When speaking to people living with lung cancer, the issue of stigma comes up time and time again. It is something that angers those affects, and hurts them deeply too, and Katie Cohen believes enough is enough:
“Did you smoke? It’s the first thing people ask me? This really gets to me as nobody asks someone with breast cancer if they took the pill for years, or HRT. It shouldn’t matter.
People still believe that lung cancer is only caused by smoking. Of course, smoking can cause cancer, but it isn’t the only factor. You don’t need to have smoked or been around smoke to get the disease.
I was diagnosed with stage IV NSCLC adenocarcinoma in January 2015. I started with a persistent cough in last August 2014. My symptoms then progressed to back and shoulder pain, coughing up fluid, feeling sick, weight loss and tiredness. I was put on antibiotics, inhalers, steroid pumps but nothing was working. I had a series of scans but nothing significant showed up.
Six days before Christmas, I had an x-ray that showed fluid on my lungs. The next day I had them drained. The fluid was inconclusive, so we still had no idea what was wrong with me – I was tested from everything from HIV to Lupus. We got a second opinion and I had a PET scan but again it was inconclusive. I then had my right lung drained and biopsied. It was then that the diagnosis was eventually delivered.
It’s strange but it wasn’t a shock. Maybe it was because we’d already lived through it – my mum also had lung cancer. Chemo did the job for her initially; the cancer stabilised. But a year later, her cancer had progressed and she started chemo again. Throughout this time, she remained very active and extremely positive. She showed me that you could live with the disease and that life carries on. You never heard her moaning (unlike me!).
Sadly, the cancer spread and treatment stopped working. My mum died 26th April 2016, whilst I was still living with this awful disease.
The attitudes I’ve faced…
People are horrified when I say I have lung cancer. Even other cancer patients don’t know how to react. As I said, people’s first reaction is to ask me if I smoked. I know they don’t mean to cause offence, but it sends a message that this is my fault. Having lung cancer is hard enough without having the added feeling that you brought it on yourself. Even if it was caused by smoking, no-one deserves this.
There needs to be more education. The trouble is lung cancer isn’t ‘sexy’. In a way it’s become fashionable to support breast cancer. So many celebrities have talked about their experiences – Kylie Minogue, Jennifer Saunders, Maggie Smith. This doesn’t happen with lung cancer.
Even when Caroline Aherne passed away, the perception of her was that of a smoker who battled alcoholism. Not much was said about the genetics or the links to the retinoblastoma she had as a child. It would be great if someone with a positive image came forward and spoke about lung cancer. When I first diagnosed what I needed was someone to identify with but there was no one.
This feeling of isolation is something I’ve experienced throughout. The support services I’ve accessed have been unable to provide me with the help I so desperately needed because of my age and the type of cancer I have. I was left so uncertain about my future – How long I would live for? Would I have children?
People don’t truly understand what it is like for lung cancer patients. It is hard to articulate why we feel so different, but it is largely due to the stigma around smoking and the lack of funding and media coverage, which implies people don’t care.
As you can probably gather, I could talk about this all day and, thanks to my current treatment, I’m able to. I was hospitalised in January, developed ascites and my whole body filled up with fluid. I couldn’t take any more chemo so the immunotherapy, Nivolumab, was my only option.
The treatment has given me my life back. I have barely no side effects. I’ve been able to go on holiday, I’m active and I can see a positive future. I’m even thinking about starting work again in some capacity. It really has given me my life back.”
Sadly, immunotherapy only worked for a short time for Katie and she passed away in April 2017. Before she died, she took this fire and passion all the way to the Palace of Westminster, sharing her story with MPs and senior figures from the world of medicine and health policy, campaigning for better attitudes and outcomes for future generations.
“I do not know what it like having another type of cancer. And I am not saying that one is worse than other. But what I want to get across to you is what it is like for someone with lung cancer.”Katie on the stigma of lung cancer she faced.
We are made to feel like we are fault. We feel that nobody cares. To me, this is reflected in the amount of money that has been put into research for lung cancer.
This lack of funding explains why 70% of late-stage patients are dead within a year. It explains why it took five months for me to get a diagnosis. Why after less than two years I am running out of treatment options. And why my medical team do not expect me to make my 40th birthday.
I know lung cancer is not fashionable and there is a stigma attached. However, it IS the biggest cancer killer and it needs addressing.”
Katie Cohen, Palace of Westminster 2016
Read Katie’s full speech here