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42, Gleason score 6, and need advice

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User
Posted 02 May 2024 at 09:09

Hello everybody,

I've never had to write about anything like this, so here goes...

I'm 42, fit and otherwise healthy, but this year I underwent a biopsy because my prostate apparently feels unusual.

My PSA levels were fairly low, but one single sample of the biopsy returned some small positive. The report and my GP suggested a second biopsy, but the specialist this week said he would have an operation were he in my position.

All other scans have shown nothing has spread. I will have an MRI scan soon to determine if it can be more accurately located. I will also see another specialist for a second opinion.

Naturally, I'm quite scared. And as I no-longer live in the UK, I have to do all this in a second language and with additional translation help, which makes it more daunting.

I really don't know what treatment to pursue - active surveillance sounds attractive to me, and the side effects of an operation sound too risky. But I am told the operation is the best way forward. The specialist also suggested that the MRI could help specify the area, meaning a smaller operation that doesn't remove the prostate - I'm not sure what operation that would be?

I am getting married this year. I don't have any kids and never wanted any, and now suddenly I'm wondering that maybe I should do! I can't help but feel all the good times are behind me.

Sorry for the long post, I'm quite stressed. I'm sure I'm not the only one here though! Thanks in advance for any advice.

User
Posted 02 May 2024 at 09:09

Hello everybody,

I've never had to write about anything like this, so here goes...

I'm 42, fit and otherwise healthy, but this year I underwent a biopsy because my prostate apparently feels unusual.

My PSA levels were fairly low, but one single sample of the biopsy returned some small positive. The report and my GP suggested a second biopsy, but the specialist this week said he would have an operation were he in my position.

All other scans have shown nothing has spread. I will have an MRI scan soon to determine if it can be more accurately located. I will also see another specialist for a second opinion.

Naturally, I'm quite scared. And as I no-longer live in the UK, I have to do all this in a second language and with additional translation help, which makes it more daunting.

I really don't know what treatment to pursue - active surveillance sounds attractive to me, and the side effects of an operation sound too risky. But I am told the operation is the best way forward. The specialist also suggested that the MRI could help specify the area, meaning a smaller operation that doesn't remove the prostate - I'm not sure what operation that would be?

I am getting married this year. I don't have any kids and never wanted any, and now suddenly I'm wondering that maybe I should do! I can't help but feel all the good times are behind me.

Sorry for the long post, I'm quite stressed. I'm sure I'm not the only one here though! Thanks in advance for any advice.

User
Posted 02 May 2024 at 14:01

Hi Richard,

Thanks for your message. I am in the Czech Republic, where I believe the standard of healthcare is actually very good.

I had a separate, minor issue, where they stumbled upon the prostate issue largely by accident. I have no symptoms etc... But because it feels hard and lumpy, they took a PSA test, then later a biopsy, ultrasound and bone scan (all part of the procedure here - I don't know what it's like in the UK). All were clear. Apparently the PSA was only slightly high, but not necessarily concerning.

Gleason score 3+3, grade 1, non-aggressive. I believe the PSA is 1.302 ( I also have on the paper the number 21.9% urine... I'm not sure what that means right now). 

Part of me wishes I'd never gone there for another reason, then I'd never know about this. I have no history of cancer in the family at all.

Thanks for your help 

User
Posted 02 May 2024 at 20:08

Hi Adrian,

Thanks for your message.

An MRI is booked for later this month.

The original statement I have from the biopsy report suggests a second biopsy. The GP read that report afterwards and believed I should have a second biopsy. I don't know why the specialist didn't suggest this. I believe I will have more information after the MRI, but I will also be seeing another specialist for another opinion in the meantime. 

I won't rush into a decision.

User
Posted 03 May 2024 at 06:11

Originally Posted by: Online Community Member
I'm sorry if it sounded highly insensitive of it me to say that - it's just the stress of a new diagnosis. I'm just scared.

Hello again mate.

I don't think you've said a single wrong word. You're bound to be anxious, we all have been. Derek, is one of the nicest folk on here and  wasn't  in anyway criticising you. 

What confused me  is that it's usual for someone to have an MRI, then a biopsy so that the biopsy is guided by the scan results.   It was only after rereading your posts that I realised that your possible prostate problem had been revealed when investigating something else, which is why you've not yet had the scan. Like my school reports said 'Adrian should pay more attention in class' πŸ™‚

As Richard said it makes perfect sense to have another biopsy and second opinion following your MRI which will shed more light on the situation.

Please keep us updated and best of luck.

 

 

Edited by member 03 May 2024 at 06:27  | Reason: Typo

User
Posted 03 May 2024 at 07:30

Originally Posted by: Online Community Member

Hi Derek,

Thank you for the kind words. I'm sorry if it sounded highly insensitive of it me to say that - it's just the stress of a new diagnosis. I'm just scared.

The weeks between scans and tests I tend to forget I even have an issue, so yes, I'll be doing my best to do nice things with friends and family.

Thanks

Hi,

You’re not being insensitive, you’re just expressing your feelings which we all do on here, and sorry if I came across as having a go at you, believe me I wasn’t,😊 I was just trying to reassure you that we’ve all been through that stage of feeling life as we know it has ended. Yes, it might change a bit(maybe only for a while) but if you stay positive it makes your ‘journey’ soooo much easier. I’ve not had an easy time on HT but Ive got through it, PSA undetectable and looking forward to feeling like a man again🀞🀞🀞 I dont know whether I’m cured, and won’t know for quite a while until the HT wears off and my testosterone comes back. Its always at the back of my mind that it might come back but I’ve decided just to get on with having as much fun as possible.

Remember there are the Specialist nurses on here that are simply wonderful, and will take time to answer any questions and doubts you have.

All the best,

Derek

User
Posted 03 May 2024 at 07:41

Hi Derek,

You didn't come across that way at all, I'm just mindful of how I come across! I understand I'm not the only person here feeling like this - it's amazing all the thoughts that go through your mind when something like this happens πŸ™‚

Thank you for sharing your feelings too. I'm glad to hear you are feeling good. I think I am too, I'm just a bit confused by it all. Reading all the messages here really help.

I will still need to decide what to do. But I don't want to rush into an operation just yet. Hopefully the MRI will tell me more.

Thank you, and take care.

User
Posted 03 May 2024 at 12:09
Ok so I think you need to wait for the MRI and second biopsy before deciding on treatment. The Gleason 6 is good news but your young age and "bumpy" prostate are not and are likely to mean you will need treatment at some point.

Regarding your wedding if your partner wants kids suggest you consider having some sperm frozen now before they go sticking more needles in your prostate..

User
Posted 18 Jun 2024 at 09:05

I found the Royal Marsden 2nd opinion service really slick and professional:
https://www.royalmarsden.nhs.uk/private-care/second-opinion

 

User
Posted 18 Jun 2024 at 11:58

Have you checked out the Martini-Klinik Clinic in Germany? It’s one of the top rated and might be easier to get to.

User
Posted 01 Oct 2024 at 11:03

Hi All,

Just thought I'd post an update here.

After seeing two surgeons in different clinics here in CZ, I finally saw two oncologists at the cancer institute in the city where I live. They sent me for what they considered to be a better MRI scan than the previous one and another blood test. After inspecting the results, the general consensus was active surveillance for at least 5 years, with a targeted biopsy and another MRI scan in the new year. I will have blood tests every three months.

For me, this is the best outcome. When I informed the oncologist that the surgeon said I was too young for AS, he disagreed and said a surgeon will see those results and just push me into an operation. He told me the new MRI results show nothing particularly suspicious, and so the targeted biopsy will be necessary (not looking forward to that). I have to say that they have read over my results with much more consideration than the previous clinics.

Anyway, I know there's no magic wand to make it go away, but if anyone has any dietary tips etc that can help me, I'd greatly appreciate it. At least then I can feel like I'm actively doing something. Anyway, my next blood test is in December, so we'll see...

Thanks a lot,

C

User
Posted 01 Oct 2024 at 11:16

Thanks very much for the update. I hope your biopsy results are good and that you can continue with active surveillance.

Good luck mate.

User
Posted 01 Oct 2024 at 21:12
Sounds a good outcome. The thing about AS is that you are avoiding the side effects which are inevitable from either surgery or RT, for as long as possible. Though ongoing monitoring (especially biopsies) could be counted a side effect.

It seems a pretty good bet to me that problems detected in a single biopsy core aren't going to spread beyond the prostate capsule (i.e. what you don't want) without the growth first being detected in future tests. And that growth could be really quite slow.

Good luck.

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User
Posted 02 May 2024 at 13:40

Hi, 

May I ask whereabouts you are?

wherever it is they seem to have a different attitude to Pca than the prevailing one in the UK.

At 42 you'd unlikely to have had a PSA test and DRE here, unless you had a family history of Pca or had insisted on being tested, so for better or worse wouldn't be aware of your medical situation.

As you've not indicated a staging, cancer type or exact PSA and associated velocity, it would be difficult for anyone to offer any guidance, but an MRI and a second opinion sounds a sensible route to take.

It sounds like some kind of Focal therapy may be offered, it would be important to understand the full implications of this or any other proposed treatment so it may make sense for you to ask for these to be given in writing so that you can obtain an accurate and measured translation rather than relying on an in person one.

From the little details given it does sound to be an early caught, low grade  Pca so your prognosis is likely to be very favourable.

 

 

 

Edited by member 02 May 2024 at 13:47  | Reason: Not specified

User
Posted 02 May 2024 at 14:01

Hi Richard,

Thanks for your message. I am in the Czech Republic, where I believe the standard of healthcare is actually very good.

I had a separate, minor issue, where they stumbled upon the prostate issue largely by accident. I have no symptoms etc... But because it feels hard and lumpy, they took a PSA test, then later a biopsy, ultrasound and bone scan (all part of the procedure here - I don't know what it's like in the UK). All were clear. Apparently the PSA was only slightly high, but not necessarily concerning.

Gleason score 3+3, grade 1, non-aggressive. I believe the PSA is 1.302 ( I also have on the paper the number 21.9% urine... I'm not sure what that means right now). 

Part of me wishes I'd never gone there for another reason, then I'd never know about this. I have no history of cancer in the family at all.

Thanks for your help 

User
Posted 02 May 2024 at 19:39

Hi, 

Have you not yet had an MRI?

If your cancer is safely contained within the prostate, with such a low PSA, and you being so young, I would select AS.

What I can't understand is why your GP is suggesting a second biopsy and why your specialist is advising an operation?

 

Edited by member 02 May 2024 at 22:23  | Reason: Typo

User
Posted 02 May 2024 at 20:08

Hi Adrian,

Thanks for your message.

An MRI is booked for later this month.

The original statement I have from the biopsy report suggests a second biopsy. The GP read that report afterwards and believed I should have a second biopsy. I don't know why the specialist didn't suggest this. I believe I will have more information after the MRI, but I will also be seeing another specialist for another opinion in the meantime. 

I won't rush into a decision.

User
Posted 02 May 2024 at 22:01

Hi,

Fitstly the good times are NOT ‘all behind you’! There are so many men on here who have a much worse diagnosis than what you appear to have, but go omto have a very long and fulfilling life. I know it’s difficult but try to stay positive, keep active and be kind you yourself and family. Do lots of nice things together to stop you thinking the worst.

Everyone is scared and stressed when first diagnosed and the waiting is hard. But once you’ve been through all the tests you may have some difficult decisions to make regarding treatment, but once you’ve mad that choice and a treatment plan in place you will hopefully much more settled.

Good luck with your journey!

Derek

 

User
Posted 03 May 2024 at 05:09

Hi Derek,

Thank you for the kind words. I'm sorry if it sounded highly insensitive of it me to say that - it's just the stress of a new diagnosis. I'm just scared.

The weeks between scans and tests I tend to forget I even have an issue, so yes, I'll be doing my best to do nice things with friends and family.

Thanks

User
Posted 03 May 2024 at 06:11

Originally Posted by: Online Community Member
I'm sorry if it sounded highly insensitive of it me to say that - it's just the stress of a new diagnosis. I'm just scared.

Hello again mate.

I don't think you've said a single wrong word. You're bound to be anxious, we all have been. Derek, is one of the nicest folk on here and  wasn't  in anyway criticising you. 

What confused me  is that it's usual for someone to have an MRI, then a biopsy so that the biopsy is guided by the scan results.   It was only after rereading your posts that I realised that your possible prostate problem had been revealed when investigating something else, which is why you've not yet had the scan. Like my school reports said 'Adrian should pay more attention in class' πŸ™‚

As Richard said it makes perfect sense to have another biopsy and second opinion following your MRI which will shed more light on the situation.

Please keep us updated and best of luck.

 

 

Edited by member 03 May 2024 at 06:27  | Reason: Typo

User
Posted 03 May 2024 at 07:30

Originally Posted by: Online Community Member

Hi Derek,

Thank you for the kind words. I'm sorry if it sounded highly insensitive of it me to say that - it's just the stress of a new diagnosis. I'm just scared.

The weeks between scans and tests I tend to forget I even have an issue, so yes, I'll be doing my best to do nice things with friends and family.

Thanks

Hi,

You’re not being insensitive, you’re just expressing your feelings which we all do on here, and sorry if I came across as having a go at you, believe me I wasn’t,😊 I was just trying to reassure you that we’ve all been through that stage of feeling life as we know it has ended. Yes, it might change a bit(maybe only for a while) but if you stay positive it makes your ‘journey’ soooo much easier. I’ve not had an easy time on HT but Ive got through it, PSA undetectable and looking forward to feeling like a man again🀞🀞🀞 I dont know whether I’m cured, and won’t know for quite a while until the HT wears off and my testosterone comes back. Its always at the back of my mind that it might come back but I’ve decided just to get on with having as much fun as possible.

Remember there are the Specialist nurses on here that are simply wonderful, and will take time to answer any questions and doubts you have.

All the best,

Derek

User
Posted 03 May 2024 at 07:41

Hi Derek,

You didn't come across that way at all, I'm just mindful of how I come across! I understand I'm not the only person here feeling like this - it's amazing all the thoughts that go through your mind when something like this happens πŸ™‚

Thank you for sharing your feelings too. I'm glad to hear you are feeling good. I think I am too, I'm just a bit confused by it all. Reading all the messages here really help.

I will still need to decide what to do. But I don't want to rush into an operation just yet. Hopefully the MRI will tell me more.

Thank you, and take care.

User
Posted 03 May 2024 at 12:09
Ok so I think you need to wait for the MRI and second biopsy before deciding on treatment. The Gleason 6 is good news but your young age and "bumpy" prostate are not and are likely to mean you will need treatment at some point.

Regarding your wedding if your partner wants kids suggest you consider having some sperm frozen now before they go sticking more needles in your prostate..

User
Posted 20 May 2024 at 11:22

Hello everyone,

I saw a second specialist today, who, like the first, suggested I have the operation to remove the prostate. Apparently I am too young to have active surveillance in his opinion. I will have an MRI scan next week, but this specialist says the scan is not really important. 

According to him, I can wait until next year if I wish, but he strongly recommends the operation. I feel like I'm being pressured into it a bit, although at the same time of course I don't have any other answers. 

He says the chances of prolonged incontinence issues after operation is low, but issues with erections etc is 30-40 %. Everything seems like such a lottery to me, it's hard to make any decisions. 

Anyway, I will seek further opinions in Vienna (which is close to where I live now) and hopefully in the UK. Although I'm not sure how to get a referral there anymore? I wonder if UK doctors have a different approach in this issue?

Thanks

 

 

User
Posted 20 May 2024 at 11:53

Originally Posted by: Online Community Member
 Everything seems like such a lottery to me, it's hard to make any decisions. 

Never a truer word spoken.

Thanks for the update. Are you still having a second biopsy?

User
Posted 20 May 2024 at 16:00

Thanks for your reply Adrian. 

Although the original report suggested a second biopsy, neither of the two doctors I've seen have mentioned it. So I guess they believe it's not necessary. I'm not sure why.

User
Posted 17 Jun 2024 at 08:06

Hello again,

I had an MRI recently that simply supports the results of the biopsy. I'm still unsure about treatment (I've been recommended prostate removal with a robot) - does anyone know if it's possible for me to see a doctor in the UK for an opinion? I'm open to a session with a private doctor if I can't get NHS (I assume I won't be able to see someone on the NHS because I'm paying tax in CZ), I'd just like to talk to someone "back home". I'll be travelling to the UK at the end of the month.

Thank you!

C.

User
Posted 18 Jun 2024 at 09:05

I found the Royal Marsden 2nd opinion service really slick and professional:
https://www.royalmarsden.nhs.uk/private-care/second-opinion

 

User
Posted 18 Jun 2024 at 11:58

Have you checked out the Martini-Klinik Clinic in Germany? It’s one of the top rated and might be easier to get to.

User
Posted 18 Jun 2024 at 19:53

Thanks a lot for the suggestions, I will take a look!

C

User
Posted 19 Jun 2024 at 10:33

Hope your spirits are up. You are very young and my only advice is to get a second opinion (even if you have to pay for it). I had a RP at 59 and there are side effects which would be more of an issue if I were in my early 40s, so a clear decision based on expert guidance is important for you.

User
Posted 19 Jun 2024 at 19:08

Thanks a lot Rob. My spirits are surprisingly high, just with the odd moment of realisation.

I am concerned about the side effects, I am a very active person and I'm worried it will affect that.

I will take time to make a decision. 

Thank you 

User
Posted 01 Oct 2024 at 11:03

Hi All,

Just thought I'd post an update here.

After seeing two surgeons in different clinics here in CZ, I finally saw two oncologists at the cancer institute in the city where I live. They sent me for what they considered to be a better MRI scan than the previous one and another blood test. After inspecting the results, the general consensus was active surveillance for at least 5 years, with a targeted biopsy and another MRI scan in the new year. I will have blood tests every three months.

For me, this is the best outcome. When I informed the oncologist that the surgeon said I was too young for AS, he disagreed and said a surgeon will see those results and just push me into an operation. He told me the new MRI results show nothing particularly suspicious, and so the targeted biopsy will be necessary (not looking forward to that). I have to say that they have read over my results with much more consideration than the previous clinics.

Anyway, I know there's no magic wand to make it go away, but if anyone has any dietary tips etc that can help me, I'd greatly appreciate it. At least then I can feel like I'm actively doing something. Anyway, my next blood test is in December, so we'll see...

Thanks a lot,

C

User
Posted 01 Oct 2024 at 11:16

Thanks very much for the update. I hope your biopsy results are good and that you can continue with active surveillance.

Good luck mate.

User
Posted 01 Oct 2024 at 21:12
Sounds a good outcome. The thing about AS is that you are avoiding the side effects which are inevitable from either surgery or RT, for as long as possible. Though ongoing monitoring (especially biopsies) could be counted a side effect.

It seems a pretty good bet to me that problems detected in a single biopsy core aren't going to spread beyond the prostate capsule (i.e. what you don't want) without the growth first being detected in future tests. And that growth could be really quite slow.

Good luck.

 
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