Indeed KRO and here I am !! It must look like I have nothing else to do but be ready to meet and greet new members
Hello Mike and welcome from me to
As both KRO and Vivienne have said worrying doesn't help but is bound to happen when you don't know what the problem is.
It isn't definite that you have
a) Prostate Cancer (although I can understand your thinking)
b) That it has spread. The tingling may well be associated with something else
c) If it IS cancer then it may well be the pussycat version which is a slow grower and there will be plenty of time for curative treatment.
There are quite a few men on here with incurable prostate cancer. Note i say incurable - not terminal. The end result may well be the same but any one of us could die of something else. There is no timeline for the worst to happen to any of us.
Prostate cancer treatment has come on in leaps and bounds over the years and many trials are available to men who are prepared to undertake them. This gives them a chance to be closely monitored while undergoing experimental treatment.
If this is cancer then there is nothing you can do about it until it is confirmed and worrying about it will continue to cause you sleepless nights.
You only have until Monday for the PSA results, which is very good. Some on here find it difficult to get a PSA at all let alone a fast result.
When you get your appointment you are likely to see a urologist who will repeat the DRE and then suggest a biopsy. These are uncomfortable for most men, occasionally a real pain in the backside for others , pun intended.
However, without the biopsy and possible MRI the consultant will not be able to get a full picture of what is happening.
Have a look a the Toolkit that KRO mentioned. It might help you form questions you want answered and which are best written down before you go. Take your wife with you for a second pair of ears as there is a lot to take in and jot down the answers.
You can speak to a nurse on here for reassurance on their Hotline number 0800 074 8383. You can also order a hard copy of the Toolkit from the nurses.
Waiting is the hardest part. We've all experienced it and all feel like you and your wife are feeling now so we really do understand.
Try and keep calm and try and get some rest.
Once you have any results please come back and tell us so that somebody can advise you.
The only thing I would say is that if eventually the consultant asks you to make a decision regarding treatment and says you have time to think about it, then weigh up the pros and cons before opting for anything drastic. You do, after all, have to live with the results for the rest of your life.
Best Wishes
Sandra
*******
We can't control the winds - but we can adjust our sails |
User
KRO, Viv, Johsan,
Thank you so much for your great replies. Really helpful for me right now. Will certainly get the toolkit.
I do tend to think the worst about medical matters and while that is maybe ok for expectations management (i.e. increasing the chance of a relatively pleasant surprise) it is no good at all for managing myself through this limbo period pre-diagnosis. I've worked myself up (or should I say down) into no end of mawkish stuff. Done everything except pick the funeral music! Totally not a productive use of time.
I remain super fearful though (I do have rather a bad vibe about this one), but let's see. I will try and keep as upbeat and positive as I can until the next thing happens. When it does I will definitely be back with an update. So early next week probably.
Any case, feeling quite a bit better as we speak. Weather really nice, couple of beers maybe, dinner, early night. Yep.
Sleep is my main practical issue at the moment. I just have to get a few decent hours in. I've gone and got some sleeping pills (a first for me) and I plan to pop one tonight. Hopefully that will do the trick.
Thanks again and catch you later.
cheers, Mike
User
Ok I have received my PSA result.
It's great news. 0.43. That compares with 0.32 back in Feb 2014. This one was taken straight after DRE, which can elevate slightly, so basically no change - my level is stable and at the low end of the normal range.
Based on all of my reading up on the subject (which has been extensive!) a PSA profile such as this puts the odds very substantially in favour of a non-cancerous explanation for my sporadic urinary symptoms and my 'smooth but odd shaped' DRE finding.
So a big big :-) on getting the result and my anxiety level has dropped considerably.
I still have my urology referral however on the basis of the abnormal DRE. It's happening next week and I remain concerned. I don't want to just assume that this is nothing serious (the DRE is abnormal, after all, and I do have those urinary issues) before getting confirmation that that is indeed the case. Stay worried, but not sick with worry - that's the frame of mind I'm shooting for.
Really have appreciated the messages and the info/advice to be found on here. Thanks again for that. I will return with an update after I've been processed by urology.
cheers, Mike
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User
Hi Mike,
Welcome to the Site - Johsan will probably be along soon to give you the full welcome .... (sorry Johsan http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif.)
The referral that your GP mentions will probably be to a Urologist and further investigation will probably be MRI and/or Biopsies - some consultants do MRIs first some do Biopsies first. This may then lead to other stuff such as bone scans if necessary.
It is not until all these preliminary tests and investigations are done can you be given a diagnosis. Until then it is only human nature that you will worry and, at times, get stressed- it's a scary time! Easier said than done I know, but you should try and "calm" or, as is happening already, you will lose sleep and become even more stressed and "ill".
This site has a number of publications that will be useful to you - including the "Toolkit" which can be downloaded or ordered - just look for the"Our Publications" link.
There is also a link to specialist nurses who will listen to and help you with anything that you want to discuss - they really are good!
Good luck with the PSA test and future stuff.
Take care..
KRO...
User
Hi Mike
i am the daughter off someone with P/C and you have def come to the right place, I bet your emotions will be all over the place at the mo and with the lack of much needed sleep will just be adding to all this stress, My dad has/had cancer that has breached the gland and is currently recovering from surgery at the mo, the consultant is aiming for a cure so please please don't despair, there are so many treatments available for P/C these days, The early days before full diagnoses is just the worst !!! But once everything settles down and you have been given a treatment plan (that's if it is even cancer) I bet you will feel more reassured, you will find so much support and understanding from
Everyone on here,
Viv X
The only time you should look back is to see how far you have come
|
User
Indeed KRO and here I am !! It must look like I have nothing else to do but be ready to meet and greet new members
Hello Mike and welcome from me to
As both KRO and Vivienne have said worrying doesn't help but is bound to happen when you don't know what the problem is.
It isn't definite that you have
a) Prostate Cancer (although I can understand your thinking)
b) That it has spread. The tingling may well be associated with something else
c) If it IS cancer then it may well be the pussycat version which is a slow grower and there will be plenty of time for curative treatment.
There are quite a few men on here with incurable prostate cancer. Note i say incurable - not terminal. The end result may well be the same but any one of us could die of something else. There is no timeline for the worst to happen to any of us.
Prostate cancer treatment has come on in leaps and bounds over the years and many trials are available to men who are prepared to undertake them. This gives them a chance to be closely monitored while undergoing experimental treatment.
If this is cancer then there is nothing you can do about it until it is confirmed and worrying about it will continue to cause you sleepless nights.
You only have until Monday for the PSA results, which is very good. Some on here find it difficult to get a PSA at all let alone a fast result.
When you get your appointment you are likely to see a urologist who will repeat the DRE and then suggest a biopsy. These are uncomfortable for most men, occasionally a real pain in the backside for others , pun intended.
However, without the biopsy and possible MRI the consultant will not be able to get a full picture of what is happening.
Have a look a the Toolkit that KRO mentioned. It might help you form questions you want answered and which are best written down before you go. Take your wife with you for a second pair of ears as there is a lot to take in and jot down the answers.
You can speak to a nurse on here for reassurance on their Hotline number 0800 074 8383. You can also order a hard copy of the Toolkit from the nurses.
Waiting is the hardest part. We've all experienced it and all feel like you and your wife are feeling now so we really do understand.
Try and keep calm and try and get some rest.
Once you have any results please come back and tell us so that somebody can advise you.
The only thing I would say is that if eventually the consultant asks you to make a decision regarding treatment and says you have time to think about it, then weigh up the pros and cons before opting for anything drastic. You do, after all, have to live with the results for the rest of your life.
Best Wishes
Sandra
*******
We can't control the winds - but we can adjust our sails |
User
KRO, Viv, Johsan,
Thank you so much for your great replies. Really helpful for me right now. Will certainly get the toolkit.
I do tend to think the worst about medical matters and while that is maybe ok for expectations management (i.e. increasing the chance of a relatively pleasant surprise) it is no good at all for managing myself through this limbo period pre-diagnosis. I've worked myself up (or should I say down) into no end of mawkish stuff. Done everything except pick the funeral music! Totally not a productive use of time.
I remain super fearful though (I do have rather a bad vibe about this one), but let's see. I will try and keep as upbeat and positive as I can until the next thing happens. When it does I will definitely be back with an update. So early next week probably.
Any case, feeling quite a bit better as we speak. Weather really nice, couple of beers maybe, dinner, early night. Yep.
Sleep is my main practical issue at the moment. I just have to get a few decent hours in. I've gone and got some sleeping pills (a first for me) and I plan to pop one tonight. Hopefully that will do the trick.
Thanks again and catch you later.
cheers, Mike
User
Mike
The others have said it all really. I do know that some men handle it "better" than others, by that I mean go quiet rather than talk about it. I think it's healthy to talk about it but not to catastrophise in the absence of proper information. The fact the DRE was abnormal isn't good, but let's hope it's in the gland and not spread. I seem to recall that when we went through that process, which seemed to go on for weeks, we simply didn't look far forward at all and kept an open mind. One of our forum members used to talk about not crossing the anxiety bridge until you have to, I try to remember that one as it did help me though I can't promise you that I stay calm all the time!
Even in a pretty dire situation like my husband's case, Gleason 10, multiple mets, he's done really well and is still with us nearly six years on. No one knows how this disease will affected you, if you do indeed have it. So assuming the worst isn't really sensible but I do understand it.
You've entered a new world, your life does change if you do have cancer, but some of those changes are ok (whilst many are not of course). Fingers crossed you have been found early, it certainly sounds like it.
Please let us know your results.
Lots of love
Devonmaid
User
Hi there Devonmaid,
Thanks a lot for the message and the info. Finding the knowledge and comms on this forum to be a real boon.
'catastrophise' - I like that word :-) ... and yes it's exactly what I'm prone to. Much better to take each step as it comes and I am resolved to try my very best to do that from now on. Ditto my wife, for whom this is just as tough as it is for me. Perhaps tougher actually.
Your husband sounds like he's done brilliantly from a highly unpromising start position. Very good to hear that.
So, next thing for me, Dr to call on Monday with PSA result. I'm being referred anyway (based on my 'smooth but odd shaped' DRE plus urinary symptoms) but I'm nevertheless hoping very much that the level is not really high - since I know that while not definitive or proof of anything, the PSA level now compared witb my normal reading of 2 years ago, will be an important pointer to what I can reasonably expect from the rest of the diagnosis.
Fingers (and everything else that one can physically cross) crossed!
cheers, Mike
User
Hi Mike just wanted to say hello and good luck for Monday. Hope you have managed to get some sleep it is a really worrying time but once you know what you are dealing with it seems to get easier as you actually feel you are doing something also please call the helpline the nurse's are fantastic. Jayne
User
Hi Jayne, thanks a lot for the message.
Yes I'm sleeping ok now thanks (with a pill) and that has made a big difference. Feeling calmer than I was a couple of days ago.
Main thing I'm fretting about is that my DRE alone ('odd shaped') was enough for my Dr to refer me, regardless of how my PSA test comes out. No humming and hahing either - just 'we have to get that checked out'.
Would feel more sanguine if it was simply enlarged (likely BPH) or was painful to the touch (likely prostatitis). But 'odd shaped' and easily detectable as such by a GP on DRE ... that plus 3 years worth of urinary issues ... I can't help thinking that PCa (and not early stage either) is by far the most likely explanation.
Still, totally agree that it's pointless second guessing. Tomorrow I should get the PSA result. Hoping like crazy that it's not high.
cheers, Mike
User
Hi Mike will be thinking of you tomorrow. My husband's DRE x 3 all normal, only indication back pain admitted to A&E with E Coli so although PSA 13 all indications were UTI even Consultant v surprised on findings of biopsy all 12 cores positive. Thankfully our GP on ball from the start so until you know all the results dont take anything for granted easier said than done I know. My husband 51 had RP December 2015 doing quite well results v positive, no incontinence issues, gets tired v easily and as for intimacy work in progress. Keep us updated. Jayne
User
Good luck today Mike. Will be thinking of you
********
We can't control the winds - but we can adjust our sails |
User
Ok I have received my PSA result.
It's great news. 0.43. That compares with 0.32 back in Feb 2014. This one was taken straight after DRE, which can elevate slightly, so basically no change - my level is stable and at the low end of the normal range.
Based on all of my reading up on the subject (which has been extensive!) a PSA profile such as this puts the odds very substantially in favour of a non-cancerous explanation for my sporadic urinary symptoms and my 'smooth but odd shaped' DRE finding.
So a big big :-) on getting the result and my anxiety level has dropped considerably.
I still have my urology referral however on the basis of the abnormal DRE. It's happening next week and I remain concerned. I don't want to just assume that this is nothing serious (the DRE is abnormal, after all, and I do have those urinary issues) before getting confirmation that that is indeed the case. Stay worried, but not sick with worry - that's the frame of mind I'm shooting for.
Really have appreciated the messages and the info/advice to be found on here. Thanks again for that. I will return with an update after I've been processed by urology.
cheers, Mike
User
Thanks for the update Mike.
Once you have seen the urologist you will have a firmer idea of what the problem may be.
Whatever that maybe, it's good that the PSA hasn't risen drastically. Fingers crossed that all is well.
Best Wishes
Sandra
********
We can't control the winds - but we can adjust our sails |
User
Hi Mike really positive news. Keep updating. Jayne
User
So pleased to read this Mike