Recent diagnosis -advice on treatment pls

Sorry you find yourself here, but you will get excellent advice.

A radical prostatectomy would almost certainly not work if the cancer has broken through the capsule, as it would be pretty impossible to remove all the cancer.

The standard treatment for T3a is HT and RT. In the last year or so, chemo has been offered too at some centres, as it's been shown to improve outcomes in some cases, and 4+5 is aggressive so they may think it's worth throwing in the chemo too.

The junior Dr is right that PCa is not as aggressive as most other cancers.

The Gleason score 4+5=9 is on the aggressive side of prostate cancers though.

GP's often know little about prostates and prostate cancer. See him anyway, but you might get much more help from the Clinical Nurse Specialist (CNS) at the hospital. You may have been introduced to your CNS when you were given the diagnosis, and often they are Macmillan nurses. Call and ask for an appointment (I have even just popped in on the off-chance and seen mine). They are often much better than consultants and doctors in explaining things and will have more time to spend with you.

Thanks Andy62

We do have a nurse but he is very difficult to understand and doesn’t always understand us.  They didn’t answer our question straight either. Which then worries us as it makes you think they are keeping stuff from you. 

When I called the GP after the initial diagnosis he was very good at explaining the test results. So I’m hoping he’ll be more helpful. 

Does HT treatment continue through RT? 

Thanks agsin for for all your help 

Edited by member 04 Sep 2019 at 15:43  | Reason: Not specified

It is really difficult for patients who may look at the results for various treatments following trial results. There are trials that conclude surgery is the most effective treatment (where the cancer is Prostate confined ) and others that Brachytherapy with seeds with or without the addition of RT is the most effective, whereas the link you gave suggests that EBRT alone may be at least as good if not better than Brachytherapy. This is the tabulated results of over 100,000 men taken over 15 years for the main treatments, plotted and shown as an elipse. It's shown in a consolidated form depending on staging. and is easier to follow if you delete others an take one form of treatment at a time. Of course there is quite a spread within the elipse and in reality an individual's situation could place him anywhere within it. The point I am making is that different conclusions can be drawn from different trials. However, 5 years is too short a period from treatment for it to be considered as other than temporarily curative if there is no indication of recurrence. Survival and recurrence can be two very different things. Although a survivor for 11 years since original treatment, it was only some 3 years after the RT that I knew I had a recurrence and was not cured. Then in 2015 I had HIFU which kicked it back again although PSA shows continued rise which is likely to need further treatment before too long to beat it back again. There are a lot of variables but essentially it depends how well a man responds to a particular treatment and how timely this is given.

I have only referenced the results for Intermediate risk here but there are graphs for low and advanced risk :- https://prostatecancerfree.org/compare-prostate-cancer-treatments-intermediate-risk/

Edited by member 04 Sep 2019 at 19:53  | Reason: Not specified

Actually, you want to have the RT when your PSA gets low. If you can get your PSA down to < 0.1 on HT before starting RT, the outcomes are significantly better. That's the reason for people spending longer on HT now before starting RT. I delayed my RT by an extra 8 weeks, specifically to achieve this.

Not everyone will be able to get their PSA that low on HT and you should not wait longer than 3 months unless your PSA is still dropping, but if you can, it's worth the extra wait. It's probably not a good idea to wait any longer than 6 months though, as PSA is unlikely to still be dropping significantly and you may blow it and find your PSA starts rising.

Edited by member 04 Sep 2019 at 21:21  | Reason: Not specified

Thanks John I will order a toolkit 

Hi all

Me again, we now have a date for husbands PET scan and he has now been on the hormone treatment since Tuesday.

He has been in quite a bit of pain and finds it quite uncomfortable sitting down although the last 2 days have been better - poss the HT or pain killers? We saw our GP who was very good at putting our minds at rest. I asked a couple of questions about diet - other half doesn’t want to eat red meat anymore. GP said eat what you like! Also should he be taking supplements my thinking is increasing both calcium and vit D would help bones strong whilst on HT and in prep for chemo. My GP said not to bother yet. Does anyone have any thoughts? Finally I want to take my hubby along to Pilates with me it is run by a physio and is a convalescent class (most of the people there are well into their 70’s) so not too difficult. I just thought it would take his mind off for an hour and help bone and joint strength.  Would this be good if he didn’t do anything that was uncomfortable?  

Thank in advance you all help so much. Apologies for the huge chunk of txt but it’s impossible to put paragraphs into on this chat! 

Edited by member 08 Sep 2019 at 18:38  | Reason: Not specified

Thank you for your reply.

 We haven’t seen the oncologist yet but I will check re supplements.

We’ll give Pilates a go and see.

Bone scan was clear. Some question over lymph and close tissue so PET scan next

Thanks & take care 

Edited by member 08 Sep 2019 at 20:15  | Reason: Not specified

Thanks Chr1s

I will find out. 

Well here we are 3 years on …. I’ve just been reading back my questions. What a lot!! It’s all a bit of a blur now.

My husband finished his HT 3 months ago after 3 years and Zytiga (this was the route in the end) after 2 years, he also had radical radiotherapy March ‘21 for 4 weeks. During his treatment he was prescribed a low dose of prednisolone that finished in December 2021. 

Our question is after about a month of stopping the steroids he has had incredibly stiff fingers and shoulder pain. We are wondering if anyone has experienced anything like this after finishing hormone treatment? 
As always thank you for being here.