Thought we were getting biopsy results but now rather confused!

Hi Ally52

The situation is certainly not as clear as it should be.  I can't really directly address all of your questions, but will make a couple of comments in case they are of any help. 

1. As far as I am aware, the Gleason score (in your case 4+5) can only come from the post-biopsy histopathology  report.  In my case, I was fortunate enough to receive a copy of the complete report, which was particularly useful in my borderline situation, but I think that in your case it would be less useful.  I received the report in hard copy form direct from the cancer specialist nurse who I saw immediately after seeing the consultant urologist.  The consultant's letter to my GP subsequently appeared in the NHS app, but the report did not.   

2. Can PC be staged with accuracy just from an MRI?  As far as I am aware, the accuracy is limited, so the staging is provisional, and it is intended as a 'best endeavours' guide.  In my particular case, my post-MRI provisional staging was T3 and my post-biopsy staging was T2.  

It would probably be helpful if you could get some clarity on what the MDT sees as the option(s), and the rationale for their recommended way forward.   Assuming of course that there is more than one option, which may not in fact be the case.

Best wishes, Peroni.   

Thanks Peroni - since posting, in a flurry of confusion, John has had a call booking him in for an 'urgent bone scan' on 17/2 which makes sense in our limited understanding, and then he had a return call from the MacMillan nurse who was actually in the next room when we were in the urology department so we could have seen her there face to face, but we were told there were no MacMillan nurses there today  and she confirmed that the biopsy results were there which is why there had been the MDT meeting already. John asked her if she could send the results to us but she said it wouldn't be helpful as it was full of medical jargon but was happy to confirm that the 'guesstimate' from the MRI results had been confirmed by the biopsy as Gleason 4+5 and then T4 N0 M1b  which thanks to this website and forum is understandable to us. So we now know the way ahead and what we are facing. The bone scan might present us with more worrying details but they can be offset by the fact John has been on his HT for about 6 or 7 weeks now. The new PSA number will hopefully be reassuring too. Onwards and upwards!!!

Looks like you are now on more solid ground.  The most important point is that things are in progress - MRI and biopsy done, already on HT, bone scan imminent, and oncologist appt pending. 

Not sure if a new PSA reading is going to add much if anything at this time, but perhaps other, better informed, readers can add their insight.

Anyway best of luck! 

Re the PSA test, that was me panicking about how we could be sure that the HT was working?! I think the doctor wanted to do something to calm me down!

Hello Alison (Ally52) 

Well to be honest that's a rather shambolic way to deal with the results of a biopsy and an MDT meeting if you don't mind me saying so by your NHS trust.

We know now Gleason 9 (4 + 5) and T4N0M1B - so it's aggressive. Why have they not done the bone scan earlier? And how long are you looking at before your oncology appointment?

The good news is he's been on HT as you say for 6/7 weeks so that should stop the blighters in their tracks.

The latest and best treatment for a diagnosis like John's is triplet therapy - this is pretty new but works well but for best results needs starting in the first 12 weeks of treatment - link here:

Prostate Cancer UK - Triplet Therapy.

Now I am not medically trained and can't give advice on treatments directly BUT in your shoes I would be chasing up the oncology department - asking for an early appointment as waiting isn't really an option here.

Come back to me if you need help in chasing up the oncology appointment.

I hope this helps, remember this is my opinion and not Macmillan advice.

Best wishes - Brian.

Hi Brian - I'm glad you thought it was  shambolic as I was a bit worried we were acting in a rather  'entitled' way. The fact that we had the call about a bone scan this afternoon does make me wonder if it was missed and should have been arranged and already done by now. The nurse who (wrongly) told us that there was no macmillan nurse on site today also told us that it was far too early to have the biopsy results back so we were very confused. Thank goodness for the regular encouragement on here for people to phone the Macmillan nurse or we'd be scratching our heads and losing the sense of calm and control which we'd managed to store up so far.

As we haven't any link with oncology yet - it's all been at the Urology department - who should John phone about getting treatment started asap and whether triplet therapy is a good choice? I'm assuming that could begin even before the bone scan results are back? If appropriate of course.

I think everyone's diagnosis goes differently 

Urology confirmed PCafter PSA and bone MRI

Bone scan came back clear 

Biopsy then took 8 not 5 weeks for results gleason 4+5 =9

Then urologist asked for pet scan which showed bone met in pelvic area 

Diagnosis by urology stage 3 gleason 9 

Turns up at oncology gets promoted stage 4 gleason 9 

This all started nearly 12 months ok 

But doing OK 

You are going through a similar path and the worst part good luck 

Hello Alison

As you know I am one for pushing treatment and advocating for your own case - but I know in my own case it works.

As I know your hospital I checked and until you have contact with oncology you don't have any contact details so based on the delays so far, lack of bone scan, shambolic results of the MDT meeting and your anxiety(I am sure they are your words) I would do the following in the morning:

* Call the switchboard on 01903 205111 and see if you can get hold of either oncology or booking and scheduling for oncology and/or

* If you have a contact for the Macmillan Nurse see if they can help push things along.

* Contact the hospital PALS department. YOUR HOSPITAL PALS DETAILS (Patient Advisory and Liaison Service). Tell them of the issues outlined above, he's got an aggressive cancer and you need an oncology appointment ASAP.

See how you get on - it pays to be polite but assertive - oh and nothing is impossible.

There's no harm in trying - after all it's John's health.

Best wishes - Brian.

Hi Ally,

So sorry to read this update and all the messing about you received yesterday.

I would get back onto the cancer nurse by email to request a copy of the biopsy, you have a right to have it, I got my partners that way when we went for a 2nd opinion and follow the steps Millibob suggests to get the oncologist appt. 

Please take some comfort John has been on the HT since 30th Dec, same day as my partner and hopefully this has put the brakes on.

Take care,

Jane

Thank you Jane - we are on the case today about getting an appointment - they do seem to have the Rottweilers on duty at the end of the booking line as twice now they've rung with a date for John to have an appointment which has clashed with something in our diaries (eg his bone scan is on the day we are down to take our grandson to a football camp as it's half term) and when we asked if there was an alternative we were told rather brusquely that there was nothing else available at all. Such a shame when everyone else has been so kind and accommodating (apart from the nurse yesterday!)