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My Story aged 47

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User
Posted 22 Jan 2024 at 17:34

Hi

 

After reading some of the posts on here I wanted to say hello and share my journey so far.

 

Aged 47 i went for a health check paid for by work.  All positive and a I have metabolic age of 32 - how chuffed was I.   I was offered a PSA test by the nurse, she explained what it was so I had it done.  It came back at 6.3 - urgh not entirely clear what it meant but it didn’t sound good.  

 

Made an appointment with the doc, had it retested, this time I stopped working out for a few days and no ejaculation.  Hopefully this would bring it back to normal levels.  Nope - 6.8.


The following few months are a blur, dream and with many mixed emotions.

 

The cystocopy was ok. Yay!

 

The MRI showed a 10mm lesion, and my PSA density was 0.3.  Christmas was interesting. Boo!

 

On Jan 17th 2024 I had the biopsy. Boo!

 

Now it’s a waiting game until 05/02/2024.  Praying and hoping for positive news on this day.  

 

Every little ailment seems amplified, it is ache normal? how long have I had it?  it’s going to be a tough few weeks.

 

Having got married in Aug 2023 it is not how we expected to celebrate our first year anniversary.

 

Rich

User
Posted 22 Jan 2024 at 18:05

Hi Rich,

I'm sorry you've had to find us, but I'm glad you have. As you're probably aware there are some very knowledgeable, kind and supportive people here, who'll be able to answer any questions you have.

Good luck with the results mate.

PS: I think I must have the metabolic age of a 6 month old. I pee myself, cry a lot and often throw tantrums.

Adrian

 

Edited by member 22 Jan 2024 at 18:09  | Reason: Not specified

User
Posted 22 Jan 2024 at 18:11

Hi Rich

As Adrian says, welcome to our completely non exclusive club. From experience, the next week or so is probably the hardest bit, waiting for your results.

Fingers crossed for a good outcome mate,  but whatever it is, there are lots of us on here to help and support you 👍

Ian.

User
Posted 22 Jan 2024 at 20:21

Rich

make sure your wife goes with you if possible, armed with a pen and paper. You will not remember everything you are told, especially if you are diagnosed with cancer. It can knock the wind from your sails when it happens (who’d have thought eh?….)

If your biopsy was positive, you want to know your Gleason score, stage, and grade group. Where the tumour is, how big it is and how close to edge of the prostate it is. They should tell you all of this, but these are the bits I can think of to write down.

I hope it goes well for you. Keep us posted and ask as many questions as you can think of. There is a lot of knowledge in this group 👍

Ian.

User
Posted 22 Jan 2024 at 20:23

I think the chances of you having serious prostate cancer are fairly slim. The chances of you having something which needs watching are more likely, but still moderately slim.

If the first thing the consultant says is "who are you?" - "oh didn't my secretary cancel this appointment" that would be good news.

If he says "oh! We found something interesting" then the following thread may help.

https://community.prostatecanceruk.org/posts/t29667-D-day-tomorrow#post285177

 

Dave

User
Posted 23 Jan 2024 at 09:18

Thanks Badger - some good points to consider.   
I am remaining positive that all is clear and I won’t need to do anything 😀

User
Posted 02 Feb 2024 at 17:51

Hi All

So I managed to get an earlier appointment.  The anxiety and depression were really kicking in so my consultant was able to fit me in sooner.  I was diagnosed with mild depression last year - think it might be upgraded from mild now. 😂

It is about as positive as I could have hoped, with the exception of this has all been a mistake, you are perfectly healthy Mr C.

- 16 cores were taken - 8 left and 8 right.

- All 8 from the right (where the 10mm lesion is) are all benign.

- 7 from the left are ok. 1 has some of the bad stuff.  Approx 2mm and has been rated Gleason 7 (3+4) 20% of 4 apparently.

- For now the consultant recommends active surveillance, PSA testing every 3 months for life (hopefully till I am 90+) and  I have a follow up meeting in 3 weeks to discuss the outcome from some sort of consultants steering meeting.

it was all pretty emotional.  Don’t think I made any sense with my questions, thank god for my wife she was able to communicate.

I have an ultrasound on my right rib next week as I have had a on / off soreness there for the last 3 weeks.  Fingers crossed there are no more surprises.

I realise that this is only the start of the journey and there will be plenty of ups and downs in the coming years.  But the relief of just knowing is incredible.

Any advise on moving forward is very much welcome.

Apologies this is pretty long, I didn’t think I would write so much. 

User
Posted 03 Feb 2024 at 09:45

Hi RichCrow,

Glad you results were encouraging, always nice to hear good news. The waiting on results is definitely the worst part, PSA anxiety every 3 months. If your GP is holding up results (I usually have to wait at least a week😟), give your CNS a phone and get the results a lot sooner. I only realised this recently and now get my results 2 days after the test

All the best,

Derek

User
Posted 22 Jan 2024 at 17:34

Hi

 

After reading some of the posts on here I wanted to say hello and share my journey so far.

 

Aged 47 i went for a health check paid for by work.  All positive and a I have metabolic age of 32 - how chuffed was I.   I was offered a PSA test by the nurse, she explained what it was so I had it done.  It came back at 6.3 - urgh not entirely clear what it meant but it didn’t sound good.  

 

Made an appointment with the doc, had it retested, this time I stopped working out for a few days and no ejaculation.  Hopefully this would bring it back to normal levels.  Nope - 6.8.


The following few months are a blur, dream and with many mixed emotions.

 

The cystocopy was ok. Yay!

 

The MRI showed a 10mm lesion, and my PSA density was 0.3.  Christmas was interesting. Boo!

 

On Jan 17th 2024 I had the biopsy. Boo!

 

Now it’s a waiting game until 05/02/2024.  Praying and hoping for positive news on this day.  

 

Every little ailment seems amplified, it is ache normal? how long have I had it?  it’s going to be a tough few weeks.

 

Having got married in Aug 2023 it is not how we expected to celebrate our first year anniversary.

 

Rich

User
Posted 22 Jan 2024 at 19:40

52 when diagnosed read my profile if you want to see my journey so far 

Advice, take someone with you, can be a lot to take in. You should be assigned a uro-oncology nurse who will be available to answer questions post meeting. At my meeting my consultant was quite blunt but clinical, told me I needed to take action.  The Nurse took me to another meeting room afterwards and took me back through the results.  I have found the clinical nurses to be excellent. Futher don't forget there are the nurses on the prostate cancer helpline who are just brilliant, can't praise them enough.

User
Posted 22 Jan 2024 at 21:03

Hi Rich,

Do you have an immediate family member (father or brother) with history of prostate cancer?

Thanks,

Omar

User
Posted 23 Jan 2024 at 06:23

Morning Rich,

Ask if you can have copies of MRI and biopsy reports. I was referred by my GP and consultants used to send him letters summaring these consultations. If this applies to you make sure they send you a copy to.

Obviously all consultants are different, but I've found many seem to have an air of self importance, don't let them rush you. Being polite but assertive, will help ensure your questions and concerns are fully addressed.

Adrian.

Edited by member 23 Jan 2024 at 06:28  | Reason: Typo

User
Posted 23 Jan 2024 at 08:12

My advise would be do not take pen and paper with you as you and your wife want to concentrate on what is being said to you as you will be nervous and don't want to miss anything.

Take your phone in the meeting and I form the consultant/oncologist you wish to record the meeting, that's what I did. 

When I got home made a cup of tea and replayed it and then you can take it all in, from there take notes of what you don't understand and then you can ring up your team and ask them to clarify any points.

Good luck.

Edited by member 23 Jan 2024 at 08:12  | Reason: Grammar error

User
Posted 03 Feb 2024 at 00:33

Glad you managed to get an earlier appointment Rich. It really is the worst part the waiting isn’t it.

It was very strange that even though my husband was diagnosed, and with some spread it was still a little relief as I had imagined all sorts 🤦🏻‍♀️ 

Sounds good that they’re happy to watch and wait, it’s hopefully one of those very slow growing cancers that you can live happily with for many years….as many do without even knowing.

It’s difficult to get your head around the diagnosis especially being so young but definitely not the worst news you could have had. Can sometimes be a blessing in disguise to make sure you get on and live every minute the best way possible. 

Take care 

Elaine

User
Posted 03 Feb 2024 at 00:36

Your results sound very good Rich. I think you'll  be fine mate.

Adrian

 

 

User
Posted 03 Feb 2024 at 09:36

Thanks Elaine - the waiting and uncertainty are certainly the worst part of it.  But as you say i feel lucky to now know and all being well nothing well ever be needed.

I hope your husband is doing well.


Thanks Adrian.  

User
Posted 03 Feb 2024 at 16:19

Originally Posted by: Online Community Member

If your GP is holding up results (I usually have to wait at least a week😟), give your CNS a phone and get the results a lot sooner. I only realised this recently and now get my results 2 days after the test

This is one of the things that I appreciate about the French health system. I phone up the day before for a blood test appointment, go in at 10am for it and the results are emailed back to me (cc the doctor) by 3pm. It may just be the region I live in, but when I phone the doctor for an appointment, the secretary asks me what day and time I would like. My SiL had to wait 3 weeks for a 10 minute appointment in Scotland.

It's certainly helped on the PCa pathway.

User
Posted 03 Feb 2024 at 17:40

Originally Posted by: Online Community Member
Forgive my ignorance.  What is CNS?

Clinical nurse specialist.

You should have one allocated to you.

 

Edited by member 03 Feb 2024 at 17:42  | Reason: Not specified

Show Most Thanked Posts
User
Posted 22 Jan 2024 at 18:05

Hi Rich,

I'm sorry you've had to find us, but I'm glad you have. As you're probably aware there are some very knowledgeable, kind and supportive people here, who'll be able to answer any questions you have.

Good luck with the results mate.

PS: I think I must have the metabolic age of a 6 month old. I pee myself, cry a lot and often throw tantrums.

Adrian

 

Edited by member 22 Jan 2024 at 18:09  | Reason: Not specified

User
Posted 22 Jan 2024 at 18:11

Hi Rich

As Adrian says, welcome to our completely non exclusive club. From experience, the next week or so is probably the hardest bit, waiting for your results.

Fingers crossed for a good outcome mate,  but whatever it is, there are lots of us on here to help and support you 👍

Ian.

User
Posted 22 Jan 2024 at 18:51
Thanks both - much appreciated.

This “PS: I think I must have the metabolic age of a 6 month old. I pee myself, cry a lot and often throw tantrums.” made me chuckle 😂

Any advice for results meeting with the consultant would be welcome.

User
Posted 22 Jan 2024 at 19:40

52 when diagnosed read my profile if you want to see my journey so far 

Advice, take someone with you, can be a lot to take in. You should be assigned a uro-oncology nurse who will be available to answer questions post meeting. At my meeting my consultant was quite blunt but clinical, told me I needed to take action.  The Nurse took me to another meeting room afterwards and took me back through the results.  I have found the clinical nurses to be excellent. Futher don't forget there are the nurses on the prostate cancer helpline who are just brilliant, can't praise them enough.

User
Posted 22 Jan 2024 at 19:47

Thanks Jim 👍🏼 for the great info

User
Posted 22 Jan 2024 at 20:21

Rich

make sure your wife goes with you if possible, armed with a pen and paper. You will not remember everything you are told, especially if you are diagnosed with cancer. It can knock the wind from your sails when it happens (who’d have thought eh?….)

If your biopsy was positive, you want to know your Gleason score, stage, and grade group. Where the tumour is, how big it is and how close to edge of the prostate it is. They should tell you all of this, but these are the bits I can think of to write down.

I hope it goes well for you. Keep us posted and ask as many questions as you can think of. There is a lot of knowledge in this group 👍

Ian.

User
Posted 22 Jan 2024 at 20:23

I think the chances of you having serious prostate cancer are fairly slim. The chances of you having something which needs watching are more likely, but still moderately slim.

If the first thing the consultant says is "who are you?" - "oh didn't my secretary cancel this appointment" that would be good news.

If he says "oh! We found something interesting" then the following thread may help.

https://community.prostatecanceruk.org/posts/t29667-D-day-tomorrow#post285177

 

Dave

User
Posted 22 Jan 2024 at 20:27

Thanks Dave. I knew you’d sent me a great list, but couldn’t for the life of me remember what I’d called the thread 👍

User
Posted 22 Jan 2024 at 21:03

Hi Rich,

Do you have an immediate family member (father or brother) with history of prostate cancer?

Thanks,

Omar

User
Posted 22 Jan 2024 at 21:39

Thanks Ian - some great points here.  Pen and paper is something I’ll definitely do 👍🏼

Hi Omar - lucky not.  My dad is 85 in 2 weeks.  I am the lucky first one to go through this.   I suppose that is a positive in some way. Ok

Hi Dave - "oh didn't my secretary cancel this appointment" that would be a beautiful feeling 🙏🏼 I hope it goes that way.  Thanks for the link and I hope you are right that it is something “mild”

Edited by member 22 Jan 2024 at 21:44  | Reason: Not specified

User
Posted 22 Jan 2024 at 21:50

Hi Rich,

Did they make any comments about the prostate size during cystoscopy, like enlarged prostate?

Also, was the 2nd PSA test after the cystoscopy or before it, and

how long was the 2nd test after the 1st one?

Thanks,

Omar

Edited by member 22 Jan 2024 at 21:51  | Reason: Not specified

User
Posted 22 Jan 2024 at 21:58

Hey

Nothing other than the bladder neck begin a little high and a tiny protrusion ( I think ) which is due to weak bladder muscles.

MRI showed the bladder as 21cc.


The PSA were before the cystoscopy and about 4 weeks apart.

Rich

Edited by member 22 Jan 2024 at 21:59  | Reason: Added bladder size

User
Posted 23 Jan 2024 at 04:54

Hi Rich,

I'm intrigued by your story because it wasn't long ago when I was at the same age as yours - I turned 49 last week.

For me it was PSA velocity doubling in 12-month period, but remained within normal range (<2.5).

So I have few more questions if you don't mind:

- Have you taken COVID vaccine or tested positive for COVID in the 6-12 months prior to PSA test?

- How's your bowel movement, ie, any constipation before PSA test?

- Have you noticed any changes in urine flow:

-- frequency of urination especially at night?

-- quality of urination: lacks force/interrupted/hesitancy when starting urination?

-- any pain (burn sensation) during or after urination?

From your original post I'm assuming your 1st PSA test was at the age of 47, correct?

Edited by member 23 Jan 2024 at 05:00  | Reason: Not specified

User
Posted 23 Jan 2024 at 06:23

Morning Rich,

Ask if you can have copies of MRI and biopsy reports. I was referred by my GP and consultants used to send him letters summaring these consultations. If this applies to you make sure they send you a copy to.

Obviously all consultants are different, but I've found many seem to have an air of self importance, don't let them rush you. Being polite but assertive, will help ensure your questions and concerns are fully addressed.

Adrian.

Edited by member 23 Jan 2024 at 06:28  | Reason: Typo

User
Posted 23 Jan 2024 at 08:12

My advise would be do not take pen and paper with you as you and your wife want to concentrate on what is being said to you as you will be nervous and don't want to miss anything.

Take your phone in the meeting and I form the consultant/oncologist you wish to record the meeting, that's what I did. 

When I got home made a cup of tea and replayed it and then you can take it all in, from there take notes of what you don't understand and then you can ring up your team and ask them to clarify any points.

Good luck.

Edited by member 23 Jan 2024 at 08:12  | Reason: Grammar error

User
Posted 23 Jan 2024 at 09:14

Originally Posted by: Online Community Member

Hi Omar - it’s always a bit worrying especially when it is higher than you expect.  Having read your story it looks like you have a solid plan in place.

I’ll try and answer as best I can.

- Have you taken COVID vaccine or tested positive for COVID in the 6-12 months prior to PSA test? No

- How's your bowel movement, ie, any constipation before PSA test? Normal

- Have you noticed any changes in urine flow: No

-- frequency of urination especially at night?  No - I have never had to get up at night to pee. Even now.

-- quality of urination: lacks force/interrupted/hesitancy when starting urination?  No

-- any pain (burn sensation) during or after urination? No

From your original post I'm assuming your 1st PSA test was at the age of 47, correct? Yes

User
Posted 23 Jan 2024 at 09:16

Thanks Adrian.

Something I haven’t asked for but will do.

User
Posted 23 Jan 2024 at 09:18

Thanks Badger - some good points to consider.   
I am remaining positive that all is clear and I won’t need to do anything 😀

User
Posted 02 Feb 2024 at 17:51

Hi All

So I managed to get an earlier appointment.  The anxiety and depression were really kicking in so my consultant was able to fit me in sooner.  I was diagnosed with mild depression last year - think it might be upgraded from mild now. 😂

It is about as positive as I could have hoped, with the exception of this has all been a mistake, you are perfectly healthy Mr C.

- 16 cores were taken - 8 left and 8 right.

- All 8 from the right (where the 10mm lesion is) are all benign.

- 7 from the left are ok. 1 has some of the bad stuff.  Approx 2mm and has been rated Gleason 7 (3+4) 20% of 4 apparently.

- For now the consultant recommends active surveillance, PSA testing every 3 months for life (hopefully till I am 90+) and  I have a follow up meeting in 3 weeks to discuss the outcome from some sort of consultants steering meeting.

it was all pretty emotional.  Don’t think I made any sense with my questions, thank god for my wife she was able to communicate.

I have an ultrasound on my right rib next week as I have had a on / off soreness there for the last 3 weeks.  Fingers crossed there are no more surprises.

I realise that this is only the start of the journey and there will be plenty of ups and downs in the coming years.  But the relief of just knowing is incredible.

Any advise on moving forward is very much welcome.

Apologies this is pretty long, I didn’t think I would write so much. 

User
Posted 03 Feb 2024 at 00:33

Glad you managed to get an earlier appointment Rich. It really is the worst part the waiting isn’t it.

It was very strange that even though my husband was diagnosed, and with some spread it was still a little relief as I had imagined all sorts 🤦🏻‍♀️ 

Sounds good that they’re happy to watch and wait, it’s hopefully one of those very slow growing cancers that you can live happily with for many years….as many do without even knowing.

It’s difficult to get your head around the diagnosis especially being so young but definitely not the worst news you could have had. Can sometimes be a blessing in disguise to make sure you get on and live every minute the best way possible. 

Take care 

Elaine

User
Posted 03 Feb 2024 at 00:36

Your results sound very good Rich. I think you'll  be fine mate.

Adrian

 

 

User
Posted 03 Feb 2024 at 09:36

Thanks Elaine - the waiting and uncertainty are certainly the worst part of it.  But as you say i feel lucky to now know and all being well nothing well ever be needed.

I hope your husband is doing well.


Thanks Adrian.  

User
Posted 03 Feb 2024 at 09:45

Hi RichCrow,

Glad you results were encouraging, always nice to hear good news. The waiting on results is definitely the worst part, PSA anxiety every 3 months. If your GP is holding up results (I usually have to wait at least a week😟), give your CNS a phone and get the results a lot sooner. I only realised this recently and now get my results 2 days after the test

All the best,

Derek

User
Posted 03 Feb 2024 at 16:19

Originally Posted by: Online Community Member

If your GP is holding up results (I usually have to wait at least a week😟), give your CNS a phone and get the results a lot sooner. I only realised this recently and now get my results 2 days after the test

This is one of the things that I appreciate about the French health system. I phone up the day before for a blood test appointment, go in at 10am for it and the results are emailed back to me (cc the doctor) by 3pm. It may just be the region I live in, but when I phone the doctor for an appointment, the secretary asks me what day and time I would like. My SiL had to wait 3 weeks for a 10 minute appointment in Scotland.

It's certainly helped on the PCa pathway.

User
Posted 03 Feb 2024 at 16:51

Thanks Derek - great bit of info 👍🏼

Forgive my ignorance.  What is CNS?

User
Posted 03 Feb 2024 at 17:40

Originally Posted by: Online Community Member
Forgive my ignorance.  What is CNS?

Clinical nurse specialist.

You should have one allocated to you.

 

Edited by member 03 Feb 2024 at 17:42  | Reason: Not specified

User
Posted 05 Feb 2024 at 06:59

Great, and thanks 👍🏼

User
Posted 02 May 2024 at 12:26

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

Hi Omar - it’s always a bit worrying especially when it is higher than you expect.  Having read your story it looks like you have a solid plan in place.

I’ll try and answer as best I can.

- Have you taken COVID vaccine or tested positive for COVID in the 6-12 months prior to PSA test? No

- How's your bowel movement, ie, any constipation before PSA test? Normal

- Have you noticed any changes in urine flow: No

-- frequency of urination especially at night?  No - I have never had to get up at night to pee. Even now.

-- quality of urination: lacks force/interrupted/hesitancy when starting urination?  No

-- any pain (burn sensation) during or after urination? No

From your original post I'm assuming your 1st PSA test was at the age of 47, correct? Yes

Hi, could I ask what relevance your question re COVID has?  And could it really impact up to 12 months prior to a PSA test?

User
Posted 04 May 2024 at 06:04

I'm relatively new to both this forum and the PSA business too 😅,

but somebody on a different post had shared an article/news that both COVID and its vaccination can cause a temporary rise/spike in PSA level, but I'm not sure about the duration of impact.

I'm 49 of age with a total PSA level 1.30, may I know what brought you here?

Thanks,

Omar

 

Edited by member 04 May 2024 at 06:11  | Reason: Not specified

 
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