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Still waiting on appointment.

User
Posted 17 Apr 2019 at 19:02

Dad had first urology app 6 weeks ago.  We were told definitely pc.  Then had bone scan and biopsy.  Result told over the phone stage 4 with mets to spine pelvis and shoulder.  Gleeson score 4+4=8. Not seen a blooming sole and still waiting on oncology appointment. He goes to nurse every month for hormone injection.  Seriously have tons of questions and worries including dad's very bad memory which is getting worse.  How long is it ok to wait ???

User
Posted 18 Apr 2019 at 07:46
The first few months I was on HT I felt as if my head was full of cotton wool and just couldn’t think clearly. Fortunately in my case the effect gradually wore off.

Chris

User
Posted 04 May 2019 at 15:50

Good luck at appointment. Dad didn't want to know So went outside at end so I could speak and ask questions.  Afterwards could look him in the eye and say that I was told years. He's happy with that and u never know he might be the 50 % ?? One step at a time. X

User
Posted 17 Apr 2019 at 19:58
There may not be an appointment with an oncologist if they don’t intend to offer anything other than the hormones that he is already on. Give the nurse a a ring and ask whether s/he is leading on dad’s care plan and if not, give the urologist’s secretary a call to see whether they intend to see him again at some point or have passed his case on. If you are concerned about memory loss / confusion, talk to his GP - alternatively, is there a Maggie’s or Macmillan service at the hospital?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 17 Apr 2019 at 20:44

My dad was diagnosed two weeks ago  but had complications due to pneumonia etc . Despite being inpatient in hospital we got little info. He is on monthly injections and we are going for radio treatment tomorrow no idea of how many. He’s very unwell so I’m hoping the hormones will do something. Our next appointment is in June with urologist specialising in prostate cancer . Maybe it’s normal to let hormones work for a few months ? 

User
Posted 17 Apr 2019 at 21:22

Hormone Therapy (HT) will normally stop PC growing for a while.

It's given in the case of having curative radio therapy (RT), usually for a few months before, and anything up to 3 years afterwards if the RT is believed to have killed all the cancer, because it makes the RT significantly more effective and the cancer less likely to return.

If the PC is not curable (e.g. mets in bones or other distant mets), then HT is given for life, but chemo is likely to be used too, sometimes early on, sometimes only when HT starts becoming less effective.

User
Posted 17 Apr 2019 at 21:33

Originally Posted by: Online Community Member

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.  

Don't assume it is Alzheimer's - confusion can be a side effect of the hormones, can also be a side effect from bone mets (too much calcium in the blood) or could simply be a combined effect of being diagnosed with cancer and then being told it is incurable. I would want to discuss that with the clinical nurse allocated to your dad. 

Edited by member 17 Apr 2019 at 21:33  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Apr 2019 at 07:12

It might be the drugs my own dad is usually very sharp but since diagnosis can’t even watch a tv programme. I thought it was pain killers . He asked what day it was yesterday at least 8 times 

User
Posted 19 Apr 2019 at 18:07
Just to clarify, cognitive issues are not a symptom of prostate cancer, but can be a side-effect of hormone therapy which is a treatment for prostate cancer.

Best wishes,

Chris

User
Posted 01 May 2019 at 20:06

Hi dad's app with oncology today.  No surprises. They dont think chemo would be good for him would only give average of 10 months extra with lots of side effects that wouldn't be good for him so we have declined it.  Just going to monitor it with psa and 3 monthly injections.  Concerned about memory so to see gp asap. 

Options available to help with on going future symptoms and at least we have a contact now.  Going to make it as comfortable as possible.  

Edited by member 01 May 2019 at 20:07  | Reason: Not specified

User
Posted 02 May 2019 at 14:07

Dad's still very mobile and got good quality of life. Will look into palliative nurse.  First ive got to sort out if memory gets worse so need power of attorney while still capable. How's things going with you?

 

User
Posted 03 May 2019 at 20:58

Hi was given the stats of 50 % are alive after 5 years.  But gp confirmed he was late diagnosis in most of his bones so maybe couple of years if psa behaves. 

6 rounds on chemo was giving him 10 months but maybe 6 he would be not well. Lives on own and in upstairs downstairs house.  Had heart attack years ago. So everyone swaying to not get it just now.  Just want good quality of life now.

 

 

Jackie x

User
Posted 12 May 2019 at 17:15

Sounds like a plan.  That's all we can do. Go with the flow and help them through it.  Can be over whelming at times though. X

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User
Posted 17 Apr 2019 at 19:58
There may not be an appointment with an oncologist if they don’t intend to offer anything other than the hormones that he is already on. Give the nurse a a ring and ask whether s/he is leading on dad’s care plan and if not, give the urologist’s secretary a call to see whether they intend to see him again at some point or have passed his case on. If you are concerned about memory loss / confusion, talk to his GP - alternatively, is there a Maggie’s or Macmillan service at the hospital?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 17 Apr 2019 at 20:44

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.  

 

User
Posted 17 Apr 2019 at 20:44

My dad was diagnosed two weeks ago  but had complications due to pneumonia etc . Despite being inpatient in hospital we got little info. He is on monthly injections and we are going for radio treatment tomorrow no idea of how many. He’s very unwell so I’m hoping the hormones will do something. Our next appointment is in June with urologist specialising in prostate cancer . Maybe it’s normal to let hormones work for a few months ? 

User
Posted 17 Apr 2019 at 21:22

Hormone Therapy (HT) will normally stop PC growing for a while.

It's given in the case of having curative radio therapy (RT), usually for a few months before, and anything up to 3 years afterwards if the RT is believed to have killed all the cancer, because it makes the RT significantly more effective and the cancer less likely to return.

If the PC is not curable (e.g. mets in bones or other distant mets), then HT is given for life, but chemo is likely to be used too, sometimes early on, sometimes only when HT starts becoming less effective.

User
Posted 17 Apr 2019 at 21:33

Originally Posted by: Online Community Member

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.  

Don't assume it is Alzheimer's - confusion can be a side effect of the hormones, can also be a side effect from bone mets (too much calcium in the blood) or could simply be a combined effect of being diagnosed with cancer and then being told it is incurable. I would want to discuss that with the clinical nurse allocated to your dad. 

Edited by member 17 Apr 2019 at 21:33  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Apr 2019 at 07:12

It might be the drugs my own dad is usually very sharp but since diagnosis can’t even watch a tv programme. I thought it was pain killers . He asked what day it was yesterday at least 8 times 

User
Posted 18 Apr 2019 at 07:46
The first few months I was on HT I felt as if my head was full of cotton wool and just couldn’t think clearly. Fortunately in my case the effect gradually wore off.

Chris

User
Posted 19 Apr 2019 at 15:48

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 

User
Posted 19 Apr 2019 at 16:27

Mike,

I'm not sure the wait for RT is much of an issue (RT works better if you've been on HT a while), but you had a long time before starting HT, and that's probably more significant. The HT is the start of your treatment.

I had a 2 month wait for a trans-perineal biopsy, but I was on HT already following a diagnosis from TRUS biopsy, done on first visit to Urology.

Edited by member 19 Apr 2019 at 16:28  | Reason: Not specified

User
Posted 19 Apr 2019 at 17:42

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. 

User
Posted 19 Apr 2019 at 18:07
Just to clarify, cognitive issues are not a symptom of prostate cancer, but can be a side-effect of hormone therapy which is a treatment for prostate cancer.

Best wishes,

Chris

User
Posted 20 Apr 2019 at 08:26

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 

User
Posted 21 Apr 2019 at 13:44

Devonmaid thanks for the reply.  Since my post dad's app has been reinstated on same day different time.  I believe this is thanks to nurse practitioner at urology.  That is all the info we have on dad. T4 with mets to bone. All 6 biopsies had pc and Gleeson 8.  I've not been told if there is anything apart from ht. When diagnosed his psa was 102.  No mri or other psa tests (probably bit early for that). Very glad to finally be able to sit and talk with someone now appointment coming through.  Dad's memory has been iffy for years. But yes now it's retaining info.  Hes 75.  So much info on this site. Its preparing us for what's coming. Thanks to all.  X

User
Posted 21 Apr 2019 at 18:20

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

User
Posted 01 May 2019 at 20:06

Hi dad's app with oncology today.  No surprises. They dont think chemo would be good for him would only give average of 10 months extra with lots of side effects that wouldn't be good for him so we have declined it.  Just going to monitor it with psa and 3 monthly injections.  Concerned about memory so to see gp asap. 

Options available to help with on going future symptoms and at least we have a contact now.  Going to make it as comfortable as possible.  

Edited by member 01 May 2019 at 20:07  | Reason: Not specified

User
Posted 02 May 2019 at 09:42

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

User
Posted 02 May 2019 at 14:07

Dad's still very mobile and got good quality of life. Will look into palliative nurse.  First ive got to sort out if memory gets worse so need power of attorney while still capable. How's things going with you?

 

User
Posted 03 May 2019 at 06:56

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 

User
Posted 03 May 2019 at 20:58

Hi was given the stats of 50 % are alive after 5 years.  But gp confirmed he was late diagnosis in most of his bones so maybe couple of years if psa behaves. 

6 rounds on chemo was giving him 10 months but maybe 6 he would be not well. Lives on own and in upstairs downstairs house.  Had heart attack years ago. So everyone swaying to not get it just now.  Just want good quality of life now.

 

 

Jackie x

User
Posted 04 May 2019 at 10:21

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 

User
Posted 04 May 2019 at 10:22

My dad lives alone also 

User
Posted 04 May 2019 at 15:50

Good luck at appointment. Dad didn't want to know So went outside at end so I could speak and ask questions.  Afterwards could look him in the eye and say that I was told years. He's happy with that and u never know he might be the 50 % ?? One step at a time. X

User
Posted 08 May 2019 at 18:49

Well had appointment and went ok. No discussion on timelines . Doc wants to introduce 4 weekly infusions of a bone strengthener. Also wants to start a second hormone in tablet form called zygtigA and a steroid. Starting next week. Said he is also considering changing the hormone injection to one every six months. Infusion to be done next week and tablet started . Lots of side effects from the zytigA. No bloods taken todAy and second firmsgon given  

User
Posted 12 May 2019 at 17:15

Sounds like a plan.  That's all we can do. Go with the flow and help them through it.  Can be over whelming at times though. X

User
Posted 12 May 2019 at 22:24

That’s it. My dad was easily the sickest person in the waiting room still can’t ealk more than a few yards and very weak. But the waiting room was an eye opener while I’m heartbroken there was one heavily pregnant girl as a patient only around 25 and a very gaunt looking 17/18 year old. Cancer is a horrible disease x meanwhile I’m praying for some sort of improvement 

 
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