“Trust your body, see a doctor, and remember; where there is treatment, there is hope.”

Sage advice from 41-year-old Gini Harrison who was diagnosed with non-small cell lung cancer with an EGFR Exon 20 mutation in December 2021.

After experiencing persistent shoulder pain, Gini was sent for MRI scans which revealed her worst fear, but the mum of two was surprised how her outlook changed following her diagnosis.

She explains: “My frame of mind has changed since being diagnosed. From day one it was almost like an instant mental change. It became very clear, very quickly, what was important to me and what wasn’t… and some of those things were surprising. But that meant I was able to very quickly let go of things that I didn’t need to keep hold of, and which may have caused me stress or worry in the past.”

“I’ve suffered from significant anxiety for the last 10 years, and amazingly this diagnosis has (ironically) taken away some of the worries I used to have. Don’t get me wrong, I still get anxious, but when you hear your worst fear has actually happened, you have no choice but to face it head on.”

Lung cancer treatment

After the discovery of the rare EGFR Exon 20 mutation, Gini’s lung cancer team at Guy’s and St Thomas’ hospital decided on a complex treatment plan, Gini describes: “Unfortunately, my type of lung cancer doesn’t really respond well to immunotherapy or the new targeted TKI drugs that often work so well… so it was straight into the deep end for me!

“I initially had 4 rounds of platinum-based chemo (cisplatin for 2 rounds, and then carboplatin for 2), coupled with pemetrexed alongside 32 rounds of radiotherapy to my primary lung tumour and right hilar lymph node. This was then followed by 3 sessions of SABR to my shoulder metastasis, which I have just finished.

“Before I started treatment, I downloaded the charity’s lung cancer information booklets on radiotherapy and chemotherapy which I found full of useful information. I have just started a 3-weekly cycle of ‘maintenance’ chemotherapy (of pemetrexed only), which I plan to stay on until my next scans. It’s only a 10-minute infusion this time, rather than the 3-hour infusion of the chemo doublet, so hopefully I’ll be able to lead a relatively normal life while on this protocol.” 

“The concurrent chemoradiation was hard (particularly my last cycle, as the effects were cumulative). In terms of the impact of treatment on my life, I suppose the most disruptive bit was having to go into hospital every Monday-Friday for 6 weeks to have the radiotherapy. But while it was a bit of a long haul, I actually found going in quite empowering. It was really positive to feel that I was actually doing something active every day to attack the cancer, so I never really saw it in a negative way.”

“The good news is that my interim scan results have shown that I have responded positively to my treatment so far; the soft tissue mass surrounding my scapula and right hilar lymph node has resolved, and the tumour in my lung has shrunk significantly.

“As the effects of radiotherapy can take a while to show up, we probably won’t know just how well I have responded until July… but for now, things feel pretty good.”

Support along the way

Gini describes the life affirming support she’s received throughout this time: “I’ve seen a lot of positivity and kindness in these last 6 months. I have been astounded by the support I have received from family, friends, colleagues and (relative) strangers online.

“People have been so amazing both in terms of supporting me, but also helping to raise some money for the Roy Castle Lung Cancer Foundation to help support others with lung cancer.

“I have found the charity’s campaigns containing other patient stories particularly helpful and hopeful. I’m also on the lung cancer forum which is really supportive.

Lung cancer is no longer the death sentence it used to be. Every year, new, effective treatments are coming through the pipeline, so it’s really important to get checked out and advocate for yourself.

“Even since I was diagnosed in December, two new treatments for my specific type of cancer (which were not available then) are available now. So, I have a lot of hope that if/when my current treatment line stops being effective, there will be something else to help.”