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Best Practice Pathway Feedback

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User
Posted 05 Jun 2017 at 11:50

Posting on behalf of my colleague Chris.

Hi everyone,

Prostate Cancer UK is creating a Best Practice Pathway that will set out the current best practice from diagnosis to treatment and support for men with prostate cancer and is designed to be used by health professionals.

We’d be grateful if you could feed back to us on any questions, that in hindsight, you wish your clinician would have asked you in relation to the side-effects of treatment or where a discussion relating to your concerns would have been helpful. We’ll then incorporate this into the pathway as a list of trigger questions that can be used by health professionals to allow men to discuss their concerns with regards to their treatment.  

Furthermore if you could include in your feedback the stage of the disease (if known) and treatment type you received, that would be greatly helpful. We look forward to hearing your feedback on this. You can reply to this post or email me at chris.whittle@prostatecanceruk.org

Best wishes

Chris Whittle
Policy, Knowledge and Impact Coordinator
Prostate Cancer UK

 

 

User
Posted 05 Jun 2017 at 14:00

Hi Chris
My wife and I were talking about this the other day. Remembering everyone has different thoughts and fears and preferences .........
I desperately didn't want surgery due to a mix of things including mental illness and an enormous fear of ED. Now I'm 2 years post surgery and see and hear and receive messages from scores of men , women , couples about the utter devastation that is caused by the various treatments , especially so to younger people I feel. I guess no surgeon is going to tell you just how awful 2 years of ED is going to be , when all he wants to do is remove your cancer.
And the mental torture this disease brings to us all. The waiting , the worrying , the fears , the blood tests. The relentless battle against something that seems invincible for the unlucky majority. There are very few winners with prostate cancer.
I am endlessly helping people , both men and women , whose sex-lives have been reduced to absolute zero by this disease , whether it be by mental collapse , embarrassment , communication problems , or sheer lack of solid expert advice and aftercare by the professionals. I've simply driven my own ED recovery myself because I didn't want to be totally impotent at 50 yrs old.
There has to be a tailored service and advice by the NHS depending on a mans age and wishes and fears. There is simply no point in removing a mans prostate and " curing " him , and then allowing his life to collapse around him , and his marriage to fail , and his self-esteem and confidence to plummet , without offering suitable mental and physical aftercare treatments.
I'm not speaking for all by any means , and most older men aren't as concerned I suppose , but my inbox and messenger and texts and calls etc are permanently full of people seeking help.
Sorry to ramble , but I think there needs to be a whole lot more honesty about treatment and it's side-effects up front by the health professionals and local GPs. They shouldn't wait for proud men to look for care.

User
Posted 05 Jun 2017 at 17:58

Chris

You were a great help to me by introducing me to Invicorp 25 - otherwise things would be a total flop.  Thank you.

As a younger man with PCa, it is the uncertainty that plays tricks with my mind.  Will I live long enough to get my pension?  Should I stop making payments to my pension?  Will I enjoy my pension if I do live long enough, or will I be too sick to enjoy life?  Should I give up my job and go and do something more enjoyable?  What if I continue to work while I'm still healthy and then suddenly become so ill I've wasted the years I had left?

And every day, even though I don't necessarily let it get me down, I have cancer on my mind.  It is inescapable.

I'm very lucky in that I'm in the care of a great team at my hospital.  Unfortunately, though, they can't answer the questions above, no matter how good they are.

But back to my original point - thanks for being a help and support to me.

Ulsterman

User
Posted 05 Jun 2017 at 11:50

Posting on behalf of my colleague Chris.

Hi everyone,

Prostate Cancer UK is creating a Best Practice Pathway that will set out the current best practice from diagnosis to treatment and support for men with prostate cancer and is designed to be used by health professionals.

We’d be grateful if you could feed back to us on any questions, that in hindsight, you wish your clinician would have asked you in relation to the side-effects of treatment or where a discussion relating to your concerns would have been helpful. We’ll then incorporate this into the pathway as a list of trigger questions that can be used by health professionals to allow men to discuss their concerns with regards to their treatment.  

Furthermore if you could include in your feedback the stage of the disease (if known) and treatment type you received, that would be greatly helpful. We look forward to hearing your feedback on this. You can reply to this post or email me at chris.whittle@prostatecanceruk.org

Best wishes

Chris Whittle
Policy, Knowledge and Impact Coordinator
Prostate Cancer UK

 

 

User
Posted 11 Jun 2017 at 13:44

Another thing I feel quite strongly about is catheter management.  I was often in so much pain that I just wanted to pull it out.  I was often told by health professionals that I had a foreign body in me so a certain level of pain was to be expected.  After the catheter was removed, I had what my GP called 'coffee ground' urine.  He said it was nothing to worry about, but how was I meant to know that?

I can't complain about my hospital team or GP as they have generally been outstanding.  However, I do think that as catheter and post-catheter management seems not to present too many problems for a lot of men, there is a lack of information or understanding out there when it isn't quite as straightforward for some of us.

Also, the speed with which men get access to ED clinics and treatment.  I've never been to an ED clinic.  My urologist and GP managed this and I've been through practically every treatment available short of penile implant.  Thankfully, Invicorp 25 worked, otherwise it was an implant I was looking at.  I know some men who are still on the waiting list for ED clinics.  It's not right.

Ulsterman

User
Posted 12 Jun 2017 at 12:06

I think there should be more signposting to mental health support throughout the diagnosis and treatment. This has been the major issue for us and some early intervention may have prevented things spiralling out of control and made the whole process easier to deal with. It doesn't end with treatment either as living with the side effects of treatment, e.g. ED or even when treatment is going well can have it's own problems.

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User
Posted 05 Jun 2017 at 14:00

Hi Chris
My wife and I were talking about this the other day. Remembering everyone has different thoughts and fears and preferences .........
I desperately didn't want surgery due to a mix of things including mental illness and an enormous fear of ED. Now I'm 2 years post surgery and see and hear and receive messages from scores of men , women , couples about the utter devastation that is caused by the various treatments , especially so to younger people I feel. I guess no surgeon is going to tell you just how awful 2 years of ED is going to be , when all he wants to do is remove your cancer.
And the mental torture this disease brings to us all. The waiting , the worrying , the fears , the blood tests. The relentless battle against something that seems invincible for the unlucky majority. There are very few winners with prostate cancer.
I am endlessly helping people , both men and women , whose sex-lives have been reduced to absolute zero by this disease , whether it be by mental collapse , embarrassment , communication problems , or sheer lack of solid expert advice and aftercare by the professionals. I've simply driven my own ED recovery myself because I didn't want to be totally impotent at 50 yrs old.
There has to be a tailored service and advice by the NHS depending on a mans age and wishes and fears. There is simply no point in removing a mans prostate and " curing " him , and then allowing his life to collapse around him , and his marriage to fail , and his self-esteem and confidence to plummet , without offering suitable mental and physical aftercare treatments.
I'm not speaking for all by any means , and most older men aren't as concerned I suppose , but my inbox and messenger and texts and calls etc are permanently full of people seeking help.
Sorry to ramble , but I think there needs to be a whole lot more honesty about treatment and it's side-effects up front by the health professionals and local GPs. They shouldn't wait for proud men to look for care.

User
Posted 05 Jun 2017 at 17:58

Chris

You were a great help to me by introducing me to Invicorp 25 - otherwise things would be a total flop.  Thank you.

As a younger man with PCa, it is the uncertainty that plays tricks with my mind.  Will I live long enough to get my pension?  Should I stop making payments to my pension?  Will I enjoy my pension if I do live long enough, or will I be too sick to enjoy life?  Should I give up my job and go and do something more enjoyable?  What if I continue to work while I'm still healthy and then suddenly become so ill I've wasted the years I had left?

And every day, even though I don't necessarily let it get me down, I have cancer on my mind.  It is inescapable.

I'm very lucky in that I'm in the care of a great team at my hospital.  Unfortunately, though, they can't answer the questions above, no matter how good they are.

But back to my original point - thanks for being a help and support to me.

Ulsterman

User
Posted 11 Jun 2017 at 00:57

Hi Carol,
I think it would be useful if the pathway reminded medics to inform men that as soon as they are diagnosed they are entitled to free prescriptions, and how to apply. It should also explain that while it only lasts 5 years any man who has cancer, is having treatment for cancer or is having treatment for the side effects of cancer is entitled to reapply, and that active surveillance is included in this. We were lucky that the urologist mentioned it at our second meeting but I don't think that has been the experience of many members on here.

I also think it should include a reminder that men on HT and or RT may also need or advice on ED and penile health, not just men opting for surgery.

Edited by member 11 Jun 2017 at 01:07  | Reason: Not specified

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

User
Posted 11 Jun 2017 at 01:12

I just asked John and he says the question he wanted to ask and no one ever explained was "why don't I feel ill?"

You ask for staging:- He was diagnosed as T1, upgraded to T3 post-op, recurrence 2 years after surgery treated with HT/ RT and now likely recurrence 5 years after salvage treatment.

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

User
Posted 11 Jun 2017 at 13:44

Another thing I feel quite strongly about is catheter management.  I was often in so much pain that I just wanted to pull it out.  I was often told by health professionals that I had a foreign body in me so a certain level of pain was to be expected.  After the catheter was removed, I had what my GP called 'coffee ground' urine.  He said it was nothing to worry about, but how was I meant to know that?

I can't complain about my hospital team or GP as they have generally been outstanding.  However, I do think that as catheter and post-catheter management seems not to present too many problems for a lot of men, there is a lack of information or understanding out there when it isn't quite as straightforward for some of us.

Also, the speed with which men get access to ED clinics and treatment.  I've never been to an ED clinic.  My urologist and GP managed this and I've been through practically every treatment available short of penile implant.  Thankfully, Invicorp 25 worked, otherwise it was an implant I was looking at.  I know some men who are still on the waiting list for ED clinics.  It's not right.

Ulsterman

User
Posted 12 Jun 2017 at 12:06

I think there should be more signposting to mental health support throughout the diagnosis and treatment. This has been the major issue for us and some early intervention may have prevented things spiralling out of control and made the whole process easier to deal with. It doesn't end with treatment either as living with the side effects of treatment, e.g. ED or even when treatment is going well can have it's own problems.

User
Posted 20 Nov 2017 at 15:47

At my first oncologist examination I was asked if I had any questions as I knew nothing about prostrate I had no idea what questions to ask an the oncologist did not explain his plane found out later his plan was to do a biop within 6 weeks it was 6 months later that it was done (if I had been told the plans I could have phoned to check ) but I know this is head in sand but thoughts were no news is good news but I had fallen of the radar THE MORAL TO THIS STORY IS DOCTORS NURSES AND COSULTANTS SHOULD TELL PEOPLE WHAT THEY PLAN TO DO  

User
Posted 20 Nov 2017 at 17:41

One thing that comes to mind is emphasising that it may take quite a long time between biopsy and results. I remember this was very difficult, waiting 4 weeks from biopsy to consultant appointment for results.

ARR

User
Posted 20 Nov 2017 at 22:15
My husband was sent on on a wild goose chase 2 weeks before his biopsy results were in. Some sort of appointment error. Our stress levels were through the roof to start with only to find they did not have the report. What we found unforgivable though was being fobbed off on a Macmillan nurse for what amounted to a small talk chat!

I think it should never be the case that someone is seen by a Macmillan nurse BEFORE

they have a cancer diagnosis.

 
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