Prostate cancer. A useful resource.

[Speve]

An update on my operation and recuperation, well I am now four weeks since my radical prostectomy and although still feeling very weak I am gradually walking a little further, I and not having to use incontinence pads during the day only using one at night just in case but so far no accidents, the bonus is I was having to carry out ISC (intermittent self catheterisation) three times a day before my op and I haven’t needed to do this at all since.
I only used pain killers for two or three days after op and don’t require any now.
Hopefully my energy will improve over the next couple of months and we can then get back out on the road again.
I can count my blessings that this procedure has been life changing in the best way possible so far and it all points to me being cancer free for the foreseeable future pending good PSA results regularly.
To all of you out there that are worried about Prostectomy I hope this will give reassurances that it can go well and be a life saver and changer good luck to all of you.
This thread has certainly been very reassuring and helpful to me knowing what others have been through thank you all for posting.

 

[sonny]

CANCELLED 2 hours before appointment
Now on for next Wednesday

3rd appointment cancelled
On for next Tuesday

 

[Speve]

3rd appointment cancelled
On for next Tuesday

That’s appalling they don’t seem very organised

 

[BusyBuilder]

I started my Abiraterone hormone treatment about 6 weeks ago, also had to go on low strength steroids and statins as I have fairly high cholesterol and Abiraterone raises it.
I'm enduring hot sweats, and a little weight gain. Have blood test and phone call with Oncologist every two weeks. All going well. Have Radiotherapy in September, 20 @ 5 minutes sessions.
I'm very impressed with Raigmore Oncologist at Inverness.

 

[sonny]

Made some complaints via personal NdPal visits apparently what is needed is a half life isotope which is fast degrading isotope and difficult to produce therefore resulting in production failures with patients having to wait until they get a good batch?!

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[rod_vw]

Made some complaints via personal NdPal visits apparently what is needed is a half life isotope which is fast degrading isotope and difficult to produce therefore resulting in production failures with patients having to wait until they get a good batch?!

Just excuses for bad management! They know that they need it, when they need it and for who but simply couldn't get organised.

 

[sonny]

Absolutely go private probably get it tomorrow

 

[rod_vw]

Absolutely go private probably get it tomorrow

And probably in the same hospital!
But why should he shell out for it? I would feel a word with my MP coming on.

 

[rod_vw]

sonny , how is your Trust doing to match these NHS targets?

This is taken from the Cancer Research UK website...

Waiting for a diagnosis​

England​

NHS England has introduced a new target called the Faster Diagnosis Standard (FDS). The target is that you should not wait more than 28 days from referral to finding out whether you have cancer or not. The FDS applies to anyone with a suspected cancer, even if you have been treated for cancer in the past.

The FDS is part of a wider NHS England plan to focus more on the speed that someone gets their results and diagnosis. It applies to those people who are referred:

• by their GP for suspected cancer
• by their GP with breast symptoms where cancer is not suspected
• following an abnormal screening result from a cancer screening test

Good luck with everything.

If you are not already a member of the Macmillan Prostate Cancer forum you may consider joining, you'll be made very welcome. You'll find me on there as 'Osca2023'.

 

[sonny]

4th appointment cancelled on for next Tuesday I’ve been in touch with pal in the hospital and notified my doctor twice been to the hospital but have to be careful as half the time I can’t understand what the staff are saying although I’m sure they aren’t to bothered
Rod vw Derriford hsp don’t do well in any charts

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[gus-lopez]

Just excuses for bad management! They know that they need it, when they need it and for who but simply couldn't get organised.

I explained what the problem .is it cannot be stored .it is manufactured elsewhere and hasto be used within a few hours and is why it is despatched and the testing of it is gone whilst on the way to destination hospital.

Absolutely go private probably get it tomorrow

Most of the providers AREprivate. Alliance usually

sonny , how is your Trust doing to match these NHS targets?

This is taken from the Cancer Research UK website...

Waiting for a diagnosis​

England​

NHS England has introduced a new target called the Faster Diagnosis Standard (FDS). The target is that you should not wait more than 28 days from referral to finding out whether you have cancer or not. The FDS applies to anyone with a suspected cancer, even if you have been treated for cancer in the past.

The FDS is part of a wider NHS England plan to focus more on the speed that someone gets their results and diagnosis. It applies to those people who are referred:

• by their GP for suspected cancer
• by their GP with breast symptoms where cancer is not suspected
• following an abnormal screening result from a cancer screening test

Good luck with everything.

If you are not already a member of the Macmillan Prostate Cancer forum you may consider joining, you'll be made very welcome. You'll find me on there as 'Osca2023'.

That has increased then? back in 2014 it was 14 days if cancer suspected. Wife came under it.

Rod vw Derriford hsp don’t do well in any charts

My wife had excellent treatment there back in 2019.

 

[sonny]

So did i

 

[rod_vw]

4th appointment cancelled on for next Tuesday I’ve been in touch with pal in the hospital and notified my doctor twice been to the hospital but have to be careful as half the time I can’t understand what the staff are saying although I’m sure they aren’t to bothered
Rod vw Derriford hsp don’t do well in any charts

What a dreadful situation you are in! I suspect that I can guess what you mean by not being able to understand what the staff are saying . Have you been in touch with your MP? Maybe there is some leverage to be had via him.
Have you joined the Macmillan Prostate Cancer Forum, I'm sure that there is good advice on there, maybe even some reassurance about the delays.

Rod

 

[carolyn]

I explained what the problem .is it cannot be stored .it is manufactured elsewhere and hasto be used within a few hours and is why it is despatched and the testing of it is gone whilst on the way to destination hospital.

Most of the providers AREprivate. Alliance usually

That has increased then? back in 2014 it was 14 days if cancer suspected. Wife came under it.

My wife had excellent treatment there back in 2019.

The 2 week wait was removed by the Conservative govt on 1st Oct 23 unfortunately and replaced by an almost impossible to measure target of diagnose or exclude cancer within 28 days.

 

[sonny]

I get these notifications of the cost of not turning up for appointments , then the cost of cancellation of procedures must be astronomical I wonder if they send the staff home .
I have received really good nhs treatment throughout my life but this pet ct treatment or lack of it is abysmal and as Gus mentioned it is provided by alliance company so I would have thought with the proper nhs leverage they should be made to meet their targets or pay a penalty. Phew

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[Speve]

I’m posting this to give those a little encouragement that it is not a nice experience but can turn out to be less painful than expected.

Had my stents removed today told I have an infection and given an antibiotic injection, didn’t have any symptoms so a surprise to me however things moving forward and improving daily. I can’t believe my luck it’s been a pretty painless ordeal so far it stays that way.

Hope it gives hope to those suffering this awful disease by reading this and wish you the luck I have had so far

 

[sonny]

I get these notifications of the cost of not turning up for appointments , then the cost of cancellation of procedures must be astronomical I wonder if they send the staff home .
I have received really good nhs treatment throughout my life but this pet ct treatment or lack of it is abysmal and as Gus mentioned it is provided by alliance company so I would have thought with the proper nhs leverage they should be made to meet their targets or pay a penalty. Phew

5th cancellation for today now trying Thursday

 

[Speve]

5th cancellation for today now trying Thursday

My heart goes out to you there is nothing more stressful than not knowing and waiting

 

[Hirsch]

An update on my operation and recuperation, well I am now four weeks since my radical prostectomy and although still feeling very weak I am gradually walking a little further, I and not having to use incontinence pads during the day only using one at night just in case but so far no accidents, the bonus is I was having to carry out ISC (intermittent self catheterisation) three times a day before my op and I haven’t needed to do this at all since.
I only used pain killers for two or three days after op and don’t require any now.
Hopefully my energy will improve over the next couple of months and we can then get back out on the road again.
I can count my blessings that this procedure has been life changing in the best way possible so far and it all points to me being cancer free for the foreseeable future pending good PSA results regularly.
To all of you out there that are worried about Prostectomy I hope this will give reassurances that it can go well and be a life saver and changer good luck to all of you.
This thread has certainly been very reassuring and helpful to me knowing what others have been through thank you all for posting.

Good luck for the road to recovery Speve

 

[Hirsch]

5th cancellation for today now trying Thursday

You need some good luck too sonny. Good luck and best wishes in getting things moving and sorted satisfactorily.

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[sonny]

6th cancelled

 

[sonny]

Had scan done yesterday saw oncology consultant today so now waiting on results in maybe two weeks

 

[BillandHelen]

Bit of an update on my progress, after almost 2 years, on my brachytherapy. Edinburgh based and all treatment at the Western Hospital cancer unit, who have been great. My PSA has been v low but slightly increasing, called the “bounce”, cause unknown but consultant says should settle after 2/3 years. Sexual function all ok, been given some little blue pills for when we need a bit of help!
However urinary function has been trickier, bit uncomfortable going for a pee and I’ve had a few spots of blood in urine when I’ve been dehydrated. Being me, and looking at the worst outcome, I was worried it might be bladder cancer, discussed with my doctor last Thursday, referred to Western for a cystoscopy, got a call on Friday asking if I could go in next day, they had a cancellation! Not the most pleasant of procedures, but consultant talked me through what was on screen, thankfully bladder and all plumbing in good order, looks like the radiotherapy has made the lining on the bladder a bit sensitive. Very relieved.
Next PSA test is November, so hopefully more good news then.

 

[Chasnam]

Bit of an update on my progress, after almost 2 years, on my brachytherapy. Edinburgh based and all treatment at the Western Hospital cancer unit, who have been great. My PSA has been v low but slightly increasing, called the “bounce”, cause unknown but consultant says should settle after 2/3 years. Sexual function all ok, been given some little blue pills for when we need a bit of help!
However urinary function has been trickier, bit uncomfortable going for a pee and I’ve had a few spots of blood in urine when I’ve been dehydrated. Being me, and looking at the worst outcome, I was worried it might be bladder cancer, discussed with my doctor last Thursday, referred to Western for a cystoscopy, got a call on Friday asking if I could go in next day, they had a cancellation! Not the most pleasant of procedures, but consultant talked me through what was on screen, thankfully bladder and all plumbing in good order, looks like the radiotherapy has made the lining on the bladder a bit sensitive. Very relieved.
Next PSA test is November, so hopefully more good news then.

Lucky you had myprostate 3.5 years ago all the procedures hormone ,chemo and radiotherapy left me only able to pee 50 % so for the last 2 years had to self catheterise last 12 months recurring utis my gp finally referred me for a cyctoscopy unluckily it is bladder cancer in hospital now after a second resection on my bladder following severe bleeding

Meeting the consultant tomorrow to discuss the steps forward , I am guessing chemo again.!!.

 

[BillandHelen]

Lucky you had myprostate 3.5 years ago all the procedures hormone ,chemo and radiotherapy left me only able to pee 50 % so for the last 2 years had to self catheterise last 12 months recurring utis my gp finally referred me for a cyctoscopy unluckily it is bladder cancer in hospital now after a second resection on my bladder following severe bleeding

Meeting the consultant tomorrow to discuss the steps forward , I am guessing chemo again.!!.

Really sorry to hear that, must be dreadful.
It just seems to be a lottery re referral, treatment and waiting times. Just to round everything off I’m having my kidneys checked by ultrasound, they even fitted this round my holiday arrangements.

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[sedge]

Bit of an update on my progress, after almost 2 years, on my brachytherapy. Edinburgh based and all treatment at the Western Hospital cancer unit, who have been great. My PSA has been v low but slightly increasing, called the “bounce”, cause unknown but consultant says should settle after 2/3 years. Sexual function all ok, been given some little blue pills for when we need a bit of help!
However urinary function has been trickier, bit uncomfortable going for a pee and I’ve had a few spots of blood in urine when I’ve been dehydrated. Being me, and looking at the worst outcome, I was worried it might be bladder cancer, discussed with my doctor last Thursday, referred to Western for a cystoscopy, got a call on Friday asking if I could go in next day, they had a cancellation! Not the most pleasant of procedures, but consultant talked me through what was on screen, thankfully bladder and all plumbing in good order, looks like the radiotherapy has made the lining on the bladder a bit sensitive. Very relieved.
Next PSA test is November, so hopefully more good news then.

Yes - OH discovered this when after radiotherapy post his prostatectomy, he got up one morning and pissed what he thought was more blood than pee. Phoned GP surgery asap, GP made a phonecall and got him a cystoscopy PDQ. Operative carrying out the cystoscopy showed him the screen and said that the radio waves cause shedloads of feeble blood vessels to grow wherever they land. Also commented something daft, like coughing too hard, can cause one of these weedy thin walled blood vessels to burst, and cause panic. By this time, next day or following day, his pee was already pale pink again, so virtually healed again. But, rather obviously, any further manifestations of blood - get himself to A&E pronto to arrange a scan ot whatever was necessary.

Nothing was necessary, has never happened again, now ?8 ish years ago.