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Advanced prostate cancer - share your thoughts

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User
Posted 15 May 2015 at 15:54

Dear All,

Both of my Granddads have been diagnosed with advanced prostate cancer with metastases (spread). I have watched them both make very different decisions and choices about their treatment, so they have both had really different experiences, with the same diagnosis.

I have worked in the NHS treating and supporting men with prostate cancer for the last 15 years. Caring for both my Granddads has made me realise how little my colleagues and I really know about the impact and effects of treatment on all aspects of life - for the patient, and those around them.

 I decided to start to study for a professional doctorate. I wanted to research what helps people with advanced prostate cancer make a treatment decision and when you made your decision, what the treatment is like for you?

Can you share your opinions and experience to help people affected by advanced prostate cancer in the future?

I am hoping you can spare 10 minutes to anonymously share your thoughts by clicking on this link -> Radiotherapy for Bone Pain Survey

Or reply to this post with your thoughts about the following….

 What helped you make the decision (or not) to have radiotherapy treatment to your bones?

 

How would you best describe radiotherapy treatment to other people affected by advanced prostate cancer?

 

What advice would you pass onto future men with prostate cancer thinking about which treatment to choose to help with bone pain?

 

Thanks so much for your time and opinions and experience. Everything you post or answer in the survey will be used to help other people affected by advanced prostate cancer in the future.

User
Posted 28 May 2015 at 12:20

Hi all, I just wanted to let you know that we reviewed and approved Nikki's request to post this here – please do participate if you have anything to share.

Best,
Sadie

User
Posted 28 May 2015 at 13:08

Niko, have you got Ethics Committee approval - either from the NHS REC or, if that was not required, from your university?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 May 2015 at 22:40
I have completed the survey.
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User
Posted 28 May 2015 at 12:20

Hi all, I just wanted to let you know that we reviewed and approved Nikki's request to post this here – please do participate if you have anything to share.

Best,
Sadie

User
Posted 28 May 2015 at 13:08

Niko, have you got Ethics Committee approval - either from the NHS REC or, if that was not required, from your university?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 May 2015 at 22:40
I have completed the survey.
User
Posted 05 Jun 2015 at 11:38

Thanks Devonmaid for completing the survey http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

 

Hi Lyn,

Sorry about the delay in getting back to you...i have been away with work, i have just started a new job as a Consultant Radiographer working with people with Breast, Prostate and Colorectal cancer to improve wellbeing before and after treatment.

Thanks for your post and apologies...i should have made it clear that I had to submit a full ethics application to my University Ethics Committee (Bath University) and get approval from PCUK before posting onto the forum.  I submitted to ethics as i would like to use the anonymous results of the survey to understand more about what the experience of radiotherapy for bone pain is like to try and find ways to improve radiotherapy information and support in the future.  The results will also help my new role when I train NHS staff working in GP surgeries to understand more about advanced prostate cancer.

There hasn't been much research or studies at all in the past looking at the experience of treatments for advanced prostate cancer and bone pain -  this is why its so important to fill this gap in knowledge and raise awareness of advanced prostate cancer and treatments for bone pain.  It vital that people who have experienced the treatments are asked what was important to them - what helped make a treatment decision and what the treatment was like.  I am also really interested in how people see now radiotherapy now, especially as there are now a few more new treatments for bone pain available.

It would be great if anyone had a spare 10 mins to share their thoughts and experiences by clicking the link to the survey >Bone pain survey

Thanks so much,

Niko (Nikola Hawkins)

 

User
Posted 05 Jun 2015 at 14:55

will have a look after tomorrow at survey its my first oncologist visit on saturday

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 06 Jun 2015 at 10:33

Thats fantastic, thanks Bladerunner. I hope the Oncologist visit went ok...

User
Posted 06 Jun 2015 at 14:12

not going to start any radiotherapy as yet, unless it gets offered during stampede trial, so not really much point in me filling in your survey

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 06 Jun 2015 at 16:34

Thanks Bladerunner, I wish you all the best with the Stampede trial.

BW,

Niko

 

 
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