THE SPECIALIST CENTRE FOR KIDNEY CANCER AT THE ROYAL FREE

Transcription

1 THE SPECIALIST CENTRE FOR KIDNEY CANCER AT THE ROYAL FREE

2 CONTENT Introdction 04 Specialist mlti-disciplinary team clinic (smdt clinic) 07 Treatment options 09 Yor key worker 11 Holistic assessment 11 Cancer conselling service 12 The macmillan cancer information and spport centre 12 Macmillan benefits advisor 13 Complementary therapy 13 The interpreting service 13 How to get here 14 Additional information available 16 Qestions yo may wish to ask yor specialist team 17 03

3 Introdction The specialist centre for kidney cancer at the Royal Free is an expert centre which leads and coordinates the care of people with kidney cancer. Patients with a non-canceros tmor will also be seen in the centre. We recognise that the time after a cancer or tmor diagnosis will be a worrying one for yo and yor family. We hope this brochre will help yo nderstand the treatment plan that yo will follow after yor diagnosis, as well as introdce the type of healthcare professionals yo will meet along the way. The specialist centre has been created to lead and coordinate the care of people with kidney cancer across north central London and west Essex. People with kidney cancer will benefit from: the dedicated and highly specialised services available at the Royal Free a coordinated pathway from diagnosis throgh to treatment and aftercare spport from one and sometimes two, dedicated clinical nrse specialists who will be with yo throghot the patient jorney. We have a website that contains more detailed information abot the centre and treatments that are available: kidneycancerservice Spport is also available from a patient navigator who will advise yo abot: transport parking accommodation arrangements hospital appointments and any other administration isses to make sre yor jorney to the Royal Free and yor time here is as smooth and comfortable as possible. Contact details for the patient navigator are: Direct telephone: rfh.kidneycancer@nhs.net (Ensre this is placed below the last paragraph and not nder the photo as crrently displayed) 04 05

4 THE KIDNEYS The kidneys are two bean shaped organs abot the same size as a fist. They are near the middle of the back, one on either side of the spine. The kidneys are part of the body system called the rinary system. This system filters waste prodcts ot of the blood and makes rine. Urine drains from each kidney, throgh a tbe called a reter, to the bladder where it is stored. When yo re ready to pass rine it leaves the body throgh another tbe called the rethra. The kidney Renal pelvis Ureter Right kidney Right reter Bladder Kidney cortex Kidney medlla Left kidney Left reter Urethra Blood is carried to the kidney throgh a blood vessel called the renal artery. Renal means to do with the kidney. After the blood has been filtered by thosands of tiny filters called nephrons, it travels back to the rest of the body throgh the renal vein. It is important to note that all normal renal fnctions can be maintained by one kidney. For example, a person who is born with only one kidney or who donates a kidney for organ transplantation can still live a perfectly healthy life. Similarly, a kidney cancer patient who has one kidney removed by srgery will not necessarily sffer any significant impairment of overall renal fnction. Specialist mltidisciplinary team clinic (SMDT clinic) Yo have been referred to the specialist centre for kidney cancer at the Royal Free to discss yor treatment. Depending on yor treatment options yo may meet some or all of the team at yor appointment (a srgeon, a radiologist, a clinical nrse specialist (CNS)and/or an oncologist). The clinical nrse specialist will be yor main point of contact throghot yor treatment at the Royal Free. The patient navigator will assist yo with qeries abot getting to the appointment, and help with changing clinic appointments if reqired (tel: ). Yo may have frther tests at this appointment and will be able to get information abot yor options for treatment from each of the appropriate specialists. Wherever possible we will aim to do yor pre-assessment tests for srgery at this appointment and agree a date for yor treatment. At the end of this brochre yo will find an example of qestions that yo may find sefl to ask at yor appointment. Yo are recommended to write down and bring with yo any of yor concerns to discss with the team at the appointment or yo can contact the clinical nrse specialist after the appointment contact details are given later in this brochre. PLEASE NOTE YOU SHOULD ALLOW 2 3 HOURS FOR YOUR FIRST APPOINTMENT. We wold encorage yo to bring a partner, friend or relative to this appointment 06 07

5 Specialist mltidisciplinary team meeting This is a weekly video conference meeting which links yor local hospital and other hospital sites/specialists for discssion abot yor treatment. The meeting enables all team members to discss every new patient with a renal cancer and where appropriate, agree staging (an indication of where the cancer is located) and plan frther investigations and/or treatments. Existing patients reqiring a change of treatment are also discssed at these meetings. An SMDT recommendation is made for each new patient (or patients reqiring a change of treatment), and the options for treatment will be discssed with yo at the clinic. The SMDT may recommend that frther tests are necessary, in which case yo will be contacted to explain the need for this. Specialist mltidisciplinary team (SMDT) At the Royal Free yo will be looked after by a specialist mltidisciplinary team (SMDT). The SMDT consists of doctors, nrses, and coordinators who all have specialist training and experience in diagnosing, treating and spporting patients with kidney cancers. The team incldes: Urologist (a srgeon who specialises in kidney cancer) Interventional radiologist (specialist doctor in non srgical treatment) Clinical oncologist (specialist doctor in cancer treatments sch as chemo) Radiologist (a specialist doctor who works with x-rays and diagnostic scans) Histocytopathologist (who looks at tisse samples and cells to diagnose cancer) Clinical nrse specialist, yor key worker (a registered nrse with specialist qalifications and skills) Research nrses / research practitioners Specialist nrse who looks after patients in clinical trials MDT coordinator (responsible for ensring patient names and details are provided for the team at the SMDT meeting by liaising with clinical and administrative teams across departments and referring hospitals Patient navigator (administrative staff who work to ensre appointments are schedled appropriately and spport patients in booking and providing information abot appointments) Treatment options More detailed written information will be given to yo when yo attend the clinic bt the types of treatment options are described here: Srgery Is the most common treatment for a kidney cancer or tmor. It can be a cre for an early cancer and part of a treatment for an advanced cancer. Removal of the entire kidney is called a nephrectomy. If the tmor is small the srgeon will remove only part of the kidney, a partial nephrectomy. It is possible to have keyhole srgery which is called a laparoscopic nephrectomy. Robotic assisted srgery This is laparoscopic srgery sing robotic assistance throgh the small keyhole incisions. The keyhole instrments and a camera allowing the srgeon to see inside of yor abdomen are attached to the robotic arms. The da Vinci robot was introdced to the Royal Free in The da Vinci system is sed extensively throghot the US and Erope, and it is crrently being sed in many different areas of srgery. To date there have been 1.2 million operations performed with the robot. Cryoablation Is a techniqe that destroys tisse, in this case throgh freezing. In order to prodce the freeze, needles are placed into the kidney, sing image gidance (for example ltrasond and CT scanning). A mixtre of gases is then sed to freeze and thaw the tips of the needles. Both srgery and cryotherapy are performed nder general anaesthetic. Yo will sally receive a preassessment test for these procedres dring yor first clinic appointment or occasionally be given an appointment to attend for this assessment at a later date. Radiofreqency ablation (RFA) Uses heat from an electric probe to destroy the tmor. The procedre is sally performed by passing a needle throgh the skin sing image gidance (for example ltrasond and CT scanning). Following any of the above treatments yo will be invited back to the SMDT clinic at the Royal Free to have a check-p appointment 08 09

6 If the consltant is happy with yor recovery he will make arrangements for yo to have the next appointment at yor local hospital. All yor ftre appointments will be at the local hospital. Yor point of contact will then be the clinical nrse specialist at yor local hospital Clinical trials Clinical trials play a very important role in helping search for new and more effective treatments as well as better ways of diagnosing, screening or preventing a disease. Clinical trials are the best way to find ot whether or not a new treatment is better than the crrent standard treatment. A clinical trial is a medical research stdy involving people. People taking part in trials are always volnteers. Trials are done in all areas of medicine, not jst cancer. They can involve testing new drgs and combinations of drgs, as well as new technology and procedres. It is possible that there will be clinical trials that are sitable for yo. Yor medical team shold discss this with yo. BIO banking Blood or tmor samples may be obtained to assist research. Yo may be asked to give yor permission to se some of yor samples for research into cancer. Immnotherapy Stimlates the body s own immne system to attack the cancer cells Targeted therapies This treatment ses drgs which target blood vessels and growth factors in the cancer cells. These are sed to treat kidney cancer that has spread beyond the kidney. They have side effects and yor doctor can give yo more detail. Spportive and palliative care Is abot providing spport at all stages of a person s experience with cancer. Spportive care means helping patients and their families cope with cancer and its treatment Yor key worker All patients attending the SMDT clinic will be appointed a key worker who is sally the clinical nrse specialist (CNS). Yor key worker will: Spport yo and yor family at all stages dring yor illness Provide verbal and written information abot yor condition and treatment Co-ordinate yor care Provide health edcation Yor key worker will work closely with the clinical nrse specialist at yor local hospital to ensre things go as smoothly as possible and provide better accessibility into the hospital as he or she can be contacted easily for help and advice. Please contact the key worker if yo wish to discss any aspects of yor treatment Clinical nrse specialist contact details: Clinical nrse specialist renal srgery: rfh.renalcancernrsing@nhs.net Holistic assessment Each individal has their own experience of cancer and how they feel it affects their lives. Being diagnosed with cancer can make yo feel many different emotions and experience npleasant physical symptoms. Holistic needs assessment (HNA) is a tool to identify areas of concern and to develop a personalised care plan, with onward referrals made as reqired. Effective HNA and care planning can help s to meet yor individal physical, emotional, practical, family and spirital needs in a timely and appropriate way. The HNA will be carried ot by the clinic nrse specialist at the most appropriate stage of yor treatment

7 Cancer conselling service When yo or someone close to yo has a tmor or cancer yo may have concerns, worries, confsion or feelings that distress yo. There is a conselling service at the Royal Free which yo can ask to be referred to. Yo might prefer to see a consellor / psychotherapist or psychologist nearer yor local hospital. Yo can ask yor CNS to refer yo to these services. They will know abot the services available. Macmillan benefits advisor If yo are affected by cancer, the last thing yo want to think abot is money. Having financial worries while dealing with a cancer diagnosis can be very difficlt. The Macmillan benefits advisor is available to offer spport and gidance. Yor key worker can give yo frther information and refer yo to the service if needed. The Macmillan Cancer information and spport centre The Macmillan Cancer information and spport centre offers p to date, good qality and appropriate information abot every aspect of cancer. If yo have qestions abot cancer yo can talk to an information specialist face to face in a relaxed informal environment. The centre is managed by a Macmillan Cancer information specialist who is spported by trained volnteers. The centre is available for anyone affected by or who wold like information on cancer, inclding relatives and friends. If yo are worried yo may have cancer or are adjsting to life after cancer treatment, they can help yo find the information and spport yo need. Yo do not have to be a patient of the Royal Free to access this service. Complementary therapy All patients can access the massage and reflexology service at any time dring treatment. The nrse or doctor can refer yo to this service. The interpreting service The interpreting service exists for patients who speak little or no English and patients who are deaf or hard-of-hearing and reqire commnication spport. A face-to-face interpreter is reqired for all new appointments and 24 hors notice is reqired. Please contact the patient navigator on who will organise this for yo. The centre is located on the grond floor in the oncology ot-patients department. If yo are nable to get to the centre yo can contact them by phone on ext or by cancerinfo@royalfree.nhs.k 12 13

8 How to get here We recommend that yo come by pblic transport if possible, as parking at the hospital and in the local area is very limited. Yo can download local walking maps as well as transport maps from the website. Bicycle parking is available otside the accident and emergency entrance on the lower grond floor. Pay and Display parking areas are available locally bt these are very limited and freqently fll. The Kidney and Urology Centre clinic can be fond on the 3rd floor ( see back of brochre for map) Rail Hampstead Heath station is near to the hospital and train services are operated by London Overgrond. The station is accessible to Oyster pay as yo go sers. Undergrond Belsize Park tbe station on the Northern Line. The Royal Free is slightly phill for arond 150 metres from the station. Bs Rotes: 24, 46, 168, 268 and C11 Travel information For detailed travel information and rote planning, see the Transport for London jorney planner or call Transport for London on Car parking at the Royal Free Or parking facilities are operated by a nmber plate recognition ticketless system. Yo can pay for parking by cash, card, and phone or by downloading an app. Payment points are located at both the Pond Street entrance and within Lawn Road car park. Tel: and follow the instrctions qoting site nmber The app can be downloaded on sing site nmber Charges are 3 per hor (no part hors) applicable 24 hors a day, 7 days a week. A limited nmber of parking spaces are available for kidney cancer patients and these are allocated according to need. The patient navigator can provide frther advice on booking one of these spaces. (Tel: ) Can yo be dropped off? Yes cars can drop and collect yo from the hospital entrance in Pond Street bt they cannot doble park or wait there for more than 20 mintes. Hospital transport Some people are entitled to hospital transport. If yo need hospital transport on medical gronds this is sally organised by yor GP for yor first visit. Yo are collected p to two hors before yor appointment time, so please be ready in plenty of time. When yo arrive at yor clinic, tell the receptionist that yo came by hospital transport so that we can arrange yor retrn jorney. If yo have any problems, call the hospital s transport office on Can yo claim expenses? If yo receive income spport, income-based jobseeker s allowance, pension credit, working tax credit or child tax credit, yo can claim back yor pblic transport fares to and from the hospital. This does not cover taxi services. Ask the clinic to give yo a fares claim form (which they shold fill in for yo). Take the form to the hospital s cashier office in the finance department on the lower grond floor. Please bring yor benefit book or other crrent evidence that yo are receiving the benefit and yor travel tickets

9 Additional information available Kidney Cancer UK Provides information and spport for kidney cancer patients and their carers James Whale Fnd for Kidney Cancer Helps to increase knowledge and awareness of kidney cancer Kidney Cancer Spport Network Helps patients family and friends to join together for information and advice Cancer Research UK Macmillan Cancer Spport Information on living with the practical, emotional and financial effects of cancer Qestions yo may wish to ask yor specialist Team What is a kidney tmor? What is the difference between a benign tmor and a canceros tmor? What kind of kidney cancer do I have? Do yo think my cancer has spread? What is the stage of my cancer and what does that mean? What treatment choices do I have? What do yo recommend and why? What risks or side effects are there to the treatments yo sggest? What type of follow-p will I need after treatment? Are there any clinical trials I shold think abot? Marie Crie Cancer Care London Cancer

10 Yo might also want to think abot yor qality of life while yo are having treatment. Will yo have to travel back and forth to hospital? What are the side effects of treatment? Can the side effects be treated? Along with these sample qestions, be sre to write down some of yor own. For example, yo might want to know how long it might take yo to recover so that yo can plan yor work schedle. Or yo might want to ask abot second opinions or abot clinical trials for which yo may qalify. How to get to the Royal Free Hospital Belsize Park Tbe Royal Free Hospital Fleet Road Haverstock Hill E Florist M&S Pond Street C B D Le Pain Qotidien Soth End Green A F A B C D E F Bs stops 24 C11, 46 C11, 46, 168 C11, 46, alight only 168 alight only To Heath Hampstead Heath (Overgrond) Ward 3 (East) Royal Free Hospital third floor Kidney and Urology Centre Reception Kidney and Urology Centre SMDT Clinic and waiting area L3 Theatre reception L3 Recovery Main lifts Staff only lifts ITU 3 Stairs 18 19

11 Hospitals that are part of the specialist centre for renal cancer at the Royal Free Barnet and Chase Farm Hospitals NHS Trst North Middlesex Hospital The Princess Alexandra NHS Trst Whittington NHS Trst University College London Hospitals If yo wold like a large print or adio version of this information, please ask a member of staff. Last reviewed April 2014