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Posted 7/1/2016 6:44 PM (GMT -5)

compiler said...
Tony:

SO WHAT???!!!! Advanced PC would have a MUCH higher PSA.

I have yet to see anyone here with your level of PSA having symptomatic advanced PC.

In fact, there is a rare form of aggressive PC that puts out very little PSA (like below 1).

Either way, you're apparently in the clear.

We are not doctors, of course. So, follow up medically, but you are driving yourself nuts for no reason.

Anyway, good luck and keep us apprised.

Mel



Mel

Mel,
Your correct there is an aggressive form (IDC-P) which I have but if you also have PC in addition then you can have a PSA marker for one and not the other. Crappy situation really.....PSA goes down from treatment for PC but no one knows for certain whats happening with the IDC-P since there are no known markers.

Todd
Posted 7/1/2016 11:24 PM (GMT -5)
When I was diagnosed I also developed back pain and sciatica.

A neurologist diagnosed my back with moderate to severe compression. (I think the word "severe" was used on 2 different dics).

However, once it was clear to me it wasn't cancer it's not hurt at all. Not once...ever... since. (Even with so called "severe" compression).

Go figure.

Hang in there.
Posted 7/1/2016 11:41 PM (GMT -5)
Hi Island Time, I suppose my mind could be imagining the sciatica, although it feels mighty real....(cue for a song) I know that I am very anxious at the moment, as I'm typing this I can feel the tension in my upper body....Thanks for the post, it all helps to talk.
As for Hilander 64 sorry to hear about your PC......I'll be hoping that's rare enough to exclude me (wont go looking for more windmills to tilt at
Posted 7/2/2016 12:03 AM (GMT -5)
I get it between my shoulder blades. It's amazing what a good deep tissue massage does for it...


Fwiw... (It's worth what ya pay for it)...you don't have metastasized prostate cancer. One man's opinion.
Posted 7/2/2016 12:30 AM (GMT -5)
Hi Island time, thanks for the reassurance.....Never thought of myself as the panicky/overreacting type but who knows?....I guess that most people when they think they may have cancer assume it's worst case scenario until they hear otherwise.....It's how you cope with what life throws at you I suppose. Guess I've always been a control freak and suddenly here is something that,s VERY personal that I have no control over.
Uro appointment within next 2 weeks so I'll just have to sweat it until then....Then I imagine it's tests, questionnaires before a possible biopsy and then more waiting.....I cant wait :-)
Regards
Posted 7/2/2016 12:43 AM (GMT -5)

tonyqueue said...
here is something that,s VERY personal

LOL yeah...that it is

Nothing will change either way in 2 week's time.

Hang in there.
Posted 7/2/2016 7:27 AM (GMT -5)
Tony, yeah, the gorilla is in your head throwing things around and generally making a mess. What I found, in my case, was that when it came to making a traetment decision (you're NOT there yet, and my not be there ever), when the decision was made was when I relaxed. Walking into the hospital on surgery day was almost totally non-stressful (except for having to find where I was going between 4 different buildings covering several city blocks).
Posted 7/2/2016 10:41 AM (GMT -5)
Hi Halbert, My Gorilla will whip your Gorilla anyday. It's not the tests that faze me, but the results confused
Have returned home today to a letter informing me that I am booked in for a flexible cystoscopy at my hospital urology unit on 12th July......Sounds like fun. smilewinkgrin Guessing they want to see what the bladder and prostate look like....Anyone reading this who have had this procedure, if they'd be so kind to give me the benefit of their experience......I'm not squeamish and I just want to get this mystery solved .....
Posted 7/2/2016 11:04 AM (GMT -5)
Never had a cytoscopy....heard of it, doesn't sound fun at all.
Posted 7/3/2016 11:38 AM (GMT -5)
I had one that confirmed my need for a Turp. They are working on a area that is never supposed to be worked on. They gave a xanax first and then squirted anesthesia down the urethra. The scope is not felt and you can see what the doc sees. In my case my opening was so small due to BPH (my prostate was 137) that I felt a little discomfort when the doc pushed into the bladder. Mine was done in the dr's office. They can see how much the prostate has closed the urethra but they do not actually see the prostate. In no way does this produce evidence of cancer or the lack thereof. Between the subsequent TURP and the finesteride I have been taking for over two years my prostate size is now down to 30 and I can pee like a 20 year old.
Posted 7/3/2016 12:21 PM (GMT -5)
Hi Shiny Top, so in your case were they just looking for evidence of BPH/Prostatitis? and what made them decide to do a biopsy?
Thanks for replying
Tony
Posted 7/3/2016 12:32 PM (GMT -5)
In my case I had a biopsy well before the cytoscopy. I was and am in Active Surveillance at the time but the doctor and I discuss different treatments should it become necessary. Due to other health concerns surgery is not a good option for me so we discussed radiation. Radiation can cause irritation of the prostate thus further closing the urethra. Since I was already taking up to two minutes to partially empty my bladder the dr performed the cytoscopy to make sure I could do the radiation without having to be catheterized frequently. It was determined I could not so he performed the TURP. A TURP is not a comfortable procedure but almost two years after I am very glad I had it done.
Posted 7/3/2016 12:41 PM (GMT -5)
Here in the UK we have the good old National Health Service, which can be a bit of a lottery, Some hospitals and docs outstanding. others not so. I imagine even in the states you have to weed out the gold-diggers and charlatans but at least you can shop around....Here you just have to be lucky where you live or where you are sent.....If I ever get as far as ops etc Our hospital has a surgeon who does all the RP's who was a resident for 2 years at Sloan Kettering...Hopefully it doesn't get that far.
So I assume you have still got a partial prostate and now have a G6.....More AS I assume?
Can I ask what your PSA was at DX (If you don't mind)
Thanks
Posted 7/3/2016 12:51 PM (GMT -5)
Definitely, will not go to treatment until the Gleason score rises. At 68 I have a decent chance to not have any of the side effects of treatment before I die from something else. But if my Gleason rises I will have to choose between the different radiation treatments. Seeds are ruled out since I had a TURP. Have not completely understood the why of that but all sources seem to agree.
Posted 7/3/2016 1:32 PM (GMT -5)
Thanks, those stats look "Good" if that word can be used in this context....Keep beating myself up because Doc offered me referral 2 years ago when my reading was 3.1....I made a deal that I would have 6 month testing, and next 3 all 3.1.....got complacent and left it 14 months and then the nasty surprise of the 7.5
No good beating myself up now, That ship has sailed....I have now become a Prostate evangelist....spreading the "Gospel" to every man I know
Regards
Posted 7/3/2016 3:02 PM (GMT -5)
tony, even at 7.5, you could be classed as 'relatively low risk'. We've had men here who presented with PSA readings in the 700's, or even into the thousands.

And, as regards the evangelism: There are two pieces to the evangelism. Piece one is telling men to get checked. Regularly. And then to teach them what the numbers do--and most importantly--DO NOT mean. PC is possibly the least ugly cancer you can get. Caught early, the man has every chance of living a long time and dying of something else. Even when it's caught late and ugly, the long term prognosis is still darned good these days.
Posted 7/3/2016 7:57 PM (GMT -5)
Halbert, I hear what you're saying, but still cant help thinking had I gone and been checked 2 years ago it would have been a far better idea. I was under the impression that 3 was a "Safe" limit.....I know different now....
Regards
Posted 7/3/2016 8:11 PM (GMT -5)
Tony, the reality is, that is so misunderstood, is that PSA is not a cancer test. It is a test of prostate activity, some researchers have used the term, "it's your check engine light". It means something is happening, and the odds that it is cancer that needs treatment are fairly low--way lower than 50%.

Which is why more testing is needed before you freak out.

There is history. Back in the mid-80's, when PSA was developed as a test, it was seen as a prostate cancer test--and many men were treated unnecessarily. Since then, sanity--and better diagnostic protocols--have been developed, and overtreatment is happening much, much less than it was 20 years ago. This isn't to say that it doesn't happen, it does. I know it's easy to say 'don't panic' and hard to do--but that's what has to happen.
Posted 7/3/2016 8:58 PM (GMT -5)
Halbert, I know you have said that you have also been an obsessive worrier, soknow where I'm coming from. Despite everybody saying DONT google I find difficult not to. It's currently 3.00am in the UK and I can't sleep. Had several posts from people here and on the "you are niot alone" site which have made me feel better regarding my "relatively" low PSA score, especially with my concern over cancer spread......Had several people tell me that metastases doesn't ocvur until levels much higher, but just looking on the uk prostate cancer forum reading posts and there is a frequent poster who seems very knowledgeable answering someones concerns talking of the vagaries of the PSA test and says that she has known people eith PSA in the 20/30s with no cancer and people with a reading of 3 with metastases.....Now freaked all over again with my nagging back pain.....getting pretty worried
Posted 7/3/2016 9:35 PM (GMT -5)
The only person you should believe on the internet is Tall Allen. That dude knows his stuff.

and sorry about that NHS thing. I have relatives in the UK and it can be difficult to get quality care in some areas.

Just shutdown the computer and try counting sheep. I mean real sheep, go to the country and find some sheep to count. ;)

Andrew
Posted 7/3/2016 10:01 PM (GMT -5)
Tony, you said....
"there is a frequent poster who seems very knowledgeable answering someones concerns talking of the vagaries of the PSA test and says that she has known people eith PSA in the 20/30s with no cancer and people with a reading of 3 with metastases."

So that proves Halberts point. The PSA is not a cancer test. And it also again begs the question.... Why drive yourself nuts at this point?
I know. It's hard. I did the same thing. Twice. The first time negative biopsy and I was crazed for two weeks leading up to the biopsy and the result, then two years later when I had a positive biopsy. And as of today, I'm fine. But guess what I've lost - all those days wasted with worrying. And they are precious days that I'll never get back.
Very hard. We know. But try to chill a bit until you have something concrete to worry about. As of now you don't. Try the mindfullness that tall Allen suggested.
Good luck, no matter what happens, in the end you'll be fine. And for now, you are safe
Posted 7/4/2016 12:43 AM (GMT -5)
Andrew & Pratoman, thank you for replying....I KNOW that I SHOULD stop worrying but am finding it impossible....I have now convinced myself that I have advanced PCa, and, like the tales of people who have been "Cursed" by a Witch Doctor and who, because they believe in the curse, succumb to it.....without wishing to repeat myself ad-nauseum It's the back pain that's got me convinced....Believe me guys, no one more than me wants to be wrong on this.....I haven't had a joyous moment since the PSA test results (apart from a brief respite when the doc had me tested for a UTI ...negative)...I've always been a very happy go lucky guy, always enjoyed "Black" humour too.....nothing seems funny or joyous any more...I won't carry on because I don't want to bring everybody else down.....I tip my hat to you guys who live with this disease every day.....I just know that I'm not strong enough to do it
Best wishes to everybody here who has answered my questions and done their best to help.

Tony
Posted 7/4/2016 1:36 AM (GMT -5)
Hi Tony,
My husband always tells me that most of the things a person worries about never happen. I've found that to be true. I do wish I had worried about him having advanced PCa with mets!
My mother in law always asks herself what is the most probable outcome. The probability of you having mets causing your pain is pretty much nil.
My husband had increased back pain and then numbness in his toes. His GP kept blowing him off because he also herniated discs. He also forgot that a DRE three years earlier was abnormal. In other words, my husband had aggressive PCa for three years before it manifested itself as back pain. His PSA when finally tested was almost 2000.
Here's a thought: How many men with a PSA under 8 have mets that cause sciatica? Don't know for sure, but very very rare.
How many men your age have sciatica from something other than PCa mets? Answer :Boat loads smilewinkgrin
Mine is hurting as I type.
Are you able to get to a good chiropractor? Have you tried a sleep aid that doesn't involve taking an anti depressant?
Zquil is non alcoholic and non habit forming. I use it when I have insomnia. Chiropractor will also give you stretches to relieve the pain. At least if that goes away, the anxiety of waiting for bx and other test results will be lessened.
One thing I also try to do with my DH s cancer is stay away from Google search other than this forum. The guys here know what they're talking about, so no need to distress yourself with horror stories.
Good luck Tony. Hope you are successful in diversion therapy!
Beth
Posted 7/4/2016 2:11 AM (GMT -5)
Beth Thank you for your post, If I was a casual observer watching somebody else getting themselves into a whirl over this, I would say "have a word with yourself and pull yourself together" but as it's happening to me I find it impossible to do it.....at the grand old age of 58 I have had bad back and sciatica, but the fact that these came on before the PSA test and have remained and not gone away....It's got me mightily worried (In case you hadn't noticed) shakehead
I'm sorry to read of your husbands story. The fact that he had advanced PCa when he had the back problems ....see where I'm going there?
Everything I read tells me that advanced PCa rarely shows up in low PSA readings, but the fact that it does, even if it is as rare as hen's teeth is enough to send me into a flap......................Stupid? Undoubtedly..... Irrational? absolutely......but I have been tested and found wanting...
I have to wait another week before a cystoscopy, which from what I gather will only show how enlarged my prostate is.....then I suppose it will be more tests and more waiting , by which time I will be a "Basket Case".
I will look up an Osteopath/Chiropractor and present myself and hope they find that this problem is muscle/age related more than anything sinister......
Never taken a tranquiliser or a sleeping pill in my life before this....But things change....I am definitely staying away from google from now on....I wont even go trawling the forums, because even they throw up horror stories....I'll keep an eye on my threads here and on a UK community that I have joined and reply to posts because I find it calming to "talk" to all you well meaning folks here, who take the time to talk
Thanks again for taking the time to write.....and hope everything works out for you and your husband

Tony
Posted 7/4/2016 7:41 AM (GMT -5)
I've been quietly following this thread for the last several days and have come to the conclusion that, in spite of the fact that you're being given ample reassurance by a host of prostate cancer veterans, the dialogue is only feeding your anxiety and your worry.

When I was diagnosed, I lost 20 pounds in a month...not from the cancer, but simply because I was so anxious that I had no appetite. I was convinced it was the wasting disease, signaling approaching death. Logic doesn't always overcome emotional anxiety, and your case seem a clear demonstration of that fact.

In short, no one can help you but you. I'm not even sure any medical procedure will reassure you that your "pins and needles" aren't from metastatic prostate cancer.

What finally calmed me down was a realization that there was nothing special about my case. People all around the world are suffering from all sorts of diseases. Many are cured and some are not, and all I could do was to pray for acceptance of whatever might come my way. Suffering is part of the human condition. Fortunately, we in the developed countries of the world often have resources that cure our diseases or at least relieve our pain. Most people on this earth aren't so lucky.

My opinion is that you're gonna be just fine, but you need to stop wallowing in this mire of anxiety and accept the fact that there's a tiny chance you might need to gird your loins for a battle against cancer, just as millions of human beings, from innocent children to the very aged, do every day. Find your core of strength and work from there. Best of luck to you.
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