Alastair’s Story

“I didn’t think of melanoma as a possibility, despite being a GP.”

During 2017, Alastair was diagnosed with an extremely rare condition called melanoma associated retinopathy. His melanoma treatment has included a groin node clearance and laparoscopic pelvic node clearance and radiotherapy to groin and pelvis in 2024. He is now receiving a course of pembrolizumab. He has also had high dose steroids, immunoglobulin, plasma exchange and mycophenolate to treat his retinopathy. Here he has very kindly shared his story with us:

My lesion had been present for many years. As it was on my heel and not pigmented (no colour), I didn’t think of melanoma as a possibility, despite being a GP. When it bled and I attended a podiatrist they advised me to see a GP who referred me to dermatology. They were as surprised as I was when the biopsy came back as melanoma.

“A year or so later I experienced bizarre visual disturbance and was admitted to hospital.”

After a wide local excision nothing happened for several years until I noticed a local nodule near where the original melanoma was which turned out to be a recurrence. I had a further local excision, quickly followed by a wide local excision. A year or so later I experienced bizarre visual disturbance and was admitted to hospital. Initially it was thought to be optic neuritis/multiple sclerosis, but when treatment for this failed, further tests revealed it was an extremely rare condition called melanoma associated retinopathy.

“This surprisingly has stabilised and even improved my vision even though the outlook for this condition is poor and I was initially advised to expect rapid visual loss.”

I received high dose steroids and intravenous immunoglobulin but as there was no change with my sight, I was given plasma exchange treatment which I continue receiving on a maintenance basis and some nine months ago I also commenced on an immunosuppressive treatment called mycophenolate. This surprisingly has stabilised and even improved my vision even though the outlook for this condition is poor and I was initially advised to expect rapid visual loss.

The presence of the retinopathy raised a concern of recurrence of melanoma, and this was confirmed when PET scans showed a ‘hot’ groin node. I had the lymph nodes removed from my groin area, but a follow up CT scan showed spread to pelvic nodes. These were removed laparoscopically by the urology team. The next CT scans showed increasing lymphatic spread. My oncologist was against starting immunotherapy treatment due to the high risk of making my retinopathy worse, so we opted for a course of radiotherapy. Although this did shrink disease, a new node appeared. Therefore, we agreed I would start pembrolizumab and recently had my 7^th session this week. I did have an initial flare up of eye symptoms which settled quickly with my steroid dose increased. I have had significantly more side effects from my plasma exchange – fever, low blood pressure, extreme fatigue – which is still being assessed but is thought to be due to an immune reaction to some component used in the exchange, made worse by my immune system being in overdrive. So, it’s never a dull moment but I’m so lucky to have so many skilled people taking care of me.

I recently received my latest CT results which show an excellent response to immunotherapy. All the affected lymph nodes have returned to normal size and there is no evidence of new disease.

What advice would you give to other melanoma patients?

My advice to others would be to report any unusual lesions or symptoms as soon as possible, even if they don’t fit the typical melanoma picture.

 Why is melanoma focus important to you?

I do use the Melanoma Focus website frequently and find the quality of information excellent. In particular, as a retired GP the professional educational resources are of a very high standard.