Recently Diagnosed - In a state of shock

Hello Blueman 

Hello again, I am pleased you have found us  So this is all my personal thought, I am not medically trained - you can read my journey bu clicking on my name or avatar.

For me - if the cancer has left the gland - I would give surgery a miss - you don't want the surgeon in there spreading the cancer cells about - it's fine if they are contained in the gland. For your information - here's our guide to surgery:

Prostatectomy-for-prostate-cancer.

If it's left the gland and is in your bones, then it's not curable, so I wish you well with the bone scan results.

Your next choice would be a visit to oncology and a combination of Hormone and Radiotherapy - again here's a link to our information;

Hormonal-therapy-for-prostate-cancer.

Radiotherapy for Prostate Cancer.

I hope the above helps. Whatever treatment route you go down there will be side effects and they will affect you both.

It would help us to help you if you add some details to your profile - journey to date Gleason Score TNM Score and PSA results. To add to your profile on your home page click on the computer screen - top right, then profile, then edit. Once you have written something don't forget to save it.

Ask anything you want - nothing is too trivial and you will get honest answers here.

Best wishes - Brian.

Hi Blueman,

I am sorry that cancer has led you to this forum and I so hope you get good news from the bone scan.

The first piece of advice I would give is read loads on this forum.  There is tons of good information from those who have been through the mill.  My prostate cancer (PC) journey started in March 2024 and initially I was given the choice of hormones and radiotherapy or the operation to remove my prostate.  Once I made sure my team knew that I have Ulcerative Colitis then my choices become operation or nothing.  So, please make sure your treatment takes into consideration any other conditions you may have.  Hopefully you have no others but if you do then never assume any health professional knows it despite how many times you tell different people.

The next advice I would give is slow down and give yourself time to get your head around the diagnosis.  I had the operation in June 2024 and in November 2024, I was recovering well but then I hit the wall with my mental health.  Having read loads of other's journeys I can say this is a common experience.  I was lucky as I had asked for some help from psychologist via the NHS and that therapy started just when I needed it.  Sadly in my trust such professional help is over a 9 month wait, so you might want to ask for help now.  The therapy helped me to deal with the life changing permanent changes to my body, especially the loss of the ability to have natural erections.  This may not happen to you but its worth asking - if I have the prostate removed will you have nerve sparing surgery - if its not nerve sparing then its almost certain you will also have to deal with the loss of erections.  I can't talk about the journey for those who had hormone treatment, but hopefully someone else will give you more information on that route.

There is a lot more I can talk about, but I want to finish on a positive note.  There are loads of people on here who have survived PC for a decade or more.  It is not a death sentence and you can overcome it.  My two years since the operation have been very magical and the experience has taught me to treasure life even more.  I am not out of the woods as sadly my PSA scores are climbing and it's possible I have spread, but I refuse to let my life be ruined.  I hope you can find that same place and make things as magical.  You mention your wife and please don't forget this journey is going to be hers as much as yours.  My wife has been vital to help me have that positive attitude and she is the best medicine I was ever given.  

Brilliant 

Thanks for this Paul. I have made a note of mentioning other conditions. My wife is amazing and it’s our strange journey together. She is amazing. Have the bone scan later this week, then back to the Consultant.

Hi Blueman

I agree with Millibob, once left the gland go for the Radiotherapy which will include HT for a while .

Don't think they give HT with surgery but could be wrong there.

Anyway fingers crossed not in the bones, U don't give any PSA figures or a Gleeson which can help 

best wishes 

Steve 

Hi Blueman ,  Welcome to the community. Sorry to hear about the diagnosis.  There will be more knowledgeable people who will be able to give advice. It would be helpful to know what diagnosis test s you have had and what the results are. It sounds as if you have yet to have all your tests and so it is hard for the medical team to give clear direction. They will do once they know the full picture.  Totally understand the feeling of loss. The waiting for tests/ results / plan I have found to be the worst part and frustrating, I think everyone here will agree to that.  The medical team will be doing their best to get informed so that they can advise. Even now when i have a full diagnosis , plan and date for my chemo I still ask " So what does this really mean ,long or short term.  the reality is they don't actually fully know until they see how the full suite of treatments is working  There is a great amount of information available here , or MacMillan or cancer research . Personally I try and keep any reading just to those 3 sources to stop me going down too many rabbit holes. The forums are great and full of really empathetic and helpful people.    

BTW if you look at peoples profiles they usually show their journey which is really useful. 

Thanks for your post oldierob. I have just read your profile (I haven't seen it before). Just thought I would pop on with a thanks for filling it in - it helps others as you have said, and I think your NHS team have done well for you in such a short space of time.

Good luck with your treatment.

Best wishes - Brian.

Hi Blueman

So sorry that you are here with us, but it is a great group of people who have a very wide base of knowledge and experience.

I am in the treatable but not curable Gleason 9 club, along with quite a few others! If you click on our picture or name you can read our story.

I am nearly 12 months in now, with the blood test last July/August setting me along this path…

I was seen by a Clinical Nurse Specialist who then referred me onto an oncologist, but as soon as I saw the CNS I was given hormone treatment to stop the testosterone influencing the cancer.  I was soon put on a triplet therapy pathway which combines two hormone therapies and then chemotherapy. Not beating about the bush - I found it quite exhausting but managed to control the fatigue by exercise to some extent.  It can be a difficult process, your life is taken over by it and then it all comes to a stop - no more chemo (I hope) .  I got though it like many others.  But I will be on hormone therapy for life, and that is going to be a bit of a challenge.  

The fatigue is the main issue, but exercise does help.  I lost my hair through chemotherapy, but the HT has stopped my beard from growing!! Positive side is no need to buy shampoo and I am saving a fortune on razor blades!!!! Just about hanging on to my moustache though ( only had it about 50 years ).

libido is a complete loss, and I am shortly going to see another CNS about ED side of things.

This is a couples disease and some find the personal affects difficult to deal with.  Your other half is the secret weapon in your armoury to recovery and they will be struggling too - so make sure they are supported whilst giving support to you.  Good friends/family/neighbours all can play an important part in the next phase. 

Some folk find it difficult to talk about to others, but it can be very rewarding to have conversations here or face to face.

Best of luck with the next steps, let us know how you are getting on and if you can fill in your own profile.

All the best 

KrisPy

And forgot to mention the brain fog and the forgetfulness!!!

and the bit about getting quite emotional at times - the HT messes up a lot of things

oh and the hot flushes….

Not trying to make it sound bad - it’s not after you get used to it all!!