'A lot of stigma': The 'taboo' cancer side effects we don't talk about

Nicola Du Thaler has survived vulvar cancer. Twice.

She now describes herself as the "poster girl" for the rare gynaecological cancer that affects about 420 Australian women a year.

But the treatments that saved Ms Du Thaler's life also left her with complex, lifelong issues.

Ms Du Thaler struggles with mobility and finds it uncomfortable to sit or stand for long periods.

She uses a stoma bag — also known as an ostomy pouch — to help her go to the toilet and has what she refers to as a non-functional "Barbie butt" following some surgical "exhaust modifications".

"I refuse to let [cancer] control my life, and that's why I started on speaking out about it,"

she said.

"There's still a lot of stigma attached."

Taboo topic under-reported

Olivia Bellas, a PhD candidate at Adelaide University, said the number of women living with gynaecological side effects of cancer treatments such as vaginal pain, recurrent infections and difficulty urinating was probably "far more" than data suggested.

She is the lead author of an article in The Lancet Obstetrics, Gynaecology, & Women's Health calling for the health system to address "critical and under-recognised" treatment-induced gynaecological side effects.

"It's under-reported because of stigma and taboo," she said.

"Patients are potentially feeling not able, or not comfortable enough to broach that with their with their clinicians, with their treating team."

Ms Bellas said many oncologists and clinicians would not ask their patients about gynaecological side effects as they felt it was "out of their scope of care".

But, she said, these complications could affect a persons wellbeing, function and comfort.

Ms Bellas urged health workers to talk about gynaecological side effects in screenings and appointments.

She said there needed to be better screening tools, clearer referral pathways and specialised training to help clinicians feel confident talking about the potential sexual, urinary and reproductive side-effects associated with cancer treatment.

This was especially important, Ms Bellas said, as many Australian women diagnosed with cancer today were living longer than ever before, making it essential to focus just on surviving cancer, but living well post-diagnosis.

"The life expectancy for a lot of common cancers like breast cancer, the five-year survival [rate] is really, really high, but unfortunately there's these enduring side effects,"

she said.

"Not just the gynaecological ones, there's cognitive impairment issues there's just general fatigue, these quality of life factors that need to be considered as well."

Important gaps in care

Australian cancer experts have welcomed the call to action and its key recommendations.

Eva Baxter, senior research fellow at the University of Queensland who did not contribute to the article, said she was "delighted" to see it shine a light on gynaecological side effects.

"It's not new news, but it is something that's not talked about," she said.

Dr Baxter said she suspected many women were "suffering in silence", unsure of what to do ease these symptoms and uncertain about bringing them up in follow-up appointments unless the conversation was initiated by a clinician.

Gynaecological oncologist Paul Cohen, a director of Australia New Zealand Gynaecological Oncology Group, who did not contribute to the study, said the article highlighted "important gaps in care".

Professor Cohen said he would welcome specialist training for clinicians to appropriately broach and manage conversations about gynaecological side effects, topics which he agrees still carried a "great deal of stigma".

"There's a lot of work to do in terms of training clinicians, so that people feel more comfortable, normalising a lot of the issues that our patients are confronted with after treatment and there's a big need for specialised clinics or specialised models of care," he said.

Survivor input needed in care re-design

Professor Cohen said the article highlighted the need for cancer survivors to have a chair at the table when re-designing care models to include conversations about gynaecological side effects of treatment.

There was also a need to include the perspectives of cancer survivors from culturally and linguistically diverse communities often faced more significant barriers to treatment, he said.

Due to cultural sensitivities and shame, these groups typically found it hard to discuss gynaecological side effects in front of family, especially if they needed an interpreter.

He said providing culturally safe care to all patients was essential, especially as data showed minority groups had poorer cancer outcomes than the Australian population more broadly.

"Our patients with disabilities, our patients from LGBTQI communities, our Indigenous, Aboriginal women … all of these groups have worse outcomes," he said.

Breast cancer survivor Naveena Nekkalapudi, who was listed as co-author on the article, said including people with lived experience in care model discussions was essential.

She said there was a misconception that when the treatment — such as chemotherapy or radiotherapy — wrapped up, life for the survivor went back to normal.

"But there is not a single person who walks away from cancer, a cancer treatment unscathed," she said.

"Like sunshine and happiness off if you go, live your life, ride off into the sunset.

"I say, 'You know, the treatment saved my life but ruined my quality of life.'"

Ms Nekkalapudi said the standard of cancer care provided for people today was more patient-centred than in previous decades, women still deserved more.

Specifically, she wanted clinicians to find the space for "hard" conversations about a patient's gynaecological health post-cancer, as they could have a big impact on a person's quality of life.

It's a sentiment echoed by former schoolteacher Ms Du Thaler.

While she was no longer able to work in a classroom, Ms Du Thaler has used her lived experience to speak out about surviving vulva cancer and the need for better, kinder treatment options.

"I realised this was going to be my new career speaking about it, and telling my story to anyone who will listen in the hope that it changes outcomes, it changes the treatment, and it changes the way people talk to you about it," she said.

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