new postrate cancer

Hi Dale, and a warm welcome to the forum though sorry you have to be here, we can all understand the emotions you are experiencing, it's an awful thing to be told you have cancer, so well done in reaching out to the forum, you will find the support and advice from the guys and girls on here so helpful and reassuring, and all from people who understand where you are  and the decisions you face, can I ask, you say the cancer has broken through the prostate, and has it reached anywhere else?, and regarding your PSA it is high, but it's a little more complicated than that, variant and cell type and pattern are at least as important. My PCa is quite unique so I'm not a good reference for you, but I know there are guys on here with similar stats to you who are doing very well. Best wishes my friend.

Eddie 

Hi Dale,

Welcome to the forum, My husband had a PSA over 100 and initially we were completely paralysed with fear. We had a few very difficult weeks with not understanding what was happening and what to do. Very fraught, but as you go through the tests and scans things will become clearer and a team of specialists will work out a treatment plan.  What's important is don't bother to start googling everywhere at this point for information, because there's a lot of stuff out there that is really outdated and just down right wrong. Always check the date and the source. if it's even a few years old it's dated and things have moved on since. Stick to the information on MacMillian and places like Prostate cancer UK, because they will have up to date info on stages and treatments. I'm sure Millibob will be along shortly with some links. 

There are quite a few people here that had an initial PSA over the 100's and some in the 1000's and you will find they have treatment plans that are very successful at knocking this score right down and putting the cancer to sleep. There's treatments that target your cancer and kill and disable the cancer cells and there's a lot of combinations of treatments combining both that are available so don't despair.

First you have to get through these first few weeks of tests to see exactly whats happening and what treatment plan is appropriate for you, because every one is different.  So... you have found the right place to speak freely of your fears while you work through these next few weeks and you will find much help here, because everyone understands what you are going through. We are here to give you answers if we can and of course support. 

Best wishes

Lorraine

Hi golfboy - my good friend Richard had a presenting PSA of 2,016 (!).  Believe it or not, it is now 0.04 !   He had 6 rounds of chemo and is on hormone therapy.  Don’t lose hope: the treatments today are truly remarkable .  AW

Good morning Dale golfboy and welcome from a wife. As others have said, it is too early to start going through what will happen but you do need to know what kind of tests you are likely to have and what the results might mean so I have attached a link to a book which you can download for free.

https://issuu.com/magazineproduction/docs/js_prostate_cancer_guide_for_patients_ezine

All the initial tests are normally carried out by the Urologist and you are then referred to an Oncologist who, along with a team, will look at all the results and decide on a treatment plan but I would expect hormone therapy will be offered initially to put the cancer to sleep wherever it is in the body giving the experts time to come up with a plan for the 'killing' the cancer bit. All prostate cancers are treatable and there have been many recent developments in hormone therapy, radiotherapy, chemotherapy and different protocols for treating the different types so don't speculate what will happen at the moment.

One thing we have all learnt is that the best thing you can do for yourself at the moment is to get as fit as possible and look at your lifestyle as this will help you to deal with the side effects of treatments.

Ask as many questions as you like no matter how small or trivial you might think them and we will try and help.

Good Morning Dale (golfboy) 

Another warm welcome to the Macmillan Online Prostate Community from me, although I am sorry to find you here. I am Brian on of the Community Champions here. I also have Prostate Cancer with an initial presenting PSA of 182.

You are in a great place for help and support and although the diagnostic process does take it's time, as others have said it's a good time to start to keep fit to do battle with the cancer. A fact to remember is that 98% of men with Prostate Cancer die WITH it not OF it!!

I can't add much to what the other Community members have said apart from here's a link to the Prostate Biopsy. Once you have had this and you know the results your oncology team will come up with a treatment plan for you. 

It would help us to help you (and not keep asking) if you could put a little bit about you in your profile. To do this on your home page click on the chair (top right) and then profile and then edit. Once you have written something remember to save it - you can read a members profile/journey by clicking on their name or avatar.

I hope this helps, ask anything you want - no question is too trivial.

Best wishes - Brian.

Hi Dale (golfboy ), you are at the worst stage and we all understand how scary this is (we have all been through it).  Try not to focus on the cancer (easy for me to say) but just do ‘normal’ things.  You will know the diagnosis soon enough and we can help you through what comes next.  To put things in perspective I have a friend whose initial PSA was over 2,000 and is on a curative path!  My own cancer had spread on diagnosis and that was over 7 years ago and I have had a good quality of life.  Best wishes to you, David

Thankyou all for the all the positive words. I've had a letter come through today with my biopsy appointment, so see what the outcome is from that and then move on .

Hi Dale, that's good to hear your biopsy is booked, ON diagnosis June 2022, my cancer was in 5 organs and 8 lymph nodes, 29 months on Hormone therapy and 20 cycles of aggressive Radiotherapy April 2023 and my cancer is undetectable apart from one lymph node which will be zapped "SABR" soon, and my treatment just 29 months ago, has been superseded by better treatments already. 

Eddie

hi all. I no it's early days for me but I don't seem to have much appetite. is that normal at this stage or do you think it could just be the worry and stress of it all . cheers

Hi golfboy ,

my OH  and I had not much of an appetite during the testing stage . I think that it was more of worry & stress to be honest.  

You need to try and eat a balanced diet even a smaller amount more often . 

Since he had his radiotherapy his appetite is poor so I tend to make light meals or soups that is tasty with pieces of chicken  ( chicken noodle)  or fish ( Cullen Skink) 

take care & keep us up to date . 
Liz & OH xx