I’m so sorry it’s late but sleep is well....,

My dad was diagnosed with prostate cancer on Wednesday. It was such an unexpected shock and to be told it was very advanced and in his lymph nodes and bones honestly flawed us. His PSA level has been monitored by the GP for years but it’s always been literally borderline. Even during his most recent prostate exam the consultant assured him everything felt normal and the only reason he was going to do more tests was because he was approaching 70 and had a family history. We gave so little thought to it that on Wednesday we actually had made dinner plans for the evening (we didn’t go, in shock I decided for some reason to make dippy eggs and soldiers for us both at 10pm). My world has shifted, I actually feel selfish feeling like this because it’s not me who who has had this diagnosis. My aunties fell to bits on the phone when my dad asked me to ring and tell them yesterday, I had to be the strong one which felt unfair. Thank you for allowing me to express the thoughts that I cannot say outloud.xx xx

  • Hi Ffionj sorry about your dad hope you don't mind me asking butt which bones is it in, I've got non curable pc, it's gone to lymph nodes, spine, ribs, pelvis and a lung it's gleason 8 stage 4 psa 1581 that was Feb 2016, hope you don't mind me asking,. Best wishes.. Billy 

  • Hi Billy thank you so much for replying, I’m so glad I found this forum early as everyone genuinely seems so kind and helpful. Ironically my dads name is also Billy. Apologies for the time of night I’ve once again logged on but sleep has been really difficult since Wednesdays diagnosis. I don’t have a lot of information yet. The consultant told us that dad has a rare and advanced type of prostate cancer that has spread to his bones. I was lucky to speak to the specialist nurse the next day on the phone who was really lovely, caring and informative. She told me that dads cancer is going to be tricky to monitor as his PSA level is only 6. This in itself wouldn’t normally be overly high or an indicator of such advanced disease. She told me that there was definitely lymph node involvement (something the consultant hadn’t mentioned) and that we need to wait for a bone scan in the next week or so to have a definite idea of how to to move forward. I have no idea of the terminology yet and am wary of Googling too much as I don’t always think it’s helpful. I obviously want to be as informed as I can but should I wait for the full body CT scan first? Once again, thank you so much for reaching out to a complete stranger who is honestly panicking because of the unknown.

  • Hi Ffionj, don't worry I'm awake half the night anyway, if you're father is quite fit he will have better options, what ever you do don't Google mostly its worse case scenario, if i can help in any way please let me know I'll try to help if I can,... Billy 

  • Hi Ffionj, just thought I'll give you some of my notes to give you some idea, psa 1581 stage 4 gleason 8 non curable, specialist reckon psa 4 is borderline for cancer but psa can vary a lot as you can see with mine, my C went from prostate to lymph nodes, spine, ribs, pelvis and a lung that was Feb 2016, i still have C I just have to live with it best I can, hope that gives you some idea, I'm on permanent hormone therapy and cemo when neaded.. Best wishes for your father... Billy