We were established in July 2012 under the group name 'Haywards Heath Prostate Cancer Support Group' but rebranded in 2020 to cover a larger area and also welcome people from further afield.
We aim to:
Organise regular meetings, currently three times per year, according to the needs and wishes of our members.
Provide accurate and up-to-date information in co-operation with professionals but will not give medical advice or make recommendations
How we run:
We are not funded by the NHS and have a one off joining fee of £15.00 which helps to cover our running expenses payable by bank transfer to our account: Sort Code 30-67-72. Account 13701062
Or by Cheque made out to : Mid Sussex Prostate Cancer Support Group and sent to 50a Lewes Rd, Haywards Heath RH17 7SN
Please join here. .
‘Due to government guidelines we are not holding any face to face meetings until further notice.
However, we do have a Chat Room every Friday at 16:30 for members and guests to discuss treatment, side effects, hobbies and other topical subjects. You can join our WhatsApp group by sending a message to 07919949318
‘Every 2 weeks we organize a guided walk for our members and these dates are sent to members via personal emails. These walks are always fairly easy and quite short but do give our members the opportunity to get together outside.’
Ensure that we listen to one another, that we welcome everyone equally and that we make sure everyone participating understands and respects confidentiality.
Following our Zoom presentation Erectile Dysfunction by Dr Steve Allan, who was joined by Mrs Lorraine Glover a Psychosexual Nurse Specialist, many questions were asked by some of the 27 members present.
Lorraine referred to several videos of topics that were particularly relevant to Erectile Dysfunction, which a number of members had questions about, some more detailed answers are available here https://www.lorrainegrover.com/about-lorraine-grover/videosmedia/
A well used saying was USE IT OR LOSE IT!
Doctor Steve Allen
We were delighted to have two video presentations by Steve recently and the video of this and Steve's background can be viewed Here
“What has changed 10 years on from my diagnosis, and treatment pathways"
"PCaSo - Erectile Disfuntion"
Our meetings offer opportunities for those affected by prostate cancer, their wives/partners, families and friends to share experiences and to learn more about the treatment of prostate cancer and current research. Guest speakers join us to give up-to–date, valuable information and to lead discussion.
Doctor Angus Robinson
Video presentation by Dr Angus Robinson Here
Clinical Lead for Oncology team for Sussex
Clinical Oncologist with specialist interest in Urological and Upper GI cancers.
Andrew Hart - Uro-oncology Clinical Nurse Specialist
Response to Covid in Urology and Watchful Waiting Surveillance
Video presentation December 2020 Here
'Rosie Sadler - Albion in the Community
Keeping fit and physical activity throughout prostate cancer vidoe presentation Here
Nicky Robinson, Nutrition Lead and Services Lead, Penny Brohn UK,
MSc Nutritional Therapy, BA (hons), mBANT, CNCH
Nicky has a lifelong interest in the role of food as medicine and a passion for nutrition research. At Penny Brohn UK her role includes nutrition services development, evidence reviews, facilitating client education courses and nutrition team management. Nicky also has a private nutritional therapy practice, and in her earlier career worked at senior level in ethical business and international development, gaining extensive experience in the field of individual and community wellbeing.
This excellent meeting was attended by over 40 members, plus their wives, from places as far away as Long Island, USA. Nicky explained, in plain English, the research carried out over twenty years into various foods that help us keep ourselves fit, and more likely to live longer, by eating healthily. You can watch the video Here
Healthy Living Video Presentation
The meeting was attended by 38 members and guests form PCaSO and Isle of Wight. Watch the video Here
Our group hold a regular Chat Room for members to talk about life in general and any issues they may have with their Prostate Cancer before during and after treatment. We now open this to guests who have concerns about Prostate Cancer. In the first instance call 07919 949 318, send a WhatsApp or email Brian for further details.
We had an excellent presentation by professor Edd James from Southampton University on the subject of Immunotherapy for Advanced Prostate Cancer treatment. Attended by over 40 members plus partners, Edd described the future direction of treatment for our disease. See video Here.
Professor Chris Eden is a surgeon and describes a technique called Reziuts Sparing Surgery.
This uses Da Vinci robotics and has proven, in some cases,to be less invasive than laparoscopic surgery. It may be helpful for those on active surveillance to consider when their treatment decision needs to be made. View video here
Urology Macmillan Team Presentation
Our speaker meeting on October 14 2021, the first for nearly two years, was attended by almost 20 members and wives. Dan and
Anna, our friendly Clinical Nurse Specialists from Macmillan, gave an excellent presentation. They described the services
provided for us and how they help the many men coming through the system, and reiterated that their team is the first point of call for getting information. They also spoke about current treatment options with their related side effects, and how to deal with them.
The point of most concern is that more men are being diagnosed with T3 and T4 cancers, due to delay in having a PSA test. This means that the cancer has begun to spread outside of the prostate and is more difficult to treat. Can I remind you once again to please make sure your male blood relatives have a PSA test, and tell your friends too?
One of our new members, who had no symptoms, was found to have a high PSA. He told several of his friends to get a test, and as a result one has been found to have a high PSA, and another man has been fortunate to be diagnosed early with a lower T2 staging, making his prostate more easily treatable.
See the MacMillan team letter here