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User
Posted 07 Apr 2022 at 14:09

Hi. 

My first time here so a little worried as I expect most of us are. 

After a recent PSA test at a local screening set up by the local Lions group I had high levels and was advised to get a second blood test at my doctors. This was also high so I had a DRE at the doctors. He said everything felt normal but because of the high levels he was going to refer me.

My question is, which department am I likely to be referred to and what can I expect at the first appointment?

Many thanks in advance 

User
Posted 07 Apr 2022 at 17:10

Hi Telford 56, all the best - this is a very good site for asking questions and getting helpful answers

User
Posted 07 Apr 2022 at 17:20

Hi Telford, I can imagine the emotions you are going through but try not to panic. I had a similar PSA to you but that is only an indicator that further investigation is merited.

I was referred to Urolgy who ordered an MRI. The results of that scan led to a biopsy then bone scan which confirmed I had a low grade cancer but that it was contained within the prostate with no signs of spread.

that meant there were different treatment options available to me ( surgery or radiotherapy), both which had high percentage likelihood of a ‘ cure’.

try and take it one step at a time, you are not yet diagnosed with anything and even if you are, there are options.

regards, GG

User
Posted 07 Apr 2022 at 15:05

Telford, welcome to the site no wants to be on. I expect you will be seen by a urologist who specialises in prostate issues.  Do you know what your PSA results were.  My first appointment was over eight years ago and procedures have changed since then.

Thanks Chris

Edited by member 07 Apr 2022 at 15:08  | Reason: Not specified

User
Posted 07 Apr 2022 at 15:12
You'll be referred to your local urology team. After my referral last November with a PSA of 39 I was seen by a urologist registrar who carried out another DRE (my GP had also done one when she sent me for a PSA and had said it felt normal) the registrar said it felt hard on one side. She sent me for another PSA (which came out at 40) & arranged a MRI, Bone scan & biopsy they were all undertaken in the month before Christmas.

I'm still relatively new to this but many on here have much more experience and knowledge so you're in the right place to ask questions. The best advice I was given was that there's a danger PC will take over your life DON'T LET IT! Easier said than done but good advice I think. Good luck I hope the PSA is not correct.

User
Posted 07 Apr 2022 at 15:13

Hello,

Sorry you find yourself on this path which can be a very anxious time because it's all new and you don't know how it's going to pan out.

You will have been referred to urology on what's called a 2 week wait (max) referral path, which is used for suspected cancer. In truth, this level of speed isn't needed for prostate cancer and in the current COVID situation is often not quite met, but it is necessary for some other cancers and it's a universal process.

Some urology departments run a one-stop-shop where you come in for a day, and they try to do most of the procedures. Sometimes, they do an MRI scan before the one-stop-shop. So you might either get an invite for an MRI scan or an invite to a urology one-stop-shop (which would probably start with an MRI scan).

Based on the MRI scan, PSA level, and a DRE, they'll decide what needs checking next, or advise that you don't have prostate cancer.

Wishing you all the best, and do come back with any questions, and there are no silly questions, so ask whatever springs into your mind.

 

User
Posted 07 Apr 2022 at 15:58

Hi Chris

Thanks for the reply 

My levels were 17 in the first and 19 in the second one 

User
Posted 17 Aug 2022 at 12:38

I'm going to say 95% lose libido and have ED whilst on HT. One of the posters ChrisJ hasn't suffered too severely but nearly everyone else does.

About a year after HT stops you will have recovered to some extent. Andy62 sometimes gives talks on surviving HT if you follow his advise you will probably recover fairly well.

Dave

User
Posted 17 Aug 2022 at 13:59
We used to have a very active member of the forum who lost no libido at all on HT or, as his disease progressed, on the various drugs he took as part of trials - drugs which are now available to all, such as abiraterone and enzalutimide. He was still having penetrative sex almost up to the end of life stage. Look him up in the member search - his name was Alathays
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 17 Aug 2022 at 14:04

Originally Posted by: Online Community Member

Hi Nick

Thanks for that. I guess its just a case of wait and see which and how severe I get the side effects.

 

Re. The loss of libido and possible ED is there anybody who didn't experience it or has everyone on HT had it and to what extent. 

HT doesn't cause ED, just loss of libido. You may still get erections even if your brain cannot imagine what to do with them! A past member once described loss of libido thus "I looked at my wife's beautiful bum and may as well have been looking at a lump of concrete. 

Radiotherapy may cause ED but this is usually some years later - 5 years is often quoted. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User
Posted 07 Apr 2022 at 15:05

Telford, welcome to the site no wants to be on. I expect you will be seen by a urologist who specialises in prostate issues.  Do you know what your PSA results were.  My first appointment was over eight years ago and procedures have changed since then.

Thanks Chris

Edited by member 07 Apr 2022 at 15:08  | Reason: Not specified

User
Posted 07 Apr 2022 at 15:12
You'll be referred to your local urology team. After my referral last November with a PSA of 39 I was seen by a urologist registrar who carried out another DRE (my GP had also done one when she sent me for a PSA and had said it felt normal) the registrar said it felt hard on one side. She sent me for another PSA (which came out at 40) & arranged a MRI, Bone scan & biopsy they were all undertaken in the month before Christmas.

I'm still relatively new to this but many on here have much more experience and knowledge so you're in the right place to ask questions. The best advice I was given was that there's a danger PC will take over your life DON'T LET IT! Easier said than done but good advice I think. Good luck I hope the PSA is not correct.

User
Posted 07 Apr 2022 at 15:13

Hello,

Sorry you find yourself on this path which can be a very anxious time because it's all new and you don't know how it's going to pan out.

You will have been referred to urology on what's called a 2 week wait (max) referral path, which is used for suspected cancer. In truth, this level of speed isn't needed for prostate cancer and in the current COVID situation is often not quite met, but it is necessary for some other cancers and it's a universal process.

Some urology departments run a one-stop-shop where you come in for a day, and they try to do most of the procedures. Sometimes, they do an MRI scan before the one-stop-shop. So you might either get an invite for an MRI scan or an invite to a urology one-stop-shop (which would probably start with an MRI scan).

Based on the MRI scan, PSA level, and a DRE, they'll decide what needs checking next, or advise that you don't have prostate cancer.

Wishing you all the best, and do come back with any questions, and there are no silly questions, so ask whatever springs into your mind.

 

User
Posted 07 Apr 2022 at 15:58

Hi Chris

Thanks for the reply 

My levels were 17 in the first and 19 in the second one 

User
Posted 07 Apr 2022 at 16:00

Hi Les

Thanks for taking the time to reply. 

I guess it's a case of wait and see now and not think  the worst

User
Posted 07 Apr 2022 at 16:02

Hi Andy 

Thanks for the reply 

It is indeed the Urology dept as my wife has just told me the letter has arrived today. 

So I would assume another DRE is likely and then see what happens after that 

User
Posted 07 Apr 2022 at 17:10

Hi Telford 56, all the best - this is a very good site for asking questions and getting helpful answers

User
Posted 07 Apr 2022 at 17:20

Hi Telford, I can imagine the emotions you are going through but try not to panic. I had a similar PSA to you but that is only an indicator that further investigation is merited.

I was referred to Urolgy who ordered an MRI. The results of that scan led to a biopsy then bone scan which confirmed I had a low grade cancer but that it was contained within the prostate with no signs of spread.

that meant there were different treatment options available to me ( surgery or radiotherapy), both which had high percentage likelihood of a ‘ cure’.

try and take it one step at a time, you are not yet diagnosed with anything and even if you are, there are options.

regards, GG

User
Posted 07 Apr 2022 at 17:59

Well the letter doesn't give much away. Just that an appointment has been made. Is it likely that they may do an MRI, if needed, on the day, or would it be more likely to be another appointment? 

User
Posted 07 Apr 2022 at 19:12
When I made my first visit to Urology after referral by my GP, we started with a DRE. This caused the nurse practitioner to send me for an MRI the same morning. I had a bone scan a few days after that, and then a few days later a visit to the urologist who gave me the news I was expecting - prostate cancer. Then I got on the 'train' - appontment with a surgeon, then (on another day) appointment with an oncologist, and armed with all the information I had to choose which treatment path I wanted. I chose within a couple of days, but could have taken a couple of weeks had I wanted. Then I just had to meet the urology team leader to sign the paperwork, and off we went! Once diagnosed, things move forward, maybe not quickly but with an inevitability! For me, hormone therapy for 6 months, then radio therapy for 20 sessions (5 days per week - weekends off!). I did not need any more hormone therapy after that, although it seems some people do. Each case is different. My advice - try not to panic, and take it one day at a timr '. Prostate cancer is very common, and in the early stages is very treatable.

best wishes,

Hermit

User
Posted 07 Apr 2022 at 22:28
Hello Telford56, it’s a worrying time and each area of the country does things slightly differently. Following a raised PSA and DRE, my husband was referred to a urologist who arranged a mri. The first appt with him was fact finding, family history, general health etc. Depending on those results the next step was a biopsy and then a bone scan. Just take it one step at a time and try not to think too far ahead (easier said than done). A separate appointment was made for his MRI which is usual practice. Lots of great help, support and advice on here x
User
Posted 08 Apr 2022 at 11:33

I would echo the statements made and take each step before reaching any conclusions. This is a great site to get support snd feedback.

should the results indicate prostate cancer I would strongly suggest you do your own research as well as take advise from your urologist. Look at my post on alternative focal therapy options as well as the more standard but more invasive ones which come with attendant side effects .

 

Be positive as treatment options are available and outcomes are good

Paul

 

 

User
Posted 14 May 2022 at 16:51

Just thought I'd post a little update. Had my appointment at the Urology dept but despite not finding anything with the DRE decided to send me for an MRI scan. That was 2 weeks ago today. I have not received the results as yet but am guessing it was 3 or above as, in todays post I have received an appointment for a biopsy in 3 weeks time. Hopefully I can speak to someone on Monday to find out what the exact results were. 

User
Posted 14 May 2022 at 17:01

Hi Telford 56, my OH had a PSA test from our GP, got referred  to Urology, they did a scan and DRE, then a MRI and bone scan, had a meeting with the urologist and got the results and details of suitable treatments, appointment with surgeon (RP) and oncologist (RT/HT), referral to an oncologist at a different hospital to look into Brachytherapy & Nanoknife (the first came back with HDR Brachy, 15 sessions of RT and 9 month HT) the second we have not heard from.

OH made up his mind and opted for surgery (that is next week).  

There are other treatments available and it is worth asking - HIFU & Cryotherepy 

User
Posted 27 Jul 2022 at 09:37

Well just a quick update. Unfortunately the results of the biopsy did find a surprisingly high amount of cancer on the left side. Grade group 5.

Was sent for a bone scan which fortunately found that the cancer hadn't spread and is contained in the prostate. 

So I have an appointment next week where the likelihood appears that the treatment will start with hormone treatment followed by Radiotherapy. 

I'm aware of the side effects of the HT but I guess it's just a matter of wait and see as I imagine each person is different amd will be affected in different ways and at different levels 

The one that is  worrying me the most is the loss of libido. I am wondering how soon this will happen after starting the HT and if there is anything I can do to help the situation. I guess these are the sort of questions I should be asking at the appointment next week but thought I would ask in here and try and find out how people who have been through the experience have been affected. 

Thanks in advance 

User
Posted 15 Aug 2022 at 13:44

Well 2 weeks of taking Bicalutamide and first Prostap injection tomorrow means the process and start of the long journey has begun. I guess its just a case now of fingers crossed, hope for the best and just see what happens with the side effects 

User
Posted 16 Aug 2022 at 12:55
Hi Telford56....I'm on Prostrap (and have been for circa 18 months now); Have a look at my Bio for a rough idea of what to expect (and from the RT etc), obviously it will affect each person differently .... but any q's fire away.

Andy62 is great for answering q's ref libido etc and runs some excellent Zoom mtgs about all things PC related :), safe to say mine went downhill pretty rapidly I'm afraid.

Rgds,

Nick

User
Posted 17 Aug 2022 at 11:03

Hi Nick

Thanks for that. I guess its just a case of wait and see which and how severe I get the side effects.

 

Re. The loss of libido and possible ED is there anybody who didn't experience it or has everyone on HT had it and to what extent. 

User
Posted 17 Aug 2022 at 12:38

I'm going to say 95% lose libido and have ED whilst on HT. One of the posters ChrisJ hasn't suffered too severely but nearly everyone else does.

About a year after HT stops you will have recovered to some extent. Andy62 sometimes gives talks on surviving HT if you follow his advise you will probably recover fairly well.

Dave

User
Posted 17 Aug 2022 at 13:59
We used to have a very active member of the forum who lost no libido at all on HT or, as his disease progressed, on the various drugs he took as part of trials - drugs which are now available to all, such as abiraterone and enzalutimide. He was still having penetrative sex almost up to the end of life stage. Look him up in the member search - his name was Alathays
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 17 Aug 2022 at 14:04

Originally Posted by: Online Community Member

Hi Nick

Thanks for that. I guess its just a case of wait and see which and how severe I get the side effects.

 

Re. The loss of libido and possible ED is there anybody who didn't experience it or has everyone on HT had it and to what extent. 

HT doesn't cause ED, just loss of libido. You may still get erections even if your brain cannot imagine what to do with them! A past member once described loss of libido thus "I looked at my wife's beautiful bum and may as well have been looking at a lump of concrete. 

Radiotherapy may cause ED but this is usually some years later - 5 years is often quoted. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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