'It is officially incurable, but I won’t give up hope': Mum on life with stage four lung cancer

“The two weeks waiting for results were the longest of my life,” she says.

She didn’t cry when she was told she had cancer: “I was too exhausted and shocked”.

Marina had to wait another fortnight to see how far the cancer had spread. She found the experience surreal as she had “always had a healthy lifestyle and never smoked, but now, was a lung cancer patient and the youngest by decades in the waiting room”.

Lung cancer continues to claim more lives annually, among both men and women, than any other cancer, with 1,850 people dying from the disease in Ireland each year, according to the Marie Keating Foundation.

Marina, who is originally from Germany and lives in Co Galway, was told that she had ALK+, a rare form of lung cancer which would require a specific treatment path.

“It’s not hereditary, the majority of ALK patients are non-smokers, about half are under 50, and the majority are women,” Marina says. “Most patients are already stage IV at diagnosis, particularly in younger patients, as their symptoms are often dismissed.”

She underwent concurrent chemo and radiotherapy and at the end of August 2018, had a middle lobe resection. “My family in Germany requested a second opinion from Heidelberg, and their protocol was pretty much identical, which was reassuring,” she says. “I also used complementary therapies, which made me more hopeful and helped me cope mentally and also with side effects.”

The now 40-year-old found treatment “very tough”, lost a lot of weight and was extremely weak. But once it was over, she “bounced back quickly”, thanks to the support of family and friends and the medication which helped her to cope with the pain.

Issues of fertility around treatment

Because she was a young woman, the question of fertility was raised and as “freezing eggs wasn’t an option because it would have delayed the start of chemo”, she was prescribed a course of treatment which would hopefully aid her chances of getting pregnant in the future.

“To be honest, having a baby was the furthest thing from my mind after hearing the words lung cancer, but my oncologist put me on Zoladex injections, which shut down the ovaries and induce temporary menopause,” she says.

“She explained I would possibly be able to get pregnant in the future. But other doctors said it wouldn’t be possible with my diagnosis — one even suggested that we get a dog.

“She was very nice and meant well, but when it comes to cancer or any life-threatening illness, doctors should be aware that ultimately no one knows what is going to happen with each individual case.

“And to our surprise, I became pregnant as soon as we had the green light to try again, which was two years after treatment — we now have a healthy two-year-old girl and I am very aware of how lucky we are.”

Following the birth of May she underwent several scans which “showed up clear”. But in July 2022, further scans revealed a recurrence in three places and she was diagnosed as stage IV.

“I always knew there was a very high risk of recurrence and while nothing will equal the complete disbelief and horror I felt at the initial diagnosis, the news still came as a shock,” she says.

“I am doing my best to accept that it is officially incurable, but I won’t give up hope for a breakthrough in research or some form of radical remission.

“I started oral targeted therapy in August 2022, taking eight capsules daily. It is an amazing development and has extended the life expectancy of lung cancer patients significantly.

“There are side effects, but they are manageable and a small price to pay. Eventually, the cancer will develop resistance to the drug, but there is another TKI (tyrosine kinase inhibitor) available for when that happens, which I pray will also work, and a new drug is currently in a clinical trial.

“I am doing well on my drug Alectinib and recently had another set of stable scans. The main side effect I struggle with is fatigue. But I have a great oncologist and team and assembled my own ‘team’ of healers and therapists, who have all gone above and beyond the call of duty for me.”

More funding for further research

Marina, who is on sick leave from her role as an art teacher, advises people to be aware of the symptoms of lung cancer and seek advice on any concerns.

“If something doesn’t feel right, get it checked out and insist on further tests if your doctor doesn’t instigate them,” Marina says. “Sadly, lung cancer is insidious, and there is currently no screening for it.

“I didn’t have any symptoms apart from the chest pain, which was [caused by] the tumour burrowing into the pleura. There are no pain receptors inside the lungs, which is one of the reasons for the absence of symptoms.

“I wish people realised that not all lung cancer patients are old smokers as the stigma is a huge problem and lung cancer patients get less empathy.

“I still tell every healthcare professional that I never smoked, as I want to address that assumption many people have, even some in the medical field. Up to 20% of lung cancer patients are non-smokers.

“Lung cancer is the leading cause of cancer-related deaths, yet it is the cancer that isn’t talked about.

“We need more funding for further research which will bring new, improved treatments, more life, and hopefully one day a cure.”

Since her diagnosis, she says, “life is more beautiful” and her priorities have been refocused.

“I appreciate the simplest pleasures more, do my best to live in the present, and take it one day at a time — when you are living from scan to scan it is hard to make any long-term plans,” she says.

“On the one hand, I don’t worry as much about small things, but on the other hand, sometimes small things can upset you more because you are already dealing with so much and just don’t have the bandwidth. I try to make day-to-day life as normal as possible for my family and create memories.

“Life is so fragile — my father died of pancreatic cancer when I was 18, and a few months after my initial treatment in 2018, my mother was diagnosed with breast cancer — thankfully, she is still in remission.

“Some days, the fear and despair can hit me, but there have been a lot of good times as well.

“It takes two to three years to process and adjust to a life-changing traumatic event, and while I am glad that I am here, every cancer patient knows that nothing is the same post-diagnosis and you cannot just return to who you were before.”