Southampton Kidney Cancer Patient Day 2014

3rd December 2014, Holiday Inn, Southampton.
This was the fifteenth patient day organised by the Kidney Cancer UK for English and Welsh patients and their families, and the first patient day to be held on the south coast. Turnout was good; more than 40 delegates came along to learn about the management and treatment of kidney cancer, directly from health professionals and experts. The quality of the speakers and the content of their presentations was excellent, and continued with the kidney cancer ablation theme of this year’s patient days with presentations from the UK’s leading centre for cancer ablation, Dr David Breen’s group in Southampton.
For a copy of the corresponding slide presentation, please click on the titles below:

• Systemic treatment for Kidney Cancer
• MANAGEMENT OF TREATMENT SIDE-EFFECTS
• Integrated Approaches to Cancer
• Kidney Cancer UK Patient Support
• Martin Everett – patient story
• Cryoablation

Systemic treatment for kidney cancer
Dr Matthew Wheater, Medical Oncologist from the University Hospital in Southampton, opened the day with an interesting presentation on the systemic treatment of kidney cancer. He opened his presentation with some UK renal cancer statistics, mentioning that there were 10,100 new cases of kidney cancer each year, it was more common in men than women, and the cancer has spread in about half of all patients when it is diagnosed. He went on to give a brief history of the treatment of renal cancer, mentioning that chemotherapy is ineffective, and immunotherapy, such as interferon-alpha and interleukin 2 (IL 2), has limited success.
Current systemic drug treatment for advanced kidney cancer is mostly targeted therapies, such as sunitinib (Sutent), pazopanib (Votrient), axitinib (Inlyta) and everolimus (Afinitor); although immunotherapies, such as IL 2 and interferon, are still used in a small minority of patients, despite severe side effects. The targeted therapies inhibit the growth of the tumour cells, and stop the development of blood vessels to the tumour, thereby starving it of nutrients and oxygen needed for growth. These drugs can shrink the tumour, improve symptoms, and extend life for about 2 years on average. However, they have some serious side effects, such as fatigue, hand-foot syndrome, high blood pressure, sore mouth and diarrhoea.
Dr Wheater then presented a fascinating case study to show the effects of systemic drug treatment in a 71-year old woman with renal cancer.
He concluded his presentation by discussing the role of surgery, especially for small tumours, and the future for kidney cancer drug development, such as immunotherapy (anti-PD-L1, anti-PD-1 and high dose IL 2), which enhances the anti-tumour activity of T-cells (immune cells), potentially leading to long-lasting responses. Immunotherapy, therefore, may offer new hope for kidney cancer patients.
The role of the Clinical Nurse Specialist and management of side effects to TKIs
Gus Seebaran, Uro-oncology Clinical Nurse Specialist at the University Hospital Southampton, described the role of a Clinical Nurse Specialist (CNS) as being the key worker for each individual patient; the main point of contact for information, emotional support and advice, and coordinating hospital services with the patient. The ideal time for a CNS to become involved with a patient is at diagnosis; however, this varies between hospitals.
He then went on to discuss the management of side effects to TKIs (predominantly sunitinib and pazopanib), and the importance of teamwork between the CNS and the patient in the identification of problems with the drug. Prevention or early intervention is important for side effect management. Dose reduction or cessation of the drug can be used to help manage severe side effects. Psychological side effects of a cancer diagnosis, such anxiety and depression, need a team working approach involving a multi-disciplinary team (MDT).
There followed an interesting discussion about access to a key worker/CNS and the variability between hospitals. This variability is as a result of the complexity of the system and the recent changes in hospitals towards team working and patient-centred care.
My kidney cancer journey – a patient story
Martin Everett spoke about his kidney cancer journey and his experience of cryotherapy in a very uplifting presentation. He was diagnosed with kidney cancer in September 2010 when he was in Addenbrooke’s Hospital, Cambridge for a liver transplant. He had already been diagnosed with liver cancer, but when he was in hospital they discovered a tumour on his left kidney. They decided not to go ahead with the liver transplant, and he was referred to Dr David Breen in Southampton to have radiofrequency ablation (RFA) to his liver tumour, and cryotherapy to his kidney tumour in February 2011. The double procedure was very successful and, as far as he knows, he is the only person in the World to have had both procedures done at the same time. The cryotherapy wound was a bit weepy to begin with, but he was back at work full time after 6 weeks. Unfortunately, in May this year his liver tumour returned, and it was successfully treated with RFA for a second time. He would not be alive today if it were not for Dr Breen and his pioneering technology, and the communication between the specialists in Cambridge and Southampton.
My kidney cancer journey – a patient story
Penny Hill gave a very moving account of her kidney cancer journey, which started 23 years ago this week. In 1991 she had her kidney removed and was diagnosed with secondary tumours on her diaphragm. At the same time, she also had a thoracotomy to remove a lobe of her lung that also had secondaries. Five years later, she was still learning to live with cancer; she had immunotherapy (IL2 and interferon), and counselling, and started a psychotherapy degree, which helped her deal with her fear of the cancer. Ten years later, she had her second thoracotomy operation and soon after that was diagnosed with primary breast cancer.
She investigated complementary therapies, such as meditation, visualisation, reflexology, and mistletoe, and changed to a dairy free vegan diet to help strengthen her immune system. But the kidney cancer kept coming back in her lungs/diaphragm, thigh muscle, adrenal gland, pancreas, and ovary. She consulted Martin Gore at the Royal Marsden for a second opinion, and was referred to David Breen in Southampton for ablation of the adrenal tumours (RFA) and cryotherapy to some kidney nodules. In total, she has had 5 thoracotomies to remove secondaries. After RFA to her adrenal gland, she is taking steroids, and her thyroid gland function has reduced, so she is now taking thyroxine too. She tried interferon-alpha, and then sunitinib, and has been on 25 mg sunitinib continuously ever since. She still has nodules in her pancreas and liver, and continues with psychotherapy sessions. She deals with her situation by carefully choosing whom to talk to about it; she doesn’t want everyone to know and doesn’t want them to sympathise with her, so she only tells close family and friends from whom she gets her support, especially her husband.
Integrated/complementary therapies for cancer
Dr Julian Kenyon works at The Dove Clinic for Integrated Medicine, where they integrate complementary therapies with conventional medicine. Dr Kenyon started his presentation by talking about the role of diet in cancer; diets do not cure cancer, but certain diets can make it less likely that we will get cancer. He recommended a Mediterranean diet; avoid red meat, milk and dairy, sugar, and soft fruit (because of the fructose). He advised patients not to take anti-oxidant vitamins, such as vitamin A, C and E, but to take pro-oxidants instead. Cancer patients also need high levels of vitamin D for good immune function, so vitamin D can be supplemented in the diet, if necessary. High dose intravenous vitamin C can also be used to treat cancer.
He went on to describe various inexpensive treatments to stimulate immune function, such as quercitin, found in apples and onions, and Immuflex (1-3, 1-6-beta glucan), found in fungi (mushrooms); anti-inflammatory products, such as krill oil and Boswellia serrate (Indian frankincense); and anti-angiogenic products, such as C-statin and green tea extract. He concluded by talking about the role of opiate (pain) receptors in cancer and the use of acupuncture, low-dose naltrexone and cannabinoids to help boost the immune system (naltrexone), and control cancer pain. Finally he mentioned the use of pancreatic enzymes and proenzymes injected directly into tumours.
He finished by saying that patients need to take power back into their lives and live life how they want to; anecdotally, patients who partake in integrated medicine seem to do better than those who don’t. He recommended a book called Being Mortal: Medicine and What Matters in the End, by Atul Gawande.
Patient support
Lee Marriott-Dowding, Team Leader – Patient Support for Kidney Cancer UK, highlighted the areas where the Fund can provide support for patients and their families, such as the Kidney Cancer Careline, the online patient forum, patient information, kidney cancer patient days, local support groups, and the patient grant scheme. She then touched upon areas where the Fund is representing kidney cancer patients, such as Patients Involved with Nice (PIN), the International Kidney Cancer Coalition (IKCC), and National Voices. She ended by highlighting the 2012 National Cancer Patient Experience Survey (NCPES) results, which showed that provision of understandable, written information is essential to enable patients to become active participants in their treatment and care.
Cryoablation for renal tumours
Dr David Breen, Consultant Radiologist from the University Hospital Southampton and Director of Cancer Ablation UK, gave an interesting explanation about his work with image-guided interventional oncology. This involves inserting a needle into a tumour to ablate (destroy) the tumour using very high or very low temperatures, while using CT imaging to guide the needle into position. Usually, ablation is used for elderly or unfit patients, or those who are not willing to have an operation. It can only be used for small renal masses, usually less than 4 cm in size. The National Institute for Health and Care Excellence (NICE) have issued guidelines for two ablative techniques; cryoablation and radiofrequency ablation (RFA).
Dr Breen mentioned that cancer is becoming ‘subclinical’; today’s imaging techniques can diagnose and characterise tumours in the range of 5-10 mm, before they cause any clinical symptoms, and most of the time tumours are detected incidentally on scans for other conditions. He talked about image-guided techniques, such as ablation and embolisation, as having the greatest untapped potential for the treatment of small renal masses.
Renal cancer incidence is increasing in both the USA and Europe, and mortality is also increasing in the UK and USA. Surgery has moved from open radical nephrectomy as the gold standard to laparoscopic partial nephrectomy, but nephrectomy can damage kidney function. Ablative techniques are ideal for small tumours (less than 4 cm), and are slowly increasing in use. Cryoablation is currently the best technique to use for renal tumours, because the ice ball surrounding the tumour can be clearly seen and the doctor can be sure the entire tumour has been treated; this is not the case for RFA. Recurrence rate is about 2% (which can be re-treated) and the metastatic rate for T1a tumours is about 1-6%. About 14-25% of small tumours (3-4cm) are high-grade disease.
Dr Breen concluded by saying that ablation is a low cost treatment with few complications, low morbidity, and can be a day case procedure that can be used effectively for the treatment of small renal tumours.
Benefits and risks of cryoablation
Dr Neil McGill, Consultant Anaesthetist at the University Hospital Southampton and Director of Cancer Ablation UK, closed the event with an interesting presentation on the benefits and risks of ablation for renal tumours. Cancer Ablation UK is a non-profit making organisation with a patient-centred website promoting ablative techniques for the treatment of tumours. The team has over 15 years experience of cryoablation, RFA and microwave ablation, and the largest published data set in Europe. Dr Breen is the main operator and a global leader in image-guided interventional oncology.
Dr McGill mentioned that the decision between ablation and surgery is dependent on tumour factors (size, location, spread etc.) and patient factors (age, health, willingness etc.). Patients often ask whether ablation is safe and effective, and what is involved. Ablation has been proven to be as safe as partial nephrectomy, if not safer, and was approved by NICE in 2010. There are very few complications, urinary retention be the most common. However, data to prove its effectiveness is scarce, and is being addressed in the CONSERVE study.
Patients can expect a shorter stay in hospital (1 day, not 3), a quicker return to work, less pain, and better preservation of kidney function. Overall, quicker return to normal life and reduced costs to the NHS. The use of ablation is not widespread because of a lack of trained operators, surgical reluctance in some parts of the country, the way NHS budgets are set, and lack of a randomised clinical trial to prove efficacy.
Currently in Southampton, ablation is considered for small tumours less than 45 mm, recurrent tumours, situations where preservation of renal function is paramount, patients who want to get back to work quickly, very elderly or frail patients, and those with heart or lung conditions.
Dr McGill finished by saying that the way forward is collaborative working with patients, health care professionals, family members and patient organisations to help patients access new and innovative treatments for their cancer.