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

[@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 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 

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 

[@Billygoatt]‍ 

Hi - just thought I'd say hello and see wlhow you're getting along?

All the best,

Matthew

Hi Mathew, managing ok resting more often than usto, still keeping garden tidy and the house. 

Being back on enzalutamide lowered my energy levels and puffing like an old steam train after doing anything least strenuous including walking, very annoying as i usto walk miles and was very fit (even if i say so myself)usto have a good 6 pack now it's flabby, i always usto be 10.5 stone for over 50 years. With treatment i went to 13 had a job reaching my feet, tummy in the way im 11.7 now but would like to loose more. Im talking to oncologist next week about enzalutamide which is causing problems. Including hot flushes weight on and plenty more. 

Chemotherapy made my memory terrible (chemo brain).I'm also under endocrinologist for other problems (Addisons)adrenal glands don't work so permanent meds to stay alive, only enzalutamide interfered with blood results so I've 2 specialists trying to figure out what to do next, and im in the middle could be interesting. 

I'm still positive even though few bumps in the road. 

I was originally given 5 years max it's over 6 now, main trouble is tiredness. Need a sleep in the day. Just not me that usto keep going. 

I can still remember my 65 birthday in hospital because of alot of bleeding from back passage, laying on my side legs bent having a camera pushed up same passage to see it it was cancer, specialist took extra photos for me especially for my birthday of the a lovely circle of hemorrhoids like petels of a flower. Didn't have hemorrhoids until started chemo. 

I keep reading your and jellies stories, it's nice to have others to talk to about things. 

Remember keep positive and sure. 

Billy 

[@Billygoat]‍ ‍

Good to hear you are still trucking on.  Getting back from 13 to 11.7 is a good achievement.  I'm also 10.5 stone and just starting ADT so lets see... 

[@Matthew2022]‍ 

My latest news is that I went to the medical onco last week.  On the way in I told my wife it was just going to be bad news so be prepared.   Anyway he wasn't aware of my biopsy so when he checked it on the system he said it was clear.   Wasn't expecting that.  He then calls the radio onco and they agree that I go on ADT (1 month Bicalutamide with a Decapeptyl injection).  He will then review in a month's time to see what they do next.   They will do standard pelvic salvage radiation but he said they might do chemo first given my age.  He also said they might add abiterone to the HT if I am tolerating the ADT.  

So I'm still looking at 2 years ADT, pelvic radio, and possibly chemo.  But at least there is some possibility of shaking off this darned disease. As he said, they will give me the benefit of the doubt and I'll guess I won't find out until 2 years down the road when I come off the ADT. 

Hope you are all keeping well. 

[@Jellies]‍ 

That's fantastic news! I admit to feeling apprehensive waiting for the update. I'll check the notifications settings as I thought I'd receive an alert once you posted. I thought I'd double check and here we are. Hope springs eternal. All things considered, this is really positive. 

My scan results are still overdue, I'll keep you posted. 

We moved house after over 18 years last week. All part of the financial planning aspect of our new normal. 
 

All the beet,

Matthew 

[@Matthew2022]‍

Hi Matthew

Hope all well.  Latest update is confirmed Taxotere 6x3 infusions to start on 25 November.  So going to take a weeks holiday next week.

My latest PSA is 0.57.  This is after 6 weeks of ADT and 4 weeks since Decapeptyl shot.  My previous reading about 8-9 weeks ago was 0.83.  So no idea if this is good or bad but I suppose a reduction is generally good.

How are you getting on?  Any tips for getting through chemo.  Trying to figure out in my head how long I can continue working for?  Will I get able to go to the gym or just far too tired?  I guess for some of this will just have to wait and see how I feel at the time. 

Wishing you are your family well in your new abode.  Fair play to you being so proactive and with a bit of luck which you well deserve you will be around for many years yet to enjoy it. 

Rory

Hi all after stopping enzalutamide again and feeling alot better for 2 months despite psa going over 10. I started with back pains, called oncologist and explained that i had back problems when i was working carrying and moving steel plates about, but they insisted its cancer so another ct scan and bone scan to confirm, then told radiotherapy so on the day im ready, told im having another ct scan and tattoo to mark where RT to hit, that's this Friday. Then see oncologist Friday as well. So much for retirement and taking things easy. 

Wondering what oncologist will tell me about psa and treatment. 

Billy 

Hey Rory [@Jellies]‍ 

Great to hear from you and even better to see your PSA levels being kept well and truly at bay. Must be a great relief for you and your family. 
 

My PSA rose during and after chemotherapy. Trying and succeeding to not panic. Here are my results and timeline, what do you think?

61  - 9 Feb diagnosis 

4.3 - 30 Mar (HT started 4 Mar)

0.67 - 5 May (Chemo started 9 May)

1.3 - 17 June

1.1 - 27 July

0.91 - 7 Sept 

1.3 - 12 Oct  (Chemo ended)

1.5 - 18 Oct 

1.2 - 26 Oct

1.3 - 2 Nov

i am told that chemotherapy can sometimes cause fluctuations and increases in PSA but I guess time will tell. You're right to assume that everyone's chemo experience will be different but i would expect the cumulative effects to increase as time goes by. My last three infusions and 6 weeks after finishing were the worst. Fatigue, brain fog, sleeplessness and general aches steadily increased. The weight gain was staggering. You may need to forewarn at least your colleagues that you may need flexibility or more time off which may increase as the treatments add up. Gym attendance was nonexistent for me until the week before last. You may well feel stronger than I did.  I did manage to go for long walks at least once a day, often twice, in the first half of treatment. Adter that it became hard to walk as far and work...so I reduced both to suit. I've only just got back into full time and productive work. 

Radiotherapy starts a week today, 20 fractions every week day until 13 December. Hoping that it'll drop my PSA down below 1 again. I hope it doesn't set me too far back in terms of work and energy.

We're very happy in our new spot in North Yorkshire. That's a relief.

Let's keep each other posted. And remember, if you need anything, just ask. 
 

M

Hi [@Billygoatt]‍ 

A hormone treatment holiday sounds wonderful but the new aches and pains is always going to rattle the cage. How is your wife and are you still coping as her main carer?

Please let us know what happens next in your epic journey with this, as I think you have said before, uninvited guest. 
 

All the best!

M

Good luck with the RT Billy.  It will be further down the tracks for me. 

Sounds like you are really buying into the concept of active retirement if you are out and about moving steel plates around. 

Thanks for that update [@Matthew2022]‍

Sounds like Feb-Apr could be a write off but hopefully OKish up to then. Were you on steroids for the treatment leading to weight gain?   I was told today I would not need steroids (prednisone) but would some sort of injection to help bone marrow health and help fight infection.   Also to take Dexamethazone before and after treatment.  Plus other anti nausea and anti ulcer medication.  Quite the shopping list.

Ref PSA.  Honestly I have no clue.   In 1 month of HT yours went from 61 to 4.3 but mine went from about 1 to 0.53.  No idea what that means so not gonna worry about it now. With my data science hat on I would say your PSA has been basically flat since June.  I've seen some reports that chemo can make it fluctuate a bit and hopefully the RT gives it another whack.

I hear Yorkshire is really nice.  We're in Dublin but my wife's sister lives up that way in Ilkley.