Debra is still here after being diagnosed with incurable lung cancer in 2016. She is fit. She is well. In fact, she is living the high life, and she wants others to do the same.
“Logically, if you’re diagnosed at stage 4, you would think it’s too late, that your life is over and not that long ago, that probably would have been the case. But it’s not true anymore. Treatments have moved on significantly. I am proof of that.
I was diagnosed with stage 4 ALK-positive lung cancer on 6th October 2016. That means I’m three years and 10 months into my diagnosis – but let’s call it four years between friends – and that’s been possible because of the new treatments that are now available for people like me who are living with late stage lung cancer.
I am currently on a targeted treatment called Alectinib. On the whole, they are incredible easy to take. I take four tablets in the morning and four in the evening and I get on with my life.
This is my second treatment. When I was first diagnosed, I started on another targeted treatment called Crizotinib. The trial data was really positive and suggested I could be on this for many years. Unfortunately, I only got six months before I had some progression in my lung and shoulder blade.
I was devastated at the news, especially as I felt so well. The treatment had got rid of all my symptoms. Before I started on it, I couldn’t say a whole sentence without coughing and I couldn’t walk down to the village where I live without having to stop two or three times to catch my breath. It was pretty severe. But in less than two weeks of starting treatment, my cough had completely gone, and I could speak normally again. It was miraculous.
That’s why I was so upset to learn my cancer had still progressed, despite the positive impact it had had. Fortunately, there was another treatment I could go on and that I’m still on, three and a half years later.
Treatments keep on coming
Since my diagnosis, there have been three new treatments for ALK-positive lung cancer alone, and many others for other types of lung cancer. Even the chemotherapy treatments are a lot kinder than they once were, and there are many different types of them too, so there is hope.
We just have to keep hoping the scientists keep going and adding to the list of treatments so when one stops working, there’s another and another and another.
These treatments tend to work better when there is a low cancer load in your body. For ALK-positive patients, almost all of us are diagnosed at stage 4 because it is so silent for so long; we often don’t start to even show symptoms until the disease has already spread, and when they do, they are often mistaken as asthma, or heartburn, or even COPD.
But during that time, the cancer continues to grow. That’s what is meant by the term ‘cancer load’ – how many cancer cells have you got in your body. Even at stage 4, there can be a big difference between a high cancer load and a low cancer load, which is why that, even with late stage lung cancer, it is still so important to get that diagnosis as soon as your symptoms start.
With a little help from her friends
I know we are living in unprecedented times and a lot of people don’t want to bother their doctor at the moment or presume the cough they have is covid. But the faster you are diagnosed, the better. I can’t emphasise that enough.
I had a cough in the lead up to my diagnosis. I thought it could be adult asthma. I couldn’t think of anything else it could be as I was a non-smoker and, because my diagnosis, I truly believed you could only get lung cancer if you smoked, or if you had lived in a smoky environment.
The cough started in June and I put off going. I was working. I was busy. There was always an excuse. Then, in September, my colleagues were so fed up with listening to the cough that they made me an appointment with my GP. Without them, I’m not sure I would have prioritised going to the hospital for the follow up appointments and subsequent tests.
None of us thought it was cancer, or anything to really worry about. It was just really annoying! I’m so thankful to them now for making me go. I might not have had the same experience with my treatment if I hadn’t gone when I did.
Living the high life
Don’t get me wrong, it’s not been plain sailing. When I was first diagnosed, I did a lot of crying. I don’t know anyone that doesn’t. I cried an awful lot. I also felt a massive amount of guilt because it’s not only yourself that’s been diagnosed with cancer, it’s all your family and friends that have to deal with a cancer diagnosis too. I felt so guilty for my son, my parents, my brothers and sisters. It was a lot for us all to get our head around and the internet doesn’t help!
I was told not to google, but I didn’t notice. Hardly anyone does! But you must remember, what’s on Google isn’t accurate anymore. Things are changing all the time and Google hasn’t caught up! The reality is much more positive than is portrayed online. This might sound incredible, even crazy, to someone who doesn’t have cancer, or someone who has just been diagnosed, but I feel incredibly lucky to be living the life I am. I can’t stress that enough; I’m living the high life!
I recently started doing the Couch to 5k and I’m now up to 7k. I couldn’t run that before I was diagnosed with lung cancer! It doesn’t stop you. You can be well on it.
It sounds cliché but having lung cancer has changed my outlook on life. I appreciate the little things more and I’ve stopped sweating the small stuff. There’s so much that doesn’t bother me anymore.
I know it’s scary getting the diagnosis, but getting the diagnosis is better than sitting there worrying about it and not knowing. Not knowing won’t change it, it will still be there. Knowing about it and getting started on treatment earlier gives you a much better prognosis. You can live a good life even at Stage 4 lung cancer. You can have a very good life and many years of it.
The minute you start to take control, you will feel better as well. I know that doesn’t make sense but trust me when you’ve done it, when you’ve been and got the diagnosis and you know what you’re dealing with, you start dealing with the facts and get onto treatment and start living again. Living under that cloud is no fun at all. So, if you are experiencing symptoms, go and find out for certain. Even hearing that worst word in the world cancer, and it is the worst word you can hear, you can live a good life, if you can get on to treatment quickly.”