Prostate cancer. A useful resource.

[The general]

I am surprised you were not offered any treatment with a 3/3 score, was it T2 or T3?

Borderline, just surveillance ??

 

[fred_jb]

NHS consultants seem very keen to only offer surveillance if their judgement is that your cancer is at an early stage and might only progress slowly. The problem is that they are working on evidence from MRI scans and biopsies neither of which are infallible. I think the problem is that they work on probabilities and standard practice in deciding what to offer. This may be the most efficient use of resources on a whole population level, but not great if you are one of the exceptions for whom the standard recommendation is not suitable. They might take a different and more proactive view if it was their own prostate!

My cancer was 3+3 and T2c because it was in both sides of the prostate. Bacause of this, and my family history, I was concerned that the NHS consultant was not offering any treatment, just surveillance. My father died of prostate cancer, and my younger brother was found to have it about 8 years ago, similar to mine, and was also only offered surveillance. However, after a PSA test six months later his levels were found to have increased massively, indicating a aggressive form of the disease, and he was offered an immediate operation. Afterwards it was found that there were cancer cells on the margins of the tissue removed, so it had started to break out of the prostate. Because that meant that there was still potentially some cancer left behind he was offered radiation treatment but declined it, though happily is still well. I did not want to risk the same situation by agreeing to surveillance, so in the end reluctantly paid to go private for a prostatectomy. Analysis afterwards found that mine was actually 3+4 but was contained within the prostate.

 

[clanjones]

So thought I would add my experience to the Brachytherapy thread. I had a PSA of 13 and a Gleason score of 7 (3+4) back in April. 4 weeks ago I had 107 seeds implanted at the Western General on Edinburgh.

All of my 12 biopsy were positive for cancer with circa 60% of the left side cancerous and 30%on the right.

The procedure is as BillandHelen said but be ready for quite a painful peeing experience post op!

I have to say that post the procedure, it has been quite tough initially, due to badly interrupted sleep during the night. I now take Tamulosin in the evening and am now down to getting up about 5 to 6 times a night but it has been much worse. I do have to plan my exercise routes to make sure I have access to toilets! I am not sure how I could go back to work after a couple of days though.

The point was made to me that no two people are the same and will react differently but be aware there can be initial physical side effects which can be quite tiring.

Would I have it again? Yes I would. I was going to have to wait until next May for surgery and I was keen to get our life back. As a keen cyclist I was apprehensive about the possible side effects of surgery i.e urinary incontinence. Again that isn't necessarily a problem for everyone, I was given a statistics of 25% which was too high for me.

Had my first 20 km bike smart trainer ride at 3.5 weeks and felt great, so we are getting there -onwards and upwards!

I am more than happy to talk to anyone offline if you are having to make a decision on which course of treatment you want to follow about my experience, to date with Brachytherapy.

 

[seasideBill]

Our bodies have amazing restorative powers. It seems all procedures whether for benign enlargement or cancer have significant and sometimes alarming side effects but most settle down, maybe never like it used to be, but perfectly good enough to get on with life. I had a fairly novel procedure ‘Urolift’. Initially I thought I’d wasted £5k on the operation. However, things slowly improved and now, a few years on, and with the help of daily tamsulosin its a very manageable condition and seems stable at 2 or 3 pees a night. Bonus is, everything still works!

 

[Rapido925M]

Why would it be wrong ?

I have just been put on it, hopefully to control the amount of times I need to get up at night and help with urgency , my understanding is it works mainly on the urethra not the prostate

I do still have my prostate gland but my FIL has had his out and is on the same

View attachment 963462

I was told to take my medicine before 6am on the day of the surgery. The anaesthetist checked what I had taken and said “you won’t be needing that again”. The surgeon checked what I had taken and said the same thing.

Currently I have a catheter so there’s no irritation of the urethra and the urology nurse confirmed my belief that Tamsulosin was unnecessary when I rang the hospital.

I have an appointment on Tuesday 22nd and I will raise your comment then. Thank you for pointing out that document which I haven’t read for a decade

Gordon

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[DavidG58]

Rapido925M

Please take the collective opinion of your cancer / urology team above my own

 

[Dutch 68]

Finally got all my biopsy results back and it seems good news, as we were really due some good news we are very pleased when from the 18 samples taken , 17 where negative and 1 went back for re testing , this came back clear too, this doesn’t explain the shadows on the MRI, and when I asked questions I got vague answers like possible prostate infection ( no explanation if that needs treating) or one of multiple other causes for shadows on MRI, ( is this a regular occurrence carolyn ?) getting any answers to my questions is very difficult it seems.
Being advised to increase PSA testing to 6 month intervals

 

[pagey]

Finally got all my biopsy results back and it seems good news, as we were really due some good news we are very pleased when from the 18 samples taken , 17 where negative and 1 went back for re testing , this came back clear too, this doesn’t explain the shadows on the MRI, and when I asked questions I got vague answers like possible prostate infection ( no explanation if that needs treating) or one of multiple other causes for shadows on MRI, ( is this a regular occurrence carolyn ?) getting any answers to my questions is very difficult it seems.
Being advised to increase PSA testing to 6 month intervals

a great result for you

 

[Hettie's Crew]

Finally got all my biopsy results back and it seems good news, as we were really due some good news we are very pleased when from the 18 samples taken , 17 where negative and 1 went back for re testing , this came back clear too, this doesn’t explain the shadows on the MRI, and when I asked questions I got vague answers like possible prostate infection ( no explanation if that needs treating) or one of multiple other causes for shadows on MRI, ( is this a regular occurrence carolyn ?) getting any answers to my questions is very difficult it seems.
Being advised to increase PSA testing to 6 month intervals

When I was diagnosed last year my PSA was 4, which isn’t worrying but on DRE they found an area that felt a little harder and it also showed up on the MRI as a shadow.
The biopsies taken (14) showed no cancer in that area, 9 taken on that side and 5 on the supposedly clear side. The positive biopsy was on the clear side.

 

[carolyn]

Finally got all my biopsy results back and it seems good news, as we were really due some good news we are very pleased when from the 18 samples taken , 17 where negative and 1 went back for re testing , this came back clear too, this doesn’t explain the shadows on the MRI, and when I asked questions I got vague answers like possible prostate infection ( no explanation if that needs treating) or one of multiple other causes for shadows on MRI, ( is this a regular occurrence carolyn ?) getting any answers to my questions is very difficult it seems.
Being advised to increase PSA testing to 6 month intervals

Very common. Great news. There are lots of things that mimic prostate cancer on MRI and that’s why they have to do biopsies. Prostatitis (infection or inflammatory) is just one. Most don’t actually need treatment if they’re painless but sometimes the biopsies introduce infection.

Don’t worry, just celebrate!

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[DavidG58]

I remember reading in paperwork given to me after my positive diagnosis that only 1:6 biopsies come back positive for cancer

 

[Dutch 68]

Very common. Great news. There are lots of things that mimic prostate cancer on MRI and that’s why they have to do biopsies. Prostatitis (infection or inflammatory) is just one. Most don’t actually need treatment if they’re painless but sometimes the biopsies introduce infection.

Don’t worry, just celebrate!

Thank you Carolyn

 

[DavidG58]

Anybody else suffer from a cramp sensation in bladder area, I am assured that my RT doesn’t go that high so can’t be that

Another patient on exactly the sane treatment told me today via WhatsApp that he got cramps in his last week, He finished last Thursday and was told the same thing

Last day tomorrow , it’s gone quickly but glad it will be done with

 

[rod_vw]

Anybody else suffer from a cramp sensation in bladder area, I am assured that my RT doesn’t go that high so can’t be that

Another patient on exactly the sane treatment told me today via WhatsApp that he got cramps in his last week, He finished last Thursday and was told the same thing

Last day tomorrow , it’s gone quickly but glad it will be done with

I didn't have any of that sort of cramp although I do have cramp in my leg(s) during the night occasionally but had that long before any thoughts of PC. None of that changed during or since the RT.

 

[Grummyb]

I've been to the gp today because I'm worried I've started peeing in the night and only once maybe twice nut during the day its constant I went 9 times between 6am and 1pm today I had the figer treatment and am now going fir blood test nut the reckons 75% of positive blood results are wrong and 15% of negative ones are also wrong its a bloody minefield by what he said but hopefully I will be ok but at least I've taken the first step

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[pagey]

Anybody else suffer from a cramp sensation in bladder area, I am assured that my RT doesn’t go that high so can’t be that

Another patient on exactly the sane treatment told me today via WhatsApp that he got cramps in his last week, He finished last Thursday and was told the same thing

Last day tomorrow , it’s gone quickly but glad it will be done with

Don't do what I did after my last rt my wife and me left St barts walked through the market to the pub in Farringdon Rd had a curry and 2 large glasses of merlot then left to go to st pauls Station all of a sudden total panic run in to a bar to use the toilet and only just made it with about 5 seconds to spare ,laugh about it now but it panic at the time

 

[DavidG58]

Don't do what I did after my last rt my wife and me left St barts walked through the market to the pub in Farringdon Rd had a curry and 2 large glasses of merlot then left to go to st pauls Station all of a sudden total panic run in to a bar to use the toilet and only just made it with about 5 seconds to spare ,laugh about it now but it panic at the time

We were planning similar but think I will swerve the curry

 

[DavidG58]

Grummyb

Thankfully your doctor is at least sending you for the blood test , three years ago my doctor refused saying there was no point they are not accurate enough

Thankfully 2 years later a different doctor wasn’t so short sighted

I do wonder what they would do if they had these symptoms , would they ‘not bother’ with a test

All the while we have nothing else to test by how dare they play god, this why some dont get caught earlier enough

 

[fred_jb]

Yes, there has been an article in the paper by an MP who described a similar experience of having to demand a PSA test even though he had a family history of PC and has now undergone radiation treatment. He went on to outline how with the much improved MRI scans the view that PSA testing is pointless and leads to unneeded treatment is completely outdated. Hopefully a few GPs will have read the article!

 

[The general]

Don't do what I did after my last rt my wife and me left St barts walked through the market to the pub in Farringdon Rd had a curry and 2 large glasses of merlot then left to go to st pauls Station all of a sudden total panic run in to a bar to use the toilet and only just made it with about 5 seconds to spare ,laugh about it now but it panic at the time

Deffo pushing the boundaries there

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[pagey]

Deffo pushing the boundaries there

yea living on the edge

 

[Rapido925M]

Yes, there has been an article in the paper by an MP who described a similar experience of having to demand a PSA test even though he had a family history of PC and has now undergone radiation treatment. He went on to outline how with the much improved MRI scans the view that PSA testing is pointless and leads to unneeded treatment is completely outdated. Hopefully a few GPs will have read the article!

Surely an MRI scan is much more expensive and time consuming than a PSA test. Far fewer people would be checked so the death rate would probably rise. PSA as an initial screen then MRI for those found to have potential problems before initiating treatment: I would suggest that is what I had!

Gordon
(Actually I had 2x PSA at 5 minutes each in the local surgery within a month of each other before moving to the hospital 25 miles away for an hour's appointment.)

 

[rod_vw]

Yes, there has been an article in the paper by an MP who described a similar experience of having to demand a PSA test even though he had a family history of PC and has now undergone radiation treatment. He went on to outline how with the much improved MRI scans the view that PSA testing is pointless and leads to unneeded treatment is completely outdated. Hopefully a few GPs will have read the article!

Yes, I had to get very insistent with my GP's reception before I got my first PSA test eighteen months ago. Now I'm nine weeks post RT!

 

[fred_jb]

Surely an MRI scan is much more expensive and time consuming than a PSA test. Far fewer people would be checked so the death rate would probably rise. PSA as an initial screen then MRI for those found to have potential problems before initiating treatment: I would suggest that is what I had!

That is exactly what is being advocated. So, PSA and/or DRE as the initial screening followed by an advanced MRI scan. Only if indicated by the scan do you then go on to have a confirmatory biopsy. For example, my first referral for a scan came out negative. It was only a year later that a second referral was followed by a positive scan and then a biopsy.

Apparently this weeds out 79% of what would be false positives if going by PSA alone, and avoids all those people having to endure an invasive biopsy which they might have done in the past. Unfortunately many GP's views are still rooted in the past and are against PSA tests based on what is now a false perception of them inevitably leading to unnecessary treatment.

 

[Hettie's Crew]

Only if indicated by the scan do you then go on to have a confirmatory biopsy.

My cancerous cells were only identified by biopsy.
Sequence of events:
I requested a PSA, came back as 4, GP referral to Urology, DRE by Urology team felt slight abnormality on one side, MRI showed the abnormality, referral for biopsies (14).
Result = Cancer cells on the other side that felt normal and showed nothing on the MRI.

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[fred_jb]

My cancerous cells were only identified by biopsy.
Sequence of events:
I requested a PSA, came back as 4, GP referral to Urology, DRE by Urology team felt slight abnormality on one side, MRI showed the abnormality, referral for biopsies (14).
Result = Cancer cells on the other side that felt normal and showed nothing on the MRI.

Yes, only a biopsy can positively confirm cancer, though it can also fail to confirm a cancer which actually exists. However that is less likely now that they use the MRI scan superimposed on a live ultrasound picture to aim the biopsy needles at the suspicious areas.

The point I was making was that if a DRE or MRI didn't show anything of concern, then a biopsy would not be performed. Hence the argument that widespread PSA screening would lead to many unneeded biopsies is these days unfounded, but sadly many GPs seem to be living in the past regarding this.

 

[BillandHelen]

For those with travel insurance through Nationwide account, I just renewed this morning through Aviva, their new supplier. For the medical upgrade for my prostate cancer, I declared that though my procedure was over a year ago I still went for 6 monthly blood tests, they asked if my treatment was between 1 and 3 years previous, additional cost for cover was £30, so nothing in the round but not quite sure how it could ever lead to a claim.
But in summary, they will cover you and it’s not expensive.

 

[rod_vw]

For those with travel insurance through Nationwide account, I just renewed this morning through Aviva, their new supplier. For the medical upgrade for my prostate cancer, I declared that though my procedure was over a year ago I still went for 6 monthly blood tests, they asked if my treatment was between 1 and 3 years previous, additional cost for cover was £30, so nothing in the round but not quite sure how it could ever lead to a claim.
But in summary, they will cover you and it’s not expensive.

Our travel insurance is with the Nationwide and we were in the same position as BillandHelen . My radiotherapy had only completed three weeks before renewal so it was assessed a bit differently plus my age of 75 so the additional cost was £110.

 

[Hirsch]

I had the OAR spacer gel procedure last Friday. Had to pay for it myself but as i have ulcerative colitis ( in remission) i wanted to give myself the best chance of avoiding long term side effects. CT planning appointment next Wednesday. Guess they'll tell me next week when the rt will start. Just want it done now. Diagnosed February 2023

 

[68c]

Got the all clear today, had prostate removed five months ago. Still wearing pads but now only leak if lifting something heavy, such as a 25kg bag of cement,or bending a lot. Dry at night so very happy.

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