Aggressive prostrate cancer and on pelvis

Hello MikeT 

A warm welcome to the online Prostate Community - I am so sorry to find you here but we are a good bunch.

I think a little bit more information would help - diagnosis TNM staging, Gleason Score and initial PSA would help with details of your cancer journey to date.

I have had the lymph nodes on my pelvis treated with radiotherapy - with a view to being "curative" - you can read my entire journey by clicking on my avatar. If you have any questions please feel free to ask.

Best wishes - Brian.

Hello Again MikeT 

One of our Community members has just had issues on his pelvis and here's a link to his blog.

 The Tests, Diagnosis, Treatment Options & Start 

I hope this helps.

Best wishes - Brian.

Thanks Brian

my Gleason score was 9, can’t remember or even know what the other’s are, sorry 

Ive been told I’ll be giving chemotherapy in the form of a tablet, not sure how this will affect my day to day life, home and at work, although I’m 66 In August and could retire.

Ive read with a score of nine, there is only A 30 something chance of getting through this

Hi MikeT 

No problem - I am going off line but will respond in full tomorrow.

Best wishes - Brian.

Evening Mike Welcome to the forum and sorry you’ve had to join us,although my diagnosis isn’t as serious I know how your feeling and an anxious time for everyone somebody more experienced will be along shortly to clarify things but in the meantime try to keep positive and not worry too much if that’s possible,this forums a life saver and comforting to us all Robert

Hi MikeT

Good evening and welcome it's great to meet you today sorry that it's under these circumstances!!!!!

Yes I was diagnosed last June 2023 with Terminal Prostate Cancer with a PSA off 1000+. 

I have been on Hormone Therapy since & my PSA has now dropped to 0.9.

Chemo was mentioned initially but the consultant thought that I wouldn't be strong enough.

I have had a Stroke & Brain Surgery previously leaving me in Chronic Pain and wheelchair bound.

Things seem to be working very well currently with just the HT as the PSA is at a better level & I am still able to have a good quality of life.

Please please come back to me if I can offer you any further help/info???

Prostate Worrier.

Hi Mike,

My partner had Radiotherapy to the pelvic area is that what you mean? Not chemo though, he has HT as well. Were you told it was in your pelvis? Can you remember anything else that was said? Do you know what your original PSA was?

L

Thanks prostrate worrier

good to meet you too

Hi Barry

i can’t remember what my PSA was sorry 

yes i think it was pelvic area I think , to be honest i was trying to remember everything but after they put the phone down i forgot most.

im on HT implants And been told I’ll be going on chemotherapy tablets 

It’s not curable but how long can I expect to have

Hi Mike,

It sounds like you've not had a good time, especially having a very important meeting on the telephone. You really do need another call or meeting to clarify what's happening. Have you been given a number you can call, a nurse? The trouble is that the whole thing can be really overwhelming and it's a good idea to have someone with you taking notes. You can also go to the top of this page and "Ask an Expert" to talk to a MacMillan nurse about whats happening. My partner is also not curable but he is 'treatable' take a look at his bio by clicking on the avatar. As for how long, hopefully with medication it will be a long time, Treatment is very good now and men tend to live a lot longer than they would have 10 years ago. There's lots of people here that have hormone therapy and Chemo and have many years ahead of them . you say you've read that with a gleason score of 9 you have a 30%?? Millibob who will come back to you is also a gleason 9 and he is on a curative path . He's going to be getting 100% of living, so you do have to be careful what you read and need to look at things like cancer research or prostate cancer UK for up to date info.

First things first, probably talk to the nurse here or phone the number you should have been given to have a chat. if it's on the phone have someone else with you to take notes. Any other worries come back and ask and hopefully someone can help more. 

Best wishes L