An Unknown Journey

Hello Dave and welcome to the site

Naturally you are feeling anxious. Whatever is causing your current problem we do understand because to some extent we have all been there and know that feeling.

Waiting for any result is nerve racking.

Whatever the cause, you have been dealt with extremely quickly so even if the news isn't the best (and no reason to suppose anything nasty at this stage) then you are well ahead of the game.
Promptness by your GP has to be commended, judged by some of the laggardly attitudes reported on here.

As the doctor did a urine test and gave you ciprofloxacin I assume she suspected an infection. Did she ever confirm that you had had an infection?

Anyway, once you get the result we'll be able to offer more help and advice and in the meantime I hope somebody will be along to reassure you

Edited by member 10 Feb 2018 at 15:21  | Reason: Not specified

Hi Dave,

Sorry you find yourself here, but it sounds like you are getting excellent treatment.

Base PSA levels increase with age, so posting your age will help members give advice.

My PSA was 9.6 at 61 years

I remember the waiting for results being an anxious time and I displaced this as much as I could by getting information about PCa so I understood a bit more and was better prepared.

The 'Information' Tab at the top of the page takes you to some useful pages. The 'Toolkit' has lots of useful information, and the Specialist Nurses on the telephone number are really helpful and knowledgeable.

Good luck and keep posting.

G

That is a bit unfortunate isn’t it as it is reasonable to assume that they found something of concern but you are left in a wilderness of suspecting but not knowing.

When John had his biopsy, the letter inviting him for his scans arrived before the appointment to see the urologist so we knew it was cancer before we even walked in the room. The urologist was very apologetic but sometimes the appointment departments are too efficient (is that possible?)

Where have they referred you on to?

No, I was trying to be polite :-/

Hi Dave,

Other reasons could be an infection or enlarged prostate BHP [Benign prostatic hyperplasia, or BPH, involves enlargement of the prostate gland. The prostate enlargement in benign prostatic hyperplasia is not malignant (not cancer). ]

Your PSA level at 4 is quite low. If you were 60 yr old the PSA of 4 would be borderline treatment or not. If it is PCa it is likely to be low grade.

But as you say the DRE was firm. I understand a symptom of PCa is an irregular surface on DRE.

Waiting for the results is an anxious time, try to keep your mind off it, keep distracted, it's not going to change the results.

Easier said than done, I had a 50x50mm growth found on the Adrenal Gland a day ago by ultrasound. My PSA results were in last week but they haven't forwarded them to me, but my excellent GP took bloods 3 weeks earlier so hopefully it's unlikely to be related to PCa.

Hang in there, G   

hi dave I'm new to the community on here , but read your profile and am being reffered to st lukes Bradford after I get my m.r.I scan results next week just wanted to know what you thought of treatment from st lukes ? as I live in Huddersfield , and how are things with you now many thanks dave

You should insist on a 3T resolution mpMRI scan and be prepared to travel to get one, and if you do end up having to have another biopsy, make sure you ask for a much more accurate template biopsy rather than another TRUS. Those are particularly pertinent in low Gleason scores such as yours. 

You should also read the post today by Old Barry, ’Challenging the Doctor’.

Best of luck anyway.

Cheers, John.

Edited by member 17 Feb 2019 at 14:21  | Reason: Not specified

Strangely, no-one seems to be able to tell me what resolution my diagnostic scan was, although I seem to recall a ’GE 3T’ badge on the MRI machine as I was going into the tube. I might be mistaken.

Tommy the Tumour at 15mm would have been picked up at whatever resolution, as he would have been if I had had a TRUS biopsy.

All of the diagnostics were done in Coventry, and were nothing to do with Professor Whocannotbenamed here, who only carried out the prostatectomy. He didn't even look at the DVD of my scan when he took me on, just my written case notes. Disappointed my film didn't get an Oscar nomination for next week though.

Cheers, John.

Edited by member 18 Feb 2019 at 01:42  | Reason: Not specified

I had my appointment with my Urologist today. He was concerned that I had not seen him for nearly 8 months and I explained it was certainly not of my making and that my appointments had been cancelled even though I had informed them that they were of high importance. He blamed the problem on the Appointments Centre.

I was given a DRE and he said that the prostate felt the same (a small amount of firmness) as the previous DRE, 12 months ago.

He said that I should now have another MRI and TRUS biopsy. I asked if I could have the better mpMRI as recommended by NICE but he said that I should have the same scan as before so that a like for like comparison could be made. I did remind him that my first and only MRI had shown nothing.

I asked if I had to have another biopsy and was told that the Active Surveillance regime required one and that if I declined one then I would be removed from Active Surveillance and moved to Watchful Waiting which would just use PSA tests as markers for any disease progression.

I can’t say that I came away from the consultation reassured that I was being offered the best diagnosis methods available and I would be grateful if someone can advise whether the advice and information I was given today was correct.

Thanks in advance.

It was a bit heavy handed for the Urologist to say you'd be put onto Watchful Waiting if you refused the MRI considering your psa has reached 7.  Although if they've offered diagnostic treatment and you're confident it will happen in a reasonable timescale it would be better to take it, unless you can guarantee better treatment elsewhere in similar timescales.

I've found it can get a little messier when you attend a hospital that isn't your local one.  My GP can't see my results without looking through the scanned letters from the other hospital which he doesn't do.  Otherwise though I'm happier at the other hospital where the surgical team are based and they have a big radiology centre.  Although my local hospital has a very helpful Macmillan service which the other one doesn't seem to have or at least I haven't been offered it after the op.

The 4 months delay in your appointment isn't good, no doubt appointments will blame urology but there is also an onus on the patient to keep pressing.  I'm not sure how true it is but I read that patients who complain, about their GPs, actually get better treatment, although I've always worried, and apparently so do others, it would be the opposite.

3+3 isn't too bad a place to be although you can never guarantee that the biopsy got the worse bit and you don't know where it's located.   I recall reading in one of Lyn's posts that MRI under psa 10 is unreliable, although in my case they said I had a 13mm tumour with a psa fractionally under 10.  Presumably yours is small if they can't see it at all and they do say that many men have latent cases so you always wonder if you made the right call.   All the best  Peter

I've just found this that seems to state that my NHS Trust can access mpMRI scans.

https://www.npca.org.uk/provider-results/trust/calderdale-and-huddersfield-nhs-foundation-trust/#services

I'm curious as to why a Urologist would not refer me for an mpMRI when the option is available and is the recommendation of NICE. Is it likely to be a cost reason?

My recent PCa history is that on the 22nd Feb my urologist did a DRE and found no chance since the previous one 12 months ago. My PSA spiked to 7 at this time but dropped to 5.5 by March 8th.
Original biopsy in Feb 2018 of Gleeson 3+3 6 - Low to intermediate risk T2a left. Confined.

I have had no symptoms whatsoever.

At the end of last year I started getting sciatica and have been to see a chiropractor who has managed to help however the problem is still there.
My GP therefore sent me for an MRI scan on 7th June and I went to see him yesterday as he had received the radiologists report.

Various things going on with my spine which I am to be referred to a physiotherapist to hopefully deal with.

There was however one more thing. To quote the report
"A small focus of low T1 and T2 signal in the right iliac bone is likely to be sclerotic, the differential diagnosis for which includes metastatic prostate cancer"

"Impression Probable/possible metastatis in right bone"

I am due to have a mpMRI on Saturday anyway and my GP told me to ask the MRI team to cover the pelvis with this scan. He is also going to book me in for a bone scan. Today I am having a PSA and Calcium blood test.

My GP did try and reassure me that taking into account my recent history of low PSA and no change in DRE result that the likelihood is that the what the MRI picked up is not cancer. He said it could it possibly be some arthritis (there is some in the my spine) or that it could be an error in the scanning process.

Since my appointment I have been doing some research risks of spread of PCa to the bones and have discovered from various research studies that the chance of having bone metastasis with a PSA level under 10 is extremely remote.

Obviously I'll have a better idea of what's going on after my mpMRI scan and also the bone scan. It would be useful and very much appreciated if someone can perhaps advise on this concern though

A little background information.
Three months ago my wife (she's 51) was diagnosed with breast cancer. She's had a lumpectomy and 15 lymph nodes removed. She's now on Tamoxifen with radiotherapy starting in 5 weeks.
What now with my latest scare it really is grinding me and us down as it seems that our lives are consumed with hospital and doctor visits and treatment. I know we are lucky that we have such a wonderful health service to deal with these matters but you do start to wonder when the bad news will end and you can get on with a normal life.

Edited by member 18 Jun 2019 at 11:15  | Reason: Not specified

No. The hospital that I was attending didn't have access to an mpMRI so it was just a conventional MRI that didn't show any sign of PCa. That is why I asked to be transferred over to St James's, Leeds, where they have that facility.

Yes, it was a rectal TRUS. 1 out of 10 cores showing 5%.

So I had my bone scan during Friday afternoon.

Monday evening at 8.30pm I had a phone call from my GP to tell me that he received the results and there was no sign of any bone metastasis. He knew that I was obviously worried so wanted to pass on the good news as soon as he could. That is absolutely fantastic service and I am so lucky to have him as my GP.