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Active Surveillance-How Long?

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User

Posted 28 May 2020 at 07:44

Hi Paul,

I'm 57 and was on AS for 2 1/2 years. Things appeared very stable for quite a while but PSA started rising the early part of this year and MRI picked up a small tumour. Staging upgraded to T2A.

I felt I was going to need some treatment sooner rather than later and opted for a nerve sparing prostectomy in March this year. Personally, I'm happy with my choices and things all getting back to normal. Good luck with however you decide to go forward

User

Posted 30 May 2020 at 17:11

Hi Paul:

AS was not suitable for me (due to PSA level, and trend, and number of cores). And getting treatment turned out to be a wise decision for me (see my bio).

This video presentation is old (2014 - so some things have changed such as more use of MRIs) but still very informative.

https://pccntoronto.ca/2014/06/06/video-dr-tony-finelli-20-years-in-prostate-cancer-care-where-we-were-and-where-were-headed/

You can watch the entire presentation, or just watch Part 3 (Active Surveillance) and Part 4 (fear that need for treatment will be discovered too late -- shouldn't be a problem if AS is done properly).

I'm from Canada, and the doctor in the video is my uro-oncologist. He is now head of Urology at the largest hospital (actually a multi-location hospital network) in Canada, and is also GU lead for cancer research in Ontario.

There are many men on AS who never get to the stage of needing treatment.

Edited by member 30 May 2020 at 17:27 | Reason: Correct reference to be part 3 and part 4 of video

User

Posted 04 Jun 2020 at 20:13

Hi all, a big thank you to TechGuy, Lyn, MikeW and janus381 for replying. TechGuy, I've been reading your posts and glad you're happy so far with your treatment, especially the white wine!

Got a call today from the nurse regarding my MRI scan and she said there isn't any significant change, so I'm obviously happy with the news. Because of the PSA reading, she's passing my results onto the MDT to discuss next Wednesday and will relay any further comments. I did question her regarding contrast for the MRI and she said it isn't used now, as Lyn suggested. Wondering if it's the North/South divide regarding mpMRI and MRI?

Once again, thank you.

Paulo

User

Posted 04 Jun 2020 at 20:31

Hi Paul

Hope it helped.

Great news on the MRI front.

Please keep us updated with progress.

cheers

User

Posted 04 Jun 2020 at 23:14

"I did question her regarding contrast for the MRI and she said it isn't used now, as Lyn suggested. Wondering if it's the North/South divide regarding mpMRI and MRI?"

I don't think it is a north / south divide ... it might be an M62 divide though. Our friend at Dewsbury hospital is sent to Leeds for all his diagnostics; Pinderfields, Bradford and Calderdale can all offer mpMRI, brachy, G68 etc but patients in York & Dewsbury have to be referred out of area - the Gov agenda to move services out of local hospitals into larger hubs or centres of excellence, I guess.

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

User

Posted 11 Jun 2020 at 20:10

Evening All, Had a call from the consultant today and the MDT are happy for Active Surveillance to continue. Another PSA test in approximately 4 months.

Once again, thank you to everyone who took the time to respond or read my updates.

Paulo

User

Posted 12 Jun 2020 at 00:43

👍

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

User

Posted 22 Sep 2020 at 20:25

Hi all, got a call from the nurse today regarding my PSA test results from last week, 5.4, which is up slightly from 5.1 in May, but still lower than my 5.6 at the beginning of the year. Interesting to hear my prostate had increased in size from 40 at my first MRI scan in July'19 to 48 at my scan in May'20. Maybe suggesting the PSA increase?

I've been following the progress of another member and friend of Bollinge with interest, so decided to have a slight lifestyle change. 5 weeks ago, I started eating during an 8 hour window between 9am and 5pm, which has been really easy to stick to.

I've always eaten a relatively balanced diet, as I used to cycle road race in my younger days and also competed in Time Trials up to when I was 51, but have also cut out red meat and most dairy products. I'm currently reading the book, Eat to Beat Disease by Dr William Li, which offers interesting advice.

I'm looking into taking the supplements, Turmeric/Curcumin with black pepper, Saw Palmetto and Reuteri. Has anyone taken or have any knowledge of the above?

Next PSA test in 4 months time. As always, thank you for reading .

User

Posted 22 Sep 2020 at 20:44

Be careful with supplements and only take them once you have discussed with your onco / urologist. Saw palmetto needs particular consideration as it may falsely lower your PSA, critical in AS.

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

User

Posted 23 Sep 2020 at 17:21

I am sure if you contact my mate Keith (not sure of his nom de plume, but you can search for it as he occasionally contributes here) by PM he would be happy to share with you his exercise and diet regimen (which seems to incorporate a lot of fine wines and nuts)!

His tumour has shrunk and his PSA has gone down to 6, from whatever it was.

Cheers, John.

User

Posted 23 Sep 2020 at 17:48

Hi Lyn, thank you again for your advice and reply.

Do you ever sleep?🤣🤣

User

Posted 23 Sep 2020 at 17:56

Hi John, thank you for your reply. I've seen a lengthy update on Keith's progress on a Facebook group I'm part of, but I don't want to intrude on people's privacy too much. I understand everyone reacts differently to diet and exercise, but I'm impressed with Keith's result up to now. I'm not sure i could afford his choice of wines. 😂😂

User

Posted 19 Jan 2021 at 11:42

Hi Everyone,

Just had my nurse appointment by telephone to update me regarding last weeks PSA test. It's gone down slightly to 5.1 from 5.4 last September.

Also, I've had no symptoms of prostatitis recently.

I like to catch up on the forum on a regular basis and am amazed and thankful people take the time to reply to many of the posts. Thank you to everyone, but especially LynEyre, Andy2, Bollinge, Old Barry, ChrisJ and techguy.

Paulo

User

Posted 19 Jan 2021 at 21:28

Great update Paulo

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

User

Posted 19 Jan 2021 at 21:43

Hi Paulo

thats a good result. Long may it continue!

Simon

User

Posted 20 Jan 2021 at 03:06

Quote:

Paul Craven; I'm impressed with Keith's result up to now. I'm not sure i could afford his choice of wines. 😂😂

Keith is stranded in one of his ‘pads’ in South Africa now, where there is an illogical Covid prohibition alcohol sales ban, which has been ongoing for about two months.

He’s worried because he’s down to his last 1000 bottles!

Cheers, John.

User

Posted 20 Jul 2021 at 12:04

Hi Everyone,

Had my latest update from the specialist nurse regarding my blood test taken on 1st July '21. It's gone down very slightly from 5.1 to 5.0. Another test in 4 months time. Thank you to everyone who's taken the time to read or respond to my post.

Kind regards,

Paul

User

Posted 07 Aug 2021 at 18:30

I was diagnosed with low-grade prostate cancer in 2004 via the ProtecT study. Treatment has consisted of bi-annual PSA tests and annual DRE plus Tamsulosin and Finasteride for much of that time. (until I had HoLEP surgery recently)

I continue on Active surveillance which is a feasible alternative to invasive treatments if it is monitored carefully. But, you have to be sure that you can live with the cancer rather than take the 'just get rid of it' approach.

I do accept that I have been 'lucky' in that (so far) my cancer has not spread.

David

User

Posted 07 Aug 2021 at 21:47

David, have you ever considered the possibility that the HoLEP procedure removed all of the PCa?

I discussed this with Mr A at my first post op consultation and he said it was a possibility and only an MRI could confirm this hypothesis and even then minimal cells could be missed even when using the latest MRI technology, so I guess it's a case of never taking ones eye off the ball so the speak and follow the NICE guidelines for those on AS and hope the "scores on the doors" remain stable.

Of course there's always the risk of a new "batch" of rogue cells cropping up in what's left of the prostate tissue and that comes with territory but the AS regime should hopefully pick that up.

Roger

User

Posted 11 Aug 2021 at 22:13

My husband was 8 years active surveillance and had his prostate removed 6 weeks ago by robotic surgery .

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