Treatment options for Gleason 9

Hello Moo66, it is good to ‘meet’ you but I’m sorry this had to happen due to both of us having husbands with prostate cancer and all the stress and anxiety that involves.

im really sorry that I can’t answer your questions from a personal experience point of view. My husband had a PSA of 10, Gleason 4+3= 7 T3a N0M0. He started on hormone therapy in November 2022 for 18 months  and has just complete 20 factions of radiotherapy. So the treatment pathway differs.

that said, I know there are people who post here who have or are going through similar pathways to your husbands and I feel sure they will respond in due course.

for me, the hardest part was getting through the tests and the waiting….waiting for appointments, for results, for radiotherapy. Alongside the waiting there was the fear of all the side effects of the treatment we were warned about. I know the professionals have a duty to warn patients about the side effects but our experience is that, yes, there are side effects but they don’t all happen and, despite them, life does continue !

I hope you get some better info from others and I do wish you and your husband all the very best on this journey.

Hi Moo - As Worried Wife says - I am not quite in the same boat as your husband but half way there!

I was original diagnosed as a Gleason 7 but turns out I am a Gleason 9 - I also had the diagnosis that the sods had spread to my lymph glands but oncology were unable to confirm this as the MRI was unclear so they treated me for it anyway!

I have been down the HT/RT route and you can follow my journey by clicking on the icon of the beach.

I am sure there will be someone on here who will be along to give you some more detailed information - but if you wish to ask anything of me feel free to do so.

Best wishes to you and your husband on your journey - Brian.

I would go with the first option. I had Enzalutamide which was effective but only worked for 7 months. I'm now about to have radiotherapy after 10 cycles of chemo but I regret not being offered radiotherapy earlier.

If you go with the first option you will still have chemo to fall back on as a second line of therapy. The side effects from the tablets are likely to be kinder than the chemo. 

However it might be worth asking about the different tablet options. They should help to dry up the cancer but you want the one that is likely to be most successful and long lasting.      

Hi, thank  you so much for your reply. 

Thanks for that Brian, i will have a look at your journey. The good thing is my husbands is very positive.

Hi, thanks for your reply, my husband will be having radiotherapy after the chemotherapy and also if he chooses the tablet which is Apalutamide. There are no other options at present. 

Hi Moo,

I was in a similar situation as your husband with spread to distant lymph nodes. Because  my diagnosis came in the middle of the pandemic, they recommended Enzalutamide plus RT within the first 6 months as an alternative to chemo plus RT ( they worried about the impact of chemo on the immune system ).  Enzaluamide is roughly equivalent to Apalutamide treatment your husband has been offered.  2 years later my PSA is undetectable so this combination is doing a good job for me at the moment and the way I see it, I still have the chemo option in my back pocket  when the inevitable failure of the current regime.

It is very scary in those first few months with lots of options being thrown at you, so you are doing exactly the right thing asking for advice and support, also check out Prostate Cancer UK - I found that very helpful in figuring out what was going on.

Stay strong and I hope whichever treatment option you and your husband choose it is as succesful as mine has been so far.

Steve 

Hi again,

I have just read your PC journey, i must admit when you said you rang the bell it made me quite emotional! So glad you are ca free. My hubby has yet to read the replies and your story but i am sure   they will make him feel better.

And that is half the battle - stay strong and positive, stock up on advice and as SteveB says it's scary in the first few months but things do get better.

Brian.

Hi Steve,

thank you for your reply. The consultant seemed to push more towards the tablets. Do you get any side effects from the tablets? Also you say the chemo is there when the inevitable happens, will it come back? i think this is the worry and why we are leaning more towards the chemo at the moment.