Mri and bone scan results

Thank you 

That's quick for nhs ,yours is the quickest I have seen ,mine is the slowest ,lottery 

I had my results and appointment with Urology bang on 3 weeks from the day of my biopsy. All of my appointments from the first appointment with my GP who said my PSA was high up to this day have been phone calls with some letters as a follow on. 

Best wishes 

Michael 

They've been good to be fair with the results a week to ten days is quicker than I expected. 

Regards 

Peter

Hi there! My husband had his MRI (originally thinking he had a bladder problem as his only symptom was similar to having a mild UTI which antibiotics hadn't cleared up) and he was due to have a bladder biopsy but 4 days after the MRI he was contacted by the urologist who explained that the problem was probably prostate cancer and possibly it had spread into his pelvis. His PSA was 39 so a bit like your partner but we were told that it was often MUCH higher.

The reassuring bit was that John was immediately put on hormone medication even though he still needed to have a biopsy to confirm that it's cancer as this would stop it in its tracks immediately. Apart from any side effects from the medication it wouldn't do any harm if it wasn't needed when all the results came in. He had his biopsy yesterday and had a Prostap injection a few days ago so now we wait for the results in 5-6 weeks apparently, but knowing that the hormones are keeping things static, shrinking any tumours whether in his prostate or having spread anywhere else (we hope not of course).

In your case I would expect something similar to happen and as soon as there is any suspicion of prostate cancer from the tests that he would be prescribed the hormones. Every time I start to panic about living with a cancer diagnosis I remind myself that at the moment it's being held captive by these hormones! As for side effects, so far mild nausea which rather spoilt Christmas but is now controlled by an anti-sickness tablet, and probably more tiredness than usual. John spent NYE putting together some bedroom furniture and as it was going well he cracked on with it until it was finished and then tried to stay up til midnight. Big mistake! He was so tired he kept nodding off despite trying to keep his eyes open and we have learnt to pace ourselves in future.

Anyway, sorry to go on at such length. I do like the sound of my own keyboard and do keep in touch either on the forum or by PM if you'd like some moral support.

Best wishes, Alison

Good Morning Alison

A cracking post and great support, so thank you.

Sadly not all urology departments start Hormone Therapy from day 1 - many wait until the full diagnostics have been done and then it's sorted out at the MDT meeting even later (sometimes 6 months from the first PSA Test showing a possible cancer).

I am a "lucky boy", my first PSA test was 182 and my urologist started me on HT from day 3 in hospital - I am also a Gleason 9 so very aggressive - and thanks to him it looks like even with the high PSA I have completed a 3 year "curative pathway" with my last PSA being 0.29. Time will only tell if his prompt action has worked.

At this time I am now under The Christie PEASS (Prostate Easy Access Self Service) scheme where every 6 months I book a PSA Test and complete an online set of questions about my health. If things go well this is for 5 years and lifelong thereafter - next PSA due mid February.

My favorite quote is "que sera sera"  (it wouldn't go down well as my strapline) but that's how I feel after 3 years.

Sadly there is no uniform treatment plan in the UK and each Urology department works to it's own "guidelines".

Best wishes - Brian.

Hello Brian

May I have the temerity to slightly correct your reply to Ally?!!

NICE ( National Institute for Health and Care  Excellence) evidence- based guidelines are provided for all ( or, at least most )secondary care, including prostate cancer. 

The Government also has targets for treatment times for cancer care.

of course, not everybody slots neatly into categories and not all hospitals have the capacity or resources to achieve perfection in their offer but I have used these guidelines and timescales to challenge suboptimal care!

My frustration with NICE guidelines is that they can take ages before approving treatments ( eg the Space Oar to protect the bowel during RT for prostate cancer  is still not approved for NHS provision as far as I know). Similarly, some treatments are not approved due to costs v benefits calculations. 

Hth

You are spot on Brian mri scan confirmed PC March 18th 24 then two weeks later had bone scan which came back clear ,two weeks after this turned up for biopsy where nurse told me results would take 5 weeks which was eventually eight ,low and behold he then asks for pet scan which delayed another 10 days ,but thankfully this found PC bone met .

But I was all pretty ignorant to all this and took advice of not googling anything .if I had I would have known the the diagnosis the urologist gave me was incorrect. 

My advice to anyone is Google everything up front ,if I had I would have certainly asked to be put on HT sooner 

Hello Worriedwife 

No problem, and a Happy New year to you. The more contributions to a thread the more accurate they become so thank you.

I think my reply was posted on the basis of working on the Community over the last 16 months as a Community Champion and my personal experiences on my 3 year journey. I am aware of the NICE/ Government Guidelines, in fact I put them in a post a couple of days ago - I just wish that every Health Authority would work to them.

I am quite happy to point Community members in the direction of PALS (or the Scottish PASS) when they do have delays in their treatment.

Off the Community I have been working with a group of other cancer patients and a team from Macmillan on a project called "Lived Experience" which we hope will go live later this year where we tell of delays in cancer treatment (not just Prostate) and how to advocate for yourself on your personal journey.

Best wishes - Brian.

Hello Mal CG 

Mal CG said:

But I was all pretty ignorant to all this and took advice of not googling anything .if I had I would have known the the diagnosis the urologist gave me was incorrect. 

My advice to anyone is Google everything up front ,if I had I would have certainly asked to be put on HT sooner 

I am a great advocate of NOT using Dr Google as there is plenty of miss or incorrect information there - yes there is some great information too, but sometimes you only get what you ask for - that's why we can't trust AI or Chat GPG.

As a Community Champion I can only advise "Trusted Sources" for information, Macmillan, Prostate Cancer UK and of course debate on the Community.

Best wishes - Brian.