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Active Surveillance advice please

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User
Posted 18 Apr 2024 at 19:23

I've just been diagnosed with cancer following a biopsy. Gleason 3 + 4, T2 N0 MX. Please see profile for more details.

The diagnosis was given by an extremely helpful nurse. I have an appointment to see a urologist mid May. The nurse believes I may be steered towards active surveillance because only 2 from 16 cores were cancerous.

I'd be very interested in hearing from anyone who has followed the active surveillance option, particularly those who were forced to take further action because their situation worsened.

I'm still hoping to have my nocturia symptoms resolved - I get up three times nightly to urinate and regularly have trouble getting back to sleep. The Itind procedure I underwent has, to date, not resolved this (Google 'Itind' if you wish to know more.) Perhaps given that I have now been diagnosed with cancer I should be less ambitious?

Thanks for your help.

User
Posted 19 Apr 2024 at 20:51

Hi. I am currently on Active Surveillance following my biopsy results in January. I was Gleason 3+4, T2 CPG2, had 4 positive cores from 28 & only 10% was grade 4.

i was offered all options but as mine was localised, contained & slow growth I chose AS as why have something radical doing now if it’s not necessary and might not ever cause a problem or not for many years! 
there’s quite a lot of guys at my local monthly prostate cancer support group that have been on AS for 8/10 years or more.

im have three monthly PSa blood tests & follow up consultation in July followed by another MRI December. If you have the mindset to go on AS then do it, I’m just getting on with daily life and not worrying about being on AS, life’s to short as it is to stress about it, positive mind helps immensely dealing with it.

good luck with whatever you do and I’d suggest speaking to the specialist nurses on the prostate cancer UK site, they are amazing & will give you great advice.πŸ™‚

User
Posted 19 Apr 2024 at 22:44

In short: I was 3 years on AS.

Starting initially with PSA 5 at 62 years old

A year later increased to 6.5. 

           DRE and Biopsy was negative. Diagnosed infection and prescribed antibiotic that brought down PSA to 5.0

A year later PSA rose again to 7.6. ُ

           DRE & MRI negative. Assuming it was infection, Prescribed antibiotic again that brought down PSA to 6.3

16 months later, PSA 11,

           T3a, biopsy negative. Biopsy again that showed 3+4.

Had robotic radical prostatectomy 2 years ago 

            pathology results T2c, G7=3+4

 

My early tests did not show much to worry about so I stayed on AS. But I always wonder if:

  1. My one of my early tests were more accurate (positive) would I have chosen AS or not?

  2. Whether my AS resulted to progression of cancer?

I am also stunned with so many false tests results:

4 negative DRE by 4 different urologist?

Two negative biopsies.

One negative MRI - T3a that (fortunately) turned out to be T2c post-surgery pathology,

The only true test result was 3rd biopsy that turned to be the same after surgery (G7).

 

My 1st advice is, make sure your test results are as accurate as possible before deciding what to do. Even if needed go private and ask for 24 core rather than normal 12 cores. Do your MRI with much advance machines rather than old, outdated ones.

2nd advice especially if you are over 70 to get ride of it sooner than later. The chances that you could have surgery get thinner as you get older.

Best Luck

Fred

 

 

User
Posted 03 Jun 2024 at 16:17

Just got my 28 core biopsy feedback today. Big C in 5 cores, worst case 6mm (45%) in one of the cores. Gleason 3+3. Had sort of convinced myself I had Prostatitis, as had a few symptoms and have taken Tamulosin for about 7 years (I'm 64), for nocturia. PSA has gone from 5.2 to 5.45 in about a month. MRI showed x1 PIRADS 4 and x1 PIRADS 3. Turns out the PIRADS 4 is the problem area. Wasn't offered a copy of my Histology Report today, but will follow up. I'd already decided to go (initially at least) AS route. Next PSA test in 3 months, also further discussions with Surgeon and Radiographer to come. Specialist Nurse who gave me today's news suggested that Brachytherapy a non-starter as Gland is 66cc?? A bit dismissive when I raised subject of Hormone Therapy to reduce Gland size and said, would only be done if Urinary Issues got worse??. This is something else for me to research/get another view on I think. Also told AS is regular PSA, and furthe Biopsies in circa 18 months, if PSA dictates. I was told further MRIs weren't their policy?? Again, I need to follow this up, as it's contradictory to what I've read elsewhere. Touchwood, I'm reasonably healthy and hoping to ride the storm till focal therapies such as HIFU etc become more common place. Finally, for now, good luck to all our readers, wherever you are on the journey.

User
Posted 18 Apr 2024 at 22:18

Hi Keith.

My view is, why fix something that isn't broken?

AS is being used more often

https://www.cancer.gov/news-events/cancer-currents-blog/2022/prostate-cancer-active-surveillance-increasing

You appear to have low grade, low volume prostate cancer. If it's well contained within the prostate, I would have AS

My only caveats would be, ensure that you have follow up PSA tests, MRI scans and if necessary follow up biopsies.

I believe that only about 30% of men who chose AS, have disease progression and  later need radical treatment. They seem good odds to me. Unfortunately I was in the 30% who's AS failed, and I ended up having surgery but that doesn't alter my opinion.

I must also advise you that AS needs you to have the mindset to cope with knowing that you have the disease,  but being content that you are safely being monitored.

Have you been prescribed anything for your nocturia?

Best of luck mate and nice to meet you.

 

 

 

Edited by member 18 Apr 2024 at 22:42  | Reason: Additional text

User
Posted 18 Apr 2024 at 22:38

I was prescribed Tamulosin for about 7 years prior to diagnosis. It seemed to help with nocturia.

User
Posted 19 Apr 2024 at 10:02

Hi, I was had similar numbers to you  at the age of 70 Gleason 3+4=7 t2 no mo and 5 cores out of 20 positive .

I was offered robotic surgery or Brachytherapy  but no AS and went for Brachytherapy.

All good so far coming up to 8 years in September.

My only comment on AS is you need to talk to members here that have taken the AS route and left it to long and have poorer results later on and maybe leaving further treatment to late.

Good luck John.

User
Posted 19 Apr 2024 at 11:08

Hi Keith, I had BPH and none of the medications helped so I opted for a TURP and that had me peeing like a schoolboy again and sleeping through the night. However, the post TURP pathology showed some Gleason 3+3 and a later biopsy confirmed that but  in just 2 cores. My urologist was fairly confident that my condition would not progress but sensibly put me on AS. Two years later, my PSA was reading 3.9 (take into account that I had a much reduced prostate from the TURP). I then had an MRI (pirads5) and a targeted transperineal biopsy that showed Gleason 3+4 in 15 of 20 cores taken and I was categorised as T2b. I opted for RARP with Neurosafe and the post op pathology upgraded me to T3a with, thankfully, clear margins. That said, my last three PSA readings have increased, albeit still at a low level but nevertheless concerning. In your case, AS may be a reasonable first choice but you must be sure - and insistent if necessary - that at the very least you have quarterly PSA checks and an annual MRI.

Good luck, Peter

User
Posted 19 Apr 2024 at 11:27

Hi Keith,

As far as I'm aware I've never said I recovered from incontinence quickly..

My surgeon told me he was particularly pleased with how the uretha reconnection had gone during the op.

However, although I was completely dry through the night, from day the catheter was removed. I was incontinent for 7 months during the day, before regaining control. My CNS said this recovery was average.

 

User
Posted 19 Apr 2024 at 12:02

Keith, continence outcomes after surgery are quite variable. Most men get to around 99% continent, some don't and some are lucky enough to recover full continence. As Adrian has pointed out, the time taken to get there is also quite variable. It took me around 7 months to get to around 99%. I wear a drip shield during the day to catch the odd dribble, although for long distance walking I need to be well padded up. Chris 

User
Posted 19 Apr 2024 at 14:08

Hi Keith

 

Please see my thread below for details of my journey so far

Confused by diagnosis - Being diagnosed with prostate cancer - Prostate Cancer UK Online Community

It was not a straightforward decision, and 6 months after commencing AS I am now going to be coming back off it (either voluntarily or otherwise, depending on my next results) in the summer.

If nothing else, it has bought me 6 more months without any of the side effects of treatment, so I don't really regret going for it. I would just advise you to be very much on the ball with chasing repeat tests/results. Make sure you have all of the information you can possibly get your hands on. If I had not insisted on seeing a copy of my histology report, I would not know they found Crib/PNI in a couple of my cores. If I had not insisted on speaking to my consultant about my last set of results, I would not know that two separate pathologists had scored me higher than the third (whose results prompted me to go for AS originally).

Good luck with your treatment whatever you choose mate, and keep us all posted.

Ian.

User
Posted 19 Apr 2024 at 16:43

Adrian,

sorry for my error. Thanks for the incontinence information.

Best wishes,

Keith

User
Posted 21 May 2024 at 16:13

Everyone,

Thanks for your help. I have now seen a surgeon and an oncologist and Ive decided to go for Active Surveillance.

The oncologist advised against radiotherapy. She said the risk of side effects was not worth it with my cancer at the level it is. Incidentally, she said I had very long seminal vesicles. 

Given that I have a small prostate it would seem I'm physically a bit bizarre (my observation not hers).

The surgeon was less forthright than the oncologist. He answered all my questions but left the choice to me. He assured me I can come off AS if I wished after starting it.

I have an appointment with the Surgeon who did the Itind procedure on 6th June.

The Oncologist booked a blood test for me. My PSA is 4.9, down from 7.9.

Once again thanks to everyone for your thoughts opinions and advice. Good luck to you all.

Keith 

User
Posted 21 May 2024 at 16:33

Adrian,

I definitely will, whether it's good or bad news. I think it would be helpful if those people, who have been on the forum following a scary diagnosis, post positive outcomes if they've had such outcomes.

Best wishes,

Keith 

User
Posted 03 Jun 2024 at 16:30

Best Wishes.

Keep us posted.

Keith 

Show Most Thanked Posts
User
Posted 18 Apr 2024 at 22:18

Hi Keith.

My view is, why fix something that isn't broken?

AS is being used more often

https://www.cancer.gov/news-events/cancer-currents-blog/2022/prostate-cancer-active-surveillance-increasing

You appear to have low grade, low volume prostate cancer. If it's well contained within the prostate, I would have AS

My only caveats would be, ensure that you have follow up PSA tests, MRI scans and if necessary follow up biopsies.

I believe that only about 30% of men who chose AS, have disease progression and  later need radical treatment. They seem good odds to me. Unfortunately I was in the 30% who's AS failed, and I ended up having surgery but that doesn't alter my opinion.

I must also advise you that AS needs you to have the mindset to cope with knowing that you have the disease,  but being content that you are safely being monitored.

Have you been prescribed anything for your nocturia?

Best of luck mate and nice to meet you.

 

 

 

Edited by member 18 Apr 2024 at 22:42  | Reason: Additional text

User
Posted 18 Apr 2024 at 22:32

Adrian56

Thanks for your reply.

I have tried Solifenicin, Tamsulosin and Finisteride for my nocturia. No joy with either so I was sent for a cystoscopy in Feb 2023 and agreed to take part in a trial comparing a procedure called Urology against Itind. I was randomised into the Itind strand.

Regards

Keith

User
Posted 18 Apr 2024 at 22:38

I was prescribed Tamulosin for about 7 years prior to diagnosis. It seemed to help with nocturia.

User
Posted 19 Apr 2024 at 10:02

Hi, I was had similar numbers to you  at the age of 70 Gleason 3+4=7 t2 no mo and 5 cores out of 20 positive .

I was offered robotic surgery or Brachytherapy  but no AS and went for Brachytherapy.

All good so far coming up to 8 years in September.

My only comment on AS is you need to talk to members here that have taken the AS route and left it to long and have poorer results later on and maybe leaving further treatment to late.

Good luck John.

User
Posted 19 Apr 2024 at 10:53

Originally Posted by: Online Community Member
My only comment on AS is you need to talk to members here that have taken the AS route and left it to long and have poorer results later on and maybe leaving further treatment to late.

Hi John, 

I'm in that group. I was diagnosed, in Dec 2020, middle of Covid restrictions,  PSA 5.6, Gleason 6 (3+3),  only 2 out of 16 cores positive, T2a with reasonable safety margins. AS was offered and based on that information I thought it was a no brainer to give it a go.

My 3 monthly PSA tests all remained relatively stable. 18 months on, they gave me a follow up MRI, which showed bilateral disease, tumour in both lobes, significant progression. Biopsy showed T3a disease Gleason 8 (4+4) in 20 out of 24 cores, PSA still only 7. I had a prostatectomy which confirmed the staging with EPE, Gleason 9 (4+5)

It transpired that I was given the the wrong initial cancer staging, although it was low grade and low volume, it was T2c disease from the outset. On top of that, unbeknown to me, the original consultant had recommended  a 6 month follow up MRI, which was overlooked.

These errors, plus the likelihood, that the first biopsy had unfortunately missed the more aggressive cells, had left me in quite a precarious position. 

Having said all that, based on the information I was initially given, I still think I made the right decision to go on AS. 

What didn't help my cause was being given a incorrect intial cancer staging, and due to an error,  a 14 month delay in getting a follow up MRI scan.

This is why I strongly advise people to keep copies of their test results and consultations.

During AS, correct and timely monitoring of the disease is essential to keep patients safe.

 

Edited by member 19 Apr 2024 at 11:08  | Reason: Typo and additional text

User
Posted 19 Apr 2024 at 11:05

Originally Posted by: Online Community Member

Hi, I was had similar numbers to you  at the age of 70 Gleason 3+4=7 t2 no mo and 5 cores out of 20 positive .

I was offered robotic surgery or Brachytherapy  but no AS and went for Brachytherapy.

All good so far coming up to 8 years in September.

My only comment on AS is you need to talk to members here that have taken the AS route and left it to long and have poorer results later on and maybe leaving further treatment to late.

Good luck John.

Many thanks John,

I'm hoping to receive more replies from people who took the AS route. At the moment I'm wary of AS but very fearful of the side effects, particularly long-term incontinence, that might result from other options.

Interesting to hear of your positive experience of brachytherapy.

My best wishes to you.

Keith

User
Posted 19 Apr 2024 at 11:08

Hi Keith, I had BPH and none of the medications helped so I opted for a TURP and that had me peeing like a schoolboy again and sleeping through the night. However, the post TURP pathology showed some Gleason 3+3 and a later biopsy confirmed that but  in just 2 cores. My urologist was fairly confident that my condition would not progress but sensibly put me on AS. Two years later, my PSA was reading 3.9 (take into account that I had a much reduced prostate from the TURP). I then had an MRI (pirads5) and a targeted transperineal biopsy that showed Gleason 3+4 in 15 of 20 cores taken and I was categorised as T2b. I opted for RARP with Neurosafe and the post op pathology upgraded me to T3a with, thankfully, clear margins. That said, my last three PSA readings have increased, albeit still at a low level but nevertheless concerning. In your case, AS may be a reasonable first choice but you must be sure - and insistent if necessary - that at the very least you have quarterly PSA checks and an annual MRI.

Good luck, Peter

User
Posted 19 Apr 2024 at 11:13

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
My only comment on AS is you need to talk to members here that have taken the AS route and left it to long and have poorer results later on and maybe leaving further treatment to late.

Hi John, 

I'm in that group. I was diagnosed, in Dec 2020, middle of Covid restrictions,  PSA 5.6, Gleason 6 (3+3),  only 2 out of 16 cores positive, T2a with reasonable safety margins.

My 3 monthly PSA tests all remained relatively stable. 18 months on, they gave me a follow up MRI, which showed bilateral disease, tumour in both lobes, significant progression. Biopsy showed T3a disease Gleason 8 (4+4) in 20 out of 24 cores, PSA still only 7. I had a prostatectomy which confirmed the staging with EPE, Gleason 9 (4+5)

It transpired that I was given the the wrong initial cancer staging, although it was low grade and low volume, it was T2c disease from the outset. On top of that, unbeknown to me, the original consultant had recommended  a 6 month follow up MRI, which was overlooked.

These errors, plus the likelihood, that the first biopsy had unfortunately missed the more aggressive cells, had left me in quite a precarious position. 

Having said all that, based on the information I was initially given, I still think I made the right decision to go on AS. 

What didn't help my cause was being given a incorrect intial cancer staging, and due to an error,  a 14 month delay in getting a follow up MRI scan.

This is why I strongly advise people to keep copies of their test results and consultations.

During AS, correct and timely monitoring of the disease is essential to keep patients safe.

 

 

Adrian,

you say you've virtually had no incontinence (after your prostatectomy). Do you believe that was good luck or did you take some steps to achieve this?

Incontinence is a big fear for me.  I've already been to see a pelvic floor physiotherapist and I'm currently doing regular daily exercises. My logic is that if I do choose AS these will still be useful.

Thanks and best wishes,

Keith

User
Posted 19 Apr 2024 at 11:27

Hi Keith,

As far as I'm aware I've never said I recovered from incontinence quickly..

My surgeon told me he was particularly pleased with how the uretha reconnection had gone during the op.

However, although I was completely dry through the night, from day the catheter was removed. I was incontinent for 7 months during the day, before regaining control. My CNS said this recovery was average.

 

User
Posted 19 Apr 2024 at 12:02

Keith, continence outcomes after surgery are quite variable. Most men get to around 99% continent, some don't and some are lucky enough to recover full continence. As Adrian has pointed out, the time taken to get there is also quite variable. It took me around 7 months to get to around 99%. I wear a drip shield during the day to catch the odd dribble, although for long distance walking I need to be well padded up. Chris 

User
Posted 19 Apr 2024 at 14:08

Hi Keith

 

Please see my thread below for details of my journey so far

Confused by diagnosis - Being diagnosed with prostate cancer - Prostate Cancer UK Online Community

It was not a straightforward decision, and 6 months after commencing AS I am now going to be coming back off it (either voluntarily or otherwise, depending on my next results) in the summer.

If nothing else, it has bought me 6 more months without any of the side effects of treatment, so I don't really regret going for it. I would just advise you to be very much on the ball with chasing repeat tests/results. Make sure you have all of the information you can possibly get your hands on. If I had not insisted on seeing a copy of my histology report, I would not know they found Crib/PNI in a couple of my cores. If I had not insisted on speaking to my consultant about my last set of results, I would not know that two separate pathologists had scored me higher than the third (whose results prompted me to go for AS originally).

Good luck with your treatment whatever you choose mate, and keep us all posted.

Ian.

User
Posted 19 Apr 2024 at 16:43

Adrian,

sorry for my error. Thanks for the incontinence information.

Best wishes,

Keith

User
Posted 19 Apr 2024 at 16:50

Originally Posted by: Online Community Member

Hi Keith, I had BPH and none of the medications helped so I opted for a TURP and that had me peeing like a schoolboy again and sleeping through the night. However, the post TURP pathology showed some Gleason 3+3 and a later biopsy confirmed that but  in just 2 cores. My urologist was fairly confident that my condition would not progress but sensibly put me on AS. Two years later, my PSA was reading 3.9 (take into account that I had a much reduced prostate from the TURP). I then had an MRI (pirads5) and a targeted transperineal biopsy that showed Gleason 3+4 in 15 of 20 cores taken and I was categorised as T2b. I opted for RARP with Neurosafe and the post op pathology upgraded me to T3a with, thankfully, clear margins. That said, my last three PSA readings have increased, albeit still at a low level but nevertheless concerning. In your case, AS may be a reasonable first choice but you must be sure - and insistent if necessary - that at the very least you have quarterly PSA checks and an annual MRI.

Good luck, Peter

Peter,

thank you for your info. I'll ask the consultant what his definition of active surveillance is when I see him.

My best wishes to you, hope the PSA readings plateau.

Regards,

Keith

User
Posted 19 Apr 2024 at 16:52

Originally Posted by: Online Community Member
sorry for my error. Thanks for the incontinence information.

No probs mateπŸ‘

User
Posted 19 Apr 2024 at 16:53

Originally Posted by: Online Community Member

Hi Keith

 

Please see my thread below for details of my journey so far

Confused by diagnosis - Being diagnosed with prostate cancer - Prostate Cancer UK Online Community

It was not a straightforward decision, and 6 months after commencing AS I am now going to be coming back off it (either voluntarily or otherwise, depending on my next results) in the summer.

If nothing else, it has bought me 6 more months without any of the side effects of treatment, so I don't really regret going for it. I would just advise you to be very much on the ball with chasing repeat tests/results. Make sure you have all of the information you can possibly get your hands on. If I had not insisted on seeing a copy of my histology report, I would not know they found Crib/PNI in a couple of my cores. If I had not insisted on speaking to my consultant about my last set of results, I would not know that two separate pathologists had scored me higher than the third (whose results prompted me to go for AS originally).

Good luck with your treatment whatever you choose mate, and keep us all posted.

Ian.

Ian,

thanks for the advice. I'll be sure to post an update after I have seen pathologist on 16/05/24.

Best wishes,

Keith

User
Posted 19 Apr 2024 at 20:51

Hi. I am currently on Active Surveillance following my biopsy results in January. I was Gleason 3+4, T2 CPG2, had 4 positive cores from 28 & only 10% was grade 4.

i was offered all options but as mine was localised, contained & slow growth I chose AS as why have something radical doing now if it’s not necessary and might not ever cause a problem or not for many years! 
there’s quite a lot of guys at my local monthly prostate cancer support group that have been on AS for 8/10 years or more.

im have three monthly PSa blood tests & follow up consultation in July followed by another MRI December. If you have the mindset to go on AS then do it, I’m just getting on with daily life and not worrying about being on AS, life’s to short as it is to stress about it, positive mind helps immensely dealing with it.

good luck with whatever you do and I’d suggest speaking to the specialist nurses on the prostate cancer UK site, they are amazing & will give you great advice.πŸ™‚

User
Posted 19 Apr 2024 at 22:44

In short: I was 3 years on AS.

Starting initially with PSA 5 at 62 years old

A year later increased to 6.5. 

           DRE and Biopsy was negative. Diagnosed infection and prescribed antibiotic that brought down PSA to 5.0

A year later PSA rose again to 7.6. ُ

           DRE & MRI negative. Assuming it was infection, Prescribed antibiotic again that brought down PSA to 6.3

16 months later, PSA 11,

           T3a, biopsy negative. Biopsy again that showed 3+4.

Had robotic radical prostatectomy 2 years ago 

            pathology results T2c, G7=3+4

 

My early tests did not show much to worry about so I stayed on AS. But I always wonder if:

  1. My one of my early tests were more accurate (positive) would I have chosen AS or not?

  2. Whether my AS resulted to progression of cancer?

I am also stunned with so many false tests results:

4 negative DRE by 4 different urologist?

Two negative biopsies.

One negative MRI - T3a that (fortunately) turned out to be T2c post-surgery pathology,

The only true test result was 3rd biopsy that turned to be the same after surgery (G7).

 

My 1st advice is, make sure your test results are as accurate as possible before deciding what to do. Even if needed go private and ask for 24 core rather than normal 12 cores. Do your MRI with much advance machines rather than old, outdated ones.

2nd advice especially if you are over 70 to get ride of it sooner than later. The chances that you could have surgery get thinner as you get older.

Best Luck

Fred

 

 

User
Posted 26 Apr 2024 at 16:35

I've received a copy of my histology report and put it on my profile. The report divides the 16 cores taken into 5 specimens. I assume 16 cores rather than more were taken because my prostate is small (21cc following Itind procedure for BPH in November 2023.)  Before Itind it was 33cc. The target area from my MRI was not positive. It has a suspicious lesion.

Three of the specimens are reported as containing "atypical glands that are of concern but insufficient for a definitive diagnosis of invasive adenocarcinoma. Active inflammation is present." I find this comment less than reassuring. Has anybody out there also had this on their histology report? What does "active" inflammation mean?

Thanks in advance for any help.

 

User
Posted 21 May 2024 at 16:13

Everyone,

Thanks for your help. I have now seen a surgeon and an oncologist and Ive decided to go for Active Surveillance.

The oncologist advised against radiotherapy. She said the risk of side effects was not worth it with my cancer at the level it is. Incidentally, she said I had very long seminal vesicles. 

Given that I have a small prostate it would seem I'm physically a bit bizarre (my observation not hers).

The surgeon was less forthright than the oncologist. He answered all my questions but left the choice to me. He assured me I can come off AS if I wished after starting it.

I have an appointment with the Surgeon who did the Itind procedure on 6th June.

The Oncologist booked a blood test for me. My PSA is 4.9, down from 7.9.

Once again thanks to everyone for your thoughts opinions and advice. Good luck to you all.

Keith 

User
Posted 21 May 2024 at 16:22

Good luck Keith. If you don't mind, keep popping in and giving us an update.

User
Posted 21 May 2024 at 16:33

Adrian,

I definitely will, whether it's good or bad news. I think it would be helpful if those people, who have been on the forum following a scary diagnosis, post positive outcomes if they've had such outcomes.

Best wishes,

Keith 

User
Posted 03 Jun 2024 at 16:17

Just got my 28 core biopsy feedback today. Big C in 5 cores, worst case 6mm (45%) in one of the cores. Gleason 3+3. Had sort of convinced myself I had Prostatitis, as had a few symptoms and have taken Tamulosin for about 7 years (I'm 64), for nocturia. PSA has gone from 5.2 to 5.45 in about a month. MRI showed x1 PIRADS 4 and x1 PIRADS 3. Turns out the PIRADS 4 is the problem area. Wasn't offered a copy of my Histology Report today, but will follow up. I'd already decided to go (initially at least) AS route. Next PSA test in 3 months, also further discussions with Surgeon and Radiographer to come. Specialist Nurse who gave me today's news suggested that Brachytherapy a non-starter as Gland is 66cc?? A bit dismissive when I raised subject of Hormone Therapy to reduce Gland size and said, would only be done if Urinary Issues got worse??. This is something else for me to research/get another view on I think. Also told AS is regular PSA, and furthe Biopsies in circa 18 months, if PSA dictates. I was told further MRIs weren't their policy?? Again, I need to follow this up, as it's contradictory to what I've read elsewhere. Touchwood, I'm reasonably healthy and hoping to ride the storm till focal therapies such as HIFU etc become more common place. Finally, for now, good luck to all our readers, wherever you are on the journey.

User
Posted 03 Jun 2024 at 16:30

Best Wishes.

Keep us posted.

Keith 

User
Posted 09 Nov 2024 at 14:42

I am recently diagnosed with prostate cancer and am going to be on AS somebody at Prostate Cancer UK said there was a page on here where you could be part of a online zoom cll specifically for people on AS does nyone know where I can find it ?

User
Posted 09 Nov 2024 at 17:28

I'm on AS. I'm not aware of such a group but if there is one I'd like to join it.

Best wishes,

Keith

User
Posted 09 Nov 2024 at 17:58

Originally Posted by: Online Community Member

I am recently diagnosed with prostate cancer and am going to be on AS somebody at Prostate Cancer UK said there was a page on here where you could be part of a online zoom cll specifically for people on AS does nyone know where I can find it ?

https://prostatecanceruk.org/form-pages/active-surveillance-group

I have been on here for years and never seen this before. I assume it is still active.

Thanks Chris 

 

User
Posted 13 Nov 2024 at 16:45

Thank you that still works

 
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