So yesterday, 2 weeks after his biopsy, John received a text just giving him another appointment with Urology. No mention of it being test results but we assume it must be. It's for 6/2 so about 4 weeks after his biopsy. We are just wondering if this will 'just' be to deliver the results so maybe with the nurse as others here have had that happen although theirs seem to usually be by phone, or will it be the whole package of results plus treatment options (although it seems a bit soon for the MDT meeting to have taken place already)? We had assumed that would happen at Brighton oncology whereas the urology department is at a different hospital in Haywards Heath, so about 40 mins drive away.
We're wondering if it might be helpful to phone the nurse and ask her but thought I'd ask here - is it common practice to get results and discussion about treatment at different times so we won't know more than the former and then have to await another appointment for the latter. We're aware that because John is on HT that we don't need to panic about waiting - but we would like to be able to think ahead in terms of planning our summer as at the moment we can't commit to booking anything (eg a trip to visit daughters in Australia) until we know what's what. We actually had theatre tickets for a West End matinee on 6/2 so have had to give them away as when John rang to change the appointment he was told the next available one would be in MAY!!!
Also John downloaded the NHS App but so far it only shows things instigated by the GP plus the results of a blood test to check his calcium levels when he had his first appointment with the Urologist back in December. No MRI or scan or PSA results, let alone the biopsy results although the East Sussex Hospital Trust website gives a link for the App saying it's where you can find out test results. Are we just being impatient?
Many thanks for any perspectives!!
Alison
Hi Alison, going from our own experience, I would definitely ring the prostate cancer nurse specialist! Our specialisy nurse was the one who gave us the results over the phone. If I recall correctly, this was followed up with a formal medical consultation where we were again told the results and passed over to the nurse to discuss the treatment options. My husband had, by this time and after our own research, decided that surgery was not what he wanted. He was referred very quickly to the oncologist who was absolutely fantastic. We had lots of questions to ask and he answered them all without us feeling a nuisance. He offered, even at that stage, to refer my husband to a surgeon if that is what he would like.
Our own experience is that you have to be politely assertive in order to get timely appointments. As we were passed along from one department to another we always made it known that we were prepared to take up at short notice any late cancelled appointments. This got us through the system much quicker.
I don't know how waiting lists are in East Sussex. I do know that in Leicester there are much longer waits for radiotherapy for prostate cancer due to higher demand not matched by sufficiently increased resources atm. This means that men with prostate cancer who have been commenced on hormone therapy to stop disease progression are considered safer to leave longer that people with more aggressive and less controllable cancers. I have to add that my own thoughts are that they are physically 'safe' but mentally and emotionally they are left in a very difficult place - a sort of limbo which, amongst other things, makes travel insurance a major problem.
I hope you and your husband soon get to know your plan and then you will feel much more in control!
Hi Alison, (Ally52 ), it sounds to me like you will get the results and talk about next stages. It is very unsettling but isn’t too far away. As for the appointment being at Haywards Heath I did wonder if Dafna (jacobanddafna ) might be able to comment, so have tagged her.
As for the NHS App, it is a complete lottery. I am Hampshire and can’t get any hospital info on it, just GP stuff. David
Hello Alison (Ally52)
I would be proactive here and telephone urology and ask for your allocated CNS (Cancer Nurse Specialist).
* If you have done the biopsy can we please have the results, Gleason score and TNM stage. If not when will they be available.
* Is this meeting just for the results or the results of an MDT meeting?
i do hope this helps and you get the information and can move forward.
Best wishes - Brian.
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Hi Alison,
I feel for you and John, waiting for results and planning ones future is the most stressful time.
Everything has been said above and mirrors my own experience with the Shrewsbury & Telford Hospital Trust (yes the one that seems newsworthy at present).
I would agree with others that you should be positive, polite and very proactive, it worked for me. If you care to read my profile by clicking on the 'MAN' logo you will see how it all panned out after a physical visit to the radiotherapy unit in April 2024.
The NHS staff are wonderful and do care about individual patients but are under so much pressure that they have to focus on one at a time. Jogging them into thinking of me and the dates that I could attend appointments quickly focused them on dates then it all worked well.
Our Trust has no method of making results available to patients unless you apply to them using the GDPR rules whence they are legally obliged to do so, this I have done. The only items that appear on my NHS App are copies of consultant reports that have been sent to my GP.
PS the 'MAN' logo has nothing to do with gender, it's the logo of the motor caravan that I drive!
Firstly, you are not being impatient. This waiting stuff drives you crazy.
Second I received my results in a meeting in the Urology Dept. I was started on hormone therapy then same day, pending a meeting with the oncologist.
Definitely check with the specialist nurse.
The diagnosis period messes with you head. The more certainty you have the easier it's to cope with.
Best wishes,
Steve.
Hi Ally52,
David2017 tag me in as he knows we are in Brighton.
As you rightly said Haywards Heath is the urology for most Sussex and the county hospital in Eastern Road is the oncology. HH urologists, after biopsy make the referral to oncology in Eastern Road. HH urologist can start the treatment with HT and they have MDT who decide upon MRI and biopsy the grade, aggressiveness etc of the PC. Saying that, they finish their job after referral to oncology which decide the pathway of treatment etc.
However and it is a big however, they have an amazing Macmilan team of nurses their phone number is:
01273-067800 ( they located in HH) They are extremely helpful and can answer most of your questions. They are very knowledgeable and very kind. They never answer the phone so leave a message( ignore their recorded message of a small team etc) leave a message with your name and telephone number and say you need them to call you back urgent. They call you back within 2 hours to 48 hours. For me they were god send. Still are.
Good luck with everything
Lots of love
Dafna
Thanks Dafna, hope you are doing well. David (hug)
Hi David,
All is good here. How are you? Have you stopped the inzu and what replaces it?
Lots of love
Dafna
Dafna, yes I managed to come off the Enzalutamide and feel so much better. I am now booked for 3 x RT in mid Feb, using SABR. Love to you both, David
This is very helpful - John is going to try to speak to the nurse tomorrow and take it from there, depending on what she says. He did ask to be considered if anyone cancelled their appointment when he tried to change the date yesterday but was told very curtly that they didn't take requests to do that. It was the first time that we encountered someone not falling over themselves to help us but maybe he was just having a bad day!!! Yes it's definitely a toll on our mental health but I'm forever grateful that the urologist believed in starting HT 'just in case' as without that our anxiety would be far worse waiting for everything to begin.
Alison x
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