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PCUK support groups

User
Posted 17 Apr 2019 at 21:27

Hi guys and gals just wondering how many of you attend local prostate cancer support groups. Are they well attended, what is a typical attendance ? Have you attended and thought "not for me" ?Did you attend for while then stopped going? Were you told about the group's at diagnosis by your urology staff ?

Thanks Chris

User
Posted 18 Apr 2019 at 10:06

Not been yet, but intend to try one or two (don't know if it's my sort of thing yet).
The one at my hospital hasn't run for some time (don't know if it was PCUK), so I looked further afield.
I had two in my diary over last few months, but then they both clashed with hospital appointments.

I really enjoyed the Prostate Peddlers open event I mentioned on here, and I might continue with that one as it links in cycling, one of my hobbies, and lets me meet my consulting team "out of work", but that doesn't mean I wouldn't also attend a PCUK support group.

Edited by member 18 Apr 2019 at 10:14  | Reason: Not specified

User
Posted 20 Apr 2019 at 11:57

Hi colwickchris,

I attend the prostate cancer support group at the Macmillan Centre at UCLH in London, they are held on the second Thursday of every month and have been excellent. The usual setup is one month a specialist will give a talk followed by a Q&A then next month will be a general discussion between the men attending. They are really well attended, usually about 20 people not counting the nurses and health professionals who host the support group. I have found them to  be very informative and have aided my mental recovery.

I would definitely recommend attending although sometimes it gets a bit heavy there can also be plenty of good humour.

Ants

User
Posted 03 May 2019 at 22:02

Susan,

Went to your presentation at Reading support group tonight on the work of PCUK.
It was really interesting, thanks.

User
Posted 08 May 2019 at 00:18

Hi Andy, 

Glad you liked the Reading meeting last Friday. 

I'm on the committee at the Reading Support Group and am pleased that you felt you received a warm welcome and support from our members.  I hope you do continue to come along to the meetings, we are a very friendly bunch.

Steve 

User
Posted 15 May 2019 at 23:03

As part of my trying out different support groups, today, I went to the support group at Mount Vernon Hospital, Northwood (near Watford). Mount Vernon has a specialist cancer unit, and handles radio therapy for Beds, Herts, and North London.

With some 2000 prostate patients, I was a little surprised there were only 3 of us at the session. There was a serious incident which closed the M25, and another 3 people arrived later during the session as a consequence. (Traffic fowl-up has happened every time I've gone to Mount Vernon - doesn't bode well for getting there daily for over 4 weeks of EBRT in a couple of months.) For most of the patients, this was their first time at this support group. Some had come a long way, not knowing of any groups nearer to them. There was also a consultant radiologist and a Macmillan events organiser there. Later on, Mount Vernon's Macmillan nurse joined us too.

There was no planned schedule, so we all just talked together around a table with tea and biscuits, with plenty of opportunity to ask the radiologist questions (which a few of us did). The Macmillan events organiser was asking for feedback on support groups, treatment, and various other things. People asked about lots of specific issues they'd had, and others in the group responded. Actually, this was a really useful session, and about the right sized group to get away with doing it this way (it wouldn't work in a group of 50).

Due to what I've learned in this PCUK community forum and read research papers about PCa, I found myself answering quite a lot of the questions. None of the others there were aware of forums such as this (something I tried to fix), and much that we all know about here and discuss daily was completely unknown to them, and except for me, they were all past their radical treatments.

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User
Posted 18 Apr 2019 at 10:06

Not been yet, but intend to try one or two (don't know if it's my sort of thing yet).
The one at my hospital hasn't run for some time (don't know if it was PCUK), so I looked further afield.
I had two in my diary over last few months, but then they both clashed with hospital appointments.

I really enjoyed the Prostate Peddlers open event I mentioned on here, and I might continue with that one as it links in cycling, one of my hobbies, and lets me meet my consulting team "out of work", but that doesn't mean I wouldn't also attend a PCUK support group.

Edited by member 18 Apr 2019 at 10:14  | Reason: Not specified

User
Posted 20 Apr 2019 at 11:57

Hi colwickchris,

I attend the prostate cancer support group at the Macmillan Centre at UCLH in London, they are held on the second Thursday of every month and have been excellent. The usual setup is one month a specialist will give a talk followed by a Q&A then next month will be a general discussion between the men attending. They are really well attended, usually about 20 people not counting the nurses and health professionals who host the support group. I have found them to  be very informative and have aided my mental recovery.

I would definitely recommend attending although sometimes it gets a bit heavy there can also be plenty of good humour.

Ants

User
Posted 24 Apr 2019 at 09:56

I'm going to try a 2 or 3 and see which best suits me.
I live in two places as I'm also a carer for my parents, which means I can quite easily get to some which are far apart.

I'm intending to go along to the North Hampshire Prostate Cancer Support Group tomorrow (Thursday 25th, 2pm).

Other ones I could get to and might try are:
Reading Prostate Cancer Support next Friday 3rd May 6:30pm.
Mount Vernon Cancer Centre 3rd Wednesday of each month, 11am.
UCLH one as mentioned by Ants above, or any of the other London ones if anyone highly recommends them.

If anyone else from here is going to any of these, ping me if you want to say hello.

(As a carer, there's always the possibility I won't be able to go at the last moment.)

User
Posted 24 Apr 2019 at 10:59

Prostate Cancer UK does not run its own support groups. Instead our peer support team offers help to all prostate cancer support groups.  We can assist in setting up a new group, including offering grants for this purpose.  We provide good practice awards, annual workshops, free literature and plenty of practical support and advice.  Partner groups can also benefit from our third party liability insurance.  We also visit groups to offer personal support and provide tailored presentations on the work of Prostate Cancer UK, including the latest research developments. 

A comprehensive list of groups throughout the four nations can be found on our website.  Groups vary in size and what they provide, but critically the basis of support groups is to provide invaluable peer support, which most men and their partners find extremely beneficial.  Some groups are longstanding with committed members who continue to benefit from the group themselves and provide vital peer support to newly diagnosed men.  

User
Posted 03 May 2019 at 22:02

Susan,

Went to your presentation at Reading support group tonight on the work of PCUK.
It was really interesting, thanks.

User
Posted 03 May 2019 at 23:03

Andy

Bit of information if you don't mind, how many people attended the meeting ?

Thanks Chris

User
Posted 04 May 2019 at 00:10

Chris,

The organisers will have the exact numbers as everyone registered (beforehand, or on entry).
I would guess 60 or more.

As a newcomer to that group, I was impressed by the number of people who came and introduced themselves to me, asked what stage diagnosis/treatment I was at, and I had lots of conversations about treatments, symptoms, etc.

I also went to the Basingstoke one on 25th April. That one was slightly smaller, again guessing but maybe 50.

As a relatively young PCa victim, the Reading one was probably better for me as having some other younger attendees.

User
Posted 08 May 2019 at 00:18

Hi Andy, 

Glad you liked the Reading meeting last Friday. 

I'm on the committee at the Reading Support Group and am pleased that you felt you received a warm welcome and support from our members.  I hope you do continue to come along to the meetings, we are a very friendly bunch.

Steve 

User
Posted 15 May 2019 at 23:03

As part of my trying out different support groups, today, I went to the support group at Mount Vernon Hospital, Northwood (near Watford). Mount Vernon has a specialist cancer unit, and handles radio therapy for Beds, Herts, and North London.

With some 2000 prostate patients, I was a little surprised there were only 3 of us at the session. There was a serious incident which closed the M25, and another 3 people arrived later during the session as a consequence. (Traffic fowl-up has happened every time I've gone to Mount Vernon - doesn't bode well for getting there daily for over 4 weeks of EBRT in a couple of months.) For most of the patients, this was their first time at this support group. Some had come a long way, not knowing of any groups nearer to them. There was also a consultant radiologist and a Macmillan events organiser there. Later on, Mount Vernon's Macmillan nurse joined us too.

There was no planned schedule, so we all just talked together around a table with tea and biscuits, with plenty of opportunity to ask the radiologist questions (which a few of us did). The Macmillan events organiser was asking for feedback on support groups, treatment, and various other things. People asked about lots of specific issues they'd had, and others in the group responded. Actually, this was a really useful session, and about the right sized group to get away with doing it this way (it wouldn't work in a group of 50).

Due to what I've learned in this PCUK community forum and read research papers about PCa, I found myself answering quite a lot of the questions. None of the others there were aware of forums such as this (something I tried to fix), and much that we all know about here and discuss daily was completely unknown to them, and except for me, they were all past their radical treatments.

User
Posted 20 May 2019 at 21:44

One thing I've become aware of over the last few weeks is that PCUK, and Macmillan, and Tackle are all looking to setup more local support groups, although it wasn't clear to me that they each knew the others are also engaged in this work. Maybe some scope to work together, at least so they don't end up trying to set up a new one in the same area.

Edited by member 20 May 2019 at 21:53  | Reason: Not specified

User
Posted 05 Jun 2019 at 23:27

Went to another PC support group tonight, The FOPS (Friends of Prostate Sufferers). It's just off M25 J18 (Chorleywood).

This was a fantastic session. The talk is purely about PCa diagnosis and treatments. The format is a presentation, followed by an interactive session run by a couple of consultants. The consultants there today are urologists from Mount Vernon and UCL. I believe my oncology consultant is there sometimes. I didn't count up at the time, but thinking back, there were probably 30-40 people there - apparently there are usually more.

Today, the presentation was about a number of upcoming trials for advanced PCa, and was by a senior research nurse from Mount Vernon. One of the trials was about using Pembrolizumab (Keytruda) immunotherapy in combination with the second stage stage HT drugs and chemo, and in response to questions, she also went into detail about immunotherapy in it's own right - the history of it and what we understand so far, and genetic mapping.

The consultant session starts with new members introducing themselves, how they got diagnosed, their treatments past and future, etc. There were 3 new members including me, but this actually forms most of the session because the consultants take many of the points raised and go into detail explaining how things work. For example, the first new guy mentioned tamsulosin, so one of the consultants who had done the original trials on the first alpha-blocker (a predecessor to tamsulosin) went into detail about how it works, and contrasted it with how the drug to prevent bladder spasms works (can't recall what that one is). For those of us pre-radical treatment, they discussed our proposed treatment and other possible treatment options, with the pros and cons. This was useful for me - a bit like a second opinion. They would have offered me a RP in spite of being high risk T3a, but agreed I'd also need RT anyway, and that the path I'm currently on (whole pelvis RT and HDR Brachytheray) is probably as good, and stands a better chance of retaining erections, etc as I would not be a candidate for nerve sparing RP.

After the session, people mingle and chat, and several people came up to chat with me about the various things I'd said during my introduction. I had my medical notes with me, and one of the consultants looked through it and made some useful comments, and the research nurse was very interested in the work I'd done on Tamoxifen dosing for gynecomastia (and jokingly offered me a job at Mount Vernon;-). Apparently, they also prescribe Tamoxifen to reduce hot flushes, which was not something I'd come across.

I would strongly recommend this group to anyone who wants to have a detailed technical chat with expert consultants, in a friendly humorous atmosphere with a glass of wine or cup of tea/coffee/biscuit as you like.

They are the first Wednesday of the month 7.30pm to 9.30pm, but they skip July due to holidays.
EDIT: They are usually the 3rd Wednesday of alternate months starting with January, but this sometimes has to be changed due to consultant availability. Check on their website and/or "like" their Facebook page to be notified.

A few days ago, I also joined a countryside walk by the Reading Prostate Cancer Support Group to a pub for lunch. This was a good opportunity to chat with other PCa patients and their wives, something for which there isn't much time during their formal meetings. They decided to offer me one of their places at the Tackle AGM conference next week in Birmingham, which I'm looking forward to. If anyone else on here is also going and wants to say hello, PM me.

Edited by member 24 Feb 2020 at 07:10  | Reason: Update for dates of The FOPS prostate support meetings

User
Posted 06 Jun 2019 at 06:55

Andy

Thanks for the feedback. Sounds like a really good set up. 

Thanks Chris.

User
Posted 06 Jun 2019 at 09:42

Andy62

I've just gone on to the FOPS website.  They seem to be a well-organised and well-informed group.  I live about 35 minutes away from Chorleywood, so I plan to get to their meeting in either August or September.

Ulsterman

User
Posted 12 Sep 2019 at 17:37

The next The FOPS (The Friends of Prostate Sufferers) is Wednesday 18th September, 7:30pm (Chorleywood).

The next Mount Vernon Hospital Prostate Cancer Support Group is the same day, 11am - 1pm (Northwood, Rickmansworth - very near Chorelywood). This is a much smaller support group with no official agenda - just talking with tea and biscuits, and medical staff present.

I intend to go to both, if anyone here wants to say hello.

Edited by member 12 Sep 2019 at 18:17  | Reason: Not specified

User
Posted 06 Dec 2019 at 10:11
I go to the Urology Support group connected to the Gillingham Maritime Hospital. It is well attended and we had our Christmas Social this week at Gillingham Golf Club. I call it Prostate Club although it covers all Urology cancers and its real name is Urology Support. For more info see the web site at https://urologysupportwestkent.co.uk/

Geoffrey

User
Posted 09 Feb 2020 at 11:26

The next Mount Vernon Hospital Prostate Cancer Support Group is Wed 19th Feb, 11am - 1pm in the Postgraduate Medical Centre. (Mount Vernon is at Northwood, Rickmansworth). I thought I'd mention it here because this month, we have Teresa Lynch talking about erectile dysfunction. Teresa is one of the PCUK specialist nurses some of you will have spoken with by phone by calling the number at the top of this page.

Any prostate cancer patient is welcome to come along. I will be there if you want to say hello.

Edited by member 09 Feb 2020 at 11:29  | Reason: Not specified

User
Posted 28 Oct 2020 at 23:19

Local Support Groups Meeting on Zoom

Many local support groups are now meeting on Zoom. Given this, most will let you join even if you aren't local. I thought I'd mention a few...

The FOPS (normally based at Chorleywood) next meets on Wed 4th Nov. I will update The FOPS thread shortly.

Mount Vernon Hospital will be holding their first Zoom support group meeting on Wed 11th Nov at 8pm.  PM me if you want to join.

UCLH support group is now meeting on Zoom, next meeting on Thu 12th Nov at 12:30pm. They didn't maintain a list of members at their drop-in centre, so have been unable to inform those who used to attend in person. To attend, contact their Macmillan Centre uclh.supportandinformation@nhs.net and state that you want to attend the prostate cancer support group. You do not need to be a patient at UCLH to attend their meetings. Their meetings are the second Tuesday of the month, 12:30pm-2:00pm.

 
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