Hi all
Well we finally rang the hospital hoping that they may have a list of those willing to take a cancellation for biopsy cancellation but it was a waste of time. They said the they rarely get cancellations and that if they do they look at the people who have later biopsy appointments and prioritise them. So all we can do is wait. Apparently they only have 2clinics a week. She also says if the consultant is called into surgery these can be cancelled! She was a bit grumpy tbh.
On a more positive note the GP has done good and LH has now started on Tamsulosin. Gutted about the biopsy though and with the resident doctors going on strike 2 days before LH's appointment I am really worried ...
D4Me
Hi Dogs4me
When I have needed to 'gee things up' I have visited our trust's cancer centre in person and asked to speak to a person responsible. It's worked for me twice.
My Trust had biopsy clinics on two days per week (Thursday & Friday) with eight patients per day but did call in private support to put on a Saturday clinic when necessary.
Rod
Hello Dogs4me
I know what you mean about the worry - I am sure LH's biopsy is scheduled for a Sunday too.
Let's hope everything gets sorted before then. At least the GP's come up trumps. Again, let's hope the Tamsulosin works.
Best wishes - Brian.
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Hello - do you know who you spoke with at the hospital? When we were chasing appointments for my husband I spoke with the urology services manager and she sorted things for us.
I then started keeping a diary and noted down name, direct phone number and what was said for each and every interaction with each of the departments we paassed through. This was invaluable in saying 'But on 9date) you said.....'
I just could not take 'no' for an answer at the time. You may also find your prostate cancer nurse specialists helpful - for us some, but not all, were brilliant
Another thing to be aware of is that people are being told different lengths of time for getting their biopsy results. This wait for results is an anxious time. It may be a good idea to confirm when you should expect the results and note the name and contact number down!!!
We did find that after the biopsy showing cancer was present, he needed scans.I think this is a common practice. Again, we took a last minute cancellation
HTH
Good luck!
No stupidly we didn't ask her name. But it is good advice going forward.
I will make sure we ask about time frame for results when he finally gets there!
Can I ask what scans were required after the biopsy? He has had an MRI and an MRI marrow so far. A PSMA PET scan was vaguely mentioned at one point as a possibility but not sure when that would be.
Many thanks
D4Me
That approach seem to be the most successful at getting results.
It's so sad that it is the one who shouts loudest gets the better service but that seems to be the way it is.
Hello Rod
From day 1 I had an indwelling catheter and needed a TURP operation to enable me to wee properly. I was told the waiting list was 12 - 18 months.
I was chatting to my CNS and the conversation went like this:
Me : Julie I need this TURP operation so I can have my radiotherapy.
CNS : Brian, it's the NHS - he who shouts loudest gets!
Me : JULIE - I NEED THIS BLOODY TURP OPERATION NOW!!!!!
CNS : (Laughing) OK you've shouted, leave it with me.
Quarter of an hour later my telephone rang -
Hello is that Brian? This is booking and scheduling, can you come in for you pre-op on Friday?
And the rest is history - I rest my case.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Hi Oscar, I always advise people to be ‘politely assertive’ rather than shout or be aggressive etc
from what I have gleaned here, some people have PSMA scans, some have CT scans and others have bone scans after cancer has been found in the biopsy. I don’t know the rationale for each. My husband had a bone scan and , thankfully that was clear. He had an MRI scan prior to the biopsy and after his raised PSA .
So, the order of service seems to be : raised PSA for two consecutive blood samples, mri, biopsy to determine cancer present, further scans to detect any potential secondaries.
no, not stupid! We didn’t think to get names to start with! Then we began to lose track of everything so I started my diary. It came in so very useful! We ended up making a formal complaint to the hospital and so I had every detail at my fingertips! It also gave me some sense of control or power at a time when everything was spiralling out of control.
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