Please help guide me !

User

Posted 07 May 2017 at 22:03

Hi Chris,

Have you read this

http://www.birminghamprostateclinic.co.uk/prostate/treatments/oligometastatic-prostate-cancer/

do you think it describes your circumstances? I am just wondering as sometimes having a name for what you are dealing with helps you to consruct your argument for the next steps plan...which to me is still your original plan of needing another good diagnostic scan...

Hope you had a good weekend.

With tons of respect

Clare

User

Posted 07 May 2017 at 23:37

Hi Chris
Thinking over this today. Revisited your profile.
Barry spot on. What is RT targeting ,?
Lyn.. can't add much more and agree
.1.
I would certainly get all your files digitally if you haven't already.

2. You deserve a 2nd professional opinion to review everything. ..

.. needs a new pair of eyes.

You are extremely resilient. . You would not have gotten this far or bother to post on here.
Don't beat yourself up..

Take care

Gordon

User

Posted 08 May 2017 at 00:11

Claret, Chris's onco was already of the opinion that Chris Is oligometastatic - see his post of January this year. The fact that the PSMA has come back clear rather refutes this; extensive micro mets may be more likely now

Edited by member 08 May 2017 at 00:16 | Reason: Not specified

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

User

Posted 08 May 2017 at 06:17

Thank you for clarifying Lynn

User

Posted 08 May 2017 at 09:53

Hi Chris,
I too like you and more importantly respect you for your honesty and caring manner when responding to posts. You have already and continue to help me through a very difficult time with my OH. I totally understand where your head is at though.
I think mostly everything has already been said but after reading all of the responses and reflecting over the weekend here are my thoughts.
1. You must get a 2nd opinion, it is clear that there are different treatment paths open to you and your current Onco doesn't seem able to either explain why his route is the best or indeed what else might be possible. if he could say I am offerring you this treatment and it is the best possible scenario for you because... I might be more inclined to listen but it seems to me he is just reading from an instruction book.
2. Where to go for the 2nd opinion.
Local Private Onco. Pro - easy to get to for appointment. Con - most probably works at the same center as your current Onco and may work from the same instruction book. Pro If he does have other ideas accessing this treatment may be easier.
Jamie. Pro -No idea who he is but seems to be well thought of here and capable of thinking outside the box. Con - even if he has a different plan are you going to be able to get your completely different health authority to carry it out.
Go back to London (those who carried out your scan sorry can't remember hospital) Pro's - you already have an in and they have your history as well as an interest in finding out why your scan did not show anything. Con - it means more trains
3. the 2 year cut-off seems completely arbitrary and more of a threat than anything else. What if your PSA only started rising at 22 months would they then withhold RT. Doesn't seem so from what I have read of other's profiles.
4. Does your GP have any thoughts on this
5. don't be pushed into a treatment you are not signed up for because as you say you are unlikely to follow it through.

I really hope you get this resolved and can get a plan together so that you can move out of the turmoil you currently find yourself in. You have worked so hard at getting your life back on track from where you were at the start of your journey and deserve to be back in that good place very soon.

Julie

User

Posted 08 May 2017 at 17:30

Thanks all so much. Really great advice and some touching kind words which have led me to some tears. There's been a few the last few days. I'm quite scared sadly.
Anyway I'm going to update my original thread with the results of today's phone calls etc , rather than have two threads running.

If life gives you lemons , then make lemonade

User

Posted 08 May 2017 at 21:14

Hi Chris,

Like the others, I wish you well on your decisions. I haven't much experience in your line of treatment but do know how unsettling and scared it can be.

Best of luck

Steven

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