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Today got official confirmation having prostate cancer....

User
Posted 24 Feb 2021 at 18:21

Firstly, a little bit of background history to my situation.

About 10 or so years ago I would be around 50-ish. My PSA level was high have risen to 17.5.

Went through the usual Urology biopsy (different to how it's done now) and was told, by the consultant, everything was okay. However, they would from time to time asked for PSA blood test.

Over the next 10 years, from time to time, I would have blood test for PSA. These will be sporadic as I wasn't too bothered. It seemed to only make things worse by being told it's above a certain level. Then a problem with my partner becoming ill with cancer. I put myself into looking after my partner first. Time passed and in July last year and also January this year I had a PSA blood test and showed to be high and the one in January was at 12 point something or other. This was followed up by an MRI. The MRI came back showing a problem on the prostate.

Wasn't too concerned however the doctors were concerned. So three weeks ago I had a biopsy done which wasn't very nice like a mediaeval practice!

However, the Consultant I spoke to today said it is a low risk prostate cancer, which should not present problems for the immediate future. Would need "active surveillance" with blood test and MRI scans. I am told am still young (62). Also, that a template biopsy would be needed to map the whole of the prostate to check for areas that might be harbouring cancer cells! This does concern me as doing this kind of intervention might make things worse with the cancer being spread? Who knows?

That's my story, so far.... 

Edited by member 01 Mar 2021 at 11:23  | Reason: Not specified

User
Posted 24 Feb 2021 at 19:07
Millions of biopsies are done around the world each year and there is no evidence that TRUS biopsy or template biopsy leads to needle tracking (spread) in a man with a small cancer. There have been a few alleged cases of needle tracking in America in men who already had extensive cancer in the prostate but if true it is vanishing rare.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Feb 2021 at 20:52

Hi Keith,

It's easy to understand someone not wanting a biopsy if they think they can avoid it.  No procedure is without risk although there is a risk in not having it.  I've read that a template biopsy is less risky as it doesn't go through the colon.  Although a full anaesthetic has some risk.  Many patients prefer the template biopsy because it's more thorough.   The choice is with the patient.

All the best, Peter

User
Posted 24 Feb 2021 at 21:09
Seeing cancer cells under a microscope is the only way to know what type of cancer you have and how aggressive it is. Nobody likes the thought of having a biopsy, but it's a low-risk procedure and it really is essential for diagnosis.

Best wishes,

Chris

User
Posted 24 Feb 2021 at 21:44

It isn't an american term, it is the way that prostate cancer is graded after they have looked at your samples under a microscope. I am sorry if your consultant hadn't discussed that with you but almost every man with prostate cancer is allocated a Gleason score. If you have been told that you are suitable for active surveillance then you must be a Gleason 6 (3+3) or at most a G7 (3+4). You could ask your consultant or urology nurse to clarify that; these are the kind of details that help you to make decisions about whether to have treatment. It would also be a good idea to phone the PCUK nurses (number at the top of the webpage here) and ask them to send you the toolkit; this explains all the diagnostic info and benefits/ risks of different treatments plus how active surveillance should be properly managed

Edited by member 24 Feb 2021 at 21:48  | Reason: Not specified

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

User
Posted 25 Feb 2021 at 08:22

I would suggest asking for a copy of your biopsy report. This will tell you your Gleason score and staging. In fact ask for copies of all the documents relating to your case. You're entitled to them and you'll be in a much better position to make an informed decision knowing all the facts.

Best wishes,

Chris

Edited by member 25 Feb 2021 at 08:22  | Reason: Not specified

User
Posted 25 Feb 2021 at 12:55

Might be worth enquiring whether your GP's surgery has a facility for viewing your records online, Keith. Most do these days.

Best wishes,

Chris

 

User
Posted 25 Feb 2021 at 16:48
Good result!

All the best,

Chris

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User
Posted 24 Feb 2021 at 19:07
Millions of biopsies are done around the world each year and there is no evidence that TRUS biopsy or template biopsy leads to needle tracking (spread) in a man with a small cancer. There have been a few alleged cases of needle tracking in America in men who already had extensive cancer in the prostate but if true it is vanishing rare.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Feb 2021 at 20:52

Hi Keith,

It's easy to understand someone not wanting a biopsy if they think they can avoid it.  No procedure is without risk although there is a risk in not having it.  I've read that a template biopsy is less risky as it doesn't go through the colon.  Although a full anaesthetic has some risk.  Many patients prefer the template biopsy because it's more thorough.   The choice is with the patient.

All the best, Peter

User
Posted 24 Feb 2021 at 20:58

Same old story choice is down to the patient. No guarantees by hospital professionals doctors consultants and so on. It's all a minefield of we don't know. So there's always been reticence about hospitals doctors never giving you an exact answer. Considering the last two years I have also been through a hell of a lot and that wasn't with my health!

Thanks for your input it's still important.

 

 

 

User
Posted 24 Feb 2021 at 21:09
Seeing cancer cells under a microscope is the only way to know what type of cancer you have and how aggressive it is. Nobody likes the thought of having a biopsy, but it's a low-risk procedure and it really is essential for diagnosis.

Best wishes,

Chris

User
Posted 24 Feb 2021 at 21:12
I think he has had a biopsy and been given a Gleason score - the issue now is they want him to have another more detailed biopsy before embarking on AS.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Feb 2021 at 21:16
Oh, I see. I think that's relatively common. I had a TRUS biopsy and then later on a template biopsy under GA. Nothing to it other than spectacular bruising in the couple of weeks afterwards.

Chris

User
Posted 24 Feb 2021 at 21:28

Have no idea what a Gleason is until I looked it up looks like it's an American term I'm not sure but it's never been mentioned to me by my consultant or at any time in the last 10 years or so. So it's very confusing when people start using terms that are not British.

Very confusing

User
Posted 24 Feb 2021 at 21:44

It isn't an american term, it is the way that prostate cancer is graded after they have looked at your samples under a microscope. I am sorry if your consultant hadn't discussed that with you but almost every man with prostate cancer is allocated a Gleason score. If you have been told that you are suitable for active surveillance then you must be a Gleason 6 (3+3) or at most a G7 (3+4). You could ask your consultant or urology nurse to clarify that; these are the kind of details that help you to make decisions about whether to have treatment. It would also be a good idea to phone the PCUK nurses (number at the top of the webpage here) and ask them to send you the toolkit; this explains all the diagnostic info and benefits/ risks of different treatments plus how active surveillance should be properly managed

Edited by member 24 Feb 2021 at 21:48  | Reason: Not specified

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

User
Posted 24 Feb 2021 at 22:44

Thank you for the info.

 

Perhaps it's not even considered here to be used at my stage or they simply don't use it at the Urology Dept here.

 

Edited by member 24 Feb 2021 at 22:46  | Reason: Not specified

User
Posted 25 Feb 2021 at 08:22

I would suggest asking for a copy of your biopsy report. This will tell you your Gleason score and staging. In fact ask for copies of all the documents relating to your case. You're entitled to them and you'll be in a much better position to make an informed decision knowing all the facts.

Best wishes,

Chris

Edited by member 25 Feb 2021 at 08:22  | Reason: Not specified

User
Posted 25 Feb 2021 at 09:22

Thank you for the suggestion, however, I had already requested all details of reports to be sent to me not just my GP. 

GP's get it electronically but I, the patient, have to wait for the post!!!! Please why not send it via email or a password protected manner!!! Baffles me.

Anyway, should get to know things properly but it's going to take time.

User
Posted 25 Feb 2021 at 12:55

Might be worth enquiring whether your GP's surgery has a facility for viewing your records online, Keith. Most do these days.

Best wishes,

Chris

 

User
Posted 25 Feb 2021 at 15:13

Amazingly loads documentation arrived in the post today and I now know my Gleason score - 3+3=6 Grade 1.

So there's nothing to worry about. I've put the documentation aside as it makes me feel sick looking at it. Fact one booklet I've been stapled through with heavy duty staples in the middle of 4 or five staples what a waste of effort.

Been doing some garden tidying. Nice to be in the sunshine on warm day like today.

All the best everybody.

 

User
Posted 25 Feb 2021 at 15:15
👍
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Feb 2021 at 16:48
Good result!

All the best,

Chris

User
Posted 25 Oct 2021 at 21:04

It's several months since I posted. 

However, this is an update. PSA 14.4 August 2021 - and has increased steadily up to that date! Earlier in the year, an MRI and local biopsy revealed cancer in the prostate to one side.

15th Sept 2021 I had a transperineal template biopsy under gen anesthetic 

Results on 20th October 2021 and a slight increase in cancer cells, therefore, changing what needed to be done to combat cancer spreading outside of the prostate.

Given plenty of details by the consultant and after by a nurse regarding whether I went for hormone and RT or prostatectomy.

Weighing up my situation and options I have today told the hospital I will have the surgery to remove my prostate. This is what the consultant was suggesting as the best situation for me.

It's now a wait of 6 to 8 weeks before the op.

There have been no letters about actual details since my recent visit to see the consultant so expect the letters soon.  
Already had a detailed questionnaire about very personal matters.

Vacuum tumescence service and continence service are also now aware.

My flow rate has been very good.  Erections, disappointing! Hope that the flow rate doesn't become a serious issue. Erections and orgasm, perhaps not hope too much from those after things settle!!! All a bonus! Perhaps the tablets suggested taking regularly (Sildenafil).

All down to the wait and the recovery from now on.

Since the new diagnosis I have become calmer and positive :-)

 
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