These are some stories of people across the UK who are living with EGFR positive lung cancer.
Wendy’s Story
I'm Wendy and I live in Southampton with my husband and two daughters. I have been living with lung cancer for almost five years since my diagnosis in January 2017.
I experienced severe chest pains 36 hours before flying off to New York for a family holiday in December 2016 when I was 49. A chest X-Ray at A&E revealed an 'area of concern'. Within 10 hours of returning from New York (we had an amazing holiday!) I was being told that there was a possibility that I had lung cancer - this is where my cancer journey started.
The next few weeks felt like a roller coaster of tests. Surgery was the first course of action, but unfortunately it only resulted in an investigation where it was discovered that the cancer was stuck to my windpipe and had spread to the lining of my chest wall and lymph nodes. Then I was diagnosed with EGFR mutation positive lung cancer,
Why me? I don’t smoke, I don’t drink much, I eat a very healthy diet, I'm not overweight, I'm not very fit, but I'm certainly active. It’s not fair, what on earth could I have done to prevent this!
Treatment started with afatinib. I experienced substantial tumour reduction over the first 6 month. I had minor side effects but had a long- term infection in my nose that caused a permanent nasal perforation. At this point I switched to osimertinib as it became apparent that it was available to me privately. The cancer still continues to be stable and I have almost no side effects.
I am grateful that I am very well and have no pain. My cancer and medication don’t limit me other than reducing my energy. I continue to work part time as the technician in the Design Faculty of a local secondary school, where my colleagues are very supportive. I spend my time gardening, sewing, knitting, creating textile art. I love coastal walks, gigs, cinema, theatre and exhibitions. I’ve never had so many holidays! I make every effort to do the things I want to do, not just talk about them
I fully intend to be a ‘radical survivor’, I'm going to live into my 80's!
Angela’s story
I was diagnosed with lung cancer in January 2019. For a fit, healthy, never-smoker with absolutely no symptoms, this was a shock!
On the first day of our annual family skiing holiday, we were making our way back to the hotel when I had a fall. Reluctantly I went to A&E and following chest and shoulder x-rays was told there was significant bruising but thankfully no fractures. There was however ‘something suspicious’ on the chest x-ray. A CT scan the next day confirmed that I had a tumour in my right lung which was almost certainly malignant.
I choose to be treated in Austria and eight days later was in surgery for the removal of the lobe of the lung containing the tumour. The cancer had been caught early, it was probably Stage 1 and curative and given my asymptomatic state, my non-smoking history and being female, almost certainly EGFR.
Upon return to the UK, further tests and a PET scan revealed that I had a further malignant lesion on a vertebra. This meant that I was no longer Stage 1 but Stage 4. I was accepted for treatment at a new hospital and within one week of my first appointment I was prescribed a targeted therapy drug in the form of a daily tablet (afatinib) and had CyberKnife to deal with the lesion on my vertebra.
Fourteen months on, my scans show that my disease is stable and there is currently no sign of cancerous activity in my body. I continue with daily afatinib and apart from managing the annoying but minor side effects of the drug, I live a very full and active life.
Staying positive and being proactive in learning about EGFR cancer, the treatment options and developments has helped me to feel optimistic about the future. None of us knows how our disease will progress but I view my cancer as a chronic disease to be managed rather than a death sentence. With the birth of my first grandchild and the forthcoming marriage of my son I have lots to look forward to and I intend to be around for a long time!
Gail’s Story
I was diagnosed in 2016. I was getting undue breathlessness. At first, I brushed it off, but in May I realised these occasions weren’t just ‘bad fitness days’. After several weeks of investigation, they told me it was terminal, non-smoking lung cancer. A total bombshell!
I was started on Afatinib tablets 40mg. The side effects were bad, diarrhoea the worst. I was repeatedly told to take 2 Loperamide after a bout. It was months later in a TV programme about terminally ill cancer patients one spoke of taking it every day to prevent him ‘messing his pants’. So, I followed suit and was so much better.
After about a year I realised that I could and should go back to some of my previous activities. First I went back to a 50+ aerobics class. There is a danger that you can slumber, and not get back to your normal stuff, especially if you do not have a lot of energy or someone encouraging you. I found I could do most of the class but less vigorously than before. I also started doing a circuits class – shorter bursts of exertion suited my poorly lungs. I would feel tired but invigorated. And the social side of these classes did me a lot of good too.
In October 2019, Fred from Stronglines Physio presented a talk about the benefits of physio to the Macmillan cancer group I attended. He explained how physio could help in so many ways and for most cancer conditions. I didn’t need much convincing, and even though I’d be paying for it myself it wasn’t big money, and I was sure it would be worth it. And it definitely was!
In the first session my needs were assessed, I was given ‘easy’ exercises that mainly worked on strengthening the core muscles. I followed this daily routine. By January 2020, Stronglines had gradually stepped up the routine and I was feeling so much better, brain fog gone, fatigue gone.
By March 2021, I had improved to the extent that I took up a challenge for Marie Curie, ‘Stepping into Spring’. This meant doing 10K steps each day of March, fundraising along the way. I managed more than 10K nearly every day, raised £670 and felt another step change up. My energy/stamina improved, as the challenge pushed me each day. Eighteen months of physio had prepared me well, and the longer walks were a good challenge, stretching me even further.
Regular CT scans have shown that the treatment is holding back the cancer, with the two recent scans showing that the cancer has reduced. This was an amazing result and even my oncologist, always reserved, admitted so. Now it seems, even though I am now on a very low dose of Afatinib, I am again successfully fighting it!
I am now looking forward to summer, getting out and about even more. And there’s my niece’s wedding - when she set the date for July ‘21 back in ‘19, it seemed to me so far off, and my emotions were all over the place, would I make it? Now, it is so near, and I’m so well I know I can be there and enjoy it! I never thought I could get this much better, but I have!
Lizzi’s Story
My name is Lizzi and I live in Romsey, Hampshire. I am married with three grownup daughters and two grandchildren. In April 2019, I was told I had incurable and inoperable Stage IV lung cancer. The main tumour was on my windpipe, and it had spread extensively. The NHS offered me chemotherapy and an MRI scan. Age fifty-eight, my world was turned upside down.
It began when I experienced lower back pain that nothing would alleviate. What followed was multiple GP visits, X-rays, CT scans, hospital admission and a bronchoscopy leading to several possible diagnoses All the while I got worse, lost weight, was often fatigued, had bad headaches, neck and back pain.
Eventually, after a private MRI scan, my oncologist confirmed multiple brain lesions and the EGFR+ mutation, and started me on the TKI osimertinib, (which has the ability, unlike chemotherapy, to penetrate the blood brain barrier). He also told me I would lose my driving licence because of the brain lesions (this was almost harder to cope with than Stage IV cancer diagnosis. Eleven weeks on CT and MRI scans showed miraculous results. The lung tumour had shrunk to a quarter of its original size, the fluid had almost gone from my lung, and just a couple of brain lesions remained.
Eighteen months on and I’m doing great. Medication is working well with few side effects.I am living my life with hope. I’m able to do everything I did before, I have my licence back and I’m looking forward to a future I thought I’d lost in those early days.Life is definitely for living!
Natasha’s Story
As a fit, healthy, non-smoker, I was utterly shocked when I was diagnosed with Stage 4 NSCLC EGFR+ exon 19 deletion in January 2023. I was initially misdiagnosed in October 2022 as having tuberculosis after attending a chest x-ray to investigate a persistent cough and hoarse voice. I thought my world had ended but then I started to take Osimertinib as a palliative drug. Osimertinib has given me my life back; it has given me so much hope. My primary tumour has shrunk and my brain metastasis can no longer be seen on a CT scan.
I am a mum of two teenage daughters who keep me on my toes; a wife to the ever supportive Matthew; and a dog mum to Max and Olive, my two bonkers hounds! I have been a primary school teacher for 26 years and absolutely adore my job - I miss not seeing the children every day but working for EGFR Positive UK has given me a new focus. I am determined to raise awareness of EGFR Positive lung cancer and to challenge stigmas attached to lung cancer.
I recently shared my experiences of talking to loved ones about cancer and being open and honest throughout the journey.
If you would like to learn more about Natasha’s experiences, she recently recorded a podcast with the Roy Castle Lung cancer Foundation which is available to listen to now.