You’ve heard of A Tale of Two Cities. Well, Sheryl’s story is a Tale of Two Lung Cancers. Originally diagnosed as EGFR+ non-small cell cancer, Sheryl’s cancer then mutated to small cell disease. This is rare. So much so that Sheryl couldn’t find anyone else in the UK who has had the same experience.
She shares her story now so that anyone else who goes through this can feel a little less alone…
“It started back in early November 2020 when I developed back pain. Covid rules had relaxed and we could eat in restaurants outside. It was quite chilly, so I thought that’s what had triggered the pain.
“However, something just didn’t feel right. The pain was worse at night, and I always follow the advice that if something is keeping you up at night, you need to do something about it.
“I’m also on quite high alert to stuff like this; about 15 years ago I had a hysterectomy due to precancerous cells in my uterus. They left behind my ovaries however, so in my head I was heading down a gynie route for further investigation.
“My doctor responded immediately and I was sent for blood tests. The results raised a red flag. I called my sister-in-law, who works within gynie services in our local NHS hospital, and she pushed for her consultant to see me. He sent me for a precautionary CT scan. At the last minute, he ticked to include my chest in the scan. To this day, he’s still not sure why, but I am so grateful he did.
“The CT scan revealed a 5cm tumour in my lung. Then a PET scan found cancer in three places in my spine and in the lymph nodes in my chest.
“I was in shock. Lung cancer felt so random, and the fact that it had spread was unbelievable. Classed as a non-smoker, I considered myself a fit and active 55 year old. I wasn’t breathless, I wasn’t coughing up blood or suffering from constant chest infections. I’d even had Covid without any long-term issues. How could it be lung cancer?
From EGFR+ to small cell lung cancer
“My biopsy confirmed I had EGFR+ non-small cell lung cancer. I had some radiotherapy on my back and then went onto the targeted therapy, Osimertinib. I can honestly say, from that moment, life almost went back to normal.
“My side effects were very minimal. I carried on with my fitness and went back to work. It certainly wasn’t the picture you have of stage 4 lung cancer. There were even some days when I would forget I had cancer!
“Whilst we are all individuals, it was always so comforting to be able to read so many positive stories of people still living well for many years after starting Osi. However, in the back of my head, I was always aware that the cancer would become resistant to the treatment at some point.
“It was in October 2022, and I was on holiday with my husband. I started getting pain in my hip. It spread down my leg, and we flew home a day early because I couldn’t walk.
“The scan showed that there was a spot of cancer pressing on my sciatic nerve. However, as all other areas on the scan were stable, I remained on Osimertinib and had five sessions of radiotherapy. By Christmas, I was up and walking, managed a planned trip to Saltzburg and all was good again. Sadly, this didn’t last.
Diagnosed all over again
“At the start of January, I started to get back pain again. This time it was at the top of my back. My stomach also started to swell and overnight and I developed lumps in my neck.
I was told my cancer had progressed to my liver and that it had transformed; I now had small cell lung cancer. This is rare. It only happens to around 10% of EGFR+ patients.
“I think it was at this moment that I really felt that I had cancer. When I was first diagnosed, it was like I was watching it happen to someone else. I had felt fine. I didn’t look any different. Now, I felt ill and needed urgent chemotherapy. Telling my family and close friends all over again was just so heartbreaking.
“I was told I would lose my hair. I could try a cold cap but it probably wouldn’t save it. I thought I had prepared myself for this. I didn’t care about my hair; I just wanted to feel better. But when that first clump came out, it hit me hard.
“I had my hair cut short to make it easier. I went from having lots of thick hair to a really short cropped style… and I loved it! I wish I’d chopped it off years ago! Within a matter of days though it was falling out rapidly, so I had what was remaining completely shaved off and felt so much better being back in control.
Don’t be fearful of chemo
“I was terrified about having chemotherapy but a friend who had been treated for breast cancer reassured me. She said, ‘It’s never as bad as you think’, and she was right. The lumps in my neck started to go down pretty quickly and I started to feel better. I had some nausea and was tired but soon found my rhythm.
“After the first session, my consultant added immunotherapy to my treatment. I still coped ok. After three sessions, I had a scan, and it was all showing a positive response. I managed to get back to some light fitness and went back to work part time. I even managed to get away on several holidays.
“I finished chemo and remained on immunotherapy. Everything seemed good and then in September, I was told the cancer was growing again. I was completely floored. Back in January, it was clear something was wrong. This time, I felt well, no pain or symptoms so it came completely out of the blue.
“It was a real blow and I think it was harder to bear because my situation – having EGFR+ non-small cell lung cancer, and then small cell – is so rare. I wasn’t able to find anyone else in the UK who had gone through this.
“I started chatting to people in the US via social media and found a couple of people who had had a similar experience. That was how I found out that they had remained on Osimertinib whereas my targeted treatment had stopped in January.
“I spoke to my consultant, and he confirmed remaining on Osi wasn’t an option on the NHS despite the fact that I still had EGFR+ cells as well as small cell. I don’t think I fully understood that at first. I’d thought the non-small cells had been wiped and now I only had small cell lung cancer.
When my consultant explained that I still had the two, and whilst the chemo would most likely work against the small cell cancer, it could possibly work against the remaining EGFR+ cancer as well. This lack of certainty worried me. I am very lucky that my husband has private healthcare through his job and they agreed to fund both the chemo and the Osi.
“It doesn’t sit right with me. I don’t think it’s fair that I should be able to have both treatments whereas others cannot, but I also have to do whatever I can to live with this disease for as long as I possibly can. I also like to think that I could be helping people in the future. My experience could help provide research and evidence that sees this combination treatment get approved on the NHS.
“I think this is why I also wanted to share my story. I want to try and offer some hope to others going through this, and in particular people who go through the same rare experience as me. I have found it really hard not being able to connect with anyone originally diagnosed with EGFR+ lung cancer and then small cell lung cancer, so if I can be that person for someone else, then that’s a good thing. And you have to grab as many good things as you possibly can, for as long as you can.”