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Knowing what to expect?

User
Posted 18 Jun 2022 at 20:22

Hello and thank you for being here - I’m 59, have had my PSA checked every year since aged 50 but because of Covid missed three years - had PSA checked four weeks back and it was at 4.7 - (2019 it was 3.5) Dr sent me for MRI - got scan within 5 days, got results from Register four days later face to face and have Gleason 4+4 - PSA density 7.4 and DRE showed large (40cc) but smooth and regular prostate - I had no symptoms and have no other issues (fighting fit) the information I can find online about Gleason 4+4 is very worrying indeed (very worried) having biopsy in 7 days - hoping everything is self contained - not that I understand the dynamics but I wondering if given my relatively low PSA and a smooth regular prostate that I’ve acted as early as possible - worried about how aggressive it is - I’m thinking the absolute worst it could be - thanks Gary

User
Posted 19 Jun 2022 at 01:45
I think you have misunderstood - if you haven't had your biopsy yet, they cannot possibly know that you have a Gleason 4+4.

Have you confused Gleason grade with PI-RADS? A PI-RADS 4 means that the scans have indicated that there is a good chance of cancer being found at biopsy although it isn't certain.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 19 Jun 2022 at 08:06

Gary, are you getting your terminologies mixed up ? Do you mean you are having scans in 7 days, to see if the cancer has spread.


Thanks Chris 

User
Posted 19 Jun 2022 at 09:11

Thanks for the quick response Lyn - glass half empty kind of guy - understand I need solid conformation - I could have had the biopsy next Tue but can’t as need to pick mum up from hospital after hip opp - so it is now on the 28th - now thinking I should have got someone else to pick her up  - is 7 days going to make much difference - not sure how fast this cancer grows and spreads - lots to learn - thanks for replying - Gary 

User
Posted 19 Jun 2022 at 09:17

Gary, as Chris and Lyn have pointed out, your description above is a bit confusing.


But, let's assume you do have G4+4.  


I was diagnosed at 46.  My gleason score was 4+5.  


To cut a long story short, almost 6 years later, I'm still here.  I've recently been discharged from oncology.  I have every reason to believe I'll be around for a long yet.


There are several of us on here who were Gleason 9 and we are still here.


I don't want to minimise your worries, and some men have of course lost their battle, but you have every reason to hope.  

User
Posted 19 Jun 2022 at 09:20

Hello Chris - thanks for responding- no this is all new - had MRI which they have said possible 4+4  - biopsy booked for 28th - anxiety is at 100% - of course I think the absolute worst - but puzzled since PSA is relatively low and have regular smooth prostate but enlarged - something is up for sure but not sure at what stage I am - just have to wait - it does help talking to people though - Rgds Gary 

User
Posted 19 Jun 2022 at 09:20

Good to see your clarification.  Your biopsy results are important.  Let's hope your gleason score is lower than you thought.


One week likely won't make a difference.  

User
Posted 19 Jun 2022 at 09:23

Gary, seven days is going to make absolutely no difference. Prostate cancer grows very slowly, so you could wait for a month for your biopsy and still make no difference, especially since your PSA is low. Now you are on the 'conveyor' of diagnosis and treatment, try not to stress too much. Things will happen when they need to happen. When I was first investigated, it was several weeks from first seeing my GP to having the diagnosis confirmed, via Digital Rectal Examination, MRI and a bone scan. Hormone therapy lasted 7 months before my radiotherapy started. The whole thing, start to finish, lasted 8 months. It would have been less - a matter of 7-8 weeks - if I had opted for prostatectomy. It's easy for me to say 'Don't panic', but that's my best advice. Just take things one step at a time. Best of luck,


Hermit

Edited by member 19 Jun 2022 at 09:24  | Reason: Not specified

User
Posted 19 Jun 2022 at 09:29

Thanks Ulsterman - have read your journey - encouraging - understanding we’re all different - thanks for replying - Gary

User
Posted 19 Jun 2022 at 09:38

Hermit Thank you for your support in responding - may I ask why you did not opt for a prostatectomy? Rgds Gary

User
Posted 19 Jun 2022 at 13:02
Okay so just to confirm, you don't have a G4+4 so no point distressing yourself by googling outcomes. I think what they have told you is that your mpMRI result was a 4 - there is a likelihood that cancer will be found by the biopsy. What score that biopsy might find is a complete unknown at this stage, and it is possible to get a PI-RADS 4 or even PI-RADS 5 and still get the all clear; the MRI is only predicting what might be found.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 19 Jun 2022 at 13:08

Hello Gary,
The surgeon offered me the option of robotic assisted prostatectomy within 3-4 weeks, and the oncologist offered me the choice of hormone therapy followed by radio therapy. I was given a couple of weeks to think about it. I opted for the hormone and radio therapy because I just did not like the idea of surgery and the certainty of incontinence (however temporary). I checked with Macmillan about the odds of incontinence and a nurse told me 'It is 100% certain, because of what happens during the operation'. H/t and r/t also have their inconveniences, but seemed a gentler way of achieving the same outcome, which was 'curative'. I also asked about watching and waiting, but was told 'You will just have to make the decision 6 months down the line, when the cancer will have had 6 months to spread - better to do it now'.
So, once you have the list of options open to you (which vary depending on how advanced the cancer is, and where it is, and if it has spread), you pay your money and you take your choice. Surgery or r/t & h/t - if both are offered, the outcomes will be more or less the same, so it's just down to which you fancy the least!

Edited by member 19 Jun 2022 at 18:06  | Reason: Not specified

User
Posted 19 Jun 2022 at 13:33

Thanks Lyn - interesting - the consultation was so quick comparatively that it was hard to bring everything together in the time given - thanks once again for the support - Gary

User
Posted 19 Jun 2022 at 16:03

Originally Posted by: Online Community Member


Thanks Lyn - interesting - the consultation was so quick comparatively that it was hard to bring everything together in the time given - thanks once again for the support - Gary



Yes see suggestion on this aspect to another member here in my last post today (19/06/22) https://community.prostatecanceruk.org/posts/t28267-Radiotherapy-following-chemo 

Edited by member 19 Jun 2022 at 16:17  | Reason: clarification

Barry
User
Posted 19 Jun 2022 at 17:49
Nobody can possibly tell you what your Gleason score is until you’ve had a biopsy. An MRI can see a potential tumour, but it’s only by examining cells under a microscope that it can be determined how aggressive the cancer is (which is what a Gleason score is).
User
Posted 19 Jun 2022 at 22:14

Evening Chris - in reading back through all the reply’s I get it now - what I was shown / told then by the consultant was the Likert Scale of 1-5 and was told my tumour was a 4 (likely I have prostate cancer) with 5 being (very likely ) OK - got it now - I thought the MRI could see the cells - being a bit thick here - it all been a bit of a shock - will get the biopsy done and see where I’m at - good or bad -  thanks for the support 

 
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