for the chronological sequence of meetings, read downwards in the left and then the right columns -  to see details or go to other websites, click on underlined words or dates

2002

Inaugural meeting
September 2002

We were delighted to have Angus Earnshaw, the founder of the Prostate Cancer Support Association charity, preside over our inaugural meeting and inform the group of the background to the PSA as well as his own cancer journey.
     A statement from Consultant Urologist Mr G Watson was read out to confirm support for the launch of the Eastbourne group.

PSA test
October 2002

Consultant Urologist Mr Peter Rimington spoke about the Prostate Specific Antigen (PSA) test, posing the question as to whether it was a blessing or a curse? He explained the importance of men being fully informed about the relevance of the investigation before agreeing to undergo the test.
     Many men in their later years have a raised PSA result which implies this is a "normal" finding. This does not mean that the individual will suffer with marked symptoms of prostate cancer. The key is for the PSA test to be used as an indicator of the progress of the disease so it therefore has more significance for someone already diagnosed with prostate cancer.

Internal communications
November 2002

This meeting considered the development of the group and the future format of meetings. A guest speaker followed by an open forum was suggested as the preferred option. With numbers increasing the issue of branch status and the need to establish a formal committee was discussed. Currently, the group is part of the Greater London branch.

Radiotherapy
December 2002

The group welcomed Consultant Oncologist Dr Fiona McKinna who spoke at length about radiotherapy for prostate cancer and how new machines and techniques could minimise damage to nearby healthy tissue and organs.
     Dr McKinna explained with illustrations how the beam could be shaped to treat tumours. She also described how some treatment plans now involved higher doses of radiotherapy over shorter periods of time.
     The audience used the opportunity to ask a number of questions about various treatment options, which continued over coffee and a festive fayre.
    See also October 2004.

2003

Urology nurse specialist
January 2003

Tessa Rodgers, Urology Cancer Nurse Specialist at the Conquest Hospital, Hastings explained her role saying it was effectively a link between the patient, General Practitioner and Urology Consultant. She supports patients through the "Cancer Journey" as they undergo various investigations, including staging scans, and treatments. She is there to listen, sometimes with patients on their own, other times with partners. She then went on to explain the roles of the multi-disciplinary team and the work of the Sussex Cancer Network.

Continence
February 2003

Jane Lucy, Clinical Nurse Specialist with the Continence Advisory Service from Eastbourne Downs PCT gave an interesting and often humorous talk on the delicate subject of incontinence. Jane began by explaining her role running clinics and teaching programmes as well as overseeing the incontinence pad home delivery service.
     She then described the structure and function of the urinary bladder, why men experience incontinence and what treatments and devices are available to manage symptoms.
     The whole group was encouraged to practise pelvic floor exercises under Jane’s careful but amusing direction and advised of their importance as part of a regular routine.
     Men can refer themselves to the service and have a scan of the bladder to see it has emptied after passing urine.

For an update on continence, click here.

Multi-disciplinary insight
March 2003

Caroline Leach, until recently a Clinic Nurse Practitioner in Urology, at the Middlesex Hospital spoke about the role of the multi-disciplinary team as envisaged by The NHS Cancer Plan.
     She began by asking each person, including partners, to identify one positive aspect about their experience of care and treatment and one frustration.
     She then continued with a presentation to explain the stages of the ‘cancer journey’ and the involvement of the team members, linking some of the responses to the stages.
     Caroline talked of the initial presentation, diagnosis and "tumour board meeting" involving other members of the multi-disciplinary team including the consultant oncologist. She briefly mentioned the treatment decisions stage, which may necessitate further scans and then the treatment itself, and the follow-up afterwards. She also presented some local statistics on cancer services that examined patients’ satisfaction with information and contact.
     After some time for questions, Caroline reminded the meeting that by 2005, no more than one month should elapse between diagnosis and treatment for prostate cancer and no longer than two months from referral to treatment. 95 more urologists were to be trained to address this requirement.
     For further information see the guidance for Healthcare services for urological cancers from the National Institute for Clinical Excellence - www.nice.org.uk

PCaSO - Prostate Cancer Network
April 2003

The Eastboume group welcomed David Rowlands and Jim Stansfeld, President and Chair respectively of the Prostate Cancer Network (PCaSO) to their April meeting. David provided a detailed and extensive account of the charity, founded in 1999. This active  organisation is committed to improving all aspects
of the care of people affected by prostate cancer and also provides a national helpline telephone service.
     PCaSO has also been a key player with a number of membership partnerships such as the Coalition against Prostate Cancer (cPc) and Prostate Charter for Action. The latter consists of a 5-point action plan, Because Men’s Lives Matter, endorsed by 18 major signatories.
     David concluded by explaining some of the newer treatments for prostate cancer including cryosurgery and laproscopic prostatectomy.

Consultant Urologist: question and answer session
May 2003

The group welcomed Mr G Watson, Consultant Urologist at East Sussex Hospitals NHS Trust, to the May meeting. He invited the audience to participate in a question-and-answer session. The relaxed and informal atmosphere encouraged questions on a variety of topics ranging from the role of heredity and the effect of diet, to improved treatment over the last decade and PSA testing to screen for prostate cancer. Whilst some answers can never be clear cut due to lack of current research and personal choice, Mr Watson was able to elaborate on some of the newer interventions including surgery and drug therapies. Discussion continued over tea and coffee.

Prostatectomy
June 2003

Mr Roger Plail, consultant urologist at the Conquest Hospital, Hastings was welcomed as guest speaker. He gave a detailed and interesting account of how he manages and counsels a patient for radical prostatectomy. With the help of some useful visual aids, he showed the position of the prostate and how surgery could be performed to remove the gland when cancer was present. He explained the pre-operative investigations and recovery after surgery, including treatment for impotence. Many men view this surgery as a cure for prostate cancer. After time for questions and reflection over tea and coffee, Mr Plail was thanked for his extremely informative talk.

Hormone treatments for prostate cancer: the psychological effect
July 2003

Joe Buckman, Research Fellow at the University of Sussex, was the guest speaker at the July meeting. He is part of the Cancer Research UK Psychosocial Oncology Group at the Brighton and Sussex Medical School. The group’s current projects include research into the communication skills of health care professionals as well as the psychological
effects of breast cancer. The present study investigating the psychological effect of  hormone treatments for prostate cancer is the only one in the country.
     Joe stressed that hormone treatments for prostate cancer are an established and effective intervention for a large number of men. The suitability of the intervention was not in question but whether it affected memory, perception and reasoning.
     The study’s data collection had been completed and the results are now being analysed. Some of the tests to assess memory and measure mood were illustrated during the talk and generated discussion as to whether recall of images and sequences at timed intervals would be any better at a younger age! Joe concluded his talk by answering questions from the audience. Further informal discussion continued over tea and coffee.

Eastbourne Downs PCT Cancer Lead GP
August 2003

Local GP Dr Hugh Thomas was guest speaker at the August meeting of this prostate cancer support group. As the Cancer Lead for Eastbourne Downs Primary Care NHS Trust, Dr Thomas began by explaining his own background and interest in researching the causes of cancer. He then continued with the terms of reference for the Cancer Action Group and elaborated upon some of the objectives. Some local statistics, including those for prostate cancer, helped illustrate the talk. Finally, he concluded with some thoughts on issues to be addressed for cancer patients and how solutions might be implemented. The audience was extremely appreciative of Dr Thomas for talking to the group. After some time for questions further informal discussion continued over tea and coffee.

Osteoporosis
September 2003

Local Osteoporosis Nurse Specialist Amanda Homewood was the guest speaker at the September meeting. Amanda’s role includes raising the profile of osteoporosis and also dispelling the myth that the condition only affects women and the elderly.
     Amanda stated that the strength of the bones is measured in Bone Mineral Density (BMD) and an adult can expect their BMD to peak at the age of twenty-five. 80% of BMD is determined by genes and the audience were invited to consider whether any direct relations had suffered from the "silent condition".
     Demographic studies showed that in the over fifty population, 1 in 3 women and 1 in 12 men could expect to be affected.
     Whilst men tend to have a better "bone bank" than women, a decline in testosterone would result in a decline in BMD and this is the direct association with prostate cancer. The female hormone oestrogen and the male hormone, testosterone are important components for a healthy bone structure.
     Amanda concluded by showing the audience some sample shopping items, which could be bought to sustain a high calcium (low fat) diet. Amanda was thanked for her talk and left some information for people to take.
     See also June 2005.

Clinical trials
October 2003

Oncology Research Sister Rose Errington was the guest speaker at the October meeting. Rose is employed by the Sussex Cancer Network and her post entails setting up and recruiting patients for some 25 local clinical trials concerning cancer care.
     Rose began by explaining the purpose of clinical trials. Sometimes it may be about trying a new treatment, other times looking at different combinations of existing treatments to help improve either outcome or symptom relief. She elaborated upon the conduct of clinical trials and the detailed action plan that forms the protocol. She also explained some of the research tools that are used such as questionnaires looking at quality of life and supportive care issues, and summarised the advantages and disadvantages of participating in a trial.
     She concluded by outlining three trials that are locally in progress for prostate cancer.
     Tea and coffee were served afterwards during which she answered further questions on an informal basis.

Seaford Cancer Support Group
November 2003

Roy Pye of the Seaford Cancer Support Group was the guest speaker at the November meeting. He began with a personal account of his own cancer journey having been diagnosed with prostate cancer in 1996, and then elaborated upon the activities of the Seaford group.
     Roy related how more men now attend the monthly meetings. The group provides information and practical help such as transport to appointments and support for carers. Some members also attend the Patient Forum meetings of the Sussex Cancer Network. Keeping in touch with group members and good advertising were two key themes.
     Roy then answered questions and discussion followed as to whether some of the strategies could be useful for the Eastbourne PSA group. He was thanked for his illuminating and eloquent account. Further discussion continued over tea and coffee.

Consultant Urologist
December 2003

Consultant Urologist, Mr Will Lawrence, was the guest speaker at the December meeting of this prostate cancer support group. He began by explaining the organisation of local services for the treatment of urological cancers in Sussex.
     With regard to prostate cancer, Mr Lawrence stressed that every one is different in terms of their experience. It is very rare in the under 55 age group. He elaborated upon some of the tests with the aid of diagrams. He explained how these are performed and their significance in terms of treatment options. Again, everyone is different and the decision would be extensively discussed with the patient dependent on not only the test results but also symptoms and side effects of treatments.
     Mr Lawrence highlighted the main symptoms experienced by men with prostatic problems. Some may be due to the natural enlargement of the prostate as men get older rather than a malignancy. He answered questions from the audience throughout the evening. The audience including a number of new and female members thanked him for his informative and helpful talk.

2004

Open forum
January 2004

Twenty people attended the first meeting of the new year. It was used to explore if the group was continuing to meet individual requirements for support and information. The consensus was positive.
     Marjory Hatfield provided a brief overview as to why the Eastbourne group was set up back in September 2002. She explained that her husband would have benefited from talking to other men experiencing similar treatments and symptoms.
     Arnold Goldman was thanked for his management of the group's web page,  www.PCaSOEastbourneastbourne.org.uk. Users had found the pages easy to read, useful and informative. Hard copies of information would continue to be available with possibly the production of a second newsletter.
     Dates for future meetings were set and it was suggested that occasional Open Forum meetings should be advertised in advance so that each participant has an opportunity to say what is pertinent to him or her.

Urology nurse specialist
February 2004

Alison Gidlow, Urology Nurse Specialist,  outlined the advantages of her role by focusing on various aspects of her new post in Eastbourne. First and foremost this concerns support for patients and their families. Continuity of care is essential together with the provision of information and psychological support. She elaborated how this could be done to ensure each person is supported through the journey from diagnosis to treatment and follow-up.
     Other aspects of Alison’s role focus on working within a multi-disciplinary team and liaising between members in both the hospital and community. She also spoke of the opportunity for maintaining her own skills and passing on this expertise to others. Alison was thanked for an interesting and informative talk. Questions and general discussion followed which continued over tea and coffee.

See also June 2004.

PSA tests, treatment options, research trials
March 2004

The March meeting of commenced with an update on local and national links. This included information about the proposed European Prostate Cancer Coalition and opportunities to represent patients in other local and national initiatives.
  The guest speaker was Mr Tim Larner, consultant urologist at Brighton and Sussex University Hospitals NHS Trust. He began by explaining the prostate specific antigen (PSA) test and the significance of the result. He then elaborated upon treatment options including radical radiotherapy, brachytherapy and radical prostatectomy. He provided information from research trials which had followed up patients over time and discussed preferences according to whether the cancer was low,  intermediate or high risk. As a surgeon, his particular interest is radical prostatectomy.
     Mr Larner answered questions from the audience about diet, new diagnostic markers for screening for prostate cancer and hormone treatments. Further informal discussion took place over tea and coffee. Mr Larner was thanked for his time and presentation.

Continence
April 2004

The guest speaker for the April meeting of this prostate cancer support group was Jane Lucy, Lead Continence Specialist Advisor from Eastbourne Downs Primary Care Trust. Jane began by updating the audience on service developments. The advisors are now based at Hailsham Health Centre. Clinics cover a large area but people can refer themselves and undergo an initial assessment.
  Jane reminded the group about aiming to have a daily fluid intake of between 1.5 to 2.0 litres of water. Using an anatomical model, she showed the position of the pelvic floor muscles. She explained what happens if these weaken, the reasons this may occur and the symptoms experienced. Pelvic floor exercises are sometimes recommended. Jane explained how these should be carried out and skilfully encouraged the group to rehearse under her supervision. She also showed the group a number of unobtrusive methods for managing incontinence. She was thanked for once again providing an extremely informative but sensitive talk, together with a selection of useful leaflets. Informal discussion continued over light refreshments.

Consultant Urologist
May 2004

At the May meeting, Mr Paul Callaghan, consultant urologist at East Sussex Hospitals NHS Trust, was welcomed as guest speaker. He began by saying he intended to provide an overview of prostate cancer and its treatment but it is the patient’s own urologist who is best placed for advising a course of action.
     He explained the vocabulary used in relation to tests carried out, referring to the Gleason score and grade and the Prostate Specific Antigen (PSA) test. Mr Callaghan then discussed the various treatments ranging from radical prostatectomy, radical radiotherapy and brachytherapy to hormone therapy and watchful waiting and some newer therapies undergoing research.
     The speaker concluded by discussing the function of the multi-disciplinary team which meets regularly to review patients and their treatments.

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Urology nurse specialist
June 2004

The June meeting of began with requests from various local and national organisations seeking user and carer information and involvement. Alison Gidlow, Urology Cancer Nurse at Eastbourne District General Hospital, then provided an update on her nurse-led clinics including the elevated PSA clinic. Alison outlined its purpose and format and said she also hoped to have the prostate cancer follow-up clinic running shortly. Both clinics facilitate treatment decisions in conjunction with the consultant so that men receive prompt and ongoing support. After time for questions and debate on how to ensure men newly diagnosed with prostate cancer are made aware of the group, further discussion took place over tea and coffee.

See also February 2004.

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Prostate Cancer Charity
July 2004

Georgia Diebel from The Prostate Cancer Charity was the guest speaker for the July meeting. Georgia is a Support and Information Specialist Nurse and began by providing some information about the Charity. It provides unbiased information and support whilst raising awareness about the prostate gland. It operates a national, confidential nurse-led telephone helpline and a team of "networkers" who are willing to talk to other men about living and being treated for prostate cancer.
     Georgia outlined the fundraising activities of the charity and how this has helped develop the Specialist Nurse Programme. Six posts have been established in the NHS. Postholders aim to set examples of good practice, gather evidence of improvements in practice and prove the value of specialist prostate cancer nurses.
     Georgia concluded by reminding everyone of the charity’s national annual event – Prostate Cancer Awareness Week held in March, and national conference on 9^th November 2004. She also took questions from the audience before discussion continued over tea and coffee.

Prostate Cancer Support Association update
September 2004

After a summer break, the September meeting provided an update on the national Prostate Cancer Support Association. Mr Angus Earnshaw, the charity’s founder and present chairman, and Mr Bryan Reed, the treasurer for the national organisation and Greater London Branch travelled from London for the occasion.
    Mr Earnshaw outlined some of the current issues facing prostate cancer support groups. He re-iterated that his vision for the charity has always been the patient perspective because it is run by people affected by prostate cancer. He stressed the importance of the national helpline and commented that many carers as well as patients use it for support. It is often wives who confide and seek help.
    Both speakers were keen to know what the Eastbourne group wanted from its national charity. After an explanation of the charity’s future plans there was time for questions before people continued informal discussions over tea and coffee.

Radiotherapy - equipment and treatment plans
October 2004

The October meeting of provided an update on new radiotherapy equipment and treatment plans. Consultant Oncologist Dr Fiona McKinna and Kate McBurney, Senior Radiographer, gave an overview and answered questions. (See also December 2002).
    Alison Gidlow, Urology Nurse Specialist at EDGH, also attended to invite participation in a local initiative called the Macmillan Patient Information Project. Prostate cancer patients are being asked the best way to provide information about diagnosis and treatment. A number of people present expressed an interest in participating in this development.

Prostate Cancer Conference feedback
November 2004

The November meeting gave two group members the opportunity to feedback on the first national prostate cancer conference which they had recently attended.
     It was organised by the Prostate Cancer Charity and entitled A Cause for Action: The Time for Change. A number of eminent speakers, including the National Cancer Director Professor Mike Richards, were present and covered various topics including treatments available and research in progress. The role of support groups and living with prostate cancer were two of the aspects addressed in the seminar sessions. The PSA Chairman, Angus Earnshaw, was a panel member for one of these sessions.
     The event was well-organised and attended by over 200 delegates. It had been a useful opportunity to discover more about other groups around the United Kingdom and talk to the people involved.

The professional as a patient
December 2004

Nigel Offen provided an illuminating personal account of his ‘journey’ with prostate cancer at the December meeting. His background as a surgeon, NHS manager and chief executive gave a different but vivid context with which many in the audience could equally identify. The talk entitled "The Professional as a Patient. Does it help?" recounted his experience of symptoms, investigations and treatment as well as questions he had for those treating him.
     Choices must be informed by understanding of those choices. Consequently, Nigel was keen to lend his support to the launch of The Prostate Cancer Charity’s TheVitalityIndex which is a decision aid for men diagnosed with locally advanced prostate cancer. He drew comparisons with breast cancer campaigns and the need to ‘raises voices’ for men with prostate cancer through pressure groups. After time for questions and comments, Nigel was thanked for his informative and personal account.
     Discussion continued over tea, coffee and mince pies.

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