Advice wanted

Hi Alan (Al985 ), to me the order of attack should be primarily to remove the PCa, so RT sounds like the right course of action.  Sorting out the other issues need to go on the back burner for now.

Good luck with the RT.  

Hello Alan (Al985 ) 

I know it's going to be hard for you in the light of your previous surgery BUT you need to trust your new oncologist. She knows your history and is going to be doing her best for you with this recurrence.

Don't worry about the PSA doubling time or anything else at the moment, concentrate on the "here and now". You have prostate cancer and it's being treated. The normal course of action with 2 years Hormone Therapy is to run for 4 to 6 months on the hormone therapy, then blast the cancer (I assume the prostate bed area) with Radiotherapy.

Any sphincter or implants won't happen until the New Year at the earliest and you have any HT side effects to think about first. One step at a time and get this right.

Do let us know how you get on Monday.

Best wishes - Brian.

Hi Alan,

I am sorry to read of your problems, many of which are my experience too.

I have managed to get the incontinence under control with slightly different regime of kegels and vitamin supplements to rectify deficiencies caused by medications which I only discovered recently. The improvement was within a week or so of taking the supplements which was a pleasant surprise.

Prior to having salvage radiotherapy I read around the subject and consulted a few different hospitals and doctors and it seems that whilst other options exist beyond radiotherapy none of these are offered until you have had standard radiotherapy which seems to boil down to EBRT either 20 sessions or 33 sessions with ADT if above PSA 0.5 or without ADT if below a La the POSEIDON (IIRC) trial published this January that showed no extra benefit to adding ADT in general below PSA 0.5.

I opted for the 20 sessions without ADT which one Oncologist recommended whilst another suggested 33 without and yet another recommended add in ADT to 33.

It is 6 months after EBRT before they do a PSA after so no idea if that was the right decision as yet but fingers crossed.

Targeted Immunotherapy seems to be improving research wise and targeted injectable radioactives like Lutetium 177 that sticks preferentially to Prostate tumours that express the right antigen on its surface seem to be promising but as its over £100,000 for a course of around 6 shots every 6 weeks they seem reluctant to offer it maybe due to cost.     

I don't think its available at many hospitals yet. Other hormone based therapies exist too.

The staff in our Urology department are generally unhelpful with providing help and information with one or two shining exceptions that are worth their weight in gold.

I do not know what the specialist nurses job description is (but in general care and compassion does not seem a requirement) or what function they perform when not on the telephone when they seem to read from a script if any questions are raised and they either read it again or say why don't you ask your surgeon which they know is well nigh impossible should you ask them to be more specific.

Many urology departments seem to be this way but others seem perfectly fine from talking to other patients.

All of the above is just my experience and I am no expert so check everything with your oncologist.

The oncologists do seem more patient centred.

Good luck with your treatment.

Albert 

Hello Albert (Bert) 

An interesting post and I assume you are doing very well with your own treatment - just a few comments if I may;

* If you intend to take ANY vitamin or other supplements, please do ensure you check with your team before you take them as there can be a clash with other prescribed medication you already take.

* Targeted immunotherapy for Prostate Cancer in the UK is only available on clinical trials at present and is not approved by NICE for general use at this time.

* In the UK - Lutetium 177 is normally only used as a last resort treatment due to it's cost as you quire rightly said.

I wish you well with your own treatment and recovery moving forward.

Best wishes - Brian.

Thankyou for your reply Brian,

it is always good to talk.

Our comments seem to tally so hopefully they might be of some use to Alan and any others in need of a conversation or a friendly ear.

Its always good to run anything you are or are intending to take with your oncologists whether professionally prescribed or taken through choice. I discussed the supplements with mine but they did not have a view either way.

I chose to continue with one vitamin supplement as research suggests it may help improve the effects of prostate radiotherapy which I hope it does. Another I chose to drop for the time being as its antioxidant qualities might reduce that effectiveness.

Thanks for your good wishes for my treatment and recovery and may I offer my good wishes for yours too.

I hope Alan reports back on his progress, we all want the best for him.

Albert aka Bert

Hi Brian. 

As predicted 33Fractions and 24 months ADT after PETSMA scan.Only one problem pathologicslly claustrophobic. Offered treatment without PET scan. Have researched and found there should be NHS pathway for scan under general anaesthetic but the scan is done by private company who will not or can not facillitate  it under a GA. Advised scan is not essential, only doing it because ot is gold standard. I just can not manage this much more. I think my current state of melancholy is precipitated by the fact that the trust dismiss my concerns about histology, not being read. It doesn't get any easier

Alan

Hello Alan (Al985 ) 

I can understand your issue with trust - it needs to be rebuilt and that will take time - I understand what you say about the PSMA-PET scan (it's not as bad as an MRI - it's only the "polo mint") however it's not necessary it's as you say the gold standard.

I would accept the treatment as offered without the scan - don't forget your new oncologist is doing what's best for you and your family and she's doing fine so far.

Hormone Therapy - we can get you through this as a group - there are side effects - we don't all get all of them BUT there's a work round to most of them. I've been on HT for almost 4 years and never missed a day's work!!

Radiotherapy - like shelling peas - you just lay on the "sunbed" and it's done and dusted - it's harder finding a parking space at the hospital for the car!

Let's rebuild your trust - get you cancer free - and we can go through this together - you are only the other side of the Pennines - I am sending my positive thoughts.

Stick with it - you have the inner strength to do this.

Best wishes - Brian.

Thank you so much for the continued support. The oncologist has been amazing and she has done a great job in rebuilding the trust.  She has agrèed to ask about about a general anaesthetic, if no it is full steam ahead. 

I think the latest blip has been caused by the response from the trust about my complaint. It wad a complete load of bs

 Apparently not reading the histology result isnt an issue!. I just do not understand.

Hello Alan (Al985) 

You look after yourself and don't let the past get to you.

Al985 said:

 Apparently not reading the histology result isnt an issue!.

That will be the Trust publicly protecting one of their own, and I would think in private thinking "this guy is a liability".

Best wishes - Brian.