Hi, my name is Andy, and I am 34 years old.
I have been on my kidney cancer journey for 12 ½ years now. I was diagnosed just a few weeks before my 22nd birthday. My symptoms started aged 21, in 2010. I was fresh out of university and was living with friends in Clapham at the time. I had, for a few weeks, been feeling under the weather and had developed a slight swelling on the right-hand side of my abdomen. Like any 21-year-old enjoying my London graduate lifestyle, I told myself this was nothing to worry about. I remember being on a night out in London with my friends and needing to go home early due to feeling unwell. When I got home, I was suffering with awful pains in my right side, to the point I thought I was going to pass out. That was the closest I have ever come to calling an ambulance for myself. The pain eventually subsided, and I fell asleep, but the next morning when I went to the toilet, I was shocked to see that my urine was a deep, red wine colour. I called my flat mate and long-time friend into the bathroom to have a look, and he insisted I get myself to the doctors (as we were both pretty sure it was blood). My GP didn’t seem too concerned and suspected I had kidney stones. I was sent to see a consultant, who shared his suspicion that I had kidney stones; however, he was also puzzled by the large swelling on the right-hand side of my abdomen. I was sent for some blood tests and my first ever CT scan.
Having had my mind set at ease somewhat by my GP and the specialist, I was called to collect my results and went along alone, suited, and booted, ready to head straight into the office after my morning appointment. On the way to my appointment, I received a phone call directly from the consultant checking that I was on my way. I remember thinking nothing of it at the time, as I had my scan done through my insurance and thought this might be the standard process at a private clinic. It was during that appointment that I received the news that I had a 16 cm malignant tumour on my right kidney, the size of a large grapefruit or size 1 football. At this point my world stopped. Everything else the consultant said to me was just a haze, like I was walking around in a daydream, having some sort of out of body experience. The only two questions I managed to utter to my consultant were ‘Do I have cancer?’ and ‘Am I going to die?’.
I was in such a state of shock that I caught a train out of London, to my family home in Bexley. I rang my Mum on the way and asked her to collect me from the station. She knew I had the appointment, and she knew something was wrong. I got in the car and just sobbed the entire way home, we didn’t speak, I didn’t tell her the news, she just drove with one hand on the wheel and one hand holding mine.
The next few days were dark for me. I slowly told my close family and friends the news and went for further scans at the hospital. This period was not helped by the fact that on one trip to my local hospital I managed to pick up a norovirus which made me throw up for almost 48 hours solid. Balls were put into motion to get my kidney and tumour removed as soon as possible, and within 3 weeks of the first appointment I had a right nephrectomy and was recovering in hospital.
In the months that followed I was referred to a uro-oncologist. After my first scan, it was noticed that there had been a small amount of spread to some lymph nodes, which then kicked off my first experience of immunotherapy.
Later that year I underwent four weeks of intensive immunotherapy treatment called interleukin 2 at St Barts Hospital in London. This was by far the hardest treatment I have ever endured, and once it was finished had lost almost 2 stone in weight. This treatment was, however, worth the suffering as in the January of 2011, just under a year after diagnosis, I received an all clear on my scan post the treatment and entered remission.
I celebrated by putting a deposit down on my own flat and enjoyed my all-clear period for about two years before I met my now wife, Charlotte, in November 2012. I was upfront with Charlotte about my previous treatment and told her I was still having regular scans to check for recurrence. We enjoyed a weekend break together to Rome in early April 2013 and following our return I collected the results of my latest scan which had taken place in February. Unfortunately, the cancer had returned. Telling Charlotte, my girlfriend of only 4 months was awful. She was only 22 at the time, I was still only 24 – I gave her the option to walk away, given that our relationship was in such early stages. She refused, and needless to say our relationship became quite serious quite quickly after the diagnosis – there seemed no point in beating around the bush anymore!
I started axitinib in May 2013 with a view to shrink my new tumours for possible surgery. I found the side effects very hard going, and that entire summer is something of a blur as I spent my days inside the flat with the blinds closed. I suffered badly with fatigue, diarrhoea and also hand-foot syndrome. Charlotte moved into my flat in August 2013, with a view to being around to help me after my surgery to remove two further sites of growth near to my bowel and in the kidney bed area, which took place in September. The surgeons were confident they removed all the cancer at the time, but unfortunately some had stuck around. I underwent radio-frequency ablation therapy (RFA) in March 2014, which was performed under general anaesthethic, and continued axitinib until we received the news that it had stopped working in November 2014. The bad news didn’t get the better of me though, and I proposed to Charlotte in South Africa a few weeks later. We continued axitinib in the hope it would work again, but ended up needing to swap to everolimus in March 2015.
Everolimus was a drug that did not work for me at all, and unfortunately, the cancer progressed and so I switched to pazopanib in August 2015. Pazopanib worked for 7 months. I found the side effects more tolerable than the previous drugs I had taken – with the side effect that affected me most being the change in hair colour. My hair changed completely from very dark brown to bright white (including eyebrows, eye lashes and body hair!). I owe a lot of different women in my life thanks for helping me dye my hair during those months!
Pazopanib stopped working for me in March 2016 and I started on nivolumab in April – just a month before my wedding to Charlotte. Having spent years taking various different drugs, nivolumab was like a breath of fresh air. It was not taken orally, like most of the other drugs I had taken, and I had to go to the hospital every two weeks for an infusion. However, I experienced barely any side effects. Charlotte and I took the opportunity to make the most of my increased energy, with lots of holidays. I took nivolumab for 8 months, although this was split over an 18 month period as I had to take a break whilst being treated for an unrelated neurological disease that I was diagnosed with in August 2016. This 18 month period was not all plain sailing… during December 2016 and January 2017 I had four admissions into hospital with infections and bowel troubles and a colonoscopy revealed a very large tumour in my colon, which had been missed on my regular scans. A colectomy was performed in January 2017, which resolved my bowel problems and I continued with nivolumab.
In August 2017, I started to lose a lot of weight and my September scan date was brought forward. As suspected by my consultant, nivolumab had stopped working for me (hence the weight loss) and my cancer was on the move once again. I started on 40mg of cabozantinib in September 2017, but this was increased to 60mg in December 2017, when the results weren’t quite as hoped. Cabozantinib had tough side effects, but crucially it kept my tumours stable – which made the side effects a lot easier to deal with.
During this time Charlotte and I decided that we wanted to start a family. Due to the toxic nature of the drugs I take, we had been advised that it was not safe for us to try for a baby naturally. I had frozen my sperm a few years earlier (during a treatment break), and so we started enquiries into IVF. Between visiting our GP for a referral and starting treatment it was 10 months. These 10 months prior to starting treatment were harder than the actual treatment, as we were hit with countless obstacles, delays, and confrontation on the admin side. It was exhausting – however, we were delighted that we fell pregnant on our first cycle. Our beautiful daughter, Ada was born in February 2020. Becoming a dad is the greatest thing I have ever done.
Our joy was short lived as when Ada was just 12 days old, we found out that after 2 years cabozantinib was no longer working. We had also exhausted all possible treatment options on the NHS. Thankfully, my employer offers great private healthcare and so I was able to transition over to a new consultant who could offer options currently only offered as first or second line treatment options on the NHS. This has been one of the challenges as I have progressed on my cancer journey. The more treatment options you work your way through, the more you are ruled out of other options based on current NICE guidelines. It is very scary always having to consider your ‘plan B’ in case you run out of options, even more scary that not everyone has access to a ‘plan B’.
Starting my new treatment (a lenvatinib plus everolimus combination) coincided with most of the world being plunged into lockdown due to Covid-19, and of course having a newborn. Adjusting to the new side effects was tough during lockdown, and hard on our family in general having no support. I did eventually adjust, and I was lucky enough to spend 2 ½ years on this drug, with varying degrees of stability. I also underwent some radiotherapy in October 2021 to help combat the pain I experience from my psoas tumour pressing on nerves around my hip and spine.
Unfortunately, my October 2022 scan showed growth in all areas and so I have just started a nivolumab and ipililumab combination treatment – we are keeping everything crossed that this helps stabilise things again.
I have met so many different specialists and consultants over the years, and one thing they have in common is that they always comment on how young I was to have been diagnosed with kidney cancer. I was not the ‘typical’ kidney cancer patient, being aged 22, fit and healthy. This just goes to show how important it is to recognise signs in your own body when things don’t seem right, as even my initial doctor did not suspect my diagnosis.
The last 12 years have been a huge journey, but amongst the side-effects, hospital admissions, surgeries, there have been some great highs and it is important to remember that a diagnosis of advanced kidney cancer, doesn’t mean that you cannot enjoy life. I am thankful to have worked for three incredibly understanding employers, who have supported me fully throughout all my journey and have allowed me paid time off sick and flexible working where required. I currently work full time, and my employer is flexible with home working. This enables me to lead a life as normal as possible. We know that I won’t get better, but the treatments and care I have had over the years have enabled me to enjoy amazing holidays, get married, buy a house with my wife, give a home to three cats, have a child, and create memories with friends and family.
My day-to-day life now consists of doing everything a normal 34-year-old married man and father would do. I work full-time, juggling parental responsibilities with Charlotte. I go out and see my family and friends. I go and see my beloved West Ham every other weekend as a season ticket holder. I cherish my time at home and family day trips with my wife and daughter. To the outside world I am normal. However, all the normal things I do are shaped by my illness and the side effects of my drugs. Every day for me is a battle against the sore itchy skin, hand-foot syndrome, relentless fatigue, diarrhoea, fluctuating appetite and weight, tongue ulcers and not being able to eat the food I want to eat. My life is a constant battle, every day of the week, and this illness throws hurdles in the way of everything, but my viewpoint is that every day I must leap over those hurdles, with a smile on my face so I can live my life to the full, because if I didn’t, it would not be worth living.
Action Kidney Cancer has been a huge support to Charlotte over the years, and I am very grateful that she found them. By nature, I am not a talker (and prefer to deal with things by pretending they aren’t happening), but Charlotte has found a lot of support through their Facebook site, which has been invaluable to her. Over the course of my treatment, she has often known about the different options available to us before we have spoken to my consultant, and this information has come directly via her involvement with the Action Kidney Cancer community.
I hope my story has shown that a diagnosis of advanced grade 4 kidney cancer does not just effect ‘older men’ and it does not mean you cannot enjoy life. Of course, there will be obstacles to deal with, but there are lots of different treatment options available and many more trials on going now. We don’t know what the future holds for me or my treatment options, but I am determined to make the most of it.