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.

Jud 2I found out I had kidney cancer after having an accident on my then trout fishery. We were working on the lake and the boat we were using crashed into my ribs. After a couple of days I went to the hospital as I knew that I had at least a couple of cracked ribs, and wanted to have an X-ray to make sure there was no real damaged. X-ray results showed that I had cracked four ribs and in time they would heal.

About 10 days after having the X-ray, my wife got a call from the hospital asking for me to go back and have another X-ray as they had spotted something they wanted to re-check: I knew that something was not right and was very concerned what it could be.

Before I go on a little bit about myself

For more years than I want to remember, ever since I left school I have always worked very hard: 16 years in the Army, worked as a driller for many years in appalling weather conditions and always worked in most cases 7 days a week, smoked like a trooper and drank like a fish. My diet was crap and I weighed 15 stone 4lb, but was very active.

My passion was fishing, from a small boy and still today. My hobby became my living and some 20 years ago I opened a trout fishery with the help of my wife, Claire, and a service centre for repairing fishing reels. We had 7 staff and we all worked very hard.Jud 1

Back to the X-ray; I had the X-ray done and was told to wait in the room, 20 mins later a consultant came in to see me and give me the results. You could hear a pin fall as he told me I had cancer. I would have to go for a scan. I went home and told Claire, my wife, what I had been told and I can admit I cried my eyes out as I said why me! Is my life over, how long will I live, what the hell am I going to do? From the outset of this journey, my wife, Claire, has been my rock, and at times had to push me that you just cannot give up.

On the 3rd of April 2013 I was diagnosed with kidney cancer and was told that it was not all bad news. This baffled me a little as I said, what is the good news then? The kidney was the primary sauce of the cancer so we take out the kidney and with treatment we can sort out the metastases on the lung.

So on the 21st of May 2013 the kidney was removed, 10 days in hospital and the day I came out of hospital I went back to work. But I could not do any physical work, but I knew if I was back at work I would get better quicker as I felt more comfortable being able to help in some way. So working on my computer, I was able to be useful. My staff and Claire were great and kept everything running smoothly, and without them I am not sure what I would have done.

Singleton hospital

I was told that I would be under Professor Wagstaff at Singleton Hospital. At the time this name did not mean anything to me. But as I started my first lot of treatment his name will stop with me for evermore for his dedication to all his patients. All Professor Wagstaff’s oncologists and registrars are the best in the NHS.

Treatment

The first treatment I was given was pazopanib (short name paz) in September 2013, and for a while showed good results, but by mid-2015 paz stopped working and I would have to come off it. I had a lot of bad side effects and all food tasted like metal. I lost count how much Claire spent on food to try and get me to eat and Claire would go mad at me if I would not eat. Although Claire was right, what do you do when you cannot face food? And I did try many things, but with perseverance Claire found a way round for me to eat some types of food, but I now had to come off the paz.

After a few weeks off paz, I went on to a drug called axitinib, in September 2015. This one was the worst one for me, the side effects were awful for me. Now on axitinib I wanted to eat, but one of the side effects was a very sore mouth and I found it very difficult to eat and must admit I did not eat a lot, but it was a little better than paz. The other problem I had was the axitinib caused very sore feet and also created big blisters on my feet so I could hardly walk. Even a chiropodist could not do a lot for me, but by padding the blisters I was able to walk a little better. The scans were showing reasonable results and my oncologist was happy with the ways things were going.

But sadly this was not to be, as for some reason I caught some sort of infection. I felt very ill, did not want to do anything, felt very weak. Christmas was a wash-out, not just for me but also the family. I could not eat and did not want to eat. All I wanted to do was sleep, and felt very sorry for myself. Once again this is where the strength of my wife, Claire, came in, doing what she knows best was to keep nagging me to eat. Claire said I do not want to see you die and I will not let it happen. This hit me more than anything. Claire has never been so upset and I knew I had to buck up. I did buck up a little bit but did not feel right. My daughter Louise, who is a Doctor, took me to see my GP and gave me some tablets to take, but by end of January I was still not right. Then on the morning of the 3rd of February I had got up as normal and that’s the last thing I remember.

My wife had our daughter to call up to our house and straight away Louise called for an ambulance. Once in hospital they took me in to ICU. After a while, doctors told Claire that I was very poorly and advised her that I was so bad that I may not make it through the night. With strong antibiotics being pumped into me there was some light at the end of the tunnel. 5 days later they moved me out of ICU to the cancer ward as I slowly recovered from severe sepsis. The doctors and the ICU nurses were incredible; they got me through this and all I had to do was get well. My weight had dropped to below 10 stone, so there was a lot to do.

While recovering, Professor Wagstaff told me that I would not be going back on axitinib but a new drug. The name of the drug is nivolumab, which I started early April under the Early Access to Medicines (EAMS) programme. I have had 28 infusions to date. I have had 4 scans with good results. The side effects are very little and certainly not worth complaining about at this stage. Nivolumab has given me my life back and also to my family; what more could anyone ask for.

The one thing I have learnt is once you have been told that you have cancer you are not the only one affected. The whole family has to live with this as well. Wife/husband can go through hell, but love and being positive can get you through any obstacle that is put in your way.

My wife, Claire, gave me the strength to get through this and, yes, there still a long way to go. I do now have a life.

I would like to sincerely thank Rose and the KCSN who helped Claire through the very dark day of the 3rd of February 2016, and showed her that a promising new treatment would help me.

Today, a year later at the age of 67, I weight 13 stone and I am back at work full time. I go fishing every Saturday and Sunday and I am loving life. I know there is still a long way to go, but I also know that with love and good people around you, you can do anything you put your mind to.

 

My friends call me Dick; I am 61 and married to Babs, my high school girlfriend. We have two sons. Our eldest son, Alistair, died suddenly 22 years ago in an accident in Africa. James our youngest is happily married, with a baby daughter. I am retired now after a career as a landscape architect and tree consultant.

One night 21 years ago, after cleaning my teeth, I found I couldn’t pee. It wasn’t painful, I just couldn’t pee. I went and made a cup of tea and tried again. Now I was concerned as my bladder felt swollen. I called the out of hours service and spoke to a doctor who asked me to drive to the next town to see him. He was sceptical and urged me to go and produce something in a basin. I strained and eventually managed to force out some blood and tissue. He looked serious and told me to drive straight to the local general hospital in a nearby city.

I was “in retention”. Fortunately for me the drive and the discomfort of my distended bladder made me force the coagulated blood and tissue out when I got to the ward. Relief at last, but they kept me in and I had an anxious sleepless night. Over the next six weeks, it was established I had a very large tumour in my right kidney that was into the renal vein, but had outgrown it’s blood supply and started to breakdown and decay. This was the tissue that had blocked my bladder outlet. I was told the disease was slow growing and I might have had it for 5 years. The diseased kidney was removed 6 weeks later after determined intervention by our angry GPs. The unnecessary delay was hard to live with and inevitably adversely affects the procedure and the outcome.

I had a rooftop incision across the front of my tummy, roughly following the bottom of my rib cage. Unusual for a kidney removal, but this gave the best access in case I was riddled with disease. I recovered quickly and was soon up and fit again after about 6 weeks. I was told it was a dangerous disease with a 50% 5-year survival, but that they were sure they had the entire tumour.

I got on with life, but we were still grieving for our eldest son, who had died the previous year while we were on holiday in Malawi in a bathing accident caused by a sudden change of wind. We were all there, and any or all of us might have perished. I was still feeling grief, guilt, remorse, anger, despair etc. We were a fit family, and all good swimmers, but the conditions had made our ability irrelevant. I had been training hard after the accident and not looking after myself well. At times I wished I had died so he wouldn’t be alone. It seemed wrong to have survived. I am telling you this so you can understand I had a negative mindset. This was the theme playing through me day and night.

Two years later, during a routine check of my lymph nodes in the shower, I felt a pea-sized lump in my armpit. I had a biopsy two weeks later; by then it was a broad bean. After another fortnight a walnut was removed that turned out to be a metastasis, the wound reopened and another op was needed to get the disease left behind. After a CT I was put onto interferon A, injected subcutaneously 3 times a week, which I took for two years. I kept fit for the first 18 months, but I got a campylobacter infection and lost a lot of weight and condition before it was diagnosed. I never really recovered fitness and became steadily weaker. Two lessons here. First, always maintain your general fitness, it will help you to cope with treatment. Second, and this is only for the desperate. I couldn’t inject myself to begin with; in desperation one day I did it through my clean white shirt, which was somehow easier.

I had had no guidance on how to cope with the side effects, and a GP summoned by my wife found me delirious in bed, swathed in blankets, trying to sweat out the fever caused by the drug. They were very amused, of course, and told me to cool myself and take paracetamol. With advice from another patient, I learnt to inject the interferon at noon and start taking paracetamol and would be fine for the next four hours. I would be feverish by 8 but could sit in front of TV and by 10 I would start coming down and be able to sleep. Patients and nurses are usually the most helpful with coping with treatment.

After two years of interferon a CT was negative and I stopped with relief and became fit and strong again. Three years later a CT showed another tumour in my remaining kidney. The lower lobe of the kidney was removed and the tumour was another primary.

Two years later another CT showed two more tumours in the remaining piece of kidney which was removed, and these also turned out to be primaries. I was now living on haemodialysis, which was a bit of a shock, and I suddenly felt very poorly. It is just about enough to keep you alive, but you are pretty sick.

I was referred to a geneticist and investigations found no known syndrome, but my multiple primaries were unusual.

You will have gathered by now that I think mindset is very important. Whatever treatment you are having love your life and nurture your body. Exercise, but not too hard. Eat well, but in moderation. Rest when you need to and try to get good sleep. Avoid stress – it has a powerful depressing effect on your immune system. I believe in God and often just pass the worries over, it’s a great relief. I practice yoga, meditate occasionally, and use mindfulness and guided imagery. But I don’t beat myself up about forgetting to practice, that after all is self defeating. I know when I need it. Give your body the best chance to restore your health. Your immune system has got you this far and dealt with millions of cancerous rogue cells on the way, it is still working for you.

After four years on haemodialysis with clear CTs, I had a transplant, but unfortunately, the high dose immune-suppression needed in the first few months let previously invisible metastases in my chest and belly grow uncontrolled by any immune function. This was discovered belatedly by CT scans done after 3 years; I had dropped off the oncologist’s radar. What can this tell us? Be proactive, manage your care rigorously yourself and stay well informed at every stage. No-one will be as thorough as you.

What next? Average life expectancy on haemodialysis is only 5 years, and your body declines fast as the kidneys do a lot more than the basic functions provided by haemodialysis. Haemodialysis has given me four good years. I travelled throughout Europe and went to the USA, though I wouldn’t recommend that. I rode to Italy over the Alps on dirt tracks, and skied. I did an olympic distance triathlon, slowly, but finished. I tell you this not to brag, but so you know it need not be too bad. I saw our son grow up, go to university, be commissioned as an Officer and give us a grandaughter.

Recently I have done a couple of years on sunitinib followed by a couple more on pazopanib. I switched to axitinib after a tumour was found and removed from my middle bowel. I still have inoperable tumours in my chest and abdomen, whose growth is restrained by the angiogenic drugs. The next step is not clear yet, but I do know I have a great life and want to live it as long as I can so I will keep going. Personally I don’t feel comfortable being called a cancer survivor. It suggests someone desperately clinging on, and whilst there have been bad times I have had 21 great years since diagnosis. I prefer to think I have lived well with cancer. I don’t care too much what others think of me, except those I love. This is my life and not to live it to the full is a waste.

The plan now is not to go gracefully, but to eventually and belatedly skid sideways into the grave, thanking God for a great ride. I am trying to wear out my toys and get all the mileage I can from this brilliant tough body. There are undoubtedly some problems, but living with them is a lot better than the alternative, and I am truly grateful for the chance to do so. I try to remember you get back what you give, so I try to love and give happiness to others, selfish I know, but try to forgive me I’m desperate. I am often grumpy and hard to live with. I conveniently blame the drugs; we patients are lucky there aren’t we, healthy folk can’t use our trump card excuse. Live life as if you don’t know how long you have (no-one knows anyway) and your cancer will be a gift. You will get more from your life than most people who are busy striving for more bedrooms etc.

sarahSarah was diagnosed with a rare type of kidney cancer (papillary renal cell carcinoma) in 2009 at the age of 32. She very quickly joined the Kidney Cancer Support Network website forum to connect with other patients and find out as much as possible about kidney cancer. Later on and recognising the power of Facebook, Sarah had the idea to provide a confidential area on Facebook where kidney cancer patients could share their knowledge and experiences with each other in a safe and private group away from the public eye. So Sarah started the ‘UK Kidney Cancer Support Network’ Facebook page to compliment the KCSN Resources Forum and the page was later expanded to include carers and families of people affected kidney cancer.

Sadly Sarah died in July 2014 having fought an inspirational & courageous battle for five years. She fought with determination, not just to beat her own disease but to help others going through a similar battle. Above all Sarah knew how important it was for patients to talk to each other; to share their fears and their successes, their highs and their lows, and have someone to turn to who truly understood how she felt. This is Sarah’s story.

Sarah was walking home from her daughter’s school when she felt a pain in her back and a desperate need to wee. She thought she had UTI and made a dash for the toilet as soon as she arrived home; her urine was red wine in colour. She was initially prescribed antibiotics for a suspected UTI, after three weeks a GP examined her and found a tennis ball size lump on her left side.

She had a radical nephrectomy in April 2009 which revealed a 10x11cm tumour and she was told she was a grade 3, stage 3 and given the awful news that this carried a high risk of recurrence. Sarah joined a clinical trial called SORCE (Sorafenib v placebo) to assess if sorafenib could help prevent a recurrence in higher risk patients. She had severe side effects while on the trial but still managed her home and looked after her 3 children, determined her disease would not affect her children’s home life.

One year later in June 2010, a routine CT showed the disease had spread to her liver and there was three further tumours in her remaining kidney. She was now a stage 4 patient with bi-lateral disease and had to come off the trial. Following further major surgery (liver resection and gallbladder removed) plus RFA on the tumours in the remaining kidney, it was confirmed that her kidney cancer was ‘papillary type with a mixture of clear cell’ and she was given the terrible news that it was considered to be incurable.

Still fighting, in April 2011 she started on sunitinib which worked for five months but eventually had more disease progression. Her team at Southampton Hospital agreed to do RFA but just over 5 months later more progression was seen and she started on everolimus (10mg daily). Sadly everolimus did not work either and she was referred to the Royal Marsden Hospital in London to see if there were any clinical trials available because she had run out of NHS funded treatment options.

In June 2012 she started a phase 1 clinical trial (drug called AZD2014). Sarah said …..

“I cannot speak highly enough of the drug development unit at the Marsden, through those weeks they became my second family, I went to hell & back at that time, away from home all the time, constantly in hospital, and my health deteriorated. Phase 1 trials are no easy undertaking….you cannot prepare yourself enough for what is involved”

Sarah endured long spells away from home which was so difficult for her being away from her children, sadly the trial did not work so she had to come off it. She was devastated and was also told axitinib could not be prescribed on compassionate grounds, something she had thought of as a possible back-up. Fortunately her Oncologist in Southampton appealed to allow Sarah to re-challenge the drug sunitinib through the Cancer Drugs Fund (CDF), this was declined, but in the interim axitinib had became available via the CDF and thankfully her next application was approved. This was wonderful news and she started on axitinib. Although axitinib held most of the disease at bay, one large tumour in her remaining kidney was growing. Surgery to remove the existing kidney was considered but not pursued as it meant Sarah would have had to be off axitinib for 8-12 weeks and this may have allowed the disease to progress further. And so Sarah agreed with her medical team to stay on axitinib as it was certainly slowing things down. They increased the dose (7mg x 2 daily) in the hope of saturating the tumour. Sarah was very brave as always and she insisted the side effects were manageable.

Sadly in May 2014 Sarah felt quite unwell and received the devastating news her remaining kidney was starting to struggle. Her medical team discussed the possibility of dialysis with her but whilst in hospital she was told this option was no longer viable. After feeling very unwell, the decision was taken to restart axitinib at a lower dose as a form of pain management and Sarah returned home feeling more at ease but knowing that when things deteriorated next time the Hospice was where she wanted to be.

Sarah finally succumbed to kidney cancer in July 2014. Her children and family were the most important things in her life and she always said she did not want her battle with kidney cancer to define her. She left three beautiful children into the care of her brother Phil and his wife Lauren. Sarah gave friendship and support to everyone who joined the KCSN Facebook Group she had started. She knew the value of the shared patient experience but it was her family who gave her strength and in particular her brother Phil who was her rock, supporting her throughout each day of her journey and attending every single Hospital and clinic appointment with her;

‘I am also very fortunate to have a brother who has been at my side from day one of diagnosis & without him I’m not sure if I could have come as far as I have.’

The KCSN Facebook Group Sarah started is now a safe haven for many hundreds of kidney cancer patients and carers and is a wonderful and fitting legacy for a kind, determined and inspirational young lady.

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