Patient Stories

Samantha’s Story

After recovering from covid in 2022 I began experiencing breathlessness and repeated sinus infections over several months. It was all put down to long covid and I was put on a few courses of antibiotics and given inhalers, but nothing worked.

I then began feeling pain in my left side lower rib area. It felt as though I had pulled a muscle in my side. I decided to go to my doctor and request to go to ENT and get an X-ray. This showed a lesion in my right lung. After having a CT scan which confirmed there was a tumour, I was referred to the lung cancer rapid access service by my GP. Cork University Hospital got back to me.

I was totally shocked; I was only 47 at the time and felt I wouldn’t be affected by lung cancer as I was a non-smoker. They took a biopsy and removed the tumour, they also checked my lymph nodes to see if the cancer had spread. I ended up having half my right lung and an airway removed as there was signs of some cancer there. I was in hospital for two weeks after surgery, spending a number of days in ICU.  I was diagnosed with non-small cell lung cancer (adenocarcinoma, stage II, grade III). The tumour was successfully removed, with no lymph nodes affected and the cancer hadn’t spread so no further treatment was needed.

 

I was asked if the lab could do further tests to see if I was sensitive towards treatments, which I agreed to. I was told that I had met the criteria for a current cancer trial under Dr. Collins in CUH. It involves taking a targeted therapy in tablet form each day for three years with the hope that it will help protect me in the future. I am the first patient post operation on this trial in Cork so I feel very lucky to be able to do this and not to have to wait and worry about cancer coming back again. 

So far, it’s been up and down with side effects of the treatment. I have been dealing with some abscesses and ulcers in my mouth and nose, spots on the face, upset stomach and my taste buds aren’t great but I am managing it. My energy levels are also not the same, and breathing can be difficult sometimes as a result of the surgery.

At the moment it’s the mental side I am struggling with most. I am experiencing bad anxiety which affects my sleep. I have been told to really cut down on my activity and I am also off work. I am a busy mum and always like to be busy and out and about so I find no longer being able to do that very difficult. My recovery will take months not weeks.

I’ve been attending the Cúisle Centre in Portlaoise, for counselling, mindfulness and reiki which I’ve found really helpful. At first I thought I wouldn’t need these supports but I have actually found them invaluable. Especially meeting other people who are going through similar and understand.

One piece of advice I would like to share with others is to always follow your instincts. My gut was telling me that something wasn’t right in my body. Sometimes you have to push for further testing, you know your own body best. I have always felt healthy and to get lung cancer being a non-smoker was a very big shock to me. My hope for the future is to live long enough to enjoy my life to the fullest and all the special times ahead with my family.

Marina’s Story

My only symptom was acute chest pain one night in March 2018. A few weeks later I was diagnosed with inoperable lung cancer (adenocarcinoma, stage IIIa). Biomarker testing revealed a rearrangement of the ALK gene. ALK positive lung cancer accounts for around 5% of lung cancer cases and disproportionately affects young fit never-smokers like myself: I was 34.

Young patients often face misdiagnoses and delays, as their symptoms are dismissed. The pain I had was caused by the tumour burrowing into the pleura (there are no pain receptors inside the lungs, hence the late onset of symptoms). I am grateful my GP referred me for an X-ray once muscular pain was ruled out. I was one of five patients she saw that day who presented with chest pain – it is such a common and vague complaint and often harmless. If something doesn’t feel right, get it checked out and insist on further tests if your doctor doesn’t instigate them.

Because I was stage IIIa, I didn’t qualify for the relatively new targeted therapies (TKIs – tyrosine kinase inhibitors) that are available for certain mutations, including ALK, and there was a very slim chance that it could still be cured, so I had chemotherapy (Cisplatin and Pemetrexed), radiotherapy and a middle lobe resection – my doctors decided to try surgery, as I was young and healthy. My family in Germany had requested a second opinion from Heidelberg, and their protocol would have been pretty much identical. I also used complementary therapies.

For nearly four years I had NED scans, and to our surprise I also became pregnant. I had had a missed miscarriage shortly before I was diagnosed, but our plans to start a family were the furthest thing from my mind after hearing the words “lung cancer”. However, I was put on Zoladex injections during treatment to protect my ovaries, and we now have a healthy two-year-old girl. I am aware how lucky we are; most young female patients are stage IV at diagnosis, and a pregnancy is generally discouraged, as TKIs might be harmful to the foetus.

Unfortunately, in July 2022, the CT scans showed a recurrence in four places, and I started oral targeted therapy that August. While I always knew there was a very high risk of recurrence and nothing will equal the complete disbelief and horror I felt at the initial diagnosis, the news still came as a shock.

I have a great oncologist and team and am doing well on my medication Alectinib, apart from fatigue and some other side effects (and being hospitalised with pneumonia twice last winter). Targeted therapy is an amazing development; it has extended the life expectancy of lung cancer patients significantly. Eventually the cancer will develop resistance to the drug, but there is another TKI available for when that happens, which I pray will also work, and a new drug currently in a clinical trial. And I won’t give up hope for a breakthrough in research or some form of radical remission.

Being a young lung cancer patient is extremely isolating, compounded by the fact that this disease is often a taboo. For many of us this is an invisible disease, and of course I am glad that targeted therapy enables me to live what appears to be a normal life, but the flip side is that people can forget that your world has changed completely and you now live from scan to scan, and that due to fatigue and the psychological impact you simply cannot do as much as you used to and have to prioritise different things.

There is so little public awareness around lung cancer, even though it is the leading cause of cancer-related deaths. The stigma is hugely problematic, and by highlighting that I never smoked I am not assigning blame to those who did or do, but raising awareness of the fact that anyone with lungs can get lung cancer, including young never-smokers, might help shift the narrative. We need more publicity, more funding for further research and improved treatments and ultimately more life.

Brigid’s Story

I am a woman in my 70s.  A never smoker.  I retired from my job as an administrator at age 65 following 40 years work.  I am a mum to two adult children and a granny to four super smallies. I was always active, over the years doing pilates courses and on retirement I joined a ‘stronger for longer’ class in my locality.

 During lockdown in 2020, I developed a light ticklish cough, particularly at night. When it didn’t clear up I spoke with my GP who prescribed a treatment and sent me for an x-ray. The x-ray showed a large growth low down in my left lung. I was referred to the Rapid Access Clinic in Beaumont Hospital.  After a series of scans and tests, I was told it was a lung adenocarcinoma and had spread to a lymph node in my lung.

 I was offered the chance to take part in a clinical trial or have surgery.  It was a very difficult choice but I opted for surgery.

Following which I had four rounds of chemotherapy and started a course of immunotherapy which I tolerated very well. Eight months later a small tumour was discovered on my brain after I started having trouble holding things in my left hand. I underwent surgery to remove it and began taking targeted therapy which is used to treat non-small cell lung cancer with EGFR exon 20 mutation.

 The medication, in tablet form, took some time to adjust to but I am presently keeping as active as possible, doing various exercises and joining zoom talks.  What I have learned is that life is precious and to enjoy every day as we do not know what is around the corner.

Aoife’s Story

Aoife Lyttle Murray, a mother of four, was 34 when she started suffering from a persistent cough and a pain in her chest and back which felt like a pulled muscle. After finding two swollen lymph nodes on her neck her doctor prescribed antibiotics for what was assumed to be a chest infection. When there was no improvement in her symptoms she was sent for an X-ray, followed by a CT scan. These showed a 5cm tumour on one of her lungs and 9cm tumour on her lymph nodes.

She received the shocking diagnosis of Stage 3b lung cancer in September 2021. Aoife underwent six rounds of chemotherapy, 30 sessions of radiation and eventually started an immunotherapy treatment called Imfinzi. She has been in remission since August 2022.

“I couldn’t believe it. I had smoked for twentyish years and I haven’t smoked since that X-ray. It was the hardest year of my life but I’m so grateful to still be here and will hopefully be here for many years to come. The picture is of me on holiday last year doing something I’ve always wanted to do.”

Deirdre’s Story

On March 17 2021, Deirdre was climbing a mountain with her family. Two days later on her 51st birthday she was told that she had lung cancer. Deirdre, a non-smoker and very active nurse and mother of three, couldn’t believe what she was hearing.

“The reality is that lung cancer can affect anyone at any time. The fact that this type of cancer gets little publicity meant that it was never on my radar. I delayed going to the doctor about my tiredness and breathlessness as I just thought it was part of getting older and working full time in the health service during a pandemic.”

Deirdre now advises everyone to be aware of the signs of lung cancer.

“If you aren’t feeling right just get it checked out and if you have any sort of persistent respiratory symptom don’t be afraid to ask the doctor to investigate for cancer.

More needs to be done to raise awareness. Funding needs to be focused on screening for early diagnosis and commencing the right treatment as early as possible.

Through the Irish Lung Cancer Community I have found people with the same diagnosis, who share the same ideas. There is a sense of support in numbers, you don’t feel alone.”

Being part of the ILCC has empowered Deirdre as she feels she can now discuss her experience and hopes that by sharing her story it will help others affected by lung cancer.

Tracy’s Story

On 30th April 2019, at age 35 and after experiencing back pain for a number of months, I was given the diagnosis of lung cancer that had spread to my spine. I needed emergency spinal fusion surgery to stabilise my spine and was started on targeted therapy a few days later to treat and manage my specific type of lung cancer with EGFR mutation. I was a healthy, fit 35 year old non-smoker so it was a huge shock that all this was happening.

I was so aware of every other type of cancer. I had breast lumps checked, skin moles checked, regular smear tests but lung cancer was never on my radar. I always thought this only affected people who had smoked for 50 or 60 years. How wrong was I? It is still unknown why lung cancer is affecting people in the younger age brackets. The fact is that lung cancer can affect anyone regardless of your age, fitness, diet, smoking habits etc. Anyone with lungs can get lung cancer.

I quickly realised how isolating a lung cancer diagnosis can be as there was no support groups, public lung cancer campaigns or fundraisers that I was aware of. It seemed like it was the cancer that no-one wanted to talk about. This really upset me and made dealing with a lung cancer diagnosis even more difficult. I believe that every lung cancer patient deserves the same chances, resources and visibility as other cancers. This is what led me to meet with a fantastic group of people who felt the same way and the Irish Lung Cancer Community (ILCC) was formed.

I hope that in the future, lung cancer patients in Ireland will never have to deal with the stigma that is currently attached to it and they will have access to earlier diagnosis, lung cancer screening, support groups, cancer research, resources and treatments. I really believe that continued lung cancer awareness can help to make this happen in the future.

Pam’s Story

Last year I developed a recurring cough that came and went for months, but I fobbed it off as seasonal allergies or long covid symptoms. As a healthy non-smoker in my 30s, I never would have dreamed of lung cancer.

The cough became really persistent around August. Then followed repeated visits to the doctors, being dismissed and sent away with cough bottles or codeine. I was in pain, losing weight and exhausted. I knew my body and I kept going back. Eventually I was sent for a chest x-ray which showed up anomalies, but before further investigation could occur I had to go to A&E after coughing up blood. 

After 3 weeks of all sorts of tests, the worst possible news was delivered – stage 4 lung cancer. I’ll never fully be able to describe how that lands and the difficulty in moving forward after it, but somehow you do! In some ways I’m lucky, as it’s type EGFR I get to use targeted therapy which I’ve responded well to and I’ve largely been unaffected by side effects. 

Thanks to the support of my incredible fiance, friends and family, I’ve found my way through this past year and have surprisingly had a lot of fun and adventure while doing so. I’ve done a lot of firsts this year, from skiing to buying a campervan, and there was a lot of laughter. There are some very dark days too, and they like to sneak up on you when you least expect them, but overall I feel positive, hopeful and strong.

Receiving the diagnosis of stage 4 lung cancer – everything stops. All those exciting life plans you imagined for yourself just evaporate. It feels like everything is just snatched from you. Life is lived in 3 monthly blocks. However, I also see the beauty in things more clearly, the value in the great people in my life and the importance of a really good conversation. 

I want to see awareness of lung cancer as a disease that can affect anyone of any age spread. More screening, more awareness, less stigma.

Gillian’s Story

My Name is Gillian and I was diagnosed with non-small cell lung cancer on my 40th birthday. I was fit, I was healthy and I spent my evenings in the gym or out running after work. In July 2021 I started to feel unwell, which escalated quickly to being unable to walk upstairs without having to take a break because I was breathless. This was put down to a reaction to the covid vaccine which I’d just received. One hospital admission and a few weeks of tests led to the diagnosis in November. I was dumbfounded, scared, angry, shocked and fearful. All I kept thinking was that I didn’t want to die. I was too young for cancer.

I was given the shock diagnosis alone as it was during covid, and had to relay the events to family which was heart breaking. A plan was put in place quickly and I had a lobectomy in December. I spent Christmas day in CUH which was horrendous being away from the kids and himself

The surgery was a success thankfully and I now have follow up CT scans every 6 months. I didn’t need any further medical treatment but I did need emotional help to come to terms with what had happened. I sought the help of a therapist and learned CBT.

There is a horrible stigma attached to lung cancer and it’s a very isolating disease. You are almost ashamed to say what type of cancer it is. I wish lung cancer was given as much attention, funding and research as other common cancers. Most people don’t know that it kills far more women than breast cancer, yet receives a fraction of the funding.

I wish there wasn’t this awful stigma attached to lung cancer. “How many packs did you smoke?” is often the first question people ask you. Lung cancer isn’t just a smoker’s disease that only old people are diagnosed with. Lung cancer affects both men and women and the rates of lung cancer are actually rising in young women. My hope for the future is that I get to live to be a very old lady and see a cure for all cancers within my lifetime.

Maurice’s Story

On December the 28th 2022 my world changed forever and things were never the same again. Nobody prepares you for what it feels like to receive the news of a cancer diagnosis.

Here is how my story began. My name is Maurice and I’m 10 months into my journey as I write this. Everything is still unstable mentally and emotionally as my wife, son and I navigate this process.

I was diagnosed with stage 4 non-small cell lung cancer at the age of 38. Previously I had a cough on and off during the year, at some points nearly leading to vomiting but then disappearing again after a couple of days, so I never thought much of it. I had some phlegm with and without blood, some weight loss, hair loss and I looked fatigued which I just put down to working hard. My breathlessness and coughing in cold and damp weather was put down to a chest infection, but when it didn’t clear up I was sent for a chest X-ray.

I was called an hour later and told there was a large dark shadow on my right lung. My world changed completely and things were never the same again.

Within a week of getting the results of a bronchoscopy I started chemotherapy which continued for 3 months, followed by immunotherapy and a few sessions of radiotherapy. I also had biomarker testing to determine if a particular gene mutation could be identified, which would make me eligible for a targeted treatment or trial. Unfortunately this test came back with no known drugs currently available.

It was a extremely terrifying as I was a healthy, fit 38 year old male who never smoked and kept an active lifestyle through work and activities such as hiking, scuba diving and freediving. Leading up to my diagnosis I was still working full time in construction, long hours and tough weather conditions. I am currently receiving immunotherapy every three weeks indefinitely as well as scans every three months. This is a challenging way to live knowing things could change at anytime.

The ILCC has benefited me deeply and given me a space to share my concerns and fears, as a male this can be challenging to open and trust.

The community allows you to feel supported and encourages you.