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Diagnosis yesterday and looking for thoughts/experience

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User
Posted 18 Jan 2024 at 15:57

Hello, I was diagnosed yesterday with PCa. The consultant said I am viable for all options of treatment - active surveillance, radiotherapy, brachytherapy (sorry spelling) and robotic surgery. I have a low grade cancer that is in left lobe only 7/14 cores had this in them all from the area that the MRI showed an abnormality.  He gave me some numbers verbally which I still have to get from a letter they are sending, but bottom line is that he said in over 90% of cases of my type if I do nothing I will likely be alive in 15 years! So it sounds like good news. He of course said that wasn't an option (doing nothing), so I have decided to go for the active surveillance which means 3 month PSA checks and if I change my mind at any point, or the PSE blood test results start to increase, I can have another MRI/Biopsy and op/radiotherapy. Does this sound sensible to those with experience? I want to avoid/postpone the side effects for as long as possible but of course have slight anxiety about it suddenly changing and spreading. Anyway thanks in advance, I feel weirdly relieved as I like most people had imagined worse!

Just learnt that I have T2N0, Gleason (3+3) 6, PSA <10, 0.13 density? CPG 1 and volume 50% of 8 left and 7 right cores taken. All 7 were in left, the only numbers he was slightly concerned about, but not enough to suggest Active Surveillance was not Ok for a few months/years.

Edited by member 18 Jan 2024 at 17:08  | Reason: typo

User
Posted 18 Jan 2024 at 18:19

Hi Bubo,

I was 63 years old when first diagnosed Gleason 6 (3+3) low volume, low grade, 2 out of 14 cores. I was advised to go on active surveillance. I was more than happy to take that option, on the grounds of why do anything, when nothing might need doing?

Unfortunately my disease, despite my PSA levels remaining relatively stable, in only 20 months, progressed significantly.  I later elected RARP.

I fully support your decision to go on AS. I was told by a consultant that only about 30% of those on AS will need radical treatment at a later stage. What I would strongly advise is don't solely rely on PSA checks, they're not infallible, and make sure you get follow up DREs or MRIs.

Best of luck mate.

Edited by member 18 Jan 2024 at 18:52  | Reason: Spelling.

User
Posted 19 Jan 2024 at 19:06

Evening Bubo

 

Being told you have prostate cancer is a bit of a shock and can make you feel vulnerable, but your scores are very low and suggest that you have caught the cancer in the early stages. It is worth noting that the majority of men over 60 have signs of prostate cancer and in the past they did not even know they had it because very few people got tested. I only got tested in 2018 because the likes of Michael Parkinson, Rod Stewart, Jools Holland, Stephen Fry, Ben Stiller, who had all been diagnosed and been treated for prostate cancer, were telling guys to get themselves tested.

 

As you know from my previous message, I was first tested in 2018 when my PSA score was 3.58 and it could be argued that I was on AS until I was again tested in 2021. I did agree to go on AS for around 5 months in April 2021 when my  PSA score was 5.76 but came off AS when my PSA reached 6.01 in September of that year. To answer your specific question, if I knew in April 2021 what I know now (2024) I would have wanted treatment then rather than start the treatment ball rolling in September 2021. Did it make any difference waiting another 8 months until surgery? I don't know, but, and it is a big but, it may have meant that if I had had surgery ealier the cancer may not have been bulging out of the prostate resulting in my staging being upgraded from T2A to T3A

 

Ivan

User
Posted 18 Jan 2024 at 16:28

Generally PCa Tumours grow slowly so you should be able to be just monitored for a few months with low risk. This will give you time to learn more about the disease and help you become better informed when the time comes to opt for a radical treatment, Which could be a long time yet. I suggest you take the opportunity to read the 'Tool Kit' published by this charity which many have found to be very helpful. https://shop.prostatecanceruk.org/our-publications/all-publications/tool-kit?limit=100

 

Edited by member 18 Jan 2024 at 16:29  | Reason: to highlight link

Barry
User
Posted 19 Jan 2024 at 16:02

Afternoon Bubo

 

I initially had a PSA test in 2018 when I was 60 and the one I had via the NHS gave a reading of 3.58. The finger up the bottom by my doctor found that my prostate was slightly enlarged but was smooth, not lumpy. It was decided that because the reading was under 4 no action was necessary. Fast forward to March 2021, a further NHS PSA test found my reading had increased to 5.32 and one a month later to 5.76. I was then put on the cancer pathway and underwent a biopsy & number of  scans etc. Because the biopsy only found  cancer in a small number of cores and it was "only" graded Gleason 3+4=7 (With less than 5% grade 4) I decided to go on AS.  This changed in September 2021 when a further PSA test found my reading had increased to 6.01 and a further biopsy found that the cancer, though still Gleason 3+4=7, with still less than 5% grade 4, was now throughout my prostate in most of the extracted cores. After more scans etc, I decided to opt for the removal of my prostate and this happened just before Christmas 2021. The subsequent slice and dice of my prostate confirmed the original Gleason reading but increased the staging to T3a from T2a (because the cancer was found to be bulging out of the prostate).

 

If interested, more details can be found on my profile.

 

Ivan

 

 

User
Posted 19 Jan 2024 at 22:17

Hi Bubo

Im in a similar position to you, other than I was diagnosed last August. Originally they told me I was 3+4=7 and needed treatment. However they then decided it was 3+3=6 and I could choose AS if I wanted. I had the same doubts and misgivings which you are no doubt having, but decided it was worth putting off treatment and its side effects for a while if I could safely do so.

I had my first 3 month review in December and was told my PSA level had risen a bit (it is now 6.8) but I was ok to carry on.

If I’d opted to have surgery back then I’d probably be cancer free by now, but also suffering all of the well documented side effects of RARP. On balance I’m happy with my decision, and I know I can change my mind at any point if I want to, so it’s not closed off any options for treatment.

It can be a bit nerve wracking at times, but my advice is give it a go, even if you just give it a few months. By then you’ll have had chance to learn a lot more about PCa and decide what you want to do longer term.

Best of luck mate, and keep us posted.

Ian.

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User
Posted 18 Jan 2024 at 16:28

Generally PCa Tumours grow slowly so you should be able to be just monitored for a few months with low risk. This will give you time to learn more about the disease and help you become better informed when the time comes to opt for a radical treatment, Which could be a long time yet. I suggest you take the opportunity to read the 'Tool Kit' published by this charity which many have found to be very helpful. https://shop.prostatecanceruk.org/our-publications/all-publications/tool-kit?limit=100

 

Edited by member 18 Jan 2024 at 16:29  | Reason: to highlight link

Barry
User
Posted 18 Jan 2024 at 16:42
Hi Barry, thanks for this, I will take a look at the toolkit, Grateful for your response.
User
Posted 18 Jan 2024 at 18:19

Hi Bubo,

I was 63 years old when first diagnosed Gleason 6 (3+3) low volume, low grade, 2 out of 14 cores. I was advised to go on active surveillance. I was more than happy to take that option, on the grounds of why do anything, when nothing might need doing?

Unfortunately my disease, despite my PSA levels remaining relatively stable, in only 20 months, progressed significantly.  I later elected RARP.

I fully support your decision to go on AS. I was told by a consultant that only about 30% of those on AS will need radical treatment at a later stage. What I would strongly advise is don't solely rely on PSA checks, they're not infallible, and make sure you get follow up DREs or MRIs.

Best of luck mate.

Edited by member 18 Jan 2024 at 18:52  | Reason: Spelling.

User
Posted 18 Jan 2024 at 18:48

Hi Adrian

 

thsnk you so much for this reply, it’s very reassuring and sound advice. I’m getting 3 monthly PSA tests and if they change over the months, I’ll be MRId and DREd, even if no change they said I’ll get MRI etc at a year etc so sounds ok I think / hope you’re still doing ok 

thank you 

 

Originally Posted by: Online Community Member

Hi Bubo,

I was 63 years old when first diagnosed Gleason 6 (3+3) low volume, low grade, 2 out of 14 cores. I was advised to go on active surveillance. I was more than happy to take that option, on the grounds of why do anything, when nothing might need doing?

Unfortunately my disease, despite my PSA levels remaining relatively stable, in only 20 months, progressed significantly.  I later elected RARP.

I fully support your decision to go on AS. I was told by a consultant that only about 30% of those on AS will need radical treatment at a later stage. What I would strongly advise is don't solely rely on PSA checks, they're not infallible, and make sure you get follow up DREs or MRIs.

Best of luck mate.

User
Posted 19 Jan 2024 at 16:02

Afternoon Bubo

 

I initially had a PSA test in 2018 when I was 60 and the one I had via the NHS gave a reading of 3.58. The finger up the bottom by my doctor found that my prostate was slightly enlarged but was smooth, not lumpy. It was decided that because the reading was under 4 no action was necessary. Fast forward to March 2021, a further NHS PSA test found my reading had increased to 5.32 and one a month later to 5.76. I was then put on the cancer pathway and underwent a biopsy & number of  scans etc. Because the biopsy only found  cancer in a small number of cores and it was "only" graded Gleason 3+4=7 (With less than 5% grade 4) I decided to go on AS.  This changed in September 2021 when a further PSA test found my reading had increased to 6.01 and a further biopsy found that the cancer, though still Gleason 3+4=7, with still less than 5% grade 4, was now throughout my prostate in most of the extracted cores. After more scans etc, I decided to opt for the removal of my prostate and this happened just before Christmas 2021. The subsequent slice and dice of my prostate confirmed the original Gleason reading but increased the staging to T3a from T2a (because the cancer was found to be bulging out of the prostate).

 

If interested, more details can be found on my profile.

 

Ivan

 

 

User
Posted 19 Jan 2024 at 16:10
Thank you Ivan, I will definitely read your profile. I’m just on second day since my diagnosis and although I’ve opted for AS yesterday, on reading these experiences I am not thinking that’s my final decision- thanks to members on here I am

Building up a good picture from a broad range of people

User
Posted 19 Jan 2024 at 16:32

Hi Ivan, good idea, is that just by using reply here for instance? New to all this and on a phone so it’s not so easy to navigate. Thanks 

User
Posted 19 Jan 2024 at 16:45

Personally, and I think others do to, I find it easier to have just the one thread and post everything on it so that you have just the one record of your journey. It is easier for people wanting to access your journey too

 

Ivan

User
Posted 19 Jan 2024 at 17:41

Hello

 

are there any of you in the community who have chosen Active Surveillance and are happy with your decision and avoided treatment for a while please?

 

struggling a bit on day two after diagnosis

 

 

thanks

 

quote=Bubo;290759]

Quote:

Hello, I was diagnosed yesterday with PCa. The consultant said I am viable for all options of treatment - active surveillance, radiotherapy, brachytherapy (sorry spelling) and robotic surgery. I have a low grade cancer that is in left lobe only 7/14 cores had this in them all from the area that the MRI showed an abnormality.  He gave me some numbers verbally which I still have to get from a letter they are sending, but bottom line is that he said in over 90% of cases of my type if I do nothing I will likely be alive in 15 years! So it sounds like good news. He of course said that wasn't an option (doing nothing), so I have decided to go for the active surveillance which means 3 month PSA checks and if I change my mind at any point, or the PSE blood test results start to increase, I can have another MRI/Biopsy and op/radiotherapy. Does this sound sensible to those with experience? I want to avoid/postpone the side effects for as long as possible but of course have slight anxiety about it suddenly changing and spreading. Anyway thanks in advance, I feel weirdly relieved as I like most people had imagined worse!

Just learnt that I have T2N0, Gleason (3+3) 6, PSA <10, 0.13 density? CPG 1 and volume 50% of 8 left and 7 right cores taken. All 7 were in left, the only numbers he was slightly concerned about, but not enough to suggest Active Surveillance was not Ok for a few months/years.

User
Posted 19 Jan 2024 at 19:06

Evening Bubo

 

Being told you have prostate cancer is a bit of a shock and can make you feel vulnerable, but your scores are very low and suggest that you have caught the cancer in the early stages. It is worth noting that the majority of men over 60 have signs of prostate cancer and in the past they did not even know they had it because very few people got tested. I only got tested in 2018 because the likes of Michael Parkinson, Rod Stewart, Jools Holland, Stephen Fry, Ben Stiller, who had all been diagnosed and been treated for prostate cancer, were telling guys to get themselves tested.

 

As you know from my previous message, I was first tested in 2018 when my PSA score was 3.58 and it could be argued that I was on AS until I was again tested in 2021. I did agree to go on AS for around 5 months in April 2021 when my  PSA score was 5.76 but came off AS when my PSA reached 6.01 in September of that year. To answer your specific question, if I knew in April 2021 what I know now (2024) I would have wanted treatment then rather than start the treatment ball rolling in September 2021. Did it make any difference waiting another 8 months until surgery? I don't know, but, and it is a big but, it may have meant that if I had had surgery ealier the cancer may not have been bulging out of the prostate resulting in my staging being upgraded from T2A to T3A

 

Ivan

User
Posted 19 Jan 2024 at 19:21
Hi Ivan

Yes I can see why you would think that Ivan. A bit of me thinks I should consider treatment now rather than waiting but the other thought is of the side effects which I can avoid for at least a short while till I get my head round it! The 7.6 reading of PSA when calculated with some formula due to my 57ml prostate seemed to be ok according to my consultant so I have made what is maybe a temporary decision to have AS. I’ll see how I feel if my PSA is higher next Tuesday the first of my blood tests in AS life.

Thank you so much for replying

User
Posted 19 Jan 2024 at 22:17

Hi Bubo

Im in a similar position to you, other than I was diagnosed last August. Originally they told me I was 3+4=7 and needed treatment. However they then decided it was 3+3=6 and I could choose AS if I wanted. I had the same doubts and misgivings which you are no doubt having, but decided it was worth putting off treatment and its side effects for a while if I could safely do so.

I had my first 3 month review in December and was told my PSA level had risen a bit (it is now 6.8) but I was ok to carry on.

If I’d opted to have surgery back then I’d probably be cancer free by now, but also suffering all of the well documented side effects of RARP. On balance I’m happy with my decision, and I know I can change my mind at any point if I want to, so it’s not closed off any options for treatment.

It can be a bit nerve wracking at times, but my advice is give it a go, even if you just give it a few months. By then you’ll have had chance to learn a lot more about PCa and decide what you want to do longer term.

Best of luck mate, and keep us posted.

Ian.

User
Posted 20 Jan 2024 at 07:38
Hi Ian, thanks for your message, it’s good to

Know we are not in it alone. That’s reassuring, yes I’ll keep updating and will follow your progress too. My PSA was 7.6 and I’ve another blood test next Tuesday but even a few weeks without side effects is a bonus in my mind. They did a calculation with size of prostate and PSA and it gave a number of 0.13 which is under a 0.15 the consultant was ok with for AS. So I’m trying to find something to read on that.

Thanks again

Best of luck

Bubo

 
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