First post

Hi Finstray,

Welcome to the group although sad that you had to join us.  So really good news that your PSA has dropped quickly, as a result of your hormone treatment.  I have been told that a rapid response is always a good sign.  You don't say but are they offering you radio therapy alongside your HT?  Usually they leave 3 to 4 months after you start your HT.  You usually get 20 sessions over 4 weeks ( they give you the weekends off for good behaviour), although recently they have reduced it to 5 or 6 sessions in some cases (I think they give you a higher dose over a shorter period).

Like you, I am on 3 monthly hormone injections (Zoladex) plus the Xtandi (enzalutamide).  You will be pleased to know I've been going on this treatment for 3 years now and it is still effective.  My biggest problem with it is fatigue.  I am still working, albeit an office job, I do feel quite exhausted by the end of the week.  At the start I suffered quite badly with night sweats although as I've gone on these have reduced in both number and severity - although they will probably get worse as the summer comes. 

Hope this is helpful.  Some more people will come along soon to offer their advice I'm sure - you've joined a veery supporting group.

All the best Steve

In the word of others, welcome to the club nobody wants to be in. I was diagnosed with PC last December and yes it does come as a shock but my advice would be to read everything you can find on this website and then decide to fight the little bugger but most importantly look to the future with an open mind. Ask questions of the specialist and nurses. 
if you have done it already put as much detail on your profile as you can. Mine is available for reading about my prostate cancer journey. This forum is a great resource. Never forget that there is no such thing as a daft question. 
good luck on your journey. 

Eric

Hello Steve,

Thank you for your prompt and kind reply, no radio therapy mentioned, so glad to hear your positive comments regards treatment and wish that continues for you.

Thank you Eric for your prompt and kind reply, I will take your advice to heart. While I find myself a bit confused at times with the information I receive, I've an optimistic outlook, pint glass half full not empty kind of thing and family support.

I hope your treatment is working for you, up and at them.

A warm welcome Fintry bay. Firstly your PSA has dropped considerably in a short period of time which is good news. My husband was diagnosed T4 with a large prostate mass plus smaller mass in upper abdomen, along with lymph node involvement in July 2020. His Gleason score is 4+5/9 so more aggressive than yours - definitely good news for you. He has now lost partial function in one kidney and had to have a ureter catheter for a while into the other one. As they were unable to get a catheter into the one kidney his doctors decided that he could live with just one so didn't fit him with a nephrostomy bag but what we did find was that when it came to the 12 week catheter change they were able to get into both kidneys as the mass had shrunk thanks to the hormone therapy and now he has no catheters at all. We are just careful to protect the kidneys with what he eats and drinks, plus he does not have the contrast when he has scans because his creatinine is too high, and eGFR is showing stage 3 kidney disease. Interestingly it has improved from stage 4.

He also had 33 sessions of radiotherapy to the whole of the prostate area and this has done the trick in that area. He is on Prostap implants every 3 months for life. Initially he was on Bicalutamide for 18 months but when scans showed distant met and lymph nodes enlarging he was switched on to Xtandi. The same thing happened 18 months later so he went through 6 sessions of chemotherapy. He is still doing well and we have a good quality of life. The main side effects of the Enzalutamide were the same as those for other hormone therapy - fatigue, muscle wastage, putting on weight round the middle, man boobs, hot flushes, crying for England. Treatment for the distant mets depends on where they are. SBRT - a focused high strength form of radiotherapy - has been found to be successful provided it doesn't cause any collateral damage.

We have been assured that there are still more tools in the toolbox.

Please come back if you have any questions.

Thank you Alwayshope, you've given me a good insight. Best wishes to your husband and his treatment ahead

Hello and Welcome Fintry bay - I am sorry to find you here but we are a good bunch. The others who have already replied have "stolen my thunder" and all I can say is it's OUR community and YOU are most welcome.

Ask anything and you will get an answer - we do talk about anything but Prostate cancer does keep ruining a good conversation!!

Could I ask you to complete your profile page with your diagnosis etc - it will stop us asking you each time you post something.- To do this on your home page click on the chair in the top right corner, then "profile" and then "edit". To see any profile  just click on the member's avatar - mine is the beach.

Best wishes - Brian.

Hello Fintray boy and welcome to the club this forum is a special place as we all have something in common and it’s great that we can get advice and bounce off each other,I was just diagnosed in January and waiting to start treatment,I’m 3+4 Gleason 7,keep chin up and take time for yourself,everyone on here will help no end

Hello and welcome. The 2 words prostate cancer are very scary but hopefully now you have joined the group things won't feel so scary as you take everything in. Ask any questions you have as someone usually has an answer or can point you in the right direction. We also have a lot of fun in here with Brian being the ring leader!!!!

Shar said:

We also have a lot of fun in here with Brian being the ring leader!!!!

I am only bringing light to what is sometimes a very dark place - but yes it's usually me!!