Me as well

Cheers,

Chris

Well, I had my TP biopsy under local anaesthetic  earlier today at Addenbrookes and found the procedure to be much better than I expected. Did not really experience any pain, though being chatted to by a young attractive female doctor during the procedure might have helped as it kept my mind off what was going on. The consultant, who was excellent,  told me when a sample was going to be taken (saying  "small prick now": just as well I knew he was not talking about my manhood!), with the whole procedure taking about an hour. Obviously, some bleeding and some blood in my urine but apart from that nothing else. I should be told the results of my biopsy in around 2 weeks. Interestingly enough, I was told that if surgery was necessary, I could have the operation within 2 weeks. So no waiting list. 

The consultant also told me that 1 in 5 men over 40 have prostate cancer, that most men of my age (63) have it and all men over 80 have it.

I was not aware that some hospitals were now doing the Transperineal Template Biopsy using deep sedation instead of GA but I found this out personally this week when I experienced this first hand https://community.prostatecanceruk.org/posts/t27361-Changes-to-Template-Biopsy

The medical people usually  don't want to give a final diagnosis until all the tests have been done and scans studied.  It can be a frustrating wait but can make sense as you get a more comprehensively considered opinion.  Back in 2007 I was told my staging was T2A and surgery was a most likely option.  However, this was before the MRI, following which my staging was upgraded to T3A.  I remember saying at the time I wish they had waited and given me my diagnosis after the MRI as on the preliminary assessment I was prepared to have surgery but  after this changed to T3A following the MRI, surgery was not recommended.  Nowadays the MRI usually precedes biopsy,  so that is another thing that has changed over time.

Lets see what treatment options you are offered.

Edited by member 10 Jun 2021 at 17:05  | Reason: to highlight link

Well, I have just had my telephone call from the Surgeon/consultant and thought I ought to post what was said before I forget what was said.

First of all, Lyn was correct in that the letter I got detailing the numbers against various parts of my prostate that were sampled were indeed the core samples taken. When I asked why underneath those numbers was the statement " The study was performed and the findings are summarised above"  no comment was made. I pushed the point and suggested it would have been better if the statement had said and the core samples taken in each are as above, but, again, elicited no response.

All of the samples taken were graded 1 & 2 (see my earlier message re what that actually means) and it appears that Addenbrookes no longer use the Gleason score ( 3 plus 3 = 6 etc). So, based on the core samples, my prostate cancer is likely not to grow or only grow very slowly. The surgeon advised that  based on my cancer grading only 5% of men with my grading would over 15 years gain a survival benefit by taking action at this time i.e. 95 % of men would still be alive, and possibly have died of something else, if no action was taken. So, for me, a good result.

Whilst typing out this message, I was contacted by the specialist nurse assigned to my case, who introduced herself and discussed what the results meant for me. She will send me some paperwork today and then phone me again on Friday to discuss the matter further. The view of the surgeon and the specialist nurse is that active surveillance in the short term might be best.

Edited by member 16 Jun 2021 at 10:39  | Reason: Not specified

Thanks, Dave ,for your response.

You are correct the consultant's figures were lifted from the website you mentioned and I used it myself just to clarify the various scenarios. In my case it suggested I could, potentially, gain another 3 years of life by having surgery. But, with medical science advancing at the rate it is, the outcome could, in the near future, be even better by doing nothing.  To misquote from Dirty Harry, " Do you feel lucky, Punk? Well, do you?  

Thanks, Chris, for your comments.

Reading your profile suggests that you have been on a roller coaster and though your initial results were not quite as "good" as mine, I wonder whether with hindsight you might have done things differently?

Further Update

I  have just been advised by Addenbrookes that my biopsy (earlier message refers) has been booked in for next Thursday (16/09). They don't hang about at Addenbrookes, I am pleased to say.

There have been guys here who have had FIVE TRUS procedures before a definitive diagnosis via a transperineal biopsy! I know three guys personally, who had an inconclusive TRUS and had to have a proper one later.

I don’t suppose your test will give you the ‘all clear’, but I hope your results will give you some low figures.

Cheers, John.

Hi Ivan,

My O/H was originally diagnosed with advanced PCa T3a N1 M1b. We got a 2nd opinion and then had a PSMA pet scan which confirmed no bone mets, so changed things a lot for us. For T3a N1….RT and HT would be mainly recommended but we have decided to opt for RARP and they will take the affected nodes too. He did start HT and he is likely to need ART but he really feels like he wants to get it out and then we’ll deal with whatever comes next.

It’s such a difficult decision and you never really know if you’re making the right one, but there isn’t right or wrong (which many have said on this forum too) we just went with our gut and have felt much better after the decision was made.

We’re now just waiting for an NHS referral out of our area….which is proving difficult! So may just have to pay private in the end. 

Wishing you the best of luck with your decision and future treatment.

Thanks, Jeremys, for your comment

I have indeed read both your thread and that of TechGuy's and have found both useful.

I am a little older than you at 63, but am still young enough, I think, to put up with the downside/inconvenience of having surgery. It will be a right pain (hopefully, metaphorically speaking), but, needs must and all that and I will approach the whole thing with a stiff upper lip (probably the only thing that will be after the surgery!).

Ivan

Ivan

Update

For the sake of completeness (and so I have an easily accessible record), I have posted below part of the latest letter I have received from my surgeon:

Hope things progress well for you.

Although I think it was a bit harsh of matron to suggest that the leaking was your fault - at this early stage, it has absolutely nothing to do with your pelvic floor and everything to do with the major op you just had!

Congratulations on your interesting development and what a relief. Wishing you all the best for a speedy recovery and a Happy new year

Thanks Jeremys and yes a relief.I did expect some leakage after the catheter was removed but did not expect to be totally incontinent- which is what it felt like. When I regained control of my bladder after 8 hours or so it was almost like a button had been pushed and reset the bladder continence level.

A Happy New Year to you too

Ivan

Brilliant news Ivan.

Sounds like everything has gone really well and you are certainly on the right track now. Rob obviously the same timeline and is also doing really well…it’s been so much better than we expected.

Best of luck for your PSA test. Rob has his on the 16th…he still has the hormones in his system though so won’t give a true reading at the moment. Every 3 months it is for him at the mo.

Elaine 

Great news on the histology Ivan. Very pleased for you

I was not going to update my conversation page just my profile but thought it might be useful for those that have and are being treated at Addenbrookes if I commented on my latest PSA test result. I had the test yesterday ( at the drive through on Newmarket Road) and, as usual, got the result sent to me within a few hours of the aforementioned test. My previous 2 quarterly tests were complexed PSA tested and came out at less than 0.04 ug/L. The latest test records a Total PSA figure of less than 0.10 ug/L and was sent with the following comment:

" Complexed PSA no longer available-total PSA results will not be reported below 0.1 ug/L. Normal range 0.00-2.99 ug/L."

I have a telephone meeting with the consultant scheduled for 05/10 and will ask him then why the testing criteria has changed. I assume it is because my surgery was nearly 10 months ago and that because the last 2 quarterly tests were less than 0.04 ug/L it is now deemed not necessary to test below 0.10 ug/L.  

So, Addenbrooke Prostate cancer patients, read the comments sent with your PSA results in case your reading is higher than you expected.

Ivan

Indeed, that may well be the case. In the past Addenbrookes only tested to 0.04 mg/L on the basis that there was no point testing any lower  as  even without a prostate and no cancer the test could still record low levels of PSA.

It will be interesting to see whether the consultant at my phone consultation on 05/10 confirms that they have been swayed by the BAUS findings. 

Ivan