Prostate Cancer Gleason 9

Prostate Cancer Gleason 9

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16 posts since

6 Feb 2020

Hi all, 

My uncle has been diagnosed with high risk, locally advanced prostate cancer. His Gleason score is 9, it is T3b, and his PSA is currently 132. 
In terms of spread, he is M1a – it has spread to lymph nodes and nerves but not to bones or organs. Doctors have recommended chemotherapy and he is currently on hormone therapy. He is 51 years old. 
I just feel very scared and I would really appreciate speaking to someone who has had prostate cancer, especially of a similar score/category. I want to understand how “bad” this is, and if I should be hopeful or not. While I am probably looking for reassurance, I also would like to know the reality of what to expect. 
So many questions run through my mind…does he only have five years, is this terminal, can be ever be in remission? 
 

I would really appreciate the stories of people who have been through this. 
 

thank you so much 

865 posts since

3 Dec 2019

Hi qwerty my prostate Cancer went to lymph nodes, spine, ribs, pelvis and a lung gleason 8 stage 4 psa 1581 T3B  N1 M1B I was diagnosed Feb 2016 straight onto hormone therapy (decapeptyl) then chemotherapy (docetaxel) been fine since kept working, had to retire to look after my disabled wife she needs 24 /7 care she has Alzheimers and parkinsons. Oncologist usto call it uncurable its now called palliative care,. Any questions please ask.???. Billy 

16 posts since

6 Feb 2020

Thank you so much for your reply. I really appreciate it. 
May I ask please if your cancer has spread since your chemo and hormone treatment? Or is it under control? 
 

Also was chemo very difficult and how long did it take for you to recover from it? Is there anything you think family members can do to help?  
 

Thank you so much for helping me during this time. I am really happy to hear that you are doing well and I pray you are long kept in the best of health. I will keep you in my prayers  

865 posts since

3 Dec 2019

Hi qwerty my cancer hasn’t spread its actually receded slightly. My psa count went down to 0.03 it took two years (Feb 2018) lowest since then it’s slowly rising last blood test Oct 2019 it was 2.2 oncologist wants it to get to 20 before more cemotherapy.

Cemo wasn’t nice i was fine first 4 or 5 days then it hit me (i have stomach problems) started being sick all the time luckily it went off before next session (3 to 4)days, it continues like that. Most people only feel sick unless other med problems. A few aches and pains but manageable, hospital should give meds to help with it. Hope you’ve got or can get a good thermometer if he gets a temperature phone them up. After chemo i was back at work within a week, metal welding and fabrication muck and dust everywhere., oh when I felt OK with cemo i went to work (something to keep me occupied other than cancer., if he can keep busy it really helps.. Main thing is be careful of anyone with any colds or bugs.

Hoping that helps if you want more information welcome…………. Billy 

16 posts since

6 Feb 2020

Thanks so much. This is all very reassuring. 

How long was your chemo for? It’s great to hear that you went back to work and have been living a normal life, I am so happy for you and I hope you are long kept this way.

Have your doctors ever spoken about chances of it returning or given you any kind of talk on “how many years you have left”? I suppose my fear is that he only has a few more years left or that there’s a definite time frame that he has now…or do the doctors tend to say that as long as your PSA is low and there aren’t any signs that the cancer is spreading, that it’s all fine and there’s no reason for it to shorten your life?

 

thank you so much once again. You have no idea how much reading about your experience has helped to lift a weight from my heart. Thank you.  

 

865 posts since

3 Dec 2019

Hi qwerty, to start with they said five years, but that’s completely wrong. I had 6 sessions of cemotherapy one every three weeks. Grandson took me for the first one with not knowing if i was going to be OK after., i know I’ll need more chemo sometime when psa rises again also chemo will help to keep other cancer down. Don’t forget I’ve still got cancer it’s just under control i call it my uninvited guest, Glad to help. If i can help anymore don’t worry please ask………..

Billy

P.s oncologist reckoned I’d need more chemo before a year was out still not had second sessions yet and very nearly four years have passed. Hope things go well for your uncle. 

16 posts since

6 Feb 2020

Hey billygoat, how are you doing? I just wanted to check in and say thanks again for your comments. They give me hope. How’s your health been? 
 

My uncles chemo will start on the 18th March. I’m really praying it’s effective. One thing we’re quite puzzled about is that everyone kind of says that prostate cancer isn’t that bad (that it’s one of the “better” cancers) but then at the same time seems very negative (it’s not treatable, it’s high risk, etc etc). We’re not sure what to make of this I guess…like how worried should we be? 
 

thank you again.  

865 posts since

3 Dec 2019

Hi qwerty if your uncle is having cemotherapy it is treatable, but probably like mine not curable. Remember you can live with it.

I’m just getting over a bug, nothing to do with cancer, but my immune system doesn’t work properly so i struggle a bit. 

Glad your uncle is finally getting treatment. Hope things go well. 

Lovely to hear from you again was hoping uncle was still OK.

Billy xxx 

16 posts since

6 Feb 2020

Hi Billy, 

it’s a pleasure to hear from you again. Yes that is what the docs have said – it’s treatable but not curable. 
 

We got some bad news again today. It has spread to the lungs and the lymph nodes around the lungs. I’ve been reading online and it says the prognosis for this kind of cancer is around 20-30%, which is making me panic and my mum (his sis) is devastated (my grandfather had lung cancer and she was with him throughout that so this hits her even harder). I am not sure what to make of it really. A part of me thinks, we need to love each day, one day at a time. But another part of me really hurts so much and the fear and worry is really very much there. I just really hope he turns out to be like you and five years later is still doing ok. 
 

I am really happy to hear that you are doing ok. It’s gotten quite cold so maybe that’s why you had a bag –  do make sure to take care of yourself, especially with Coronavirus now on the horizon. I will keep you and your wife in my prayers. Thank you for being someone I can speak to. You have no idea how much that means xxx

865 posts since

3 Dec 2019

Please don’t read online it’s always gives you the worst prognosis (that’s a very big word from me) and it’s probably out of date, treatment changes monthly sometimes. Hope treatment works well.

Best wishes. Billy xxx 

16 posts since

6 Feb 2020

Thanks Billy. You think there’s still hope right, even though it’s spread to lungs? 
 

it’s hard to get anything positive out of doctors…they always only give you the worst case scenario.

865 posts since

3 Dec 2019

Hi qwerty don’t forget i had it on one lung, it depends on how much, a small amount chemotherapy should get rid easily if i remember right his lungs were clear earlier so it can’t have been there long so a good chance to clear it up. Please try to be positive you seem to think worse case every time, 

Hope you are looking after yourself as well. 

Billy xx

P.s from being diagnosed to start treatment i was four months, that includes cancer in the lung. 

16 posts since

6 Feb 2020

Oh ok…it’s in both lungs and I think has spread quite a lot. I haven’t been able to look at the report yet but been speaking to my sister who has. The earlier scans didn’t cover lungs – he only just had the scan that looks at lungs, which is why we didn’t see it before. 

thanks for your reassurances. I suppose because this is all so new, it just frightens you and your mind goes to the worst. 
 

thank you – I hope you are taking care of yourself as well and your wife is doing ok xx

 

865 posts since

3 Dec 2019

Hi were managing OK. Just trying to figure out why they didn’t do a full body or at least a torso scan it would have told them everything. Hopefully cemo will still work. Keep positive please.

Please let me know how things are going thinking of you both. 

Billy xx 

16 posts since

6 Feb 2020

They did do a full body one before, but I think this doesn’t show on that one until a specific lung one is done? I’m not sure myself, but will ask. 
 

Thanks Billy, I’ll keep you updated. Please also keep me updated on your own health. Am also here for you to talk to if you ever need it.

 

thank you x

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