot their next move, because as it turned out, after all that, there had been no change to the lesion.

Plans to reduce the lump before ultimately removing the remaining cancerous tissue in surgery had been foiled, so the question remained of where to go next.

Janine's friends voiced their concerns, asking the oncologist whether another scan would be conducted before the second round of chemotherapy.

In that case, another scan was conducted and it was determined the lesion had not altered.

This raised some questions; was there scar tissue that hadn't had a chance to shrink as the scan was early?

Janine was then given a choice, to have a mastectomy or a lumpectomy coupled with radiation therapy.

"I didn't want to have radiation, but no one was forcing me one way or the other," she said.

"I'd been sick enough at that point, so the thought of going through more therapy was too much.

"So on August 18 I had a mastectomy."

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And this surgery didn't go without its challenges either, with Janine having to return to theatre the following day to have a 700mL haematoma removed from the site.

A day or two later, a blood transfusion was performed.

"It wasn't easy," Janine said.

Two weeks later, she found herself in her surgeon's rooms for a follow up appointment, one with a twist no one could have ever predicted.

"They said 'we have good news and surprising news'," Janine said.

"The good news is, I didn't have to have any more surgeries or therapy because I'm cancer-free, the surprising news is I never had cancer to start with."

The post-surgery histology testing had found no trace of cancer in the breast tissue.

Needless to say, shock was the prominent emotion felt by everyone - however Janine felt more.

"My issue was, I never felt like I had cancer," she said.

"I was only sick because of the chemotherapy.

"So it almost wasn't a surprise to me for them to tell me I didn't have it."

What upset Janine the most was the feeling of letting people down who had been there for her throughout the journey.

Following her diagnosis, friends and family would cook, clean, whatever she needed, but she worried about what people would say now.

"All these people have done so much and I feel like a fraud," she said.

Following letters from the surgeon and oncologist stating there was no evidence of cancer, Janine and her friends wanted some sort of accountability.

So they approached a solicitor.

"He told us we needed to find somebody who will say 'I can see how we got it wrong' or 'I can't see how we got it so wrong'," Janine said.

"The second opinion they got after the mastectomy was they could see how a mistake could have been made, so there went my case.

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"We also learnt you have to have lost more than five per cent of your body and a breast isn't enough."

Janine said with the peripheral neuropathy and psychological effects, it would be more than six per cent and would bring forward a case, but there would be more to it than that.

She said the solicitor had told her if the matter were to go to court, at least five specialists would have had to agree that mistake could have been made by the pathologist.

It was decided the financial burden that would bring was too much.

Despite her journey, Janine says it's important people don't skip their breast cancer checks.

"I really also want to raise awareness and my hope that it doesn't happen to anyone else," she said.

"I certainly don't want anyone put off having a mammogram... ever."

BreastScreen Victoria reiterated this message, saying women aged 50-74 should be checked every two years.

"Breast screens can find cancers that are too small to see or feel," the organisation said in a statement on its website.

"The earlier breast cancer is found, the better the chance of a positive outcome."

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Janine has spent months in therapy, coming to terms with what's happened.

But there is always constant reminders she can never get away from - both mentally and physically.

"I still have tingling in my fingers and toes, and it gets worse the further away from the experience I get," she said.

"I can't walk far these days, so there have been lasting effects."

And when it comes down to it, Janine isn't looking to take down anyone.

"I don't want to blame anyone, I just want an apology," she said.

BreastScreen Victoria was contacted and is not able to comment on specific cases.

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