My Story PSA gone from 3.1 to 7.5 in a year

User

Posted 04 Jul 2016 at 11:02

REALLY IMPORTANT

Do not see an osteopath, chiropractor or masseur now until the rest of your diagnostics are complete.

I am not medically trained, I am just like everyone else here - I have had to learn in order to support my 3 men. I just happen to have a good memory for who posted what when, or which research team found what.

I note your family was affected by brain tumours in the past. We have a genetic predisposition to brain tumours so my family is very involved in fundraising that pays for a ££££ research project at Leeds Uni.

Edited by member 04 Jul 2016 at 11:21 | Reason: Not specified

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

User

Posted 04 Jul 2016 at 11:05

PS never been so insulted ... I am a proud Geordie who for my sins found myself married to a typical Yorkshireman

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

User

Posted 04 Jul 2016 at 11:40

Hi Lyn
Is that genuinely advised about massage ?? I've been getting a weekly massage at Wessex Cancer foundation , even though I have lymph involvement and suspected Mets!! She said it would be fine as it's more relaxing than deep therapeutic. X

Edited by member 04 Jul 2016 at 11:41 | Reason: Not specified

If life gives you lemons , then make lemonade

User

Posted 04 Jul 2016 at 11:44

OK Lyn, I will take your advice and cancel the Osteo....Just wanted to be a bit pro-active rather than just sitting about whingeing.....Sorry for the "Yorkie" insult should have known you were a geordie from the pack of tabs in the sleeve of your T shirt http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

User

Posted 04 Jul 2016 at 16:57

Originally Posted by: Online Community Member

Hi Chris, massage delivered by a cancer specialist, hospice day centre, Macmillan / Maggie's volunteer is fine ... it is massage or manipulation by someone that doesn't know about cancer and mets that we need to stay away from.

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

User

Posted 04 Jul 2016 at 17:01

Originally Posted by: Online Community Member

OK Lyn, I will take your advice and cancel the Osteo....Just wanted to be a bit pro-active rather than just sitting about whingeing.....Sorry for the "Yorkie" insult should have known you were a geordie from the pack of tabs in the sleeve of your T shirt[img=http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif]

Well just imagine for a moment that you did have spinal mets - an osteopath or physio comes in and starts crushing and manipulating you, and puts pressure on an area which is already brittle. Devastating and possibly permanent damage. Best to wait until you have your results and then get advice on who, what and where you can go for help with whatever is causing the pain. John had to get confirmation that both his physio and chiropractor had additional training in oncological matters, and that was after he had a clear bone scan.

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

User

Posted 04 Jul 2016 at 17:22

Lyn is right. My hospice gives me Reiki but will not allow guys with mets to have a massage

Tony I saw your post on YANA I find it quite disappointing to see a long standing member state

: you would be the first person ever to have metastatic disease with such a low PSA (yours being 7,5) :

My best wishes

Don't deny the diagnosis; try to defy the verdict

User

Posted 04 Jul 2016 at 17:41

Nooooo, really? Who could forget you Si???

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

User

Posted 04 Jul 2016 at 17:53

I am not bothered about me, its reading a load of Boll**ks that annoys me

Don't deny the diagnosis; try to defy the verdict

User

Posted 04 Jul 2016 at 18:00

Si and Lyn, I know you didn't mean to but you have scared the life out of me now....I am going to withdraw from this forum before I frighten myself to death....Thanks for everybody who tried to help

User

Posted 04 Jul 2016 at 18:49

Si, I wasn't having a go at you at all, you've obviously been through the mill and my heart goes out to you....I am in a very bad place at the moment....I am basically terrified of what my Dx is going to be....and to be reminded that a low PSA can throw up that sort of Dx just makes me feel very very sick.....especially as I could have gone to the hospital over 2 years ago at PSA 3.1....(would that have had a better outcome? who knows?)....I know PCa doesn't play by the rules and that one man's 40 can be less bothersome than another man's 6....But I just keep reading the tarot cards and seeing "the hanged man"...I look at your treatments and don't think I'm mentally strong enough for that kind of regime.....You spooked me is all....Not your fault
Regards

User

Posted 04 Jul 2016 at 19:04

It is hard to know what to do - in your case, we can't do right for doing wrong. You are clearly all over the place at the moment - it might be hard to remember that every single person on this forum has been where you are - and we have all tried to reassure you that with your scores and at least 2 practitioners that don't believe you have a problem, you are unlikely to be in that rare minority. However, it would have been remiss of me not to warn you against visiting the osteopath; you are impatient and if you haven't worked out that you need to exercise some patience now and wait for all your tests then yes, it might be better for your sanity to stay away from ALL internet info until you know what's what. But don't kid yourself that it is best to stay away from us and then spend all your time with Mr Google - he doesn't know what he is talking about.

I hope to see you back again sometime, just to let us know you got the all clear.

Edited by member 04 Jul 2016 at 19:05 | Reason: Not specified

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

User

Posted 04 Jul 2016 at 19:23

Lyn, please believe I wasn't having a go at either of you.....You have been especially kind, taking the time to answer my questions large and small.....But in my heart of hearts I know that what I really want is someone to tell me definitively that I don't have PCa....Or if I do its a gleason 6 T1...I keep making little deals with a god I don't believe in...I'm sure I'm not the only one who has been there....but at the same time I don't want this sugar coated......Sometimes you just can't win.....You're right Lyn I have never been patient at the best of times and having to wait for the outcome of this is just mentally draining (know I'm not the first)

I'll hang around if that's OK....What else is there to do??http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif

User

Posted 04 Jul 2016 at 20:05

Hi DrDre

You know that no one here is able to tell you what your diagnosis is, you have to wait, there is no other way. Really the best thing is to put it to the back of your mind if you can, stop searching the Internet (we all did it of course) and just wait. All this imagining what ifs, what's the point? Someone on here once said "don't cross the anxiety bridge until you have to" that's been a great help to me and I've stopped trying to anticipate the next move and just wait and see. I'm often pleasantly surprised.

Lyn and Si are right about massage, our hospice doesn't allow it either and it certainly isn't recommended and in fact, if you mention you are being investigated for cancer, most would not touch you either,

I think it's highly unlikely you have spread cancer, and once you have your results you will calm down. It's a terrible time for all of us here, the waiting and wondering. Most of us deal better with the known rather than the Unknown.

Please let us know how it goes, the worst will soon be over.

Cheers

Devonmaid

User

Posted 04 Jul 2016 at 23:30

Devon maid.....I came here hoping for people's experiences and advice, and have had that, and ultimately I know that only Doctors can diagnose me......I have now convinced myself that I have Mets because of the sudden hip and back pain.....I was hoping that all my "research" would prove that it is impossible at those numbers, but it isn't....it may be unusual but impossible no....I am a grown man and have spent all evening weeping and railing against the gods that have led me here....plus my own stupidity at not allowing the doc to refer me 2 years ago....I have read your husbands profile and my heart goes out to you both.....I know that if push came to shove I could not possibly endure that kind of regime....I am not brave enough.....the constant testing and waiting for the next set of results would send me madder than I am now....hence the crying.....my wife is being positive and strong for me but like someone who has been cursed by a witch doctor and because he believes the curse succumbs to it, all the fight (if I had any) has left me......rightly or wrongly I have made my mind up to my Dx and it's not good......Irrational I know....go figure....I know that once life gives you the lemon you're supposed to make lemonade, but I can see no upside to being in this position......Sorry to be so negative.....Not trying to bring anyone down, just the way it is
Regards

User

Posted 05 Jul 2016 at 06:22

I was once told that at the hospital when you go to see the consultant there should be another door with the title paranoia on it. We have all been tempted to walk through that door on occasion.
When you suddenly face something like this you naturally start thinking every ache and pain is associated with cancer. The stress exaggerates it and in some cases causes the aches.

I have walked your path as has everyone on here, its not easy but it does get easier.

I had an aching back and hips....was it stress or was it due to a tumour in my prostate...i dont really know.

Why dont you give the nuses at PCUK a ring...they may be able to offer you some reassurance.

Bri

User

Posted 05 Jul 2016 at 08:24

People get scared when a diagnosis is in the offing but it does not help to think and project only worst case scenarios, in fact better not to speculate at all as it is clearly leading you into a horrid place. Remember your wife may be supporting you but might need some reassurance too.

As others have said your PSA and your slow rise would normally indicate a reasonable outcome. Si's result and mine too (7.5 with bone mets) means it's not certain but recently I talked to someone with PSA in the 100s, no spread, Gleeson 7. It's no certainty either way so get tested!

So calm down, take a deep breath and think positive thoughts!

User

Posted 05 Jul 2016 at 12:03

Thanks guys, appreciate your posts

Tony

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My Story PSA gone from 3.1 to 7.5 in a year

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