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 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 

Hi Billy - you're certainly going through an intensive period of treatments (I know the feeling). Best get back to the nurses and see what you need to do. How is your wife and are you coping with all her care arrangements? Lots going on. 
 

No doubt you'll approach this next phase with your characteristic fortitude. 
 

Take care. 

Hi Matthew,
 

Yes it was a massive shock to the system, as we was expecting the prostate cancer but not the spread. As time has gone on we have are slowly coming to terms with it. Just hard not trying to think of it all the time and my dad thinks his time will be up very soon, which I keep assuring him it won't.

Abit of back ground on my dad he's 54 and was weeing all the time. I tried for ages to get him to go to the doctors but wouldn't listen as he thought it was because he was getting older, it wasn't until he had a burning sensation he decided to go to the doctors.Where they did blood tests and his PSA came back at 53.3. So he got referred to the hospital where they done all the tests on him. We went to the hospital on Thursday where they gave us the news that he had prostate cancer and had spread to his pelvis and rib. The Gleason score was 4 + 5. They have started him on hormone injections and has been referred to the oncologist.

Did the radiotherapy and chemotherapy knock you about much? Me and my dad are self employed bricklayers and he's worrying about money and the amount of time he's going to have off. He has life insurance and critical cover which we will be sorting out soon so hopefully that will be able to take a weight off his shoulders. I know he likes being at work to so we don't want him to be lost without it, but it is what it is.

Really happy to see you're doing well and getting the results you want. Thank you for replying and I wish you and your family all the best.

many thanks 

Tom

Hi Mathew. All ok with my boss still gives orders daily and must be obeyed. 

I've found a neighbour who has injection same as me and going to show me what to do this evening.  So getting sorted finally. 

Carers are a laugh turning up anytime or not a all or just a phone call from there office saying is earlier or later ok. Simple answer no supposed to be set time. 

Luckily im still managing ok yet. 

Billy 

Hi [@Matthew2022]‍ 

Thanks for the check in.  Was just thinking of you and logged in so just saw it now. 

Did my first round of chemo.  Was pretty tired for about 4 days and by 8 days afterwards was pretty much back to normal.  I made sure to walk every day and four days after I went to the gym and got through a session even if a bit fatigued.  Myself and my wife have a personal trainer in the local crossfit gym and I find the mental and physical boost from pushing weights and making progress despite all the treatments really helps me.   This week I also came out to France skiing and head back today for the next round of chemo on Friday. Also hoping to come out in January if the chemo treatment remains tolerable. We'll see. 

My PSA came down to 0.2 on the ADT just before I started chemo.   The onco said that when chemo stops I will be also put on Abirarerone and the ADT treatment will be for three years due to the high risk cancer.  Although he said the decision of when/if to come off is for down the road.  Also radio will follow the chemo so gotta go and have planning scans in the new year. 

One day at a time.  Really hope you are all doing well and enjoy the Christmas break. 

Rory

Billygoat

I have the same injection.  It is called Neulasta. 

The Nurse came and did the first one for me and my plan for the next one is to look away and the missus can do it.  She did all my Clexane injections after my prostatectomy.

Best of luck with the chemo.  Hopefully you can get through it. We are both starting around the same time but I have 6 cycles.

Before my first cycle I had to take Dexamethazone tablets which made me feel dizzy and was slurring my speech.  Am hoping it's not as bad this time round. 

Rory

Hey [@Jellies]‍ 

Great to hear from you and learn about your recent experiences on this winding journey we're on. 
 

First off, getting your PSA down to 0.2 is tremendous! The best I achieved was 0.6 briefly before chemo started whilst on ADT. I'm hoping it drops to your levels now the radiotherapy has ended. I get tested in early January so we shall see. 

It's brilliant you're able to hit the slopes. Let's hope you can keep returning despite everything going on. Physical exercise is increasingly being seen as a significant aspect contributing to not only quality of life but overall longevity. I need to get back to it. 

Overall I'm feeling pretty good mentally and physically. The unpleasant/painful side effects from the zapping are reducing rapidly thanks to the prompt intervention of wonderful nurses. Disposable undies will be retired this week . 
 

My long standing serious illnesses policy claim with Vitality was denied on very spurious grounds. After studying my health records they saw I had two high ish blood pressure results and said I should have disclosed it. I was never treated because my blood pressure went back to normal. Also my GP said there was nothing to worry about. Their view was that effectively my policy was null and void from day one due to a failure to disclose accurate information etc. I will appeal. Very disappointed and fed up about that. 
 

It will be good to hear how you cope with the treatments and how life is, appreciate your messages very much. 
 

You've got this!
 

M
 

[@Matthew2022]‍ 

That is unbelievable.  No wonder insurance companies have a bad name.  Blood pressure readings are super unreliable so I find it incredible they could turn down your claim over that. 

But good to hear you are in good spirits.  I've found getting into the gym to be the best tonic for me so I'd recommend it.  Even better if you can get a trainer that knows your situation and can push just the right amount.  The guys I have are fantastic.  

I did my second chemo on Fri so still a bit zonked.   But all my bloods were good and my PSA was down to 0.07.  So at least that's heading in the right direction.  Hopefully my taste buds will have recovered a bit by the time Christmas Dinner comes around. 

Keep plugging away! 

Rory

Hey [@Jellies]‍ 

How are you keeping with everything and your treatments?

Been thinking about you. Really hope you're doing ok. 

Today is a year ago to the day my GP called to give me the PSA results of 61. The beginning of this terrible journey. 

Anyway, look forward to hearing from you when you're ready  

Matthew

Hey [@Jellies]‍ 

How are you keeping with everything and your treatments?

Been thinking about you. Really hope you're doing ok. 

Today is a year ago to the day my GP called to give me the PSA results of 61. The beginning of this terrible journey. 

Anyway, look forward to hearing from you when you're ready  

Matthew

Good to hear from you [@Matthew2022]‍ 

Just finished cycle 4 chemo last week.  Was completely exhausted for 4 days afterwards but starting to recover now and feeling much better today.   I signed off work in January till end of treatments so just focusing on getting through all the treatments and recovery. All my numbers so far are good and my PSA is now less than 0.03 although still a looonnng way to go with radiotherapy and 2-3 years of ADT ahead.  Went out and bought myself a fancy new ebike today and looking forward to getting out on two wheels again as the weather improves.

Quite the anniversary we'd all rather didn't happen. How are things going with you?  

Rory

Hiya [@Jellies]‍ 

Appreciate your swift reply, its good to hear you're pushing through. So far so good apart from the fatigue. I found day 4/5 after each cycle left me the same way. Normally I have good consistent energy levels so the decline felt really odd. Very wise to take the time to focus on your treatments and recovery.

I have started back at the gym like you recommended. We have all the Peloton gear (thanks to my gym fanatic wife) and I'm finding it motivating and effective. Feeling sore at times but overall increasingly stronger. Love the ebike purchase. What did you get? Did your wife get one too?

Your PSA level is brilliant! My last check was 5 weeks ago at 0.51. Oncologists were pleased and expect it to drop further as the radiation keeps radiating. I'm generally well and feeling positive. My wife is okay mostly but sometimes sheds tears worrying about me and fearful for the medium term future. It's hard to witness.

Lots going on. I'm about to start a legal challenge to the unjust insurance claim denial. Back to work full tilt. New house plan's approved after an appeal in January. Spending quality time with the people we love. Preparing for our daughter's wedding in the USA in May. 

Stay well, friend. Keep fighting the good fight. 
 

Matthew

[@Matthew2022]‍ 

Sounds like amazing progress.  Delighted you are finding Peloton is working for you and also back to work with some verve.  Really hope you win your case, 

I got a Riese and Muller Charger 4.  It's pricey but you get a good tax break on it here in Ireland.  Might get another one for the wife when I save a few more $$$ but we do have vague thoughts about cycling all the greenways across the country while stopping off in nice country hotels to enjoy the local finery.  But for now my immediate planned use is to get me up and down to the daily radio sessions instead of the car.  That was also a key selling point for the wife :-)

Good luck with the new build.  We are also doing up the gaff in France.  Amazing how cancer focuses the mind instead of just saving for "tomorrow". Well, now is "tomorrow"!

A few weeks back I brought my teenage daughter into hospital to do a tour with a consultant friend of mine.  I was just finished chemo and came down to meet her for coffee.  Well, the floods of tears from her caught me off guard.  She was completely distraught because she had never seen me in the hospital before.  Sometimes we can forget how much those around us worry while we are busy going from one treatment to the next.  It's very hard on them, but hopefully we will both be here with them for many more years with a bit of luck and all the latest treatments.

Take care

hey 

i just wanted to jump in here ,and let you guys know,how appreciative i (and probably a hell of a lot of silent others) are of the updates on your stories in the past year,,the little nuggets of info your sharing mean a lot,in the comparisons of my own journey

i was diagnosed around a year ago too,and had the full removal operation in may last year,my psa is due but last was 0.02,from a high of around 8 before my op

i think i've had it relatively easier than you guys with no chemo or radio etc post or pre op

if there's anything i can moan about really is the "still" worry of incontinence,there's been no embarrassing encounters, but if i do anything strenuous, i seem to leak a little

also,i've been on the full rainbow of different strength and variations of the blue pill,,the only success they have is giving migraine like headaches,fortunately my wife is more appreciative of me still being here rather than being upstairs

positives are that its been a year ,and,well,,,it's good to be more knowledgable,,and i'm certainly appreciative of the doctors and nurses who continue to be there for me

i wish you guys well,and all the luck in going forwards

and look forward to the updates

doug

Hi Doug, good of you to chime in and welcome to our little chinwag! I'm pleased you're getting something out of our posts. This horrendous disease is more endurable if we work together.

We three are all the same relatively young age (early fifties) so will undoubtedly appreciate eachothers journey. It looks like you're responding to your treatment pathway which must be a big relief. The issues down below are a worry and can have an impact on our relationships. I've faired pretty well but will be taking the blue pills daily to increase blood flow etc. Hope you can find away forward. And yeah, our partners patiently understand. This part of life has to be compromised to a certain degree to give us a fighting chance. Sigh.

Is that you on the dirt bike? Very cool . 

Feel free to share anytime and best of luck. 

Matthew
 

Thanks Doug 

So glad you had a successful op.  Getting my PSA of 0.5 after going through the op was definitely the worst single day of this whole ordeal.  So I wouldn't underestimate your success so far. With a bit of luck you have nailed it. If the blue pills ain't working the injections are worth a go and not as bad as it sounds.  

Rory

Hi 

I just wanted to say thank you all.

My Dad is at the start of his journey and awaiting all the dreaded scans/biopsies etc after a high PSA result. It's hell waiting. They have warned him they believe it will be advanced (psa / examination) and I've been so lost and sad having felt our life has been changed overnight. I want to be strong for my Dad and take this away from him but feel powerless and scared.  
 

I've just read all your messages from the start of your respective journeys and have been comforted by your positivity and courage. I just wanted to say thank you and wish you well, but also let you know that there must be many other silent people out there also finding reassurance from gate crashing your conversation like I have done. Thank you for helping us all. 

How are you all? 
 

[@sair88]‍ and everyone,

My heart goes out to you, your loved ones and of course your poor dad. The waiting is just horrible and all encompassing I know.

Sensing your love for your Dad and the pain you're experiencing floods my mind and soul with my own memories. It's just overwhelming isn't it. Having passed this way alongside [@Jellies]‍ and other fine people in this forum lends a perspective that can only come in time I'm afraid. Trust me, trust our collective voices, when we offer hope and encouragement. 

There is so much of life and love ahead for all of you. This period of likely diagnosis and initial treatment is not without its very real challenges of course, however, hidden deep beneath the surface are poignant lessons and wonderful moments. Families are fortresses in trialing times. My family and friends are everything to me, as I know they are for you. My kids at diagnosis last year ranged in age from 25 to 19 and whilst it's been bewilderingly painful for them at times, we're able to live our lives to the full. Your love and steady support will continue to be a source of strength I am certain. 

Being here in this horific situation is a terrible shock. PCUK is also a great source of knowledge and care. Avoid reading too much on the web though, stick to proven expertise from trusted places. You and he are always welcome here. You're amongst friends who truly understand. I have experienced a closeness and yes, love, from hitherto perfect strangers. They soon became important confidantes, mentors and friends. 

As you asked, 1 year in, I'm physically, mentally and spiritually/emotionally far better than I feared could be the case in the beginning. I have a set of tests and scans next week. This cycle of examination and waiting for results is my lot for life now. That's not a grumble. I'm incredibly grateful we live in a society where world class treatments are available.  Many are not so fortunate. 

Please keep us posted about how you and your dear father are getting along. 

Take care, thanks for reaching out. 

Bless you!

Matthew

Thank you Matthew,

You are truly inspirational and have brought great hope in my darkness.

Thank you once again. I don't know if you will ever know just how much I, and I suspect silent others as another poster put once, have been helped by you and your friends on this forum. 

I wish you all the luck with your next scans and of course will be thinking of you. 

Keep us updated and know you have others thinking about you too. 

I have no doubt your family are so proud of you, your being and mindset. 

S

Best wishes to all

[@Matthew2022]‍ Really hope all the scans went well for you. Fingers crossed all the treatments continue to do their thing. 

[@sair88]‍ There are definitely very rough moments during all the diagnosis.  But it does get a bit better once a treatment plan is put in place.  As Matthew says we are so fortunate with the medical experience and technology available to treat this disease and it is improving all the time.

My update is that I finished my last chemo session yesterday.  Woo Hoo.  I pushed it out a week to allow for a final ski trip which makes three vacations during chemo.  I was determined not to look back at it all and say I had a poor quality of life.  Quite the opposite, although I am glad to be finished with it and hopefully can start to recover from the fatigue.

I also had a planning RT scan and will start 8 weeks RT in 3 weeks time.  Everything looks to be in order on that front.

They will also add an extra hormone drug to my ADT.  Again this starts in 3 weeks time.  Not sure which drug it is as there seem to be options (abiraterone/apalutamide/darolutamide) but I have total faith in my onco to chose the best regime for me.

Also back to work slowly after all the chemo.  I'm told I might need some sick leave at the end of RT but will make the call at that time.

Rory