Our story. Firstly, my husband Ricky Casey – my very own hero. Also a Greater Manchester firefighter!

Unfortunately, our story doesn’t have the fairytale ending that one imagines when we meet the love of our lives. Ricky asked me to marry him in Spain, September 2017. I was the happiest girl ever. We were busy making wedding plans for 2019 and enjoying life, when in March 2018 Ricky started feeling unwell. It started with a dull ache in his left testicle. That didn’t seem to cause too much trouble at first, because it was sporadic. But after a couple of weeks the ache got stronger and was constant, along with a loss of appetite and pain in his stomach. Ricky’s first visit to the GP resulted in a course of antibiotics. The doctor seemed to think this was a completely common thing in men. While on antibiotics, Ricky’s testicle started to swell intermittently. He was feeling bloated all the time and he lost more weight.

He went back to the doctor feeling concerned, but the GP said he just needed to try a stronger antibiotic. The GP couldn’t feel anything wrong with his testicle and sent him away again with more tablets. Ricky wasn’t improving; in fact, he lost more weight, started to get an ache in his stomach and flank, lost his appetite, and the pain was waking him up in the night now.

On his third visit to the GP, we saw a different doctor who we pushed for an ultrasound scan. Eventually! But in the meantime, while we were waiting for the scan appointment, I had to take Ricky to A&E because his pain became unbearable. At the hospital, Ricky had his first set of blood tests. But again they sent us home with pain killers saying they thought it sounded like he had kidney stones. We were told to wait for the scan and he may pass the stones by then!

Ricky was really suffering with pain and trying to carry on. By the time Ricky had his first ultrasound scan it was May 2018 and we waited more than 2 weeks for the results! Ricky was still at work full time and struggling with the pain and suffering. I still don’t know how he did this. At the beginning of June, we went back to the doctors for the results of the ultrasound scan. The doctor decided to send us to the hospital for a chest X-ray and bloods because Ricky had developed a cough that wasn’t going away. Ricky was still taking antibiotics and his symptoms where getting worse, not better. Every time he ate he was uncomfortable and bloated. He had pain and aches in his testicle and stomach, sweats and he had an awful cough. The chest X-ray didn’t pick picked anything up at this point, but Ricky was due to have his first CT scan beginning of June.

At the end of June the results showed an enlarged kidney. By chance the CT scan picked up a shadow on the bottom of the lung. This needed further investigation. At the end of June, Ricky was working the moorland grass fires and these were his last days as an operational firefighter; he wasn’t fit for work anymore and unfortunately had to be pulled off the job. This devastated us both realising how poorly he was. In the meantime, we received a letter discharging Ricky from urology suggesting he may have lymphoma. This was our first diagnosis; from kidney stones or infection to now this. We were referred to a haematologist to then find out it wasn’t lymphoma and were passed over again.

Beginning of July, Ricky had a chest scan and an appointment at the respiratory department for the results at the end of July. Obviously, the doctors were still unsure about the diagnosis. So more bloods and further tests. The doctor decided to do an emergency lung bronchoscopy while we were at the hospital. They detected a large gland in his chest and smaller ones in his lungs and neck that showed up from his previous scans. They decided to take a biopsy from the lung since this was less invasive than a kidney biopsy. They first thought it was lymphoma because the kidney and neck masses appeared similar and we would need to be referred yet again to another department. Ricky then had another biopsy taken from his neck. At the end of July the doctors were still trying to diagnose Ricky’s condition. Ricky’s kidney function had dropped and the bronchoscopy detected another tumour. We were told that the doctors couldn’t decide which type of cancer this was (unknown primary cancer) and were struggling to come up with a treatment plan. They needed to run further tests and multidisciplinary team (MDT) meetings.

A couple of weeks after the MDT meetings and scans, they decided they thought the primary was in the kidney and had spread to the lungs. And from that meeting decided to take Ricky in for an emergency kidney biopsy the following morning. This was the beginning of August and Ricky was obviously still suffering and declining through the months, and was no further on with starting treatment and a diagnosis. They discharged him from hospital and on 15th August we had our first appointment at the Christie Hospital with hope that they had a plan of treatment and definite diagnosis. We were so frustrated and frightened by this and months had passed. The outcome of the appointment wasn’t what we were expecting. I can remember this day so clearly – to be told your husband had a rare form of kidney cancer called renal medullary carcinoma (RMC) that is linked to sickle cell disease and the doctors didn’t really know enough or see enough people with this cancer. Treatment is limited and he was already at stage 4. Also we were told that surgery wasn’t an option and the kidney couldn’t be be removed because of the size and complications this would cause. This was proving to be complicated across the board.

We had to wait until the end of August to start chemotherapy due to the results from ongoing tests that were needed for the treatment plan. This was obviously making us anxious because we wanted to get going with it; months were passing and Ricky was getting worse. When Ricky started treatment at the end of August, he had a very positive outcome to the first cycle of chemotherapy. All his tumours shrank by 60% and this type of cancer is supposedly chemo-resistant. So you can imagine that we were over the moon and we had hope.

We decided at this point to get married in December; the year before we were due to marry. We both felt the time was right and why wait? Ricky started his second round of chemotherapy, which showed no changes. Ricky started to pick up more and more infections and didn’t seem to be as well. After discussions with the doctor, the only option was to watch and wait and keep an eye on how Ricky was doing, which was devastating to hear. It was like everyone had given up on us. Alternatively, we could apply for a drug that had been recommended by the oncologist. This was a difficult process and took some time; time that we didn’t feel we had.

It was January 2019 and we were married. We decided to go on our honeymoon while waiting. This was something Ricky really wanted to do even though he had started to struggle a little bit more. On returning home we found we weren’t successful in our application for the drug recommended by the oncologist, which was refused on grounds of no evidence that the drug would work for Ricky. We could pay for the drug privately, and we were already raising money to fund the drug in case this was the outcome.

Ricky was struggling more and more with his breathing at this point and felt weak. He was taken into hospital with a chest infection and after further investigations diagnosed with a rare form of fungal pneumonia, which is very difficult to treat and which he may have had for some time. He went into hospital in March and declined from then on. The cancer was so aggressive and had been left untreated to grow and spread. Ricky’s lung collapsed and he became very poorly. But again, he was a true fighter and tried to remain positive throughout. Ricky and I sadly lost our fight on the 1st of May 2019.

As his wife, it was a 24/7 battle; no giving up and no negative thoughts or vibes, which Ricky 100% got on board with. We were a couple and giving up or losing was never an option. He was a hero, I was his rock! It was, and still is, a massive shock that we lost because as a couple it was never going to happen to us, never. Right until the very end, we were talking and making future plans daily. It’s so hard and difficult to see the person you plan to spend the rest of your life with change before your eyes and then pass away so suddenly, and I couldn’t do anything. I felt it was a constant push and battle to move things on quickly, and had to be a constant pest to doctors. Research took over my life. I practically gave up my work to look after Ricky and try to keep him healthy in mind and body and to be with him always. It is tough to keep yourself and the love of your life positive. This was a very quick and sudden change of life for us and it all happened so fast; 9 months in total. This is a massive thing to come to terms with for me and still feels unreal. And now suddenly alone, left without my husband. I honestly do feel early diagnosis is key. If the doctors had acted quicker and recognised the symptoms and signs of this disease, and if we had been able to have the drug, Ricky may have been with me today and had better quality of life and years. It has left me with feelings of anger and the need to help change things and help people in Ricky’s memory.

Thanks for taking time to read my story.
Nicola Casey

In November 2017, I’d just started a new job, and after a busy weekend working on a stand at the NEC I had some left side/groin pain – something I’d had earlier in the year but was passed off as ‘one of those things’ by my GP after a urine test. But this time it hurt like nothing I’d experienced, and pain killers were not touching it. My GP sent us to the day assessment unit at Northampton General Hospital for a scan – maybe kidney stones? A long and painful day and a CT scan revealed ‘something’ on my left kidney. A contrast scan the next day revealed a 7 cm tumour and a lot of affected lymph nodes. All over me. I was left in no doubt that this was very, very bad. Some of the registrars just didn’t seem to be able to relay this with any empathy – thank heavens for a practical consultant and good nursing staff!

I saw a renal surgeon fairly promptly. He made it very clear that this wasn’t curable, but thought that removing the kidney and tumour would give me the best outcome possible. It was then a nightmare of tests, delays and a biopsy (that proved pointless) before I was finally offered surgery in February 2018. Mr Potter is a great surgeon and managed a laparoscopic nephrectomy, even though it took six hours – not that I noticed but scary for my family.

The first couple of days were miserable afterwards but getting home on the third day was a big help. I did manage to return to my desk job (and short drive) after 4 weeks, which is a little unusual, but it does depend so much on your health and fitness. At the end of March my surgeon confirmed type 1 papillary RCC, PT3A, Fuhrman grade 2, and that this was a less common variant.

I saw the Head of Oncology at Northampton after another scan in April and was unimpressed! I was offered sunitinib (as there was progression on the scan in the lymph nodes) but with the clear impression he didn’t think it was likely to work. Trials were mentioned but they only seemed to know about PRISM which wasn’t available for papillary patients. I was promised by the Macmillan nurse that she’d find out about other trials, but you do learn very fast that if you don’t fit the clinical trial criteria, the NHS system can be distinctly unhelpful. She certainly was.

With some of my own research and some support from KCSN, I tracked down a relatively new TKI drug that looked promising for papillary RCC – savolitinib – and then found that there was one trial in the UK that incorporated it (along with MEDI4736, an immunotherapy drug) called CALYPSO. Armed with this information I got a quick referral from Northampton to Professor Patel at Nottingham.

I started the trial at the end of May and to date (August 2019) it has worked out amazingly for me. After a big initial reduction, things have been stable/slightly reducing on every 8-week scan. Side effects really haven’t been a problem (some itching and swollen extremities) and I worked all the way to the end of my contract without needing time off apart from the review/treatment every 4 weeks. Hats off to my employer on this count – my colleagues were incredibly supportive, and my managers allowed me all the time I needed for appointments.

It has been incredibly difficult emotionally for me and my family, and it has taken me quite a long time to accept what is happening and avoid bursting into tears when discussing any future event! I’m so grateful for the trial, which has allowed me to reach some equilibrium and enjoy life again. We’ve been able to retire gracefully and make some plans for the immediate future that are really exciting. I only wish more could have the opportunity – although my trail is still running (I will continue to be treated while I stay stable), it stopped recruiting papillary patients just after I started.

What I’ve learned is how important it is to work with a medical team you can trust and getting surgery/treatment underway as soon as you can. Initially, you really do have to make a nuisance of yourself, keep notes on everything that’s said or promised. Use the hospital PALS if you need to – don’t just accept what you are told if you don’t think it’s right. We’re so vulnerable and trusting at this point, but not every medic is a saint with a good memory!  Once you and your treatment team understand each other, things get so much better. I never thought I’d ever consider myself lucky a year ago, but I can assure you I do!

I follow the KCSN group on Facebook and contribute when I can – I’m particularly conscious of that initial hammer blow and try to make sure that the newly diagnosed know that there is hope and support as soon as they post. I know lots of others try to do this as well and I know from personal experience how much this means. As I have something of an academic background, I do keep tabs on what’s going on in the field and try to share whenever I think it is appropriate. Sometimes you do need to take a break though – it can be harmful to get upset by things you can’t control.

My final advice is to get a motorcycle. OK, maybe this is not for everybody, but, seriously, find something that allows you to disconnect from the world and focus on physically doing something for a while: playing music; reading; drawing; yoga; puzzles – stress makes everything so much worse. ‘Mindfulness’ is a posh word, but it works.

 

 

My name is Mark Heason. I’m now 60 and I was 59 when I found out I had kidney cancer. I’ve been married 35 years and we have two fantastic sons aged 29 and 26. I worked for Lloyds Bank for 35 years, predominantly as a commercial manager and after this I worked for 7 years supporting young adults with learning disabilities. I retired at 58 expecting a long and healthy retirement. I’ve always been sports mad and, as a result, very fit. At the time of my diagnosis I was playing golf twice a week, going to the gym regularly, running the local Parkrun and walking our spaniel. I’ve never smoked, drink moderately, have a good diet and I’m not overweight. As you can imagine, I did not consider myself a candidate for kidney cancer!

I found out I had kidney cancer in early May 2018. Right up to this point I was very active. I woke up on a Saturday morning with pain in my left side and a lump which had suddenly appeared. The following Tuesday I saw my GP and on the Thursday saw a urologist at my local hospital. I had an ultra sound scan and CT scan the same day and pretty much straight away they told me I had a 17cm cancerous tumour attached to my left kidney. On 25th May I had an open radical nephrectomy to remove the tumour and kidney, a 4.5 hour operation. Post op the urologist told me that when he started the op he discovered the tumour had ruptured and filled with a litre of blood. He had to drain this before he could remove it. Looking back now, it would have been even longer before I realised I had kidney cancer if the tumour hadn’t ruptured given I had no other symptoms.

Next time I saw the urologist he told me there were some remaining cancerous lymph nodes in my stomach and chest. These couldn’t be removed during the op, but would be treated with drugs. At this point I had a very positive mind set. I had an otherwise healthy body and I thought the drugs would get rid of the remaining cancer. It wasn’t until I met the oncologist for the first time in early July that the reality of my situation came crashing down on me. He told me, very matter of factly, that I had stage 4 papillary renal cell carcinoma, a rarer cancer. He would prescribe me drugs which would not cure me, but hold the cancer at bay for as long as possible. He was loathe to discuss prognosis, but I Googled this later and established it was poor. My friends at KCSN tell me not to believe Mr Google!

The oncologist put me on my first line of treatment, sunitinib. I did not question this and assumed it was the best course of action. It was about this time that my mindset really changed. I became more inquisitive and really researched everything that was happening to me. The NHS provide a great service, but there’s plenty more you can find out that they don’t tell you. I joined KCSN and this has been so helpful. They taught me to manage my care. I just wish I’d found the group earlier! As an example, on sunitinib you are put on a 4 weeks on, 2 weeks off regime. This is a tough drug, with multiple side effects. Through a colleague on KCSN, I discovered the 2 weeks on, 1 week off regime, much easier to cope with and hadn’t been offered by my oncologist. He did approve it, though. KCSN has also helped me to find solutions and alternatives for coping with side effects and it’s a safe environment for sharing emotional thoughts. Through somebody else on KCSN I became aware of the Calypso trial, for which papillary sufferers were initially eligible. By the time I finished on sunitinib in December, the doors to that trial were closed. If only my oncologist had advised and offered it to me I think it would have been a good route.

My next drug, which I started in early February 2019, was cabozantinib. I’m currently still on this. It’s not as harsh as sunitinib, but there are significant side effects. There are no breaks in treatment except for the odd one or two day break when toxin levels build too high. As at August 2019 I’m still on this drug, but my oncologist has dropped heavy hints that he will likely move me to my third and last line of treatment before long. In my time so far on drugs, I’ve had no further spread, but the existing cancer has continued to grow. There is a formula the oncologist uses to establish when a drug is not doing well enough and it’s time to try another one.

With papillary cancer being a non-clear cell cancer, which represents only around 20% of kidney cancer sufferers, it feels like there are far fewer options. The experts know far less. There aren’t as many lines of treatment and there is a distinct lack of clinical trials. It’s difficult not to feel discriminated against. For example, there are newer immunotherapy drugs now available to clear cell patients that aren’t available to non-clear cell. When you see the success these drugs are having, I wonder why we are not being given the same chance. Life is precious.

As I progress, I’ve physically felt my body change. I’ve lost weight and have far less energy or strength. Mentally it’s become harder to cope with the worry and uncertainty. My biggest worry is leaving behind my wife and two sons and the sadness this will cause. I’ve had counselling with a local hospice, which is good as I don’t want to be constantly talking about cancer with my family. It’s now also proving more difficult to fill my days. I’ve had to scale back previous activities as I get weaker. I read more and plan smaller bite size activities. Also many of my friends have rallied around me since diagnosis. They phone me or we go out for coffee/lunch. This has been fantastically helpful.
I haven’t set out to make my story a bleak account, but whichever way you look at it, it’s been the worst 15 months of my life. My future plans have changed forever. In fact it’s hard to plan ahead because of the uncertainty of how I will feel physically on any given day. I’ve learnt a lot about myself and I’m proud that I have at least tried to start each day with a positive mindset.

Hi, my name is Andy and I am 30 years old. I have been on my kidney cancer journey for 8 years now. I was diagnosed just a few weeks before my 22nd birthday. My symptoms started aged 21, in 2009. I was fairly 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 life-style, 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 16cm 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 day dream, 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 Urology Oncologist, who is still my consultant to this day. 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 a 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 axitnib 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 on 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 has since stabilised all of my tumours – knowing this makes the difficult side effects much more tolerable.

I have been lucky enough to be on this drug for 6 months now (and I am hoping for many more). 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 & 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 8 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 am currently working 4 days a week, with one of these days from home. 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, get two cats and create memories with friends and family.

My day-to-day life now consists of doing everything a normal 30-year-old married man would do. I work four days a week, sometimes five. 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 regularly go on holidays with Charlotte to fantastic destinations. 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, and my hair slowly turning white. My life is a constant battle, every day of the week, and this illness throws hurdles in the way of everything, but my view point 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.

KCSN 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 KCSN members.

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 with two holidays, three stag do’s and three weddings planned for 2018, it can’t be too bad.

 

My kidney cancer story starts by having no symptoms, but a wife who told me to go to the doctors. Mainly because she was getting a disturbed night’s sleep whilst I was peeing for England during the night. So, as all us men do, I duly obliged. I just happened to take a urine sample with me. The doctor did a quick test and announced I had blood in it, despite never seeing any. So they took blood to test for prostate problems.

A few weeks later I had a letter making an appointment for a camera to be inserted into a place where a camera should not go!  Every test was coming back normal, but 2 week further on they sent me for a CT scan, and this is where the story really begins.

The crushing news was that a 3 cm tumour was on my left kidney. The hospital decided that a biopsy would be difficult to get, so they said they would remove the tumour and then tell me if it was anything to worry about. They said the operation may be keyhole, but they may decide to take the whole thing out. At this point I said that if my son needed a kidney I would have donated one, so what’s the difference in taking one out. I have never really suffered with stress. Teaching the morally disabled in a pupil referral unit never worried me. And having confiscated guns, knives and drugs off pupils on a regular basis; why would this cause me a problem. Afterall, I would be safer in the theatre than on the corridors at work!

The day came (December 19th 2015). The pre-op room ended up like a comedy sketch: The epidural was given and I was told to swing my legs onto the trolley. That is easier said than done when you are paralysed from the waist down. Five hours later I woke up in the worst pain I have ever felt. Somehow my sciatic nerve had got stretched. The pain was unbearable, so plenty of morphine was given and the wonderful dreams began. Then to top it all my kidneys started to fail, so I had dialysis for 5 days until they had kick started back. Whilst all this was happening, I forgot about the effects of the operation because that was causing me no problems at all. So I spent 2 weeks in New Cross Hospital, Wolverhampton, and enjoyed Christmas in there as well.

Four weeks later ….. the hospital rang to say they wanted to see me. Nothing to worry about but they were concerned about my walking. So was I! To be fair because the zimmer frame was making dents in the carpet and my wife was on the verge of organising a new carpet. The doctor confirmed that it had been a grade 3 cancer, stage T1a, but he was happy they had good margins, except one spot that he described as a non-edge, which they had stitched to destroy the cells. We went home fairly happy, but knowing scans every 6 months were on the cards. My wife duly sent messages to all those who had been so supportive, and told them that the “autopsy” had shown I had had cancer. Obviously the flowers and deepest sympathy cards were very nice to receive. We then contacted everyone again to say the “biopsy” had shown cancer and that I was still alive. We laugh at my wife, not with her!

Six weeks after the operation, I have to say there was no pain or discomfort from the kidney surgery. Although, I could tell when I had not drunk enough fluid because I would get a feeling of slight sickness. I had no visible signs of puncture wounds either. Now I get the odd twinge, even after 2 years, but it’s nothing that I even need a pain killer for. It usually lasts a minute or two and it goes. I even fell over the garden wall after about 4 months and landed on my side, which was recorded on a video we shared with our KCSN patient support group! I would also add that I feel the same now as I have for years and years. Although, it does help when you retire and your time and days are your own. The dogs also get a good walk every day in the local woods.

I am now 2 years on from surgery with the “all clear”. My mind says to me; if the first scan is clear, why would the others be any different? It’s odd really, because of all the problems I had, my leg has caused me the most problems, like in a car park, as soon as someone parks next to me I cannot get easily in or out of the car. But I realise that is a very minor problem to have, having survived kidney cancer and an “autopsy”!

Kicking off with a bit of personal bio: 61 years old; accountant, retired; married 28 years; 3 kids; 2 grandkids (freshly minted); 2 bolshy dachshunds.

In 2010 I went in for an ultrasound scan to investigate a urinary tract infection (UTI), which refused to clear up after the normal antibiotics. Ultrasound identified 2 tumours on my left kidney, each being a few cm in length, so they had been there for a while. They were removed in June 2010, and the biopsy confirmed carcinoma. Choosing the Royal Free Hospital in Hampstead on recommendation, I was placed on a trial for sorafenib for 6 months, but couldn’t cope with the side effects (like most people as I was subsequently to learn).

In early 2011, a sharp-eyed radiologist spotted a fistula connecting my colon to the bladder, down which some faecal material had been travelling. Small wonder my UTI wouldn’t go away. An operation to solve that was carried out, and thereafter I was down to regular CT scanning for any sign of secondaries.

All was good until early 2013, when an ‘area of concern’ was identified in my left lung. Subsequent biopsy of material from there confirmed a metastasis, that autumn. In February 2014 I was put on sunitinib, an entry-level tyrosine kinase inhibitor (TKI). The dosage was 50mg given on a 6 week cycle of 4-on treatment, 2-off. I quickly switched to a 2-on, 1-off cycle as more manageable, but still found 50mg tough, especially as my weight fell away. After a couple of emergency hospitalisations in the autumn of that year, my oncologist switched me to 37.5mg, which she felt could still do the primary job of containing my tumours, but be more tolerable in terms of quality of life. I have been on that dose ever since, with no evidence of additional disease; a good run as sunitinib has a median success of 2 years.

Side effects for me are significant: fatigue; diarrhoea and other gastric issues; a sense of extreme cold; thyroid problems; raised blood pressure; itchy skin; general immunosuppression. All these are manageable in different ways. For example, I have learnt that my diarrhoea seems to relate to malabsorption of fat so, as well as loperamide, I manage my diet carefully. The cocktail of side-effects that each person experiences, is unique in both its make-up and severity, and can even vary from cycle to cycle for an individual. From talking to others, I seem to be getting off fairly lightly.

The emotional side of cancer is important too. I have decided to be honest with family and friends from the start, and they make allowances for my occasionally impaired functioning. As a member of KCSN I value immensely the support I get from the Facebook page that is the closed group for patients and their partners. I don’t feel as if I’m fighting cancer. That is being done by the drug companies that develop these new lines of defence, the groups like KCSN that lobby NICE to approve use in the NHS, and the oncologists who prescribe them. If anything I am just the battlefield, occasionally churned up, but also the beneficiary.

And what a benefit. Had this happened 15 years ago I would have been long dead. Since my diagnosis I have used up my bonus years doing all the things I put off during the working years:

My wife and I have travelled to New York where I have close family; to Venice, the most beautiful city on earth, I think; to Uganda where our youngest daughter works; and back to Paris where we had our honeymoon decades ago. I went to South Africa on rugby tour with my beloved Club. Additionally I took over as President of my Club for a three year term, soon to finish. Recently we welcomed into the world our first two grandchildren, something that I might never have been alive to see. Life is busy and good.

My name is Neil, born January 1968, 49 going on 50, and living with my husband. We’ve been together over 19 years, and have a dog, Jay. We got him shortly after my diagnosis to help get me through recovery.

My story starts in 2014. One morning in late April, I went to the toilet and spotted my urine was pale pink. A visit to A&E and 2 CT scans later an 8.5cm tumour was discovered on my right kidney. Goodness knows how long that had been growing unchecked, but until that day I’d had no symptoms, I felt perfectly fine. I took the news with equanimity, very calmly. I was thinking: OK, take it out, sew me up and I can get back to normal nice and quickly. With hindsight that was far too blasé.

The right kidney was removed in June. The cancer was an aggressive one, they didn’t give me any numbers though. I was scanned 3 monthly. The 4th scan showed new bits, spread from the kidney, in my lung and next to my windpipe. I started on chemo and the new ones cleared up in a few months.

March 2016, I had a seizure; collapsed in the living room, and don’t remember it at all till I woke in A&E. Another CT scan and MRI and a lesion was found on my brain. Prescribed steroids and an anti-seizure medication, then had an operation to remove the lesion followed by something called the GammaKnife; concentrated radiotherapy. That seemed to have worked. Assuming the seizure had been a one off, the medication was stopped. Biggest issue; having a seizure meant I had to surrender my driving licence. No driving or pursuing my hobby; riding my motorbike.

July 2016, I was given the all clear, nothing was showing on the latest CT scan.

Six weeks later another scan showed multiple lesions on my brain. They couldn’t operate on that many so put me on a different anti-seizure medication. Then I had 10 consecutive days of full head radiotherapy to kill off those lesions. Possible issues with this; within 2 years I could start losing my memory. Not a good choice but it was either that or let the lesions take me out even sooner.

December 2016, I was given the all clear again. Still nothing going on in my lung and the lesions were dormant.

February 2017, I found a lump on my buttock; turned out to be an abscess. No one could tell me the cause, naturally enough I assumed it was cancer related. It was surgically drained then I had weeks seeing a district nurse to keep changing the dressing. Finally it healed, but it did take a long time. They took me off chemo for a while as it was interfering with the healing process.

June 2017, I had a second seizure; again I don’t remember it happening at all. I was watching the MotoGP, then the next thing I remember is waking up in hospital. Scans showed nothing new so no idea what had caused it. Was put on anti-seizure medicine again and so far, touch wood, that’s done its job. I have an appointment at the epilepsy clinic in December; no idea what they’re going to do with me so should be interesting.

Despite showing all clear I’m still on a low dose of the chemo to prevent anything resuming. Fingers crossed that continues to do the job.

During the past 3 ½ years my emotions have been all over the place. Initial shock, positive when I had almost a year with nothing showing, upset when the nodules were found, happy when the chemo beat them, upset with the first seizure, the lesion and loss of my driving licence, happy again when the brain surgery went well, depressed when more lesions were found then the radiotherapy, happy to find out the lesions were dormant, or dead I suppose. Throughout all this, I refer to it as my adventures, I have generally stayed pretty positive, always on the outside and pretty often on the inside. I am a great believer in keeping a Positive Mental Attitude. It’s hard sometimes but it’s either that or sit in a corner and cry, which to me would be a complete waste of whatever time I have left. I have been paranoid, worrying that every ache, pain, twitch might be cancer related.

It’s fair to say my own strength on its own could never have carried me through the last 3½ years. The support of my Husband, family, friends and my dog all added substantially to my positivity. My fellow members of the KCSN have been awesome. Being able to speak to people who have or are going through a similar thing, or know someone who is, is enormously beneficial. I needed to be reminded it’s not just me.

I do accept that my time is likely limited but equally I’m still determined to get my telegram from whoever our Monarch is in 2068.

I have had plenty of side effects from the medication I’ve been prescribed at various times. The chemo has mainly caused tiredness; sometimes I was sleeping 16 hours a day with no inclination to do anything at all. Have had stomach issues, mainly diarrhoea, which meant having another tablet to settle that down. At one point I was vomiting after every meal, so another tablet was prescribed to be taken an hour before eating which did the job.

Here and now, November 2017, I’m feeling OK. Am on 3 pills in the morning, axitinib, the chemo; lamotrigine, the anti-seizure, and dexamethasone, to protect my stomach from the others. In the afternoon I just have the chemo and anti-seizure medicine. I wasn’t drinking enough water, I upped that and my energy came back.

At my last Oncology appointment the Dr thought I might be anaemic, another one that can make you tired. I haven’t heard from him since which means I’m not. My stomach and toilet visits have returned to normal. I’m currently waiting for work to write to my Oncologist to confirm I can go back. From a keeping me sane point of view I definitely need that.

If you’d like to read about my adventures in more detail I do write a semi-regular blog. You can find it here… neilfaraday.wordpress.com

I was born in mining village in South Yorkshire early in the 1960s. I moved to Sheffield in the 1980s, got married, had kids, had a good job at British Steel.

Eventually, I got divorced and met Marie, and we were just starting to enjoy life. No children at home, no mortgage, lots of holidays, and we both had quite good jobs.

Bringing forward the story to the end of 2013. I was now 52. I banged my knee on the corner of the coffee table and fell to the floor in agony. Marie, sympathetic as ever; “Get up you drama queen, you hardly touched it.”  “No honest babe it really hurts”.  Over the next few weeks and months the knee got worse, but being a stubborn man I insisted I didn’t need the doctor, until it affected my walking.

I went to see my GP in June 2014 and he suspected cartilage issues, as I had played football for many years. I was given anti-inflammatories. After a few weeks there was no major improvement, so I went back to the GP and he referred me to Rotherham hospital. I was given an X-ray. In fact, I was given a quite few X-rays and I thought this was quite strange.

On getting home (same day) from the hospital, the phone rang – it was my GP; “Please can you attend the surgery now to discuss your results”. I though this was strange. Anyway, the GP informed us that it’s probably a giant cell tumour in the knee (a non-cancerous tumour that develops in bones). “A new knee joint will be fitted and you’ll be good to go. We’ll just send you to Birmingham for a biopsy to be sure.” On the 12th August 2014 I had my knee drilled for a biopsy. Two weeks later I got the results: renal cell carcinoma (RCC), stage 4. Further scans revealed my left kidney had a large tumour.

Now at this point I did not have clue what this meant, and bear in mind I had had no symptoms whatsoever other than my knee. Prior to this I have been healthy all my life. I suspected the doctors would fit a new knee joint, remove the bad kidney, and I could get back to work and carry on as normal…….NO.

I was transferred to the urology department in Rotherham hospital. The surgeon was very busy and couldn’t fit me in as he had a lot of other cancer cases, so he tried to get Birmingham to carry out the knee operation first. This went on and on for weeks, with the hospitals arguing about time of their surgeries. Eventually, I had a full nephrectomy of the left kidney in October 2014. Post op, while still on painkillers, I was introduced to Jayne, a palliative care nurse. This was a shock – am I dying? Why hadn’t I been told this? Anyway, I sobered up from the morphine quickly. We arranged a meeting for the following day with Marie and a doctor. They explained my 5-year survival rate was 8% – a shock like no other, I can tell you, plus I still had the more traumatic op to come.

The disease in my knee had now spread to my femur and shin bone. On 6th December the same year, I had a distal femoral replacement. This involved sawing my femur and shin bone, andinserting titanium rods and knee. These were drilled to my lower leg and hip (six million dollar man …… “we can rebuild him”).

Now, I can’t remember the kidney op being that painful, but boy, the leg op was. Especially as I had to learn how to walk, climb up and down stairs, get in and out of the bath etc.

Recovery was relatively quick – I heal well, apparently. Within three months I was back at work (office-based now) doing two and then three days a week. I was then transferred to an oncologist at Weston Park Cancer Hospital in Sheffield. I have CT scans every 12 weeks or so, and perhaps an annual or 18-month scan checking my bones.

Moving forward to November 2015. A CT scan showed metastases in my lungs and it was time to start targeted therapy with pazopanib (a tyrosine kinase inhibitor, TKI).

All was OK for a week. Then everything tasted like wood – food was horrible and I had to force myself to eat. I went for a haircut (now I have very short hair anyway) and I terrified the poor hairdresser – as she used the shears all my dark hair came off and left brilliant white roots – she was mortified! By week four, my skin was going yellow and I felt ill, really ill. Now again, me being me, I had expected to feel ill – its not good stuff! I didn’t know how ill you’re supposed to be before you say anything, so I carried on. Anyway, my district nurse called just to see how I was doing. She went mad! I explained I didn’t know any better, but she failed to see the funny side. So off to hospital overnight, tests for all sorts and I was put on a drip. No more pazopanib (Votrient).

So in January 2016 I started sunitinib (Sutent) – first 50mg, then 37.5mg, then 25mg. I coped quite well, to be honest. Results showed some shrinkage and I was stable for a year. Then in April 2017 my scan results were worse, so back up to 37.5mg then 50mg to try the maximum dose of first-line treatment prior to starting second-line treatment. My latest scan results were still not good, so I was supposed to start second-line treatment with axitinib (Inlyta); however, because of my low white blood count, I was given a month off treatment.

August 2017 and I’m feeling absolutely fantastic – no drugs for a month, the longest break since I started the treatment. I know, however, that I need to start treatment soon. Then out of the blue I had a phone call from my oncologist; “We re-checked your scan to get baseline measurements of your tumour sizes before starting second-line treatment”. It turns out the results were wrong. The increase in dose in sunitinib had shrunk the tumours a little, so I’m now carrying on at 37.5mg dosage until my next scan at least.

Overall its been a emotional journey, not just for me, but for Marie too. I couldn’t have got through it all without her constant encouragement and support. Thank you Marie.

So now I have a “new” life. Still similar to the old one, but not the same. I left the steel industry after many years and now work two days a week running a small warehouse.

I walk the dog, go fishing, ride and build motorbikes, and holiday as often as possible.

Its amazing how far you can come and what we can put up with.

Finally I would like to add a few words about the KCSN and the people who run it. Though only a “new boy” on here, I’ve been made welcome and the depth of knowledge and material I’ve found on here is greater than any other site I’ve come across, and it’s constantly being updated. The administrators are passionate about our fight with kidney cancer and very knowledgeable in their own right.

Plus it’s a great place for us all to talk about our problems and help each other, since we joined the elite club that is kidney cancer. Because if you (or a loved one) haven’t got it, you won’t understand.

Thank you for reading my story, good luck to you all. Stay strong.

I was diagnosed August 6th 2013 with renal cell carcinoma (RCC) at age 59, which came as a total shock to me. The end of 2012 and 2013 was one thing after another for me. After suffering from tachycardia for years and having seen many cardiologists, I was rushed into hospital with a heart rate of over 203 bpm after seeing a cardiologist and feeling unwell. My blood pressure, although on medication for years, had been extremely high on a few occasions, and it was decided I needed what they called an atrial fibrillation (AF) catheter ablation. I then had a knee operation in January 2013, and was rushed into hospital again in April 2013 with another AF episode and again heart rate over 203 bpm. I had what they called a cryoablation in the London Independent in July 2013.

Three weeks later I was still feeling very ill and felt sick, off food and weak, so on Monday 5th August, the day I was due back to work, I called the hospital (I was lucky enough to have private health cover) and spoke to my surgeon who has looked after me for years with irritable bowel syndrome and diverticular disease; he said come straight up. How lucky I was; he did abdominal and pelvic CT scans and bloods straight away. I was so lucky to get booked straight in. He said to come back tomorrow for results. August 6th I asked my husband to come with me for some reason; normally I would go on my own! My surgeon then said, “Your bloods are all fine; however …..!!” The rest is history; I was diagnosed with RCC and saw an amazing urologist the next day. As I was on warfarin I had to wait until 31st August for a partial right open nephrectomy, and they removed a rib as well, which I was told was necessary to get to the kidney.

I was extremely lucky to get caught so early, and also very lucky to have contacted Julia Black at the KCSN before the operation. Julia put me in touch with Rose Woodward who really helped me a lot. It took me a long time physically and mentally to recover. I had to have a further colonoscopy and gastroscopy under a general anaesthetic in December 2013, just to finish the year off (lol) and got told I had Barrett’s oesophagus, so I have to be monitored for that. For me looking back, my blood pressure and racing heart were all signs for me personally, and how my body was reacting to the cancer. Also, unfortunately, cancer is a genetic issue in my family. I lost my Mum with bladder cancer, my uncle with prostate cancer, and my cousin aged 58 with kidney cancer (bless him) a couple of weeks ago, diagnosed very late stage. I feel very blessed and although 2013 was horrendous, out of it came luck and love with a 4th new grandchild, whom I am very lucky to see starting school this year.

I continue to have my scans and for me I think I will continue to be monitored, even if I have to pay for them I think it’s so important. Kidney Cancer Support Network is an amazing organisation and has helped me enormously.

My name is Ida and I’m currently a stay-at-home mum to my two children, and I live in Leeds. My story begins in December 2013. I had just turned 39 when I started to experience troubling bladder symptoms. I often had the sensation that my bladder was uncomfortably full, but I was unable to empty it. I also had other symptoms, such as feeling exhausted, having moments of weakness, feeling as if I was coming down with flu, aching limbs and dizzy spells. I started to feel very anxious and had a strong sense that something was seriously wrong. I began to wonder if I had a disease such as MS, and went to the doctor to describe my symptoms. He dismissed most of them as anxiety, but I was referred to a urogynaecologist at a local hospital to investigate the urine retention. She felt that damage caused by childbirth could be responsible for my bladder symptoms, but ordered an ultrasound scan to make sure there were no ovarian cysts.

I had the scan a week or so later. The radiographer spent about 20 minutes looking around the bladder area and conducting tests. The atmosphere was light-hearted and we chatted away as he did the scan At the end he said he’d just have a quick look at the kidneys. The right kidney was fine he said as he moved on to the left kidney. At this point the atmosphere changed. He spent a long time looking at the kidney. He asked the nurse to get hold of my consultant urgently. I started to feel worried. All he would tell me at the end of the scan was that there was an abnormality and he would arrange for me to have a CT scan the next morning. I had an appointment booked with another urogynaecologist later that day to perform further tests on my bladder. At the end of the tests he said, “So, as you know, we’ve found a shadow on your kidney. We don’t know what it is, but we’ll treat it as cancer and refer you to the Urology Cancer Centre at St. James’s hospital in Leeds.” My head was swimming. I couldn’t understand why they were treating it as cancer. Surely I couldn’t have cancer? I was a healthy 39 year-old with no family history of this cancer. It didn’t make sense. The doctor told me how lucky it was that it had been caught early before I started having any of the classic kidney cancer symptoms, such as blood in the urine. He finished by saying; “If I was you, I would walk out of this room feeling like I’d won the lottery.” I realise he was trying to help but, unsurprisingly, I didn’t feel like a lottery winner. I left the room shaking and broke down in tears. A kind nurse rushed over, made me a cup of tea and hugged me as I sobbed.

An appointment was made for the following week with an urologist at the Urology Cancer Centre. I spent the days prior to this appointment feeling dazed, frightened and confused. I still clung on to the hope that there had been some terrible mistake. I read that kidney cancer was extremely rare in people (especially women) under 45, so I told myself I must have a benign tumour.

I met the urologist who told me I had a 4cm tumour on the kidney. Because of it’s central location they would have to remove the whole kidney. I asked of it was malignant and he said there was a 95% chance it was. This is when the reality of my situation hit me. I felt shocked and scared. I feared death but the thought of leaving my young children without a mother was what horrified me more than anything. The urologist said, “I want to give you a hefty reassurance that we can cure you with surgery alone”. It was these words that provided me with great comfort in the months ahead, and still do.

I was passed over to a cancer specialist nurse who took my husband and I to a private room. She was wonderful. She sat with us for about an hour while I cried continuously and asked questions. She was very knowledgeable and answered all the questions fully and calmly. She was a huge support to me over the next few months.

My surgery took place a month later and went smoothly. I recovered well physically. I found the most difficult part was waiting for the pathology report. I waited about 3 weeks and then was told I was stage t1a (the earliest stage) and grade 3 (a more aggressive cancer). I was considered low risk for recurrence.

For several weeks I felt elated. It’s like I was walking on air the whole time. This amazing feeling of euphoria and relief. Then suddenly the fear returned. I began to worry about the fact it was grade 3. I hadn’t Googled the cancer up to that point, but once I started I couldn’t stop. I became obsessed and would spend hours each day Googling grade 3 kidney cancer. This lasted weeks and had a very negative effect on my life and my interactions with my family. One day I realised I had to stop. No amount of Googling would tell me what would happen to me. My future was unknown. Maybe I would live to 100, maybe my cancer would return and I would die in a few years, maybe I’d get hit by a bus tomorrow. All I had was today and I was determined to enjoy each precious day with my family.

Groups such as the UK Kidney Cancer Support Network have offered me comfort and support whenever I’ve felt scared. Being able to talk to others who understand your fear is invaluable.

Life has changed for ever. I’m very thankful to have remained cancer free for three years but I shall always live with the fear of the cancer returning. I feel most people don’t understand this lingering fear. Every cough, every headache, every ache and pain terrifies me. But life has changed in a positive way too. I truly appreciate each moment now. I have a new awareness of how precious and fleeting life really is and a permanent sense of joy just to be alive. I hope I am now a kinder and more patient person. For this I shall be eternally grateful to the cancer.

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