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

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 

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 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 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 

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