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Latest News

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RAMPART UPDATE: Covid-19 Participant Information

20 Mar 2020
The team of doctors and researchers responsible for the RAMPART study are reviewing the potential risks and benefit of the research on an ongoing basis. As we have learned more about the coronavirus pandemic (also referred to as Covid-19) and the illness it can cause they have decided to make some important changes to the RAMPART study.

What are the changes?

Participants will no longer receive any RAMPART study treatment. We will review this decision on an ongoing basis as more information becomes available. Depending on how long the coronavirus pandemic continues it may mean that you will not receive any more study treatment.

You will still be followed up as part of the study, but your study doctor may make changes to the frequency and type of follow-up visits you will have, according to what is most appropriate for you. This may include attendance at hospital when that is a safe option, however for the next couple of months you may have telephone follow-up only. This all means you may have a different follow-up schedule to other people on the study. It is vitally important that you contact your study doctor if you have concerns about your health in the coming months, just as you would have done before this change.

No new participants will be invited to take part in the study until the Covid-19 pandemic situation improves.

Why have these changes been made?

We have made these changes after reviewing the available evidence and deciding that these changes are in the best interest of RAMPART study participants.

We know that the drugs that you are taking as part of the RAMPART study can cause side effects that are best treated with another class of drug called steroids. We have learned that steroid treatment can lead to a greater risk of Covid-19 related illness, which in some cases can be fatal.

We also know that attending hospital for treatment or study-related visits may increase your risk of exposure to Covid-19 compared to not attending hospital.

As the number of cases of Covid-19 rise, these risks outweigh the possible benefit you might receive from treatment in the RAMPART study.

What if new information comes available?

We review all of the changes we have made to the RAMPART study on an ongoing basis as we learn more about Covid-19. As soon as it is safe, we will ask you to return to your regular study follow-up schedule. However, we do not know yet whether you will be able to start your study treatment again.

We will continue to post relevant information about the RAMPART study on our website: www.rampart-trial.org

Thank you for taking the time to read this information.

The RAMPART Trial Team

Click here to read these changes on the Rampart website
Survey – Can a scan tell if a lump in the kidney is cancer or not?

06 Mar 2020

We are hosting this survey on behalf of our Trustee and Senior lecturer in renal cancer surgery and honorary consultant urological surgeon at The Royal Free London, Maxine Tran PhD FRCS (Urol)
Team Riddell take on the Jurassic Coast

03 Mar 2020

10 days between diagnosis and operation to then 8 days later signing up to the Jurassic Coast Challenge!

Determined and focused kidney cancer patient, Emma Riddell, a week after her operation has decided to pull together friends and family to take on the Jurassic Coast Challenge in May, and has been blown away by the level of support through sponsorship. With a positive attitude, you can go a long way and Emma certainly has that. Be inspired by Emma’s story and sign up too!

Emma’s story starts here..

‘I can’t begin to tell you how weird and surreal I have found this, it’s difficult phrasing “I have Kidney Cancer”, well I did until 18th January 2020, weird and surreal are words I use frequently. I can’t explain it, or how I feel but I do know that I haven’t come to terms with it yet and feel as though I am waiting for it to hit me.

Now those of you that know me, know I love detail so you’re getting the story of how I came to get this diagnosis….if you don’t fancy this bit then don’t worry, you don’t have to read it….just skip to the donate button! BUT before you skip, never be afraid or put off seeing your GP about something that is reoccurring or you are worried about, I genuinely believe my GP saved my life, my Cancer was picked up early and I will be forever grateful 💚

Rollback the clock to November 2019, another phone call appointment with the Doctor to say I had a UTI and needed antibiotics. I happened to mention that this was at least the 6th infection that year and that I really did need to come and see someone about them. I count my lucky stars and do wonder if things could have been very different if I hadn’t got that GP that day. I was given antibiotics but also referred for an ultrasound of my bladder and kidneys, just to check everything was ok.

Two weeks later I had my first ultrasound, not that anything was said to me during the appointment but I knew something was a bit wonky with the left kidney as both times I was scanned he spent a very long time on the left-hand side. A phone call from my GP a week later advised that I had a cystic area on my kidney, they didn’t suspect it to be sinister but they wanted it checking sooner so I was referred to Urologists under a 2 Week Wait referral….so very grateful to my GP, don’t worry I have thanked her.

Another 2 weeks went by and I had another ultrasound at the hospital (didn’t actually need a second scan but …), this appointment confirmed a lump and I was then referred for a CT scan.

It was probably another 2 weeks before the CT scan, I cannot begin to tell you how I felt waiting for those results. I had one day where I just cried, the thought of not knowing what is going on in your body is horrendous, the thought of not knowing if you have cancer and if you do has it spread, it was just awful and time seemed to move so slowly. We received the results, confirmation of a 3.9cm lump slap bang in the middle of my left kidney. It was at the this appointment the consultant told me the UTIs weren’t related, I’ve not had an infection since….things could have turned out so very differently. There was a 50/50 chance that this could be Cancer and I needed a biopsy to tell. It was at this point we decided to let some family and friends know, it was such a relief sharing the news and gaining the much needed support.

Biopsy day happened to fall on NYE, you know we always have a massive fancy dress party and I was determined that I was not cancelling. I was in the hospital all day (had to lie flat for 4 hours after the procedure), we got home just after 5, the party went ahead and our amazing friends rallied round, I did not lift a finger but just sat on my sober butt taking in everyone’s not sober antics ….

2 working days after the biopsy I got a phone call to come in for an appointment on Wednesday 8th January. I went into that appointment prepared for bad news. My lucky Batman pants that I wore to every appointment (caused much laughter at the biopsy appointment) turned out not to be so lucky after all.

Papillary Renal Cell Carcinoma, was the diagnosis. It’s a rarer kidney Cancer, being female and young (stop laughing) is also rare. When you look at the statistics it’s fascinating, more male than female and ages 60-70, I do not fall into the typical stats and wonder if this could this have rumbled on for years growing until some symptoms did start to show. I know I shouldn’t dwell on this but it’s difficult not to wonder “what if”. The only symptoms I would say I had was back pain which felt like it was inside and my kidney but it wasn’t all the time and certainly not something I would have gone to the GP about.

The treatment was a radical nephrectomy because of where the tumour was. To be honest, I was happier with this treatment, I didn’t want the risk of anything being left behind to fester and grow if they only did a partial nephrectomy. They expected it to be done between mid to end of January.

The operation actually happened 10 days later on January 18th, 62 days after my initial referral by my GP.

It hasn’t been easy, it’s painful and tiring but I am glad it’s done. I am awaiting the results as I have no idea as to the grade of Cancer I had and what pathway of follow-ups and any possible treatments may come.

In this time I have found Kidney Cancer UK a massive support, from their literature online to the patient support group page on FB and I want to give something back and do something positive out of this diagnosis.

On May 16th a group of us “Team Riddell”…(not very original but we couldn’t come up with something hilarious to agree on) will be taking part in the Jurassic Coast Challenge. Now I have had to be realistic, whilst I would love to stomp the full 100km it’s just not going to happen and I have signed up for the 25km route. At the moment distance doesn’t matter, I can raise awareness & badger the hell out of you all to donate money (don’t forget your gift aid !).

So do your stuff, donate and show your support.

Love Em 💚’

You can read updates on Emma’s progress as she adds to her Justgiving page by CLICKING HERE

Keep going Emma, you can do this! We would like to say a big thank you to Emma and ‘Team Riddell’ for choosing to support us, and good luck on the big day!

For more information about the Jurassic Coast Challenge click here, why not join us?
Butterfly Boxes rise to support Kidney Cancer Patients

03 Mar 2020

Following her own personal experiences of kidney cancer, our Community Champion, Mary Stopher is bringing brightness to other patients through butterfly boxes. Read Mary’s idea behind the Butterfly Box and what they are…

‘This is my personal project that I am funding myself in the hope that I can bring a little brightness to fellow cancer patients during their most turbulent days.

Two years ago, I was diagnosed with kidney cancer. It rocked my world and shook my family to the core. The effects of such a diagnosis remain to this day in the different ways that it has changed our lives.

At my diagnosis I unfortunately discovered there was limited support/ awareness of this type of cancer, and found that difficult. However I’ve always believed that some good should be derived from the bad experiences in life, and am now fortunate enough to find myself in remission, and I am intent on changing the experience of others.

To that end, I’m wishing to give each patient in my local area diagnosed with kidney cancer, and , who are embarking on a course of treatment, a butterfly box. 🦋

Each box will contain a few essential items, as listed below, and the much-needed information provided by Kidney Cancer UK, during such difficult times for patients within the Colchester, Cambridge and Chelmsford areas.

My hope is to reduce the isolation that can be caused by this illness, mainly due to the limited awareness and understanding for this type of cancer. They are called butterfly boxes because at the most poignant times during my illness, I had several encounters with a butterfly, at times when leaving the house for treatment, and other stressful moments, which strangely provided some comfort.

Each Butterfly Box contains a variety of the below items, and each box has the invaluable information regarding support etc from Kidney Cancer UK.

* Small toiletries; shampoo, conditioner, body wash, body lotion
* Dry shampoo
* Hand cream
* Lip balms
* Peppermint teabags ( ideally boxes of individual packets )
* Anti-nausea remedies
* Packets of tissues
* Eye masks
* Small packets of flavoured boiled sweets or mints
* Small scented candles
* Small relaxation products such as sleep spray
* Comfy bed socks
* Pocket size Sudoku, quiz, or crossword books
* Pens
* Small notebooks

I have been lucky to receive donations from some local stores, kind monetary donations , and fundraising events are being planned to help keep the project running.

You can also watch my progress on instagram, my profile is butterfly.kc

Thank you for reading

Mary Stopher’

Kidney Cancer UK are working closely with Mary by providing facts and figures on kidney cancer diagnoses, helping access hospital units such as Addenbrookes in Cambridge and by sourcing donations to go in the Butterfly Boxes.

If you feel that you can support this worthy cause, please consider donating via our website here or you can purchase specific items for the butterfly boxes via Mary’s Amazon List here

If you would like to be kept up to date with the boxes and learn more, as we work with Mary, or would you like to help distribute the boxes further afield? If so, please email Alice at fundraising@kcuk.org.uk

Thank you for your support!
Nivolumab+Sitravatinib Combo Impresses in RCC

17 Feb 2020

Combining a broad-spectrum tyrosine kinase inhibitor (TKI) with an immune checkpoint inhibitor resulted in a high disease control rate in a preliminary dose-finding trial involving patients with advanced clear cell renal cell carcinoma (ccRCC).¹

All but 3 of 38 patients benefited from the combination sitravatinib and nivolumab (Opdivo), including 15 confirmed objective responses. The combination resulted in a median progression-free survival (PFS) of 10.3 months.

The clinical activity and preliminary PFS results far exceeded the historical performance of other therapies used to treat ccRCC, Pavlos Msaouel, MD, of the University of Texas MD Anderson Cancer Center, reported at the 2020 Genitourinary Cancers Symposium.

“In this single-arm, phase I/II trial of sitravatinib plus nivolumab…we observed a higher objective response rate and longer progression-free survival than historically reported with single-agent nivolumab or single-agent cabozantinib,” said Msaouel. “The combination has an acceptable toxicity profile, associated with manageable adverse events. The combination of sitravatinib and nivolumab is now being explored in other tumor types.”

Sitravatinib inhibits multiple receptor TKs, including the TAM family, VEGFR2/PDGFR/cKIT family, and c-MET. Inhibiting those targets might enhance antitumor activity by multiple mechanisms, including improved tumor perfusion, depletion of immunosuppressive cell subsets, and increased T-cell priming, said Msaouel.

In a phase Ib trial involving patients with anti-VEGF refractory metastatic ccRCC, single-agent sitravatinib led to objective responses in 8 (25%) of 32 patients and a clinical benefit rate (response plus stable disease) of 94% (30 of 32 patients). Multiple patients had responses and stable disease that lasted beyond 52 weeks.²

Nivolumab has an approved indication for advanced ccRCC and is associated with an ORR of 25% and median PFS of 4.6 months.³ Investigators hypothesized that administration of sitravatinib with nivolumab would augment nivolumab responses in patients with metastatic ccRCC that had progressed on antiangiogenic therapy, said Msaouel.

Eligibility criteria were similar to those in the CheckMate-025 randomized trial comparing nivolumab and everolimus (Afinitor): disease progression on 1 or 1 prior antiangiogenic therapies, measurable disease, and Karnofsky Performance Score (KPS) ≥70. The primary objectives were safety-based dose finding (no dose-limiting toxicity within 12 weeks) and efficacy (no disease progression within 6 weeks).

As of Jan 1, 2020, the trial had accrued 40 patients, all of whom were included in the safety population, as well as 38 in the evaluable efficacy population. Msaouel said 1 patient discontinued treatment prior to the first tumor assessment because of an adverse event and another patient had been followed too briefly for efficacy assessment.

The patient population had a median age of 68, and men accounted for 35 of the 40 patients. All but 6 patients had intermediate-risk disease, and 37 of 40 had KPS scores of 90 to 100. All but 5 patients had a history of nephrectomy, and 32 had no prior radiation therapy.
Five patients had received 2 prior systemic therapies and the rest had received 1. The most commonly used antiangiogenic agents were sunitinib (Sutent, 35%), pazopanib (Votrient, 57.5%), and axitinib (Inlyta, 15%). The median duration of first-line therapy was 10.8 months.

The most frequent adverse events (any grade) were diarrhea (73%, 10% grade ≥3), fatigue (68%, 10%), elevated liver enzymes (ALT, 58%, 5%; AST 43%, 0), increased lipase (50%, 30%), proteinuria (45%, 13%), anorexia (43%, 3%), abdominal pain (35%, 0), elevated amylase (35%, 13%), and nausea (35%, 0). Other grade ≥3 adverse events were hypertension (8%) and 1 case each of elevated serum creatinine, anemia, and other endocrine disorders.

One grade 5 treatment-related adverse event occurred, involving nivolumab-related myasthenia gravis. Four of the 40 patients included in the safety analysis discontinued treatment because of adverse events.

Toxicities necessitated sitravatinib dose reductions in 21 patients, 15 of which occurred within 12 weeks. Three sitravatinib doses were evaluated in the trial (80, 120, and 150 mg), and all 3 patients treated with the 150-mg dose had dose-limiting toxicity within 12 weeks. The most commonly used dose was 120 mg (22 of 40 patients), and 15 received 80 mg.

The full article is available to read on Targeted Oncology
Grant Stewart New Chair of Surgical Oncology, University of Cambridge

03 Feb 2020

We are delighted to announce that Grant Stewart, Chair of Kidney Cancer UK’s ‘Kidney Cancer Accord‘ steering group, is to take up the position of Chair of Surgical Oncology from the beginning of February. In his new role, Grant will lead academic surgical oncology and ensure that Cambridge continues to be a world leader in this discipline.

Grant is an academic kidney cancer surgeon operating on around 70 patients with the disease every year. He introduced the robotic kidney cancer surgery programme in Addenbrooke’s in 2016 which significantly improves patient recovery time.

Grant also established the Cambridge Renal Cancer (CamRenCan) Collaborative, a group of over 40 clinicians, translational and basic scientists working together to optimise the management of patients with initially localised renal cancer. Under his leadership a range of new clinical trial options are now available for patients with localised kidney cancer in Cambridge and across the UK.

Grant’s translational research focus is on developing biomarkers to enable early detection of kidney cancer, identification of patients at high risk of disease recurrence, allowing improved patient follow-up, and prediction of patient response to systemic therapy.

“I am delighted to have been appointed as Professor of Surgical Oncology at the University of Cambridge,” said Grant. “My aim is to undertake internationally leading surgical oncology research that will result in impactful paradigm shifts in patient care and outcomes from cancer.

“Becoming the Chair of Surgical Oncology provides a unique opportunity for me to work with clinical and research colleagues across surgical specialities, galvanising clinical, translational and basic science research into cancers beyond my immediate clinical and research niche of kidney cancer.”

Before moving to Cambridge in 2015, Grant spent seven years as a Lecturer and Senior Lecturer in the internationally renowned Department of Surgery at the University of Edinburgh where he gained experience in working across multiple surgical oncology subspecialties.

“The appointment of Grant to this important role marks the end of a long and diligent international search,” said Professor Richard Gilbertson, Centre Director. “We are absolutely delighted that Grant has accepted this new role. His leadership of both clinical and research enterprises in Cambridge have been exemplary and we all look forward to working with him further across the CRUK Cambridge Centre.”

“We are absolutely delighted that Grant has accepted this important position. The role furthers our ambition to deliver translational research, linking basic science to the clinic. More specifically, this addresses our strategic development of surgical oncology across many areas of surgical practice,” said Professor Andrew McCaskie, Head of Department of Surgery.