hey Mathew,

just thought i'd ask how you were

i came on here roughly the same time you posted originally,and i've been following the updates

i had a prostatectomy 3rd of may,and i'm thankfully over the worst,,although i've had a few complications on my journey

as its been a few weeks since you've been on ,i'd like to think your coping,and trying to keep your chin up

i've been lucky,and i've often thought about you and how you were getting on

so,,,,,,,how are you ?

Hey hey everyone, 

Really appreciate the message. I've been meaning to swing by the site for a while. Very interested to hear how you are all doing. 
 

[@dryden1407]‍ - glad you're getting there my friend, although it's not been straight forward. These things in our world rarely are I'm learning. 
 

As for me, I'm just about to start my last of six Docataxel chemotherapy cycles. Other than a bad reaction during my third infusion (it was rather painful and dramatic) I have responded very well it seems. The hot weather combined with the hot sweats, for me at least, remain an uncomfortable part of the process. I hope this is more a feature of the chemotherapy than the HT. My psa on diagnosis was 61 in March and the last readings some weeks ago was 1.  
 

Mentally and emotionally we're in good shape as a family although of course we have our moments given the stage 4 prognosis. We've sold our home of 19 years just at the right time and move next month so that's a massive change with ooadstof work associated with it. Still working as best I can. Need to figure out how things will pan out when I start radiotherapy next. 
 

how is everyone doing? 
 

wishing you all the very best!

Hi [@Matthew2022]‍

Just coming back with an update as up to now there was not much to report.  Have been thinking of you though. 

After my operation all my histology looked promising.   Negative margins and I had 8 lymph nodes removed and they were clear.

However my 6 week post-op PSA was 0.62 and a couple of weeks after that was 0.8.   Not great to put it mildly.   So a PSMA scan was arranged and the result of that showed two positive lymph nodes in my Pelvic area.  I also did a PSMA scan before the op and apparently that was clear. 

So I've been referred to oncology and have an appointment on Tue week to see what the next steps are.   I gave them the discs of my pre and post surgery PSMA scans to compare.  My understanding from the urologist is that it will likely be some form of SBRT combined with hormone therapy.   I suppose all will be revealed in a couple of weeks. 

Apart from that I am almost 100pc recovered from the surgery (apart from ED)  and feeling really good.   So it is a pain to be dragged back into the whole treatment process again.   But it is what it is... 

Hope you and yours are keeping well.   Good luck with the radiotherapy -  is that for the whole prostate or targeted? 

Will keep you posted on my situation as I get any updates. 

Take care

Rory

Hey [@Jellies]‍,

Great to hear from you, have been thinking about you and yours too. Very sorry you're having to go back into the ring this time for oncology treatments. You're in good shape and doing well, very well it seems, plus the potential  targeted SBRT is renowned for its effectiveness. Systemic HT isn't alot of fun but that too is very effective for the vast majority. Lots to be positive about but still a bummer. 

My radiotherapy is to the prostate itself and possibly the surrounding area but won't know for sure until for the radiotherapy planning session in a few weeks. My last PSA was 1.0 a number of weeks back so hoping my next blood test will see it drop further. CT scan results are due soon too so we'll see if the cancer is being held in check successfully or not. 

My last of 6 chemotherapy cycles happens on Monday which is good although oddly I have worried less during treatment than waiting for treatment. It's probably more stressful waiting to see if it's working...if that makes sense.

Hang in there Rory. Thanks for keeping in touch. You're doing very well and in expert hands. 
 

Very best,

Matthew 
 

Hi Matthew,

Just wanted to come on here and say I found your post back in June when my father was diagnosed with stage 4, Gleason 9 in incredibly similar circumstances - relatively young and no symptoms. He's just starting radiotherapy now and has been doing ok health-wise or as much as can be expected. Pre-diagnosis he was incredibly active and healthy so hopefully that is helping in treatment. It's so incredibly unfair for both of you but thank you for sharing your experience. Wishing you the very best.

Hello and thanks for reaching out. So very sorry to hear about your poor Dad although I'm glad he's doing comparatively well in difficult circumstances. Life changing for you all. 

Wishing you well, feel free to keep in touch. 

Matthew 

[@Matthew2022]‍ 

Matthew

Well done on getting through the chemo.  Am interested to know how it affected your day to day life.  We're you able to function as normal or was it a case of dialling everything back.  I have just gone back to work this week (work from home) and wondering if I'll be able to continue working through the chemo or better to take sick leave.  

My radio ongologist meeting did not go well.  He said that they identified 3 lymph nodes in pelvis and 1 in chest.  I am getting the one in my chest biopsied next Wednesday.   If that is cancerous (which I'm assuming it is) then I move to M1 incurable.  

In that case the plan appears to be SBRT to the lymph node mets, ADT, plus chemo.  I said my preference was to hit this thing as hard as possible to hopefully turn a corner with it for a period of time.  Am meeting the medical onco on Wednesday week so by that stage I should have a better idea where I stand and what the plan is. 

Take care

Rory

[@Jellies]‍ 

Dear Rory,

Such rotten luck, I really feel for you and yours. I am so desperately sorry to hear your journey has taken a turn for the worse like this. Of course, l know what you're going through. I'll do my best to help and support you if I can. 
 

First, ADT will change you and will impact your closest relationships in some ways. Apart from the common side affects of hot sweats, fatigue etc you may experience loss or reduction in sexual desire and ED. As you know, each of us will have a different experience. If you are confirmed with stage 4 you will probably be receiving this treatment for life. Will you be given a revised Gleason score? 
 

Next, chemotherapy (Docataxel) for me was manageable but challenging. A mix of steroids, hormone therapy and chemotherapy caught up with me during cycles 5 and 6 leaving me much less able to work effectively. Prior to that I managed just about to remain in the wheelhouse as CEO. That said, were I to advise anyone I would absolutely recommend you take sick leave. The problem with the treatment regime is that you will need to take each day as it comes and therefore that uncertainty will only serve to frustrate any attempt to schedule your time. That's no good for you personally (which is the main thing) and it's not good for your organisation. The whole situation, for me at least, caught up with me about 6 weeks ago and I very reluctantly had to accept the fact I needed complete focus on my healthcare and family so I delegated everything possible. 
 

If helpful I can share the details of my experience including research regarding the chemotherapy. Let me know. 

You have the same approach and mindset as myself. Hit it hard and fast. Because you're looking potentially at migrating from stage 1 or 2 to the dreaded 4, whilst self evidently horrific, does bring you some additional SBRT treatments that are not available to men like me who are diagnosed with metastasis stage 4 from day 1. 

You have this. From the outset you have exhibited the fighting spirit. There is much to be hopeful about with the advancement of innovative technologies but also, our relative youth amd fitness will help us handle the rigours of the regime ahead. 
 

Please let me know how you get along with your results. My wife  and I often speak of you. We're both rooting for you. 
 

Matthew
 

[@Matthew2022]‍

Thanks Matthew

Really appreciate the good wishes.  They are very much reciprocated. 

The different approaches to treatment are interesting.   Before my prostatectomy my urologist said that even if my PSMA were to show mets prostatectomy would still be the recommended treatment as it would deliver benefits down the line.   Looks like I'm about to find out if that is true.  My gleeson score was confirmed as 4+3 after the op. 

I am really not looking forward to ADT.  Yes, my medical onco said that if stage 4 is confirmed it will be ADT for life.  I already have ED from the prostatectomy but we have overcome that with injections and other "stuff" :-)  Net net we still have a sex life.   However, I'm worried about the whole loss of libido and how to counteract that and effect on our relationship etc. One thing we have done is myself and my wife have started training together with a personal trainer in a local gym.  My rationale is that even without testosterone I should be able to keep up with her at least and hopefully stave off some muscle loss.  Let's see. 

Ref chemo.  Might compare notes once I find out more.   Thankfully my work is not too stressful so I'll probably do what you did and try to keep going as long as possible.  I'm also assuming I will have the SBRT before chemo so not sure what the time lines look like at this point.  Both my medical onco and radio onco are professors in their area so no concerns on that front -  they can't work miracles but they do know their stuff. 

I'll let you know how I get on.  It sounds like you made the correct decision to look after #1 and your family for now.   It is a difficult mindshift to acknowledge other priorities when we have been on the treadmill of study, careers and progress all our lives.  Take care of yourself. 

Rory