Katie Cohen

Did you smoke? It’s the first thing people ask me? Did your mum smoke? This really gets to me as nobody asks someone with breast cancer if they took the pill for years or took HRT.

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.

When mum was diagnosed, everyone was shocked. But when I was diagnosed, it was oddly less of a shock. Maybe it was because we’d already lived through it or perhaps it was down to who treated us; one of her doctors seemed more terrified than we did.

It took mum a year to get diagnosed; she first went to the doctors with breathlessness. The doctor put it down to anxiety (my dad had been diagnosed with Leukaemia). When she returned a year later, she had an x-ray which revealed a shadow in her right lung. Despite this, the doctor was adamant it wasn’t lung cancer – a phrase we both heard numerous times– but a PET scan, lung drain and biopsy said differently.

Katie and her mum

Chemo did the job initially; the cancer stabilised. But a year later a scan revealed it had progressed so 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.

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 offense 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 recently, when Caroline Aherne passed away, the perception of her was that of a smoker who battle 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. November is Lung Cancer Awareness Month. I hope this opportunity is used to raise awareness and educate people.

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 saved my life.

What is immunotherapy?

Immunotherapy is drug treatment that works with part of the immune system called T-cells. Normally T-cells identify and attack cancer cells, however some cancers send out chemical signals that shut down these T-cells, so cancer cells are “hidden” and grow unchecked. Immunotherapy treatment helps to stop these signals, and allows T-cells to re-identify and attack the cancer cells.

Some immunotherapy is available through clinical trials or under the Early Access to Medicines Scheme (EAMS). Speak to your clinical team to find out more or for further information, call our nurse-led helpline free on 0800 358 7200.

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