Active Surveillance-How Long?

User

Posted 24 Nov 2023 at 09:23

Thanks Lynn

The original diagnosis was G3+4=7. It was a second opinion from Addenbrookes when I elected for RARP that downgraded it to 6. It was my dad that had PCa, but I can’t remember his age when they diagnosed him.

User

Posted 24 Nov 2023 at 10:24

Originally Posted by: Online Community Member

I would be concerned if you were my dad or partner - 11/20 doesn't sound like a low burden disease even if you are G6(3+3) - have you considered a second opinion with a different urologist?

Family history isn't so significant unless the family history is of direct male relatives diagnosed with PCa in their 40s / early 50s, direct male / female relatives diagnosed at a young age with breast cancer and / or female relatives with endometrial / uterine cancers. Most men get prostate cancer if they live long enough.

Morning Lyn.

According to this site, unless I've misinterpreted it, if your father or brother had the disease, you are two and a half times more at risk of getting it. That risk, then increases even further, if these relatives had it before they were sixty. To me, that's a significant risk increase.

https://prostatecanceruk.org/prostate-information-and-support/risk-and-symptoms/are-you-at-risk?scrollTo=family-history-and-genetics

Adrian

Edited by member 24 Nov 2023 at 10:45 | Reason: Not specified

User

Posted 28 Mar 2024 at 19:22

Hi All, Update on my AS journey. PSA on the 13.02.24 7.0, down from 8.1 in November.

Another flare up of Prostatitis mid March , but my GP wouldn't prescribe Ciprofloxacin, which has always helped, quoting risk of disabilities. Prescribed Trimethoprim instead. Urinary symptoms gradually worsened and ended up with Urinary Retention on Saturday 23rd March. I've heard how serious this can develop to, so a trip to Pontefract hospital emergency walk in centre on Saturday night. Couldn't believe just 3 people waiting and was seen by an excellent nurse. He tried to catheter twice, but it wouldn't go past my prostate. They managed to find a rigid one and another nurse was successful with the procedure. It was very painful, but when inserted, the relief was instant. After a discussion with the Doctor, around whether to keep me in for the night, I was allowed home. He couldn't understand why i hadn't been prescribed Ciprofloxacin.

The catheter is to remain for approximately 2 weeks and I've got a follow up appointment on Friday 5th April.

This is the first time I've been catheterised. It's got a tap for me to release urine and no bag. I've still been getting urgency and if i'm too slow to open the tap, urine appears to bypass the catheter. Not sure if this is normal. I've left a message at the hospital and am awaiting a response.

Ironically, I had an appointment yesterday with a senior nurse at my GP practice and was prescribed Cipro.

I'll keep you updated.

Have a great evening!

Paulo.

User

Posted 28 Mar 2024 at 19:48

Sorry to hear about the Prostatitis. Urine bypassing your catheter is by no means unusual and in your particular case it's almost inevitable if you are getting urgency when the tap is closed. Following my prostatectomy I suffered episodes of urinary retention and had to have emergency catheterisations. The catheter used included a bag. (just the same as the one fitted during the surgery). I'm not too sure why your catheter has a tap but no bag. Perhaps they are wanting your bladder to fill and empty as normal. I was eventually provided with some self catheterisation kits to avoid mad dashes to the A&E. The kits are intended to be 'one trip ponies' so there are no taps or bags.

User

Posted 28 Mar 2024 at 22:33

Paulo, I agree with what Chris has said. I have had a suprapubic catheter for over six years.when first fitted I had a tap and bag, the purpose of the tap was to keep the bladder operating in a near normal way. The advantage of the bag was instant relief if I had waited too long. It is and was easy to leave the tap open and be on free drainage. My bladder was shrinking so I was already on a slippery slope. Are you wearing a pad to soak up any small leaks ?

A catheter can cause spasms and be very painful, if you only have the catheter for a couple of weeks it is probably not worth having medication. I tried most of the anti spasm meds and finally finished up on Regurin aka trospium chloride.

Hope things improve.

Thanks Chris

User

Posted 16 May 2024 at 16:49

Hi All

First of all i just want to thank you all for the very informative discussions on AS.

I did my last posting in 2020 when i was diagnosed and was preparing to go for RT. As part of my preparation, i was put on HT and began Pelvic & Bladder Training Exercises. Unfortunately for me it soon emerged that i had an overactive bladder problem which has delayed my treatment for the past 3.5 years.

I am now about to start AS and a lot of my concerns are being answered as i have been going through the postings here so far.

I wish you all well as we continue our AS treatment journey together.

KB2020

Edited by member 16 May 2024 at 16:51 | Reason: spelling check

User

Posted 16 May 2024 at 17:39

Originally Posted by: Online Community Member

I am now about to start AS and a lot of my concerns are being answered as i have been going through the postings here so far.

If you meet the criteria for AS then that's the way I'd always go. Best of luck mate.

User

Posted 23 May 2024 at 21:07

Hi All, another update. Had my TWOC, Trial without Catheter, on the 5th April and wasn't passing enough urine, so showed how to self cathetise, if i feel the need. I'm still able to urinate, but flow is quite poor. Using 1 or 2 catheters per day. Had my regular PSA test on the 10th May 2024 and was expecting a big jump, up from 7.0 to 29.8 .

I've been booked in for an appointment on 30th May, so fully expecting they recommend prostatectomy. Let's see.

Have a great evening, everyone!

Paulo.

User

Posted 21 Sep 2024 at 21:29

Hi All, Bit of an update, can't believe it's been over 5 years since I started this thread. Because of my urinary issues and self cathetising, causing high PSA readings, which in turn made it difficult to monitor the cancer, I had robotic surgery on the 19th August 24. The surgeon said the prostate was difficult to remove and was sticky at the edges and full of puss. Took him longer than usual. I went down at 12.45pm and ended up in recovery at 6.30pm, not sure if normal or not. He also inserted 2 urinary stents to protect my kidneys. Never heard of them before the operation. I had a TWOC on 4th September and after numerous cups of water and waiting 3 hours, still no joy. The stomach pain then became unbearable and a catheter had to be re inserted. The doctor thought it might have been bladder spasms. I'm recovering a little, but still struggling with the occasional stomach pain. Another TWOC on Monday 23rd Sept and stent removal the same day. Being quite fit, thought the recovery may have been a little better, but suppose we're all different.

Have a great evening everyone.

Paulo

User

Posted 24 Sep 2024 at 16:43

Saw the title of this and was reading several pages before I realised it was 5 years old!

I was going to say I was on AS for 18 months, before electing (today) to have it all scooped out ( in a couple of months time, hopefully.) Prompted by PSA rising to 10 on the last test and Uro consultant's recommendation.

HT & RT is an option, but I want it out now, tired of blood tests and worrying if it's growing. Will just deal with the side effects as they come.

I just felt that AS was delaying the ineviteable, better to get rid now, while I'm 'young' and fit enough to deal with it.

I'm age 66, 3+4, all contained.

Hope your recovery goes well Paulo.

User

Posted 24 Sep 2024 at 17:31

Originally Posted by: Online Community Member

HT & RT is an option, but I want it out now, tired of blood tests and worrying if it's growing.

Hello mate.

I don't want to pee on your bonfire, but you'll still have the nuisance and anxiety of PSA tests for at least two years after surgery. I was on AS for nearly two years, but was less worried about the PSA tests then than I am now, when a rise would indicate recurrence.

User

Posted 05 Jan 2025 at 17:25

Hi all, thought I'd update my AS journey, since i started this thread, over 5 years ago and ultimately leading to RALP. The TWOC and stent removal didn't go to plan on 23rd Sept'24. The consultant couldn't get into my bladder to remove the stents and has recommended the procedure is conducted under GA. He also said, the bladder neck would probably need an incission and scar tissue removal.

I finally got a date for the operation at Pinderfields on Thursday 2nd Jan'25, so I've had the catheter in since 19th August'25, apart from 2 short TWOCs. Urinary stents removed and bladder neck attended to, catheter back in for 1 to 2 weeks, but with a wider diameter one. It's quite sore, but managable. Apparently, i may have to self cathetise to stop a re-build of scar tissue. Oh, the irony. I had the RALP mostly because i was having to self-cathetise!

I've got physio booked for when the catheter is finally removed, Tadafill and penile pump at the ready! LOL!

All the best and a Happy New Year to everyone,

Paulo

User

Posted 22 May 2025 at 10:42

Only another 6 months and I'll have achieved 10 years on AS with a stable PSA hovering around 2.5 for the last 5 years with no upward trend.

Good luck and best wishes to all you guys wherever you are on your PCa journey and keep positive thoughts going no matter how difficult the road ahead may appear.

Roger

User

Posted 22 May 2025 at 11:16

Fabulous news Roger! Thanks for posting. 👍

I feel AS gets unfair press on here. Yet statistically, it's be shown to be a good treatment option for thousands of men with safely prostate confined, low grade cancer.

We probably don't get to hear about long term AS success stories like yours, because those benefitting from it will be getting on with their lives unscathed, and aren't as thoughtful as you, to bother posting.

User

Posted 27 May 2025 at 14:13

I did 8 years on A/S, my psa was steady for 7 years then started to rise slowly, I was diagnosed at 50 with 3+3 and a psa of 6.8, my psa was hovering around 4, it then started to rise to 5.5, my Gleason score then changed to 3+4 After having an MRI it was decided the cancer had started to become more conspicuous . I always said to myself I would always go the surgery route if things had started to change. I was always well looked after on A/S with blood tests every 4 months mri every year and biopsies, if things hadn’t changed I would have still stayed on A/S. I had my surgery this year on 30th April 25. Surgery went very well, just dealing with the usual after effects of the operation. All the best to everyone out there.

User

Posted 27 May 2025 at 15:52

The comment from Paul is very similar to my husband's story - 10 yrs AS then gradual rise in PSA with decision for RARP 3wks ago (May 2025) age 73.

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