The Quarterly Newsletter of PCaSO Prostate Cancer Support

The Quarterly Newsletter of PCaSO Prostate Cancer Support

Updates The Quarterly Newsletter of PCaSO Prostate Cancer Support Organisation Dorset • Hampshire • Sussex & surrounding areas Radium 223 The PROACTI...

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Updates The Quarterly Newsletter of PCaSO Prostate Cancer Support Organisation Dorset • Hampshire • Sussex & surrounding areas

Radium 223 The PROACTIVE project PACE B trial Patient story Brachytherapy Healthy on hormones Branch News

Issue No. 58

February 2017

Winchester Cathedral by Peter Weir

Executive Committee

Sussex Branch Committee

Chair: ([email protected]) Roger Bacon  01903 775783

Chair: Roger Bacon (Rustington Group)  01903 775783

Hon. Secretary: ([email protected]) David Hurst  01798 875758

Treasurer: Vivian Miles (Chichester Group)  01243 814129

Hon. Treasurer: ([email protected]) Vivian Miles  01243 814129

Secretary: David Hurst  (Pulborough Group)  01798 875758

Membership Secretary: ([email protected]) Geoff Bailey  01962 713579

Debbie Hatfield  (Eastbourne Group) 01323 638021 Christina Cutting  (Eastbourne Group) 01323 641513 Barry Cocum (Brighton Group)  01273 387371 John Proctor (Bexhill Group)  01424 532866

Hampshire Branch representative: Peter Weir 01489 892168 Dorset representatives: James Davis  01202 580436 ([email protected]) Allan Higgin Derek Pilling Federation representative: Allan Higgin  01202 691710

Founder: David Rowlands Medical advisers: Prof. Christopher G Eden, MS, FRCS (Urol) Dr Chris Parker, MRCP, MD, FRCR Dr Angus Robinson, MBBS, MRCP, FRCR Patrons: The Duke of Richmond and Gordon The Very Rev. Nicholas Frayling Baron Palumbo of Walbrook Bill Beaumont, OBE

Pastoral Counsellor: Nicholas Frayling Newsletter Editor: Tony Ball  01903 783540 Design: Colin Woodman Dorset Branch Committee Chair: Jim Davis 01202 580436 Treasurer: Barry Taylor  01202 696107 Brian Deacon (fundraising)  01202 487708 Derek Pilling (website) Ray Bona (publicity) Clive Duddridge (membership)  01202 693976 Catherine Woolford (speakers) Allan Higgin (PSA testing)  01202 691710 Hampshire Branch Committee

Non-residential courses in the South Coast area:

Chair: Vacant

1st & 8th March 2017 at Brookfield Hotel, Emsworth

Treasurer: David Harris  02392 795909

23rd & 30th March 2017 at Field Place, Worthing

Secretary: VACANT John Harmer (fund-raising)  02392 631599 Chris White (publicity)  02392 264042 Geoff Bailey (membership)  01962 713579 Nicky Annells (Fareham) 01329 843828 Peter Weir (Southampton) 01489 892168

PO Box 66, Emsworth, Hants PO10 7ZP

National Help Line:

0800 035 5302 www.pcaso.org Charity No: 1095439

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Penny Brohn have for some time now been running courses for anyone affected by cancer. The Living Well with the Impact of Cancer course is FREE and available for anyone living with cancer and their close supporter.

To book Email: [email protected] or Phone: 0303 3000 118 www. pennybrohn.org.uk

The opinions expressed in this newsletter are not necessarily those of PCaSO Prostate Cancer Support Organisation. All men and all cases are different and you should always discuss any changes to your treatments with your doctor and in the light of your own personal circumstances.

Radium-223 (Xofigo) therapy Bone metastases can be treated in a variety of different ways including painkillers, chemotherapy, external beam radiotherapy or Radium-223. Sometimes several of these approaches are needed. What is radium 223 Radium-223 is a type of internal radiotherapy treatment, a mildly radioactive form of the metal radium. It used to be called Alpharadin. Radium-223 is suitable for men with prostate cancer that has spread to the bones (advanced prostate cancer) and has stopped responding to hormone therapy. If there are cancer cells in more than one area of bone, radium-223 can work well to treat those areas leading to better pain control, an improvement in the quality of your life and longer survival. How radium-223 works A small amount of radioactive substance is injected into a

vein, only taking a few minutes to administer and behaves in a similar way to calcium and collects in the bone metastases. If there are cancer cells in more than one area of bone, the radium can work well to treat all those areas at the same time. Cancer cells are more active than normal bone cells and so are more likely to pick up the high energy radioactive particles which kills the cancer in the bones, but doesn’t damage surrounding healthy cells, therefore reducing the cancer cells and the pain that these can cause. The therapy is given as a course of 6 treatments, at monthly intervals. How safe is the treatment Some radioactivity will be present in the body for a while after treatment. The total amount is very small and gets lower each day until the next treatment. The effects of the Radium therapy are

limited to the areas in the body in which it concentrates, so it will not cause any harm to other people through contact. When radium 223 is used Radium-223 is available in England, Wales, Northern Ireland and Scotland for men who have stopped responding to hormone therapy but haven’t yet had chemotherapy. Or for men who have already had hormone therapy and the chemotherapy drug docetaxel. Possible side effects The side effects of radium 223 can include diarrhoea and sickness but these are generally mild. Sometimes the treatment can cause low levels of blood cells after a few weeks. This can lead to an increased risk of infection, anaemia, and bruising more than usual. So regular blood tests after the treatment are advisable.

The PROACTIVE Project at Southampton University When a prostate cancer patient is being monitored before possible treatment, or has been discharged after treatment, the NHS often has little to offer. Individual counselling or various forms of personal training might offer significant benefits but they are typically too expensive for wide scale use. Is there another way? One recent idea, developed at Southampton University and other centres, is to offer a tailored programme of mentoring via the Internet. This was the basis of the ongoing PROACTIVE study of “PROstate ACTIVE surveillance support”, its development started with a £10K initial funding from PCaSO and run by Southampton University Psychology Department under the leadership of Prof George Lewith.

With further funding from PCUK, a group of up to 60 patients who have entered active surveillance within the last year will be recruited to a pragmatic trail via their routine clinical care. The programme involves six weekly interactive web-based sessions developed at Southampton using the platform ‘LifeGuide’. They will also participate, with their partners, in up to three 90 minute group sessions, facilitated by a clinical nurse specialist and focusing on specific themes including lack of information, uncertainty, and anxiety/distress. The Southampton team have created a series of dialogues which will lead them through the basic steps of evaluating their own lifestyle, setting targets for

improvement, and monitoring progress towards their goals. The aim is to explore the feasibility of delivering a psycho-educational support intervention via the Internet, and the project will be deemed successful if it can be shown that this intervention reduces anxiety, improves well-being and educates the man in all matters concerning the prostate. It is hoped that it will reduce the number of patients opting for radical treatment based simply on anxiety, rather than a clinical indication that treatment is needed. Anxiety is measured using the Hospital Anxiety and Depression Scale (HADS) and an improvement of 10% will be considered significant. We hope to report on the outcome in a future article.   Geoffrey Sharman & Roger Bacon

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The PACE B trial Currently recruiting men with low and intermediate risk localised prostate cancer. Radiotherapy is a very effective treatment for localised prostate cancer. We now know that most radiotherapy courses can be completed in 4 weeks, rather than the historic 7.5 weeks, without any increase in side effects or reduction in cure rates. The PACE trial seeks to go one step further, testing the now standard 4 weeks of radiotherapy versus just 5 treatments of radiotherapy, delivered with very precise image-guidance radiotherapy machines. The 5 treatment radiotherapy, called Stereotactic body radiotherapy (SBRT for short) can be delivered on any IG radiotherapy machine, although there are some dedicated machines such as the Cyberknife that can deliver this. The 5 treatment doses are very precise and deliver a higher intensity, giving 7.25 Gy per dose compared to the standard 20 fraction treatment giving 3 Gy per dose.  There are 20 UK centres open for recruitment. In the south the trial is open in the Royal Marsden hospital in Sutton (Dr Tree) and Chelsea (Dr van As). Patients who have intermediate risk localised disease who are interested should ask their local oncologist in the first instance for details, although enquiries can be made direct to the PACE trial team by email to: [email protected] ac.uk Dr Alison Tree

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The latest edition of the “Knowledge Empowers” booklet is now available through the PCaSO branches

My ‘Patient Story’ I made a rare visit to my GP during 2009 for a check-up. I knew nothing of prostate cancer, so didn’t mention it. Neither did the GP. This was an opportunity missed. Your prostate is the size of a lemon; it should be the size of a walnut said my new GP during February 2013. I had mentioned “waterworks” problems. He suggested a PSA blood test. Result: a slightly elevated 5.2. I was referred to urology. (It’s worth mentioning that my GP did postqualifying training in urology.) A TRUS biopsy soon followed. Trouble-free. No-one seemed to expect a positive result (positive being generally bad in the medical world.) Bad news: prostate cancer found in 5 out of 12 samples, Gleason 4+4 = 8. Full staging of the disease required said the consultant. He gave me a PCUK booklet. Bone scan and MRI followed. You’re extremely complicated said another consultant. Suspected spread to lymph nodes. Possible bone mets in one arm. Next day an MRI to a humerus and chest x-ray, both negative. Biopsy of three lymph nodes was recommended. My impression was they would prove negative enabling early curative intent radiotherapy. Not so, all samples were positive. You will die of prostate cancer unless you’re run over by a bus first. The sky turned black. Why, said the consultant, is it that when I give this news to people I seem to be looking at two blank faces. Treatment would be hormone therapy and localised control radiotherapy. Oncology next stop. Before meeting the oncologist, I obtained a second opinion from another surgeon. The prostate MRI was unclear because it had been taken after the biopsy, not before.

This meant that the diagnosis was wrong as to the disease’s extent. The recent lymph node dissection ruled out a radical prostatectomy and lymph node removal which would otherwise have been possible: too many holes in the abdomen. Treatment path was the province of an oncologist, but could be IMRT radiotherapy with curative intent to the prostate and lesser treatment to the pelvic lymph glands. The consultant oncologist outlined the limitations of MRI scans, indicating that radiotherapy would not kill all the cancer cells in my prostate. This meant that I’d have to stay on hormone therapy for the rest of my life. More scans and meetings with other oncologists followed. Eventually curative intent IMRT was agreed with lesser treatment to the lymph node area. I also joined the STAMPEDE trial which included a clear programme for IMRT and a follow-up schedule of consultations over a 5-year period. No more queues in urology! There was good news in the early stages: PSA dropped from 5.2 to 0.3 after the first hormone injection. A CT scan during August 2013 showed no disease progression since the April MRI. A later scan showed tumour shrinkage. IMRT went well and PSA has remained undetectable since completion in May 2014. The diagnosis made me reevaluate my life. I decided to “put something back” and became PCaSO treasurer and became more active in my village. I also joined the Cancer United gym to improve fitness and ward off the possible side effects of long term hormone therapy. All in all, I’ve met many interesting people and feel better than I have done for years. by Vivian Miles

Brachytherapy at Brighton The High Dose Rate prostate brachytherapy service commenced at the Sussex Cancer Centre in March 2014. To date more than 100 men with prostate cancer have been treated. The service was set up with the assistance of the Urologists, Mr Tim Larner and Mr Charles Coker, but is now run by Oncologists Drs Ashok Nikapota and Angus Robinson, along with the brachytherapy radiographers and the Physics team. What it involves High dose rate brachytherapy involves temporary insertion of radioactive wires into the prostate to deliver a localised high dose of radiation treatment. The brachytherapy enables a higher dose of radiotherapy to be delivered to the prostate, whilst minimising the dose to the surrounding normal structures (rectum and bladder) and has been shown to improve outcomes for patients with intermediate to high risk prostate cancer. The majority of our patients receive brachytherapy in conjunction with

a shorter course of external beam radiotherapy. Our patient group is typically men with higher risk localised disease – the extent of cancer and aggressiveness based on grade, PSA level and MRI scan results. Some patients have been treated solely with brachytherapy (monotherapy), usually in the situation where external beam radiotherapy was otherwise contraindicated. Radioactive seed implantation brachytherapy is an alternative treatment usually used for patients with earlier stage disease as a monotherapy and for our Sussex patients is delivered by colleagues in Guildford. Evaluation We have evaluated our treatment and patient reported outcomes for the first 53 patients treated. One patient has developed recurrence disease which has spread beyond the prostate (He initially presented with a high grade and extensive prostate cancer). The other patients (98%) have no evidence of recurrent cancer at this stage. The majority of treatment related

Are you healthy on hormones? I was diagnosed with locally advanced prostate cancer and had 37 fractions of radiotherapy. I was also prescribed hormone therapy (Prostap) for life. So far I’ve had 16 injections. Men with advanced prostate cancer are also likely to be on hormones for life. Some effects can appear soon after starting treatment; including reduced libido, erectile dysfunction (ED), hot flushes, dry skin (itchiness), growth of man boobs, fatigue, cognitive impairment, mood swings and depression. I have ED; minor hot flushes that have reduced over the years; dry skin for many years, but that is now worse. Also mood swings in the run-up to PSA tests. The more worrying side effects are those that develop gradually,

creeping up on one by stealth. Increase in belly fat, loss of muscle mass and osteoporosis. I’ve come to accept ED (as my GP says, think of the alternative), but not the stealth effects. Self-management tasks to negate stealth factors are very similar to those that health experts encourage everyone to adopt. This ought to make it easier for those of us with PCa. 1. Vitamin D: I’ve cut out dairy, so take soya milk with vitamin D. 2. Diet: More oily fish, chicken, fibre, vegetables and less red meat. 3. Exercise: I hadn’t exercised for years, but Jan Sheward opened her CUFitter gym and I do resistance exercise there twice a

Some members of the Brighton Hospital Brachytherapy team

side effects were urinary, with discomfort and difficulty passing urine the most common, but are within the expected levels for this group of patients. All patients evaluated were either extremely satisfied or satisfied with the treatment received. We are continually evaluating treatment outcomes with a prospective data collection and have enabled telephone clinics to facilitate this. Our plans for future are to extend the brachytherapy service and move towards a day-case procedure for most patients. Dr Nikapota & Dr Robinson week. Belly fat has shrunk and muscle strength improved. Apart from physical benefits, the classes are fun. I also go to an aerobics class, but I seem to have no sense of rhythm! 4. Alcohol: A glass or two of red wine in moderation. 5. Fitness monitors: My other half swears by her FitBit. She really does walk more and climb more stairs. It keeps her motivated. So far, I’ve used the apps on my phone. Maybe I’ll get weighing scales that measures body fat. I wonder what other members do to mitigate the effect of hormones? Would a special seminar help or more focus on lifestyle issues during group meetings? Do let me know. Vivian Miles ([email protected])

BRANCH NEWS • BRANCH NEWS • BRANCH NEWS • BRANCH NEWS

Dorset Branch Report PSA Testing PSA Testing sessions (full blood samples taken using phlebotomists) were held at Ringwood on Oct 29 (60 men) and at Colehill on Nov 26 (53 men). Colehill was exceptional in that of all the men tested, only 2 had to be referred on to their GP – so a healthy place! Next session at Bridport on Feb 11 Other venues being considered for 2017 are Maiden Newton, Beaminster, Blandford and Sherborne. We may participate in an event being organised by the Christchurch Lions in March. Meetings The November meeting was the annual “Social’ — members enjoyed the Bingo run by Mr Richard Knott of Luscombe Valley Railway.

According to Richard Knott, there is a possibility that the LVR may re-open in July. After many years of successfully engaging eminent speakers in the field of prostate cancer for our bi-monthly meetings, we are now having some difficulty finding suitable new speakers. We just managed to get a speaker in time for our January meeting, for an interesting topic, the use of dogs in the detection of prostate cancer. For a future meeting, we may have a Q&A session between members, but we will also be seeking other speakers. Please keep an eye on the website for more information. Collections Tesco at Fleetsbridge on Feb17

Hampshire Report On 7th December 2016,  we had a very successful awareness and collection at Tesco in Havant where we handed out loads of ‘blue’ and ‘pink’ leaflets and collected over £900 in donations.  The ‘cohort’ certainly did a very good job. Further collections fixed for 2017 so far are:

A request from the Hampshire Branch Please will SOMEONE step forward and support your Committee. PCaSO is our Charity, but it can only exist with the help of all the members. For further information, please contact either Nicky on 01329 843828 email:[email protected] plus.com or any Hampshire Branch Committee member.

Petersfield February 2nd. Fratton Park February 17th & 18th Portsmouth. Anyone who would be willing to help with the awareness/collection dates please contact John Harmer.

PCaSO Hampshire Branch at Winchester Christmas Market Founded in 2006, the Winchester Christmas Market celebrated its 10th anniversary in 2016 inspired by traditional German Christmas markets, with over 100 wooden chalets brimming with festive goodies and festive foods, are situated in the Cathedral’s historic Close surrounding an open-air real ice rink, the market now attracts more than 350,000 visitors each year, over the four weeks of the event. Each year the Cathedral allows one chalet to be allocated to a different charity for one day, this year PCaSO Hampshire branch applied and we were allocated the charity chalet for our use on Sunday 18th December, so on a crisp winters day volunteers manned the chalet from 10am to 6pm. Those who took part found the hour or so spent “on duty” very worthwhile , distributing leaflets and generally discussing prostate matters with the more interested members of the public. Though our main aim was that this would be an awareness event, £223 was donated. A big thank you to all who helped out and gave their time at what is a busy period of the year. Hampshire Branch collecting at Winchester Christmas Market

Stuart Thompson remembered Stuart Thompson joined PCaSO in Aug 2011 having been diagnosed with aggressive prostate cancer and having received a radical prostatectomy in March 2010 and subsequent radiotherapy. Almost two years previously the AGM approved the Executive decision to reorganise PCaSO into Branches East, Central and West. The West branch was already up and running very efficiently and the East soon followed but difficulties were experienced in forming a Committee to run the Central Branch which during this time was run from the Executive Committee. Shortly after joining PCaSO Stuart volunteered to take on the role of chairman. The day was saved and a full Committee duly formed. This led to him joining the Executive Committee and becoming a Trustee of the

Charity and Deputy Chairman. We were all very grateful to Stuart who proved to be an enthusiastic and excellent chairman of the Branch and became involved in all activities of the Branch including fund raising, PSA testing and making donations to various bodies in support of the fight against this disease. Stuart was a regular weekend walker and in May 2012 undertook a sponsored walk of 83 miles along the Dales Way from Ilkley in Yorkshire to Windermere in the Lake District. It took a week to accomplish and he personally raised £600 for PCaSO. Attending funerals often means we learn what we didn’t know about someone we work with. Stuart was a boy racer as a teen riding a Vespa but later became an advanced motorist. In 1972, as well as acquiring a wife, he bought his first TR sports car. With most men the two are mutually exclusive. In 1979 the car was upgraded to a TR4A and he was group leader of the Wessex TR Group with many

examples of the marque at the funeral. And he was with Romsey Lions. And he worked for IBM and he had an MBA. So many conversations we never had. When Stuart joined PCaSO his PSA was still rising despite the treatments he had received. Members may remember the article Stuart wrote in the February 2015 issue of the Updates newsletter where he described the journey through a whole range of chemotherapy treatments all of which initially showed promise but subsequently failed. In the end this foul disease won and Stuart died peacefully in The Countess Mountbatten House in West End. As he says in his article, the chemo has changed his life a bit but has not changed his positive outlook. This was clearly the case and he continued to lead an active life and was, according to his brother, a serial holidaymaker with his wife Linda right to the last. He will be truly missed by us all. Geoff Bailey and David Hurst

Sussex Branch Report All the six Sussex groups have held meetings since the last newsletter and more are planned for the coming months. We are grateful for senior consultants and other busy clinicians being willing to give their time to come and discuss the current practices in local urology departments. The lively Eastbourne group has comprehensive details of their meetings on their excellent new website http://www. pcasoeastbourne.org.uk/blog/autumn-and-winter-meetings. On 9th February the Sussex Branch Annual General Meeting will be held at Eastbourne where a report of the year’s activities will be made. This will be followed by a talk by consultant urological surgeon Mr James Moore on ‘Restoring Continence after Prostate Surgery’. More PSA test events were held at Rustington and Telscombe in November and these took the total of men tested in 2016 in Sussex to 810 with approximately 10 per cent having a higher reading needing further investigation. More events are being planned for the coming Spring and Autumn, (see page 8). In addition to those listed it is hoped to have dates for events in Bognor Regis and Chichester during the year.

PCaSO Sussex Branch secretary David Hurst (centre) received a cheque for £2,000 from Bognor Hotham Rotary Club at the end of last year. The Immediate Past President, Nigel Hasted, (right) had chosen prostate cancer as the subject of his year of office and had chosen PCaSO as it was specifically local to the club. Also present was Dan Hansen (left) who had raised a substantial part of the amount during the year. The club are interested in helping with a PSA testing event that is being considered for this Spring.

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LOCAL SUPPORT MEETINGS

Venues

See right for venue details and inside front cover for contacts.

Dorset

February 2017

6th (Mon) Bexhill

Aspasia Soultati (cons.oncologist at Eastbourne DGH)

9th (Thur) Eastbourne

James Moore (cons. urologist) Restoring continence after surgery



Also Sussex Branch AGM

20th (Mon) Pulborough

Mrs Suzie Venn (cons.urological surgeon at St Richards) Specialist in urinary problems after prostate treatment

22nd (Wed) Chichester

Ann-Marie Marchant (Penny Brohn) Living Well with prostate cancer (2pm)

Bournemouth: St Marks Church Hall, Talbot Woods, BH10 4HY, Meetings start at 7.30pm Hampshire Otterbourne: Otterbourne Village Hall, Cranbourne Drive, SO21 2ET Meetings start at 7.30pm Waterlooville: Church of the Sacred Heart, London Road, PO7 7SR Meetings start at 7pm

March 2017

7th (Tue) Otterbourne

Hampshire Branch AGM

21st (Tue) Rustington

Patients Forum with Dr Robinson

29th (Wed) Talbot Woods Dorset Branch AGM April 2017

3rd (Mon) Bexhill

Mr Roger McPlial (Conquest Hospital, Hastings)

13th (Thur) Eastbourne

Siobahn Meaker (MacMillan physical activity proj.mgr.) Albion in the community

Sussex Bexhill: Health Centre, Bexhill Hospital, Holliers Hill, Bexhill, TN40 2DZ Meetings start at 7pm. Brighton: Macmillan Horizon Centre, Bristol Gate, Brighton BN2 5BD Meetings start at 7pm..

17th (Wed) Chichester

(Speaker tbc)

Chichester: Chichester Baptist Church, Sherbourne Road, PO19 3AW

19th (Fri)

(Speaker tbc)

Meetings start at 7pm

(Speaker tbc)

Eastbourne: Postgraduate Centre, Eastbourne District General Hospital,

May 2017

Waterlooville

23rd (Tue) Pulborough

31st (Wed) Talbot Woods (Speaker tbc) June 2017

6th (Tue) Rustington

(Speaker tbc)

8th (Thur) Eastbourne

Karen Aylward (MacMillan counselling services lead) Counselling service and Mindfulness awareness.

PSA Testing Events February 11th March 4th 18th 25th April 1st 1st May 13th 20th June 10th July 1st 8

Bridport (Dorset) Bournemouth, Knole Lodge, (Dorset) Rustington (West Sussex) Basingstoke Golf Club (Hampshire) Uckfield (East Sussex) Lymington (Hampshire) Hayling Island (Hampshire) [tbc] Christchurch (Dorset) Maiden Newton (Dorset) Fareham, (Hampshire) [tbc]

Meetings start at 7pm. Pulborough: Pulborough Village Hall, Swan View (off Lower Street), RH20 2BF, Meetings start at 7pm. Rustington: John de Bohun Room, Woodlands Centre, Woodlands Avenue, BN16 3HB, Meetings start at 7pm.

All groups need help to put the chairs out, make teas, run a raffle, etc. to take the load from the group leader. Please arrive early, maybe 30 minutes, and lend a hand. And remember the room has to be cleared up afterwards. Please.