Angela’s Story

Angela was diagnosed with stage 4 melanoma in May 2021 after experiencing issues with her breathing. She was placed on targeted therapy (dabrafenib & trametinib) and now has 3 monthly oncology appointments and 6 monthly CT scans. Her treatment continues and here she very kindly shares her story:

“Be your own advocate, you know your own body better than anyone else and know when something isn’t quite right.”

In 2015 I noticed a mole on my abdomen getting larger and darker, and after seeing a Facebook post by someone in my cycling club who was getting treated for melanoma, I thought I’d best get checked out. The doctor referred me to a specialist who thought it was OK but took a biopsy all the same. The results came back as melanoma in-situ, and I was booked in urgently to have a wide local excision. Thankfully they managed to take out all the pre-cancerous cells and I was told to just carry on with my life.

In May 2021 I was experiencing breathing problems whilst training for a triathlon. I originally thought I may have asthma. At the same time, I noticed a mole on my back getting darker, so I called the doctor’s surgery and spoke to a nurse as this was during the Covid-19 pandemic and it was impossible to get a face-to-face appointment. I explained to the nurse that I was worried about my breathing, and she tried to tell me it was something Covid related, which I knew it wasn’t, so I pushed really hard for an x-ray. I think the only reason they booked me in was because I said I was worried I could have lung cancer, not thinking for one moment that I did but I knew something was definitely wrong. Once I’d said this, she booked me in for an X-ray. At the same time, I was asked to supply photos of my suspicious mole, once they’d looked at the pictures, they said they’d put me on a 2-week urgent referral pathway to get it checked out.

“I had melanoma, not lung cancer and because the tumours were in my lung it was in the advanced stage.”

I had a chest X-ray quite quickly and received a call from the hospital whilst I was at work the following day informing me that there was a shadow on my right lung which they suspected was lung cancer, even though I’d never smoked a day in my life. From then on it was a bit of a whirlwind for a couple of weeks…. covid tests to allow me to go to the hospital for a CT scan, PET scan, head scan and an EBUS procedure to take a biopsy from the mass in my lung. A few weeks later I received a call from a respiratory doctor at the hospital to let me know that the biopsy results confirmed that I had melanoma, not lung cancer and because the tumours were in my lung it was in the advanced stage. The doctor stated that there was nothing more he could do so, and he had passed my file over to the skin team and that I should wait for someone to contact me.

“The result from this mole removal was Stage 1 melanoma but by this point I hardly cared as I was trying to absorb the fact that I had Stage 4 melanoma!”

A while after this I finally got an appointment to get my mole checked out after the doctor’s surgery forgot to pass my referral over to a dermatologist. I went in for my appointment expecting a biopsy to be taken but as soon as the doctor saw the mole on my back, he said he was going to do a wide local excision (WLE) there and then as it was almost definitely melanoma. The result from this mole removal was stage 1 melanoma but by this point I hardly cared as I was trying to absorb the fact that I also had stage 4 melanoma!

“The next few months were the very worst part of my diagnosis.”

The next few months were the very worst part of my diagnosis. I had been told my biopsy had been sent off to be tested for the BRAF gene and that the oncologist would not see me until the results were back. I felt very alone and scared due to the lack of contact with anyone. I was also in the worst pain I’d ever experienced in my shoulder blade, which I later found out was a result of the fluid buildup in my lung’s pleural lining.

Whilst waiting for the BRAF results I was admitted to hospital to drain a large amount of fluid off my lung as the tumours were growing so quickly. I had an operation to prevent my lung collapsing again and after a week was sent home with a chest drain in place. I also received the BRAF results when I was in hospital and I discovered that I was BRAF positive.

“I could soon walk more than a few steps without getting out of breath, I was so happy that I could walk my dog Holly again.”

Shortly after returning home from hospital, I started on targeted therapy (dabrafenib & trametinib), this was 10 weeks after the initial x-ray. The treatment was fantastic and started working almost immediately and I could soon walk more than a few steps without getting out of breath; I was so happy that I could walk my dog Holly again. I experienced quite a few side effects from the treatment in the first year but after that, things settled down considerably. The treatment continues to work and I’m now on 3 monthly oncology appointments and 6 monthly CT scans. I’m over the moon that I’m doing well but it can be tough mentally knowing that the treatment could stop working any day.

“I’m over the moon that I’m doing well but it can be tough mentally knowing that the treatment could stop working any day.”

What advice would you give to other melanoma patients?

Be your own advocate, you know your own body better than anyone else and know when something isn’t quite right. Don’t be scared to push for further investigations or to get a second opinion if you need one. Surround yourself with people that have a positive mindset and help you live your life to the full. Exercise is amazing if you’re feeling stressed or worried about something. Try to make contact with patients in a similar situation to yourself; I found it particularly useful when I discovered the Melanomamates Facebook group. I read that other people had been on the same treatment as I’m on for many years, which gave me hope as my oncologist informed me that on average patients are only on the treatment for a year before it stops working. Through this Facebook group I also discovered Melanoma Focus and the Melanoma Patient Conference. Remember that everyone is different and responds to treatment differently. Take each day as it comes and try not to look too far ahead, appreciate today.

Why is Melanoma Focus important to you?

Melanoma Focus is a great source of information and although I haven’t used some of the resources, I know that there is a specialist Melanoma Helpline available if ever I need to talk to someone about melanoma related issues. The TrialFinder is also a valuable resource for anyone looking to find a suitable trial for them if they are at that stage in their treatment. Before I knew about Melanoma Focus, I accessed other sites but it’s great to have a resource that focuses on melanoma. I attended the Melanoma Patient Conference in 2024 and thought it was absolutely fantastic. It’s amazing value for money, there are amazing informative talks and it’s a way to meet other melanoma patients. I have signed up again for 2025 and it will hopefully be an annual event for me. I took part in the 100 Miles in May in 2024 for Melanoma Focus & Skcin charities which was great to raise money with other patients and friends/relatives of patients.