Meetings 2020/21
Due to government covid guidelines there were no meetings in 2020 or 2021 except for the presentation on 14th October 2021 and there will be no face to face group meetings until further notice.
Due to government covid guidelines there were no meetings in 2020 or 2021 except for the presentation on 14th October 2021 and there will be no face to face group meetings until further notice.
Notes on Mid Sussex Prostate Cancer Support Group Meeting held on 24 March 2022 at Haywards Heath Social Club
Brian, Chair of MSPCSG, welcomed everyone to the meeting. We had two new members, Ken Hall and Bob Stiles.
News Items
Brian explained that Burgess Hill Rotary Club had recently held a quiz night which raised £750 and this had, very kindly, been donated to our support group. It was decided that, over the coming few months, we would endeavour to get more men to join our support group waiving the joining fee which will come out of these funds.
We are planning our 10th Anniversary for 17 June. The venue has not yet been fixed but we will have an outside area similar to The Macs’ Farm where we had a successful event last summer. Further details will be circulated to members when finalised.
Brian then introduced the committee to the group.
The first speaker was member, David Spence
David outlined his prostate cancer journey including treatment, side effects and beneficial exercise regime.
Living in Ardingly, David is married with 3 grown up children and 2 grandchildren. He retired from the police service in March 2019, after 41 years, as a result of his prostate cancer diagnosis.
David recalled how in February 1980 he was at a rather convivial lunch with colleagues when he was telephoned by his doctor’s surgery who advised him to attend an early appointment the following day. He was examined, and once it was established he had prostate cancer, he was considered suitable for brachytherapy which was carried out in Nov 2018. This was later followed by external beam therapy at Preston Park.
In March 2019 his consultant, Angus Robinson, advised him that he had to stay on Zoladex for a further 2 years which was a major shock for David as he had felt the treatment very debilitating, with weight gain, depression etc. While he was in Brighton hospital a Macmillan nurse took him to one side asking several probing questions about his lifestyle, including his lack of exercise, and what he felt may have contributed to his current lack of self confidence. He believed that since the diagnosis his self confidence had definitely waned, and it was established that he undertook very little exercise and had cancelled his gym membership. It was at this point that the nurse explained about “Albion in the Community” and David was introduced to the organisation at the football club. In a fantastic setting overlooking the football ground, he felt it was great.
A questionnaire was completed covering David’s prostate cancer journey and background, and then a week or so later he started circuit training sessions at Bolney village hall where he made a lot of friends who had been through similar journeys. These sessions were organised and run by a specialist gym trainer from within Albion in the Community. This trainer didn’t “pull any punches” in her training which was circuit training - 1 hour’s exercise in the village hall. It motivated him and greatly assisted to turn his life around; he got to a point where he even felt he could do even more exercise. He didn’t want to return to the Dolphin Leisure Centre as he preferred the circuit training he was undergoing. He eventually found a gym at Borde Hill Gardens and he felt they took him to another level. There are only ever about 6 people doing the training in a class environment led by a qualified trainer. Age difference didn’t matter, and the exercises were varied to work on the core. The benefit was amazing. He feels he has still got weight to lose, but feels so much better. He finished his treatment in Sept 2020. However, he acknowledges that it takes a long time to get pc treatments through your system.
David now has a volunteer role raising awareness of pc. He is no longer having any treatment. His prostate cancer was contained and his PSA is currently less than 1. He acknowledges, and is grateful, that family support was always there for him, particularly when he felt depressed on Zoladex. However, he knows that the exercise definitely helped him get back to normality.
The side effects of Zoladex were discussed in general, and the benefits of exercise were acknowledged.
It was noted that it would be extremely beneficial to have someone attend the initial interview with consultant (if possible) who could help by taking notes, as the shock of a diagnosis given by the consultant can blur the reality.
Second speaker was member, Ray Monk
Ray explained he was diagnosed with pc 2 years ago. His journey started when he was working for General Electric. He had to have an annual medical, and his PSA levels were noted to be elevated from time to time. A few years later his PSA rose and he had an MRI, which wasn’t conclusive, so he had a biopsy carried out - Gleason 3+3, low risk. He has been on active surveillance ever since, and over the past 9 months he has been on a drug called Fenesteride which can help slow the progression of the cancer. As the drug currently seems to be working for Ray, he proposes to stay on it for as long as it is appropriate. His PSA is 11.4. He will have an MRI next month to identify any progression.
Ray believes that Fenesteride is a drug that we should be using, but we are not, even though it has been around for more than 30 years. Men are currently not being diagnosed early enough to make treatment with Fenesteride beneficial, which obviously means different treatment with more side effects. The main benefit from taking Fenesteride is that it can reduce the size of the Prostate by up to 25% which in itself could alleviate the need for other procedures such as TURPS or HoLEP.
Ray is involved on a steering committee for Fenesteride. He answered an email which was looking for volunteers interested in getting involved in the trial, and then he was invited on to the steering committee. As part of his work Ray has analysed the NHS prescription data for England and found that there has been a steady decline in the use of this and similar drugs since 2014.
He has also joined an MRI study for Imperial College which he was finding very interesting. This particular trial is based on previous evidence, at the request of NICE, who want to look at improving protocols within NICE, and how low and intermediate cases can be monitored more easily - to avoid biopsies. The project will take another 6 - 9 months to actually get going. The objective is to find 500 patients willing to take part in the study who can be evaluated over a 3 year period.
Ray explained the basic function of the MRI scanner and the peripheral equipment (Pelvic Phased Array Coils, Endorectal coils and Gadolinium) that are used in the process and the 2 types of MRI: Multiparametric and Biometric. There are some challenges: the use of refined standard protocols, optimised sets of MRI scanner systems. A common standard for the NHS would be the ideal, but of course this would involve huge investment and training.
It was generally felt that it would be advantageous to have the head free rather than feet when in an MRI scanner. However, for those who suffer from claustrophobia they use an 'open' form of scanner. A question was raised asking if they are as accurate as the 'tunnel' type of scanner. Ray will come back to revisit that question.
A question was also raised about the time interval between scans. In the study they can be either 1 year or two years depending on the patient. In practice this needs to be much shorter.
Ray is also working with PCUK’s Patient Representative Network Team, looking into new studies, which he is really looking forward to. He has an induction course to attend on 8th April.
A discussion amongst members then took place about PSA testing, reluctance of GPs to do the test, no available pc screening, and currently available drugs for pc.
Chairman’s Thanks
Brian thanked everyone for coming and particularly the two members who had given the very interesting talks.
28.3.22/JL
Brian, Chair of MSPCSG, welcomed everyone to the meeting. We had two new members, Ken Hall and Bob Stiles.
News Items
Brian explained that Burgess Hill Rotary Club had recently held a quiz night which raised £750 and this had, very kindly, been donated to our support group. It was decided that, over the coming few months, we would endeavour to get more men to join our support group waiving the joining fee which will come out of these funds.
We are planning our 10th Anniversary for 17 June. The venue has not yet been fixed but we will have an outside area similar to The Macs’ Farm where we had a successful event last summer. Further details will be circulated to members when finalised.
Brian then introduced the committee to the group.
The first speaker was member, David Spence
David outlined his prostate cancer journey including treatment, side effects and beneficial exercise regime.
Living in Ardingly, David is married with 3 grown up children and 2 grandchildren. He retired from the police service in March 2019, after 41 years, as a result of his prostate cancer diagnosis.
David recalled how in February 1980 he was at a rather convivial lunch with colleagues when he was telephoned by his doctor’s surgery who advised him to attend an early appointment the following day. He was examined, and once it was established he had prostate cancer, he was considered suitable for brachytherapy which was carried out in Nov 2018. This was later followed by external beam therapy at Preston Park.
In March 2019 his consultant, Angus Robinson, advised him that he had to stay on Zoladex for a further 2 years which was a major shock for David as he had felt the treatment very debilitating, with weight gain, depression etc. While he was in Brighton hospital a Macmillan nurse took him to one side asking several probing questions about his lifestyle, including his lack of exercise, and what he felt may have contributed to his current lack of self confidence. He believed that since the diagnosis his self confidence had definitely waned, and it was established that he undertook very little exercise and had cancelled his gym membership. It was at this point that the nurse explained about “Albion in the Community” and David was introduced to the organisation at the football club. In a fantastic setting overlooking the football ground, he felt it was great.
A questionnaire was completed covering David’s prostate cancer journey and background, and then a week or so later he started circuit training sessions at Bolney village hall where he made a lot of friends who had been through similar journeys. These sessions were organised and run by a specialist gym trainer from within Albion in the Community. This trainer didn’t “pull any punches” in her training which was circuit training - 1 hour’s exercise in the village hall. It motivated him and greatly assisted to turn his life around; he got to a point where he even felt he could do even more exercise. He didn’t want to return to the Dolphin Leisure Centre as he preferred the circuit training he was undergoing. He eventually found a gym at Borde Hill Gardens and he felt they took him to another level. There are only ever about 6 people doing the training in a class environment led by a qualified trainer. Age difference didn’t matter, and the exercises were varied to work on the core. The benefit was amazing. He feels he has still got weight to lose, but feels so much better. He finished his treatment in Sept 2020. However, he acknowledges that it takes a long time to get pc treatments through your system.
David now has a volunteer role raising awareness of pc. He is no longer having any treatment. His prostate cancer was contained and his PSA is currently less than 1. He acknowledges, and is grateful, that family support was always there for him, particularly when he felt depressed on Zoladex. However, he knows that the exercise definitely helped him get back to normality.
The side effects of Zoladex were discussed in general, and the benefits of exercise were acknowledged.
It was noted that it would be extremely beneficial to have someone attend the initial interview with consultant (if possible) who could help by taking notes, as the shock of a diagnosis given by the consultant can blur the reality.
Second speaker was member, Ray Monk
Ray explained he was diagnosed with pc 2 years ago. His journey started when he was working for General Electric. He had to have an annual medical, and his PSA levels were noted to be elevated from time to time. A few years later his PSA rose and he had an MRI, which wasn’t conclusive, so he had a biopsy carried out - Gleason 3+3, low risk. He has been on active surveillance ever since, and over the past 9 months he has been on a drug called Fenesteride which can help slow the progression of the cancer. As the drug currently seems to be working for Ray, he proposes to stay on it for as long as it is appropriate. His PSA is 11.4. He will have an MRI next month to identify any progression.
Ray believes that Fenesteride is a drug that we should be using, but we are not, even though it has been around for more than 30 years. Men are currently not being diagnosed early enough to make treatment with Fenesteride beneficial, which obviously means different treatment with more side effects. The main benefit from taking Fenesteride is that it can reduce the size of the Prostate by up to 25% which in itself could alleviate the need for other procedures such as TURPS or HoLEP.
Ray is involved on a steering committee for Fenesteride. He answered an email which was looking for volunteers interested in getting involved in the trial, and then he was invited on to the steering committee. As part of his work Ray has analysed the NHS prescription data for England and found that there has been a steady decline in the use of this and similar drugs since 2014.
He has also joined an MRI study for Imperial College which he was finding very interesting. This particular trial is based on previous evidence, at the request of NICE, who want to look at improving protocols within NICE, and how low and intermediate cases can be monitored more easily - to avoid biopsies. The project will take another 6 - 9 months to actually get going. The objective is to find 500 patients willing to take part in the study who can be evaluated over a 3 year period.
Ray explained the basic function of the MRI scanner and the peripheral equipment (Pelvic Phased Array Coils, Endorectal coils and Gadolinium) that are used in the process and the 2 types of MRI: Multiparametric and Biometric. There are some challenges: the use of refined standard protocols, optimised sets of MRI scanner systems. A common standard for the NHS would be the ideal, but of course this would involve huge investment and training.
It was generally felt that it would be advantageous to have the head free rather than feet when in an MRI scanner. However, for those who suffer from claustrophobia they use an 'open' form of scanner. A question was raised asking if they are as accurate as the 'tunnel' type of scanner. Ray will come back to revisit that question.
A question was also raised about the time interval between scans. In the study they can be either 1 year or two years depending on the patient. In practice this needs to be much shorter.
Ray is also working with PCUK’s Patient Representative Network Team, looking into new studies, which he is really looking forward to. He has an induction course to attend on 8th April.
A discussion amongst members then took place about PSA testing, reluctance of GPs to do the test, no available pc screening, and currently available drugs for pc.
Chairman’s Thanks
Brian thanked everyone for coming and particularly the two members who had given the very interesting talks.
28.3.22/JL
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Updated 20/06/2022