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User

Posted 01 Jul 2015 at 20:00

A few weeks ago, I started getting severe pains in my upper legs and back which forced me to go my doctor. The doctor decided to order a full range of blood tests to eliminate a myriad of possible causes.

When I went to get the results of the blood tests, on Monday of this week, the doctor told me that my PSA was 168 and that she needed to refer me to a specialist urgently. I am currently waiting for an appointment, in the meantime, my imagination is running wild.

The doctor told me that the normal PSA level is 4, so my result is astronomically high. Does anyone know if a PSA of 168 is unusual, or what it is likely to indicate?

I am reading up as much information as I can, but I do feel I am in a bit of a minefield at the moment. I have not been able to get my head around Gleason Scores, PC types and treatment options. Any help or pointers would be very much appreciated.

User

Posted 01 Aug 2015 at 23:03

Hi peter,

I have been off line for a while so have only just seen your prognosis post. I'm sorry to hear the news isn't better, and glad to hear it's not worse.

My OH was lucky- his was caught earlyish. My father also has PCa- his was discovered after local spread. They told him it was incurable, but that HT would hopefully enable him to have many years trouble-free. This treatment was not a cure but was measured as 'freedom from failure'. Failure would be a doubling of the PSA within a set time limit. In any event, his was diagnosed at 61 in 2001. He's now 75 and well. He's been on and off HT, but is living a very normal life.

At the end of the day, cancer or not, we're all terminal. It's just a matter of length of time.

Louise x

User

Posted 01 Jul 2015 at 21:29

Peter

My PSA was similar when I was diagnosed in 2008 (see my profile). It's currently bobbing in and around 2000 so it can go much higher (I've seen 60,0000 +). PSA is only part of the story and until you know the results of the biopsy, the Gleason and MRI staging then it's difficult to call. I've know men with much higher PSA not have spread and men with much smaller PSA having full metastatic disease (like me). This is a very complex disease that varies tremendously. Since I was diagnosed there have been many new developments in drug therapy, some of which I have benefited from. You may have spread or you may be lucky. At this point it is difficult to predict but bear in mind that I am still here! http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

Nil desperandum

Allister

User

Posted 01 Jul 2015 at 22:10

Hi Peter,

As you will have gathered from Allister's post, your PSA is high, particularly for an initial one but not an astronomical. PSA is only one tool for judging PCa and not a great one. Sometimes a GP will give a DRE (Digital Rear Examination) so feel whether the Prostate feels normal. The Gleason score is a grading of how aggressive and further from normal cancer cells are. It is made up of two numbers which are added together, the greatest portion of cancer cells being shown first and less extensive area of cancer cells shown second. This is established with a biopsy. Staging is very important and is given a 'T' number and sometimes another letter to denote whether the PCa is confined to the Prostate, is locally advanced or advanced. As well as biopsy an MRI helps determine staging. Usually a bone scan is given although not always where PSA is very high. Ask for the full diagnosis which normally provides additional information after all the tests are done. Until this diagnosis is given neither you nor we know where you are. It does seem likely that you have PCa but it is a very unpredictable disease.

Do let us know your diagnosis when this is provided. As Allister said, there are a growing number of treatments for PCa and survival rates continue to improve.

Barry

User

Posted 01 Jul 2015 at 22:43

Hi your PSA could be related to conditions that are not cancer.
Did the GP carry out an examination ie a Digital Rectal Examination to see how things felt?

The urologisr without a doubt will carry out this examination and will decide what further tests are required.

This is a very worrying time but it will get easier once you know what the results are.

Ask any questions

Bri

User

Posted 02 Jul 2015 at 03:19

hi peter

you have certainly come to the right place to ask questions, their is a wealth of knowledge on here, but have others have said its all know about waiting, it can be horrendous this waiting, your feelings and thoughts will be all over the place, but keep posting and these guys and dolls will help you, trust me on that one

as is often said click on peoples avatars that will tell you a lot

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 02 Jul 2015 at 10:37

Hello Peter and welcome from me too.

I don't think anyone yet has advised you to obtain this site "Toolkit" a set of publications which explain a lot of things about PC and which may help you. You will find them under "publications".

There are also specialist nurses on this site who may be able to answer questions but you would need to have an idea of questions to ask.

This is still very early days for you. Yes as the other have said your PSA is high but that can be the effect of a number of other things, and they can only be ruled out by further examinations by the experts.
Your raised PSA may well be something like Benign Prostatic Hyperplasia, even infection so don't jump the gun and think the worst.

So, you have been referred on by your GP. Get hold of the Toolkit, get a pad and pen, and write down any questions that are relevant to you for when you see a consultant.
Having said that, it is still early to be looking for answers since you don't have a definitive diagnosis.

Even if the diagnosis is not what you want to hear, as the others have said, treatment has progressed enormously for PC so there is no need for despair.

The fear of the disease and the not knowing are sometimes the worst thing about it all. You can't deal with it until you know what you have to deal with.

When you get to see the consultant it's a good idea to have not only the pen and paper but also somebody who can act a as a second pair of ears. The consultation alone will make you anxious and you may not take in all that is said.
Don't worry about taking a list of questions or writing down answers, it is perfectly normal behaviour and acceptable by doctors.

One thing I would advise against is trawling the web looking for answers to vague questions you have about what MIGHT be wrong with you.
You'll end up overwhelmed with un-neccessary and probably frightening information that may well not be relevant to you at all.

There are many men on here who have PC at various stages and many varieties of treatment so eventually there will be somebody who can answer queries.
Don't be afraid to ask any questions, even personal ones. Somebody will answer I guarantee.

We are all in this together, husbands, wives, partners.

All the best for now, try not to worry too much.
Sandra

edited for spelling

Edited by member 02 Jul 2015 at 10:39 | Reason: Not specified

We can't control the winds - but we can adjust our sails

User

Posted 05 Jul 2015 at 19:02

Hi peter

The Gleason score sounds much more complicated than it is. It's a score of how aggressive your cancer is (if you have one). It is made up of two scores out of five which are added together, and is obtained from biopsy cores

The first score is obtained by looking at all the cells and finding the most aggressive cancer cells, five being the most aggressive.

The second score is obtained by looking at all the cells to find out which level of aggressive cells are in the majority. So, if most of the cells are a level 4, the second part of the Gleason is 4.

The whole score is out of ten, with ten being the worst score to have. it's usually quoted in two halves with the most aggressive score first. A 3+4 is therefore different to a 4 +3.

Hope this helps. Good luck

Louise

User

Posted 08 Jul 2015 at 20:02

Originally Posted by: Online Community Member

I like your wording better Bri - I quoted from PCUK leaflet but perhaps that's the issue - different words used in different contexts by different people but aggressiveness, risk and distortion all mean the same thing in the end, perhaps?

Possibly Lyn...to be honest I'm not sure what the high risk relates to ie recurrance, chance of micro mets, death from PCA. .Having reviewed my own suggestions i don't think I actually want to know

I do know it helps the medics to determine the most appropriate treatment pathways

Bri

I think you have answered your own question Bri. In some of the journals, 'high risk at diagnosis' relates to the likelihood or not of primary treatment doing the job. Like you, John was considered high risk because of the suspect node (although that later turned out to be a red herring) and both you and John needed adjuvant / salvage RT so the prediction was correct. Hopefully, for both of you, the additional treatment did the trick and you are now 'no risk' or at least 'very very low risk' :-)

Edited by member 08 Jul 2015 at 20:06 | Reason: Not specified

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

User

Posted 08 Jul 2015 at 20:10

Originally Posted by: Online Community Member

Hi Lyn & Bri,

My official diagnosis is also "High Risk". I've always thought it was because my Gleason score of 7 (4+3) was borderline and was pretty close to being declared an 8.

I was also told that even if my treatment was successful this time, there was strong possibility that it would return in the future.

Steve

G7 is moderate risk so you wouldn't be considered a high risk just because 7 is nearly 8. In your case, meeting 2 of the criteria (PSA over 20, T3) was probably the reason. As I said in Bri's reply, 'high risk' is often 'high risk of recurrence' but that doesn't mean it definitely will come back - otherwise they wouldn't have bothered offering you curative treatment. Keep believing!

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

User

Posted 08 Jul 2015 at 23:31

Originally Posted by: Online Community Member

Hi Lyn & Bri,

My official diagnosis is also "High Risk". I've always thought it was because my Gleason score of 7 (4+3) was borderline and was pretty close to being declared an 8.

I was also told that even if my treatment was successful this time, there was strong possibility that it would return in the future.

Steve

Correct :)

Bri

User

Posted 09 Jul 2015 at 13:01

Quote:

I'll concur with that. Mine is stratified as intermediate risk (G 4+3) but with high risk features ( perineural invasion and surgical margin) of biochemical recurrence. Risk can also pertain to cancer-specific mortality and survival.

Incidentally, there are algorithms out there, if you care to look, which some clinicians and, indeed, patients can use to assist in deciding treatment with best outcomes, predict the likelihood of undetectable PSA 10yrs following surgery, etc.

I treat them just as statistics simply because our clinical and personal circumstances are so variable and different as has been pointed out many times on this blog.

Regards,

Jacey

User

Posted 09 Jul 2015 at 17:14

The most common tool is the Sloane-Kettering one, used by a lot of UK hospitals, but anyone looking to use it themselves needs to be aware that it is based on US data and the outcomes in the UK tend to be worse because men are diagnosed later here. Ideally, you also need to know something about the stats in your own area; for example, although St James's uses the SK tool, they then do a local adjustment because the Leeds demographic means that a 50 year old man with G7 T2 will do not as well as if he was in Newcastle and considerably worse than if he was in New York.

Statistics :-)

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

User

Posted 09 Jul 2015 at 22:21

Originally Posted by: Online Community Member

Just to add to the confusion I was diagnosed with a psa of 6.2 a gleason of 3+4=7 and after my Robotic op.was told that I had a better than 85% chance of NOT dying of prostate cancer, which I was quite pleased to accept. How strange is that? Best Wishes to you Peter, and welcome to our club. Diesel.

John was diagnosed with a PSA of 3.1 and G7 (3+4) but the SK nomogram predicted a 55% chance that it had already spread. We assumed it was a typo and they meant 5% but they didn't. As it turned out, they were right.

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

User

Posted 18 Jul 2015 at 14:34

Wow Peter, that must have been scary for you.

Good there is no spinal compression, not so good the growths on the spine.

Years rather than months eh? that's very good since as many on here will tell you new drugs, combination of drugs and therapies etc are coming along all the time.

I'm glad you have a MacMillan nurse for reassurance.

Good luck and best wishes to you

Edited by member 18 Jul 2015 at 14:34 | Reason: Not specified

We can't control the winds - but we can adjust our sails

User

Posted 18 Jul 2015 at 16:19

Hi Peter sounds like you did have a scarey time but so glad it wasn't spinal compression.

Theres every chance it's going to be managed for years and then there are other treatments.

May help to look at Si's profile (SiNess)...or equally Allisters (Alathay's)

All the best

Bri

User

Posted 30 Jul 2015 at 15:01

Glad that biopsy is out of the way Peter.

You may be terminal but as the nurse said that could be a long way in the future. There are others on here in the same boat and I expect they'll be along with words of wisdom.

Start making your memories. Enjoy what is important to you and the family.

Best wishes to you.

Sandra

We can't control the winds - but we can adjust our sails

User

Posted 31 Jul 2015 at 15:05

Hi Peter,

A belated welcome from me, I see you have had a pretty poop time of things it takes a while for it all to sink in we are just over 2 years since diagnosis with a very similar prognosis to you (if you click on individual avatars you can read peoples bios) . If you are going to read Trevor's get your self a cuppa or bottle of wine as I do tend to ramble on a bit.

Trevor is one of the few men who didn't have a biopsy so it's not always essential . So it's official you are a member of the Mets club the only advice that I can offer is actually what you have already said and that is to take one day at a time, this is our Mantra . If you have any questions or just need support ask away.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 31 Jul 2015 at 15:58

Hi Peter

I am sorry that you are here with us but additionally sorry that the nurse chose to use the word "terminal".

What she should have said is that you like me are uncurable however that is not to say that with the range of drugs and treatments around you (and I!!) won't be here for many years and with further advancement in treatments a few more after that.

The word terminal should I believe only be used when the cancer has got a hold and no drugs or treatments are left to slow the progression, at that stage it would appear that there should be another year or so too so please don't think of yourself as terminal right now.

That said, I am sure like me you have changed your view on many things in life already and living for the day is more of a feature than planning for the future however I have discovered that there is so much pleasure to be had by just being alive and out there. I hope that you feel strong about yourself and manage to enjoy most days.

Take care

Kev

Edited by member 31 Jul 2015 at 16:01 | Reason: Not specified

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 01 Aug 2015 at 12:55

I agree with Kev, the use of the word "terminal" is not appropriate. Tony has a similar cancer and prognosis to yours, Peter, and we asked whether it was "terminal" (for travel insurance purposes). Both the nurse and the oncologist said, no, not yet. "Terminal" is end-stage, when treatment options have run out. A cancer that's incurable but is still being treated to prolong life isn't terminal.

I know it's just words, but it helps to think in the most positive terms we can.
Good luck,
Marje

User

Posted 02 Aug 2015 at 11:36

Hi Louise its great to read stories like that of your Dad, it must give hope to a lot of people on here, me included. Take heart Peter K you're not done for yet, not by a long way. Best wishes Diesel.

User

Posted 16 Aug 2015 at 08:08

Hello again Peter.
Glad to hear you are coping with the tiredness. At least it is at the end of the day when most of us will will slowing down anyway and looking forward to a relaxing evening. It gives the feeling of normality somehow doesn't it.

Good Luck with Friday's decision

We can't control the winds - but we can adjust our sails

User

Posted 17 Aug 2015 at 22:20

Peter,

I've had 9 or so HT injections and have experienced a bit of bruising once or twice, but never soreness. I'm on Prostap and my injections are given around the belly button. The nurse notes the site of each injection and takes care not to inject consecutively in the same place. It would be worth mentioning the soreness at your next consultation. Your consultant could change your prescription to a different product.

I've been on Stampede for 2 years - control group - and it's definitely worthwhile for the extra consultations and monitoring.

Hope all goes well on Friday.

Viv

Show Most Thanked Posts

User

Posted 01 Jul 2015 at 21:29

Peter

Nil desperandum

Allister

User

Posted 01 Jul 2015 at 22:10

Hi Peter,

Do let us know your diagnosis when this is provided. As Allister said, there are a growing number of treatments for PCa and survival rates continue to improve.

Barry

User

Posted 01 Jul 2015 at 22:43

Hi your PSA could be related to conditions that are not cancer.
Did the GP carry out an examination ie a Digital Rectal Examination to see how things felt?

The urologisr without a doubt will carry out this examination and will decide what further tests are required.

This is a very worrying time but it will get easier once you know what the results are.

Ask any questions

Bri

User

Posted 02 Jul 2015 at 03:19

hi peter

as is often said click on peoples avatars that will tell you a lot

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 02 Jul 2015 at 10:37

Hello Peter and welcome from me too.

I don't think anyone yet has advised you to obtain this site "Toolkit" a set of publications which explain a lot of things about PC and which may help you. You will find them under "publications".

There are also specialist nurses on this site who may be able to answer questions but you would need to have an idea of questions to ask.

Even if the diagnosis is not what you want to hear, as the others have said, treatment has progressed enormously for PC so there is no need for despair.

The fear of the disease and the not knowing are sometimes the worst thing about it all. You can't deal with it until you know what you have to deal with.

We are all in this together, husbands, wives, partners.

All the best for now, try not to worry too much.
Sandra

edited for spelling

Edited by member 02 Jul 2015 at 10:39 | Reason: Not specified

We can't control the winds - but we can adjust our sails

User

Posted 02 Jul 2015 at 14:34

Thanks to each of you for your reassurances and comments. They have all been very helpful and I will take them all on board.

I did have a DRE whilst at the doctors and she said that she felt some irregularity. I do have quite severe nocturia but not really any other symptoms, at least not until I started getting the pains in my legs.

I think the best advice you have given me is to not get carried away and to await the results of further tests and a full diagnosis. Then I will know what I am dealing with.

Thanks once again

Peter

User

Posted 05 Jul 2015 at 19:02

Hi peter

The first score is obtained by looking at all the cells and finding the most aggressive cancer cells, five being the most aggressive.

The second score is obtained by looking at all the cells to find out which level of aggressive cells are in the majority. So, if most of the cells are a level 4, the second part of the Gleason is 4.

The whole score is out of ten, with ten being the worst score to have. it's usually quoted in two halves with the most aggressive score first. A 3+4 is therefore different to a 4 +3.

Hope this helps. Good luck

Louise

User

Posted 05 Jul 2015 at 21:52

Nearly but not quite correct Louise - they look at how distorted the cells are (which is not the same as aggressiveness). The first number describes the most prevalent distortion (the majority of distorted cells) and the second number describes the next most prevalent distortion. Hence a result of G7 (4+3) is higher risk than a (3+4) because more cells are more distorted.

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

User

Posted 06 Jul 2015 at 18:00

Hi Peter

I like you had a high Psa when diagnosed in Jan 2015.
Mine was 199 initially and then rose to 235. Gleason was 7.

I'm on HT plus 2 new drugs since January and my psa is burbling along at 0.07.

I can't make real sense of the levels it seems that aggressiveness of the Pca is the thing and where it's spread to that determines the treatment so once you have all the results of the tests you know what you have.

Mine has spread out of the prostate to left hip so at the moment they won't give RT or operate.

Hope this helps and let us know your results. We've all been there and can certainly understand your feelings.

User

Posted 06 Jul 2015 at 18:29

I had this explained to me a while ago , and I still don't understand it . My PSA was high ( which people said was irrelevant basically ) but went from 4,4, ,6,6 15,18,23,27,34,43. Not drastic but rate of change is important more importantly . Ive been told im Gleason 7 . One minute 3+4 , then 4+3 , and then eventually Gleason 8 (4+4) prior to my RP two weeks ago . Im waiting on the post -op results end July . Im sorry your cancer has spread to your hip . My bone scan says I might have rib spread . But one thing at a time . Its very difficult isn't it . And although you have your wife , friend etc with you it all gets explained so quickly that you smile knowingly at the time then walk away thinking what the Fu...k . People on here will always have support if you need it and want it
Chris

Edited by member 06 Jul 2015 at 18:29 | Reason: Not specified

If life gives you lemons , then make lemonade

User

Posted 07 Jul 2015 at 18:52

Originally Posted by: Online Community Member

Thanks for that Lyn. I copied my post from some notes which were given to me when my dad was diagnosed in 2001. Maybe it was dumbed down and distortion was replaced with aggressive for joe public. But I'm sure they told me the first score was the highest aggressive/distorted ness score, and the second was the score of the majority of cells? Or have I misread your post?

When OH had his post op chat with the surgeon, he told him that his Gleason had been upgraded from a 4 + 3 to a 5 + 4. He said we shouldn't worry about this - while there were some level 5 cells, most of them were level 4.

User

Posted 07 Jul 2015 at 22:15

I think the specialist was confused :-( The first score is the most prevalent and the second is the highest grade of what else was there. If it was as your specialist said, then we would never see anyone with a 3+4 or 4+5 as the biggest number would always be first.

This might make it clearer http://prostatecanceruk.org/prostate-information/getting-diagnosed/gleason-grade-and-gleason-score

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

User

Posted 07 Jul 2015 at 22:21

On diagnosis, aggressive PCa is either a Gleason 8 or above OR a staging of T3 or above OR a PSA of more than 20 OR a doubling time of less than 12 months. A combination of these is more concerning than one thing on its own.

Aggressiveness is defined differently for men who have a recurrence after treatment.

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

User

Posted 08 Jul 2015 at 07:04

Originally Posted by: Online Community Member

This might make it clearer http://prostatecanceruk.org/prostate-information/getting-diagnosed/gleason-grade-and-gleason-score

Think it's more likely that I'm the one who's confused!

User

Posted 08 Jul 2015 at 07:12

Throwing another comment in the pot, my hubby was also given a tertiary pattern along with the Gleason score which is also of some importance. I am sure lyn also knows what that means.

User

Posted 08 Jul 2015 at 10:07

I didn't want to over complicate things! It is rare on here that we see a third G score but if someone is diagnosed with let's say a 3+4 but the pathology found that amongst the rest of the sample there was some 5 going on then they report it ... mainly because those 5 cells could cause much more bother than the majority 3s. In other words, in a biopsy sample they might find:

2 cores out of 6 are cancerous
Of the cancer cells seen, 60% are a 3 so only moderately distorted
20% were a 4 so quite distorted

Of the other 20%, there were a mixture of 1s, 2s and 5s but mostly 2s - the Gleason would be given as G3+4

If on the other hand, the other 20% was a mixture of 1s, 2s and 5s but there were quite a lot of 5s then the Gleason might be reported as G3+4 (tertiary 5).

It matters to treatment choices of course - sometimes we see men diagnosed with a G6 (3+3) and they may get lots of advice about pussycats and lack of aggressiveness and may be pointed towards active surveillance. However, if they had a tertiary 5 that the advisers weren't aware of, active surveillance could be a disaster.

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

User

Posted 08 Jul 2015 at 10:39

Originally Posted by: Online Community Member

Aggressiveness is defined differently for men who have a recurrence after treatment.

I wasn't sure if some of the above were classified as high risk rather than the aggressiveness of the PCA. I am classified as high risk but have never been informed that I had an aggressive strain of PCa

Bri

User

Posted 08 Jul 2015 at 12:07

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

User

Posted 08 Jul 2015 at 17:24

Originally Posted by: Online Community Member

Possibly Lyn...to be honest I'm not sure what the high risk relates to ie recurrance, chance of micro mets, death from PCA. .Having reviewed my own suggestions i don't think I actually want to know

I do know it helps the medics to determine the most appropriate treatment pathways

Bri

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