Hi! I'm actually a therapy radiographer so I treat patients with radiotherapy. In my personal experience, PSA can vary greatly and it isn't a reliable indicator of prostate cancer stage or aggression. Some patients I've treated have had PSA over 100 but been early stage and treated well. I'm afraid until a biopsy and scans takes place, it isn't possible to get a good idea of what exactly is happening. Many patients find their PSA drops dramatically after starting hormone therapy, but your consultant would be able to discuss this with you in greater detail.

Wishing you all the best! 

Mathew,

Also sorry to hear about your results. You can battle through it with support and take each step at a time, it's a huge shock for you and family but there is support out there. One thing i've found is that i've not tried to hide it from anyone (work colleagues , friends etc) and without exception all have been sympatheyic and supportive - it feels like some of the load is shared.That may not be for everyone but however you handle it i wish you well,

Simon

Hi [@Matthew2022]‍ 

Just wanted to give you an update on my situation and keep this thread as a record.

I paid privately to get the PSMA scan done and the results of that did now show any spread outside the prostate.  The consultant said that having this scan as a baseline for future use if my PSA rises after surgery will be very useful.  As they will have something to compare against.

My treatment doesn't change and I am having open surgery next week - non nerve sparing including lymph node dissection.  I am lucky to have health insurance so was able to get the operation privately without a long wait.  The consultant and MDT were pretty definite that this was the appropriate course for me at this time.

The consultant said that my cancer looks like it is contained but it has high risk of recurring due to my high PSA.  The next step will depend on the histology post surgery and what happens to my PSA.   But he told me to mentally be prepared for follow up radio treatment about 6 mths after surgery.  Essentially he is aiming for a cure but there are no guarantees as the high PSA suggests some undetectable spread.

I know you are on a different path.  But I am thinking of you and your family and wishing you all the very best.  

Rory

Hi [@Jellies]‍ Rory,

It's really good to hear from you with an update on your journey!

Your clinical team appear to be giving you a truly excellent chance of a cure albeit I understand these things are stubbornly uncertain. Increased uncertainty is sadly a big part of our futures but I reckon you've good cause to be very optimistic. Let's hope your heightened PSA plummets and the post surgical histology results give you the break you and your family richly deserve. You've been through enough already never mind having to endure surgery (and the after effects). 
 

As for me, well, I'm holding it together as best I can. My wife and I are making the best of a pretty rubbish scenario and the kids are adjusting slowly but surely. I feel grateful for many blessings. I'm waiting for a second opinion but it's likely I'll be taking early chemotherapy followed by radiotherapy to the gland and SABR to my two metastasis (T5 vertebrae and pubic bone). I'm on Prostap HT injections or similar for life, the effects of which are no fun as we know. I appear to be responding quickly to the hormone therapy at least  - after 2 weeks my PSA dropped from 61 at diagnosis to 4.3. I'm holding the likes of Apalutamide, Enzalutamide etc. for later down the track. My Oncologist is really excellent in every way. 

As you say, let's keep this thread going for our mutual benefit and to help share information with the community. It means alot to hear from you - we've not physically met but we are brothers drawn together in adversity. 

I often think about you and your loved ones. Your path ahead is gruelling but there is much hope! Your attitude has been inspiring from day one  

Very best,

Matthew
 

[@Matthew2022]‍ 

You and your family have my total admiration and respect for the way you are working through everything.

I had my ORP last Monday.  I was rolled down to theatre at 3.30pm and expected to be back in my room awake by 8pm ish.  Just before I went in was chatting to the anesthesist and he said he had bloods ready in case I needed a transfusion because there could be a lot of blood loss.   

He was right because by the time I came round it was 11.30 pm and I was in the HDU after losing 2l of blood.  But I did just about manage to dodge the transfusion.  As a result I spent 5 nights in the hospital and took a bit longer to get my strength back.  Felt a bit like being hit by a bus for a few days.

Right now I'm recuperating at home and will get my catether out in a week's time.  Definitely getting stronger by the day.

Then it is a matter of waiting for the results.  The surgeon said the operation went well and here was nothing unexpected so it's a case of "fingers crossed".  I guess I'll have another meeting with him in 6 weeks or so when they have the histology results and I do another PSA test.  

Take care 

Rory

[@Jellies]‍ 

Hi Rory - Really good to hear from you. Whilst it's excellent you're getting on with life-saving treatment it's definitely not an easy ride by the sound of things. I hadn't realised an operation to remove a small walnut-sized gland could cause major blood loss. Not good. Glad you pulled through with your typical pragmatism and courage. I have a feeling you're going to contain this blighter and be cured. The thought of a catheter though gives me the heberjeebies. Roll on the next week when you can be released. The wait for your next histology results will be hard no doubt. 
 

My second opinion landed this morning funnily enough, confirming my start of chemotherapy a week today. Six cycles of Docataxel every three weeks followed by lots of radiotherapy. That'll take me into next year. The hormone therapy isn't much fun but relatively speaking I'm responding really well with little to no side effects. Many men have a tough time with things like fatigue, hot sweats, insomnia, brain fog, depression etc. Luckily I'm okay so far. 

The biggest challenge is adjusting our longer-term plans and dreams. Currently in the midst of career succession shenanigans (I'm a tech company owner and Chairman), financial and estate planning and even selling our home of the last nearly twenty years. We were planning on downsizing anyway so that's no major sacrifice. Having to free up funds to buy a separate superannuity for my wife as the chances of my reaching pensionable age is pretty remote sadly. 

All that said, I'm grateful for many things. It could most definitely be worse!

Stay in touch, recover fully and quickly my friend. 
 

Matthew

Thanks Matthew 

Funny enough you get used to the catether after a few days.  I'm told taking it out is easy...right... Isn't it amazing the sort of treatment we can take on board in an effort to tame this beast.  It is mind bending to think I could be sitting here cancer free, but no way I'm getting ahead of myself.  Current trajectory is radio in 4-6mths until the numbers show otherwise.

So glad you are coping with the hormone treatment.  God speed for the next installment.  It sounds like they are throwing the kitchen sink at you.  

I can totally understand where you are coming from with forward planning and providing for your loved ones.   It is quite the mindshift.  We are very fortunate in that my wife has a pretty good job and pension herself.  I'm also in tech with a US multinational and they have been fantastic.  Actually the support from so many people has been really humbling and uplifting.  

Rory

It's good to hear you're getting the support you need from all quartes [@Jellies]‍ including a supportive employer. The world is mostly awash with good people. 

Hope this finds everyone well. 

Update from me day 2 post Docataxel chemotherapy cycle 1 of 6. 

No discernible side effects other than day 1 I felt a mild Ready Brek glow sensation a bit like a raised internal nuclear reactor and slightly increased breathlessness. They went overnight and today I caught up with some work, walked a brisk 3 miles and spent another 30 minutes in our gym. Preparing now for work related video conferences this afternoon. Pleasantly surprised given I was warned to expect a handful of side effects by now but especially fatigue and sickness/nausea. I realise it’s early days yet and this treatment can be cumulative in nature. Long way to go.  

At DX my PSA was 61, following Zoladex injection in just 2-3 weeks it dropped to 4.3. A month later (last Thursday) it dropped to 0.67 so it’s heading in the right direction thankfully. 

Hope to hear how things are going for you all, as ever. 

Matthew

Hi Matthew. Thought i'd chip in a wee bit here. No idea if it reacts differently in males opposed to females, but my wife was on Docetaxel, and the one thing she was told is Docataxel doesn't tend to cause sickness/nausea. she was actually taken off the anti-sick meds prior to starting it as they said she wouldn't need them. She didn't. Whilst she needed them for the first type of chemo she was on (EC for breast cancer).

Something she did have a problem with when on Docetaxel was dry mouth and issues using mint toothpaste (it stung her mouth and gums badly). If you find yourself being bothered with your mouth, get a soft manual toothbrush. Not a medium firmness one, but a soft one. even a bona fide baby tooth brush is good. As for the mint, there's a toothpaste called Oranurse (sold by Amazon etc), and it's mint free and has no taste. It's made for people on chemo and people who generally can't tolerate mint or flavoured toothpaste for one reason or another. The effects of chemo tend to be accumulative, so if issues with your mouth do begin to surface, nip them in the bud quickly. It can stop you from eating, and even drinking.

Hello and appreciate your counsel. Sorry your wife is having to undergo chemotherapy treatments, hope you are both coping as best you can. 
 

I ordered the flavourless mouthwash (arrived today) which is, I agree, milder and should help handle infections and manage ulcers or gum issues. I've a soft baby toothbrush coming tomorrow. Thanks again. 
 

Wishing you and yours the best in arduous circumstances. 
 

[@Matthew2022]‍ 

Great to hear from you Matthew.  So good to hear that you are tolerating and responding to the chemo treatment so well and impressive that you are keeping work spinning at the same time.  I will be a few weeks from any gym work but also looking forward to getting back for the benefit of body and mind.

Spent the day in hospital today to get my catether out.  You pee and then they scan your bladder to make sure it is emptying properly.  Back home now and need to wear pads but hopefully that will improve over the coming weeks.

My consultant also dropped by and said results of my surgery were good.  Negative margins, clear lymph nodes and no adverse features.  He also said my cancer was not as extensive as the biopsy suggested and the 4+3 grade was unchanged.  The MDT reviewed my case today and said that with a bit of luck I should not require further radio treatment.  Of course I need to get my PSA in 4 weeks time and will be keeping my fingers and toes crossed for that result.  

Take care.  

Rory

Hey [@Jellies]‍ - this is very good news, I think you've got this. Whilst of course you're not totally out of the woods just yet but you can see the clearing ahead of you. 
 

Who'd have ever thought just a few short months ago all of this wasn't a thing. How things change. It's remarkable how we humans can pull things together and pull together. Family closeness and the support of friends and colleagues deepen. 
 

Hope you stop leaking soon and the monitoring of your PSA reflects exactly the views of your capable clinicians. 
 

Take care, thanks for the wonderful update!

M

Hey [@Jellies]‍ - this is very good news, I think you've got this. Whilst of course you're not totally out of the woods just yet but you can see the clearing ahead of you. 
 

Who'd have ever thought just a few short months ago all of this wasn't a thing. How things change. It's remarkable how we humans can pull things together and pull together. Family closeness and the support of friends and colleagues deepen. 
 

Hope you stop leaking soon and the monitoring of your PSA reflects exactly the views of your capable clinicians. 
 

Take care, thanks for the wonderful update!

M

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!

Morning Matthew,  im still here and reading plenty keeping up to date with things although problems keep cropping up, I've been on enzalutamide hormone therapy for a while now (it's given to men who want sex change) it stops male hormones which prostate cancer feeds on, but my chest (boobs)were as big as my wife and firmer and she was jealous. 

Side effects not really good lacking energy, hot flushes and more. My oncologist cut dose down when my psa dropped from 65 to 0.03 and things improve for a while, so she told me to stop taking them for 3 months to see if i improved which i did BUT psa increased so back on meds and feeling rubbish again, don't know what happens next I'll keep updating now and again, im keeping cool in this hot weather and managing ok so far wishing there were less repeats on tv eating and drinking well. 

Glad things aren't going to bad for you and others on this string remember keep positive and sure. 

Billy 

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