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Know I shouldn't worry until I receive biopsy results but ......

User
Posted 27 Dec 2024 at 06:26

My PSA result was 40 . I read on here of others very concerned with anything over 6 

My MRI ' score ' was a 5 . I read that indicates cancer .

I had my biopsy on Christmas Eve and I am told not to worry - let's wait to see what the results show in 2 to 3 weeks.I am told by staff that they see others with far higher PSA scores . 

I am concerned about spread beyond the prostrate , during the biopsy the consultant whilst viewing images mentioned the need for a full body bone scan . I await the appointment , should I chase up on that ?

For some weeks I wake with pain in my right shoulder , less severe in my left .

I understand , of course , that I need to wait for the biopsy results but .........

User
Posted 10 Jan 2025 at 14:10

HAd the results totday finally. Yes tbh I thought we would get to this point quicker than after PSA 54 end of July/beginning of August, and brother with PCa. 

But anyway, they assure us there is no need to rush. 

Biopsy results: 12 out of 14 positive. They called it Grade 3 (but said a lot was only Grade 2) on a scale from 1 to 5 and GLeason 7 (4+3). 

Capsule is intact but there is perineural invasion on one side. Tumour(s?) are on both sides of prostate. 

Apparently there is cribriform, which is somewhat more aggressive? 

Next step is PET PSMA next week and then next consult on 31 January. Probable treatment options RP or radiotherapy with them kind of recommending the RP as "young and fit" (husband is late 50s). But they did say both should cure it, no difference in cure outcome so I guess we will consider it in peace. 

Not sure when to tell the kids The 19 yo is partially informed but the 16yo, 13yo and 9 yo are not yet. 

 

All the very best to all of you, and great news @Mick Whitts

Edited by member 10 Jan 2025 at 14:11  | Reason: Not specified

User
Posted 27 Dec 2024 at 10:16

Hi David.

I'm very sorry that you've had to join us but welcome to the forum, mate.

 Your PSA is quite high and the Likert score of your MRI suggests a very high likelihood of PCa. Were you given a provisional radiological cancer staging?

It's possible that the location of the suspicious area detected by the MRI, or your high PSA, triggered the bone scan request. Having said that, most of us end up having a bone scan somewhere along the line. Better sooner than later.

However, your elevated PSA and MRI scans are only indicators and can be influenced by other non cancerous conditions. We've had cases of high PSA and Likert scores that have not needed further treatment.

I know how worried you must feel, most of us have felt the same way. Waiting for results increases the anxiety. Most would agree that diagnosis, is the most stressful time. Once you're sure of the 'state of play', even if a further treatment plan is deemed necessary, you'll feel a lot more in control and secure, and can focus on getting better.

As for your shoulder pains. The chances are it won't be anything prostate related. I get bad pains in most of my joints, legs and lower back. They're all caused by arthritis which most of us old codgers suffer from. 🙂

Very best of luck mate.👍

Edited by member 27 Dec 2024 at 10:30  | Reason: Typo

User
Posted 10 Jan 2025 at 09:42

Fingers crossed for you Dave53 and Fragen.

I got good news after my biopsy which was no cancer detected. I was so prepared for bad news that it almost felt wrong when they discharged me. I had got myself all ready for dealing with having cancer that I wasn't ready for being told it wasn't there. Sounds weird I know, but my mind was working overtime on what having cancer would mean. As it does for everyone who has to undergo the testing process.

I hope that you get good news today and wish you well for the future. 

Mick 

User
Posted 10 Jan 2025 at 14:30

Hi Fragen.

Thank you very much for your update.

I hope the PMSA results are good, and that whatever further treatment you choose is successful. 

Good luck. 👍

User
Posted 10 Jan 2025 at 18:46

That's not the good news we were  all hoping for.  But at least that part of the waiting is over and a plan can be made for what you have to deal with.

I cant begin to imagine having to tell your children. But I never cease to be amazed by the resilience of kids when faced with bad news.  I would guess they will need to be informed and feel more involved in your recovery, rather than shield them from it. 

The future is not bleak, you will sort your way through this as a family, with the support of your medical team and friends both at home and here on the forum.

Stay positive and keep chatting when you need to.

Mick and Sandra xxxx

User
Posted 11 Jan 2025 at 08:05

David and Fragen

Wishing you both all the very best. You know the scores on the doors so now it is about choosing the best treatment plan for your individual circumstances and then hopefully getting on with your lives. Hopefully as you look back on 2025 this will all be just a very unpleasant bump in the road. As others said there will be a lot of treatment options open to you both. Don’t forget to try and build in some really pleasurable activities to look forward to and enjoy over the next few months.

User
Posted 11 Jan 2025 at 08:48

Hi David and Fragen,

Sorry you’ve found yourself in the club nobody wants to join, and sorry I’ve not been around recently  to offer you my support. Anyone that tells you not to worry just DOES NOT understand! It’s all part of the process of coming to terms with this disease…worry, anxiety, anger(why me?), sadness. And yes the waiting is by far the worst.

When diagnosed, my PSA was 36 and I was terrified it was so high…..then I found out some have PSA in the hundreds and even thousands. Nearly 3 years down the line, I’ve finished treatment (HT and RT) and hopefully cured, I say hopefully because I really won’t know until my testosterone comes back - This has just started to happen so the worrying goes on.What I’ve found helps is keep as active as possible, both mentally and and physically, concentrate in getting yourself in the best shape possible for whatever treatment is coming your way…it really does help. Also be good yourself and your family, do lots of nice things with them, things that make you happy. It won’t stop you worrying but it does help with your a ability to copy with it.
When you get a treatment plan in place, it does become easier.

David, if you have a Maggies Centre near you, please go along for a chat…you don’t need to make an appointment, just walk in. They will listen to you and be able to tell you what support groups they have. You might not think it’s for you, I didn’t, and it took my wife 6 months to persuade me to go along with her, and it was the best move I made in coming to terms with this disease. The fact you’ve joined this group suggests to me that you WOULD benefit from it. I really look forward to my weekly support group, some of which are quite tough to bear at times but I always come away feeling so much better.

I wish you both the best of luck on your journeys,

Derek

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User
Posted 27 Dec 2024 at 10:16

Hi David.

I'm very sorry that you've had to join us but welcome to the forum, mate.

 Your PSA is quite high and the Likert score of your MRI suggests a very high likelihood of PCa. Were you given a provisional radiological cancer staging?

It's possible that the location of the suspicious area detected by the MRI, or your high PSA, triggered the bone scan request. Having said that, most of us end up having a bone scan somewhere along the line. Better sooner than later.

However, your elevated PSA and MRI scans are only indicators and can be influenced by other non cancerous conditions. We've had cases of high PSA and Likert scores that have not needed further treatment.

I know how worried you must feel, most of us have felt the same way. Waiting for results increases the anxiety. Most would agree that diagnosis, is the most stressful time. Once you're sure of the 'state of play', even if a further treatment plan is deemed necessary, you'll feel a lot more in control and secure, and can focus on getting better.

As for your shoulder pains. The chances are it won't be anything prostate related. I get bad pains in most of my joints, legs and lower back. They're all caused by arthritis which most of us old codgers suffer from. 🙂

Very best of luck mate.👍

Edited by member 27 Dec 2024 at 10:30  | Reason: Typo

User
Posted 03 Jan 2025 at 11:22

Hi Adrian , 

Thanks for taking the time to reply .

I really appreciate your views and support , very helpful .

Hope things are on the up for you .

All the best mate 

User
Posted 10 Jan 2025 at 01:02

My husband is in a similar situation. His PSA tested at 54 in August so we have been worried about him having pCA since. He first took antibiotics to see if that would reduce it, as it was maybe prostatitis. In October then it was still v high (at some point 67 but I don't remember if that was October or November). Then he had an MRI scan early December and also PIRADS 5 (apparently two lesions), then had a biopsy on 10 December and at that they told him he should have a PET PSMA Scan and they would give him the results of both at the same time. 

However, the only call he got from the hospital was a couple days ago and as he was working he could not take it and there is no way to ring back. So not sure if they were trying to schedule scan (they said it would be difficult). 

So now we have the appointment tomorrow and I hope we at least get the results of the biopsy and can see whether they still want to do a scan. Pretty nervous so I guess that is why I am up at this time of night. I have been up since 4.20am this morning, had a mammoth work day but now that something like definitive information appears imminent I am so nervous. And of course aware that it must be much more acute for him. 

We need to get the kids up and out in the morning, then both work a bit and meet in the hospital. 

 

Hope you don't have to wait much longer!

 

 

User
Posted 10 Jan 2025 at 08:52

Yes despite the reassurances it's the waiting to hear that feeds the anxiety and fear . 

It sounds like your husband has been waiting to hear for a few months longer than me . My journey into the great unknown started on a Wednesday lin the last week of November with a blood test . At 6pm the same day my GP texted me with the result telling me that he had referred me to ' the rapid referral cancer unit ' . That was a blow . 3 days later , a Saturday afternoon at 4pm I got a call from someone ( at that stage I didn't know if it was a Doctor , a specialist or a nurse ) at my local hospitals Urology Unit. He told me that PSA score for my age should come in at around 5 and that mine was 40 . Frightening , the fact that this person was calling me on a Saturday to tell me my score was high .He was very supportive telling me to call him if I had any concerns. 2 weeks later I went in for an MRI. A few days later I texted the guy - who I have since discovered is a specialist Urology nurse . He answered my text in the week before Christmas saying that he was on leave but not to worry  and told me to call the Unit . I did and was told I would hear in a few weeks time . I again texted the nurse and he immediately said " that's just not good enough " and even though he was away from work he would  see what he could find out . At 9 that evening he texted me to say that I needed a biopsy and he would book me in to a clinic 4 days later - Christmas Eve. I had clearly stumbled across a true NHS hero .

All of that may sound a bit of a ramble but I really want to make clear how fortunate I've been to have found this guy.

During the biopsy mention was made - just a few words as an aside - of a need to get me in for a full body bone scan......." just in case it's spread " . Very worrying , in case what had spread . 16 days later , yesterday , I had the scan .

I was also called yesterday to be told that someone will call me at 3 today to talk me through the biopsy results .

Yes the worry is huge and the waiting has it's dark moments . I feel that my experience over the last 6 weeks could have been a lot more difficult without the care I have been shown.........but then ...

It occasionally occurs to me = am I being fast tracked because of ; high PSA , a worrying MRI , fears of "it spreading " .

On top of everything my football team are at rock bottom - although it's different with them -  there is only one thing which kills = the hope .

Thanks for sharing , it sounds that like me you have a big day today . All the best to you both 

User
Posted 10 Jan 2025 at 09:42

Fingers crossed for you Dave53 and Fragen.

I got good news after my biopsy which was no cancer detected. I was so prepared for bad news that it almost felt wrong when they discharged me. I had got myself all ready for dealing with having cancer that I wasn't ready for being told it wasn't there. Sounds weird I know, but my mind was working overtime on what having cancer would mean. As it does for everyone who has to undergo the testing process.

I hope that you get good news today and wish you well for the future. 

Mick 

User
Posted 10 Jan 2025 at 11:36

Fragen

I see you are based in Austria and I thought delays were the scourge of the NHS. Waiting for results is very difficult. I do hope things are clarified for you shortly. Wishing you all the very best.

User
Posted 10 Jan 2025 at 13:16

I live in Bristol, very pleased with the NHS 

User
Posted 10 Jan 2025 at 14:10

HAd the results totday finally. Yes tbh I thought we would get to this point quicker than after PSA 54 end of July/beginning of August, and brother with PCa. 

But anyway, they assure us there is no need to rush. 

Biopsy results: 12 out of 14 positive. They called it Grade 3 (but said a lot was only Grade 2) on a scale from 1 to 5 and GLeason 7 (4+3). 

Capsule is intact but there is perineural invasion on one side. Tumour(s?) are on both sides of prostate. 

Apparently there is cribriform, which is somewhat more aggressive? 

Next step is PET PSMA next week and then next consult on 31 January. Probable treatment options RP or radiotherapy with them kind of recommending the RP as "young and fit" (husband is late 50s). But they did say both should cure it, no difference in cure outcome so I guess we will consider it in peace. 

Not sure when to tell the kids The 19 yo is partially informed but the 16yo, 13yo and 9 yo are not yet. 

 

All the very best to all of you, and great news @Mick Whitts

Edited by member 10 Jan 2025 at 14:11  | Reason: Not specified

User
Posted 10 Jan 2025 at 14:30

Hi Fragen.

Thank you very much for your update.

I hope the PMSA results are good, and that whatever further treatment you choose is successful. 

Good luck. 👍

User
Posted 10 Jan 2025 at 18:46

That's not the good news we were  all hoping for.  But at least that part of the waiting is over and a plan can be made for what you have to deal with.

I cant begin to imagine having to tell your children. But I never cease to be amazed by the resilience of kids when faced with bad news.  I would guess they will need to be informed and feel more involved in your recovery, rather than shield them from it. 

The future is not bleak, you will sort your way through this as a family, with the support of your medical team and friends both at home and here on the forum.

Stay positive and keep chatting when you need to.

Mick and Sandra xxxx

User
Posted 10 Jan 2025 at 20:23

The results are in ......

I had a call from a specialist nurse this afternoon .

Prostrate cancer is present . On the Gleason scale measuring the nature of it I was told that 6 is progressing slowly whilst 10 is the most aggressive .

 

I held my breath hoping for a 7 or 8 ...only to be told that mine is looking like a 9 . Worrying .

 

The results of a bone scan I had yesterday did not show any added concerns of the cancer having spread to any bones . Good News 

 

I was told that I would get an appointment for a " more sensitive " PET scan which apparently seeks out any spread to other tissues , lymph nodes . Everything crossed .

 

Feels as though I am locked into a cycle of tests , MRIs, and scans and then letting my minds imagination run wild as I sit back to await results , verdicts , prognosis and hopefully soon a treatment plan .

 

Oh dear ......it is what it is

User
Posted 10 Jan 2025 at 20:27
So sorry to hear it looks like a 9. Of course my husband and I are new to this too, I am sure others can offer far more insight. But sorry you had to hear a higher number and wishing you all the best for the next scan and further path.
User
Posted 10 Jan 2025 at 20:32

That's tough to take in David!  

The relentless treadmill of testing, waiting, worrying goes on and on.

This new set of results has set the course for the next few weeks or so.

Then, as you say, a treatment plan.

The imagination is a truly frightening thing, when awake it was difficult enough, being able to shut it out a little by keeping busy. But getting to sleep and staying asleep without those intrusive thoughts is so hard.

I hope things stay manageable for you and that treatment begins as soon as possible.

Mick 

 

User
Posted 11 Jan 2025 at 00:15

Fragen & Mick , thank you so much x

It hurts , it may not be the worst, there is little to be done . Next come the options , the decisions . Little control over ones body , a complete surrender to them as know best , a closing of the eyes and a profound wish . Blue skies ahead 

User
Posted 11 Jan 2025 at 00:52

Hi David.

I eventually ended up Gleason 9 (4+5) and the cancer had breached the prostate capsule. T3a staging.

Almost two years ago I had robotic surgery and since then my PSA has remained undetectable. 

There are several others on here that are Gleason 9ers had have made similar recoveries. 

The good news is, yours seems confined to the prostate. I hope the PET scan confirms that.

Please keep us updated mate. We'll do our best to help and support you through this unsettling time.

User
Posted 11 Jan 2025 at 07:03

Thanks Adrian , 

It's helpful to hear a voice of reason from someone who has been there . I can't thank you enough for sharing .

It's dark times , dark in the sense that I don't know what's coming next . Strangely I don't feel that I fear what's on the horizon . 

I don't have a doomed outlook at the moment ......in fact I am not adopting much of a view beyond - let's wait and see what the next scan shows and how the medics plan to deal with it .

In the meantime.......

Thanks mate 

 

User
Posted 11 Jan 2025 at 08:05

David and Fragen

Wishing you both all the very best. You know the scores on the doors so now it is about choosing the best treatment plan for your individual circumstances and then hopefully getting on with your lives. Hopefully as you look back on 2025 this will all be just a very unpleasant bump in the road. As others said there will be a lot of treatment options open to you both. Don’t forget to try and build in some really pleasurable activities to look forward to and enjoy over the next few months.

User
Posted 11 Jan 2025 at 08:48

Hi David and Fragen,

Sorry you’ve found yourself in the club nobody wants to join, and sorry I’ve not been around recently  to offer you my support. Anyone that tells you not to worry just DOES NOT understand! It’s all part of the process of coming to terms with this disease…worry, anxiety, anger(why me?), sadness. And yes the waiting is by far the worst.

When diagnosed, my PSA was 36 and I was terrified it was so high…..then I found out some have PSA in the hundreds and even thousands. Nearly 3 years down the line, I’ve finished treatment (HT and RT) and hopefully cured, I say hopefully because I really won’t know until my testosterone comes back - This has just started to happen so the worrying goes on.What I’ve found helps is keep as active as possible, both mentally and and physically, concentrate in getting yourself in the best shape possible for whatever treatment is coming your way…it really does help. Also be good yourself and your family, do lots of nice things with them, things that make you happy. It won’t stop you worrying but it does help with your a ability to copy with it.
When you get a treatment plan in place, it does become easier.

David, if you have a Maggies Centre near you, please go along for a chat…you don’t need to make an appointment, just walk in. They will listen to you and be able to tell you what support groups they have. You might not think it’s for you, I didn’t, and it took my wife 6 months to persuade me to go along with her, and it was the best move I made in coming to terms with this disease. The fact you’ve joined this group suggests to me that you WOULD benefit from it. I really look forward to my weekly support group, some of which are quite tough to bear at times but I always come away feeling so much better.

I wish you both the best of luck on your journeys,

Derek

 
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