Bone scan results

Hello BG (Bg65) 

Thanks for the update, here's my view for what it's worth (others may differ).

He's started Hormone Therapy and we know Chemotherapy is on the cards for later. It's Prostate Cancer that may/may not be elsewhere. There's a PSMA-PET scan that pick up any cancer cells that have gone "walkabout". Is it worth asking your brother's team if this would give quicker and better results. (The reply will probably be either - we haven't the facility to do that here or it costs too much - about £ 2750).  My response would be Bu**er the cost and he will travel to where they can do it.

A bit of "housekeeping" if you don't mind. I had to look for your old posts to see where we were up to with your brother. Can i ask you to please update his profile when you get chance - then we can just click on his avatar or name to see where we are up to. To do this on your home page click on the chair - top right - then "profile" then "edit". Once you have written something remember to click on "save". (You can read my profile by clicking on my name or avatar - I use it as a diary to remind me of everything!).

best wishes - Brian.

Thank you Brian for quick response I will pass all this over to my brother . I really appreciate this advise and I’ve said it before but without every one here I don’t know how I could have coped 

I will write up his profile I’m just not very good with bloody technology but I will give it a go

thank you so much 

BG

Hi Bg65

‘Its good in some ways that they get things right, rather than give false information.We’ve all gone through the not knowing and when will things get going, just keep us informed, let’s hope things start getting better.

Stay Safe

Joe

Thank you joe I know what your saying and your right it’s just all the waiting but I know that’s part of this journey that we are now on . In my post I said the oncologist apologies it was the urologist who said that to him we haven’t saw his oncologist yet that’s the 13th of this month . Once again thank you 

BG

Hi Bg, I'm sorry to see your getting the run around too, I have been told twice my cancer had spread to my bones, collar bone 8 months ago, ribs 10 weeks ago, both times they were wrong, and 6 weeks ago they told me it's in my lower spine, I have had  3 bone scans recently as they weren't sure, and they never even knew all the issues with my lower spine, I have 4 lesions, 2 wedge compression fractures, osteoarthritis and osteoporosis with multiple micro fractures, I see my 'wonderful ' team again tomorrow for the 4th time in 4 months, my patience is over,  

Eddie 

Thank you Eddie for replying that’s awful how could they get it so wrong . It’s the not knowing that’s hardest he’s just not knowing if it’s in his bones or not I’m praying it’s not and it is old injuries . If it’s not in his bones will that change his treatment ? I think urologist has said HT with chemo but I’m assuming they said that thinking it’s in his bones it’s just a muddle and he also hasn’t saw his oncologist yet I’m assuming it’s them who decides on treatment . 
once again thank you for replying it’s talking to others in here that has helped so much 

BG 

Hi BG, your right it's your oncologist/MDT team, which will decide his treatment,  though urology will get a say,  and if the cancer has spread to the bones, it can change treatment, it depends how early it's caught and where it is, as your team are saying M1 and not M1b I would see that as a positive, I was M1a at diagnosis, locally advanced,  in 4/5 organs and 8 lymph nodes which after 31 months of treatment  are NED, except for 1 lymph node, I can imagine with us both having extensive bone damage in the area, diagnosis is more difficult,  but as there was no mention  of lower lumber involvement until 4 weeks ago, I am hopeful it's misdiagnosis number 6, best wishes to you both.

Eddie xx 

Hi Eddie 

again thank you for replying . Initially urology did say after the MRI it was mx then when he  went to see the urologist couple of weeks later they had changed it to M1b and that was before the bone scan results because he only got that yesterday but like I said on speaking to the urologist after learning of his injuries she said disregard that as this is significant so phone call about his bone scan she said there is extensive bone damage arthritis etc so we can’t tell so they need to send him for another MRI and cat scan she said . so yesterday he was none the wiser it’s so frustrating . I really do hope it’s misdiagnoses number 6 for you good luck and again thank you 

BG 

Hi BG, your welcome, I'm sorry your still in limbo and hope when they finally have answers, they bring good news, unfortunately I have mets  confirmed in my spine, in 4 places, so SABR, is still an option and my recent change of meds 6 weeks ago has got my PSA well below 1, 90% down already.

Eddie xx

Hi Eddie your doing great you have such a possitive attitude and I’m so sorry about the mets in your spine but look at your PSA down90% I don’t know to much about this bloody prostate cancer at the moment I’m trying to learn and it’s kind people like you on here who have softened the blow it’s the best thing I ever did joining its speaking to others who are going through this that has helped me so much and again I thank you for explaining everything to me 

BG