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User
Posted 13 Jul 2024 at 18:09

Hi,

A brief history of where I’m up to so far:

I’m in my mid 40’s. I went to my GP due to having issues getting up numerous times throughout the night for a pee and some dribbling. He did a PSA test which came back at 4.5.

Went back for a DRE and he said it seemed fine, sent me away and requested a further PSA in a few weeks. That came back at 4.5, so was referred to urology.

Consultant did DRE and said prostate seemed enlarged and sent me for MRI. PSA density came back slightly over at 0.16 so he said I should have biopsy due to strong family history.

I went for the biopsy, then got a call a couple of weeks later to arrange to see Consultant for results. I received a letter from biopsy saying histology results have gone to MDT and appointment made with consultant to discuss results.

The appointment is next week, and they didn’t see anything major on MRI. My concern is that I went on my NHS app the other day to obtain my sick note as I have been off work due to getting an infection after the biopsy. On health conditions I noted that it now says I have Adenocarcinoma of Prostate, dated from when they phoned me up for the appointment to see the consultant.

I tried calling the urology nurse on Friday when I saw it, but it was a voicemail and have had no call back.

I know I should just wait until Tuesday for my appointment, but I am slightly anxious now. Has anyone else had a similar comment out on their NHS app?

Edited by member 18 Jul 2024 at 14:45  | Reason: Not specified

User
Posted 13 Jul 2024 at 20:27
I can't help you regarding the NHS as I'm in France but it does sound as though they have found something of interest but at a PSA of 4.5 and nothing obvious in the MRI then it looks like they found whatever it is very early and in that respect you have been very fortunate, especially given your family history.

Hold tight until your appointment but it does appear that you are going to be fine even if is PCa.

I have found from others that they are unlikely to discuss their findings over the phone for obvious reasons.

Good luck!

User
Posted 13 Jul 2024 at 21:33

Hello mate.

I'm sorry that you've had to find us, but I'm pleased that you have. Welcome to the forum.

I can't really add anything to what Steve has said. You are bound to feel nervous, we've all been nervous. Your consultation is very soon and you will be told exactly what your biopsy results were. Whatever the results, we'll be here to help you and reassure you.

As you are probably aware Adenocarcinoma of the prostate means prostate cancer, which is very common. The biopsy results will show whether cancer has been detected and if so how 'strong' it is.

I'm on the NHS app now, but wasn't when I was first diagnosed, so I can't comment on why there has been an entry made on your records. IF as you suspect, its because the biopsy found cancer, I think it's completely out of order that you found it without being told first.

As Steve said your PSA levels are relatively low and your MRI results appear to be good. This bodes well, and your enlarged prostate, elevated PSA and frequent urination at night could be due to other non cancerous prostate conditions.

I know its difficult, especically as your dad and uncle had it, but try not to worry. My dad and younger brother had the disease,  so I do understand the added anxiety this can cause.

Please keep us updated.

Best of luck.

Edited by member 13 Jul 2024 at 21:48  | Reason: Additional text

User
Posted 17 Jul 2024 at 18:01
I know that your consultant knows best and that there is also a very strong desire to put off the inevitable but just one note of caution in that the MRI/Biospy/DRE etc is only an estimation of what is really going on and in a few occasions, mine included, the diagnosis was upgraded once the prostate was on the lab table - my 3+4 became 4+5 and some cancer cells had escaped meaning that I had to undergo salvage radiotherapy.

I remember when I received my diagnosis and I did push the urologist to see if waiting was an option and she did not discount it at the time.

The sooner it is treated the better the long term outcome so if you are absolutely sure that AS is the way forward then really keep on top of the tests etc.

Wishing you all the best moving forward!!

User
Posted 13 Jul 2024 at 18:09

Hi,

A brief history of where I’m up to so far:

I’m in my mid 40’s. I went to my GP due to having issues getting up numerous times throughout the night for a pee and some dribbling. He did a PSA test which came back at 4.5.

Went back for a DRE and he said it seemed fine, sent me away and requested a further PSA in a few weeks. That came back at 4.5, so was referred to urology.

Consultant did DRE and said prostate seemed enlarged and sent me for MRI. PSA density came back slightly over at 0.16 so he said I should have biopsy due to strong family history.

I went for the biopsy, then got a call a couple of weeks later to arrange to see Consultant for results. I received a letter from biopsy saying histology results have gone to MDT and appointment made with consultant to discuss results.

The appointment is next week, and they didn’t see anything major on MRI. My concern is that I went on my NHS app the other day to obtain my sick note as I have been off work due to getting an infection after the biopsy. On health conditions I noted that it now says I have Adenocarcinoma of Prostate, dated from when they phoned me up for the appointment to see the consultant.

I tried calling the urology nurse on Friday when I saw it, but it was a voicemail and have had no call back.

I know I should just wait until Tuesday for my appointment, but I am slightly anxious now. Has anyone else had a similar comment out on their NHS app?

Edited by member 18 Jul 2024 at 14:45  | Reason: Not specified

User
Posted 15 Jul 2024 at 07:05

Hi MortyandRick,

As everyone will tell you, the waiting is ALWAYS the worst part of this journey. What I would do is try and channel you energies into thinking of questions to ask at the appointment and write them down. Take someone with you to the appointment if possible and maybe even ask if they mind if you record what is said. You’ll still be in ‘shock’ phase and it’s so easy to forget about questions and answers during the stress of your appointment.

Good luck on Tuesday,

Derek

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User
Posted 13 Jul 2024 at 20:27
I can't help you regarding the NHS as I'm in France but it does sound as though they have found something of interest but at a PSA of 4.5 and nothing obvious in the MRI then it looks like they found whatever it is very early and in that respect you have been very fortunate, especially given your family history.

Hold tight until your appointment but it does appear that you are going to be fine even if is PCa.

I have found from others that they are unlikely to discuss their findings over the phone for obvious reasons.

Good luck!

User
Posted 13 Jul 2024 at 21:33

Hello mate.

I'm sorry that you've had to find us, but I'm pleased that you have. Welcome to the forum.

I can't really add anything to what Steve has said. You are bound to feel nervous, we've all been nervous. Your consultation is very soon and you will be told exactly what your biopsy results were. Whatever the results, we'll be here to help you and reassure you.

As you are probably aware Adenocarcinoma of the prostate means prostate cancer, which is very common. The biopsy results will show whether cancer has been detected and if so how 'strong' it is.

I'm on the NHS app now, but wasn't when I was first diagnosed, so I can't comment on why there has been an entry made on your records. IF as you suspect, its because the biopsy found cancer, I think it's completely out of order that you found it without being told first.

As Steve said your PSA levels are relatively low and your MRI results appear to be good. This bodes well, and your enlarged prostate, elevated PSA and frequent urination at night could be due to other non cancerous prostate conditions.

I know its difficult, especically as your dad and uncle had it, but try not to worry. My dad and younger brother had the disease,  so I do understand the added anxiety this can cause.

Please keep us updated.

Best of luck.

Edited by member 13 Jul 2024 at 21:48  | Reason: Additional text

User
Posted 15 Jul 2024 at 07:05

Hi MortyandRick,

As everyone will tell you, the waiting is ALWAYS the worst part of this journey. What I would do is try and channel you energies into thinking of questions to ask at the appointment and write them down. Take someone with you to the appointment if possible and maybe even ask if they mind if you record what is said. You’ll still be in ‘shock’ phase and it’s so easy to forget about questions and answers during the stress of your appointment.

Good luck on Tuesday,

Derek

User
Posted 16 Jul 2024 at 17:15

Just got back from consultant appointment. He confirmed that I do in fact have Prostate Cancer, and that Gleason score was 3+4, but only just into the 4.

He said given my age and that nothing had shown on MRI, that active surveillance may be best course of action with 3 monthly PSA testing and MRI every 6 months.

I wasn’t keen on the idea of prostatectomy or radiotherapy currently, but the consultant said I will definitely need it, it’s more a case of deciding to do it at right time.

User
Posted 17 Jul 2024 at 14:23

Well that sounds like good news? I would say no point in having treatment before you need it….as long as it’s kept a close eye on.

Good luck!

Derek

User
Posted 17 Jul 2024 at 18:01
I know that your consultant knows best and that there is also a very strong desire to put off the inevitable but just one note of caution in that the MRI/Biospy/DRE etc is only an estimation of what is really going on and in a few occasions, mine included, the diagnosis was upgraded once the prostate was on the lab table - my 3+4 became 4+5 and some cancer cells had escaped meaning that I had to undergo salvage radiotherapy.

I remember when I received my diagnosis and I did push the urologist to see if waiting was an option and she did not discount it at the time.

The sooner it is treated the better the long term outcome so if you are absolutely sure that AS is the way forward then really keep on top of the tests etc.

Wishing you all the best moving forward!!

 
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