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This February meeting was well attended and there were two excellent speakers. The first was Chris Stookes, one of our members, who is a Yoga teacher and Therapist. He spoke about the benefits of movement and breathing for all, but beneficial to those having treatment or post surgery. Chris is pictured below ,right, his contact details are on the ‘Links’ page.

The second was Roberto Laza-Cagigas, (Left ) Senior Exercise Physiologist/Operations lead from Kent and Medway Prehab. This is a free service to all cancer patients before ,during and after treatment /surgery. Information includes diet, exercise and help with smoking, alcohol and mental health strategies. Contact details for the service are also on the ‘Links’ page.’


Urostomy Association 50th Anniversary Cream Tea

The Urostomy Association UK is based in Sheffield, last year was their 50th Anniversary and, a year late, they are celebrating their achievement with a series of cream teas around the country.

These events are being sponsored by Hollister and Salts Healthcare and subsidised by the Association funds. Starting in May in England, in June they will be in Scotland, in July various places in England and in September England and Northern Ireland, finishing in Wales in October.

We were able to attend the Canterbury event, as our nearest, at the beautiful Canterbury Cathedral Lodge Hotel in May 2022. What a stunning venue, we were in the Claggett Auditorium, with its beautiful wood panelling, arched ceiling and a balcony. The cream tea was lovely, finger sandwiches, cakes and scones with cream and jam, plenty of tea, coffee and bottled water available.

There was a short talk about the Association by Brian Fretwell, its aims and what support they offer; all the information is on their website, with printable downloads on all aspects of living with a stoma, and support for carers.

There were four stoma/urology manufacturers/ suppliers were there to show and demonstrate their products, and chat to the guests who made good use of their expertise, there were some free gifts and we were able to chat and discuss similarities and differences in the various products and needs of the end users.

Pelican Healthcare had a small selection of stoma bags and adhesive products, so many of the guests experienced the same leakage problems, their products contained Vitamin E to help protect the delicate skin around the area, including adhesive removal spray and barrier film wipes and spray. The website offers support from pre surgery through the early days to daily care.

Clinimed, on the next table, offered products containing Manuka honey, also designed to protect and nourish the delicate skin. Also on show were various flange extenders to increase the adhesion round the pouch for additional peace of mind. Charlie was happy to chat to his current supplier represented by Jennifer Tidbury, about their range and the benefits for him of the honey products.

Fittleworth Suppliers were also there, they had a range of items including Radar Keys, hand sanitizers and different bags for stoma accessories, the items you are encouraged to keep with you when out and about. There were plenty of leaflets and free pens.

The last supplier to arrive was from Hollister, also with a range of products and advice. They have an online ‘Ostomy Care Learning Centre’ for users and also for Healthcare professionals Although it was a small group, mainly from around the Kent coast, it was an opportunity to speak to other people, share the trials and experiences of a group of people, with the same medical issues, but treatments at different hospitals, though many of the post surgery issues were similar, i.e. leakage and the uncertainty of finding suitable public facilities. The length of time since surgery ranged from 3 to 14 years, and one other we spoke to had also had surgery by Da Vinci Robot though at Canterbury Hospital.

Charlie had found the Urostomy Association through the Fight Bladder Cancer Magazine, well worth subscribing to. They have a phone helpline, and although when he phoned they were not able to help straight away, very soon he had a return call with the contact details of the Chairman of Fight Bladder Cancer, who had also experienced the same issues, and offered to speak to him if he wanted to.

It was interesting to hear that Brian Fretwell, of the Urology Association had also experienced similar issues and the differences in the solution, Charlie was prescribed a drug that is no longer in use in NHS or United States, the alternative offered by the pharmacist seems to be helping, the treatment offered to the Chairman of Fight Bladder Cancer was different, and of course the advice for each was based on their own doctors knowledge of their patient and other medications prescribed.



 

In March 2021 the meetings also included a talk by a MacMillan nurse and Chris Stokes spoke about ‘Yoga for life, therapies’ followed by an open forum In April 2021 the meeting included ‘Tackle Prostate Cancer’ information followed by an open forum.

In September, the AGM was held at Gillingham Golf Club and welcomed existing and new members. Bob Carling spoke on ‘Focused Therapy for Prostate Cancer’ and mentioned particularly PROST8 the cancer charity. Details on the LINKS page. The group were also pleased to receive the proceeds of a sponsored bike ride by one of the members, Charlie Thorn, who had challenged himself to ride 200 miles during the month of August. The 210 miles, completed in 25 days raised £800. This was on his e-mountain bike. The proceeds were supplemented on the night by some extra cash donations from generous members.

The November meeting was also at the Golf Club, again existing and new members, with a cheque presented by a friend of Ray Smiths Masonic Angling Club, gratefully received.

The December Christmas Social event featured Matt Brooks singing, a raffle, bingo, a buffet and a little dancing, a good time was had by all.

Important message from Macmillan September 2020

To read the message please click here.

We are delighted to be able to host this webinar with Dr Steve Allen. For those of you who has heard Steve’s talk already on this subject will know how interesting and engaging this session is. Please do encourage your members to sign up.

As a webinar, attendees are not visible on screen and any questions are put forward anonymously – so we can ensure privacy and confidentiality.

You are invited to a Zoom webinar.

When: Sep 14, 2020 07:00 PM London

Topic: Erectile Dysfunction after Prostate Cancer Treatment Register in advance for this webinar:

Register in advance for this webinar:

https://prostatecanceruk.zoom.us/webinar/register/WN_y36hA2YeT8Sr9oOUO85GNQ

After registering, you will receive a confirmation email containing information about joining the webinar.

Webinar Speakers

Steve Allen (@Tackle Patient Representative and Prostate Cancer UK Volunteer) Steve has a firm belief that if you can understand how your body works, then you can understand more easily what can go wrong. This makes it easier to understand what may be able to help, and indeed why some treatments may not help you at all. These webinars will describe the 'medical' side of things in simple terms and draw upon his personal journey with both severe incontinence and sexual dysfunction

Places are limited so please sign up early. It will be available on demand after the session for anyone unable to secure a place.

Kind regards

Peter Harfleet

Mob: 07843 754215

Tel: 01634 388237

UROLOGY PATIENTS & CARERS - OPPORTUNITY TO INFLUENCE THE DEVELOPMENT OF THE PROSTATE PATIENT PORTAL

Hi All, We hope you and your families are well and enjoying the summer.

The Kent & Medway Cancer Alliance are looking to recruit 2 – 3 patients to help influence the development of the Kent & Medway Cancer Alliance Prostate Patient Portal.

The Cancer Alliance want to invite patients and carers to help them develop and test a new online system for prostate cancer patients to use after their treatment during their follow up care. We hope you will share your valuable time, experience and thoughts to support the exciting implementation of a new patient pathway that we are introducing across all Kent and Medway hospitals.

An online patient portal has been used for over five years at Dartford and Gravesham Hospitals (DGH) NHS Trust as part of their supported self-management pathway. We have worked closely with the team there to see how it can be developed across all cancer systems in Kent and Medway. We need and value your views on what you think of the online portal currently under development.

This will involve:

They will provide you with information on how to get on to the system that will be used for the virtual workshop, this will be MS Teams. If you would like to trial this system or talk through how the workshop might work please contact Tracey Ryan Macmillan User Involvement Manager at tracey.ryan1@nhs.net who will be very happy to answer your queries.

At the meeting you will be joined by nine other patients, some of you will have used the system at DGH and some will not.

The workshop will be led by Fay Fawke, Deputy Lead Cancer Nurse/Clinical Services Manager Lead Macmillan Urology-Oncology CNS, Dartford & Gravesham NHS Trust, who will explain the prostate cancer pathway and how an online patient portal is beneficial. John Kyle Implementation Consultant and Alex Warburton Designer, from Infoflex, the company that is developing the portal will show you how the patient portal system will work and how it will look.

They will explain more at the workshop but as background the aim is for the portal to support patients to access their own PSA blood test results remotely from a computer, tablet or smart phone. The portal will enable patients to communicate with the prostate clinical team about their wellbeing at a time that is convenient to them and without having to go into a hospital unless they request to, or the clinical staff suggest it appropriate.

If you are interested to take part in this work and please contact Tracey Ryan by 21st August tracey.ryan1@nhs.net

Please remember to access the Urology Support website for updates; https://urologysupportwestkent.co.uk/index.html

Kind regards Peter Harfleet

Mob: 07843 754215
Tel: 01634 388237

On behalf of the Urology Support Group committee we hope that you are all well and safe.

We thought it was important to provide updates that keep you informed in this fast changing and challenging situation.

Updates from the Urology Department

Medway Urology Nurses - as a result of the pressures on the NHS the Urology nurses have been relocated for the foreseeable future to support the Trust through this difficult time. If you want to contact them regarding treatment etc. please use the same contact number and email address and they will reply as soon as they can.

The fund raising event that Claire Blackman’s daughter was going to take part in to raise funds for Cancer UK and Prostate UK, was unfortunately cancelled and hopefully will take place when things are back to normal

Update on what is on offer from Macmillan

There are several methods of support for people living with cancer, family and carers including;

Please feel free to use these sources of support if needed.

Please help Guy’s and St. Thomas’s Biomedical Research team identify high-risk area in the UK, who is at most risk by better understanding symptoms linked to underlying health conditions and how fast the virus is spreading in your area by downloading the App and taking a 1 minute self-report daily. More information from; www.covid.joinzoe.com

Our Chairman Paul Rainer is available to be contacted if you are in a difficult situation and don’t know who to approach. He can be contacted on 07421 005985.

The decision on the Summer Social River Cruise will be taken towards the end of April in the hope that the Covid-19 situation has improved.

Finally please take care, keep well and keep sane.

Kind regards

Peter Harfleet

Mob: 07843 754215 - Tel: 01634 388237

Prostate cancer becomes the UK’s most commonly diagnosed cancer
- 10 years earlier than predicted.

Prostate cancer has become the UK’s most commonly diagnosed cancer for the first time, according to the latest¹ UK-wide statistics² shared by Prostate Cancer UK. This news comes 10 years earlier than previously predicted largely due to increased awareness of the disease in recent years.

Awareness was heightened by the charity’s announcement in 2018 that prostate cancer had overtaken breast cancer to become the third biggest cancer killer and high-profile individuals such as Bill Turnbull and Stephen Fry sharing their experience of the disease. This led to a huge surge in referrals for suspected prostate cancer that year, particularly in England.

The latest figures show that prostate cancer diagnoses have more than doubled³ over the last 20 years alone. This has seen prostate cancer overtake breast, lung and bowel cancer to become the most commonly diagnosed overall with 57,192 diagnoses according to latest annual figures. There are now around 400,000 men in the UK living with or after the disease ⁴.

The figures also show that a higher percentage of cancers were caught at the locally advanced stage (stage III),5 when the disease is far more treatable, showing that increased referrals have the potential to save many more lives.

However, this was accompanied by a similar increase in the proportion diagnosed with low risk prostate cancer (stage I). These cancers may never cause any harm, which could lead to more men experiencing the often life-changing side effects of radical treatments unnecessarily. It is therefore important that men diagnosed at this stage receive support to have their cancer monitored through active surveillance to help mitigate this.

Scientific research into new tests and treatments has meant that a man diagnosed in 2020 will have a much-improved chance of survival compared to 20 years ago. Despite this, there is still no screening programme for prostate cancer, as current tests such as the PSA blood test are not reliable enough at accurately spotting the disease. Better tests and scans would help bring us closer to a vital screening programme, to ensure all men’s prostate cancers are identified early enough when it’s still possible to cure.

The leading men’s health charity now warns that the Covid-19 crisis has put much of the research needed to tackle the disease at risk, and is calling for support to raise the millions of pounds the charity estimates is needed to get prostate cancer research back on track. Angela Culhane, Chief Executive at Prostate Cancer UK said: "The number of men with prostate cancer keeps rising and now for the first time ever, it has become the most commonly diagnosed cancer in the UK. We’ve reached this point much earlier than previously predicted, which is in part due to a big increase in awareness of the disease in recent years. “While it’s good news that more men have been having conversations with their GPs and being diagnosed earlier, it only serves to reinforce the need not only for better treatments which can cure the disease, but for better tests that can differentiate between aggressive prostate cancer that needs urgent treatment and those which are unlikely to ever cause any harm.  

“We need research now more than ever, which is why it really is devastating that so much of it has been brought to a standstill by the Covid-19 crisis. Accelerating research to recover from this major setback will cost millions, but at the same time we’re predicting an unprecedented drop in our fundraising due to the impact of the pandemic.

“That’s why we’re asking for the public’s support during this difficult time, to help us secure the future of prostate cancer research.” 

Prostate Cancer UK also warns that although diagnoses have been rising for many years,the Covid-19 crisis could cause many cancers to be missed, as the pandemic continues to reduce the number of referrals for suspected prostate cancer.  

Culhane continued: “We also know that the Covid-19 pandemic will have knock-on effects on diagnosis and treatment for prostate cancer for some time to come."
 
“But as services begin to return to normal, it’s important that anyone with concerns about their prostate cancer risk speaks to their GP or contact our Specialist Nurses – particularly if they have any symptoms. Men who are most at risk are those aged 50 and over, black men and men with a family history of the disease.”
 
Broadcaster and Prostate Cancer UK ambassador Bill Turnbull is supporting the charity’s fundraising appeal to restore research lost due to the Covid-19 crisis and develop a vital screening programme. He said: “It is really very humbling to think that by sharing my prostate cancer experience, I may have helped more men come forward to have those important conversations with their GP and ultimately get diagnosed sooner. 
 
“But with prostate cancer now the UK’s most commonly diagnosed cancer, what we urgently need now is the research to make sure that men get the best tests and treatments possible. Sadly, Covid-19 has interrupted so much of this crucial research, which is why I’m supporting Prostate Cancer UK’s fundraising efforts. It’s a difficult time for many of us, but anything you can do will go a long way to making sure we don’t lose momentum in the fight against prostate cancer.”  

Lauren Clark lost her husband, the England cricketing legend Bob Willis, to prostate cancer in December 2019. Joining the charity’s calls for more investment in research to develop better tests for prostate cancer, she said: 

“I know only too well the impact prostate cancer has, not just on the men who get it, but their wives, partners and families. This news just goes to show that there is so much that needs to be done, and no time to waste. 

“I think the PSA blood test can be a useful indicator for a lot of men, but it wasn’t accurate enough for Bob. We clearly need a better test to determine the severity of prostate cancer much quicker, so that men & families can understand sooner how aggressive or otherwise their disease is. 

“I want Bob to have a legacy, and that’s why I’m supporting Prostate Cancer UK’s campaign to get this research back on track and find treatments and tests that will help men like him in the future.” 

Prostate Cancer UK is also calling on the government to uphold previous funding commitments to prostate cancer research following the release of this latest UK data which shows the scale of the increase in diagnoses.  

Despite traditional fundraising activities being postponed this summer following the Government’s Covid-19 social distancing measures, the charity has a range of virtual activities available on their website that people can choose from to join and donate to the charity.  

Find out more about the impact of Covid-19 on research and donate to Prostate Cancer UK at prostatecanceruk.org/fundresearch 

Ends 

References 

1. Latest data refers to cancer incidence data released up to 2018 for England, Scotland and Northern Ireland and cancer incidence data released up to 2017 for Wales.  

2. UK-wide sources for cancer incidence data:  

England – Office of National Statistics (ONS) [www.ons.gov.uk]

Scotland – Information Services Division ISD [https://beta.isdscotland.org]

Wales – Wales Cancer Intelligence and Surveillance Unit (WCISU) 

http://www.wcisu.wales.nhs.uk]

Northern Ireland – Queens University Belfast, Northern Ireland Cancer Registry

https://www.qub.ac.uk/research-centres/nicr/CancerInformation/official-statistics/

3. 136% increase is calculated based on the % increase in prostate cancer incidence from England, Scotland and Northern Ireland from 1998 to 2018 (Incidence data not available for 1998-2000 or 2018 for Wales so was not included in this calculation).  

4. This figure is an estimation, based on 2015 prevalence data from Scotland, Northern Ireland, Scotland and Wales: 

Over 325,000 [325,777] men are living with and after prostate cancer in England (Public Health/ Macmillan partnership https://lci.macmillan.org.uk ) 

Over 27,000 [27,328] men are living with and after prostate cancer in Scotland (ISD Scotland -https://www.isdscotland.org/Health-Topics/Cancer/Cancer-Statistics

Around 21,000 [20,968] men are living with and after prostate cancer in Wales(Macmillan WCISU partnership –available at: https://public.tableau.com/

Over 10,000 [10,337] men are living with and after prostate cancer in Northern Ireland(Queens University Belfast, Northern Ireland Cancer Registry (https://www.qub.ac.uk/research-centres/nicr/CancerInformation/official-statistics/

Staging data from Public Health England: Ref: PHE publications gateway number: GW-1047 Cancer Research UK survival trends: https://www.cancerresearchuk.org/health-professional/cancer-statistics

About Prostate Cancer UK

About prostate cancer

“Jack” Frost

As 2019 begins to fade into the distance, I wanted to reflect on the life and contribution to Urology Support of James Frost, who sadly left this World on 24 October. A minute’s silence was held at our November meeting, in his memory.

I knew very little about James – least of all his real first name, as I knew him as “Jack” – though learned at his funeral service that he’d had a career in the Ministry of Defence (all be that hardly enlightening info in terms of what he actually did?).

Jack was Secretary of “MUSAC” - which later became US - for many years and in excess of the constitutionally stipulated term, precisely because he was so difficult to replace. And it was a privilege to serve alongside him, as Chair, for some of that period. I knew him to be well prepared/ organised for meetings, competent at briefing other Core Group members on developments (as you’d expect for a former Civil Servant) and summed up discussions well; he was not only articulate at meetings and concise in his minutes, but a clear and to the point letter writer. Not everyone is comfortable presenting in writing as orally, or vice versa, but Jack was talented at both. In fact, he was everything you’d want from a secretary!

Jack also possessed the almost unique skill of being able to find his way round NHS bureaucracy and had a sound knowledge of individual roles and responsibilities. My only adverse criticism was that he always seemed to me to underestimate the attendance at our general meetings, by reporting a headcount which seemed lower than what I’d seen from the front! I used to comment to him, he must’ve had a career in the police force! (Perhaps the military police, lol?) 

Jack organised and was responsible for the review of the terms of reference, which led to the change of focus by renaming our organisation and being not exclusively made up of people living with cancer etc. And it’s important to remember that when I presented the review result to the whole group, or when I presented any information at meetings, he’d invariably given me the key points to focus on, beforehand!

Our most useful achievement together, was meeting the CEO and Medical Director of the Medway Foundation Trust, along with the Prof (as we called him), to persuade them to commit to deploying da Vinci robotic surgery at the hospital. Jack prepared the ground for this meeting, by tapping Macmillan for knowledge and support. This reflected his approach on the group’s behalf throughout his tenure, his modus operandi being to develop a working relationship with the nurses, ensuring the Prof’s enthusiasm for the value and continued existence of the group was captured and utilised in our dealings with the key people in the Trust with whom we came into contact, many of whom themselves engaged with our meetings as guest presenters.

Mark Jones                                                                         

February 2020

 


There are five urological cancers:

prostate, bladder, kidney, testicular and penile cancer.

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