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Follow up on active surveillance

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User
Posted 27 Jun 2023 at 19:45

Just a quick update had my first follow up psa done , looking back on my records I had a psa done in Sept 2017 which was 2.7  I dont remember  the reason for the psa being taken must just have been a well man clinic. Then in Oct 22 prior to been diagnosed  it was 7.9 which set the wheels in motion, now after my first follow up on active surveillance  in  Mar 23 it has dropped down to 3.3. 

 

After talking to the specialist  nurse on the follow up phone call she suggested  that the increase in psa may have been due to an infection in the prostate. 

 

As I dont have any symptoms that would have indicated anything  to suggest PCa I suppose that I'm lucky that the increase in the psa was followed up, and  I am in the system for further checks etc, rather than waiting until the symptoms  became obvious  and treatment  was needed.

 

Just had my second psa done and came back at 3.7 after the telephone  follow up the PCa nurse was happy that everything  was stable and  now to book in for MRI and next psa and see what happens  then that's year 1 done.

 

Just had the follow up to my latest psa and annual MRI. The psa is stable  3.4 in Nov and the MRI showed up a slight inflammation . So just another psa in 3 months and have brought  forward an MRI for 6 months  to check on the inflammation, no reason was given for the inflammation  didn't think was anything  to do with the PCa but no reason given, still no change regarding symptoms  so will see what happens  next follow up.

 

Just had latest psa done and still stable at 3.6.

 

Edited by member 21 Mar 2024 at 21:44  | Reason: Further information

User
Posted 27 Jun 2023 at 19:45

Just a quick update had my first follow up psa done , looking back on my records I had a psa done in Sept 2017 which was 2.7  I dont remember  the reason for the psa being taken must just have been a well man clinic. Then in Oct 22 prior to been diagnosed  it was 7.9 which set the wheels in motion, now after my first follow up on active surveillance  in  Mar 23 it has dropped down to 3.3. 

 

After talking to the specialist  nurse on the follow up phone call she suggested  that the increase in psa may have been due to an infection in the prostate. 

 

As I dont have any symptoms that would have indicated anything  to suggest PCa I suppose that I'm lucky that the increase in the psa was followed up, and  I am in the system for further checks etc, rather than waiting until the symptoms  became obvious  and treatment  was needed.

 

Just had my second psa done and came back at 3.7 after the telephone  follow up the PCa nurse was happy that everything  was stable and  now to book in for MRI and next psa and see what happens  then that's year 1 done.

 

Just had the follow up to my latest psa and annual MRI. The psa is stable  3.4 in Nov and the MRI showed up a slight inflammation . So just another psa in 3 months and have brought  forward an MRI for 6 months  to check on the inflammation, no reason was given for the inflammation  didn't think was anything  to do with the PCa but no reason given, still no change regarding symptoms  so will see what happens  next follow up.

 

Just had latest psa done and still stable at 3.6.

 

Edited by member 21 Mar 2024 at 21:44  | Reason: Further information

User
Posted 29 Jun 2023 at 23:59

Great news, and instructive to others, that PSA has its uses but is far from infallible.

Dave

User
Posted 11 Aug 2023 at 10:45

Thank you for providing the update on your PSA (prostate-specific antigen) levels. It's positive to see that your PSA has decreased from 7.9 to 3.3 after your initial diagnosis and follow-up. Monitoring PSA levels is an important aspect of prostate health, especially for individuals undergoing active surveillance. It's a good sign that your levels are trending downwards. Continue to follow your healthcare provider's recommendations and keep up with your scheduled check-ups. If you have any further questions or concerns, don't hesitate to discuss them with your medical team.  Tell Popeyes

Edited by member 12 Aug 2023 at 05:27  | Reason: Not specified

User
Posted 11 Aug 2023 at 12:09

Hi  My doctor sent me for a PSA test after finding microscopic blood in my urine and the PSA was 2.19 so was sent for further tests.

Make sure you get as much information as possible and don't leave decisions on treatment for to long.

John.

User
Posted 14 Nov 2023 at 20:22

Hi yes still on AS just  had  bloods done for psa and booked in for an MRI  tomorrow, thats one year done since diagnosis. Have to see what's next.

User
Posted 21 Mar 2024 at 21:54

Hi Bruce just for info still on AS and psa is stable has varied from 3.3 to 3.7 over 16 months got another MRI planned soon as an inflammation  had shown up on last MRI (12 month check). The mdt meeting thought  there was no concerns but decided as a precaution  to bring forward  the MRI 

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User
Posted 29 Jun 2023 at 23:59

Great news, and instructive to others, that PSA has its uses but is far from infallible.

Dave

User
Posted 11 Aug 2023 at 10:45

Thank you for providing the update on your PSA (prostate-specific antigen) levels. It's positive to see that your PSA has decreased from 7.9 to 3.3 after your initial diagnosis and follow-up. Monitoring PSA levels is an important aspect of prostate health, especially for individuals undergoing active surveillance. It's a good sign that your levels are trending downwards. Continue to follow your healthcare provider's recommendations and keep up with your scheduled check-ups. If you have any further questions or concerns, don't hesitate to discuss them with your medical team.  Tell Popeyes

Edited by member 12 Aug 2023 at 05:27  | Reason: Not specified

User
Posted 11 Aug 2023 at 12:09

Hi  My doctor sent me for a PSA test after finding microscopic blood in my urine and the PSA was 2.19 so was sent for further tests.

Make sure you get as much information as possible and don't leave decisions on treatment for to long.

John.

User
Posted 12 Nov 2023 at 16:28

John, I am fascinated by what you write here. Surely a PSA reading of 2.19 - especially for someone who was 70 at the time - would be deemed normal. Cancer UK lists the abnormal levels as only being after:-

Age PSA level
Between 40 and 49 more than 2.5ng/ml
Between 50 and 59 more than 3.5ng/ml
Between 60 and 69 more than 4.5ng/ml
Between 70 and 79 more than 6.5ng/ml

You would have been UNDER the UK concern age for people in their 40's.

Just wondered if there were other reasons that your doctor elevated you. I can assure you the people at my surgery (where you never see the same doctor twice it seems) would NOT have.

You were - as you suggest - most fortunate I think.

I wouldn't have got an elevation were I not to have paid for a private MRI myself 'just to check' having seen a BBC news item (and my previous PSA at that point was 2.2). My current PSA (and I'm 68) is 2.75. That falls low on the 50 to 60 scale currently.

Congratulations on your success with the LDR Brachytherapy.

Trigger61 - wondered if you were STILL on AS ... and how you were progressing?  Well, I pray.  

Cheers, Bruce

Edited by member 12 Nov 2023 at 16:31  | Reason: Not specified

User
Posted 12 Nov 2023 at 16:58

Originally Posted by: Online Community Member

Great news, and instructive to others, that PSA has its uses but is far from infallible.

I totally agree Dave.

When I started active surveillance my PSA was 5.6, my cancer staging was T2a, Gleason 6 (3+3). For the next 20 months my three monthly PSA checks fluctuated between 5.4 and 6.6. and consultants were happy to let me tootle along. However after this time a follow up MRI and subsequent biopsy revealed I was, by then, Gleason 9 (4+5) T3a.

The PSA tests obviously didn't reflect my disease progression. 

I'm so glad that I badgered them into doing a follow up MRI scan, but I wished I'd done it earlier.

Adrian

Edited by member 12 Nov 2023 at 17:07  | Reason: Not specified

User
Posted 12 Nov 2023 at 17:21

Hi Bruce,

I was just renewing my 7.5 ton  licence at 70 and the DVLA require a medical so i paid the £140 for the medical and i was lucky to have a excellent doctor that picked up the microscope blood and the rest is history.

I was  PSA 2.19 Gleason 3+4 with 5 cores out of 20 positive with NO MO as i seem to remember and was offered Robotic removal at the Lister Hospital my local but managed to speak to another Specialist  that was in the hospital at the same time and he thought that brachytherapy had just as good chance but i would have to travel to Mount Vernon his Hospital for the operation. I felt that Brachytherapy had less side affect and with the help of friends on this site we jumped that way but I was still worried if i had made the right choice. If you click on my Avatar you can see my journey so far good luck.

John.

User
Posted 12 Nov 2023 at 17:32

Sorry Bruce,

Just a small add i was not offered AS and i did have a little more background on Brachytherapy as a friend of mine had Brachytherpy two years earlier and had a all clear on it,But the first Specialist i saw was pushing me towards Robotic surgery for no other reason than they had the machine at Lister.

only time will tell if i made the right decision.

John.

User
Posted 12 Nov 2023 at 18:38

Thanks so, John. I have the definite feeling that you did. Make the right decision that is.

My problem with the surgery is the fact that there is a 20% to 40% chance of chemical reoccurrence. Not great on the risk ledger in my book somehow. The margins are MUCH lower with LDR Brachytherapy. I think I read 2.7%. At least then you could turn to one of the focal therapies (say, HIFU) as a salvage follow-up. Of course there is always the small chance of colon or bladder cancer but those figures too appear low.

You are already SO far along, John, I really think you have beat the beast. I know in the US they have a cancer ledger and if you pass the five year mark you are removed from it.

One last question, how long between diagnosis was it before you actually had the LDR-B op? If I was offered it ... .just because of what I have on ... (and given I know how long now it takes to get on any practical NHS list) ... I was thinking May. That's six and a bit months from now. We'll have to see. Still - on the surface - my initial figures look promising - or so I keep telling myself. They, of course, may mean little in the end. Guess that it's the biopsy that will tell ... and heaven knows how long nowadays you have to wait for one of those in the UK. (I'm in London ... for my sins.)

Edited by member 12 Nov 2023 at 18:43  | Reason: Not specified

User
Posted 12 Nov 2023 at 18:52

There was about three and a half months between my first test showing a high PSA and having the LDR Brachy procedure. I actually deferred it for two months due to some travelling. I had the procedure done at the Stokes Urology Centre at the Royal Surrey County Hospital in Guilford and can't recommend them highly enough. 

Sometimes the NHS works well. 

Tom

Edited by member 12 Nov 2023 at 18:53  | Reason: Not specified

User
Posted 12 Nov 2023 at 20:31

Thanks so for this, Tom.

If I can - i.e., if I'm apt - and it would really depend on the results - I would delay for much the same reason. I have to be in NYC from late January to very early March and then from 22nd April to 22nd May. If it was felt that they could do it in early March - say the second week - and I could be in a position to travel and run a project, say, seven weeks later then I would opt for the second week of March. I'm supposed to be in Hamburg early in July but I could waylay that - which would give me four months from late May to concentrate on recovery from the LDR-B itself - again if it were apt.  But this is all a bit previous as I don't really know where I stand. I'm hoping for some clarity next week - i.e., hoping to find out if they deem me ready for a biopsy. (As it is my PSA density I see is currently 0.9 and the NICE cut off for a biopsy according to their charts is currently a density of 0.15 in the UK.) - Guess we will have to see how strictly they stick to those.

Edited by member 12 Nov 2023 at 20:35  | Reason: Not specified

User
Posted 12 Nov 2023 at 20:39

Hi Bruce,

I had first private medical in April 2016 and was seen within a month for diagnosis etc then the follow up to see specialists for choice of procedure but don't worry about the time factor to much as the cancer is not as aggressive as you may think and i felt i was in good hands with my professionals.My operation was booked for 25th September 2016 and i was very happy and did not worry about the time period at all. I went into Mount Vernon on a Sunday and put in a side room in the lady's ward as that's all the had ,just like being private.

I had premeds on the Monday lunchtime was wheeled across the hospital yard and after a small prick in my hand i remember nothing until recovery room all good no pain and was wheeled back to my room where i was given pain killers but not really needed.I was allowed home after i could fill a bottle and have pictures of 16 on my window sill as the nurses were frightened of them in case they had escaped radioactive seeds i may have passed.

John.

User
Posted 12 Nov 2023 at 21:56
Thanks so, John. That is very reassuring. It suggests - again, should I be applicable - that my imagined six month plan would be very much on call with you own. Moreover, I would be able to set a date a goodly amount of time in advance (always good on the NHS methinks) and stick to it.

I cannot thank you - and ALL - enough. Truly I can't.

Cheers, Bruce

User
Posted 14 Nov 2023 at 20:22

Hi yes still on AS just  had  bloods done for psa and booked in for an MRI  tomorrow, thats one year done since diagnosis. Have to see what's next.

User
Posted 14 Nov 2023 at 20:42
You may be overthinking the work & travel thing a bit - not that long ago, we had a farmer on here who had brachytherapy. He had help in for a few days immediately following the treatment but then had to just get on with it - animals & crops don't wait.Generally speaking, people don't need much recovery time post-brachy.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Nov 2023 at 23:19
Good Luck with the PSA and MRI, Trigger61. Here's so hoping that your luck holds. You read so many general accounts that they can do just that - look, seemingly, at Ian McKellen - but from what one reads here it suggests that the margins themselves might well be a tad thinner somehow.

Thanks so with your kind advice, Lyn. Point well taken.

User
Posted 21 Mar 2024 at 21:54

Hi Bruce just for info still on AS and psa is stable has varied from 3.3 to 3.7 over 16 months got another MRI planned soon as an inflammation  had shown up on last MRI (12 month check). The mdt meeting thought  there was no concerns but decided as a precaution  to bring forward  the MRI 

 
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