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PSMA Scan before Intermittent Hormone Treatment

User
Posted 19 Jan 2023 at 02:23

I read the first paragraph of The Moon but I think I might need a few days before I can follow through. Thanks again for the link Lyn.

Jules

User
Posted 19 Jan 2023 at 09:07

Great post Lyn. Thank you so much for sharing.

I love the HD point, hilarious 😂 

I will take the time to read the links tonight.

Not sure if I am picking up correctly but are you saying OH jumped to early with the retirement ?

N

User
Posted 19 Jan 2023 at 21:47

Dear Lyn,

thank you for sharing the link to Andy’s thread. 
I think you were very perceptive to send that to me. Thank you.

I  am only half way through and need a break for an hour or two.  I was particularly touched by Andy’s chat with ‘her’

i hope many others take up the link 

also pretty impressed with your memory 🤓

N

 

User
Posted 19 Jan 2023 at 22:09

Originally Posted by: Online Community Member

Not sure if I am picking up correctly but are you saying OH jumped to early with the retirement? 

 

Good God, no!!!! He has never looked back - I just have to work extra hard to fund all his bloody hobbies and holidays and I am feeling a bit tired 😂 

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

User
Posted 19 Jan 2023 at 22:32

Hahahahahaha. 
I know this is a stupid thing to say  but you should take care of you too

i can’t imagine a life without work.   Sad as it is but I enjoy it and hate it. But I feel it defines me …… I know that is sad and I think Andy’s threads gives food for thought 

the trouble I have with this is it feels so selfish 

like I have always hated job applications and interviews me me me etc

 

User
Posted 19 Jan 2023 at 23:44
ChrisJ is probably a good person to talk to about this - he left work but then took on a new career as a school caretaker which he loved, and also was employed for a while as a care assistant to vulnerable people, I think.

Work is great if you love it and a waste of precious time if you don't. John loved his work but had a 2 hour commute most days; I felt that he could do something more joyful with his life.

There is a sombre consideration as well. I come from a local authority perspective and when we (sadly) had employees diagnosed with incurable illness, one of the things they were advised to do was get proper financial advice. The options (take ill health retirement, take early retirement & cash in the pension or stick with the job because of the death in service benefit) are complex & need to be worked through carefully. So, for example, I had a team member diagnosed with terminal cancer and her D-I-S was 5 x annual salary plus a decent widowers pension - it would have been madness for her to resign or take early retirement - she worked while she felt well enough and then went off on sick (on full pay) until she died.

John wasn't terminally ill so the finance adviser calculated it all out and if he lives for 17 years, we will start to lose out financially by something like £5 the first year and £17 the second year. By that calculation, retiring early and drawing down the tax free lump sum means he can have fun now and if he is still here in 17 years time, we won't really miss a fiver! But it wouldn't work out that way for everyone.

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

User
Posted 19 Jan 2023 at 23:45
Andrew1000, just wanted to apologise - these last few posts have been completely unrelated to your post. Sorry!!!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Jan 2023 at 11:52

Sorry to jump in on this post - but Lyn, your post at 20.55 is great and cheered me up - which hasn't been easy to do lately!

Edited by member 20 Jan 2023 at 11:52  | Reason: Not specified

Mrs MAS

User
Posted 21 Jan 2023 at 01:30
As promised here's my update following the discussion with the consultant which was no better than the first 3 months ago..........

"IHT is the only way forward for someone like you." "What's the point of a scan since it would not change the treatment being offered" "There would only be a change to the treatment if it stopped working." "The location would not affect the treatment."

Armed with the information and suggestions from you kind folks, and some NICE/NHS guidance, I am off to talk to my GP next week having already told him the answer is not this consultant!

Thanks again for your inputs.

User
Posted 21 Jan 2023 at 02:35
So basically, you are incurable and should just accept that? How disappointing and frustrating for you that the consultant isn't open to any more creative approach. Absolutely right of you to seek a second opinion from one of the uro-oncology centres of excellence, where the oncos may be a bit more modern in their approach.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Jan 2023 at 07:47

Have a look at the NHS clinical research page to see what is available also perhaps? It is very frustrating when they take 'what's the point approach'. Seems very much like NHS management speech. I can imagine if it was some of these physicians family members who have same presentation they would be asking the same questions! 

User
Posted 21 Jan 2023 at 19:21

You said in your first note it's a consultant  Urologist.  Was it a slip of the keyboard or was it an Oncologist?  Someone may correct me but I'd want to meet an Oncologist.

The specialist nurse might advise.  My Macmillan nurse covers both Urology and Oncology.

Edited by member 21 Jan 2023 at 19:22  | Reason: Not specified

User
Posted 22 Jan 2023 at 09:39

No need to apologise, Lynn

Every post is interesting and leads to more threads, experience and knowledge

A

User
Posted 22 Jan 2023 at 09:48

Originally Posted by: Online Community Member

You said in your first note it's a consultant  Urologist.  Was it a slip of the keyboard or was it an Oncologist?  Someone may correct me but I'd want to meet an Oncologist.

The specialist nurse might advise.  My Macmillan nurse covers both Urology and Oncology.

Good point Peter 2016, bio says consultant Oncologist they are listed under that department but letter from the hospital states Urology consultation. 

User
Posted 23 Jan 2023 at 21:25

Andrew, your browsing through this forum might have already alerted you to  Old-Barry

but if not you could check out his profile and some of his posts. He has been in the position of having recurrence some years post RT in 2007, had several HIFU treatments and is still holding PCa at bay. 

The words of your consultant are still in my head and I hope you never have to deal with that contemptible a******* again.

Jules

User
Posted 23 Jan 2023 at 22:22

Simply put 

 

You’re fired

User
Posted 25 Jan 2023 at 08:37

Originally Posted by: Online Community Member

Andrew, your browsing through this forum might have already alerted you to  Old-Barry

but if not you could check out his profile and some of his posts. He has been in the position of having recurrence some years post RT in 2007, had several HIFU treatments and is still holding PCa at bay. 

The words of your consultant are still in my head and I hope you never have to deal with that contemptible a******* again.

Jules

 

Thanks for the pointer, Jules

User
Posted 25 Jan 2023 at 08:41
Good news - I had a positive discussion with my GP. He could understand my frustrations and was very supportive in me getting the 'right' 2nd opinion.

Whilst he has gone off to research where to recommend, he's happy for me to come back with a suggestion.

Living in North Wiltshire, realistically I am looking to Bristol, Swindon, Oxford and at a push Southampton and have seen the last two mentioned in various posts. Obvious everyone's experience is different, but any pointers towards centres that are forward thinking and have the capability in-house to deliver a range of treatments would be welcome.

Thanks again for your support.

Andrew

User
Posted 25 Jan 2023 at 09:59

Originally Posted by: Online Community Member
Good news - I had a positive discussion with my GP.He could understand my frustrations and was very supportive in me getting the 'right' 2nd opinion.

Nice work! It's hard enough dealing with PC with good medical advice but being told to just take HT and see what happens was deeply disappointing from a urologist in 2023.

I'm in Australia so I can't suggest any places to check out but hopefully someone on here will have some suggestions.

I wish you all the best with this Andrew. Clearly it's not going to be easy but you've still got good options.

Jules

 
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