A lung cancer diagnosis for Tilly came as a shock. When she went to the doctor, she was expecting a simple explanation for her symptoms. She had no reason to expect that it was cancer.

Tilly* was young and healthy. She had never smoked a cigarette. Tilly was newly married, working as a nurse. She was in the prime of her life.

Here is her story.

Take us back to the moment when you were diagnosed. What led to this?

It was awful. It was 2012, I was 24 years old. It started with me coughing up blood. My sister took me to her GP as I didn’t have a regular GP at that time.

The doctor was lovely and said it was probably just from a blood nose that had run down the back of my throat. She sent me for a CT scan just to be careful.

I went for the chest CT scan on my own after work, which was a silly thing to do in hindsight. I wasn’t scared to have the CT scan done but during the scan the radiographer came running through worried asking if I was ok. Something had stopped the scan.

That really scared me, having her run through all worried like that. It made me wonder, am I fine? After checking on me and seeing I was ok, the radiographer thought maybe the line the dye was going through into my vein had kinked off and that caused the scan to stop.

She went away briefly then came back. She said that it looked like I had a mass on my lung. They would restart the scan again.

Terrified at that news, I lay there keeping as brave as I could while they started giving me the dye again and restarting the scan. At the end of the second scan the radiographer came back to disconnect me.

She said it looked like I had a Pulmonary Embolism (PE). She explained that that would mean they would send me to the hospital and I would start on rat bait (yes, her words exactly).

The radiographer asked me to wait in the waiting room while they confirmed the results. I waited there on my own, holding in the tears, trying not to freak out. It was the end of the day and I was their last patient.

The radiographer came back with her bag on her shoulder, ready to leave and said, it’s ok, it looks like a carcinoid cancer.

She reassured me that this was good news. It meant have surgery and have it cut out.

I felt shell-shocked, devastated and definitely did not agree with her that it was good news. After telling me the news, the radiographer got up and left to go home. Keeping a brave face, I finalised everything with the admin staff and then walked out alone.

As soon as I got out, the tears started to roll down my face as I could no longer hold it in. Thankfully, my husband was at work close by, so I called him. I told him the news, and he came and got me straight away and drove me home. 

I went back to the GP a few days later with my results. She was so shocked and empathetic with finding out the results. She referred me to a thoracics team at a large public hospital. 

The Thoracics team were wonderful. Very gentle and kind with me. I was a Nurse at the time at the same hospital and had spent a lot of time looking after TB patients. The Thoracic team wanted to take a biopsy of the mass to confirm what it was and rule out TB. 

I had two bronchoscopies which ruled out TB and confirmed it was a carcinoid carcinoma.

What did the doctor say?

The Thoracic team were pleased to be able to tell me it was a carcinoid cancer as this meant it only required cutting out, no further treatment would be needed and I would be able to carry on with my life.

The carcinoma was located at the entry of my right lung so they informed me it may require removing just one of the lobes in my right lung or the entire right lung.

They ensured me if they took the entire lung I would still be able to live a normal comfortable life. I did not feel so sure. Despite their positivity I still felt devastated about my situation.

How did you respond?

I trusted the medical team. I had no other choice but to. I remember I often would try to think of a way out of it, around having lung cancer, having surgery and then realising there is actually no way around this.

I literally had no other choice but to take each day as it came and travel this journey. I felt sad and worried. I had many moments of tears and wondered why me?

Will I be ok? I hope they don’t have to take the whole lung. How am I going to cope with only one lung?

hated it when people would tell me, “It’s going to be ok, you’ll get through this”.

It made me so mad because how did they know, and how was any of this ok? I wanted them to feel angry with me because I felt angry. 

Did they give a reason for the lung cancer?

No. They did not know. They felt it was one of the better ones to get if you’re going to get one! 

What were your treatment options?

Surgical removal. Thankfully I didn’t require anything further after that. 

Can you describe what it was like?

I remember feeling like ‘why me?’

I felt like I was young, fit, healthy, never smoked and it wasn’t fair that I got the lung cancer.

I remember when I would walk past smokers outside shops. I would feel so angry at them and would think how unfair it was that it was me going through this, it should be them when they are being so careless with their health. I hated that I had to smell their disgusting cigarette smoke as I walked past. I still do. 

Physically, I felt fine. Once I was diagnosed, I never coughed up blood again. I remember I could sometimes feel the air catching on something as I breathed in. Like you’d want to cough it up out of the way, but I couldn’t.

Other than that, I felt fine and continued life as normal until my scheduled surgery. I can’t quite remember how long I waited to have the surgery once diagnosed, it wasn’t long, I guess 2- 4 weeks or so. 

On my surgery day, I felt calm and at peace. I felt safe in the hands I was in. I trusted in my faith. My husband came with me and sat with me while I waited to be wheeled into theatre.

It felt like minutes from going to sleep and waking up again. The first question I remember asking my nurse when I woke up was, “Did they take the whole lung or just a lobe?”.

She said, “Just the lobe I think.”

I hoped she was right. I was on a lot of pain relief, which kept me comfortable but also quite drowsy. The surgical team reviewed me in ICU. They said the surgery went really well. They confirmed I only had one lobe removed. Now I just had to rest up and recover. 

The next few days after surgery were rough.I had a lot of post op vomiting and it took a while to get the right balance between pain relief and not being too drowsy.

I had daily Physio who helped me to mobilise out of bed. I was relatively anxious about the situation I was in and didn’t bounce back quite as quickly as I thought I would.

I had wonderful nurses that looked after me though who were so gentle, reassuring and kind to me and helped me through it. I also had a lot of family and friends visit me and sit with me a while which was lovely but also tiring. I remember one day I asked for some friends to kindly not visit me in hospital because I was so exhausted.

After a week in the hospital, I came home. I initially felt anxious to be home but after a day or so, I realised how much better I felt just being in my own environment. My recovery improved so much more just for being home. 

How much time did you have off work?

I spent a week in hospital and 6 weeks at home recovering afterwards.

How did affect your life and relationships?

I felt so loved and cared for by all my friends and family. It was surprising to me the amount of people that showed love and care to me and my family that were otherwise not that close to me. My family and I were surrounded by so much love and support and I felt so grateful for that. 

My husband and I were relatively newlyweds, only being married for about a year and a half at the time of my lung cancer diagnosis. Not how you want to start married life at all. The experience definitely brought us close. We both showed each other our raw emotions, fears and worries.

We didn’t hide anything from each other and walked the road together. My husband took me to all my appointments and sat by my side in the hospital. He was my absolute rock.

Was treatment successful?

Yes. I’m so fortunate that the cancer I had did just require cutting out. I had a very talented Thoracic Doctor who managed to remove the carcinoma by just removing the one lobe and was able to connect my bottom two lobes back to the trachea.

For the first 5 years post my surgery, I had regular chest x-rays to make sure I had no further tumours reappear. At 5 years post-surgery, I had one final chest CT scan, which confirmed my lungs were clear. I was discharged from the Thoracic team.

Are there any ongoing issues?

Sometimes I might feel a little short of breath or a bit of asthma type symptoms but otherwise, no ongoing issues. I feel normal and breathe normally like before.

I’m able to exercise and enjoy playing netball. I have a faint scar on my back from where I was cut open but otherwise you wouldn’t know I had a lung lobe removed. 

What is your life like now?

Wonderful. I’ve since had two beautiful healthy boys. I’ve played mixed and social women’s netball. I’ve continued my career as a nurse. My life returned to normal. And for that I am so so grateful. 

*names have been changed for privacy

Concerned about your health?

If you are ever worried about your body or something doesn’t feel right, it’s best to get checked out. It might be nothing but it might be a warning sign.

For peace of mind, it’s always better to err on the side of caution. Early diagnosis is key.

Health Direct – Here you can check your symptoms, look for information and call a nurse. They can advise you on what to do. You can always call directly on 1800 022 222.

In an emergency, call 000.

Do you have a story?

We are so grateful for Tilly taking the time to share her story with us.

Do you have a story to share? It might be something unusual, shocking, gut wrenching, unfair or simply something that has happened to you.

It can be a way to process what has happened and a chance to share your side of the story. It can also be a way to help others who may be going through the same thing.

Here are some true stories from our community:

My hot water bottle burst: a warning for others

He put a gun to my head: my escape from domestic violence

Greg Page had a sudden cardiac arrest during a Wiggles concert

Simply contact us here or on social media for the chance to be featured!

Melanie Wegener