For months, Jodie Guerrero had been experiencing deep throbbing pain down her right arm.
She also felt run-down and tired but attributed this to having a one-year-old baby who she was still breastfeeding and a four-year-old daughter with disabilities.
Then, she found a large lump near her right breast when she was feeling around for extra milk. It felt ‘hard but rubbery’.
Jodie panicked immediately.
‘I called a breast cancer hotline that day,’ she tells me.
‘They told me not to worry and advised me to arrange a doctor’s appointment as soon as possible. That doctor wasn’t helpful; he told me not to panic.’
Jodie then sought a female doctor who referred her to a specialist breast clinic.
‘I was told it was just a reactive lymph node, probably due to infections. I specifically asked about whether it could be something more sinister like cancer but was assured “nothing funny was going on”,’ she says.
Jodie Guerrero’s cancer symptoms were ignored at 21 medical appointments
‘A tiny voice in the back of my mind told me that something wasn’t right, but I trusted the experts.’
Jodie started checking every day to see whether the lump was still there. It was. She asked her husband to check it too. He was concerned.
‘I knew something was wrong. I visited seven different doctors over 11 months and had a total of 21 doctor visits,’ she says.
‘I was basically being told that I was a hypochondriac. Some doctors were very vague, others tried to get me out of the door with prescriptions or antibiotics, another suggested blood tests but said there was nothing unusual.
‘All this time, I kept getting infections and was having night sweats. I started taking a list of all my symptoms to different doctors. When I asked what I should do, one replied, “I don’t know”. No one would take me seriously.’
Jodie felt like she was ‘going mad’ and spent half her days searching online, trying to find a diagnosis.
Eleven months on from experiencing her first symptoms, Jodie was no closer to answers.
Jodie says a ‘tiny voice in the back of her head’ told her something was really wrong, despite doctors dismissing her symptoms
‘My family was starting to think there was nothing wrong with me. I was becoming increasingly desperate,’ she says.
‘I was very anxious and depressed and overwhelmingly sad.
‘For all those months, I couldn’t get any assistance. No one would listen to me. I sat in doctor’s offices in tears, telling them that I knew something was wrong, but I was dismissed time after time. I kept being fobbed off.’
Jodie continued working full-time in a high-pressure environment as a quality and improvement specialist in the aerospace industry; she had no choice given her mortgage repayments.
She also had to take care of the kids while both she and her husband juggled work.
‘I tried really hard to be present with my two children when I got back from work but fear was gnawing away in the back of my mind. I would try to juggle appointments in my lunch break and then be so tired by the time I eventually got home,’ she says.
Things got even worse.
‘One morning, at a ladies’ fellowship camp, I woke to find numbness and sciatica [nerve pain that travels down the back of the leg] in my right leg. The pain was so intense, I couldn’t walk on it,’ Jodie explains.
In total, Jodie has been through 94 rounds of chemo, which caused her hair to fall out
Finally, after four weeks of relentless pain and little sleep, she went to emergency, waited for four hours and refused to leave until a senior doctor agreed to do a CT scan.
‘Just in case,’ she insisted.
Those three words saved her life.
Soon after the scan, a doctor came out to tell her she needed to be admitted immediately. Jodie clung to her husband’s hand.
‘I will never forget that young doctor’s words, “I have been chosen to tell you what’s actually going on.” It very much felt like she had drawn the short straw and was the unfortunate one who had to tell me the truth,’ Jodie shares.
‘She [the doctor] continued, “We’ve found masses and tumours in your body. We think you have some form of cancer. It’s going to take a little while for us to investigate. You have a mass in your back causing your pain and sciatica. It’s eating into your sacrum bone and causing nerve pain.”‘
Jodie says she remembers crying and pleading with this doctor to save her life.
Jodie knows it’s a miracle she is still alive and says too many cancer patients die because of ‘delayed diagnosis’
‘I grabbed the doctor’s shirt and said, “I’m only 35 years old. I have two little girls at home. I must live for them. You need to do something to help me”. I was bawling my eyes out.’
Finally, after five nights of investigation, in September 2006 she was diagnosed with profuse Stage 4 Follicular B-Cell Non-Hodgkin’s Lymphoma (NHL).
This stage of cancer is also called metastatic or advanced cancer – a type which has spread from its original location to other parts of the body. It is usually not curable.
‘I was close to death. I was in so much pain because cancer had eaten away at my bones. NHL is a blood cancer that, in me, was caused by two random and common viruses – glandular fever and Epstein–Barr virus,’ she says.
‘As a result of the extensive disease, I was losing my mobility in my right leg.’
The pain in her right arm was identified as ‘bone pain’ from the lymphoma that had spread there.
Despite the advanced stage of her cancer, Jodie was able to undergo 10 weeks of life-saving treatment.
To her relief, radiation relieved the pain in her leg almost overnight. This was followed by intensive chemo and a special lymphoma antibody treatment.
Jodie says that, looking back, it was ‘amazing’ she endured work and childcare while her body was being ravaged by such aggressive cancer.
Thankfully, her gruelling treatment put her in remission by 2007.
But just as Jodie was starting to get back to her busy life, her symptoms returned while she was at work in early 2008.
The cancer was back, this time wrapped around one of her spinal nerves, which required many scans to diagnose.
Jodie needed chemo once again.
‘I kept going to work while doctors were giving me spinal chemo, but I eventually had to leave work as treatment was too demanding,’ she says.
The chemo stabilised her once again, but the damage done to her sciatic nerve by the tumour continued to cause pain and immobility, meaning she needed to use a leg brace and sometimes even a mobility scooter to get around.
But Jodie still wasn’t out of the woods. In December 2014, she was diagnosed with a new cancer called myelodysplasia (MDS), which once again was stabilised with chemo, then required a bone marrow transplant.
Jodie is now technically in remission, but admits she hasn’t truly felt well in 18 years – and she believes being ignored by doctors despite months of serious symptoms is to blame.
Jodie is now technically in remission but admits she hasn’t felt truly well for 18 years
‘I truly want to change [the] medical system so that more cancer patients are diagnosed sooner,’ she says.
‘Too many die because of “delayed diagnosis”. Amazingly, I missed that boat several times, but only just.’
Jodie knows she’s lucky to be alive.
‘All up, I have endured 94 doses of chemo and radiation. I’ve been in hospital for thousands of hours. I now take 52 pills every day, with weekly plasma infusions. My survival is a true miracle,’ she says.
In 2023, Jodie and her family moved from Brisbane to Toowoomba for a slower pace of life, to be closer to medical facilities and to enjoy beautiful greenery.
‘I’m marching on and doing more than just surviving,’ she says.
You can read more about Jodie’s story on her website: www.jodiesjourney.com
Are you having problems with the medical system? You can contact Jodie via the form on her website