Query re waiting time

Please may I suggest to phone up your specalist medical  secretary or phone up Macmillian nurse in your hospital if no joy and you able to go to the hospital you are under and if they got Macmillian drop in centre go and ask if they are able to help if not go to out patients deptment and ask please could they help you

Sorry you have joined us all and agree- it feels like they’ve missed you. I would suggest you contact the PALS department who should be able to help. If not suggest making formal complaint about lack of communication and response. Hopefully you should get an answer.

as an alternative- is there a nurse specialist assigned to you. Good thing is treatment has started with the HT which is good.

all the best xx

Many thanks for your suggestions. I rang our designated nurse who gave us the consultants secretary’s number . That the answerphone that doesn’t respond to messages! As long as it is not affecting things we don’t mind the delay- at least the treatment has started- it’s just the lack of info that is stressful! Patience was never my strongpoint!

Hello Pennyfarthing

Welcome to the club. And indeed welcome to the "Gleason 9" club, there are plenty of us still kicking about on here so that in itself is good news!

To start off with as your husband is going down the HT/RT route the first step is to start the HT. As soon as this starts it stops the production of testosterone in his body. The prostate cancer cells live on testosterone and if he's none or very reduced testosterone they can't thrive. You didn't say what his initial PSA was - but it will be much lower now - so the cancer is under control.

It's normal to start Radiotherapy 3 - 6 months after HT starts so I agree with Hanandy, if time is passing contact your hospital PALS department and make sure you tell them the delay is causing anxiety!

Once you get your oncology meeting your husband should be given a date for a "planning scan" and 4 - 6 weeks later the Radiotherapy should start.

No immediate panic - but keep the hospital on it's toes.

I am a Gleason 9 and went down the HT/RT route (still on HT) and am 18 months from diagnosis and feel amazing. You can follow my journey by clicking on the icon of the beach if that helps (there were a few issues with me so it's not a simple journey).

Feel free to ask any questions.

I wish you both well.

Kind Regards

Brian.

Hi. Initially we got nowhere as my husband seemed to slip into a hole between urology and oncology and also because originally we had seen the consultant privately. In the end with my patience running out I told the oncologist's secretary that if nothing had happened that day by 11am I was going to pals. Within an hour we got a phone call with dates for appointments. Sometimes you need to be firm . Good luck 

Just to say a big thank you for the advice here. I'm not the original poster but it's been so helpful even after one call with the Macmillan centre at the Royal Free!

What a great place this.

Just an update - still no oncologist appointment. However husband had his second 3-month Prostap injection this week and has been reassured that it should come through in September. I am less convinced but we shall see!
Many thanks for all your suggestions - it has been such a help to read all your experiences and so to understand what is ‘ normal’ in this strange club that we didn’t want to join!

Hi Pennyfarthing

Many thanks for the update - I am sure your oncology appointment will turn up.

I hope your husband is coping with any HT side effects well (if he's had any).

It's worth mentioning that going down the HT/RT journey you need to keep up with your exercise as fatigue will be around at some point. It's also worth ensuring you are on Calcium / Vitamin D tablets and the treatment can weaken your bone structure.

Kind Regards

Brian.