Trying to understand scoring

User

Posted 11 Jun 2016 at 10:14

Hello

This is my first post. My husband had a biopsy on the 1 June. He was called in for results on the 9th June and has a bone scan booked in for the 15 th June so things are moving quickly. Now although he had presented at his own doctor a few times because of trouble with peeing and was sent away after a rectilinear exam saying just age ( he is 69) no Psa test was offered. He went back again and was seen by a local who did another exam and sent him off for Psa and ultra sound Appointment came through quite quickly and since then things have moved fast as I said. Which is great but I am so worried that it is really advanced. I had been reading a lot on this site and thought I was prepared to ask the right questions at the biopsy results meeting : Ithe consultant said the results were positive and that unfortunately it was aggressive. He did not mention the Gleason scores so I asked the question, he seemed surprised he was not a very good or clear communicator. His answer was 5 I think I then said something like is that the both scores and he said yes it's 5. He didn't mention anything about staging but I assumed they would have to do an MRI first to determine this, however they have gone straight for bone scan. We have an hours journey to the hospital so I called to see if there was a possibility of doing the MRI on the same day. I was told he had to have the bone scan first to decide if an MRI was needed. I will try to be better prepared for the next results meetin and the information and tool kits on this site have been great. The hospital gave me one of the booklets where I can record results questions and answers etc so that will be a help. My question now is does the doctors answer of 5 really mean 10?

Thanks

User

Posted 11 Jun 2016 at 11:31

Mountain stream, I don't think there is any way of guessing. What a shame that the doctor was so rubbish at communicating. He may have meant both scores were 5 but he could just as easily been telling you that one of the two scores is a 5 and just couldn't be bothered explaining the other number. So he could be a 5+5, 5+4, 4+5, 5+3 or 3+5 :-(

Or he could have been telling you that the PSA reading was 5 which is much less worrying all round

Were you given the number for a nurse specialist that has been allocated to you? If so, give him/her a call on Monday and ask
'What was the PSA reading?' and 'what is the Gleason score'

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 11 Jun 2016 at 15:23

So frustrating to hear of the poor communication with the consultant and also another GP who has let his/her pattient down very badly

Finger crossed for the results from the scans

Bri

User

Posted 11 Jun 2016 at 15:52

Thank you both for the reply. The PSA WAS 15 and there is a family history with my husbands dad who had PCs which had gone into bones and then elsewhere but this was 25 years ago and dad did not talk about his illness at all with his family so hard to say what went on.

We haven't been allocated a nurse as yet though they did say they will be putting together a team to discuss treatment etc. Can anyone say how long you have to wait for bone scan results - do they tell you on the same day?

User

Posted 11 Jun 2016 at 17:17

Hi, no they wouldn't usually give results the same day. All the results from biopsy, scans etc will be reviewed by the multi-disciplinary team (MDT) who would then decide together which treatments might be available to you. You & OH would then be invited to an appointment where you are given the options and asked to make a choice (unless of course there is only one treatment option in which case they just tell him what they can do)

The MDT will probably include a urologist, oncologist, radiologist and nurse specialist.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 11 Jun 2016 at 19:13

Thanks for the info. Fingers crossed for Wednesday.

User

Posted 11 Jun 2016 at 20:16

Hello Mountain Stream and welcome from me too.

Good luck for Wednesday. Hope all goes well for both of you.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails

User

Posted 11 Jun 2016 at 20:18

Sorry you find yourself in this position. it can be so confusing at first. My oh was diagnosed in late 2014, and here is how it panned for us. It may give you some idea. He had a Gleason 9 and psa 9.

24.09.14 GP blood test

29.09.14- recall to gp

07.10.14- visit to urologist plus biopsy

22.10.14- results of biopsy

04.11.14 mri scan

06.11.14 bone scan

22.11.14- meeting with consultant

01.12.14- RRP

I think they have 60 days from diagnosis to agree a treatment plan.

Write down your questions for your next appointment. And get the name and number of someone to talk to on the team

Louise

User

Posted 11 Jun 2016 at 21:00

Thanks so much for the info and good wishes I will post again no doubt for more advice after Wednesday

User

Posted 21 Jun 2016 at 23:36

Hi all quick update: bone scan cancelled on Wednesday scanner had broken down, rearranged for the Friday which went ahead. Had an MRI appointment for Saturday 25 come through the post. Phone call from consultants secretary saying results of bone scan were bac and could we go to meeting this Thursday 23rd. OH explained he had MRI booked in for Saturday so meeting rearranged for Thursday 30th when they will have all the results. Asked for results of bone scan but said results are not discussed over the phone. From the posts on here I appreciate that every hospital is different but I have also read that if bone scans are positive they tend to give the good news over phone to put people out of the trauma of waiting. Really worried, not sleeping at all, the waiting seems so long.

User

Posted 22 Jun 2016 at 06:46

It will seem a very long wait to you Mountain Stream I know.

I hope whatever the news is, that it will be dealt with in the same efficient manner with your consultant on the ball, which he seems to be.

Good luck

We can't control the winds - but we can adjust our sails

User

Posted 22 Jun 2016 at 07:03

I have had mixed responses. I have had some results via the phone and then staff from the same Trust refusing to give me results over the phone due to policy even when the results were good. So it may be the person you spoke to is just following their policy.
Try not to worry

Bri

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