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Our Stories

We are all individuals and our journeys are often quite different, but maybe yours will be similar to mine or more like another's? 

Either way, talking about our experiences helps us all to realise that we are not alone, or that different. Here are some of our amazing stories:

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Steve

My diagnosis came in 2010 at the age of 40, some weeks after a friend’s party. I told my GP that I’ve never had a hangover that lasted 3 weeks before! Blood tests were followed by an ultrasound, which quickly led to a CT scan. A week later I had my right kidney and a 14.5cm tumour removed. 3 years later the cancer returned in my lung, which was again removed by surgery. More recently, further spread to an inoperable area in my chest, meant that a drug combination was required. That treatment saw some tumours disappear and others shrink. I’m closely monitored by the amazing team of medics in Oxford and I’m able to continue working full time and try and live my life to the full. 

Throughout my journey I have been fortunate to be part of the FROG group and over the years I have benefited from practical advice and been lucky to have the support and friendship of group members, while I ride the rollercoaster ride that is living with Kidney Cancer.

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Bob

Bob was a stalwart of the FROG group and a trailblazer in many ways. He was diagnosed with renal cancer only to find out that his ‘healthy’ kidney wasn’t healthy at all and wasn’t working very well. The solution was for the amazing surgical team in Oxford to perform an auto transplant. Bob was one of the first people to have his kidney removed, the tumour cut out, repaired and then replaced into his groin. This fantastically complex procedure was a great success and meant that Bob was able to carry on without the long term need for dialysis. In addition to this Bob and his wife Jean discovered that the Heparin blood thinners he was taking, were seriously impacting on his health. Jean did some research that showed that in certain circumstances Heparin can induce a aldosterone deficiency. The fact that the medics in Oxford were open to patient input resulted in changes to procedures and is now internationally recognised.

Bob went on to backpack around the world on 25% kidney function across China, Africa, Thailand and Burma, before passing away in 2022 from a different condition, having led a hugely adventurous life.

Bryan

My story began in 1996! A tumour the size of a tangerine was found in my right kidney, so I had my right kidney completely removed (a radical nephrectomy) just a few weeks after my 31st birthday and everything was fine. Other than annual CT scans for the first five years, I had no other treatment and I lived a completely normal life. I continued to have an annual ultrasound each year, but it only looked at my abdomen, kidney bed, prostate and bladder. Unfortunately, in 2018 I had a recurrence, but this time it was deep in my pelvis. To everyone's surprise and without realising it, I had actually been in remission for 22 years! A biopsy confirmed that the kidney cancer had returned. Fortunately, a full body PET scan, confirmed that the cancer was only in my pelvis, so I was able to have it removed, albeit, it was a major operation and has left me with some life-long mobility issues. A year or so later, I had a further tumour return in my pelvis, which was treated with radiotherapy. I then developed a tumour in my first left rib, which I also had radiotherapy on and eventually had it removed.

Due to this new activity, I began my drug treatment journey with immunotherapy in February 2021, starting on a combination of Pembrolizumab and Axitinib. I adapted well to the treatment and I only had a few issues, mainly with loose stools, a sore mouth and increased blood pressure. Now I'm over three years on from starting treatment and I've had over fifty doses of Pembrolizumab. I've moved from Axitinib to Lenvatinib, as I had another small tumour develop in my pelvis in 2023.

My consultant oncologist, suggested we joined the FROG group once my cancer returned again in 2020. I was apprehensive at first, I guess because it meant that I was accepting that I had an incurable cancer diagnosis. However, I can honestly say that we are so grateful we did. It has really helped us both come to terms with my diagnosis and that we can have open and honest conversations about everything from bowel movements to pain management, without fear of embarrassment or judgement. There are no silly questions or subjects to discuss. We would thoroughly recommend anyone to join and benefit from the support, friendship and experience the group offers.

All in all, after over 30 years after my first cancer diagnosis, I am 'stable', living a relatively normal life and taking every opportunity to make more great memories with my amazing wife and biggest supporter, Karen.​

 

'If not now, when?' is our new mantra for life!

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Ian

I was born in 1956 in Bolton Lancashire and was married to Susan for 35 years. We moved to Brackley (work promotion) with our 2 grown-up (ish) offspring in 2002 and loved the area from the start.  But in 2008, Sue was diagnosed with advance endometrial cancer, and after surgery, radiotherapy and a long (and happy) period of remission, sadly died in 2014 aged just 56.

Deciding to stay in my adopted, new home-town, I worked on (control & automation systems) until retiring in 2021. In June 2022 I had a CT Scan following some odd blood results. This revealed a very large tumour on my right kidney and suspected metastatic spread onto both lungs.  This was confirmed one month later as advanced Renal Cell Carcinoma (RCC) and I began combination treatment with immunotherapy and TKIs in October 2022. Without detailing all of the ups & downs, here I am 2 years later; doing pretty well and enjoying myself.  Although the treatment can be draining and some of the side-effects have seen me hospitalised on a couple of occasions, I (like many others) have been given an extended life that simply would not have been available 10 short years ago.  

Perhaps the best decision I have made, throughout my whole cancer experience, has been joining the FROGs.  I was recommended to go along to my first meeting by one of the specialist nurses, and I have attended every meeting I have been able to since then.  The honesty, good humour and willingness to share anything and everything, which are the hallmarks of the group, have been my savior on numerous occasions.

Others would (I hope) consider me an optimist, but I try not to delude myself.  Most of us FROGs are in a fight.  For some, the challenge is immense. For some, maybe a little easier.  But the collective, two-way support of the group is a tangible benefit for all of us.  And long may it continue....

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Julie

I was diagnosed in July 2004 and my kidney was removed in August 04. We set about changing our lives, selling our home in Gerrards Cross and building a holiday home in Crete to focus on relaxing, sun and fresh food. No treatment at that point, just follow up scans for 5 years. In 2016 driving home from meeting lunch friends my eyes flickered and it became obvious something wasn’t quite right and I looked for a place to pull over on a grass verge. The last I remembered was saying to myself to put the hand brake on, which I did and awoke in hospital with my family around me. The doctor told me I had a mass in my brain and I elected to have surgery to remove it. I was awake whilst they performed the operation, which was interesting and it was confirmed to be a kidney cancer tumour. I was discharged the following day. I walked out to the car, felt absolutely fine, no problems. Anti-epilepsy pills were prescribed and I was told to take them for life. I did not get on with them so went to a consultant in London who told me my husband had more chance of having a seizure than I did! I stopped taking them and began to feel normal again. It is 8 years since then and so far so good, as far as my brain is concerned. November 2019 scans revealed a metastatic tumour was on my sacrum, along with several other very small lesions in my spine. Cyberknife on 5 consecutive days in the first week of January 2020 was prescribed and in February I started Pembrolizamab infusions every 3 weeks along with Axitinib. We managed to have trips to our holiday home in between and I felt well. 18 months in my body rebelled. Feet peeling, itchy body rashes, diarrhoea, then hospital stays for dehydration and hypercalcemia. Axitinib was stopped, started and stopped again until a break from treatment was required. I then moved consultants to be more in my area should emergencies arise. November 2022 scans revealed one of the spine tumours was getting near my spinal cord. Sabreknife 3 sessions over a week, the week before Christmas was performed. First week after new year 2023 I could not walk with the pain and between January and June was not a happy time. 4 emergency hospital admissions and I have to say the NHS did not work well for me. On 4th July 23 I had an operation to place rods ‘scaffolding’ my spine. After three months in hospital and not being able to walk during that time I left on 4 September 23. Once home I have recovered well. There were some bleak thoughts during that time but believing people who told me I could do it, was immense.

There are hurdles ahead but if you had told me I would be where I am today, I don’t think I would have believed you. This is what FROGS is about, giving you hope, encouragement and belief. Assurance when
you need it. Advice from people in your situation who have been been there and done it themselves. A wealth of knowledge from speakers, who are bringing new treatments to help give us hope and enables us to confidently question our cancer teams. And most of all Friendship. 
Steve (our leader) is our star!

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Nick

FROG to me has been a vital outlet in the way that I have dealt with my cancer. I was diagnosed with Renal Cancer (Kidney) in late 2023 and had my left kidney and a 13cm tumour removed. I was 41 and had a young family, so it was a scary time, especially understanding the potential risk of reoccurrence and what that would mean for me in the future. Luckily I was put in contact with Steve from the Frog Group and we had a conversation that truly changed my perspective and really helped me to understand how to move forwards. 

 

Since then I have attended many FROG meetings and have found every member of the group to be kind, understanding and supportive. It has been really helpful to speak with people who have either gone through or are going through the journey of dealing with Cancer. There is a wealth of knowledge and experience within the group and people are always happy to help give advice, insights and explain what some feedback from the medical team may mean in layman's terms.

 

There is a huge sense on community in the group and it makes me and my partner feel like we are not alone and that I am still normal (or as normal as possible!), I would advise anyone dealing with Renal Cancer to connect with the group as it will help make the battle with Cancer easier!

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Geoff

I’ve always been fit and active. To date I’ve been exercising at a gym for nearly forty years. In 2009, I backpacked from Lands End to John o’Groats with just two rest days, camping most nights. I retired in 2016, aged 65. My wife and I took our camper van around Sweden and Finland for three months. In October/November, I was undergoing a general health age related check up. I went backpacking in the Chilterns with friends for a weekend and was on my way back to catch the Oxford Tube into Oxford. I nipped behind a hedge for a wee - but no wee, just a bladder full of scarlet blood! Something for the local animal population to savour.

A CT scan showed a 12.5cm tumour on my left kidney. In January 2017, I underwent a radical nephrectomy at the Churchill Hospital and life gradually got back to normal. Four months later I backpacked the 270 mile Pennine Way from the Peak District to Scotland with no problems. In 2018, I backpacked the 500 odd miles Great English Walk from Chepstow to Berwick-upon-Tweed. I had annual scans for five years and all were clear. At the fifth scan, I was offered one the following year (2022). It was this scan that showed the cancer had returned so in 2023 I was opened up again, this time by Mark Sullivan. A CT scan showed some remnants of the cancer and he was apologetic that he hadn’t been able to remove it all but it was deeply embedded so further surgery wasn’t an option. I was then referred to Prof. Protheroe at the Churchill. 

In May this year (2024), I was started on Axitinib tablets and Avelumab immunotherapy. I didn’t get on with the latter and this was discontinued after just two sessions as a blood test showed it had caused autoimmune hepatitis in my liver. I was prescribed a reducing course of steroids to help the liver and am about to restart the Avelumab in the hope that this will not happen again. In the meantime, I am feeling terribly fatigued all the time, quite likely caused by the mets in my liver. The various mets elsewhere seem to be stable.

I am so grateful to live not far from Oxford with the facilities of the Churchill and that there is a Maggie’s centre there. The FROG support group has been invaluable and has enabled me to get to know people in similar situations and to tap the mine of advice available. I’m far from being out of the woods.

FROG's Findings

Whilst we are not able to provide medical or legal advice, we can share our own personal experiences on just about everything related to having kidney cancer, the treatment of it and what we have found works for us!

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We hope you find the information below helpful, but if you'd like more information about any of these topics, please visit our Associates page, to go to our supporting cancer charities sites.

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