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Help for a worried Newbie

Hi, Posted in another Prostate Cancer forum so apologies to people who go there too....just skip straight over.....

A little about myself, Live in the UK and am 58 years of age no other health probs (as far as I know)

10 years ago when I was 48 went to the doctors because of frequent urination needing to find a toilet when I was out more often than usual etc. Doc did a DRE which she thought was normal and had the blood taken by the nurse.....May have been blood first then DRE cannot remember. Phoned for results and told results fine nothing to worry about (I have now found out that the PSA was 1.2.) Fast forward 8 years to 2014 when I go to the doctors again with similar problem as I was getting up maybe twice a night to go to the toilet. This time DRE (nothing unusual found) and a blood test the following day. Doc called me in a couple of days later and said that my PSA was 3.3 and because here in Britain the cut-off for my age group was 3 she recommended a trip to the hospital. I freaked a bit and said could I think a bit as I was only just over the line.....Went home and did some research and found that DRE first before the blood etc. etc. plus I had ridden my bike the day before. Went back to Doc to explain she agreed to another PSA, this time 3.1. She saw my reticence about going to the hospital (maybe big mistake) and agreed that it was possible that I had a higher than usual baseline, so we would do a PSA test every 6 months.
Two subsequent tests both stayed at 3.1 and I think (know) I got a bit complacent and waited 14 months before going back, and then because I was having a bit of lower back pain. Then last week 1 day before the arranged PSA test I woke up very early with a very painful lower abdomen pain which proceeded through the day to refer itself to the testicles (felt as though I'd just been kicked in the balls)....this lasted all day but was better the following day. Following day had the Blood test (No DRE) and walked out whistling. Got home Friday evening to an answerphone message to ring the doctors surgery. It was at this point that I started to get a bit panicky as the onus is nearly always on the patient to phone the surgery not vice versa, plus the test was only the previous day, so I had visions of alarm bells and klaxons going off at the lab. (never a good idea to be a pessimist). So I spent a terrible weekend (Docs closed all weekend) Plenty of Internet research (probably not a good idea...) fighting all kinds of imaginary monsters. Rang Monday and got a late afternoon appointment, Was pretty much expecting the worst when I walked in. Doctor said that my PSA had gone up to 7.5 (I was a tad relieved as I was imagining double or even treble figures). He did a DRE and said that the prostate felt slightly enlarged but felt "normal" arranged a urine test and some more blood for Kidney function etc. I walked out of there feeling a great weight had been lifted as I know that a UTI which I have the symptons of (Groin, lower abdomen and lower back pain) was also in the Docs mind......Fast forward a couple of days, results in, I don't have a UTI so I now have to hope for Prostatitis....or the rise in PSA I guess will be due to PCa. I have now noticed some tingling in my left leg and foot so am I now looking at advanced PCa? I know it could be prostatitis but I'm really worrying now....Have been referred to Urology clinic (within next 2 weeks) I know I'm jumping the gun and I do apologise up front for being a bit of a neurotic "cry-baby" (especially when I read about what some of you guys have gone through) but I just would like some advice....Do you think that a PSA reading of 7.5 could be advanced stage/Metastasised? I know you guys don't have a crystal ball but from what I read you do seem to possess a lot of hard won knowledge.....Many thanks in advance and sorry for the long winded post...

Tony

Re: Help for a worried Newbie

Tony, Not a lot of use to advise an obvious worrier not to do so, but you really should not over-react. As you are aware, elevated PSA can be caused in several ways. One is certainly PCa and with a disease for which there are no rules, it will remain possible. A DRE will give greater certainty. A biopsy which most find easy, but some find painful, is not without risk but would enable any PCa to be graded. A biopsy can miss PCa which is in an area untouched by the needles but there are clever technologies available to link scanning with the biopsy to get greater accuracy. In the NHS, not all hospitals have access to the best technology so you may need to exercise some choice to get what you may need to put your mind at rest.

With you PSA level you may not have PCa at all, but if you do, very likely it will be at a level which causes you few problems. Get the tests done and then you can plan from a base of knowledge rather than guesswork.

AC in Northants, England

Re: Help for a worried Newbie

Auld Codger,
Many thanks for replying to my rambling post....I had never thought of myself as a panicky kind of person....always a little bit condescending of people who "flapped"....Now realise that when push comes to shove and given the right set of circumstances etc. etc. I have done so much research on PCa since the weekend I could probably give a 10 year urology registrar a run for his money:-)
I was really cheerleading for the Urinary or Kidney infection but had my hopes dashed yesterday when the doc said my blood and urine were OK. Trouble is too much knowledge is a dangerous thing.....I know that a relatively low PSA such as mine wouldn't
normally point to anything really sinister but then I start to overthink and realise that when it comes to PCa there are no hard and fast rules. The doc did give me a DRE and said it felt slightly enlarged but couldn't feel any real abnormalities, but I know that DRE isn't an exact science either, especially from a GP who doesn't get to do that many. Whats really freaking me more than anything isn't the 7.5 PSA but the Velocity from 3.1 to 7.5 in 14 months (was supposed to go every 6 months but got complacent after several 3.1 readings...that'll teach me) That and the back pain and the Pins and needles in my leg (see where worrying gets you) :-)
I live in Kent so my urology appointment when it happens will be Maidstone or Tonbridge Hospital...I'll try and do some research on their facilities
After a bit of a "moment" I have today spoken to one of the brilliant nurses from the Prostate Cancer UK site, she was absolutely fantastic and did her best to put me at my ease....basically said what you said re 7.5 being less likely to be the "Bad" one....
Many thanks again for taking the time to reply to my post to ease the stress....Very kind of you....Best wishes and Best wishes
Tony

Re: Help for a worried Newbie

Tony,
The initial advice from Auld Codger is sound. Hopefully in the next few weeks the Urology Clinic will clarify your position.

Best wishes.

Lyn

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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