Appointment wait times, and consultant results

Hi Andrew, 

Welcome to our club. I can't help you much, but regarding waiting times I would say when I was diagnosed two years ago, about two weeks was about the time between appointments and scans and about two weeks wait for the results. So if they are managing three weeks with covid going on I think they are doing well.

My trust is in Manchester and I was treated at the Christie. I'm happy with my treatment, I don't know how to compare trusts, but I'm sure one of the others will be along soon to help.

p.s. Colwick Chris's reply is regarding a technical problem with the forum, just incase you were confused. 

Edited by member 17 May 2020 at 00:17  | Reason: Add a postscript

The waiting times you quote are normal. If you're seeing those at the moment, that's excellent.

A Transperineal Template biopsy under GA requires theatre time, and that usually takes longer than 3 weeks wait. When they have a date, you will almost certainly be brought in for a pre-op 1-2 weeks beforehand, to check you are OK for a general anesthetic, and don't carry MRSA, and possibly to give you Tamsulosin to start taking a few days before (so you can pee more easily post-operatively).

By the way, here's my account of my template biopsy, and many more in that thread too.

Andrew,

There's a checkbox for a thread which you can tick "Follow this conversation - get email notifications". It's on this edit screen, and maybe elsewhere.

Anyway, how are you doing? Your diagnosis path as far as you had described it, was identical to mine 18 months ago.

Hi Andrew,

I had some similar issues - the diagnostic tests didn't in the consultants' views match up.

My PSA was 57. TRUS found one tiny bit of G3 in one out of 12 cores, which they'd normally ignore.

MRI was T3a, PIRADS 4 - clinically significant cancer likely, but hadn't been found so far. Also it was explained that if a PIRADS 4 doesn't find gleason 4, this casts doubt on the biospy. Bone scan clear, and no suspect lymph nodes on MRI.

Had a template biopsy. This did find more G3 and some G4. However, still some doubt they'd found enough to explain PSA 57.

Booked for Choline PET scan. This didn't happen because it was during the period 18 months ago when no one could make any working isotope. I offered to pay for a PSMA PET scan, but the MDT instead came back with the offer of a full body MRI scan on the NHS, which they claimed was better, so I did that. (I found afterwards that PSMA scans were all booked up for months anyway, due to failure to produce Choline isotope.) Nothing found in the MRI (actually many things found, but nothing related to PCa and nothing else requiring treatment).

Eventually confirmed T3aN0M0. The T3a and the PSA 57 made me high risk.

Radiotherapy recommended. A prostatectomy would highly likely need to be followed by RT, and would probably not be nerve sparing. I picked RT and was referred to a RT specialist centre, Mount Vernon.

Mount Vernon recommended that I follow one of the branches of the PIVOTALboost trial. I was offered to go on the trial, but my onco thought it quite important I was on a specific arm which is not something you can choose on the trial, and so treated me according to that arm of the trial, but not on the trial. This was HT and RT, the RT split 46Gy (23 sessions) external beam to prostate, seminal vesicles, and pelvic lymph nodes (sometimes called whole pelvis or wide beam RT, both wholly misleading), plus 15Gy HDR Brachytherapy to prostate only. No cancer had been found outside the prostate (the T3a was due to bulging), but I was treated on the assumption there were micro-mets in pelvic lymph nodes or seminal vesicles.

I did a couple of other slightly experimental things based on research I read, with the support of my onco and GP. I delayed my radiotherapy to get my pre-treatment PSA down to 0.1, as a couple of papers suggested this could cause better outcomes, or that you could come off HT earlier. I adopted one of the STAMPEDE trial arms of taking Metformin, again without being part of the real trial. There is some correlation with Metformin use reducing recurrence, and evidence it reduces some long term side effects of HT.

I'm 10 months after radical treatment. Only RT side effect remaining is a little rectal bleeding (maybe once a week), and still sensitive to fibre (but nowhere near as sensitive as I was). I will be referred to colorectal to check out the bleeding.

Also still on hormone therapy, probably until sometime next year. This is largely up to me, because of my choice to delay RT to get PSA very low, but my onco will advise. I don't get major side effects from HT, so I'm not looking to stop it quickly, but will probably stick with it for as long as is likely to improve long term outcomes. Sexual function has continued working throughout (one of the reasons I rejected prostatectomy), albeit dulled by temporary loss of libido, but I'm aware I could lose it as a long term side effect of RT anytime up to 5 years out. I do lots of exercise (cyclist, and special gym sessions for PCa patients), which I suspect contributes significantly to getting few side effects from the HT.

Good luck with your treatment, and feel free to ask me anything.

This doesn't apply in every case though, does it - we have had two new (happily short term) members here recently who were allocated PIRADS 5 from their mpMRI but were subsequently given the all clear and signed off by the urology dept when targeted biopsies found no signs of cancer. There isn't a direct correlation between PIRADS 3 and G3, PIRADS 4 and G4, etc. An mpMRI may lead to a PIRADS 5 because the cells are very poorly differentiated (and therefore there is a high chance of elements of G5) or because they can clearly see that the cells have breached the capsule, I think, even though the subsequent biopsy may only find a G3+4 or whatever. That's my understanding of it, anyway. 

With something like 45,000 men diagnosed with PCa each year in the UK, the data and collective expertise and thus the treatment options offered is far more robust than a best guess. Very different if we were talking about a rare cancer where there is little data, such as cancer of the eye or saliva glands, it does start to feel a bit more like quesswork / kitchen sink.

Andrew,
Do feel free to ask here. There's no such thing as a silly question.

I'm guessing you might be referring to some of these:
TRUS = Trans-rectal Ultrasound prostate biopsy. These are being phased out. Indeed COVID has forced many urology departments to abandon them within last two months.
TPLA Trans-perineal local anesthetic prostate biopsy. These are replacing TRUS.
[Transperineal] Template biopsy - a more detailed biopsy to map location of cancer in part or all of the prostate, done in an operating theatre, usually under general anesthetic. (Also partly replaced by LATP.)
PIRADS is a score given by a radiologist for the likelyhood of prostate cancer being present. Likert is a newer almost identical score.
PET scan is a type of scan which can search out prostate cancer. Choline PET scans are the norm on the NHS, and the more sensitive/expensive PSMA PET scan is available privately, but some cancer centres now offer it on the NHS too.
Brachytherapy is a form of radiotherapy, where the radioactive source is put inside the area being treated.

The toolkit Lyn mentions will be good to get you up to speed, but you don't feel you need to wait for that to arrive.