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Chris J's Journey

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User
Posted 06 Feb 2019 at 12:41

The allocation of an advanced prostate cancer key worker sounds significant Chris.


You are still an enigma with the PSA number and not a huge amount showing up in scans.


Enjoy the time before the possible start of HT. (or not!)


Take care,


Ian

Ido4

User
Posted 06 Feb 2019 at 12:56
Blimey you are an enigma. Will you start treatment if the scans are clear in 4 months Chris

Bri
User
Posted 06 Feb 2019 at 12:57
Sounds as if the news was as good as might have been hoped for, Chris. Personally (and I know we're all different) I'd get on the HT as soon as possible; side-effects from it in my case have been minimal (basically dry orgasms, which are no big deal).

Chris
User
Posted 06 Feb 2019 at 13:03

Sounds like the news was better than expected? carry on carrying on Chris, well done.


Michaela

User
Posted 06 Feb 2019 at 14:02
I made it clear Bri that I’ll be putting off starting HT for as long as possible. If the scans are ‘ normal ‘ again then no I won’t ! And I think he may be bound until he sees a sure distant met before he can offer HT etc. I guess it’s because I’m refusing the NICE next step of RT.
Chris I think you are on Bicalutamide which isn’t the same as Castration HT at all. I had that for a year and was still at it all the time. Injectable HT can knock your desire flat in a week !
User
Posted 06 Feb 2019 at 14:09

So would the wide area radiotherapy include the suspect nodes and the ureta??


What you have sounds like oligometastatic cancer to me? Did your consultant consider this? Or the conclusions of this article?:


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5083765/


 

Edited by member 06 Feb 2019 at 14:16  | Reason: Can't type

User
Posted 06 Feb 2019 at 14:36

Time to make lemonade brother. wishing you well in your decision making process.


bazza

User
Posted 06 Feb 2019 at 14:39
I the RT wouldn’t cover that. I asked !! As he said he just needs clear abnormal scan. Then we will move on. I reckon I’ll take the HT but not Chemo. I doubt my liver would cope lol
User
Posted 06 Feb 2019 at 17:28

Originally Posted by: Online Community Member
I reckon I’ll take the HT but not Chemo.


 


Interesting - Stan took the opposite view and agreed to chemo but refused HT. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 06 Feb 2019 at 18:02
Yeh it’s a fair point Lyn!! Short shock and all that. Will see what’s on offer when needs must. Just trying to figure whether to holiday next four months whilst I can , or stay at work which maintains my sanity , or go on an epic bender ......... :-))
It’s all beginning to sink in a bit. No getting off the rollercoaster for sure but four months grace at least. I think he’s quite certain what is happening as he only wants a CT then. Not another bone scan nor psa !
User
Posted 07 Feb 2019 at 12:28
Would they / you consider having those 2 nodes surgically removed??
User
Posted 07 Feb 2019 at 13:24
Thanks yes I will ask that too next visit. Some Oncos go for cure with a few small Mets by Cyberknife etc instead of systemic treatment. It’s amazing how you forget these things when sat in there.
User
Posted 07 Feb 2019 at 15:54

CJ


Isn't life complicated, you are an inspiration to many of us on here, best wishes with whichever route you take.Not sure the bender is sensible.


Thanks Chris

User
Posted 16 Feb 2019 at 08:47
So , after an awful week where I’ve woken near-shaking everyday and needing a Diazepam to get going things became even stranger ! Even though we decided on four months I had a call from PET-CT. It seems I’m still part of an MDT meeting and my original Uro surgeon has decided he wants to give me a Choline-PET for free , without discussing with Oncology !! So it sets me off even more , especially as I’ve just spent nearly £4 k on a cruise mid - May. As mentioned in other posts any form of insurance in this world is in my opinion Legalised Fraud , and if I have this scan and the results in the next few weeks ( which are likely to be concerning ) then I’ll be lucky to recover even half the cost. After getting hold of Onco nurse it seems our original plan is still ok so I’m going with a lovely holiday and then back on the rollercoaster, rather than more sh**t news and a general shafting from an insurance company.
And I’ve got a PET scan in the bag :-))
User
Posted 16 Feb 2019 at 09:04
Why would having a scan stop you from going on your cruise, Chris?

Cheers,

Chris
User
Posted 16 Feb 2019 at 09:27
Lol , best I don’t say , the robbers even check your social media these days .......
All joking aside I guess I could get a diagnosis which would change the whole insurance deal maybe. And they’d prob want an admin charge to change it. I’ve realized I haven’t reached acceptance and am not dealing with this too well. I’ll deal with it in four months ......
User
Posted 16 Feb 2019 at 13:24

Sorry you’re feeling like that Chris. We are all here to support you. The cruise sounds amazing.


Have you had a PET scan previously?


 

Ido4

User
Posted 16 Feb 2019 at 13:50

Thankyou. Yes I’ve had 2 PETS , 1 Choline and 1 PSMA. Both with psa of 3. Both clear. They offering Choline again. I think I’ll ask for it just before cruise and then I see Onco directly on return. It seems if I don’t have pelvic RT then they not interested in treating individual tumors which may be my pathway. Bone scan still clear at psa 82

Edited by member 16 Feb 2019 at 13:59  | Reason: Not specified

User
Posted 16 Feb 2019 at 16:16

I thought you had, just couldn’t remember. 


Hope you can sort things so you can get away on the cruise and enjoy it.


I also hope that you can get an improvement in how you feel overall, that's not easy I know.


Ian


 

Ido4

User
Posted 16 Feb 2019 at 16:48
Where are you cruising to and on which ship? Not the Antarctic like Ulsterman?

Bon voyage!

Cheers, John.
 
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