Future meetings and fund-raising
June 2008

The June meeting began with welcome news about the bladder scanner appeal. The University of Brighton Student Union had donated £600 from their Raise and Give Week. The support group was one of four charities to benefit from the fund-raising.
  The speaker was unable to attend and so the occasion was used to plan future meetings and fund-raising events. Ideas for the format and style of meetings were discussed. A variety of responses were forthcoming but people generally felt the format was satisfactory and met their needs for information delivered in a relaxed and friendly atmosphere. It was decided to re-launch the newsletter in time for the sixth anniversary of the group in September.
  The meeting concluded with tea and coffee and another excellent raffle which raised £25.00 for the scanner appeal.

Cancer drugs
July 2008

Kingsley Wildman, Macmillan Pharmacist for the Sussex Cancer Network spoke at the July meeting of this local prostate cancer support group. He began with an overview of prostate cancer including risk factors, diet and treatments. He then discussed hormonal therapy in detail including side effects such as hot flushes and weight gain.
  There was timely discussion around the cost of cancer drugs. Also, a reminder from Macmillan Cancer Support that Dr Mike Richards, the National Cancer Director, is seeking opinion on who pays for continued cancer treatment if a drug is purchased privately.
  Kingsley was thanked for an informative presentation. The meeting concluded with tea and coffee and another excellent raffle which raised £25.00 for the bladder scanner appeal.

Updates: Prostate Cancer Support Federation, PCaSO, Prostate Matters and Sussex Cancer Network
September 2008

September saw the sixth anniversary of this prostate cancer support group. Roger Bacon, Prostate Awareness Campaigner, was the guest speaker. He gave an update on the Prostate Cancer Support Federation and other topics.
  Roger first provided an overview of the development of the charity PCaSO Prostate Cancer Network of which he is an active member. He explained how the charity is managed by volunteers and involved in a number of initiatives. He then spoke about the Prostate Cancer Support Federation which comprises a number of organisations collectively seeking a national voice on prostate cancer and its diagnosis and treatment. Prostate Matters is now the national newsletter of the federation.
  Following a short break for tea and coffee, the meeting reconvened to hear Roger talk about his role with the Sussex Cancer Network. He explained in detail the structure of the network and how he participates as a patient representative. He was thanked for an interesting talk providing much useful information for group members.

Urology investigations suite
October 2008

Sister Rebecca Rushton was the guest speaker. She provided an interesting update on the work of the Urology Investigations Suite. She explained how new equipment storage had allowed the department to better use the facilities and extend the opening times.
  Rebecca also explained changes to improve the patient experience and cut down on form-filling and having to wear hospital gowns.  She invited comment on what could be further improved for those visiting the department. She also elaborated on the teaching carried out by the nursing staff to assist carers as well as patients with the management of longer term catheters.
  Tea and coffee followed in the usual manner allowing people time to chat and browse the extensive array of leaflets and information for prostate cancer.

2009

A personal account
January 2009

The January meeting saw another generous donation for the portable bladder scanner appeal. Chris Cutting and Dawn Bamforth presented £1,110.60 in memory of Bob Cutting. Both were keen to maintain the momentum of fundraising and prostate cancer awareness. The meeting therefore turned its attention to planning events for Prostate Cancer Awareness month in March.

The scheduled talk on abiraterone had to be postponed, and the group heard a personal account of one man’s cancer journey. Six years after radiotherapy, Arnold Goldman has to make a decision about new treatment because his PSA has begun to rise again - the possibility of HIFU or hormone therapy - e.g. Zoladex or possibly the new drug degarelix, which is just becoming available - or continued monitoring. He described the options, the potential benefits and disadvantages and he'll update the group when he has seen his consultant again and reaches his decision.

Prostate cancer and bladder control
February 2009

The guest speaker, Mr James Moore, locum consultant and a specialist in reconstructive surgery for female urology. He began by looking at the function of the bladder and how it stores urine under low pressure and empties when we decide it is convenient. He showed diagrams of the male and female urinary tracts, emphasising the importance of the proximal and distal sphincters and the pelvic floor. The bladder can be continent with only one sphincter. Micturition, the process of emptying the bladder, can be affected by filling and emptying symptoms:

Filling

• Frequency – more than eight times a day is abnormal

• Nocturia – passing urine more than once a night is abnormal

• Urgency

• Incontinence

Emptying

·  Hesitancy

·  Poor stream

·  Dribbling

·  Bleeding

Urinary symptoms in men are mostly due to Benign Prostatic Hypertrophy (BPH) which increases aged 50 +. It does not mean these men will have prostate cancer but the condition does cause the PSA level to rise. There is a ‘grey area’ when the man experiences urinary symptoms and his PSA test is raised. When is the best time to biopsy the prostate gland? Indeed, when is PSA testing appropriate? Is it about age or because it will make a difference to treatment options? In reality, most men get a PSA test.
  Mr Moore then considered the treatment options for prostate cancer; active surveillance, hormonal treatment, surgery and radiotherapy. All have their side effects. With radical prostatectomy transient incontinence is common, persistent incontinence less so. Pelvic floor exercises may be the best option to correct this side effect. Surgical options are possible. This is Mr Moore’s area of expertise. A bulking agent can be placed in the urethra. This might be collagen but tends to get absorbed requiring a repetition of the procedure. An artificial sphincter is possible which is permanently inflated with water. This is like a ‘foreign body’ surgically inserted and requires an implantable button to be squeezed. This moves the water from the sphincter to the balloon and allows the urine to drain out. A ‘male sling’ is also possible to improve the continence of the sphincters.
  Radiotherapy will cause cystitis in 5% of cases, urge incontinence in 5% of cases and bleeding in 5% of men. These symptoms tend to resolve on their own or with medication. Brachytherapy requires careful selection as it will enlarge the prostate. The flow is usually good afterwards with few symptoms.
  Mr Moore then took some questions from the audience including one on news of a urine test to differentiate the ‘tiger and pussycat’ type prostate cancers. This is the HPCA₃ test comparing free to total of the amino acid sarcosine. A discussion followed in respect of genetics and prostate cancer.
  Mr Moore was thanked for a very informative talk and then the meeting broke for tea and coffee. During the break, Mary and John Carden organised the raffle with six prizes and raised £25.00 for charity funds.

Graham Hatfield confirmed plans to change charity from the Prostate Cancer Support Association (PSA) to PCaSO in light of the PSA parent charity likely to fold in the summer of 2009. Discussions were in progress to make this transition as smooth as possible.

Treatments and Trials
March 2009

Dr Fiona McKinna, consultant oncologist, was welcomed as guest speaker. She explored areas of treatment and research and invited comment and questions from the audience.
  The first area discussed was the use of massage to improve wellbeing.  There is money for a research project on the use of massage in cancer patients. It is particularly good for back pain. She encouraged the men in the audience with prostate cancer to use the facility by booking appointments on a Tuesday morning through Sister Rose Errington (extension 3832 at Eastbourne DGH).
  Dr McKinna then addressed abiraterone, a hormonal treatment affecting production of testosterone. It is currently used for hormone-resistant prostate cancer and seems to be having an effect, but the media reporting of the drug referred to a trial carried out on only 20 patients. A big trial is currently recruiting through the Royal Marsden Hospital to examine the effect of taxotere with or without abiraterone. Another arm of the trial is looking at the effects with steroids added. Patients must have already had chemotherapy. Abiratirone drug is not licensed in the United Kingdom other than for use within a trial.
  Dr McKinna then elaborated on other trials for prostate cancer treatment in the Clinical Investigations Research Unit. There are a number of areas of activity with the South East region. The Royal Marsden Hospital undertakes the drug trials for prostate cancer. Vaccine studies are carried out by oncologist Dr Panda at Guildford.
  In Brighton, the early CHHIP study is running which is exploring the use of radiotherapy for treatment. CHHIP (Conventional or Hypofractionated High Dose Intensity Modulated Radiotherapy) is a national trial which randomises patients into three groups. The two treatments being studied are men having a longer duration of radiotherapy over 7.5 weeks as opposed to a group having shorter therapy time but higher dose over 4 weeks. Higher doses could be advantageous in terms of effectiveness but also mean the man has to spend less time undergoing treatment.
  The STAMPEDE trial is examining advancing or metastatic prostate cancer. It has five arms which are randomised. All patients get hormone treatment. It includes men who have previously had treatment and whose prostate cancer is now recurring and spreading, and men whose prostate cancer has already spread at time of diagnosis.
  The VENICE trial is looking at the effect of taxotere with or without aflibercept on epidermal growth factor receptor (EGFR). Over activity of EGFR has been associated with tumour growth.
  The RIB trial randomises patients into two groups. It is a multi-centre trial looking at single dose radiotherapy compared to Ibandronate for localised metastatic bone pain. Ibandronate is a biphosphonate associated with treating osteoporosis to strengthen bone and prevent its breakdown.
  Finally, Dr McKinna discussed the UK Genetic Prostate Cancer Study (UKGPCS) which is looking at familial links. It is being conducted at the Royal Marsden Hospital and following up any family with three of more cases of prostate cancer at any age, single cases of prostate cancer diagnosed before the age of 60 and affected sibling pairs where one of the men has been diagnosed before the age of 65 years. The idea is to build a large blood and tumour DNA bank so that the prevalence of the prostate cancer gene(s) (when identified) can be ascertained.
  Dr McKinna was thanked for a very informative talk. After some time for further questions, informal discussion continued over tea and coffee.

The meeting was reminded of the next fundraising and awareness raising sessions, namely The Big Breakfast on Friday 13 March 2009, the stand in the foyer of the DGH between 16 and 20 March and the quiz at Westham Village Hall on Thursday 19 March 2009.

Progress Review 
April 2009

The Eastbourne support group is changing! From 1 May 2009, the group will be part of the national Prostate Cancer Network, a much larger charity championing the needs of men with prostate cancer and their families and friends.
  The April meeting was an opportunity to review progress with prostate cancer awareness month, the first time the national initiative has run for a whole month. New faces were welcomed as the March events were reported and celebrated; ‘Big Breakfast’ at The Langham Hotel, bucket collection at Eastbourne Borough Football Club, display in the hospital entrance, quiz at Westham Village Hall and a bungee jump in South Africa.

Cancer Reform Strategy: earlier diagnosis and communication skills
June 2009

June’s meeting took a slightly different direction when the speaker was unable to attend due to illness. The group used the time to discuss aspects of the Cancer Reform Strategy, in particular earlier diagnosis of prostate cancer and communication skills. It was also an opportunity to hear the latest on the fundraising activities.
 The sponsored aerobathon had taken place since the last meeting. Over 70 people took part in the event on 9 May 2009 in Eastbourne Town Hall organized by Jo Matthews of Rosemary Conley Diet & Fitness Club (E/B) Ltd. The two hour non-stop aerobics session led by Jo and two other instructors raised a total of £4,259.41 for PCaSO. Two members from the Eastbourne Support Group participated but were keen to acknowledge the efforts and enthusiasm of all the other participants.

Cancer Journey update
July 2009

The final meeting before the August break began with the good news that the fundraising target had been achieved. In less than eighteen months the group raised £18,000 for a portable bladder scanner and a robotic camera arm for laparoscopic surgery.  

Jane Gambrill, founder of Cancer Journey, the cancer information signposting service was welcomed as guest speaker. She provided an update on this "one stop shop" offering help and assistance so that people can access correct information. The website is up and running and easy to use. E-mail enquiries are also possible, and telephone lines are open between 10.00am and 4.00pm, seven days a week including bank holidays. Helpline: 0303 333 0003.
 Jane explained that she had been a carer to her 47 year old brother Jeremy.  He died seven years ago from an aggressive form of prostate cancer but had outlived his prognosis.  She said that it was difficult to know where to go to get information.  You don’t know what you don’t know!  She felt compelled to do something for carers and so started a "journey".
 Jane was thanked for her inspirational talk which was followed by time for informal discussion over tea and coffee.

See also April 2008.

Chris Cutting suggested wives and partners might like to meet at other times for mutual support over coffee and a cake.  She is keen to see a local group develop similarly to the PCaSO wives and partners group running in West Sussex.

Fundraising and plans
September 2009

The September gathering began with a recording of the fundraising bungee jump earlier in the year.  Rob Gellatly, who made the sponsored jump on 21 March in South Africa, came along to the meeting to show the DVD and explain the experience. An amazing event, Rob said he would do it again! The group thanked him for the funds raised toward the robotic camera arm for laparoscopic surgery and for the opportunity to see the film footage.

The meeting also considered plans for next year’s Prostate Cancer Awareness month and the recent move to the PCaSO charity.  Copies of the local Eastbourne newsletter were made available to keep members up to date.  The group is looking for a new sponsor for the quarterly newsletter and would welcome any offers of support with costs.

Family Support Service
October 2009

Karen Aylward, Macmillan Family Support Worker, was welcomed as guest speaker to the October meeting. The Family Support Service is a fluid and organic service complementing the work of health care clinicians to provide emotional and psychological support for people with cancer and those affected by cancer.

Karen said counselling is a "talking therapy" and not for everyone, but so far she has received 200 referrals, 70% of whom are patients and about 30% family members. Family members often feel helplessness. She explained the referral process and plans to move to self-referral.