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Gleason score split

User
Posted 14 Oct 2014 at 10:40

Just a quick update, my husband went to the GP today to discuss where he was at. He was able to find out that his Gleason score has been split as 5+3, so not the best news I guess? He has his MRI scan this Fri, but we still have no date for a bone scan. Does this mean we will not get a full diagnosis until this has been done? The general attitude seems to be not to worry as 'you've probably had PCa for years' so waiting for these appointments is not going to make much difference. However as his Gleason score has got 5 indicating aggressive as his first number, surely things should get moving with a certain amount of urgency?

What do others think, I know waiting time is not easy, but you can't help but worry!?

Miss

User
Posted 14 Oct 2014 at 11:15

Not the best of news. As surgery could now be ruled out ask to start HT to hold matters steady whilst you wait for results

Ray

Forgot to explain: some surgeons feel HT makes nerve sparring more difficult.

Edited by member 14 Oct 2014 at 12:06  | Reason: Not specified

User
Posted 14 Oct 2014 at 17:07

Hi Miss,
No, no full diagnosis until all tests are completed but has anyone told him that he will be having a bone scan or have you assumed it based on what you have read? Not all hospitals offer a bone scan routinely; ours does the bone scan only if there is reason to think it has spread. John only got one once it was clear that the surgery hadn't got it all and he was going to need salvage RT/HT - and even then I had to insist. Perhaps they will wait to see what the MRI shows before sending you a bone scan appointment?

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

User
Posted 14 Oct 2014 at 22:11

Hi Lyn
Yes the urologist told him to make an appointment for a bone scan as well as the MRI and gave him a relevent slip of paper for each. So do you think we will get a full diagnosis after this Fri MRI or will we have to potentially wait until the end of the month when he might by then have a bone scan? Ray suggested asking to start HT to hold matters steady while we wait for results?
Miss

User
Posted 14 Oct 2014 at 23:11

Hi Miss,

Waiting for results is probably the worst time , It is usual not to get the full diagnosis until all of the results are in , If I were you I would chase up the bone scan you could do this on Fri in person when your OH has his MRI or ring beforehand. Sometimes he who shouts loudest gets heard and although you shouldn't have to make a fuss , it does get things done.

 

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 15 Oct 2014 at 21:59

Hi all,

Got a letter in the post today (and an email & phone call from Macmillan nurse) to say that Bone Scan appointment which had been made for Oct 27th has now been brought forward to Fri Oct 17th, the same day as the MRI. Suddenly it's all systems go without having to shout all that loud, just a concerned phone call really. Maybe the Gleason split of 5+3 got things moving with a bit more urgency? It did make me feel concerned again though that if you don't chase things up in an assertive way things tend to drift, get missed, get mis-understood etc.I feel like I've got to really be on the ball to ensure that silly avoidable mistakes aren't made! Another added pressure, but very glad to be getting both done this Friday. It then sounds as if the following Thurs 23rd everyone gets together to decide on a course of action.

Miss

User
Posted 15 Oct 2014 at 22:29

Good news matters are moving forward somewhat quicker.

I had phone call on late afternoon saying biopsy result in come to hospital in morning. Started on Casodex there and then with C T scan (no MRI in my area then ) and bone scan shortly afterwards. Which was worrying but I later saw it as hospital can move quickly if they see a need

Good luck with scans

Ray

Edited by member 15 Oct 2014 at 22:32  | Reason: Not specified

User
Posted 16 Oct 2014 at 00:13

Hi Miss,

Glad things seem to be moving a bit quicker now.

Hope everything goes well for you.

Thinking of you both.

Steve

User
Posted 16 Oct 2014 at 07:16

Dear Miss

 

We too have found that you have to chase, chase, chase to get things done.

 

One of the best things that we found was getting the e-mail address of the Oncos secretary and getting everything done/chased through her.

 

Good Luck! Once a plan of action is in place you may feel a little better.

 

Alison

 

 

 
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