Frustrated

Hi D, sorry to hear

Since Covid telephone diagnosis seems to be more usual even though Covid is over.

If you can give is some figures we may be able to help with advice.

Figures needed would be PSA, Gleeson score from biopsy, assumed he's had one, and what does the MRI say.

Regards

Steve 

Hi 

He has had both MRI and biopsy. His PSA was 18, his Gleason score was (3+4 )7 & he was told there was shadowing on his MRI. He had 24 samples removed for biopsy and 10 came back positive and they were spread all over the prostate so he was told radiotherapy was not an option and that prostate removal was the only option he had.

I guess we were feeling pretty upbeat and positive because the process was going along fairly fast but this lack of information and communication is causing huge stress and anxiety 

Good thing is ,stats not particularly high.

Potentially still curable.

The most important thing to find out , is the cancer still contained within the gland, I would imagine it is, things then a lot easier.

I would say to them that you need to see someone for a proper consultation and explanation.

Best wishes

Steve 

It is good that they are reviewing as I would imagine it means one of the Multidisciplinary team (MDT) have queries or want to discuss things at more length with the other members or review the MRI and biopsy results again to make absolutely sure about everything.  The thing is they should have kept you informed and definitely not said they would ring you and then not ring you.  The reverse happened to me after my successful radiation treatment as my consultant was supposed to ring for a phone consultation but I had some problems so called his nurse and agreed with them that I would have a face to face.  On the day they should have rung they did and I was driving the car so my wife had to talk to them and tell them that I already had a face to face appointment with the consultant later that month because of some of the problems I had had.  That was a long time ago now going on for 6 years.  The lack of communication here never seems to get sorted I am afraid.  By the way all those years ago I too was told I had cancer by telephone call - it was the way that particular urologist worked - personally I think that is wrong as I think face to face in a hospital environment  is better.

Just picked up on a point Freefaller made. Obviously it is down to individual preferences but I was also told by my Consultant that I had aggressive PC by telephone, whilst at home. He chose telephone to limit any delays. I was in fact very grateful for that as I could sit down, digest what had been said and cry by myself. I would not have wanted to be with anybody trying to hold back tears, which I probably would not have achieved. I would say my Consultant was factual but appeared to also be sympathetic, which went a long way. Also it meant I didn't have the bother of travelling to the hospital about an hour each way, just to be told bad news.

I can see there are pros and cons to this and you are right this meant you had no delays.  In my case it could have waited and I felt it would have been better had I been face to face and had the time to ask questions and was in the place where I could have asked questions of the staff after my appointment - which of course did eventually happen about a month later.  All I was told was how many of the samples tested positive, Gleason and TNM scores and told a letter would follow - no time given for questions to be asked and answered just told to wait for an appointment to come in the post.and not told name of keyworker or designated cancer nurse - which could have been useful with questions - as it happened I think I only once managed to get in contact with my keyworker by e mail in a couple of years as she was so busy.  Again that was just the way this urologist worked I think the telephone call was about 5 mins on a bad mobile phone connection - why they had used my mobile I don't know as I had told them to use my land line but that's another matter.

Freefaller

I'm with you on this. I get the impression the phone consultations I have had with the CNS are hurried - although they are both lovely - I feel I don't have the time to digest what they are saying to formulate a question or response. I am so glad I was told face to face. Hit me like a train, though, as I'm sure it does everyone else.

Stuart

We undervalue the importance of seeing the reactions in people's faces for successful communication.  I was so shocked to be given the news on the phone that i failed to put it on loudspeaker so that my wife could hear - a more difficult process on my old steam driven mobile phone than it would have been on the home phone.  We were left sort of floundering and waiting to hear from our GP - and that was a total mess as it was at odds with what the urologist had told us and it went on like that at the first stages.  That is why we were so thankful to the Specialist Prostate Cancer Nurses on the Prostate Cancer UK free phone help line.

My husband was also told over the phone in September. I was listening in to the conversation and recall the exact words, ‘ hello, I am Dr from (surgery) ( no pause)  Unfortunately your mri scan shows you have prostate cancer’. I had to sit down at that point. How cruel that approach seemed! He laughed ( instead of crying?)!!! I too feel very angry about appointments being delayed or postponed!  I have turned my feelings of helplessness into one of trying to ensure my husband gets the care he needs when he needs it. I have telephoned and challenged hospital delays and requested information  all along the way as my husband sank into some sort of depression, helplessness, bury-his-  head in the sand mode. I guess we all deal with things in our different ways. But , despite lots of tears on my part, I knew I had got to keep things moving along to get the treatment he needed because he couldn’t do so at the time. He has now started treatment and says the relief he feels is tremendous. He has finally started to talk and take an active approach in what is happening.  I would suggest trying to find out if you have a prostate cancer specialist nurse team. They have been fantastic - the only people who have given us information and support, have treated us as human beings and have been so very proactive in getting timely appointments. 

I wish you all the best care in the world!