I'm just letting off a little steam

User

Posted 03 Sep 2015 at 10:36

Hello all. So, my first post. Had my diagnosis a week ago today & it was exactly what I didn't want to hear even though I'd tried to prepare myself for that as a possibility. So, that's the bad news. The 'good' news (I'm being positive here) with a Gleason (sp?) score of 6 (PSA was 8) I'm right at the lower end of scale. I'm now ploughing through the mountain of information on the options of where to go from here which is making my head hurt. I don't think there is any particular urgency to doing anything at this time & have my next test in 3 months so have time to try & inwardly digest it all, and try & learn as much as I can/need to so that I can make informed decisions on what/where to move next when the appropriate time comes. Well, that's the sensible, practical part of me speaking. Outside of that, and I suspect I'm not the first, right now I'm confused, bemused and struggling to concentrate (particularly at work). My wife is being great but I think she's more uptight about this than me. My GP & everybody else I've spoken with have been really good & explained everything as I've gone through the process though sometimes it hasn't always registered properly. Work has also been really supportive. I'd like to be positive (I'm not naturally a positive person though) but there's something nagging away at me. I'm not sure exactly what it is or how to explain it to anybody.

So, there you go. Probably a common tale around here. I really ought to be doing some statistics (work)...

User

Posted 14 Oct 2015 at 11:08

Hi Rich,

Ramble on as much as you like. I know it helps you feel better to write things down. Everyone on here will listen and offer support when they can.

Good luck with any treatment decisions you make.

Take care.

Steve

User

Posted 14 Oct 2015 at 11:19

Not a ramble at all Rich, you're just putting down your thoughts. They feel like you're rambling (to you) because you don't have definitive answers to, as yet, unasked questions.

As far as counselling goes, if you want to speak to somebody, then contact the nurses on here and either ask for advice or ask what they can recommend as far as counselling goes.

It may not be for you but some men on here join their local PCa group and find that very helpful. You'd be speaking to other people who can also tell you "been there - done that" and they, like us, will know exactly how you feel.

For no MRI or biopsy to be offered to you yet, is to my mind, a positive thing. It must mean that they feel you have plenty of time to make decisions.

Don't despair, it really is still early days for you and your wife yet and you haven't reach that stage where you can think of PC with a degree of equanimity or at least acceptance.

All the best
Sandra

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

Show Most Thanked Posts

User

Posted 03 Sep 2015 at 20:04

Hi Rich and welcome.
That's a great post and it seems you are doing everything the right way. Yes , by your results you def have time to digest ALL the info on here and in the toolkit you can order. Please read it. It's very very informative and should supply you with all you need. Also take the time to sift the community and ask ANYTHING at all you want. You'll get great instant replies from very knowledgeable people. I hope things go well for you
Chris

User

Posted 03 Sep 2015 at 20:24

Hello Rich from me too, wife of a man with PC.

My John's original PSA was around 6.3 with Gleason of 3+4= 7

Although the men on here all have Prostate cancer, they are many and varied in the severity and the way in which each man deals with the diagnosis.

You are still at the shock stage and your head is all over the place, as is your wife's.

Now first of all, you must both take a big deep breath and a step back from that great big hole you are staring into. A diagnosis of Prostate Cancer is not an immediate situation where all is lost. PC comes at many levels and many are treatable/curable so don't start thinking gloomy thoughts.

Cancer is a horrible and frightening word, but it's a disease not a death sentence

There are a number of men on here who have been told their prognosis is terminal but they get on and live their lives to the full and you haven't been given news like that.

You've got your Gleason score but you don't mention an MRI or biopsy. Have these been done too?

Your GP is supportive, but what about the hospital. As you have said your next test is in 3 months time I assume you have been told there is no urgency regarding treatment.

Could I just ask - was it the hospital you were referring to as your next test or is it the GP. I realise you probably mean from the hospital but just wanted to be clear on this point.

You don't actually mention hospital appointments with a consultant. Have you seen anyone. Did they suggest active surveillance to you?

Were you given any options, ie surgery, radio etc. All information is helpful for when members want to offer advice.

Chris suggests obtaining the toolkit and it is a very good idea. A set of booklets/sheets available free from the Publications section on here. Be careful of Googling too much. Stick to recognised sites, like this or cancer research.

There is a great deal of information on here, for both you and your wife. Ask anything you like. No question is a silly or obvious one, if you don't know the answer so ask away.

We have all been where you and your wife are now. We haven't all travelled the same treatment path but whatever you decide to do in the future, there will be men on here who can advise you because they will have already been there.

One thing for both of you to remember and think about - you are no longer alone because now you've found us.

Best wishes
Sandra

Edited by member 03 Sep 2015 at 20:27 | Reason: Not specified

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

User

Posted 03 Sep 2015 at 20:25

hi chris
your post makes a lot of sense, trying to make sense of what is happening to you takes a lot of time even then it doesn't always make sense. Our wives are great aren't they. and it certainly puts issues into perspective. good to hear about how your work is supporting you, some of the best people to talk to are the specialist nurses used them a few times myself
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 03 Sep 2015 at 21:19

Hello and welcome to the club no one wants to join, the people here are fantastic, the support is unbelievable...I'm similar to yourself in that I'm early in the journey and have just opted for surgery. Everyone is different in how they deal with PCa but just remember you (& your better half) are not alone, there's plenty of local groups too, take every opportunity to talk to people as it definitely helped me & Chris

Duncan

User

Posted 03 Sep 2015 at 21:23

Hi Rich,

Bad luck that you have been diagnosed with PCa but from what you tell us it seems to be at an early stage with good treatment options if you decide this is the way to go in the near future or later if you choose Active Surveillance for at least a time. I see that your Gleason score is 3+3 so you must have had a biopsy which answers one of Sandra's questions. What is very important is the staging which shows where the cancer is and how far advanced. This is where an MRI scan helps determine this.

Not having radical treatment soon gives you time to consider the pros and cons of various treatments and whether you would travel some further distance to have a variation not provided by your local hospital. Not all hospitals offer the various methods of surgery for example and brachytherapy is one of the forms of radiation not being provided in some hospitals is another example. However, some men want the cancer removed or treated early rather than just waiting for it to increase to a point where possibly radical treatment is advisable. So much depends on the individual and when and what suitable treatment is on offer. Other medical problems of a patient that could have a bearing on treatment must also be taken into account.

Do your research so you are well prepared for radical treatment at some point should this be necessary.

Edited by member 03 Sep 2015 at 21:27 | Reason: Not specified

Barry

User

Posted 03 Sep 2015 at 22:13

Hi Rich

Your initial diagnosis is not much different than mine. There are many decisions ahead but if you read my threads and history, you will see the route I took. Just over 2 years after diagnosis, I am getting on with my life and am really contented with my lot. You will find plenty of support on here.

Paul

Stay Calm And Carry On.

User

Posted 04 Sep 2015 at 13:17

Thanks all for the advise, suggestions, comments etc.

I'm finding it quite therapeutic simply conversing with people eg I though telling the people I work with would be awful but once I'd spat it out, I did feel a bit of relief. Here is particularly good as you all know/understand where I'm coming from :)

I did have a biopsy which only found problems on one side, but I can't remember if they said how many of the 12 samples. It was probably one of the most important conversations I've had but was instantly hazy on what got said. My understanding of my current position is I go back for PSA test in November, with an associated appointment, then at some point (possibly in the next year?) I get in an MRI. So, I'm now on active surveillance until/unless something changes. That's the consultants recommendation whilst I consider if/what to do next (if anything). This is all at QEHB(irmingham) which is very new so should have all the latest kit etc. They've been really first rate with my previous visits.

Thanks again. I'm off in search of the toolkit.

User

Posted 10 Sep 2015 at 10:25

The toolkit arrived & I've had a read through a couple of the sections. It's really good :) so thanks for suggesting that. I now have a much clearer understanding of where I am right now and I'm a lot calmer about the whole situation (as it stands today).

In time, but I have time, I need to consider the options that are likely to be presented to me, and be ready for difficult decisions, and the toolkit looks like it is going to become a well thumbed resource. I don't want to be making those decisions in a hurry & under any more pressure than is necessary.

User

Posted 10 Sep 2015 at 10:44

Just ask away Rich when you are ready !! Any problems , any advice . We are all here to help you I promise . Yes , get that info read over and over
Chris

User

Posted 10 Sep 2015 at 15:12

Welcome Rich, you've joined an incredible group of people and already you've received their marvellous support and advice. the way you feel is the way we have all felt when we're first given "The News". One step at a time is how I've managed to cope along with all the help and support from the others here. There's a lot to read and digest but it will be invaluable in helping you decide what's best down the line.

Take care and All The Best,

Cobbles

User

Posted 10 Sep 2015 at 16:44

Sometimes Rich, your subconscious will throw up a question. When that happens, write it down.

Before your next appointment, try and put the questions together so that you have them noted.

It's so easy to think "I must remember to ask that" and it's gone because life gets in the way

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

User

Posted 11 Sep 2015 at 20:46

Hi Rich, sorry that you are in the same club/boat as the rest of us but now that you are here and getting good advice already one tip I can give you is to stay positive, think positive and remain calm.

Another would be to talk and ask questions to get as much info as possible, keep your OH in the loop, work as a team to support each other as without a doubt, it helps take the strain.

There will be others giving good advice as and when you need it on here.

Best wishes to you and hope it's not too bumpy a path for you both.

Regards Chris/Woody

Life seems different from upside down, take another viewpoint

User

Posted 14 Oct 2015 at 09:37

It's been a few weeks now & I'm feeling in a very strange place. I've got my head around the diagnosis itself, the language used, the treatment options etc. I even think I'm understanding just where I am "on the scale" of seriousness ie towards the lower end. I'm also well on the way to having made a treatment decision (but still subject to guidance from the professionals when we get nearer the time). Right now though, I'm feeling very low about it all. I almost can't wait for my next set of tests (though I think that may be PSA only, so possibly not terribly informative). I'm going to ask about if/when an MRI will be used as I think that will take the understanding of (specifically) my situation to a new level (or am I being optimistic there?). Oddly, I've found telling people (selected family & friends) a bit theraputic, but I've done that now & life is "back to normal" I'm still trying to sort out some counselling - my GP referral was to somewhere who have said they can't really help (but are investigating to try & find somebody appropriate, so it's not a dead end yet). At least I'm concentrating at work better now (after a couple of weeks where I did very little).

Sorry for the rambling post. It's a help for me just to ramble on a bit (ask my wife).

User

Posted 14 Oct 2015 at 11:08

Hi Rich,

Ramble on as much as you like. I know it helps you feel better to write things down. Everyone on here will listen and offer support when they can.

Good luck with any treatment decisions you make.

Take care.

Steve

User

Posted 14 Oct 2015 at 11:19

Not a ramble at all Rich, you're just putting down your thoughts. They feel like you're rambling (to you) because you don't have definitive answers to, as yet, unasked questions.

As far as counselling goes, if you want to speak to somebody, then contact the nurses on here and either ask for advice or ask what they can recommend as far as counselling goes.

For no MRI or biopsy to be offered to you yet, is to my mind, a positive thing. It must mean that they feel you have plenty of time to make decisions.

Don't despair, it really is still early days for you and your wife yet and you haven't reach that stage where you can think of PC with a degree of equanimity or at least acceptance.

All the best
Sandra

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

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