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User

Posted 01 Jul 2015 at 21:00

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 02 Aug 2015 at 00:03

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 22:29

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 23:10

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 23:43

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 04:19

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 11:37

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 11:39 | Reason: Not specified

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

User

Posted 05 Jul 2015 at 20:02

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 21:02

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 21:06 | Reason: Not specified

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

User

Posted 08 Jul 2015 at 21:10

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 09 Jul 2015 at 00:31

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 14:01

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 18:14

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 23:21

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 15:34

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 15:34 | Reason: Not specified

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

User

Posted 18 Jul 2015 at 17:19

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 16:01

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 16:05

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 16:58

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 17:01 | 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 13:55

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 12:36

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 09:08

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 23:20

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 22:29

Peter

Nil desperandum

Allister

User

Posted 01 Jul 2015 at 23:10

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 23:43

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 04:19

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 11:37

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 11:39 | Reason: Not specified

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

User

Posted 02 Jul 2015 at 15:34

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 20:02

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 22:52

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 19:00

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 19:29

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 19:29 | Reason: Not specified

User

Posted 07 Jul 2015 at 19:52

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 23:15

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 23:21

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 08:04

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 08:12

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 11:07

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 11:39

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 13:07

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

User

Posted 08 Jul 2015 at 18:24

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

User

Posted 08 Jul 2015 at 19:15

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

Edited by member 08 Jul 2015 at 19:19 | Reason: Not specified

User

Posted 08 Jul 2015 at 20:37

Not liking this post either . Gleason 4+4 , T3 , PSA 43 ( doubled in 6 months ) etc . And talk of micro mets at last meeting . This has been interesting though . Finally took the time to understand Gleason today . I'll chill till end July and go from there

User

Posted 08 Jul 2015 at 21:02

Originally Posted by: Online Community Member

Edited by member 08 Jul 2015 at 21:06 | Reason: Not specified

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

User

Posted 08 Jul 2015 at 21:05

Originally Posted by: Online Community Member

Relax Chris - I have only said something in a different way to what you were told after the MDT meeting - your stats made you too risky for brachy. Concentrate on getting back to good health :-)

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

User

Posted 08 Jul 2015 at 21:10

Originally Posted by: Online Community Member

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

User

Posted 09 Jul 2015 at 00:31

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 14:01

Quote:

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 18:14

Statistics :-)

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

User

Posted 09 Jul 2015 at 22:05

Edited by member 09 Jul 2015 at 22:08 | Reason: Not specified

User

Posted 09 Jul 2015 at 22:47

Thanks once again for all the information and the good wishes included in your messages.

I have finally got an appointment with a specialist after my GP managing to lose the referral form. My appointment is on Tuesday 14th July, which is two weeks and one day after my initial visit to the GP. So I think that will count as a missed target!

I will let you know the outcome after Tuesday.

User

Posted 09 Jul 2015 at 23:21

Originally Posted by: Online Community Member

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

User

Posted 18 Jul 2015 at 14:24

Hi everyone,

I did try to post a couple of days ago, but for some reason it doesn't seem to have posted. But then the last few days have been a bit traumatic so I may have done something wrong.

I went to my assessment clinic on Tuesday and was immediately transferred by ambulance to the local A&E department. The clinician was deeply concerned that the pains in my legs were due to spinal compression. I was admitted to the hospital and ordered to remain in bed for two days. In the meantime, they organised an MRI scan to check my spine.

Luckily, there was no sign of spinal compression, but they did find that I had a number of metastasized growths on my spine. I subsequently had a complete bone scan and it seems I have growths in every bone in my body.

They started hormone treatment immediately and they are confident that that will reduce all of the tumours.

I have not yet had a biopsy, because I use warfarin for a heart condition and they didn't want to disrupt that at this moment, so I have no idea what Gleason score I may have. They are planning to do a biopsy at some point in the future.

In the meantime, I have been discharged from hospital and I am waiting to see what the side effects of the HT are like. Not looking forward to that!

Overall, the consultants are quite optimistic about my chances, talking in terms of years rather than months, so I am trying to remain philosophical. I have been assigned a MacMillan nurse, so I have a point of contact for any worries I may have.

I will let you know how things develop, but once again, thanks to each of you who have given me support and guidance.

Peter

User

Posted 18 Jul 2015 at 15:34

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 15:34 | Reason: Not specified

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

User

Posted 18 Jul 2015 at 17:19

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 15:40

Hi All,

Well I have the biopsy now, but I won't have the results until I see the oncologist, which is expected to be at the end of next week. So I am no further on in terms of knowing my Gleason score yet.

My specialist nurse did describe my condition as terminal, but told me not to worry about that, with treatment, I could last for years. Only time will tell I suppose.

I feel as if the HT is beginning to work at last. I managed a good night's sleep last night for the first time in months, only needing to visit the toilet 3 times all night. That is a huge improvement on previous nights. I haven't noticed any side effects so far, apart from getting tired out very easily. But I am trying to plan ahead to make the most of the day before I do get tired out.

All in all, I am feeling ok. I certainly don't feel ill in any way. So I guess the way forward is one day at a time.

Peter

User

Posted 30 Jul 2015 at 16:01

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 16:05

Hi Peter,

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 31 Jul 2015 at 16:58

Hi Peter

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

Take care

Kev

Edited by member 31 Jul 2015 at 17:01 | 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 13:55

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

User

Posted 01 Aug 2015 at 20:49

Thanks Julie, Kev, Marje and Sandra.

I don't want to do my nurse an injustice. She did use the word in a very qualified way and I did understand what she meant. She did also use the word incurable.

With all the reading I have been doing, together with, especially, the kind comments and advice on this forum, I think I have got a good measure of where I am and what the future potentially holds.

I don't feel in any way ill at the moment and I am carrying on with life in much the same way I did before. The only issue I have is that I do get unbelievably tired by around 5pm each day. I think this is a side effect of the hormone treatment rather than the cancer itself. I am trying to plan ahead with what I do so that by that time I can turn into relax mode.

Thanks to each of you for your kind words and advice.

Peter

User

Posted 02 Aug 2015 at 00:03

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.

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 02 Aug 2015 at 12:36

User

Posted 02 Aug 2015 at 20:14

Hi Julie,

Trevor has certainly had a bad time of it over the years, but glad to know he is still doing well.

I too have heart problems, having had a heart attack way back in 1994. That attack left me with a ventricular aneurysm and it was this which caused the delay in my having a biopsy. The biopsy was largely academic anyway, since they could see the tumours throughout my body from the MRI scan. The biopsy was only done so that they can categorise it.

I am just waiting for an appointment to see the oncologist, which I was told would be this coming Friday, but I haven't had confirmation of that yet. I must admit, I am not looking forward to it.

Please give my best wishes to Trevor.

Peter

User

Posted 15 Aug 2015 at 23:19

Well two visits to the oncologist under my belt now and a third visit due next Friday.

He has been a bit vague about my diagnosis, but I have managed to drag out of a few statistics. Apparently I am T4/M1 with spread to bones, local lymph nodes and lungs. As for Gleason score, all he would tell me was that it is 9. I assume that would be 4+5.

He suggested that I join the Stampede Clinical Trial and I have agreed to this. It is subject to acceptance by UCL and I should get confirmation on Friday.

I had my second HT injection on Thursday and I am still very sore from that. Do they get better as time goes on?

I still feel physically fine apart from tiredness towards the end of the day and I am coping very well.

Peter

User

Posted 16 Aug 2015 at 09:08

Good Luck with Friday's decision

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

User

Posted 17 Aug 2015 at 23:20

Peter,

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

User

Posted 19 Aug 2015 at 15:59

Thanks Viv,

The soreness has passed now. It lasted for about two weeks following my first injection, but with this second one, it has only taken a few days, so that is an improvement. I am on Degaralex, which I am told is the Gold Standard of HT and the best one for my condition.

I have at last had some good news for a change. My PSA which was 168 at the end of June has now gone down to 9. Quite a dramatic fall, though still not quite low enough. But it does show that the HT is working and I am delighted with that.

I am kind of hoping that if I am accepted on the Stampede trial that I will be put into the control group. As you say, it does give me a lot more in the way of consultation and monitoring.

Peter

User

Posted 21 Aug 2015 at 22:43

I have been accepted onto the Stampede trial, but I have been allocated to the RT arm (H). Although I have initially agreed to continue with this treatment, I have since discussed it with my family and thought very deeply about it and I have decided that I must withdraw from the trial.

I have a history of bowel inflammation and even my oncologist has said this is risky with RT. Whilst I would really like to take part in medical research, I feel that the treatment is likely to be detrimental to my health, will cause discomfort and a great deal of inconvenience and is unlikely to provide any material benefit.

Peter

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