Wait times

Hi Willow

Unfortunately it does look like wait times are increasing for all aspects of treatment.

The good news is that the stats are fairly low although I realise the tumour is on or near the gland edge but at least the HT is holding it back.

Try ringing them up every now and then pushing for an earlier appointment, perhaps they could have a cancellation.

Am sure everything will end up ok.

Best wishes

Steve 

Hello Willow67 

Me again - but don't worry - we are all here for you,

* The HT should start with a course of 28 days of Bicalutamide tablets to stop "hormone flare" Half way through this he should start on his regular HT treatment.

* There are tablets and injections - I can't comment on the tablets but on 3 years of HT I am on 6 monthly Decapeptyl injections and have no side effects from the injections - I should add - yes I have had side effects from the HT!!

The HT works almost as soon as it starts - reducing the testosterone and thus stopping the Cancer having any "food" and thus the ability to grow.

As for your meetings, all NHS trusts are under pressure - you can always contact your team and tell them you can take any cancellation at short notice - there is always the hospital PALS service (Patient Advisory and Liaison Service) you could contact them - tell them the delay is causing anxiety and can they bring the appointment forward.

I hope the above helps - happy to answer any other questions - let's get the positive vibes going again!!

Best wishes - Brian.

Hello  Willow67 and a warm welcome to the forum though sorry you have to be her .and we can all relate to how you are feeling and the worry's regarding delays, It's good he has started treatment, hormone therapy HT injections should start within 4 week of starting the pills. This will stop your cancer from spreading while you wait for radiotherapy RT, I waited from my urology referral to discussing treatment with my oncologist about 2 months so similar to you. The average time most of us waited for RT was 5 to 6 months. Willow you can sometimes speed things up by contacting the hospital and asking for an earlier appointment should someone else cancel theirs. This really is the worst part of every ones cancer journey but you will feel a little better when you know what the plan is and treatment is in full swing, I'm sorry to say the NHS is overstretched and underfunded and delays do happen, but you will find the guys and ladies on here so helpful, happy to share their experiences, offer advice and support and to be here for you whenever you need us. If you can share your husbands stats, Gleason score, PSA number and TNM staging it will help others with similar stats help you. take care.

Eddie

Thanks Steve, you're right the HT is holding it at bay. We will certainly keep on top of the appointment and try for cancellations. Thanks again

Thanks Brian... again! We have no idea about HT injections as that was going to be discussed with the Oncologist in 2 to 3 weeks. We've tried to contact the team we are under but no replies yet. At least he's on something to hold it at bay.

Thanks again.

Hi Eddie, he's only on HT tablets and injections were to be discussed with the Oncologist but that is 10 weeks away. We've contacted the specialist nurses but no reply from them. Thank you for the information about wait times,its reassuring to know its"normal"! I've put hubby's stats in my profile btw. Thanks again. 

HI Willow happy to help, looked at your hubby's profile and you are well on top of your husbands stats and right to be confident he's on a curable pathway.  He is also the same age at diagnosis as myself and has ischaemic heart disease "CAD" as well, and as you know it will have an impact on treatment options, take care.

Eddie

Hello Willow, my husband started the ht in Nov 2022 and saw the oncologist in December 2022. Had Rt Feb/ March of 2023. We have been informed at the local prostate support group that the 3 month wait for RT has now been extended to 6 months at our hospital due to increased demand. Apparently, we were told, this is ok because men are ‘safe’ once they’ve started the HT and other cancers need more urgent attention. My argument would be that they may be physically safe but what is the impact on their mental health? My question would be does this mean that men are on HT for longer if the RT wait is longer and, if so, they are exposed to side effects for longer?

I totally agree, the mental toll is as bad as the physical. Yesterday we were told,Oncologist in 2 to 3 weeks and Radiotherapy/Bracyatherapy in 3 months. We were feeling quite positive and pretty calm. Now today it's all up in the air,,10 weeks just to see the Oncologist numerous phone calls,messages left and no further forward. Constant conversations trying to reassure each other. HT is keeping it at bay but what are the long term effects of extended HT treatment. Also the constant niggle that maybe the HT isn't stopping it enough.  I hope you are both doing OK now.

Hello Worriedwife, not all men are safe from disease progression on HT, I know one guy quite well whose PCa metastasized, take care.

Eddie