Scott Kelly: Lessons learned

Lessons learned

Hello everyone, my name is Scott. I’m in my late 50s and have been living with Stage 4 kidney cancer (clear cell renal cell carcinoma – ccRCC) since 2019. Unfortunately, it took almost a year to receive a formal diagnosis, despite multiple visits to my GP. I was repeatedly dismissed until I collapsed in public. Now based in the South East of England, I’m originally from Scotland and am currently under the care of oncology at the Royal Surrey County Hospital in Guildford, where I owe my ongoing survival.

The road to diagnosis and treatment

In July 2019, I underwent a “converted to open” radical nephrectomy, which, although life-saving, left me with persistent post-operative issues. The surgery also revealed multiple RCC metastases, mainly in my lungs and lymph glands, following the removal of a 1.42kg kidney. Initially, I was terrified when I received the diagnosis, but over time, I’ve learned to live with it and am always learning more along the way.

Starting a support group

Almost five years into my cancer journey, in mid-2024, I launched a patient and carer support group called 3CKC (3 Counties Kidney Cancer). We meet bi-monthly in Camberley, Surrey, to connect and share our experiences. I’m incredibly proud to be part of this initiative, as many of us face similar struggles balancing daily life, medications, and cancer treatment.

Rather than starting from the beginning of my journey, I’ve decided to share my story from the present, focusing on the “lessons learned” that have helped me along the way.

The power of peer support

The most invaluable source of practical information has come from fellow patients. People who have already walked the path you’re on are often more than willing to share their experiences and solutions. These shared stories have been a lifeline in navigating the cancer journey.

Navigating the NHS: a challenging system

I’ve found numerous online resources, but many of them don’t explain how “the system” works. In my experience, the NHS operates at its own pace, moving patients through different departments, which can be frustrating. I started with urology for surgery and post-op recovery, only to be referred to oncology months later, followed by endocrinology. A simple booklet explaining “who does what” in the system would have been incredibly useful. Navigating your cancer diagnosis and all the new medical terminology can be overwhelming.

One of the harsh truths of living with cancer is that you can’t change the results of blood tests, CT scans, or MRIs. The term “scanxiety” is very real, and although it’s tempting to worry about results, it’s ultimately unhelpful. I’ve learned to focus on moving forward, knowing that the results are simply data that help guide my decisions.

Dealing with medication side effects

Medication side effects are inevitable. My advice: don’t wait until side effects become unmanageable. Notify your oncology team or GP early. Trust me, learning this lesson the hard way saved me from further complications.

Treatment plans and clinical trials

In the NHS, there are typically three (or four) lines of treatment, and the rules can change frequently. Once your NHS treatment options are exhausted, clinical trials may be the next step. It’s essential to plan your strategy carefully.

After a six-month break from Cabozantinib (CABO), I was moved to the third line of treatment, which involves a combination of Lenvatinib and Everolimus. Before that, I was on CABO as my second-line treatment, and prior to that, I was on immunotherapy (Ipilimumab and Nivolumab). Each treatment has its own set of challenges, and I’ve had to adjust to various side effects along the way.

The early symptoms and diagnosis

My cancer journey began in September 2018 when I first noticed symptoms. After numerous visits to my GP, I was sent for tests only after the symptoms became unbearable in June 2019. The scans revealed a 14 cm tumour that had overtaken my right kidney. Within weeks, I underwent a radical nephrectomy to remove the kidney, which weighed an astounding 1.42kg (considering a normal kidney weighs 

around 150g).

Post-op struggles 

Recovery from surgery was tough. Despite ongoing pain, I’ve managed to find a new normal. Post-op, I was diagnosed with RCC (clear cell) with metastases in my lungs and lymph nodes. I then started immunotherapy (Ipilimumab and Nivolumab), but my body rejected it, leading to several hospitalisations and further complications. I later switched to Cabozantinib, a targeted therapy, which I’m still on today.

Managing side effects

The challenges of living with cancer have been profound. I’ve experienced severe side effects, including mouth ulcers, painful skin reactions, and even a damaged endocrine system, meaning I’ll need hormone replacements for life. I’ve gained weight due to steroid and hormone treatments, which has been an adjustment. My feet have also been affected by Cabozantinib, with skin peeling off in sheets. Managing this, along with regular breaks from treatment, has been crucial for maintaining my quality of life.

Finding normalcy again

Despite these challenges, I’ve found ways to manage and keep moving forward. Walking, although difficult at times, is still possible, and I find it helps maintain some normalcy.

The importance of support

Throughout this journey, I’ve learned the importance of support, both from fellow patients and healthcare professionals. My cancer nurse, online forums, and the team at Maggie’s Centres have been invaluable in guiding me through the ups and downs.

A message from me

If you’re facing a similar journey, remember that there’s no one-size-fits-all approach to managing cancer. Reach out to your oncologist, ask questions, and be proactive in managing your treatment plan.

And finally, as I continue to share my story, I hope to inspire others facing kidney cancer and offer a sense of community and hope.