Got results and part of treatment plan today now feeling very low.

Hi 

I’m both new in here and a wife so very much finding my feet so thanks for your contact   . This is the second time for us having done well following Kidney cancer in 2018 and just starting to breath again post 5 years 

To have the sickening stomach feeling ( you will know what i mean ) is overwhelmingly at times at a new PC  diagnosis 

So my soulmate is Group Grade 5 Gleason 9 . It’s been a slow reveal as his PSA was 7.2 at the onset so we were forever hopeful but it’s not to be !!

There is spread to pelvic  lymph nodes and we just found out another area of concern around the bowel/ rectal area currently under investigation following CT 
By some miracle there is no bone spread 

So started on hormone therapy biclutamide initially and zoladex due to swap over in January , then hopefully radiotherapy 

So currently exploring 2nd generation HT etc etc 

Wishing you well and thanks again 

Hello JET5  Always late to the party - but a warm welcome to the online Prostate Community - we are a friendly bunch as you have already discovered.

I am so sorry to find you here -especially with your soulmate being a Grade Group 5 and a Gleason 9!!  But there's hope - there are new treatments being introduced all the time and we have community members who have started on the new "Triplet therapy" and are thriving on it.

As a Community - OUR community we are here for you - we have members who have "been there - done that" so feel free to ask questions and just join in - we all have one bond - Prostate cancer - and one aim - to get the better of it.

Best wishes - Brian.

Hello JET5 and welcome to the community, I am so sorry to hear or your husbands diagnosis and can remember what a stressful and overwhelming time it was  i too have advanced PCa  with spread to iliac/pelvic nodes, It's great news it has not spread to the bones, but as i am not having RT-SABR x 5 or abiratone and know only a little about them, i cant really help, but i am certain others on the forum will be able to. please take care, Eddie

 Good morning to you, and thank you i am well, I don't think we are having a Greek weather day but it is an unusually nice, leave the coat at home, day, coffee by the sea sounds nice, i hope hubby feels better soon and thank you regarding tonight, i have done a few speeches and training courses before but never in front of 200 people. Hope it makes a difference. take care, Eddie

Hi Eddie,

Enjoy the day in Yorkshire and you will do amazing tonight in front of 200 people!

Lots of love

Dafna

Thank you so much Dafna, I hope the sun is shining in Brighton, please take care, Eddie

Hi again JET5.

What you are going to find on this journey is that the treatment plan is tailored for each person, no matter how much we may prefer one drug over another or say radiotherapy over chemotherapy. The Bicalutamide acts very quickly and is given to prevent tumour flare which can happen with the first Zoladex implants but gives you time to sort out your treatment path. Good news that there is no bone spread but the hormone therapy can result in bone thinning so make sure that your husband is given Calcium and Vitamin D tablets - get a prescription from your GP.

Can I suggest you check with the experts whether your husband is classified as a PSA secreter. My husband had the same problem that the PSA did not indicate that he had PCa and his particular form means that we cannot rely on the normal methods of the PSA test to monitor him. Instead he has 3 monthly MRI scans plus an occasional CT scan to check the rest of the chest and abdomen.

I don't know anything about kidney cancer but another issue my husband has is that he lost some kidney function at the start of this journey which means his creatinine level is higher than normal and has a reduced glomerular filtration rate. Because of this we have opted to have MRI'S and CT scans without contrast - sorry if I am teaching my grandmother to suck eggs. 

Please keep us updated on your journey and come back with any questions.

Hello and a very warm welcome to you.