Ross’ Story

During 2015 Ross was diagnosed with stage 2a cutaneous melanoma. He underwent a Wide Local Excision (WLE) and a Sentinel Lymph Node Biopsy (SLNB), his results came back negative and after five years of surveillance he was discharged in 2020. Unfortunately, in 2023 it was discovered that the melanoma had spread through his body which also resulted in the blinding of one eye. Two years later he is now no evidence of disease (NED), here he very kindly shares his story:

“I was called back to the hospital about a month later to be informed that it was stage 2a cutaneous melanoma, my newborn son had just been born and I was completely terrified.”

I was first diagnosed with melanoma in the summer of 2015, a grey lump had been growing on my back that was becoming uncomfortable. Two visits to my GP resulted in dismissal and only on the third visit was I referred for “minor surgery” at the GP practice. Fortunately, the operating GP refused to undertake the procedure and referred me to the skin cancer pathway at my local hospital. I had the lesion removed and carried on with my life. I was called back to the hospital about a month later to be informed that it was stage 2a cutaneous melanoma, my newborn son had just been born and I was completely terrified.

Following the diagnosis, I underwent body photography for the remaining moles and also a Wide Local Excision (WLE) and a Sentinel Lymph Node Biopsy (SLNB) from both arm pits. On my 30th birthday the results came back negative so the melanoma had not spread further. I was put onto surveillance for 5 years with dermatology, eventually being discharged in 2020.

“I was driving to my local gym when I suddenly went blind, there was a large flash of white light.”

Then in November 2023 I was driving to my local gym when I suddenly went blind, there was a large flash of white light, and I had no choice but to sit still in the car until the event had passed. I managed to drive home but noted that a “crescent” shape had formed in the vision in my right eye. We attended A&E and was advised that something was pressing on my retinal which had caused it to detach.

Multiple investigations, scans and opinions were sought which all came back inconclusive. I decided to seek a private opinion due to lack of progress and the worry that the longer a retinal is detached the less chance there is of getting your sight back. By this point I had gone almost completely blind in my right eye. My private consultant identified a “mass of blood” but was unable to tell me the cause, I was eventually referred to the Liverpool specialist eye cancer centre where after 1 scan with their specialist equipment I was informed there was a tumour behind my eye, likely to be melanoma but due to the “mess” they were unable to see it to be sure.

I was scheduled to have my eye removed the following day and an implant put in its place, which was done under local anaesthesia with sedation, a decision I came to regret. I also underwent an ultrasound scan of my liver to determine any spread from what they thought was a new ocular melanoma. I was informed just before I went down to theatre that there were lesions in my liver as well.

What followed was 2 days of the worst pain I could have ever imagined, having the optic nerve cut. I contemplated an end to my life there and then, the pain was so unbearable, and no form of pain relief was able to supress it. I was unable to open my eyes for 2 days nor move them in any direction as the pain was so severe. I have no recollection of those first few days, who was in the room with me, what happened or what was said, the pain was so focused it took all my energy to try and manage it.

“Given the pain and loneliness I was feeling it was a massive relief to board the train and return home to see my children.”

By day 3 the pain had thankfully started to subside and I was allowed to go home subject to an MRI scan of my liver as it was suspected that I had ocular melanoma. I live in the Westcountry and having to come to Liverpool had meant being a long way from my family for nearly a week. Given the pain and loneliness I was feeling, it was a massive relief to board the train and return home to see my children.

I was referred to the national artificial eye service where plans were made to be fitted with a lens cap that matched my good eye.

I had my first appointment with a local oncologist (referred there by mistake) who informed me that the MRI scan in Liverpool not only confirmed lesions in my liver but also identified lesions in my lungs. I was then referred for a PET CT Scan and MRI of my head to confirm the extent of the spread of the disease. I underwent my first session immunotherapy before my care was then transferred.

“I had lesions in my brain, liver, lungs and that melanoma has indeed metastasised to my eye.”

After my scans, my follow up appointment confirmed that I had lesions in my brain, liver, lungs and that the melanoma has indeed metastasised to my eye.

It was confirmed this was a recurrence of the skin lesion on my back diagnosed in 2015 and not a new ocular melanoma as previously suspected. I underwent further immunotherapy and also radiotherapy for the lesions in my brain. Two months into my treatment I was informed that I had a complete radiological response in my body to the immunotherapy and that the radiotherapy (combined with immunotherapy) had also left my brain NED (no evidence of disease). Suffice to say I was in complete shock and so happy/grateful….but another battle was about to begin.

Following my fourth round of dual immunotherapy (2 drugs combined), I developed immunotherapy/steroid related hepatitis, diabetes, pancreatitis, pneumonitis and adrenal insufficiency. This resulted in many months of hospital visits and stays to try and bring my immune system under control as it continued to attack my internal organs.

Click here to see further information on the side effects of immunotherapy treatment

Thankfully, two years later I am still NED (No Evidence of Disease) and only left with the adrenal insufficiency, but it was quite the ride!

What advice would you give to other melanoma patients? 

To never give up, I have seen patients that think they are at the point of no return and see miraculous things happen. Stay vigilant, melanoma is insidious and can appear anywhere on/in the body.