Telephone appointment to discuss LH's MRI results booked - worried!

Hi Dogs4me

It does seem a bit puzzling the way they have cut back the appointment to a telephone call and biopsy at a later date.

I suppose if MRI doesn't show anything too severe then biopsy at a later date is ok.

So very important to note what the MRI says and to get a copy of the MRI report, fingers crossed any tumour is still inside the gland.

An appointment to get MRI results would only last about half an hour so presumably the rest of the day would have been for the biopsy .

Come back on here when you have the MRI detail and if for some reason they give u some not so good news about the MRI make sure u ask when the biopsy will be

Best wishes

Steve 

Thank you Steve

I hate the fact that obviously they know the results but we can't find them out for over a week.  And my my mind keeps going to all sorts of bad reasons that this might be happening.  I also wish he was going to talk to a consultant and not a nurse :( 

Regarding the appointment that we were expecting they said that they would be doing a urine test, a flow test for this who have urinary problems (which he does) and any further scans that might be appropriate and then the biopsy last and to allow about 6 hours for all this and to have someone to drive him home.  So I have no idea what is going on - it seems a big change!

Thanks again

Yes doesn't sound at all helpful.

Possibly put in a complaint would be the other thing to do .

Steve

I think I would complain if it were me but I know hubby wouldn't.  He will just say 'we will find out next week and they are very busy'.  Thank you again for your help 

Hello Dogs4me 

Sadly this is far too often now in the NHS where they change the plans. You need to Self Advocate on this journey and keep any names, contact telephone numbers and e-mail addresses for the hospital staff.

A PSA level of 57 indicates cancer so when you get your telephone call a week tomorrow:

* It's best to have it on speaker on your telephone - it's best to have 2 of you there and record it if you can.

* You need to ask for the results of the MRI scan and also the bone scan.

* You need to ask why no biopsy has been listed and say your LH is free to come in at short notice if there are any cancellations.

* At this point is may be worth mentioning the cancer pathway - 2 weeks from GP to first consultation and a maximum of 62 days to treatment (28 days for urgent referrals).

I do hope this helps - if your anxiety levels are increased, please do contact our Support Line on 0808 808 00 00 (8am to 8pm 7 days a week).

Best wishes - Brian.

Thank you Brian

Will make sure to do what you suggest. Been doing a bit of investigating and I have discovered that the MDT meeting is on a Wednesday morning and he got the phone call this afternoon. Also the nurse who will be calling next week is a member of the MDT. Not sure if this is relevant.

I feel really disappointed as at first things went so fast. GP sent in referral on the Monday, he got phone call on Wednesday and MRI scans on same day. But now we have just a phone call and have to wait a week for it ......... 

My worse fear is that they have seen something on the scan that means there is nothing they can do......so no biopsy is necessary........does this ever happen?  But then surely they wouldn't do it by phone in a week? My head just keeps going round and round ......

Hello Dogs4me 

The waiting is the hardest part - my PSA is rising - I had a scan late Bank Holiday in May and I have a face to face this morning - 3 weeks after the scan!

There are 214 Hospital Trusts in the UK  - take  of the ambulance and mental health trusts and you have about 180 - each one goes about business it's own way.

Yes, I  have Community members who have not had a biopsy as it was thought they didn't need the extra worry - BUT he's had his MDT meeting and they know the pathway forward - sadly it's just a case of waiting. You could be cheeky and if you know who is calling you - ring them - see if they will speak to you, after all it's your information they have!!

Best wishes - Brian.

If it was me I would ring up and try and speak to the nurse, say you are worried and feel too anxious to wait and is there anything they can tell you to reassure you now, even if they can't/don't go into great detail. The waiting is always the worst and as you say your mind goes into over drive. Best wishes 

Thank you Brian

Were the members who did not have a biopsy offered any treatment at all? He is fit and active atm with no pain and frequent urination his only symptom. So anything to keep him as he is now for as long as possible would seem very worthwhile. I know I am getting ahead of myself .....

thanks again

Hi Dogs4me , my gut reaction is that the MDT are not concerned about the clinical effect of a weeks wait.  That is great news but pushes your anxiety up during the wait.  Again on a personal level, I have found the specialist nurses to be great and hopefully your one will have all the answers for you.  I did wonder if you have access to your own records on the NHS App?  I live in Hampshire and can’t see my own info but I know others around the country do have access (it’s a bit hit and miss).

Don't go searching on Dr Google as you will worry yourself silly with misinformation. Ask any questions and we will do our best.  Keep us informed, good luck, David