FIL just diagnosed

User

Posted 15 Jan 2016 at 13:03

Hi,

FIL has just been diagnosed with prostate cancer. It's early days and we are still awiating some test results from bone scans, bladder scans etc.

OH has spoken to macmillian and we have been told his gleason is 7 and his PSA is 21.

We have also been told that 96% of tissue is affected L and 50% R.

Think the above is pretty much what macmillian nurse told OH.

FIL is 70 and doesnt want to know what's going on so it's down to OH and myself to contact people/read up. He is a smoker, in fairly good health until this diagnosis.

Since the diagnosis, three weeks ago, he is becoming forgetful, not knowing what day of the week it is or what he did the day before, struggling to sleep and basically worrying. One minute he is chirpy and saying I'm 70, Ive had a good life so whatever happens, happens and the next minute he is withdrawn and fearing the worse.

Not quite sure why I'm writing but worrying if anyone has had similar results in the early days and could tell me what to expect next etc.

Thanks for listening from a worried DIL.

Edited by member 15 Jan 2016 at 17:04 | Reason: Not specified

User

Posted 15 Jan 2016 at 13:47

hi
know doubt the macmillan nurse will have told you certain things, the first thing is get the toolkit from this site it explains all you need to know on further treatment, with a gleason score of 7 I would expect some treatment will be ok but until all results are in its guess work

regards the sleeping and other issues this will more than likely be anxiety
some bury their heads for a while others tackle the diagnosis had on, it will take time so all you can do is be an information collector, make sure you always have writeing pad and pen at hand, go with him to see consultants

suggest you make an appointment to see your GP as they can offer support as well, its going to be a long journey with sometimes what you may think are impossable decisions

once you get your test results update your profile it helps us to understand and hold your hand the best we can, dont worry about anything you post someone will have been their and will offer help

regards
nidge

run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it'

User

Posted 15 Jan 2016 at 14:06

Veronique
what a beautiful name and how good are you to be looking out for your FIL.

Welcome to this forum, we are generally speaking a useful friendly bunch of people to chat with.

First things first, it is early days as you say and waiting for those test reults, finding out what lies ahead is a really deeply disturbing time for most men. No wonder you FIL is all at sea. Once he has more information and has had time to comprehend what it all means he will almost cetainly feel a little more in control.

There is a toolkit you can download from this website on the home page, it can also be posted out to you if you want a printed copy. It is extremely comprehensive and covers all the terminology, stages of this cancer giving a good explanation about how a Gleason score is given, what the different stages are and all potential treatments etc. Maybe you can use it to help you and your OH to understand more so that you can help your FIL.

In the toolkit there is a good diagram of what a man's prostate is, where it is and what it should look like. He has only one, basically in a healthy adult male it is about the size of a walnut but smooth and soft. It has two mirror halves which is why you have heard descriptions of left and right prostate.

So as a first step get this official toolkit, do not rely on Google searches as they are way too generic when you are not entirely sure what your FIL's situation is. These searches often cause more worry and in some cases fear than is necessary.

If your FIL is ok with it make sure somebody goes with him to all his appointments so they can make notes and help him to ask questions to get clarification. It is really hard for anyone to remember every word that is said in these meetings and that extra support can be really valuable.

Others will also come along and post although it can sometimes take a day or so.

I wish you all the very best
xx
Mo

User

Posted 15 Jan 2016 at 14:23

Thanks for replying.

I tried to persuade him to ring the doctors before but being his usual self he said it's not that bad I do get some sleep. Which is different to what he said the other day regarding sleep. It will probably take a few times off people trying to persuade him before he goes.

User

Posted 15 Jan 2016 at 14:51

Hello Veronique and welcome from me too.

70 isn't a bad age but he has a lot more life in him yet! My husband is now 75 having been diagnosed at around 72.

There isn't much I can add to what the others have already said. This is a very scary time for all of you, especially FiL.

Some men prefer not to know much of what is going on,my husband being one of them, but I would think that for FiL it is most likely the fear of the unknown which is why he is saying he's had a good life etc. He is already looking at the worst case scenario.

Just out of curiosity you say your other half has already spoken to MacMillan and that his Gleason is 7 for each side and PSA of 21. Did you mean that Macmillan said that. If so how did they know? Was it the information that your OH gave them?

As for why you are writing it's probably because you want support. Well you get it in spades on this site.

Whatever FiL or yourselves are feeling right now is the same feeling that we have all had. Some of us have lower PSA and Gleason scores, some have spread to the bones, but we all try to help each other to try and make sense of what is happening to our bodies.

Ask away any questions you all might have. Once FiL has a proper diagnosis he may well be able to get his head round it and be more positive. I hope so anyway.

All the best

Sandra

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

User

Posted 15 Jan 2016 at 17:15

Hi Sandra,

He's been given the details for a macmillian nurse who I think told OH she will be here for his dad throughout this time. FIL said he didnt want to know what things meant so OH asked if he can ring with any questions and speak to them on his dads behalf which they said yes.

OH had just nipped out when FIL was called in to see the consultant and so there were some notes scribbled on a piece of paper prior to OH going in and when he asked his dad he didn't know what they meant so he rang the macmillian nurse who explained how a gleason is scored and what the % meant and about the PSA.

Thanks to everyone else, hopefully a couple more weeks we will now more and meanwhile me on here and OH speaking to people we will gain a better idea of whats going on.

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