I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Meeting on Wednesday

User
Posted 08 January 2018 17:51:20(UTC)
Hi All
Partner diagnosed with PC spread to lymphnodes, shoulder, hips. Original PSA was 127. No symptoms other than frequent urination.
Meeting on Wednesday for results of prostate biopsy and we are less than optimistic for while it was being done under local anaesthetic doctor alluded to the fact that one side was badly affected and there was evidence on the other side also.
Ronnie has been taking Casodex since 21st December shortly to finish and had first injection into hip last Friday.
We are just so dreading the worst news possible and would be grateful for suggestions of questions to ask please.
Everything just seems so bleak at present.
Thank you so much for listening! xxx
User
Posted 08 January 2018 21:09:07(UTC)
Good luck on Wednesday. I was diagnosed last May with wide spread through the bones but nowhere else thankfully. I think the most important thing we asked was about where we go for support and we got signposted to The Maggie’s Cancer Care Support charity. Also found McMillan nurses brilliant. My PSA was 129. Even if the news isn’t good it’s important to best in mind that there are so many treatment options now that help us stay around, hopefully, for a long time
Thanked 1 time
User
Posted 08 January 2018 21:32:09(UTC)

Deedee,

There is a Maggies Centre at the Western General Hospital, Edinburgh. Link below.

They are a great drop in centre, very understanding and supportive staff and should have lots of helpful booklets on PCa.

https://www.maggiescentres.org/our-centres/maggies-edinburgh/

 

Also Macmillan, link below, which offer a free call line to knowledgeable specialist nurses.

https://www.macmillan.org.uk/information-and-support/prostate-cancer

Please keep us posted, there are many supportive people on board here who can help.

Best wishes, G

 

 

 

Thanked 1 time
User
Posted 11 January 2018 06:47:45(UTC)
Well we had our meeting late yesterday afternoon and got the news we were expecting Gleason 9 as doctor said we are dealing with a tiger not a pussycat. Assigned a cancer nurse and have been referred to an oncologist. Looks like a rocky road ahead. First time I have seen Ronnie visibly shaken was when chemotherapy was mentioned. Just feel sad this morning but we will carry on and fight this prognosis. xxx
User
Posted 11 January 2018 09:48:30(UTC)

Hello Deedee.

So sorry that you find yourselves here

I'm, no expert at all, since we haven't got to your stage, but from reading on here I'm sure that the Chemo doesn't need to raise the fear in you that it appears to have done.

Chemo, like the word Cancer has ominous sounds, but in this case Chemo is often used in conjunction with other treatments to enhance their effects so perhaps that was why the word was used.

 

We can't control the winds - but we can adjust our sails
Thanked 1 time
User
Posted 11 January 2018 10:17:37(UTC)
Thank you so much for replying and yes I think chemotherapy would be used in conjunction with other treatments.
I think it is fear of the unknown more than anything and also the myths surrounding the side effects that scare you. But I have also read about patients who Have soldiered on through treatment and dealt beautifully with it. Fingers crossed. xxx
User
Posted 11 January 2018 10:35:10(UTC)
Hi DeeDee
You are in a very similar situation to my husband. Diagnosed in Dec. Spread to pelvis spine ribs etc. Also he has lymph nodes which are affecting left kidney. Gleason 8. Been on Bicalutamide for a month then had Prostap injection on 19th Dec. Oncology at end of Jan and expecting Docetaxel. We are apprehensive about chemo but it seems to be the best, or only option. Good luck with your treatments.
Thanked 1 time
User
Posted 11 January 2018 12:19:01(UTC)
Wishing you and Ronnie all the best as you fight this prognosis.
Ian
Thanked 1 time
 
©2018 Prostate Cancer UK