COG4

Hi shahramahroyan sorry you have joined our club.  Are you able to provide the biopsy results, PSA scores, tumour size and any scan results?  That will help us work out what stage you are likely to be at.  Generally a few weeks wait isn’t an issue.

Hello Shahramshroyan, sorry to hear of your diagnosis and the worries we all feel. If you are in England there is what’s called ‘Referral to treatment time’ (RTT) for cancer care. This is that all cancer patients should receive their first treatment ( not including diagnostic tests or consultations) for cancer within 62 days of their  GP referring them to a NHS hospital. Hospital trusts have to keep keep and publish records of their percentage achievements of this RTT. I am not aware of any sanctions as such if they don’t keep to this target ( but there may be?) but it is a stick to beat them with if your first day of treatment looks like extending beyond 62 days.

we used this but also let all departments we were passing through know that we were willing and able to take any cancelled appointments at short notice. Sadly, we found we had to monitor our own progress through the system and be politely assertive in order to get through the treacle of znHS bureaucracy.

hth and good luck!

Hello shahramahroyan 

i have noticed your earlier posts but haven't previously responded.

You are a T3aN0M0 Gleason 7 (3+4) with an initial PSA of 7.3. It's the T3 that puts you into CPG4.

So T3a means the cancer has broken through the outer layer of the gland and is likely to grow quickly.

I am a T3aN0M0 and personally as the cancer has escaped the gland I wouldn't be going for surgery.  The time scale of 6 weeks is no good as your anxiety levels will increase pending a treatment plan so my advice is:

* Contact oncology and tell them you are available to accept any short notice appointment if they can't give you one in the next 2 weeks.

* Contact the hospital PALS (Patient Advisory and Liaison Service) office. Tell them you have an aggressive cancer and you can't cope with the anxiety of waiting over 6 weeks for an appointment. Remind them of the cancer pathway timeline.

i hope the above helps. Please do get back to us and let us know how you get on.

Best wishes - Brian.

I agree with Brian and would try and get on HT as soon as possible.  Having said that PCa is fairly slow growing, so don’t over stress.

Thank you Brian

I have managed to talk to oncology today and they gave me an appointment for 22nd of January and Meanwhile, if any cancellation comes up, they would let me know, I hope it is not gonna be too late.

what do you think Brian? Plz

Many thanks

Hello shahramahroyan 

Well that's one less worry - a much earlier appointment, so that should reduce your anxiety levels.

As a Community Member I am not allowed to go against medical advice,however as you haven't had any yet i will give you the benefit of my thoughts.

First off I am a T3aNoM0 but my initial PSA was 182 and I was placed on Hormone Therapy with Radiotherapy to follow from the day I saw my Consultant - my journey is complex though - click on my name or avatar for the full journey.

It's the T3a that's the worry so:

Surgery - Not my choice of treatment - if they don't get all the cancer, then you will end up on Hormone / Radiotherapy anyway, plus removal is major surgery.

Brachytherapy - This is less invasive and with added Hormone Therapy (BrachyBoost) may be a good choice. It's not offered in every area but you can ask for it. Details here:

Brachytherapy-for-prostate-cancer.

You might also like to have a look at this thread as my good friend Alpine Wanderer took this route,

 Surgery or Radiotherapy? Decision made! 

Hormone Therapy/Radiotherapy - I think this is what you will be offered - Details in the links here:

Hormonal-therapy-for-prostate-cancer.

Radiotherapy-for-prostate-cancer.

My best advice is to get pen and paper, make a list of the pros and cons of each treatment as to how the treatment and any side effects will affect you, your partner and any family.

I hope this helps - feel free to ask any questions - it's an important choice and not to be rushed.

Best wishes - Brian.

Hi Millibob Just to clarify:

brachytherapy boost is a combination of brachytherapy, external beam radiotherapy (EBRT) and hormone therapy (HT).  The EBRT can vary between prostate gland only up to whole pelvic area (mine was all the way up to L5 in the lumbar). The HT can vary between 6 months up to 3 years. Recent thinking is HT of 6-12 months is sufficient.   AW

Ha! Thanks AW - I thought when I was typing it I was missing something. Thank you for correcting me - it's been a long day!!

Cheers - Brian. .

Thanks again Bryan I feel for you. You’ve been through a lot and as you said every day school day for me too

I wish I was as strong as you laughing all the way through it thank you again and again