Prostate Cancer Survivors

 

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Re: Help for a worried Newbie

Hi Lyn, Thanks...To say I am concerned would be an understatement
Just a waiting game I guess
Regards
Tony

Re: Help for a worried Newbie

Sorry to see you in such a quandary over this. We always like to find a logical explanation for what you are going through and hope it is not the dreaded PC. You are going through what so many have in the past. If you are the worrying type, there is no cure for that - I am one also so I fully understand. This is something to be concerned about, no doubt about it. We all hope it is an infection etc. but must be aware that it could be something more serious and if it is, we must get on top of it. I am surprised no biopsy has been suggested by the dr. As said, it is not a procedure to be taken lightly but is often a necessary evil. It too is not fully conclusive unless of course it finds cancer, in that case your course is set. Your PSA is not sky high but it is high and needs an explanation. Not to scare you but to keep you aware, my PSA was 6.8 and the cancer was advanced to the point where nerve sparing was not possible and one seminal vesicle was already involved. You will find some very knowledgeable folks on this site to listen to and form your own conclusions from. As you have already found, there are conflicting "facts" in this arena and the more you learn, the more confusing it can get. Drs. generally have a good handle on what the facts and tendencies are in this arena but are not always good at sharing and communicating that with patients. You need to ask specific questions and let them know you need to know the bare truths. Jon.

Re: Help for a worried Newbie

Hi Jon, thanks for replying....Doc is concerned this was my first PSA for 14 months (I stupidly got complacent after 3 same readings of 3.1 so blindly carried on until I developed this nagging backache....Doc has referred me to a urologist should be going within the next 2 weeks
Thanks Tony

Re: Help for a worried Newbie

You would be the first person ever to have metastatic disease with such a low PSA. (It can happen in late stage disease where the PSA has been shooting up, 100+, and down.) They usually won't even give you a bone scan to find out with a PSA so low.

Re: Help for a worried Newbie

Hi Frank, Thank you for the reply....As everybody tells me I shouldn't be on google doing this stuff, it's the equivalent of my old granny looking through the medical directory and convincing themselves that they have typhoid, ebola and anthrax....I am sure that I did see one of the sites where somebody did have mets with a 7.5 PSA, but I'm not even going to try to look it up to prove some spurious point.....because need less to say I don't want it to be so....Everybody here and the prostatecancer uk forum that I have posted to tells me the same (I of course wouldn't expect them to tell me "You've only got 2 weeks to live")....But no point asking the "experts" and then flying in the face of it.....I assume there's no chance of my PSA shooting up into that danger zone and then coming back down is there? The PSA test is only a "snapshot" of your condition at the time after all...

Many thanks for taking the time to reassure me....Hope you're healing is going well

Regards

Tony

Re: Help for a worried Newbie

"I assume there's no chance of my PSA shooting up into that danger zone and then coming back down is there?"

No. The prostate cancer cells are almost not prostate cells at the point they stop producing PSA. It usually happens after quite a few years of ADT. (That said, you could always be that one case that does something never seen before but your chances are far greater of getting killed by lightning than metastatic disease at this point.)

Re: Help for a worried Newbie

Frank, I had been out with friends yesterday for the first time since my PSA test....came home feeling fairly upbeat as had had a good day....a few beers and laughs....read your post which really helped my mood
Sadly I then spent the evening doing more "research" ...I live in the UK and there is a charitable organisation (prostate cancer UK) they have a website with lots of info and they also have a forum....I joined a few days ago and posted my story and have quite a few replies from good people like yourself trying to allay my fears...One lady in particular is a regular poster (her husband is the sufferer) she seems very knowledgeable on all matters medical and prostate....She also has replied to me several times and is very practical...Sadly I was reading one of her posts in another thread whereby a wife was concerned over her husband's high PSA of 16.....she was trying to allay her fears by explaining like yourself that PSA is not always indicative of PCa...she then went on to say that there were people on the UK forum who had had readings of 20/30 who were cancer free and then there were people with readings of 3 who were advanced and with bone mets....which as I said I had seen posted somewhere else....Cue more panic and the downward spiral again....I know that before I get checked out and DX'd one way or another I shouldn't keep squeaking, but I have convinced myself that I am doomed and like somebody Hexed by a Witch Doctor who believes in the curse I feel I am going to succumb

I cannot see myself ever having a joyous day again....and I am driving my poor wife crazy....just going to have to wait and see I guess, but it's going to be a long time coming
Thanks again Tony

Re: Help for a worried Newbie

Tony, your PSA has been slowly moving up over the last 10 years. If you had aggressive disease you would already be dead. The worst that will happen is you will need treatment(s). I've had them and for me the worry was worse than the treatments.

Re: Help for a worried Newbie

Hi Frank, Believe me I want to believe that....My history of PSA was
Feb/06 1.2
Then a large gap until I presented myself at docs with my increasing urinary frequency
April/14 3.1
August/14 3.1
April/15 3.1
June/16 7.5

It's that rapid rise in just over a year that's blowing my mind.....But I have decided to book myself in to a chiropractor to find the cause of the back ache (hopefully muscular) and then that may take some of the anxiety away

Thanks again for talking me off of the ledge & happy 4th July

Tony

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