Still waiting on appointment.

Thanks Lynn.  Specialist nurse said his appointments been retracted !! So basically it HT. We don't get a face to face with someone who can sit and give us answers? All info has came from this site and leaflets. Going to speak to gp about the beginning of alzheimers . Its getting worrying now.  

I’ve waited over a year since my PSA (7.4) April 2018 had MRI, biopsy, bone scan, prostate cancer 7 on Gleason scale 

Radio thearpy doesn’t start till June 2019 over a year since PSA 

To long to wait I think 

Thanks for replies.  Appointment through for beg of may.  As alzheimers runs in the family I just assumed dad had the start of it as it's been progressing for A few years.  Now we know he's probably had pc all this time.  Never thought about them being linked so thanks for info. Going to compile a list of questions. Ta all. 

Hi

i would want answers about why it’s just HT and why his appointments have been retracted? Surely they can’t just give him HT only without informing him of the reasons? Unless of course this has already been mentioned to him but he has forgotten. I’d be unhappy at what I see written here and would be asking the GP or specialist nurse for clarification as to the treatment plan. As Lyn said it might be that for now he is on HT only, it might be that other medical issue prevent early chemo, but in my understanding that would be the first level of treatment for his situation these days wouldn’t it?  There isn’t much detail here to go on, we started with a urologist but were transferred to oncology because we joined the stampede trial, I’m not sure when we would have transferred to oncology other than that. We still saw a urologist from time to time due to many issues related to the bladder (prostate related). As said by others, HT can make you feel cotton wool headed, as can build up of calcium from mets. My own hubby cannot keep Information in his head for ten minutes, it drives me nuts but I know why and feel for him. It’s horrendous to have insight into that too.

Are you able to supply any further information about dad’s case?

love Devonmaid xx 

Ok, better news on the appointment front, I’m sure the oncologist or urologist will decide whether Chemo is the way forward from here. Most people have bone scans and dad surely must have had those to determine that there is spread to bone, so much will depend on the scale of the spread I guess and his general health. They may wait to see how the HT works, I’m not sure how the current protocol works as my hubby (Gleason 10) has only recently had chemo and he’s eight and a half years post diagnosis. Current protocol is to have early chemo, so that  may be on offer.  Years of Stampede trials have proved that this is a good way to proceed whereas back in the day chemo was left to last ditch attempts. I think we waited three months from diagnosis to first proper appointment and three months of HT, all of which was good. It may have been eight weeks, depends on how they do things locally. Time has made this rather hazy! HT tends to be a good first treatment  and how you respond to it can be an indicator of how you’ll do. In John’s case his PSA dropped from 25 to 0.1 in three months, a good response and so it turned out as he is still around with such a high Gleason score and spread on diagnosis. Every man is different so you can’t really assume you will mirror someone else but a rapid PSA reduction is a good sign.

Pleas let us know how things go.

love Devonmaid xxxx

Edited by member 22 Apr 2019 at 10:57  | Reason: typos

Ok, not the best news but at least you know what’s what and that is always helpful. Have they put you in touch with the palliative care team because you will need support over the time ahead? I couldn’t have coped without our lovely hospice nurse, she’s a massive help with benefits, home aids etc. She helped me get homeline installed quickly after my hubby fell last week (he had sepsis). Amazing care from them and also a support for me.

hugs xxx

Devonmaid xxx

Sorry to hear the news wasn’t great. My own dad is on s similar time line to yours re diagnosis. We have an appointment in June with the prostate cancer urologist but have just got another one for next week with an oncologist too. My dads psa was 1000 and he’s very unwell. Can’t walk a few inches without losing breath which they put down to anaemia . Did they give you a prediction of how long your dad might have 

Thank you Jackie I’m really nervous about appointment. I’m the only family member so trying to take it all in and cover my grief so as not to upset him. My dad has heart failure and really doesn’t want chemo . If he got two good years I’d be thrilled with a good quality of life