When someone tells you they have lung cancer you would hope the response would be something along the lines of, “I’m so sorry. That must be difficult for you. How are you?”
But for many people (me included) who have a smoking history, all too often the response is, “Oh, were you a smoker?” That is normally followed by a knowing nod which means, “Well what did you expect?”
Thing is, if you have lungs, you can get lung cancer. It is a disease that can affect anyone.
And yes, if you have a smoking history, you may have a higher risk of developing lung cancer and other lung diseases, or other cancers for that matter. Yet it is lung cancer that gets the bad rap. Regardless, people living with lung cancer deserve the same care and consideration as anyone else living with cancer.
Stigma is killing people
People who have a smoking history past or present, who don’t talk to their GP when symptoms first appear as they think it is all part of having smoked find this often leads to a late-stage diagnosis when the cancer has metastasised to other parts of their body.
The off-hand comments and judgements made at medical reception desks as you check in for an appointment are enough to impose incredible guilt on you.
You are left thinking you deserve the symptoms or the diagnosis because you have a smoking history.
These are all micro-moments that can be the difference between someone seeking a diagnosis and much needed treatment and not seeking any treatment, paying the ultimate price as a result.
The stories we tell and believe about people who have or still do smoke need to change.
It was a cultural norm
We must consider, for the generation of people considered eligible to participate in the National Lung Cancer Screening Program. For those aged between 50 and 70 years old, when they first started smoking, I’d wager it was still considered ‘cool’. It was a way to connect with peers and by the time we realised the damage it could have on our health we were addicted. Cigarettes and nicotine is designed to addict people to long term use.
I have stage 4 non-small cell lung cancer. I was first diagnosed when I was 57 years old in October 2020. I didn’t have any symptoms and was going to the gym regularly doing HIIT classes with 23-year-olds. Originally diagnosed as Stage 3A, I underwent a bronchoscopy, three rounds of chemotherapy to shrink the tumour found in my right lung, and then I had an upper right lobectomy to remove that part of my lung that had the cancerous tumour and lymph node. More cancerous lymph nodes were discovered, and I also underwent 30 rounds of radiation.
My cancer was found incidentally. I was at my doctors for an unrelated matter, and I was fortunate they ordered a CT scan for me which covered my whole torso – this showed a white shadow on my lung.
For two and a half years I had regular PET / CT scans which continued to show no evidence of disease. I honestly thought I had dodged a bullet. In July 2024 a small amount of fluid was found to be abnormal during my regular PET /CT scan, which was drained from my lung, and it was discovered my cancer was back – this time it was Stage 4 lung cancer.
Initially hearing I had lung cancer sent my world into a spiral. I had a smoking history so not only did I think I was going to die; I carried a lot of guilt and shame. I felt that I had brought this illness upon myself. I was so ashamed I didn’t share my story with anyone (outside of my family) for a few years.
There is no room for shame
While I have a voice, I will not let the guilt and shame keep people who are living with lung cancer or are yet to be diagnosed from the treatment they deserve.
It is why, with the community and friendships I have formed through Lung Foundation Australia, that I have advocated for the National Lung Cancer Screening Program that launches on July 1. I have been a part of drawing a line in the sand on the stigma associated with lung cancer.
We have developed conversation starters and materials that empower people to be screened and potentially have an earlier diagnosis.
Thankfully, over 95 per cent of people who are screened as part of the program, won’t be diagnosed with cancer. But for those who are, how lucky are you to be able to be a part of a generation who will have greater treatment options that allow you to live well.
To be a part of the generation that will live with lung cancer that is treatable, not terminal.
I’m the ultimate pin-up girl for the program. I was 57 when I was diagnosed (you need to be between 50 to 70 years old to be screened). I had no symptoms of lung cancer – no cough, no pain, no shortness of breath. I had a smoking history.
If this screening program had been around five years ago, I would have jumped at the chance to be screened. And if I had been able to be screened then, I most likely would not be writing this today as someone living with a Stage 4 diagnosis. I might have been diagnosed at Stage 1 when treatment is more effective.
That is why I believe the launch of the National Lung Cancer Screening Program marks a major milestone for Australia. With more people being screened and earlier, we can start to catch this disease before it is too late and give people back their lives. For some who will be diagnosed in this program, it will hopefully become a manageable illness.
In 2024, just over 15,000 new cases of lung cancer were diagnosed. Likewise, close to 9,000 Australian’s die from lung cancer a year. That is more than the deaths related to breast, prostate and bowel cancer combined. Lung cancer is the deadliest cancer in Australia and yet we fight daily for the support the disease so desperately needs.
The five-year survivorship for lung cancer is 26 per cent. That is too low. The launch of the National Screening Program is just the start of improving Australians’ health.
There will be no doubt be challenges, but as we know life rarely goes the way we want. Yet, I have hope this is the start of a new age for how lung cancer is viewed in Australia. Imagine how many lives can be saved, not to mention incidental findings that will come out of the program.
In the UK we have seen that almost 60 per cent of lung cancers are now being diagnosed as stage 1.
What I wouldn’t have given to have that outcome. I believe we can do the same here, we must.
I personally cannot think of a better legacy to leave behind than to know that I was part of a community who changed the outcome of lung cancer for ALL Australians.
So, to the politicians who can use their voice to make change, I urge you to invest in this underrepresented cancer because your investment will save lives. It can become your legacy as well.
To family members who have a loved one who is or was a past smoker, please encourage them to speak to their GP. Being referred to the program for a bulk-billed CT scan might save their life.
And to anyone reading this with a smoking history (like me) and believes they do not deserve to be screened, I ask you to challenge your belief. You do deserve to be screened, diagnosed and receive treatment like anyone else. The gold standard of care is for all Australians.
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