I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Get involved in Prostate cancer research

User
Posted 28 April 2014 10:32:55(UTC)
Hi Everyone,

I work in the communications team at Prostate Cancer UK and am setting up this new topic as a place where you can find opportunities to get involved in prostate cancer research - either things we're running ourselves, or opportunities we hear about from elsewhere.

We'd also be really pleased to hear about any similar opportunities you come across anywhere else, so please do email me at sophie.lutter@prostatecanceruk.org to let me know!

So to start this topic off, we've heard about a focus group being run by University College Hospital on 3 June 2014. They're looking for men who've experienced recurrent prostate cancer after radiotherapy to help them design a new clinical trial. They want to involve men with prostate cancer from the very start of the process to make sure that they're asking, and answering, the questions that really matter to men. You can find out more about this on our website, as well as instructions on how to get involved at http://prostatecanceruk.org/get...diotherapy-focus-group?r.


I look forward to hearing from you!

Sophie
User
Posted 01 May 2014 20:32:07(UTC)
How about "what cures it, with the least side effects?"



Thanked 2 times
User
Posted 13 May 2014 19:05:02(UTC)

Question that matters very much to me: Should we encourage our close male relatives to have a yearly PSA test at an reasonable early age?

Rumors say PSA testing has become useless, that it leads to overtreatment and that it does not save lives anymore. Fortunately, I don't believe in rumors...

Signature: This suspense is terrible. I hope it will last.
Thanked 2 times
User
Posted 07 May 2014 12:11:32(UTC)
Would it be feasible to develop a quick arrow diagram test for sons on the lines of if two male relatives have had P CA ,go for PSA at age ??. If female relative also had breast cancer go for PSA ?? years earlier. If daughter of Pca patient have genetic profile done at ?? age. Even your helpline have been unable to assist in my attempt to keep our children safe(r).

Develop the other test for diagnosis as PSA is not necessarily the best. I believe a urine test is on the cards??
Thanked 1 time
Show Most Thanked Posts
User
Posted 01 May 2014 17:58:14(UTC)
Hi All,

I'd like to highlight an opportunity to have your say!

It’s important to us that we fund the research that matters to men with prostate cancer and their friends and family. We want our research to make a real difference. And we’d like your help to make sure we get that right. What are the questions that you think our research should be setting out to answer?
I’ve put some example questions that we’ve been asked by men below, and would love to hear yours too. We’ll answer the questions on our website, and make sure that they’re all acknowledged (although if we get lots of questions about the same thing, we might group them together so the wording might be a bit different).

Examples:
• How close are we to a personalized treatment for prostate cancer based on a detailed analysis of the genetic make-up of the cancer(s) of an individual?
• My mother and wife both had breast cancer, I've had prostate cancer and my father died from the disease. Is it possible to give a rough estimate of the statistical likelihood of my son developing the condition? He’s only 21, so when should he begin to have tests for prostate cancer? Would it be worth his while to have any genetic testing done at his age?
• Why do hormone therapy drugs cease to be effective after a time, whereas drugs for other conditions, such as HIV, remain effective for a very much longer time?
• Are there psychological barriers to men choosing, and health professionals advising, active surveillance as a preferred option? And why do some men who have chosen active surveillance subsequently decide to have treatment, even when this is not considered necessary?
• Why is Docetaxel Chemotherapy still used when its success rate is so poor?

Add your voice to this debate and ask us your questions about prostate cancer research by replying to this topic. We hope that the discussions generated by these questions will help tell us what research we should be prioritising.
User
Posted 01 May 2014 20:32:07(UTC)
How about "what cures it, with the least side effects?"



Thanked 2 times
User
Posted 06 May 2014 09:30:05(UTC)

Quote:
Originally posted by flexi
How about "what cures it, with the least side effects?" [qu
ote]

Thank you for the question - I'll add it in. I suspect that one doesn't have a straightforward answer, but that's no reason not to ask... Thanks again!

User
Posted 07 May 2014 09:32:00(UTC)

Originally Posted by: Online Community Member
How about "what cures it, with the least side effects?"



 

Thank you for your question. I'll make sure it gets added to the discussion.

User
Posted 07 May 2014 12:11:32(UTC)
Would it be feasible to develop a quick arrow diagram test for sons on the lines of if two male relatives have had P CA ,go for PSA at age ??. If female relative also had breast cancer go for PSA ?? years earlier. If daughter of Pca patient have genetic profile done at ?? age. Even your helpline have been unable to assist in my attempt to keep our children safe(r).

Develop the other test for diagnosis as PSA is not necessarily the best. I believe a urine test is on the cards??
Thanked 1 time
User
Posted 07 May 2014 13:46:55(UTC)

Hi,Thank you so much for your questions - those are both very good questions and well worth asking. I will make sure that they get picked up and addressed.

Many thanks,

Sophie

Thanked 1 time
User
Posted 13 May 2014 19:05:02(UTC)

Question that matters very much to me: Should we encourage our close male relatives to have a yearly PSA test at an reasonable early age?

Rumors say PSA testing has become useless, that it leads to overtreatment and that it does not save lives anymore. Fortunately, I don't believe in rumors...

Signature: This suspense is terrible. I hope it will last.
Thanked 2 times
User
Posted 15 May 2014 23:07:44(UTC)
If there is no profit in a cure what is the incentive for the large pharmaceutical companies to follow this path, instead of researching treatments that will continue to provide a revenue stream, therefore will it be down to the charities to fund this type of research for a cure.
User
Posted 16 May 2014 09:32:33(UTC)
Thank you Cano Roto and Roy L for your questions. I will add them to our list!
User
Posted 16 May 2014 12:39:24(UTC)
If you have prostate cancer and it's going to kill you is it best to get it out ie RP as the pivot trial seems to suggest It seems to provide a better outcome for those with high grade cancer.

Does treating the whole patient rather than the cancer alone improve outcome.

Can PCUK arrange for special rates with fitness providers so as to improve fitness of the sufferers.
User
Posted 21 May 2014 18:47:22(UTC)

Hi Roy L,

 

Re your question about treating the whole person: I was catching up on the "Ask Dr Myers" blog today. He is very much of the opinion that caring for health in general and cardiovascular health in particular, will have beneficial effects as far as helping to prevent PCa is concerned. He also suggested that this could help to reduce the progress of the disease.

 

His blog is well worth following for general information but bear in mind that a lot of what he says is based on the situation in the USA.

 

 

Kind regards,

John
User
Posted 21 May 2014 18:53:31(UTC)

And my own question:

 

What research is being done into dormant cancer cells and what causes them to become active, sometimes after many years?

Kind regards,

John
Thanked 1 time
User
Posted 21 May 2014 19:18:26(UTC)

And another one:

 

Are there any circumstances in which someone with Gleason 6 should opt for surgery rather than active surveillance?

Kind regards,

John
User
Posted 21 May 2014 19:27:25(UTC)
Hi John

When I was diagnosed I decided to take control, and looked at what I could do to help my survival, so I looked at what else was wrong with my body, and found my Cholesterol was high at 7.2, and after research found that it may have a relationship with PCA, so after changing my diet reduced it to 5.7, also I have a simple cyst on my adrenal gland which the doctors say is not significant, but it am not convinced, as the adrenal gland regulates our hormone levels such as testosterone, so I continue to research and ask questions, but apart from these two factors I am ok, so in my opinion and it is just that, finding what else is wrong with your body, should be addressed, and treated, and maybe this will lead to a better outcome.

Roy
User
Posted 23 May 2014 16:04:37(UTC)
Hi John,

Thanks for your questions. I'll add them to our list - which is growing marvellously! It's great to hear so many questions and opinions about such an important issue.
User
Posted 17 June 2014 16:09:10(UTC)

I'm part of a non clinical study into the relationships between Sleep and Prostate Cancer at the Institute of Education and Imperial College.

All began when my dad began having investigations at the local hospital Urology Dept into the possibility of having prostate cancer. The beginning is all a blur now, urodynamic flow tests, all kinds of "oscopies", lots of meds and lots of issues around waterworks. To cut a long story short I became interested in what happens in the mind when all this is happening and became a researcher because I remember vividly after one UTI, my dad not recognising me, one of the strangest moments between us ever.


The study is here www.sacdips.co.uk. Please email me if you are interested in finding out more.

Shaz

 

 

User
Posted 02 August 2014 16:08:27(UTC)
'Galustian Lay' research is just starting. I believe the research is looking to see whether PROVENGE could be taken one step further The summary makes interesting reading and may provide some answers but, I understand, not for two years. Could you keep your 'tabs' on the research and let us know how it is progressing?

User
Posted 05 August 2014 07:30:12(UTC)
Hi Everyone,

We've heard of some new talks and exhibitions going on around London that may be of interest. Have a look and see what you think!

Prostate Cancer Imaging and Treatment: an exhibition at UCL from 31 July - 19 December

UCL are hosting a free interactive exhibition about prostate cancer treatment and imaging in their Octagon Gallery in the Wilkins Building on the main campus on Gower Street (WC1E 6BT). It's open from 8am-6pm Monday to Friday, and 10am - 4pm on Saturday. If you're in the area, why not pop in and have a look?

Imperial Cancer Research lecture series: 24 September, 6 - 7pm

Dr Charlotte Bevan will be discussing her team's prostate cancer research, and Dr Alison Falconer will be on hand to answer any clinical topics that come up. Both Dr Bevan and Dr Falconer will be ready and willing to answer your questions! To find out more, or register for this event, email Kelly Gleason at k.gleason@imperial.ac.uk.

Please do let us know if you go to either of these events and tell us what you think!

Thanks,

Sophie
User
Posted 09 September 2014 13:12:55(UTC)

Hi Everyone,

There are two public research events coming up that we thought you might be interested in. These events – one in London and one in Manchester - are to celebrate the Movember Centres of Excellence, and how they’ll be changing the future of prostate cancer research over the next few years. Please find the details below, as well as what you need to do if you’d like to attend.

Friday 19 September, 5 – 9pm, Education Centre, Royal Geographic Society, 1 Kensington Gore, London SW7 2AR.

On Friday 19 September, Professor Johann de Bono will be talking about his work as part of the London Movember Centres of Excellence. Professor de Bono’s distinguished career has been built around developing new therapies for advanced cancer patients, including for men with advanced prostate cancer. At this event, he’ll talk about the work that he and the whole team of scientists and doctors involved in the London Movember Centre of Excellence will be doing to bring laboratory discoveries into the clinic over the next five years.

To attend this event, please email nela.alkhafaji@icr.ac.uk or phone 0208 661 3988.

Tuesday 28 October, 7.30 – 9pm, The Albert Square Chop House, The Memorial Hall, Albert Square, Manchester, M2 5PF.

To mark the launch of Movember 2014, Adam Garone – CEO, Movember - as well as Professors Richard Marais, Noel Clarke and David Waugh, co-directors of the Belfast-Manchester Movember Centre of Excellence will be talking about the future of prostate cancer research, and what changes men can expect to see in the next twenty years or so – thanks in part to research programmes like the Movember Centres of Excellence, in partnership with Prostate Cancer UK.

To register for this event, please go to: http://bit.ly/MovemberScienceEvent

Best wishes,

Jen

Prostate Cancer UK

User
Posted 10 September 2014 17:48:57(UTC)

I would like to ask if there is any research into Prostate Cancer triggers. I believe research has shown that 10% of cancers are inherited through genes passed form the parents, but 90% of cases are due to carcinogens in the environment we live in. This can include anything form cleaning or gardening chemicals, exhaust fumes, smoking, alcohol, diet and many many more the list is infinite.

Also I had a very serious UTI that almost killed me two years before diagnosis, could this have been some sort of trigger?

I would like EVERY man who has or had prostate cancer to fill in a lifestyle and health questionnaire, to build up a database to look for possible common triggers, I have listed some example questions below.

Did they all have previous UTI's?

What does their normal diet consist of?

Did they smoke or take alcohol, and if so how much of both and for how long?

What is their employment if any?

What has there general health been like over their lifetime?

Have they ever had any other serious illnesses?

Are they over weight?

How much exercise if any do they undertake?

The above list of questions is just for starters and is by no means finite.

This could build the biggest modern database of all UK Prostate Cancer cases, and provide invaluable research data.

Regards,

Gerry

User
Posted 18 December 2014 15:37:56(UTC)

That's a great question, and I hope that some of the answers we've gathered will help to address at least part of it.

And that leads me on to the main part of my comment:

We’ve now published some of the questions you sent us back in the summer, with answers from the experts on our website, so please do check them out at http://prostatecanceruk.org/research-questions

We haven’t answered all the questions yet, so we’ll keep updating the page as we get more questions and answers in.
Thank you so much for your contributions, and if you have more questions, please do keep sending them through to researchquestions@prostatecanceruk.org.

Best wishes,

Sophie

User
Posted 19 December 2014 15:26:40(UTC)

Hi Sophie,

Here's an idea. 

With the advances in stem cell research, should research be undertaken into the possibility of re-growing a healthy prostate (and/or seminal vesicles / nerves / lymph nodes) with a view to replacing that which is extracted by prostatectomy or killed by RT?

Perhaps it could be possible to avoid, in a probably distant future, the side-effects such as ED, urinary incontinence, etc.

 

Life is a journey. You can't move forward on a journey AND stay in the same place.
User
Posted 13 January 2015 12:47:01(UTC)

Hi all,

I just wanted to make sure you saw a new event that we're running later this month: http://community.prostat...posts&t=10451&=#

It's called 'pub science' and we've got a group of prostate cancer researchers who'll be sitting in the pub, taking questions from the audience from 6-730 on 31 January.

Have a look at the post, or go to http://prostatecanceruk/menunitedarms for more information - hopefully they'll be able to answer some of your excellent questions.

Thanks,

Sophie

User
Posted 14 March 2015 06:02:38(UTC)

Research is great. May be you will find out, why prostate cancer appears =_=. I'd wish to know why these ill's existing.

User
Posted 23 April 2015 13:11:56(UTC)

Hi everyone,

I just wanted to flag an event that's being run by The Royal Marsden Hospital that some of you may be interested in. If you do decide to go along, please let us know how it went and what you thought!

Best wishes,

Sophie


Imaging research open evening
Wednesday 20 May 2015
from 5.30pm
The Cherry Tree Restaurant,
The Royal Marsden, Downs Road, Sutton, Surrey SM2 5PT

The imaging research open evening welcomes patients and relatives, patient advocates, healthcare professionals, scientists and staff working in cancer support networks.

The evening will provide an opportunity to meet the staff and find out more about the research work of the Imaging Clinical Research Facility, tour the MRI and PET/CT facilities, see the scanners at work and learn about our imaging research on improving the diagnosis, assessment and treatment of cancer.

Please RSVP by 13 May 2015 by emailing imagingCRF@rmh.nhs.uk

Thanked 1 time
User
Posted 19 May 2015 19:04:05(UTC)

Go away please

User
Posted 19 May 2015 19:15:55(UTC)

Seconded.

User
Posted 20 May 2015 08:44:12(UTC)

Thirded.

 
©2018 Prostate Cancer UK