Kidney Cancer Scotland Patient Day 2013

13th November 2013 Hilton Hotel, Edinburgh.
Introduction and Welcome – 
Karen McNee, Scottish Development Officer, Kidney Cancer UK
Karen opened the day by discussing how the charity came into existence. James Whale MBE, had kidney cancer in 2000 and, after having his kidney removed, has enjoyed an active life ever since. He decided to set up the Fund in 2006 with the aim to increase awareness of kidney cancer among health professionals and the general public, support patients and their families through the provision of information, and to support research into the causes, prevention and treatment of the disease.
The Fund’s main focus is patient care and awareness; this is achieved through the provision of patient literature, patient days, the kidney cancer careline, and an online forum. The Fund has also written an online renal cancer course for nurses and healthcare professionals, which has attracted more than 2000 learners worldwide since it became available in March 2010.
Karen joined the fund in April 2012 and the new charity Kidney Cancer Scotland was launched in 2013. Karen introduced her two helpers, Kate and Lee and also explained that the day would be informal and relaxed and that people should feel free to ask questions.
Karen then went onto introduce Grant Stewart, not only as the Chair, but also as the person who would present first.
Current Research into Kidney Cancer Treatments: Scottish Collaboration On Translational Research into Renal Cell Cancer (SCOTRRCC)
Mr Grant D Stewart BSc, MBChB, FRCSEd (Urol), PhD, Senior Clinical Lecturer and Consultant in Urological Surgery, Edinburgh Urological Cancer Group, University of Edinburgh
Kidney cancer is an important disease and more needs to be done in advancing research. Where does kidney cancer sit? It’s now the 8th most common cancer in the UK and 9,500 people are diagnosed every year; 1,000 of those in Scotland, with over 300 cases in the ageing population. A larger number of people are being diagnosed in their 30s and 40s and this is because of the ability to better diagnose. Kidney cancer is the most lethal of the urological cancers, but the least well known, so more awareness is needed around kidney cancer which is why days like these are very important.
Kidney cancer is more common in men then women, and since the 1970s the incidence of the disease has risen as a result of improved access to ultrasound and CT scans, which identify lumps in kidneys.
When the surgical option is chosen, it is largely done by keyhole surgery, unless the lump is small. Partial nephrectomy is beneficial for older patients with small renal tumours since it retains kidney function. However, partial nephrectomy is technically more difficult to perform, although it is better for the patient.
Ablation – Cryotherapy is used in a variety of clinical applications. This technique uses hollow needles (cryoprobes) to freeze the tumour at temperatures of -80°C. Cryotherapy is used for tumours which are smaller than 5cm and is used on less fitter patients, where actual surgery would not be in the patient’s best interests, more usually in older patients.
Active Surveillance – this is used for patients who are not very fit, and in their 80s or older with a lump in the kidney which is unlikely to spread over the rest of their life span. Just keep checking that the lump hasn’t grown.
Metastatic disease – a single metastasis is unlikely to be removed with surgery; challenging when it’s not in the best interest for the patient for surgery to take place. Other treatments include cytokine treatment e.g. interleukin 2 (IL2) or interferon. However, the toxicity of these treatments is not good for the vast majority of the patients.
Tyrosine Kinase Inhibitors (TKIs)
Sutent, pazopanib and axitinib – many patients respond well to these and does increase patient’s chance of survival. Scotland is now ahead of England in that axitinib has been approved for second line treatment in patients who have relapsed on first line treatment with sunitinib or a cytokine, and has shown a good response rate.
SCOTRRCC
Scotland is ahead in the field of kidney cancer research. Samples of the kidney are used for research with the patient’s consent. In kidney cancer there are no research-based charities in the UK.
Translational research is being undertaken into kidney cancer; this is work commonly called ‘bench to bedside’ research. Protein levels in human kidney cancer tissues are being investigated and related to the patients who donated the samples to identify new biomarkers for kidney cancer. Identification of biomarkers will tell patents if they are likely to do well or badly from kidney cancer treatments and identify those patients who will need close monitoring with extra scans etc. Furthermore, identification of biomarkers will help identify which patients will respond to certain drugs or not. Those who do not respond can
be given a different treatment. This knowledge might allow doctors to target particular drugs to patients who would benefit from them, so called ‘personalised medicine’.
Scottish Parliament funded £500,000 over 3 years for a Scotland-wide biobank for kidney cancer tissue, which can be utilised across the United Kingdom.
Firstly they do a close follow-up with a CT scan, blood tests, then the patient comes back with an ache, disease remains, often incurable, a better way is needed to follow-up highrisk patients.
Downside is that drugs are expensive. NICE/SMC closely check licensed medicines There is a limit of £20,000/£30,000 per patient per year and if patients don’t respond to the drugs there not much use in taking it.
A biomarker is needed for kidney cancer. Biomarkers have been identified for other cancers, such as breast cancer, ovarian cancer and bowel cancer, and kidney cancer needs to catch up. We need to personalise the treatment of kidney cancer, regarding drug type, dose and which tumours to target and when.
Individual patients respond differently to different drugs and patients can respond differently from one week to the next. Kidney cancer tumours are very hetergeneous i.e. the cells in one part of the tumour differ from those in another part of the tumour. Targeting one bit of pathway doesn’t stop the tumour from growing.
Patients are central to research and need to be included along with clinical teams, pathologists and a range of scientists. Government and charities need to help raise awareness of research and to help with research.
There are 10 centres in Scotland. The surgeon at each centre has to get consent from his patients to take part in the research. The centres also include smaller District General Hospitals as well the larger hospitals, which have their own tissue banks. Collaboration may be a good way of collecting material.
Aims
To identify biomarkers and the effect of the drug on heterogeneity, and biomarkers response to drugs. New pathways are needed and there is a need to create a research infrastructure for kidney cancer in Scotland.
With regards to work on tumours, it has to be living tumour from the patient, it is then frozen, then thawed and once thawed can be worked on. Protein based approaches are done using a yellow dye, which is then looked at by a robot which saves on human error. Part of the study looks at what sort of tumour is it, how much is there. A mathematician then compares the tumour and uses others as comparators
Sutent
London clinical trials patients sampled before and after having treatment, tissue looks different, drug is changing tumour, why and is it relevant? DNA is then looked at and compared, there are 55 key proteins in kidney cancer and the proteins from tumours treated with sunitinib are variable. After analysis, the researchers identified 4 proteins that are massively altered with sunitinib and patient outcomes improve; patients with high
levels of these particular proteins in their tumour respond well, while patients with low levels of these proteins don’t respond. This work must be validated because only a small number of patients were investigated.
Questions
Is kidney removal always done? A percentage of kidney cancer patients don’t get kidney removed when tumour has spread; in most metastatic cancers you would not remove the primary lump. In the years before cytokines (IL2 and interferon) were available, survival was better if the kidney was removed. It is not clear whether removal of the kidney offers benefits to patients being treated with targeted medicines.
Why more prevalent in Scotland? No one thing, rare genetic abnormalities, risk factor of being older, male, smoking and obesity are all factors, but not just specific to Scotland.
Is kidney cancer less aggressive? Not really; it is an odd phenomenon for kidney cancer, it can spread to odd places, end of fingers, prostate, bones. In theory there is a 5year all clear for cancer, but kidney cancer needs looking after for longer as it can recur after a long period.
Is there anything in the environment that can cause kidney cancer? Some chemicals, for example cadmium, can assist in the development of the disease.
Is there any connection between occupation and kidney cancer? No, not in kidney cancer, in others yes.
The role of the pharmacist in managing patients with mRCC receiving treatment with oral tyrosine kinase inhibitors
Beverley Mitchell, Advanced Cancer Pharmacist Western General Hospital
Beverley started her presentation by giving an overview of what the presentation would consist of, starting with herself. Beverley qualified in 2008 and between then and 2010 was a rotational pharmacist. Since 2010 Beverley has been a urology tumour group pharmacist with a clinical commitment on a Tuesday afternoon in a renal cancer clinic.
There has been an evolution of treatment since 2007. Prior to then the outcome for renal cell carcinoma (RCC) was very poor; it was not sensitive to conventional chemotherapy or radiotherapy, and the mainstay of treatment was interferon, which had a poor outcome and patients did not do very well on this treatment. All this changed in 2009 when sunitinib was approved, and this revolutionised the management of RCC. Since then there has been an increase of patient numbers seen in uro-oncology clinics, and sunitnib (Sutent) was the first of many drugs to come.
How does a tyrosine kinase inhibitor (TKI) work?
It is the most common type of protein kinase; an enzyme that transfers phosphate from adenosine triphosphate (ATP) to tyrosine on protein in a cell and it acts as an ‘on/off’ switch to many cellular functions, such as angiogenesis (growth and development of new blood vessels), cell proliferation and survival. This pathway is activated in some cancer cells to cause cancer growth/proliferation. Tyrosine kinase inhibitors stop this process and thereby stop the process of angiogenesis and cell growth.
The side effects of treatment can vary and these range from nausea to diarrhoea and high blood pressure. Side effects are also treated differently between patients. For nausea, metoclopramide can be prescribed at a dose of 10mg three times daily. This has to be taken within 30 minutes of eating; it speeds up stomach emptying and prevents vomiting. You also have to adhere to a strict timetable when taking medication; for example, pazopanib must be taken daily as directed; all tablets at the same time less than 1 hour before or 2 hours after food. A small tip is to avoid any food that is too spicy, eat smaller portions and drink ginger tea.
Diarrhoea is a common and well-recognised side effect. Loperamide 4mg is initially given then 2mg after each loose stool until controlled. Watch for dehydration; drink plenty of water or liquid shakes. Eat small frequent meals to maximise calorie intake and minimise diarrhoea. Avoid lactose-containing foods and drinks. A baseline bowel pattern should be established.
Hypertension is a common side effect of TKIs and around 40% of patients experience high blood pressure, although this is usually mild to moderate in severity. Blood pressure should be monitored closely and treated as needed with standard anti-hypertensive therapy. Early detection is found through clinic monitoring, which needs to be done closely to get hypertension controlled and blood pressure stable. Blood pressure goal is systolic blood pressure <130 mmHg, diastolic blood pressure <80 mmHg.
Through the Cancer Lens Paul Sharp, kidney cancer patient
Paul started his presentation by thanking Grant Stewart for his very incisive and interesting discussion.
‘Cancer doesn’t define me’, 52 years old, married, and was in the Royal Navy for 13 years working in fuels aviation. Always been fit, reasonably good diet, exercised 2/3 times a week and a moderate drinker.
In October 2010 whilst shadow boxing with son had a sore kidney and a pain in back. Shirley, Paul’s wife, advised hospital, no other symptoms, no blood in urine, was initially told it was probably kidney stones and not to worry; a scan would be done and then go from there. The scan eventually showed a large tumour. Paul decided he wasn’t going to tell his wife and would somehow just convince her it was a sore kidney. He then realised he was never going to be able not to tell Shirley, which was the worst thing Paul had to do. Paul had his operation 3 weeks after that.
Reflections – post diagnosis, uncomfortable and bleak, often sat at home alone, dwelling, still in shock, many mood swings from anger to frustration and back again. Angry at the lack of knowledge he had.
Then a post operation euphoria with a wonder at why Paul, did alcohol have anything to do with it, previous job possibly? How would he manage work? All the thoughts that go through the mind. Paul then went onto the SORCE trial after metastases were discovered in the lung 1 year after the initial surgery, 3 years on still taking sunitinib and managing the side effects well.
Impact – Paul said it felt like being in the eye of the storm, he became aware of his mortality and that he felt like he was dangling on a golden thread that could be cut at any time. Paul found it difficult to tell friends, although they all wanted to help and they offered a lot of support.
Side Effects Management – At the beginning of the cycle severe diarrhoea so curry’s were out of the picture, mouth was very sensitive so used baby toothpaste and toothbrush. Can be in bed by 9 as so tired. At the end of the cycle can suffer with headaches, dizziness, muscle ache, stiffness, weight loss and somehow sleeps less. Paul said people need to know their own medicine cycle, don’t plan events in the second week, plan your work and social diary accordingly. You don’t need to make yourself feel bad if you need a week off from socialising. Ask hospital what help is available, if you can try and speak to other patients. Exercise makes Paul feel better and doesn’t diminish effect of drugs.
Future – Cancer is just a word, remove the fear, spread the word. YOU change things
The Role of the Clinical Nurse Specialist Rita O’Dea, Uro-oncology Clinical Nurse Specialist, Western General Hospital, Edinburgh
There are many ways a CNS has contact with patients and family including

• Telephone
• Liaise with GP
• Arrange Clinic (encourage other family members
• Meet and greet at clinic
• Discuss management plan
• Patient information
• Contact details
• Telephone Support

Before a patient starts drug therapy they need to be assessed so the following needs to be carried out, it also enables us to get to know the patient and hopefully a member of their family.

• Staging scan, pathology, biopsy, if required
• Performance status – self care abilities
• Past medical history
• Current medications
• Baseline bloods/Blood pressure
• Social network/family support
• Also : ability to swallow medications, able to attend the clinic, lifestyle, employment status financial support, benefits

The scheduling of drugs was discussed with sunitinib being taken for 4 weeks followed by 2 weeks off; during the 2 weeks off its good to have a break and recover. Plan a trip maybe. Can feel less well when off sunitinib. Is good for patients who are far from the hospital.
Pazopanib is taken continuously, so there is no time to recover or plan a trip; it involves more trips to the hospital and you are seen more frequently.
The side effects of both drugs are very similar, not only medically, but psychologically and can include some or sometimes even all of the following:

• Anxiety and lack of sleep
• Pain and low mood
• Anaemia (arrange transfusion)
• Off food and less calories
• Infection, perhaps having to go on antibiotics
• Still have to remember have house/family/pets
• The medication itself (mental and physical, chronic/accumulative)
• Thyroid imbalance
• Multifactorial
• Can feel less well when off Sutent

One of the main side effects people suffer from are nausea and diarrhoea so patients may need regular anti-sickness meds, antacids, non spicy, non fizzy and non greasy snacks, small and often are recommended and its best to have regular sips of drinks. Some patients don’t cope with food that is too hot so colder foods may be better and easier on the stomach. If necessary, regular anti diarrhoea meds as continued diarrhoea can cause dehydration
Some people suffer from hand foot syndrome, although it is more common for patients on sunitinib than pazopanib. The symptoms of hand foot syndrome include red, swollen inflamed palms/soles with blistering and thickened skin, notably at pressure points and skin folds. May need a temporary interruption of drug treatment and/or dose reduction.
Some selfcare tips include applying emollients and moisturisers regularly, avoiding exposure to heat (hot water). Avoid excess pressure or friction, well fitting shoes and gel inserts inside may help and it is better to elevate hands/feet when sitting or resting
A painful is a common side effect of both drugs, you can have painful, red, inflamed, gums/tongues with or without ulcer (s) a burning sensation and a loss of taste. A soft toothbrush and baby toothpaste is recommended (non fluoride) fennel/camomile soothing mouthwash, regular pain killers and try to avoid foods which cause trauma or sting when eaten. It is also best to avoid very hot or very cold food and also anything that is spicy, fizzy, hard or acidic. Early recognition and treatment is very important. If symptoms persist it is advisable to seek advice. It may require a temporary treatment interruption +/ or dose reduction.
Other adverse effects can include:

• Puffy eyes
• Hair depigmentation
• Breathlessness
• General Pain

The role of the clinical nurse specialist basically encapsulates being a consistent point of contact with specialist knowledge. You have to be visible and accessible, whether it’s by phone or by email. Knowing your patient and their families, giving them support and advice, information when they need and support services if that is needed. We are also available to other healthcare professionals if they need advice. Prescribing can also be part of the role of the CNS. But most important communication is key
Patient Support and Advocacy Lee Marriott-Dowding, Team Leader – Patient Support, Kidney Cancer UK
Lee defined the role of a patient advocate and talked about the patient advocate’s role at the Kidney Cancer UK. She then went on to describe the help currently available to kidney cancer patients and their families from the Kidney Cancer UK and from local kidney cancer support groups.
The definition of a patient advocate is someone who provides support to an individual or a group of people, or someone who pleads another’s case. A patient advocate cares passionately about an issue and takes action, speaks out about unjust and unfair situations and offers practical help, information, experience and personal support.
At the Kidney Cancer UK, our aim is to ensure the needs of the patient are first and foremost in everything we do. The patient support team at the Fund:

• Supports and empowers patients i.e. drugs funding/rarer cancer issues
• Raises awareness of kidney cancer
• Provides quality information and resources for patients
• Provides patient input into NICE quality standards and clinical trial design etc.
• Works with politicians, clinicians and pharmaceutical companies
• Promotes shared decision making/participatory medicine
• Provides input into NHS processes to ensure they are patient centered
• Supports fundraising for kidney cancer causes
• Challenges health policy that seems to fail the patient
• Wants to help improve the lives of kidney cancer patients, their families and carers.

The Fund supports patients in a number of ways, such as:

•  Kidney Cancer Careline – telephone helpline
• Online patient and carer forum
• Individual advocacy and practical advice
• Kidney cancer patient days
• Local support groups
• Kidney cancer literature and facts sheets
• Clinical trials updates
• Breaking news in the world of kidney cancer
• Online renal cancer course for healthcare professionals
• Patient grants for up to £1,000.

Another way the Fund can support kidney cancer patients is by providing help with setting up and running local patient support groups. Local support groups provide support to patients in a number of ways, including:

• Providing a forum for meeting others who know how you feel
• Friendship – talking things over with people who are in a similar situation to you
• Provision of high quality information
• Influencing your hospital services for the better
• Learning from clinicians, nurses and healthcare professionals
• Managing side effects of treatment and drugs
• Expert advice about benefits, returning to work, finances, complementary therapies, diet, daily living with cancer, pain management.

If you are interested in setting up such a group in your hospital, the Fund can help with the following:

• Communication – space on our online forum for group activities
• Publicity – group flyers, leaflets and posters
• Organising speakers on various subjects
• Start up grants to help with your set-up costs
• Experience – talk to existing kidney cancer groups for help and advice
• Introductions to clinicians and nurses.

Lee concluded her presentation by thanking the patients for listening. She provided them with the contact details for the patient support team and the careline at the Kidney Cancer UK.
The Development of an Advice and Information System for People Living With and Beyond Urological Cancer in Scotland: Work and Working Life Sarah Scott and Dr Sara Maclennan
This session was started with an overview of returning to work after cancer and the charity hopes to help with that and how others can get involved. A diagnosis of cancer and treatment can impact people in a number of ways:

• Physical or Fatigue, pain, limited mobility, sickness
• Social o Relationships, role, everyday activities, work
• Psychological or Depression, anxiety, reduced confidence

Most people are able to (eventually) return to work after a diagnosis of cancer. Without the right support they may experience difficulties in remaining in work. Conversely, a significant minority of people with cancer are not able to return to work. People with cancer are 1.4 times more likely to be unemployed than those with other chronic conditions. Returning to work after cancer is dependent on the type and stage of cancer, the treatment received, duration of treatment, resulting side effects and the type of job the person holds.
The challenges of returning to work are manifold, some people suffer from reduced confidence, they could have residual symptoms/side effects and have a lowered work ability. There may be an adjustment to tasks, hours, responsibilities, and environment. Some people have reported being discriminated against and being treated differently than before their cancer diagnosis. There is an impact on psychological well-being, there is a lack of specialist support in this area.
There are considerable benefits of returning to work:

• Marker of (complete) recovery
• Returning to normal
• Builds confidence and self-worth
• Financial benefits
• Social support
• Improved quality of life

Workplaces Support 
reasonable adjustments, reviews
Counselling Advice, policy information
Healthcare teams Information,
advice, support, Fit for Work Specialist support, Back to Work Plan
There are difficulties in providing effective, relevant and adequate information, support or advice. There is a lack of guidance, and not very much specialist training and education. There is not a lot of certainty where to ‘signpost’ people for further help. Communications between healthcare teams and works places is extremely limited
The aim is to develop a new advice and information system focusing on work and working life (Scot-PAIS). The system is intended to help people who have been diagnosed with any urological cancer, ie, bladder, kidney and prostate cancer in Scotland. We intend to involve urological cancer healthcare specialists, workplace organisations (line managers, occupational health, human resources).
The intent is to provide work-related information and advice to people diagnosed with cancer throughout their cancer care journey. To offer support to workplace organisations and healthcare professionals to help them to effectively help people returning to work. Promote active and open communication between all parties involved
PAIS is in the process of starting a study design consisting of 18 people with kidney, prostate or bladder cancer, 9 healthcare professional and 9 staff from workplace organisation. This is phase 1 and will consist of focus groups and interviews in Aberdeen
Phase 2 will be online questionnaires across Scotland and the UK 60 people from each group (n=120).
Phase 3 will be a feasibility workshop with 20 from each group (n=60)
Phase 2 will involve completing up to 4 questionnaires online with each questionnaire taking approx 20-30 minutes, it will anonymised and seeking opinions and experience on work and working life after a diagnosis of cancer, current information, advice and support, and finally what can be done to improve services.
Phase 3 will trial the new system during a half-day workshop, with the participants being 20 people living with and beyond urological cancer, 20 urological cancer healthcare professionals and 20 people from workplace organisations
If anyone is interested in taking part in the study design please contact us here.