Robert’s Story

During June 2019, Robert was diagnosed with a stage 4 melanoma. He completed 3 ipilimumab treatments and a further 15 months of nivolumab treatment. He responded well and his tumours started to reduce other than one which was later found out to be Adreno-Cortical Cancer. Five years on from the removal of the left adrenal and six and a half years after his stage 4 diagnosis, Robert is now no evidence of disease (NED). Here, he very kindly shares his full story.

“I was told that I had only 9 moths to live in July 2019 if I received no treatment. To be here now, 5 years after finishing immunotherapy treatment is just amazing – that’s why I want to share it.”

After having malignant moles removed from my lower back in 2001 and then again from my right shoulder and chest in 2013, I was having yearly private skin examinations with a dermatologist. Despite an exam in March 2019 and subsequent ultrasound scan of my underarm lymph nodes, which showed nothing, I was diagnosed with stage 4 metastatic melanoma in July 2019 after getting some unusual skin growths on my left arm and chest checked out. The removal and analysis of some of the “warts” plus a CT scan (again paid for privately) showed widespread melanoma across my body, but not in my head, bones or spine.

“They gave me 4 treatment options and the doctor recommended immunotherapy treatment –

although it was relatively new in the UK at that point.”

On 18^th July 2019, I was given 4 treatment options and the doctor recommended immunotherapy treatment – although it was relatively new in the UK at that point (just approved by NICE 3 years previously). He said that there was a 50% chance of a cure, but a 2% chance that the treatment might kill me!

I went for the immunotherapy treatment, ipilimumab and nivolumab once every 4 weeks. Due to some issues, it was decided to stop ipilimumab after three sessions (rather than four) but my CT scan in October 2019 had shown a “significant improvement”. I continued nivolumab alone for another fifteen months to be sure I had sufficient treatment to allow me to go back on it again if needed. I was told that if I asked to stop it, then I could not go back on again.

“This was especially difficult given the declaration of the Covid-19 outbreak in February 2020.”

This was especially difficult given the declaration of the Covid-19 outbreak in February 2020. I was asked if I wanted to stop coming into hospital for the treatment as catching Covid could be fatal. From the reduced numbers attending each session from then, I think that roughly one third of patients gave up! Obviously there were a lot of unknowns at that time both on the effectiveness and side-effects of the treatment and of Covid. However, I know that I contracted Covid from my early hospital visits in August / September 2019 due to the illness I then suffered and put down to side-effects of the treatment, but I passed it on to two relatives I met at a family funeral in October 2019. Once was off work for months and the other had to go into hospital with it!

“The immunotherapy brought on fairly severe rheumatism, but this reduced over time.”

One interesting early side-effect of the immunotherapy was the effect of looking at the damage I’d done to my body through accidents during my life (mainly due to riding and falling off motorcycles). The immunotherapy brought on fairly severe rheumatism, but this reduced over time.

My next CT scan was in March 2020 revealed that virtually all tumours had gone after roughly one third of the treatment, other than one which was actually growing – my left adrenal gland. A tumour on my right adrenal had disappeared under treatment. It was decided to remove this tumour and after months of delays (due to Covid) my left adrenal was laparoscopically removed on 2^nd December 2020.

“Much to everyone’s amazement, it was found to have been a very advanced
Adreno-Cortical Cancer.”

Much to everyone’s amazement, it was found to have been a very advanced and rare adrenal cortical cancer (ACC), for which there are limited treatments. Less than 300 people are diagnosed with this cancer in the UK each year.

In my case, due no doubt to the excellent surgical skills of my surgical team, it had not spread. This is incredible given that the KI-67 index for my tumour was 0% and a “high” score is for anything over 20%.

I am still cancer free now 5 years on from the removal of the left adrenal and six and a half years after diagnosis of stage 4 metastatic melanoma.

In summary, I was lucky that the immunotherapy was available for me, that it did work and that the regular scans picked up the adrenal cancer which would not otherwise have been seen until too late!

What advice would you give to other melanoma patients?

Just get on with the treatment, attend all sessions and – keep a positive outlook!

You can learn more about the types of melanoma, here.