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 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

[@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

[@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.  

Hey [@Jellies]‍ 

Yup, I reckon the steroids were the main culprits for weight gain. Since stopping I've managed somehow to shed a few pounds and rid myself of the so-called "round face ". I looked like a chubby chipmunk. 

Your data pattern comment made me smile. We both work in the same sector. Im always banging the data driven decision making drum. Well, until it's unhelpful and I resort to the trusty hierarchical method. Ha.

Hope your pill popping regime isn't too bothersome. You will likey do well, being younger like me we can withstand quite a battering.

Take care, you're doing really well!

M

Hi Matthew, 

I came across the forum as my dad has just been diagnosed with a case nearly the same as yours and panic stations have set in.  I was just after a update on how you're coping and how you're doing now?

Many thanks 

Tom

Hello Tom,

Firstly, I am so sorry to hear that your Dad has been diagnosed. The initial feelings of disbelief, shock and fear are of course very real but believe me, he and you will adjust. Many men can expect many years of life given the ongoing development of new interventions and innovations. 

This forum and others such as PC UK are excellent amd safe places to seek counsel and give/receive support. If you're comfortable, tell me about your Dad. 

As for me, I'm newring the end of 20 fractions of radiotherapy to my prostate.  I'm feeling positive despite handing the common side effects. PSA last time I checked was 1.3 and hoping the radiotherapy will knock it lastingly below 1 soon  

Hang in there.  
 

Matthew

[@Jellies]‍ Hi buddy, how are you and yours?

Hi Matthew  radiotherapy went fine, bit of pain hours after and tired for days. Started chemotherapy Monday, 10 sessions every 3 weeks. Lovely Christmas present.  Have to see what side effects hit me. Oh and I've some syringes to self inject from Friday boost my white blood cells, not sure i can do it yet. Nurse was supposed to explain what to do, but went off and i couldn't find her before i left. 

Have to see how things go. 

Billy