Dad just diagnosed with Gleason 9

Hi Spud, your diagnosis and treatment path (apart from Prostap for Zoladex) is identical to my own.  I am so glad you are doing well and long may it continue!  Good luck.  David

Hi MissM2024

Good afternoon I hope that you are both ok??

I don't know if you have managed to get your hands on some Gleason information??

We have got some on here if not & I will post the link below for you.

https://www.macmillan.org.uk/cancer-information-and-support/prostate-cancer#staging

Please please let me know if you want me to go through the information with you if that would be better???

Prostate Worrier.

Hi miss m 2024 my name is graham and I have had a 9 gleason for 14yrs .

It is survivalable yes been through the ringer still here radical prostermy radio therapy and lods of femail hormones still hear last sat went up to the top of st Paul's all 500 steps with a new knee as well honest it's not the end just the beginning  lots of love to you and dad ps I'm 70yrs old. 

David2017

Thank you David and I hope you are on the best side.

I get a lot of encouragement when people on here have time for each other and offer advice and comfort.

It is priceless and nice to do it back to others.

Take care and stay safe 

Spud

Well, an update for everyone here. Yesterday was one of the worst days of my life. Advanced Metastatic Prostate Cancer. It has already escaped the local area and into the lymph nodes. We have a meeting with the multi disciplinary team in 2 weeks time. who would have thought 4 weeks ago when this started with an elevated PSA we would be here now. 

Hi MissM2024 , we have all been at this point when the diagnosis hits you like a truck, but it does get better.  We know what you are going through. Best wishes and virtual hugs.  David

Hi David2017

Looking at your profile/history we do seem to be on a similar treatment Path as yourself.

I saw my Chemotherapy through but likewise started to struggle a bit at cycle 4 tingling in my fingers and feet, glad to say all back to normal now apart from my big toes that remind me now and again.

The oncologist said it’s a matter of learning to live with it.

I pushed on and it was slightly reduced for the sixth.

 I was told once that the chemo and radiotherapy was the result of a trial.

Always around if you ever need a chat, take care and stay safe

Spud

”You don’t know how Strong you are 

until being Strong is your only choice”

Bob Marley 

Hi MissM2024 .

We can relate to the worst day of our lives when we got the news of advanced prostate cancer. Instinct made us immediately think worst case scenario but here we are, 4 years later, and still going strong. My husband is also Gleason 9 but with spread to both near and distant lymph nodes. I have attached a link to information about it which will give you an idea on treatment options which will give you a good base to be able to ask questions at the MDT meeting. The type of treatment offered will be tailored to try and get rid of as much of the cancer as possible and prevent any further spread. Based on the information you have supplied I would think that an aggressive approach will be taken but most men tolerate it pretty well provided they have no underlying health issues. It is a good idea to have a list of questions and also maybe ask to record the meeting. It will be a pretty gruelling time whilst dad is having treatment but things do settle down and I am sure you are going to have your dad around for a few years yet.

Please come back if you have any questions, no matter how small or silly you might think them as we have all done it.

https://prostatecanceruk.org/prostate-information-and-support/just-diagnosed/advanced-prostate-cancer

Hi M , sorry to hear.

You say in the nodes , not sure if it's the nodes near to the prostate or spread  elsewhere in the body , quite an important point.  Has it also spread to the bones?

Even if in the bones I know not curable but people can live for many years using the latest treatments and also there are clinical trials that could be worth looking at at some stage.

Best wishes 

Steve 

Hi Spud Spuduknow ,  I had the hands and feet and was left with just my big toes feeling numb, same as you.  I think it most likely that the RT/chemo was a trial but for me it has lasted over 7 years so I am not complaining.  Currently waiting results of a CT scan and will then have a PET scan.  Next PSA is probably going to take me over 2.0 when I think Darolutamide is likely.  Just hoping no mets found from the scans, but waiting for results isn’t anywhere near as traumatic as at the start of this journey.  Fatigue is my main problem but I try to get 10,000 steps a day and a game of tennis once a week.  You are much younger than me, so should have a better survival rate.  Happy to chat anytime. Keep positive and best wishes David