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High PSA worry.

User
Posted 21 Dec 2017 at 14:37

Hi,


  I went to Dr. only because I thought I was peeing a bit slow....and sometimes walking back to toilet after already having a wee. Very mild symptoms really. I had a blood test. When Dr called ,I was shocked to be told that PSA was 300!! I have no weight loss/ no bleeding ...or anything else...I feel completely fit and normal. I have convinced myself that I have spread throughout my body! Going for full assessment next week...ultra sound / biopsies. Is there any chance that I just have benign hypertrophy with such a high psa?


 If I do have growth outside the prostate, have I any chance of surviving for any length of time. My kids are coming home for Christmas and I'll need to tell them ...could be a nightmare...please offer me some hope.  Many thanks for reading.

User
Posted 21 Dec 2017 at 15:33

Hello ipri and welcome to the site

PSA of 300 is high but nowhere near the highest we have had on here, well up in the thousands.

Did the doctor do a DRE (Digital rectal examination) and if so, did he say what he found.?

It's possible that high PSA goes with benign prostatic hyperplasia which can cause a high PSA as can an infection. IF your doctor did the DRE and said it was irregular or hard or lumpy then it is indicative and would need investigating (which is being done so you are a step ahead.

Please try not to worry (easier said than done I know) .

When you've been feeling fit and well and have little or no symptoms then the shock of diagnosis is enormous and takes a bit of getting used to.

You don't mention having actually seen a consultant so who gave you a diagnosis of PC. Was it a GP?

Whatever the outcome you are already on the path to being treated. We have men on here with spread and even for those who are deemed incurable, life goes on, it just follows a different path and becomes a new normal.

If you are given hormones for instance, it will reduce the size of the cancer and reduce the PSA. There are many treatments available and many new ones come in all the time. Or if not new then old ones are tweaked because discoveries on how the treatments work is ongoing.

If you feel the need to tell your children, then just try and be matter of fact about it. Tell them what you have been told perhaps but after you have received some responses from the members on here I'm sure you'll be able to present it in a positive light without putting the fear of God up them.

Hang in there until somebody else comes along. Once the biopsy is done you will be given a Gleason score (assuming you do have cancer) and if you come back with the results then somebody will point you in the direction of relevant information.

There isn't much point in looking t the options now as it may cause un-necessary stress when yo don't actually know yet what you are dealing with.

Try not to Google too much until you get a result. Not all of it is relevant to you

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 21 Dec 2017 at 16:59

Thanks Sandra...when I phoned Dr with my story, he got me to see his nurse for bloods. As soon as he got them, he refered me to a Consultant Urologist, ( seeing him next Thurs). He didn't do a rectal exam, I assume he knew the Consultant would do this, also, if it was further bad news, it would spoil Xmas...even further! So, no, I haven't had diagnosis yet.

The "one stop" unit will do PR ultrasound scan / ? biopsies. I assume if the gland feels ok, they may not do biopsies. I'm ready for the biopsies if needed. I'm told to be there 3-4 hours . I would like to think I'll be around for another Christmas....I just don't know what timescale to go by.

Many thanks for the reply....regards , Ian

User
Posted 21 Dec 2017 at 17:07

Hi,   


It's a worrying time when you first find out and think all kinds of things.  It's like a new world and I found optimism the best calmer. 


The main point of my note is until you know for certain do you need to tell anyone?


I've only told my wife and have lived quite normally, except for 2 days in hospital and having a catheter for a couple of weeks although no-one knew and I was out and about.


That won't happen to everyone,  some treatments are much different and go on for years but might not show signs to others.  If you wanted to,  you could probably not tell anyone.


 


Good luck with your diagnosis.

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User
Posted 21 Dec 2017 at 15:33

Hello ipri and welcome to the site

PSA of 300 is high but nowhere near the highest we have had on here, well up in the thousands.

Did the doctor do a DRE (Digital rectal examination) and if so, did he say what he found.?

It's possible that high PSA goes with benign prostatic hyperplasia which can cause a high PSA as can an infection. IF your doctor did the DRE and said it was irregular or hard or lumpy then it is indicative and would need investigating (which is being done so you are a step ahead.

Please try not to worry (easier said than done I know) .

When you've been feeling fit and well and have little or no symptoms then the shock of diagnosis is enormous and takes a bit of getting used to.

You don't mention having actually seen a consultant so who gave you a diagnosis of PC. Was it a GP?

Whatever the outcome you are already on the path to being treated. We have men on here with spread and even for those who are deemed incurable, life goes on, it just follows a different path and becomes a new normal.

If you are given hormones for instance, it will reduce the size of the cancer and reduce the PSA. There are many treatments available and many new ones come in all the time. Or if not new then old ones are tweaked because discoveries on how the treatments work is ongoing.

If you feel the need to tell your children, then just try and be matter of fact about it. Tell them what you have been told perhaps but after you have received some responses from the members on here I'm sure you'll be able to present it in a positive light without putting the fear of God up them.

Hang in there until somebody else comes along. Once the biopsy is done you will be given a Gleason score (assuming you do have cancer) and if you come back with the results then somebody will point you in the direction of relevant information.

There isn't much point in looking t the options now as it may cause un-necessary stress when yo don't actually know yet what you are dealing with.

Try not to Google too much until you get a result. Not all of it is relevant to you

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 21 Dec 2017 at 16:59

Thanks Sandra...when I phoned Dr with my story, he got me to see his nurse for bloods. As soon as he got them, he refered me to a Consultant Urologist, ( seeing him next Thurs). He didn't do a rectal exam, I assume he knew the Consultant would do this, also, if it was further bad news, it would spoil Xmas...even further! So, no, I haven't had diagnosis yet.

The "one stop" unit will do PR ultrasound scan / ? biopsies. I assume if the gland feels ok, they may not do biopsies. I'm ready for the biopsies if needed. I'm told to be there 3-4 hours . I would like to think I'll be around for another Christmas....I just don't know what timescale to go by.

Many thanks for the reply....regards , Ian

User
Posted 21 Dec 2017 at 17:07

Hi,   


It's a worrying time when you first find out and think all kinds of things.  It's like a new world and I found optimism the best calmer. 


The main point of my note is until you know for certain do you need to tell anyone?


I've only told my wife and have lived quite normally, except for 2 days in hospital and having a catheter for a couple of weeks although no-one knew and I was out and about.


That won't happen to everyone,  some treatments are much different and go on for years but might not show signs to others.  If you wanted to,  you could probably not tell anyone.


 


Good luck with your diagnosis.

User
Posted 21 Dec 2017 at 17:12

Hi I've just read your note posted just before mine.  You'd need to be one of the worst cases and in very bad condition to see no more Christmases.   Is that likely?  I'm saying no more about that as I've no idea about your case.

User
Posted 23 Dec 2017 at 12:42

Thanks for all the help. My assessment is next Thursday . The waiting for the results will be agony. I seem to find something new every day to worry about. Having read about the Gleason score. I don't even think I want to know!


I will keep you informed and hope that this adds to the forum information pool.   thanks Ian

User
Posted 23 Dec 2017 at 13:04

Originally Posted by: Online Community Member


Thanks Sandra...when I phoned Dr with my story, he got me to see his nurse for bloods. As soon as he got them, he refered me to a Consultant Urologist, ( seeing him next Thurs). He didn't do a rectal exam, I assume he knew the Consultant would do this, also, if it was further bad news, it would spoil Xmas...even further! So, no, I haven't had diagnosis yet.


The "one stop" unit will do PR ultrasound scan / ? biopsies. I assume if the gland feels ok, they may not do biopsies. I'm ready for the biopsies if needed. I'm told to be there 3-4 hours . I would like to think I'll be around for another Christmas....I just don't know what timescale to go by.


Many thanks for the reply....regards , Ian



 


Well, let's look on the bright side shall we.


Tell yourself you WILL see another Christmas and many more after that.


 


You don't have a Gleason score yet and even if one is given there is no reason to assume that it will be astronomically high.


You re lucky to have a "one stop" shop.


 


Good luck, Best Wishes and keep positive 

We can't control the winds - but we can adjust our sails
User
Posted 23 Dec 2017 at 18:51

Does a psa of 300 necessarily mean bone spread?  ian


 


PS...and if so, is it treatable to keep me going?

Edited by member 23 Dec 2017 at 18:53  | Reason: Not specified

User
Posted 23 Dec 2017 at 19:00

Hi Ian,
I don’t think anyone will suggest what your PSA means with regard to where there may or may not be spread to. What all of us do know is the shock of knowing you have/may have prostate cancer as we have experienced it ourselves. Try not to panic (I know that’s not easy either) and wait until you have had all your scans etc.
If it’s any help I was diagnosed with metastatic cancer back in summer of 2016 and hope to be around for some time yet.
All the best
Dave

Edited by member 23 Dec 2017 at 19:01  | Reason: Not specified

User
Posted 23 Dec 2017 at 19:09

As for treatable - most certainly. But how and with what really depends on the diagnosis. One thing I have learned on here is that we are all unique- no one has exactly the same as anyone else.

Edited by member 23 Dec 2017 at 19:11  | Reason: Not specified

User
Posted 23 Dec 2017 at 20:03

300 doesn't necessarily mean bone spread but it does suggest that the cancer may not be contained within the prostate gland; it could be in some lymph nodes for example. As to what it means for longevity, one member here was diagnosed with a PSA of 13,000 and lived for 5 years after diagnosis - our urologist says the highest PSA score ever recorded was 160,000. On the other hand, my husband's PSA was 3.1 but it had spread to his bladder. That was 7 years ago and it seems his treatment was successful.

PSA tells you there is a problem but cannot reliably tell how serious the problem might be.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 Dec 2017 at 21:55
Hi there
It’s such a variable cancer that you simply can’t take another man’s stats and use them to map your own, I know I tried at the outset for us. Ours were, PSA 25,Gleason 10, spread to lymph nodes and bones. That was 7 years ago! I’ve seen men with much higher PSAs and with more spread do as well and men with lower PSA and less spread do worse. There are many types of prostate cancer (last I heard I think 27). All you can do is wait and see, go through the diagnostic process, keep your nerve and enjoy your Christmas. Time will pass, though we have little or no memory now of how that time did pass back then in Dec 2010, in fact we got our full diagnosis on this day in 2010. I don’t think either of us thought we would be celebrating this Christmas, but we are.

I’d say tell your children, they are adults and would want to know, I know ours did. They were upset but they have adjusted as they have had to. Obviously, you know them best so it’s somehting only you can decide upon. We couldn’t keep secrets from ours, my face would have given the game away anyway.

Good luck with the diagnostics and let us know what happens, we will be thinking of you.

Devonmaid
User
Posted 27 Dec 2017 at 19:14

Hi...after a nice Xmas, I now have my PR scan / digital exam and ?biopsies tomorrow. If the gland feels big but not hard /irregular...Will they still do biopsies? I still feel very well...please not in my bones! I will update later. Dare I ask him for outlook before biopsy results come in? Really need some optimism. Ian.

User
Posted 27 Dec 2017 at 20:01

They have to do biopsies to find out what kind of prostate cancer it is (there are at least 27 different types) and to find out your Gleason score. The only time they don't do a biopsy is where other tests have shown that the cancer is so advanced that there can be no doubt - for example if a man is admitted to hospital with serious bone fractures and the medics realise that the fractures are because prostate cancer has spread to the bones, they might not do a biopsy.

So while you are saying 'please no bone spread' you should also be saying 'please let me need a biopsy' as to not need a biopsy would be very worrying.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 27 Dec 2017 at 20:06

Thanks Lyn.....you are right of course. Just getting a bit twitchy!....not even Valium helps!!    ian

User
Posted 28 Dec 2017 at 14:46

I’ve found that Sertraline helps. Was on Mirtazapine but had to come off because of chemotherapy as both effect the white blood cell count. The only thing with either of them is that they take a few weeks to work so you have to bear with it for a while. Mirtazapine also has a sedative effect if you are having problems sleeping.

Dave

User
Posted 29 Dec 2017 at 12:51

Update:   attended consultation  yesterday at Wansbeck hosp. Northumbarland. Manual dig exam....."doesn't feel particularly abnormal" ...but a couple of areas of interest.Looked at GP's blood report..commented that the Calcium ( or Calcium enzyme) was ok and said this indicated bones where ok! Re did blood test...looking at PSA level only. Biopsies taken .No local abnormal nodes felt. Said I did not need surgery...probably Hormone th. Called this a.m. to attend CT scan on Sunday. Then for bone scan sometime, then for recall for further info.


Feel quite positive!!


 

User
Posted 29 Dec 2017 at 13:17

Hormone therapy (HT) on its own is used to control cancer that cannot be cured. Sometimes HT is used with radiotherapy as a curative treatment path. Fingers crossed for you that the doctor is suggesting the second option rather than the first. Perhaps they think the first PSA test was falsely high / faulty?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Dec 2017 at 13:57

I think he was suggesting HT...then moving to alternatives if this becomes ineffective . The specialist nurse suggested the HT may give me some years ...then move to other options.

Edited by member 29 Dec 2017 at 14:00  | Reason: Not specified

User
Posted 29 Dec 2017 at 14:11

Best not to speculate but wait results of complete diagnosis and what treatment options in your case.

Barry
 
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