health

'I thought I was stressed about my son's life-saving surgery. Then I received the diagnosis.'

When Tracey Ryan's son, Leigh, was born 13 weeks premature, it was the beginning of a lifetime of hospital visits. 

Little Leigh was diagnosed with neuronal intestinal dysplasia and Hirschsprung's disease, and was unable to use his bowels. Long stays in hospital for lifesaving surgery became part of everyday life for the little boy and his family.

"Leigh spent a lot of his early life in hospital, so I would stay Monday to Friday with him and my husband, Andrew, would do the weekends," Tracey told Mamamia.

"Unfortunately our daughter Erin missed out on a lot, but she understood."

Watch: A 35-year-old woman shares what it's like to have cancer while pregnant. Article continues below.


Video via The Cleveland Clinic.

When Leigh was around 12, he and Tracey were in hospital as he endured yet another life-saving operation, when she felt a sharp pain in her breast. 

With her husband working away in the Northern Territory and the worry around her son, Tracey assumed the pain was related to stress. But given she was in the hospital anyway, she talked to one of the nurses.

"With Leigh being in hospital so much, the nurses became our family so I asked one of them to have a feel of my breast," Tracey said. 

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"The nurse said she felt a lump and that I needed to go and see my GP urgently."

Tracey was concerned, but at the time, her mind was on Leigh.  She booked an appointment and was asked to have a mammogram and an ultrasound. 

When Tracey saw the tears in the technician's eyes, she knew something was wrong.

"The GP phoned and I went back to see him, and got told there was a mass and that he had made an appointment for me to see a breast surgeon. He then sent me for a biopsy, then back to his office, where he did another ultrasound, and received the biopsy results. All this happened within two days.

"He came around from his desk, held my hand and said, 'I am so sorry to tell you, hun, but you have breast cancer.' This was on the second day and I was by myself. Everything he said after that was a blur."

Tracey sobbed as she drove back to the Royal Children's Hospital, but was able to pull herself together for her son and family. 

Her official diagnosis was early-stage breast cancer, also known as eBC. Sometimes, people refer to eBC as the "good cancer" due to its relatively high five-year survival rates. But for Tracey, the "good cancer" meant having chemotherapy, a lumpectomy and ultimately, a double mastectomy. 

The experience was incredibly draining on Tracey's mental health, as she dealt with the physical toll of treatment while also showing up for her family. 

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Then, after four years of treatment, Tracey received some devastating news — news that proved there's no such thing as "good cancer". 

"I was having a lot of back pain but put it down to a possible side effect of chemo," she says.

"But then I had a scan and it lit up like a Christmas tree. My oncologist phoned me and said the cancer had metastasised, and was now in my spine.

"I threw the phone to my husband and told him that I could not listen to this call and he had to take it.

"This was the end. I was going to die and not be able to see my children grow up, see them get married, have children. I felt cheated."

For the past 11 years, Tracey has been living with stage-4 cancer, the result of her early-stage breast cancer diagnosis. She has undergone multiple surgeries and rounds of chemotherapy and radiation therapy to treat the cancer as it has spread through her body. Then six months ago, she made a decision.

"I made the decision to stop treatment six months ago because the side effects became too much. I currently have cancer in my spine, liver and right lung. My doctors think it may also have spread to my thyroid," she says.

Tracey is now teaming up with one of Australia's leading breast cancer advocacy groups, Inherited Cancers Australia (formally Pink Hope),  to call on Australians to stop using the term "good cancer" as new research finds the phrase can stop those diagnosed with early-stage breast cancer (eBC) from sharing their concerns, challenges and fears.

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Tracey says she also dislikes phrases such as "cancer journey" and "winning/losing a battle with cancer". 

"[A] 'journey' is when you go somewhere nice and this is not nice. Saying winning and losing battles sounds like one did more than the other, which is not true. You don't lose the battle; cancer has killed you. I say they have gained their wings. There is no good cancer — every cancer is bad."

Tracey says there is no such thing as "good cancer". Image: Supplied.

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What is eBC?

Early-stage Breast Cancer (eBC) refers to invasive cancer that is contained in the breast and may or may not have spread to lymph nodes in the breast or armpit.

"Most breast cancer cases are diagnosed at early stages, with around 70-80 per cent being hormone receptor (HR)-positive and HER2-negative, the most common subtype," Lisa Caterina from Inherited Cancers Australia said.

"eBC is sometimes referred to as 'good cancer' due to its high five-year survival rates [81-100 per cent].​"

Medical practitioners may use the term to offer reassurance, as the prognosis for eBC is generally better compared to more advanced stages, but this approach has its downsides.

"While the five-year survival rate for eBC is relatively high, with many patients responding well to treatment, the risk of recurrence remains. About one-third of stage 2 and over half of stage 3 patients will experience a recurrence, and 30 per cent of eBC patients will develop metastatic disease​."

Lisa says hearing the term "good cancer" can lead patients to feel invalidated or guilty for expressing their concerns.

"It can make them feel like they don't have the right to share their fears or challenges, as they are perceived to be 'lucky' compared to those with more advanced cancer​.

"This may prevent patients from seeking the emotional support they need during their cancer experience, leading to isolation and untreated mental health issues, like anxiety or fear of recurrence. It can also downplay the serious treatments and side effects eBC patients endure​."

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Lisa says no cancer should be labelled as "good" because every diagnosis presents its own concerns and challenges.

"Regardless of the type, stage or prognosis, cancer is life-altering and calling it a 'good cancer' minimises the experiences of those living with it. At Inherited Cancers Australia, we believe that every person with breast cancer, whether at an early or advanced stage, deserves to have their individual needs recognised and supported.

"By changing how we talk about eBC, we can ensure that all patients feel heard, supported and valued. Family members, healthcare providers and communities must understand that no cancer is good or easy, and every individual's experience deserves recognition and equal support."

Given the advancement of the disease, Tracey will die from cancer. But she's determined to live the rest of her life to the fullest, including busting the myth that early-stage breast cancer is a "good cancer" to be diagnosed with.

"My husband and I made the decision to either sit in the corner and go 'woe is me' or say 'f**k it' and go live my life. I've travelled, I cherish every moment with my family and friends, I'm more outspoken. I now stand up for myself. I've done stuff I have never would have done because of the cancer."

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Feature image: supplied.