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Just diagnosed with prostate cancer

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User
Posted 03 Aug 2022 at 11:33

I was diagnosed on 27/7/2022

My consultant told me, I have low risk prostrate cancer.

Gleeson 3+3  6 found.

PSA destiny 0.08

Not sure what options to take next.

Thanks for letting join.

Dave.

 

 

 

 

 

 

 

 

User
Posted 05 Aug 2022 at 13:18

Some consultants don't even consider Gleason 3+3 to be sufficiently different to normal cells to be cancer.  However, PCa is so unpredictable it is worth monitoring it.  It is also helpful to know where the tumours are. There are occasionally cases where some 4 cells have not been found in biopsy or may progress to a higher Gleason grade .  Each patient should be considered on the way he presents as an individual.  As was mentioned by another member, it's a good idea to download or obtain a hard copy of the Tool Kit.  https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100 

Barry
User
Posted 03 Aug 2022 at 20:16

Hi Davey,

Sorry you find yourself here.

Good that it seems to have been found early and is low grade though. Have they given you any options?? Maybe they have mentioned active surveillance where you wouldn’t have to have any immediate treatment.

 

User
Posted 03 Aug 2022 at 22:38

The prostate cancer toolkit might help you through this minefield. It's free but I am sure prostate cancer UK would be more than happy with a donation.

https://shop.prostatecanceruk.org/tool-kit

As everyone else has said you are low risk hence have options. 

 

User
Posted 03 Aug 2022 at 23:31

Well you are low risk and this cancer may never progress, so I would start with active surveillance. Write down your PSA and the date of the test, DO NOT accept anyone saying your PSA is NORMAL, you need the number because you need to see if it is rising or falling and how fast it is rising or falling. 

Every PSA test is giving you extra information on how severe your disease is. If you have a test every six months this time next year you will have three data points in another year you will have five. So by then you will have quite a good idea how severe your cancer is. Of course you or the onco might say, this is starting to look troublesome within a few months, in which case choose a treatment.

If you're lucky you will find your PSA rises so slowly you will get to enjoy a another decade or more of good sex and continence.

Dave

User
Posted 05 Aug 2022 at 04:28

Hi Dave,

Welcome to the club, They seem to have picked it up early and that gives you more time and choices to decide on the options.You didn't give your age as it does make a difference to what the Specialists may advise you on.

I was 70 when i was diagnosed and it was picked up by a private medical.

If you click on my Avatar you can see my journey that is nearly 6 years since treatment.My  PSA was 2.19 and Gleason 3+4 =7 with 5 samples out of 20 positive.I was offered the choice of Robotic removal or Brachytherapy.

I decided to go for Brachytherapy as i felt it was less invasive,Try to read up about all your options as you have plenty of time to choose.

Regards John.

 

User
Posted 05 Aug 2022 at 11:51

Dave, I was in a similar situation, similar age to yourself. My PSA was 20, with a Gleeson Score of 3+4. I was offered RP to remove it in February, however because I knew it was slow growing, I knew I did not have to rush into it. Particularly as I knew the side effects and effects on quality of life. I explored the HIFU option, even went for another Biopsy, but my pca was multifocal, I had a combination of Gleeson 3+4 and 3+3, so what would have happened was I HIFU would have been used on the right side and they would have left the 3+3 on AS. I thought long and hard and decided to go with the RP. Probably the best thing in my case, as my prostate size was the largest they have seen! 

I would advice you to consider all your options and not rush into any of the invasive treatment options, that is what I did and even though I am going through the effects of the surgery (10weeks on) with ED and mild incontinence, I think I am fairly comfortable with my decision. I remember getting the call after my biopsy with the Nurse telling me I had PCa, I remember begging her to put me on AS, she declined saying Gleeson Score 3+3 was the maximum!

User
Posted 05 Aug 2022 at 15:17

Originally Posted by: Online Community Member

what is HFIU ? 

High-intensity focused ultrasound (HIFU) uses high-frequency ultrasound energy to heat and destroy cancer cells in the prostate. A beam of ultrasound energy travels into the prostate from a probe put into the back passage (rectum).

https://prostatecanceruk.org/prostate-information/treatments/hifu

 

User
Posted 15 Sep 2022 at 07:57

Originally Posted by: Online Community Member

I done plenty of ejaculation, is that a bad thing, and I do alot of walking, I travel about good job I have a train pass and go places.



They say not to within 48 hours of your PSA test as it can cause a temporary rise. Not long until you see your GP so he may recommend you repeat the test. Hopefully that will be partly responsible for the rise. 

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User
Posted 03 Aug 2022 at 20:16

Hi Davey,

Sorry you find yourself here.

Good that it seems to have been found early and is low grade though. Have they given you any options?? Maybe they have mentioned active surveillance where you wouldn’t have to have any immediate treatment.

 

User
Posted 03 Aug 2022 at 20:49
Yes very low , active surveillance may be offered , my mate was on it but eventually had to have it out then 33 sessions of rt . He’s fine now . Being 57 , will be taken into account . Can you confirm your psa ?
User
Posted 03 Aug 2022 at 20:52

Thank you for your reply Elaine.

 

They gave me these options

 

Active surveillance .

 

Prostate Brachytherapy.

Radiotherapy.

Robotic assisted laparoscopic radical prostatectomy.

 

I've been anxious, the booklet they gave me with Numbers to contact the nurses in the team.

 

 

User
Posted 03 Aug 2022 at 21:13
So all the options ! I would take active surveillance enjoy life and have regular psa , every 3/4 months . BUT you got to decide I personally had ht /rt 20 fractions . I took the lead off my mate but I knew a lot of guys who had it , so so common
User
Posted 03 Aug 2022 at 22:38

The prostate cancer toolkit might help you through this minefield. It's free but I am sure prostate cancer UK would be more than happy with a donation.

https://shop.prostatecanceruk.org/tool-kit

As everyone else has said you are low risk hence have options. 

 

User
Posted 03 Aug 2022 at 23:31

Well you are low risk and this cancer may never progress, so I would start with active surveillance. Write down your PSA and the date of the test, DO NOT accept anyone saying your PSA is NORMAL, you need the number because you need to see if it is rising or falling and how fast it is rising or falling. 

Every PSA test is giving you extra information on how severe your disease is. If you have a test every six months this time next year you will have three data points in another year you will have five. So by then you will have quite a good idea how severe your cancer is. Of course you or the onco might say, this is starting to look troublesome within a few months, in which case choose a treatment.

If you're lucky you will find your PSA rises so slowly you will get to enjoy a another decade or more of good sex and continence.

Dave

User
Posted 05 Aug 2022 at 04:28

Hi Dave,

Welcome to the club, They seem to have picked it up early and that gives you more time and choices to decide on the options.You didn't give your age as it does make a difference to what the Specialists may advise you on.

I was 70 when i was diagnosed and it was picked up by a private medical.

If you click on my Avatar you can see my journey that is nearly 6 years since treatment.My  PSA was 2.19 and Gleason 3+4 =7 with 5 samples out of 20 positive.I was offered the choice of Robotic removal or Brachytherapy.

I decided to go for Brachytherapy as i felt it was less invasive,Try to read up about all your options as you have plenty of time to choose.

Regards John.

 

User
Posted 05 Aug 2022 at 11:32

Thank you but I have until 10 August to decide, not sure if you got my last message.

I'm 57 PSA 3.3.  gleeson  6

They've had a meeting about me, and now the next step on 10 August.

I want to do the best because, don't want it coming back in years.

Edited by member 05 Aug 2022 at 11:36  | Reason: Spelling

User
Posted 05 Aug 2022 at 11:51

Dave, I was in a similar situation, similar age to yourself. My PSA was 20, with a Gleeson Score of 3+4. I was offered RP to remove it in February, however because I knew it was slow growing, I knew I did not have to rush into it. Particularly as I knew the side effects and effects on quality of life. I explored the HIFU option, even went for another Biopsy, but my pca was multifocal, I had a combination of Gleeson 3+4 and 3+3, so what would have happened was I HIFU would have been used on the right side and they would have left the 3+3 on AS. I thought long and hard and decided to go with the RP. Probably the best thing in my case, as my prostate size was the largest they have seen! 

I would advice you to consider all your options and not rush into any of the invasive treatment options, that is what I did and even though I am going through the effects of the surgery (10weeks on) with ED and mild incontinence, I think I am fairly comfortable with my decision. I remember getting the call after my biopsy with the Nurse telling me I had PCa, I remember begging her to put me on AS, she declined saying Gleeson Score 3+3 was the maximum!

User
Posted 05 Aug 2022 at 13:18

Some consultants don't even consider Gleason 3+3 to be sufficiently different to normal cells to be cancer.  However, PCa is so unpredictable it is worth monitoring it.  It is also helpful to know where the tumours are. There are occasionally cases where some 4 cells have not been found in biopsy or may progress to a higher Gleason grade .  Each patient should be considered on the way he presents as an individual.  As was mentioned by another member, it's a good idea to download or obtain a hard copy of the Tool Kit.  https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100 

Barry
User
Posted 05 Aug 2022 at 15:09

what is HFIU ? 

User
Posted 05 Aug 2022 at 15:17

Originally Posted by: Online Community Member

what is HFIU ? 

High-intensity focused ultrasound (HIFU) uses high-frequency ultrasound energy to heat and destroy cancer cells in the prostate. A beam of ultrasound energy travels into the prostate from a probe put into the back passage (rectum).

https://prostatecanceruk.org/prostate-information/treatments/hifu

 

User
Posted 06 Aug 2022 at 01:07
HIFU is one of several types of focal therapy. The next most administered in the UK is Cryotherapy. To check whether you are suitable for one of these treatments you need to consult a focal therapy specialist. Be aware that there are risks with any medical intervention but with HIFU the risks are generally less than with surgery and side effects less than with this and with radiation. However, sometimes more radical treatment than HIFU becomes necessary even if HIFU is repeated but, cannot do the job effectively.

Don't be pressurised into making an early decision

Barry
User
Posted 06 Aug 2022 at 12:25

Davey , sorry to find yourself here.

Have you seen your consultant / oncoligist , they go through all the options face to face and i found them to be very factual and to the point . only you can make that choice as hard as it is. 

prior to my appointment i thought i had my head  around it , and was going to choose HT/RT , unfortunately after ultrasound that option was no longer viable they told me . I am having RARP early september . 

whatever option you choose please just make sure it is what you want ( although none of us want ) 

wishing you well along your journey . 

colinb

Edited by member 06 Aug 2022 at 12:26  | Reason: Not specified

User
Posted 06 Aug 2022 at 12:29

PSA is 3.3  Thank you.

User
Posted 06 Aug 2022 at 12:31

Thank you, I've thought about Brachytherapy, less time going to hospital.

 

User
Posted 06 Aug 2022 at 12:49

I've thought about Brachytherapy, not sure if they will do anything yet, in September I have a ecolosopy , because I gave a poo sample and they found blood, can't see blood, they seen it through microscope.

 

User
Posted 11 Aug 2022 at 10:26

Update

 

Saw the specialist yesterday 10 August and told with it being low, I was put on 

active surveillance.

I mentioned radio therapy but he said it would cause probs. 

Thanks for the messages.

 

User
Posted 11 Aug 2022 at 11:12

That is a good idea. You don't want to be having side effects for nothing. Find out how often they will monitor your PSA, how often you will have an MRI scan? My local hospital has failed to book me in for appointments several times, so you need to keep a track of your surveillance.

Dave

User
Posted 14 Sep 2022 at 16:07

update 14 Sept 

I had psa blood test now it's 5.0

noticed weight loss.

13 stone in Feb

12 half  July

sept 6 under 12.

User
Posted 14 Sep 2022 at 16:18

Originally Posted by: Online Community Member

update 14 Sept 

I had psa blood test now it's 5.0

noticed weight loss.

13 stone in Feb

12 half  July

sept 6 under 12.

 

Don’t forget you’ve been through a lot and stress itself will cause some weight loss. Both my husband and I lost nearly 2 stone each….part in change of diet but stress was definitely a factor.

I would make sure they keep a close eye on your PSA though. Had you done any of the things that can raise PSA before the test eg. exercise/cycling/ejaculation?? Have you managed to speak to your consultant since your latest PSA?? 

User
Posted 15 Sep 2022 at 02:45

I done plenty of ejaculation, is that a bad thing, and I do alot of walking, I travel about good job I have a train pass and go places.

I see my consultant in December, but on 20 Sept see my GP for a review.

when I'm out travelling I don't gey stressed as much.

 

User
Posted 15 Sep 2022 at 07:57

Originally Posted by: Online Community Member

I done plenty of ejaculation, is that a bad thing, and I do alot of walking, I travel about good job I have a train pass and go places.



They say not to within 48 hours of your PSA test as it can cause a temporary rise. Not long until you see your GP so he may recommend you repeat the test. Hopefully that will be partly responsible for the rise. 

 
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