psa starts at 10,000+ before treatment down to a low of 716 now 810.

Hi JA

I would ask for another Psa because of the confusion, the easiest way is to ask your GP for one. I think that Psa levels can vary during Chemo so would be good to know what it is now  before starting new treatment. I presume that the new treatment is hormone therapy.

When was the last Mri done/bone scan? What do these show in terms of spread?

regards

Steve

Thanks for replying Steve. only ever had one ct/x-ray. approx. end of August. Showed in lymph nodes, spine and hips. Ask today about a scan she said "you don't need one". New treatment is I think another type of steroid or something it's tablet form. How the fuck can he not need another scan?. What we just guess hope tumors have shrunk?. To say im pissed off is an understatement. Last 2 chemo sessions suppose to show PSA levels, they was never requested on the blood test! what a fucking joke. Giving the wrong leaflet today too about this new drug/tablet. Yes nurses do there best but anyone above that clueless fucking muppets. This is my dads life on the line I expect NO mistakes. This is the 4th fuck up in there since treatment began. Oh and dad will not ask them he just says "oh they know what they are doing". Like fuck I know more than them. My mum died of cancer in that shit hole along with her brother her sister and her mum. My uncle last year diagnosed with the big C was told by same hospital it was inoperable. His wife is polish and said lets go to Poland see her specialist. They operated and he is now cancer free!. it cost him thousands but the R.U.H in Bath had to pay my uncle back the costs as he proved they was wrong.

Cheers Steve,

oh bit happier you confirmed PSA can fluctuate during chemo.

hey really sorry to hear how shabbily ur dad has been treated !!

you can go to ur gp and ask to be referred for a second opinion ,  there has to be a specialist cancer centre nearby .

i had complete faith in my oncologist but still got a second opinion just for peace of mind !!

it sounds like ur dad will be put on abiraterone like me , its what we get put on when normal treatment doesnt work so to speak .

if he goes on this he will see a nurse every 2 weeks to see how he gets on taking it, so he will have a blood test inc psa every visit ,

i now see the nurse every 2 months with the same for the oncologist so i have my bloods done every month 

 i've been on cannabis oil for 6 months i think its helping me !!

i know its hard but  keep positive and keep ur dad positive its a great weapon in the fight 

Thanks for replying Anubis. He won't get a second opinion he is stubborn as fuck. He will just shout "they know what there doing, mistakes happen" blah blah blah. I bought him CBD OIL, started at 10% CBD now on 30% don't think I can afford it much longer. What strength and make do you get? I got 3 types in 10% 20% 30%. I know at a time like this money means nothing but fuck it's soooooo dear. It's a joke that no PSA level was taken on last two blood tests but somehow today the oncologist said on 27th December it was 800 odd. Yet I seen the blood test result sheet when he was having chemo NO PSA LISTED! It was not taken. So where did she get her number from? someone is lying. But as I said I seen the blood test results from 27th December PSA was not listed, just to make sure chemo nurse checked computer and confirmed no PSA LEVEL was requested. As normal im angry,upset confused, scared.

Thanks for your time. ANUBIS

I’ve just finished chemo at RUH and at the end of each cycle I was given a blood envelope where I requested from my go a blood test which listed lots of different tests prior to chemo infusion.  Was this your father’s first lot of chemo or was the chemo to alleviate symptoms?

Have you been with him? If your father has questions get him to ring through to your fathers urology nurse to ask questions. Both chemo nurses and specialist nurses have been great with me.  

I know it’s frightening but trying to remain calm but firm is the only way to get the most from staff and not upset your father.  He will gather strength from your strength and anxiety from your anxiety.

I hope your father is not in any pain and that any treatment helps him.  I am due another scan soon to check how my bones have been affected post chemo, I know it’s not going away and unsure the purpose of more and more scans.

my thoughts go out to you, 

J

been with him all the way. Get the blood test bags/tubes after every session. chemo nurses 10/10 there fantastic, doctors/oncologist worthless useless mugs. Last chemo next week. then on some tablet, given wrong leaflet so fuck knows what it is. was so depressed hearing psa as gone up never played attention to tablet name, still no idea where she got the PSA level from sure she just made it up. I don't know ive lost hope dad thank fuck not in much pain but can't do fuck all without being very tired.[edited by admin] 

cheers Youngman

Prostrate cancer caught early is treatable, unfortunately for some of us it’s already too late, just making most of the time we do have, with modern and new treatments hopefully a considerable amount of time. I’m only 50 and whilst realistic hope to enjoy many years before the inevitable.

Im tired from the chemo and also get emotional from the tiredness but am sure that once chemo effects wear off I’ll get more energy. Sometimes I can’t even walk upstairs without getting breathless. Prior to treatment I was active and relatively fit. Week 3 post treatment my levels return. Hopefully this is the case for your father.

please be thoughtful how you express your frustrations and anxiety as we are all connected on this journey, you might be lucky and escape pc or you could be lucky and caught at a stage that can be cured.  Don’t give up hope, I haven’t/ can’t yet. I know the pain you’re going through after watching my mother’s journey.

please ring Macmillan, maggies or someone as I feel you need help that this forum cannot adequately provide

J

Thanks for your reply youngman, yes too late for dad a matter of time. Don't let idiots like me drag you down. it's true mind over matter is huge. You live your life enjoy what you have best of luck for the future. sorry my posts are so bleak mental strength is not my strong point. just today was a reminder of how bad things are. the oncologist did not help. sorry stay strong and positive. 

cheers.

You can always go to the appointments with your Dad and ask the questions he doesn't want to ask. 

I go to every appointment. But when I get in the room I freeze. It's the same room as my mum was told it's over. I was thinking last night I must write down my questions. Yesterday the PSA level was a huge shock stunned me. One, where did she get the result from? as I said I seen the blood test result sheet and the last two the PSA level was not on there a qualified nursed confirmed it even checked on computer. So I was not prepared for any results. Then she said (the oncologist/doc) "you don't need a scan" when dad asked. Why? how the F do we know it's not gone even further or by a miracle shrunk. I just shut down trying not to panic. I do try and stay strong in front of dad. I also have questions that dad may not want to have the answers to, so very worried I will ask something that dad does not want to know. Im simply scared dad is all I have. 

Thanks for your time FREEFALLER.