Still waiting for CT MRI and biopsy results

Thank you for your reply 😊I think it’s the not knowing that is so hard. Once we know what we’re dealing with I’m sure we’ll feel better. I hope you are doing well now. 

Oh good idea. Face to face with a consultant at Cheltenham urology. No bedside manner he had no idea he was giving us a diagnosis. He gave us a sheet to take to GP for Lhrh to be started today if possible. He dictated his letter to gp while we were waiting. He didn’t like my questions. GP said we should have been given a prescription so not giving us much confidence so far and they will call us later with way forward. We are seeing a private consultant next week which we booked ages ago so we can get his view. It’s slowly sinking in. No symptoms having to persuade GP to refer with 10.6 psa to this. It’s hard to take in. Although since 21st June we knew mri saw suspicious in prostate and outside but no definate diagnosis. So we’ve grieved already it’s just gone to numb now. The dread of breaking it to our loved ones. 

Honestly, I don't know. I was very anxious  during the process, and everything seemed muddled. I never really understood the difference between scans and what they meant. I knew very little about the disease or procedures at that time.

Edited by member 25 Jul 2024 at 23:40  | Reason: Typo

Hi 

We had appointment with private consultant who requested my husbands records so he had the full picture. Details below:-

T4

Gleason 8 4+4

cancer in prostate

cancer on pelvic muscle

cancer on pubic bone

cancer on pelvic bone 6cm

had first LHRH injection next one scheduled.

referred to oncology most likely for Chemo. 

Not such a good prognosis as we’d hoped. Now bringing forward plans we had for the future. 

both quite tearful when seeing friends and family despite trying to be positive. 

uncertain about booking new holidays feel long haul ruled out as don’t know how husband will be. Only symptom is pain seated due to the pelvic area. Losing a bit of weight. Quite low spirits. 

thanks all x

Edited by member 01 Aug 2024 at 12:11  | Reason: Typo

Hi Emma,  That's a disappointing appointment.  A 6cm lesion is quite large.  It would be interesting to know what the size of the one in the prostate is. The psa of 10.6 seems quite low and could normally be produced by a single  one around 1.5cm with a psa of 4+4.  Mine was 1.3cm, gleason 4+4  with a psa of 9.9.  We're all different though.  

My prostate was quoted in mm not cm.  Is there any chance they said mm.  The higher the Gleason the more psa is given out.  There is a formula somewhere on line relating  psa density and gleason.

It might feel academic but seeking to refine the diagnosis might open a few more options and it can make you feel there is more you can achieve.

Another person on here wasn't keen on using diet to see if it helped. But said he might try it as it gives a feeling of some control. The diet options are claimed to perhaps slow it down. Keto diet is one, but the full thing is a bit much. 

Also I've only told a couple of people and decided I'd only tell more if things became obvious. I don't want people reminding me or my wife.  Although in theory I haven't got it but my psa has been slowly rising.

I don't know if you use YouTube but there are lots of videos about treatments and diet.  Scholz and Geo do a lot of prostate videos. Being American they often speak like cost isn't a problem whereas in the UK options aren't offered as much and the drugs often have a different name. I haven't put Dr in front of their names as the posts can get blocked.  

Let us know when you have the Oncologist appointment, regards Peter