I Was Told I Was Pregnant - Twice - Before I Was Diagnosed with Ovarian Cancer
My diagnosis of ovarian cancer came after many months of persistent abdominal pain and bloating, and several misdiagnoses along the way. As a healthy (or so I thought) and active 21-year-old Health Science student, I wasn’t too concerned about my symptoms at first. I assumed that it was probably just period pain or perhaps a food intolerance of some sort. My attitude of nonchalance changed the day that I discovered a lump in my belly. Being at the pointy end of the semester at uni, I “didn’t have time” to see a doctor. But after weeks of obsessively monitoring the lump, scouring the internet, and trawling through textbooks in search of a reassuring explanation for the cause of my symptoms, I decided that I couldn't put it off any longer.
After lots of poking and prodding, the doctor told me that my symptoms were probably just caused by stress. I wasn’t convinced. I questioned her about other possible causes, and we agreed that it would be worthwhile for me to get a blood test to check whether I might have coeliac disease. I received the shock of my life when I returned a few days later for my test results and the doctor said…
"It's not coeliac disease; you’re pregnant!"
Cue alarm bells. I knew there was zero chance that I was pregnant, so was absolutely shocked and terribly confused that my body seemed to think otherwise. Despite my concern, the doctor wasn’t fazed, and just shrugged it off as a false result. I asked her if my blood tests showed anything else significant. The only other abnormality was that some of my liver enzymes were elevated, but she said that this wasn’t indicative of any particular problem. She told me that it was “nothing to worry about” and that further investigation would not be necessary. For months I’d tried to convince myself that I was ‘fine’, and that my symptoms surely weren’t being caused by anything too sinister. And this had just been confirmed by the doctor. I wanted to feel reassured and comforted by her verdict, but I didn’t.
I realised that the doctor was trying to finish up the appointment, but I still didn't have any answers about the cause of my ongoing – and worsening – pain and bloating. In fact, my abnormal blood test results had only raised even more questions. As the doctor motioned towards the door, I frantically tried to explain that I was worried that something was being overlooked.
Again she told me that I had no reason to be concerned.
Then she ushered me out of her office with the advice to try relaxation, and avoid any foods that seemed to make my symptoms worse. I felt like she wasn’t listening to me, but I didn’t know what else to say. I mean, who was I to question a qualified medical professional?
I walked out of the clinic feeling powerless, frustrated, and sick with worry. I slumped down into the driver’s seat of my car and dissolved into tears. By this point, I was almost certain that something was wrong somewhere inside my body. I had tried to get help, but the doctor wasn’t taking me seriously. I didn’t know what else to do. I was reluctant to mention my concerns to anyone else, for fear of being told that I was overreacting. To be honest, I was starting to wonder whether I was maybe going a little bit crazy, whether it was all in my head…
It wasn’t. I knew this for sure when I woke early one morning about a month later in unimaginable pain. I have a pretty high tolerance to pain, but compared to anything that I’d ever experienced before, this was a whole new level of excruciating: it had me gasping and crying and dry retching – and panicking, because this was most definitely not “nothing to worry about”.
I made an appointment to see a different doctor for a second opinion. Another lot of blood tests again (incorrectly) suggested that I was pregnant, and my liver enzymes were even more elevated this time. But this doctor couldn’t explain my symptoms either. Not wanting a repeat of the previous encounter, I knew that I needed to really back myself.
Maybe I don’t have a medical degree, but I know my body better than any doctor possibly could.
I left that appointment with referrals for two ultrasounds, another blood test, and a urine test. I had my abdominal ultrasound the following morning. It began to play out exactly as I’d feared when the sonographer’s cheeriness dissipated, and she called in her senior to view my scan. Fighting back tears, I asked “What is it?”. The sonographer sat down beside me, took my hand, and said: “I’m sorry, I can’t tell you. But you need to go back to your GP immediately, and please have someone else there with you”. I had to wait three hours for the next available appointment to see a doctor, and they were the longest three hours of my life. I knew that I was about to receive bad news. But how bad?
“It looks like a tumour. On your left ovary. It’s, um, quite large. About 18cm by 15cm”. The doctor sounded nervous as she delivered the news in a slightly shaky voice. There are some situations in life where you just can’t know how you’ll react until you experience them. This was one of those situations.
I didn’t cry. I didn’t yell. I just sat there, very still and quiet, trying to process it all.
I was relieved to know that I hadn’t been going crazy all this time, that I was right to have been worried about my symptoms. I was furious at the first doctor who’d carelessly dismissed my concerns and told me that I had “nothing to worry about”. I was terrified by the prospect of undergoing major surgery and spending a week in hospital. I was guilt-ridden by the realisation of what this would mean for my family and how it was going to impact them. I was desperate to get that tumour out of me as soon as possible, and I was prepared to go through whatever was necessary in order to make that happen. I felt so many things all at once, and yet I felt completely numb.
The doctor made some phone calls, and arranged for me to see a surgeon (who I later learned was a gynaecological oncologist) first thing the next morning. She told me there was a chance that the tumour could be cancerous, but we wouldn’t know for sure until a biopsy was performed. It’s not going to be cancer, I assured myself. I’m young, I’m fit, I eat well, I’ve never smoked, I don’t drink, I’ve never had any major health problems, and I don’t have a family history of cancer. As far as I could see, there was no reason for me to be worried about that. Cancer seemed like one of those things that happens to other people – I didn’t really believe that it could or would happen to me. The few days that followed were a blur of specialist appointments, CT scans, X-rays, ultrasounds, and more blood tests, and before I’d even had a chance to come to terms with what was happening, I found myself being wheeled into the operating theatre.
The surgery went well: I was pretty out-of-it for a few days thanks to the strong pain medication I was on, there were tubes coming out of me in all directions, and I learned that a few of my organs had had to be sacrificed in the process. But I was just relieved to know that the tumour was gone. Thank goodness for that. Ever optimistic, I convinced myself that everything was going to be absolutely fine – I was going to bounce back and get on with my life as though none of this had ever happened.
But as it turned out, the nightmare wasn’t over yet.
Four days after the operation, my surgeon came to see me in my hospital room with the pathology results. I don’t remember exactly what she said; the only word I that heard was "cancer". I sat in stunned silence as I helplessly watched my world spin out of control and crumble beneath me. I couldn’t bring myself to speak, but inside I was screaming: This can’t be happening. This can’t be real. I can’t have cancer. While the malignant tumour had been successfully removed, peritoneal fluid washings showed that cancer cells had already spread to my abdomen, which meant that I needed to have chemotherapy. It was two weeks before Christmas, but I wouldn’t be any attending any Christmas gatherings or holidaying at the beach or reaping the benefits of public holiday pay at work. In fact, I’d be cancelling all of my plans for the next few months.
My meticulously organised and completely normal life was suddenly plagued with uncertainty. I didn’t know what was going to happen to me as a result of the cancer, and there was nothing I could do about it – except to endure the gruelling treatment, and hope that it would work.
Due to my intensive chemo regimen, I underwent the majority of my treatment as an inpatient. And corresponding with the fact that ovarian cancer is most commonly diagnosed in women over the age of 55 (only 2% of cases occur in women under 30), I was treated in an adult hospital.
I felt so alone, isolated, and afraid as a 21-year-old cancer patient surrounded by others who were 40 or 50 or 60 years older than me.
I preferred to keep the door of my room closed because I hated the stares, the looks of pity, and the unhelpful (although I’m sure well-meaning) remarks that I was “too young to have cancer”.
As much as my friends and family told me that I was "brave" and "strong" and "inspirational", three months of chemo definitely took a toll on me. Pain, fatigue, nausea, vomiting, hair loss, dizziness, fainting, muscle weakness, tinnitus, mouth ulcers, menopausal symptoms, crippling anxiety... by the end of it all, I was a skeleton of my former self – both literally and figuratively. When I stood in front of the mirror, I barely recognised the timid, skinny, bald, bruised, scarred figure staring back at me.
Spoiler alert: life doesn’t go back to normal after cancer.
I’ve been in remission for just over two years now, and I don’t remember what it’s like to live a day without thinking about cancer. Step by step, I’m moving forward and learning to navigate my way through this phase they call survivorship. Naturally, some days are better than others. But for all the times that I find myself overwhelmed by cancer-related fear, guilt, and despair, there are moments that my heart is brimming with gratitude for the life that I have now. I’ve developed a whole new appreciation of the small and simple things that I previously took for granted. I’ve achieved more than I ever would’ve thought I could if I hadn’t had my cancer wake-up call. I’ve stumbled across a new sense of purpose in using my unique experience to support others affected by cancer, and am now heading down a new career path that I absolutely adore. And the best part of all is that I get to share this rollercoaster ride with some of the most legendary human beings in the whole entire world – the incredible friends I have made through our common stories of being diagnosed with cancer "too young".
It's fair to say that this is not the life that I planned, or imagined, or wanted for myself, but I am grateful for every single moment of it. And despite the ongoing challenges that come with a cancer diagnosis, I consider myself lucky.
Ovarian cancer has the lowest survival rate of all female cancers.
Because its symptoms are very similar to those of many other (less severe) illnesses, it is often misdiagnosed. Tragically, this can mean that by the time the cancer is eventually discovered, it is already at an advanced stage, and the potential for effective treatment is significantly reduced. As there is currently no reliable early detection test for ovarian cancer, awareness is the best weapon we have to help us stop "the silent killer" in its tracks. And this is why I share my story.
Cancer and the female reproductive system are both topics that tend to makes people squirm and look the other way. While I try not to weird people out too much with my nattering about gonads, I believe that it's super important to speak up about issues like this, to break taboos and start conversations that can ultimately save lives. I share my story in hope that it will reach someone who needs to hear it – a woman who hasn’t been feeling quite right lately, a man who notices his wife complaining of persistent abdominal pain, a doctor whose patient says that she is always bloated, a worried young person who feels that their concerns are not being taken seriously. My cancer could have – and should have – been found earlier. I’ll never know what difference that would’ve made for me, but my wish is that this message will make a difference for someone else; that their cancer will be diagnosed sooner, and treated sooner, and cured.