I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

<123>

PSA 33 but no apparent urgency for diagnosis - PSA33,Scans (CT / MRI / Bone scan),Biopsy

User
Posted 08 Apr 2018 at 14:59
Originally Posted by: Online Community Member

Just for the record, I did not misunderstand the situation. It is just as I suspected and a daft way to try to save money at the expense of care quality. I can't see how hillsrob has benefitted at all. Get on to your local MP, mate, this is NOT the way to go!

AC

What is an MP going to do? This company has passed every CQC inspection it has had, and has held the contract for urology services since 2007. I think it might be a bit late for the MP to start campaigning against it :-/

Bollinge, Rob clearly stated that the results go to a urologist for triage - the GP will simply be passing on a message, good or bad.

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

User
Posted 08 Apr 2018 at 17:00
Originally Posted by: Online Community Member

Bollinge, Rob clearly stated that the results go to a urologist for triage - the GP will simply be passing on a message, good or bad.

Matron, when I had my ‘bad” news Big C meeting with the consultant urologist, there were two others in the room, I assumed they were the multi-disciplinary team. Wrong, there was a “Mc Millanish” nurse and a.n. other, someone doing a survey. At least I had an audience with a consultant whom I had never set eyes on before.

How can it be that if the guy has a problem, he is not seen by a specialist? I hope it’s for a good reason!

Edited by member 08 Apr 2018 at 17:01  | Reason: Not specified

User
Posted 08 Apr 2018 at 17:08

Because that is how the contract has been set up in that area - the MRI is done in the community and the results are triaged by a duty urologist - if they believe there is a problem, they tell the GP to tell him he needs to come back for a TRUS biopsy. The biopsy is also managed by the private company, it seems. If the MRI and biopsy results indicate cancer, presumably the company tells the GP to refer the man to hospital for further assessment. At that point, he is probably put onto the books of a consultant.

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

User
Posted 10 Apr 2018 at 20:03

Yesterday (Monday 9th April 2018) I called my GP surgery and explained to the receptionist that my MRI scan report had been with GP Care (NHS) Ltd since Thursday 5th April and they were now awaiting triage by a Urologist. 

I asked if it would be possible for my GP to enquire about the content of the radiology report. Within hours I received a message from my GP who proposed downloading the results from the database and giving me his non-expert interpretation over the phone. I agreed to this and later in the day he called me and explained that the scan revealed an 'abnormality' on one side of my prostate. I asked if there was any evidence of metastasis and he responded that my bones and lymph nodes appeared to be clear but there was a note concerning a cyst on one of my kidneys. Clearly this will also need further investigation along with the obvious next steps regarding my prostate. 

I also asked if he could tell from the results if my scan had been a multi-parametric MRI. He said he couldn't tell from the data. 

He said he would contact GP Care (NHS) Ltd to get an immediate update and today called me back to say that I have now been referred to North Bristol Trust (Southmead) for an urgent biopsy under anaesthetic and that I would be contacted by Southmead directly for an appointment. I'm assuming that 'under anaesthetic' implies a Template Biopsy using the data from my MRI scan.  

 So it's now 48 days since I visited my GP to ask for a PSA test.  I still haven't seen a Urologist and who knows I may not see one for several weeks yet. At least the order of my treatment has been as I would prefer i.e. MRI scan followed by template biopsy.    

Edited by member 10 Apr 2018 at 20:06  | Reason: Not specified

User
Posted 10 Apr 2018 at 20:41
Hi Rob I can understand your frustration at the timescale involved in getting a diagnosis. The good news at least is that hopefully things will speed up and you will get the answers you need. Your biopsy is almost certainly a Template one which should be more accurate.You are definitely better off having the MRI first before the biopsy.

It took my husband 4 months from GP referral to the district hospital ( who no longer do Prostate cancer treatment just the tests) to be diagnosed. At least once he was referred to Leicester he only had to wait another 5-6 weeks for his operation.

I hope you do not have to wait much longer.

Best Wishes

Ann

User
Posted 10 Apr 2018 at 20:43

So good news is if it is cancer it is only on one side and you are getting the biopsy you wanted from the hospital urology team rather than a TRUS in the community. I assume that there will now be no need for GP Care to be involved any further. More waiting for you but at least you know the outcome isn't going to be too bad.

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

User
Posted 11 Apr 2018 at 14:30

The only comfort you can take from this farrago is that you are at least having a “gold standard” template biopsy guided by the images of your MRI scan, and that we are constantly told “most prostate cancers are slow growing”, so I doubt there will be much difference in your outcome between 42 days, 90 days, 120 days, etc.

I may have had my cancer for up to seven years or more.

They told me they found an “abnormality” on my MRI, but I had already twigged I had cancer. Fingers crossed you haven’t got cancer at all. You’ve got the kidney cyst as a bonus!

Moral of the story: Don’t get old.

Edited by member 11 Apr 2018 at 14:36  | Reason: Not specified

User
Posted 13 Apr 2018 at 08:46

Thanks again everyone for your concern and valuable inputs. I'm feeling a little more relaxed now waiting for an appointment. The calm before the storm no doubt. I did a little research to see what a kidney cyst might mean. If it's benign it could be partially the cause of my high blood pressure for the last 20 years. https://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

User
Posted 14 Apr 2018 at 08:17

I now have an outpatient appointment on 24th April 2018 with the Urology (Bristol Urological Institute) service. The letter says I will be seen by a (named) Urologist or a member of the clinical team.

There is no mention of preparing for a biopsy at this stage but hopefully that will follow soon after the consultation.  

User
Posted 25 Apr 2018 at 14:43

 

Yesterday 24th April 2018 I attended my appointment at the Bristol Urological Institute. My sister came with me for support and asked some questions and took notes.

The Urologist went through my MRI results with us in some detail and explained that the abnormality on the left anterior side of my prostate is almost certainly a cancerous tumour. It was very close to one of the seminal vesicles and probably the cause of the episodes of haematospermia that I had experienced. (blood in semen)

For the record the Urologist told me that I did indeed have an multiparametricMRI scan.

Because of the position of the abnormality it was judged that a TRUS biopsy targeting that side of the prostate was a better proposition than a template biopsy. We asked about the risk of infection but the Urologist said that this was balanced by the general anaesthetic risks and that a TRUS biopsy could be offered sooner than a template biopsy.

We had some discussion about the treatment options and it seems likely that the options available to me will be external radiation or radical prostatectomy. As the tumour is on one side it may be possible to aim for some nerve sparing on the unaffected side. Timescales appear to be 2 weeks for the biopsy, 2 weeks for the results and possibly 6 weeks for surgery or other treatment.

While there, I was sent for an immediate ultrasonic scan of my kidneys and the results were that there were two aqueous cysts but these were quite common but harmless and no further treatment for them was required.

I was handed over to a specialist consultant nurse who explain some of the details about the next stages. As I was being handed over my sister noted the term T3 being used. We later discovered that this relates to the tumour possibly having broken out of the prostatic capsule. I gave permission to be contacted by telephone regarding progress and results.

So at least I now feel that I'm in the main treatment loop. The general feedback was that the delays I have experienced so far should not impact the outcome as in most cases prostate cancer progresses quite slowly. I wish I felt more confident about that.

Since first seeing my GP for the PSA test I have been experiencing some lower abdominal discomfort and mild back ache particularly in the mornings. After doing some internet research on the function of and potential problems relating to seminal vesicles, it seems that infections in these organs can give rise to similar symptoms.  

Edited by member 25 Apr 2018 at 14:50  | Reason: Not specified

User
Posted 25 Apr 2018 at 15:51
Thank you for posting this. My husband and I are just beginning our journey. First PSA high followed by an MRI that has showed something. Not sure yet but my husband now is having a biopsy tomorrow. We have yet to understand sooo much and still have to master all the abbreviations etc. I wish you all the good wishes possible on your continued journey too
User
Posted 26 Apr 2018 at 07:23

Hi Pjgrinter,

I hope you find the support community on here as helpful as I have. I too was not familiar with all the terminology and am still learning fast. For me I find it helpful to understand every step of the process but others may prefer to leave everything to the professionals.

One good bit of news for your husband is that his treatment seems to have been handled in the right order i.e. MRI scan before biopsy. The thinking behind this is that the MRI scan allows the biopsy to be more targeted as they already know in what area to take the samples.

Please feel free to add to my thread with your experiences or start a new one and I will try to contribute where I can. There are lots of nice people on here who have been a great support to me in these early days. I wish you and your husband all the very best as you join this community that of course none of us really want to be in.  

 

User
Posted 03 May 2018 at 16:09
This week I was offered a TRUS biopsy on 24th May. I was again stunned at just how slowly the wheels of the NHS turn and called back to ask if there was any way that the appointment could be brought forward given that I got my PSA = 33 result on the 26th February and my MRI scan suggested a T3B diagnosis.

I just got a call to say that they had received a cancellation so I now have an appointment for the TRUS biopsy next week on Thursday 10th May at 3pm. I also asked how soon I might get the result and they said it should be about one week after.

User
Posted 03 May 2018 at 17:16

I am so cross on your behalf - the lesson for other men is not to relocate to the South West :-(

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

User
Posted 03 May 2018 at 18:15
Thanks for your ongoing support Lyne I really appreciate it.

Edited by member 03 May 2018 at 19:07  | Reason: Not specified

User
Posted 11 May 2018 at 09:31

Wednesday 9th May 2018 (74 days after receiving my PSA 33.3 result) I visited my GP. I had originally made the appointment to complain again about the very long delays I have been experiencing and to discuss the possibility of having my prostate cancer diagnosis completed privately.  Since being offered a cancellation on 10th May for a TRUS biopsy, it was agreed to continue with the NHS diagnosis process.

Coincidentally in the post on the same day came a copy of a letter to my GP from The Bristol Urology Institute confirming my diagnosis so far.

Diagnoses:

Likely prostate cancer. PSA 33.3. MRI abnormality in left peripheral zone, PI-RADS 5. Simple cyst on right kidney.

Management:

Ultrasound confirmed the simple kidney cyst needs no further management.

Given that the prostate abnormality is in the peripheral zone it should be easy to target with a transrectal ultrasound-guided biopsy.  

Yesterday 10th May 2018 I had my TRUS biopsy at Bristol Urology Institute (Southmead). Using information from the mpMRI Scan results, 6 samples were taken from the apparently unaffected right lobe of my prostate and 6 samples from the left where the abnormality has been identified.

The procedure went well and apart from some discomfort once the local anaesthetic started to wear off I'm feeling fine with no signs of infection. Just a little blood in my urine and expected passing of blood clots from the rectum. 

I was advised that the results will be available in 2 to 3 weeks.  

I have to say that I have nothing but praise for the way that I have been treated by the doctors and nurses at the Bristol Urology Institute (Southmead). It's just the long delays between the process steps that I find very worrying.  

   

    

 

User
Posted 19 May 2018 at 09:05

I now have an appointment set for Monday 21st May 2018 to get the results of my TRUS biopsy.

I know that the multi-discipline team meet every Wednesday to review all cases and I got my appointment by phone on Thursday. My appointment is with one of the main prostatectomy surgeons so am preparing for that to be one of, if not the only course of treatment offered.

My brother is kindly going to the meeting with me and will make notes and prompt me if I forget to ask any questions that I will prepare in advance to ask.

I'll update this thread soon after the meeting.  

User
Posted 22 May 2018 at 15:52

21st May 2018: I had a consultation with a specialist nurse from the Bristol Urology Institute to discuss the results of my TRUS biopsy.

Biopsy Results: Gleeson score 3 + 4 = 7.  This is about as good a result as I could expect at this stage given the MRI scan findings of an apparently cancerous tumour on the left side of my prostate close to the left seminal vesicle.  The MRI scan report suggested staging as T3b N0 M0.

At the meeting two possible treatment options were discussed both with the aim of a cure: Radical prostatectomy or external beam radiation.  Before prostatectomy could be offered I now need to undergo a complete body bone CAT scan. If this comes back clear then prostatectomy will be an option. If not then only radiation based treatment will be offered. The latter might include hormone treatment and or chemotherapy.

So I'm now waiting for an appointment for a CAT scan.  I feel better knowing my diagnosis and that there is some hope of a cure. I realise of course that any treatment options come with significant side affects that will inevitably impact the quality of my remaining life. 

    

User
Posted 22 May 2018 at 18:31
Hillsrob, I'm pleased you now have a better picture of what stage you're at. The waiting is so, so hard. We have another week before we find out the results of my dad's bone and MRI scan. Wishing you every luck with your treatment. Take care x
User
Posted 24 May 2018 at 12:26

Thanks for your good wishes lisabun. I hope things go well for your Dad too. 

I now have an appointment on the 31st May 2018 for a NM (Nuclear Medicine) full body Bone scan and then a consultation on 5th June 2018 with a urologist. 

I'll watch out for your posts and try to contribute where I can. 

 

 
Forum Jump  
<123>
©2025 Prostate Cancer UK