Doctors brushed off my low iron for years. Then my husband noticed a strange smell – it was a silent cancer

For most of her life, mum Rebecca Castano-Mander thought going to the toilet only once every week or two was just how her body worked.

As a child, she was constantly constipated. As a teenager, she was permanently exhausted. By her twenties, the now 41-year-old was suffering faecal impactions so severe that she regularly ended up needing hospital intervention to clear her bowels.

Still, she says doctors repeatedly told her it was ‘probably just IBS’, hormones, stress, depression or low iron.

‘I’ve heard the words “probably just” from so many medical professionals in my life,’ Rebecca tells the Daily Mail. 

‘And it’s frustrating because “probably” means you’re not doing proper assessments or tests to know for sure, and “just” devalues everything we’re going through.’

By the time she was finally diagnosed with bowel cancer at age 35, part of Rebecca felt relieved.

Not because she had cancer, but because after decades of feeling dismissed, there was finally proof that something had been wrong all along.

‘I was never the problem. I was actually right,’ she says.

Rebecca says she struggled with constipation for as long as she could remember and simply assumed it was normal.

As a teenager, she was constantly fatigued.

‘I would come home from school and sleep for hours, then on weekends I would sleep until 11 or 12 o’clock,’ she says.

Her mother took her to a doctor when her moods began changing during her pre-teen years. Rebecca still remembers sitting in the appointment while the doctor explained away her symptoms.

She recalls: ‘He said, “You’re probably just going through preteen hormone changes. We’ll put you on antidepressants.”‘

Even at that young age, Rebecca says something about the conversation did not sit right with her.

‘I remember saying, “Okay, but is there a diagnosis? Can we know for sure instead of just saying it’s ‘probably just’?”‘

That phrase would follow her for decades.

About 15 years ago, Rebecca remembers visiting her sister-in-law’s house and having to borrow maternity shorts because her stomach was so painfully swollen after going nearly two weeks without a bowel movement.

‘She looked at me and said, “That’s not normal”,’ Rebecca recalls.

‘And I remember saying, “Doctors seem to think it’s perfectly fine.”‘

Eventually, the term ‘IBS’ began appearing in appointments.

She was told to change her diet, take medication and manage the symptoms, but nothing worked.

Instead, Rebecca began suffering repeated faecal impactions every few months, a serious medical condition where stool becomes hardened and stuck in the colon.

‘It basically turns to concrete,’ she says.

The interventions became brutal and relentless. There were hospital visits, medical-grade suppositories, emergency bowel-cleansing drinks and colonic procedures that left her physically and emotionally drained.

‘I had to drink five litres of this awful liquid over three hours just to clear my body out,’ she says. ‘And that was happening every three to four months.’

At one point, scans revealed she also had a twisted bowel and she was placed on bed rest. Still, nobody seemed alarmed by the bigger picture and Rebecca says there was never a single doctor who stopped to ask why such severe symptoms kept returning.

Physically, she says the symptoms consumed her life. She became so bloated and uncomfortable that she did not want to be touched, sit down or even walk properly.

‘And because everything is building up inside you, it presses on your organs,’ she says. ‘It gets hard to breathe. My kidneys even started struggling.’

Emotionally, the toll became crushing.

Rebecca eventually stopped talking about her symptoms because discussing bowel movements made people visibly uncomfortable and she became tired of feeling dismissed.

‘It was soul-crushing to go, “I am living in physical pain and my mental health is declining rapidly and no one can help me,”‘ she says.

Throughout it all, doctors repeatedly focused on Rebecca’s low iron levels and exhaustion. The solution was almost always the same: iron tablets, iron infusions and more rest.

‘No one was actually identifying the cause,’ she says. ‘They were just masking it.’

The irony, she says now, is impossible to ignore because the iron supplements only worsened the constipation that was already making her life miserable.

‘If my husband had gone in and said he had low iron, they would have immediately investigated,’ she says.

‘But women get told, “You’re doing too much. You need rest. It’s hormones.”‘

Over time, Rebecca says she began doubting herself and questioning whether maybe everybody else was right.

‘When everyone around you is telling you similar things, you start thinking maybe you are the problem,’ she says. ‘I genuinely thought maybe I was overreacting.’

Around the same time, one of Rebecca’s close friends was diagnosed with stage four bowel cancer after initially believing she had a stomach ulcer.

Rebecca says her friend also had to fight to be taken seriously and became a fierce advocate for her before she died.

‘She kept saying, “You have to advocate for yourself because no one will believe us and no one will listen to us,”‘ Rebecca says.

Those conversations would ultimately help save Rebecca’s life.

Not long afterwards, she completed an at-home bowel screening test which came back negative. For a moment, she convinced herself that everybody else had been right all along and that maybe the symptoms really were ‘just IBS’.

Then one evening, her husband noticed something strange after she used the bathroom.

‘He said, “That’s not the smell of faeces. That smells metallic. Like iron,”‘ she recalls.

At first, she brushed him off, but he continued pushing her to take it seriously.

‘He said, “No, you need to see a doctor about that because that is not normal.”‘

That appointment changed everything. The doctor she saw that day had never treated her before, but unlike many others, Rebecca says he actually listened. She arrived armed with research, family history and years of symptoms.

‘I basically gave him dot points,’ she says.

‘I said, “This is what’s been happening. I’ve spoken to family in the UK and there’s bowel cancer throughout the paternal side. I’ve done the bowel test. This is what’s happening to my body.”‘

The doctor immediately referred her for a colonoscopy and Rebecca says she almost broke down in relief.

‘The one thing I’d been fighting for for so long, I finally got,’ she says.

Rebecca says she went into the colonoscopy feeling nervous but hopeful. After years of frustration, she believed she was finally going to get proper answers.

But even while lying in the hospital bed waiting for the procedure, she says she was still being dismissed.

‘I told the anaesthetist I hadn’t done a proper bowel movement in a week and a half. And he said, “I’m not really sure why you’re here because it’s very common for people to go two weeks without a bowel movement. But here you are anyway.”‘

Rebecca says she cried afterwards because she had finally reached the point where she thought somebody was going to help her.

‘I remember thinking, “I’ve finally got someone to listen. I’m finally going to get help. And then even in that moment, I was still being dismissed,”‘ she says.

At 35, Rebecca underwent the colonoscopy that finally revealed the truth. Doctors found a 25mm cancerous tumour in her transverse colon.

For a brief moment, she felt validated.

‘I remember thinking, “I’m not crazy.” Then my whole life just went, “I’m going to die.”‘

Complications followed quickly. Because the tumour had attached itself to blood vessels in her colon, part of the bowel tore during the removal procedure, causing a haemorrhage.

Rebecca remembers standing in the shower later that night as large clots of blood fell from her body.

‘It looked like a crime scene,’ she says.

Terrified, she went to hospital, only to feel dismissed yet again.

‘They basically said, “You haven’t haemorrhaged. You’d need to lose two litres of blood for that.”‘

Years of battling to be believed had left her exhausted and emotionally worn down.

‘I was so angry and jaded by the whole experience,’ she admits.

A year later, another tumour was discovered during a follow-up colonoscopy, along with 12 polyps. Today, Rebecca remains on long-term monitoring and still battles anxiety whenever symptoms return.

‘This week I’ve actually been really constipated again,’ she says. ‘And immediately my brain goes, “What if another tumour is growing?”‘

These days, she credits an online nutritionist with helping her regain some control over her health after years of feeling ignored.

Rebecca, who runs organic skincare company Naturally Kos, says improving her gut health has dramatically changed her quality of life and reduced the debilitating fatigue she had lived with for decades.

For the first time in her life, she says she finally understands what a ‘normal’ bowel movement feels like.

But emotionally, the scars remain and Rebecca says the experience fundamentally changed the way she views the medical system and advocates for herself.

‘I wish doctors had just listened to the whole story instead of just saying, “You’ll be fine.” Because I was never fine,’ she says.

Now, she hopes that speaking publicly will encourage other women to trust themselves sooner than she did and keep pushing for answers if something feels wrong.

‘Listen to your intuition. It’s never wrong.’

If you’re experiencing ongoing bowel symptoms or are concerned about changes to your health, contact Bowel Cancer Australia or speak to your doctor.

More information, support and resources are available via Bowel Cancer Australia.