Seamus is loving husband to Brid and father to his three children Sam (19), Holly (18) and Matthew (12). In 2016 Seamus was diagnosed with stage 4 lung cancer and given around 18 months to live. The good news is that thanks to advances in treatment and a clinical trial, Seamus is now cancer free and doing well. This is his story, in his own words.
“In Early 2016, I had a recurring case of the swelling of the veins in my leg and my own GP was quiet concerned as this was an old man’s disease and at 46, I shouldn’t have it.
I was sent to the medical assessment unit at Ennis General Hospital and treated with antibiotics and it went away. However, it came back and returned about 3-4 times and each time I had to go to my GP and back to Ennis General.
On the last visit one doctor noticed that I had a swollen gland under my collar bone and said that it was concerning, and we needed to get it biopsied. I was referred on, but I couldn’t be seen for four weeks, in either of his clinics, public or private. We decided with my GP that I should go into A&E in the Galway Clinic because I was lucky enough to have private medical cover.
I arrived about 10am and I was seen straightaway. By midday I’d had a CT scan and was admitted. The CT scan showed multiple clots on both my lungs. I was treated immediately for the clotting and towards the end of the week I had the procedure to take the biopsy of the gland.
I had to self-inject with blood thinners for about nine months.
Before I left the hospital, I was told there was a concern that it was cancerous however I was told the chances were that it was lymphoma and that if it was going to be cancer that this was a good one to get. That was ok to hear, and we went away with that in our pockets, and we were due to return to a consultant oncologist about two weeks later.
When we went for that follow up appointment with the oncologist in the Galway clinic and my wife and I sat down, I actually can’t remember how he started. But I do remember him saying “oh you haven’t been told yet have you” and we looked at him and said haven’t been told what? He told me that my results have come back and that I had stage 4 lung cancer. That was a bolt out of the blue and we really didn’t expect anything like that. He gave us a few moments in his office to compose ourselves – so many questions race through your mind. He came back and we had more of a discussion. I decided to brave it and asked, ‘well what is the prognosis?’. His reply was usually its about 18 months however given my age and level of fitness I would probably survive a bit longer than that. He left us with the fact that he was going to check out treatment options and come back with a plan.
When we went back, he mentioned that he would propose me for a clinical trial that was coming up – the biopsy sample had to be sent to the states and number of criteria that had to be checked to see if I was eligible. After a number of checks, I was accepted on to the trial.
On the trial I was treated with two different types of immunotherapies. Started early summer 2016, I had a number of hospital visits while on treatment due to some complications including a flu that made me very ill. I got my wife to drive me to A&E in Galway and after a couple of days in the hospital and doing a lumber puncture they discovered that I had meningitis.
On another occasion, I was feeling poorly for a few days and had stayed in bed but was due for my regular scans in Galway and my wife and I decided we’d make the effort and get out of bed and get the scan done. I really felt unwell but as we were getting closer to Galway, I knew I wouldn’t be able to lie on the scan table and I asked her to bring me to A&E. I was triaged and bloods were taken and very soon some young doctor realised that I was in an adrenal crisis – one of the known side effects of immunotherapy is Addison’s Disease. (rare life threatening disease where your adrenal gland no longer produces cortisol, as a results you have to take daily meds and wear a medical alert bracelet and have easy access to a medical injection kit – your body doesn’t go into shock correctly and cortisol needs to be administered or it can be fatal). I was admitted and treated accordingly, and I was educated about it and now it is something I have to live with. Whatever I am doing I stop at midday and 4pm and take my meds. But thankfully, aside from my crisis at diagnosis I have never had another crisis.
Great care is taken of you when you are on a clinical trial, for the first year of the trial I had a CT scan every six weeks and since then, I have a scan every 12 weeks. There is a lot of comfort in that.
Back in July 2016 I had scans every six weeks, as the scans progressed over time, I knew the wording on the scan reports was always on the positive side and that was a great comfort. Until we got to April 2017 and the scan report from then on has said there was no longer any measurable disease detected! It is amazing, just fantastic, it is like all your birthdays coming together, a huge relief altogether. But I had committed to the trial for two years and I continued on the regime. I went for an infusion every two weeks. One immunotherapy every two weeks and the second one every third visit. After the two years I stopped the infusion and now I am monitored with scans every 12 weeks.
I was off work for about 13/14 months. I worked for about 30 years in Luftansa Technik and they were very good to me, kept in touch and when I was ready they brought me back on a phased basis and built up to full time.
One of the things I used to say to a woman I met while on treatment is that ‘we are the ones who are creating the new statistics for lung cancer.
I like to shock people a little bit and what I tell people is that my biggest health problem now is trying to run a 5K in under 30 minutes! I spent all last Sunday afternoon digging out the last of my spuds from the garden – I wouldn’t have been a Health fanatic before my illness but now I am much more aware of the need for regular exercise and plenty of good sleep and good nutrition. I am not fanatical about any of them, but I am aware and making better choices.
Together with others in the research and treatment side of things, the Irish Lung Cancer Community has been established, to build up the patient voice and establish a community of lung cancer patients/survivors and carers so we can support each other and raise awareness of lung cancer.
I am also on the Patient Consultant Committee of Cancer Trails Ireland where I am an active member of the Lung group, I am there to support the research work that is happening and give the consumer input to lung cancer trials and to lung cancer related research projects.
It is something I am hugely passionate about.
To learn more about this years lung cancer awareness campaign ‘The News’, click here.