Sunday, 25 February

Oxfordshire Prostate Cancer Support Group

Newsletter February 2018

THIS YEAR’S PROGRAMME

Your Committee has been able to attract a range of interesting speakers for group meetings in 2018.  So far, the agreed speakers are as follows:  Mondays 6.30 for 7.00 p.m. at Oxford Golf Club, Hill Top Road, OX4 1PF

5 March EGM/AGM with Mr Simon Brewster on fusion biopsy and MRI.  Mr. Brewster will explain how the new system improves clinical practice in diagnosis of prostate cancer. 

There will not be a raffle at this meeting.

23 April: Professor Karol Sikora from Rutherford Cancer Centre Thames Valley speaking on ‘Proton Therapy – the prostate conundrum’.  We are very fortunate to have such a distinguished speaker, an international leader in his field.  You can read Prof. Sikora’s impressive CV here: http://www.karolsikora.com/

11 June: Yun Wang, Prostate Brachytherapy ANP/ Radiotherapy Specialist Nurse from radiotherapy department, Churchill Hospital, on brachytherapy

Sunday 24 June: river cruise

10 September: Mr Steve Foley, consultant, Reading, on incontinence treatments

15 October: tba

As I wrote in the recent formal notice of the EGM/AGM, we are sadly back in the position of having no prospective Secretary this year.  Any last-minute volunteer would be warmly welcomed.  If not, our activities are likely to be slightly curtailed this year as responsibilities are shared between Committee members.

GEORGE GOLDSMITH

George will be stepping down from the Committee of OPCSG at the AGM on 5 March.  He has been closely involved as a Committee member since the group started seven years ago, and as Secretary of the group for five years he was instrumental in setting it up and making sure that the support systems worked.  He has provided invaluable information, help and advice to me as Chairman (and occasionally a shoulder to cry on!)  Not only I but all our members owe George a debt of gratitude for his tireless work for OPCSG.  Take it easy now George – and if you know him, you will know there is no chance of that! 

(But we shall still have a Goldsmith on the Committee since brother John, although giving up the Treasurer post, will still be organising our external events, a role he has fulfilled for several years).

VOLUNTEERS TO TALK TO ENQUIRERS

Just about the most important service offered by OPCSG is to put new enquirers, most often newly diagnosed men, in touch with others who have experienced the treatment they are considering.  We have a list of volunteers who are kindly ready to take referral calls.  As time goes by, it is longer since most of these volunteers had their treatment.  if you have been recently treated, would you consider adding your name to the list as ready to talk to men facing the same treatment?  We are particularly looking for a man with recent experience of brachytherapy.  Please get in touch if you feel you can help.

NEWS FROM MEMBERS

  • One of our members has raised the question of access to PSA test results.  Having had a PSA test at the Churchill, he went to his surgery a few days later to get the result. The surgery staff were adamant that they did not have access and that he could only get the result from the Churchill itself – which is very difficult to do.  Having investigated a bit, I have found that it is not official policy from the Churchill to withhold results from surgeries, but practice seems to vary in the surgeries.  Personally, I am now able to access results via the online Patient Access service two days after the test.  What is your experience?  Please send me your comments and I’ll follow up in the next Newsletter if there is much to say.
  • Another member has some spare male pads which might be useful to someone else.  He writes: ‘The brand type of the pads is id for men level 3. Around 4 packs of 14.’  If you are interested, please let me know and I’ll put you in touch with the member making the offer.
  • Member John Evins writes that his son and daughter-in-law are running the Brighton Marathon on Sunday 15th April in aid of Prostate Cancer UK.  If you would like to sponsor this worthy cause, please visit http://www.justgiving.com/stevebeckymarathon.

THREE REQUESTS FOR HELP WITH TRIALS AND RESEARCH

  • Dr Philip Camilleri, Consultant Oncologist at the Churchill Hospital, is helping develop an app that could be used on smartphones or tablets that might help people navigate their way through life after therapy for cancer.  The app will cater specifically for prostate cancer survivors.  He has asked me to disseminate this very short survey of just 10 questions to members of this group.  If you would like to help Dr Camilleri by filling it in, your answers will be anonymous but will add to the overall patient view.  https://www.surveymonkey.com/r/QNVWSZQ
  • Via Tackle, the Federation of Prostate Cancer Support Groups, we have received this message about another research project from the Institute of Cancer Research – share your story.  Please reply directly if you feel you can help:
    • The Institute of Cancer Research (ICR) has discovered and developed many of the cancer treatments widely used today, but we want to raise greater awareness of the advances our researchers are making. In order to do this, we are getting in touch with people who have been diagnosed with cancer, or the family and friends of those diagnosed, to share their stories with us. We are especially interested in talking to men who have been diagnosed or are undergoing therapy for prostate cancer so as a prostate cancer support group, your help would be invaluable. With your help we hope to clearly demonstrate the impact of our research, raise more awareness of cancer and drive more support for the crucial research that we are doing at the ICR to help defeat cancer.
    • You can sign up to share your story with us at https://www.icr.ac.uk/about-us/share-your-story. All of this information is stored in a secure database, and once you enter your details in the ‘Share your story’ page, a member of the ICR’s Communication team will contact you to discuss your story in more depth and talk you through the next steps.
  • Finally, we have word of a research project at Coventry University.  There is not space to give all the details here, but as an introduction: it is entitled Risk and Resilience Factors Associated with Cognitive Changes Following Androgen Deprivation Therapy in Prostate Cancer Patients.
    • It is a research study looking into cognitive changes in men with prostate cancer. The study is funded by Prostate Cancer UK, and has been reviewed and given ethical approval from South Birmingham Research Ethics Committee (Reference: 15/WM/0338).  They are currently running the study at the University of Birmingham and Aston University. As well as recruiting to the study from hospital clinics, they are also using social media and support groups to spread the word about the study, and anyone who is interested in taking part is very welcome to contact the research team to find out more. 

If you think this might be of interest to you, I can forward all the background detail papers, and you can read more at http://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-study-looking-thinking-memory-concentration-problems-men-having-hormone-treatment-prostate-cancer-cogcan.

If you no longer wish to receive this Newsletter please let me know on johngrundy191@gmail.com or 01865 730110.  For news updates keep an eye on our website at www.opcsg.org.

Please note that I shall be abroad between 10 March and 12 April.  I can respond to emails then, but please do not try to ring me.

John Grundy                                                                          Chairman, OPCSG