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So worried

User
Posted 14 Dec 2018 at 09:52

Hi everyone, I am new on here (and new to the world of PCa).  My 55 year old Husband recently went to the Dr for routine bloods, his kidney function  was low (58) so bloods were repeated and unbeknown to him his PSA was checked.  His kidney function  had increased to 64 but his PSA was 20.  He has no real symptoms although has has ED for 2 years (which in hindsight is a symptom that the GP should have picked up - but that's a question to the GP at another time,not now), his urine flow on the whole is good, no urgency etc, sometimes he says it tails off and isn't as strong.   He has low back ache (but then is a builder and does get aches and pains). He has a 6mm kidney stone also.  He has been referred to a urologist and had a DRE which he was told "His prostate didn't feel great, but didn't feel malignant either". He is booked in for an MRI this Wednesday coming.  Is you can imagine we are sick with worry, I am very tearful and trying to hide if from our 2 teenagers.  Could a kidney stone cause a high PSA reading? 

User
Posted 17 Dec 2018 at 08:14
Hi Vanessa,

As others have said, the waiting is the worst part. You'll feel better when you know the results, no matter what they are, because that takes away the uncertainty.

If I may inject a note of optimism, a PSA of 20 may very well indicate localised prostate cancer, but it's not a death sentence. It's a curable condition, and the overwhelming majority of men diagnosed with it go on to live normal lives after treatment. So if (as I strongly suspect it will) the result does come back positive, don't worry about it. It's a medical condition that can be and will be treated and then you can get on with your lives.

All the best,

Chris
User
Posted 18 Dec 2018 at 10:09

Originally Posted by: Online Community Member


Chris


I recognise you are trying to give some support but you are not a doctor. The poster is reporting her husbands PSA as >20 and you are telling her this is a curable condition with little knowledge of the specific case.


No, I did not. I said that:


1. A PSA of 20 may very well indicate localised prostate cancer.


2. Localised prostate cancer is a curable condition.


Both of those statements are absolutely true.


The appropriate tests will of course reveal what Vanessa's husband's diagnosis actually is, but there really is no reason for assuming "doom and gloom" at this stage in the proceedings, and every cause for optimism.


Regards,


Chris


 

Edited by member 18 Dec 2018 at 10:17  | Reason: Not specified

User
Posted 14 Dec 2018 at 12:24

Hi Vanessag 


I can relate to how you're feeling. My husband, 67, had a PSA of 30 and he's had an MRI followed by a biopsy, we now await the results. 


It is really hard all this waiting, many on here say it's the worst part. As you will see, a lot of men on here live good, productive and happy lives no matter the outcome and this I find comforting. This is a supportive place filled with quite knowledgeable people.


I wish you and your husband all the best.


Janet

User
Posted 14 Dec 2018 at 12:52
Hello Vannessag,
Sorry to read about your situation. It is true that urine infections, recent sexual activity, or cycling can all cause raised PSA levels. But, given the prostate “didn’t feel great” it’s best to get things checked now.
If he doesn’t have prostate cancer great but if he does treating as early as possible is crucial.
The waiting is very difficult but it’s best to find out one way or the other. Ignoring it isn’t a good idea.
Please let us know how he gets on and come back with any further questions.
Also if there is a Maggie’s centre within a reasonable travelling time you could make an appointment to speak to someone there, they are there for cancer patients, spouses/partners, family and friends.
Maggie’s has been a great resource for me when I needed it, they are very knowledgeable and caring.

Ido4

User
Posted 14 Dec 2018 at 22:15

Dont forget the PCUK specialist nurses


08000748383 


they are fantastic about all things before and after diagnosis

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

User
Posted 14 Dec 2018 at 22:29
Back ache is a common symptom of kidney stones. His PSA is high but we have had men heee with PSA of 70-80 who got the all clear; 20 doesn't tell you anything except that it needs checking out. The kidney stone wouldn't cause the PSA rise but if the kidney stone is affecting the efficiency of his urinary tract, unfmduagnosed UTI would push his PSA up.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Dec 2018 at 08:06
I have a feeling the biopsy will be booked if it is required once the MRI is analysed.
Have you been to a Maggie’s centre or phoned the PCUK nurses?
I think you would find that helpful.
The waiting is awful and the staff at PCUK or Maggie’s will help put things into some kind of order in yiur mind.
Take care.

Ido4

User
Posted 17 Dec 2018 at 10:32
Hi Venessa

There is not much more I can say other than my wife was much the same as you until I had my diagnosis and we were able to talk to a McMillan nurse and have everything explained she sill worries a bit but knows that’s it is curable

The most annoying thing is her asking me very 5 minutes if I’m OK

Bob
User
Posted 18 Dec 2018 at 08:10

Just wanted to wish you all the best for Friday. Take care.


Janet

User
Posted 30 Dec 2018 at 01:42
There are no known cases of needle tracking (cancer spread through the spaces where biopsies are taken) with TRUS biopsy. There are a handful of reported cases with template biopsy but the risk is very small.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 30 Dec 2018 at 18:24

This is interesting on the subject of needle tracking by the Sperling Prostate Center (who incidentally are often referred to for the (Focal
Ablation Treatment (FLA) they administer. The risk of biopsy needle tracking for PCa is minuscule, although increased for some other cancers.
https://sperlingprostatecenter.com/truth-biopsy-track-seeding/


 


 


 


 

Barry
User
Posted 31 Dec 2018 at 17:49

Cancer spreads to the bones through the bloodstream.


You can have mets to the bone but not the nodes or organs, spread to the nodes but nowhere else, mets to soft organs without spread to any other place, or mets to lymph/bone but still contained in the gland. 

Edited by member 31 Dec 2018 at 17:53  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
Show Most Thanked Posts
User
Posted 14 Dec 2018 at 12:24

Hi Vanessag 


I can relate to how you're feeling. My husband, 67, had a PSA of 30 and he's had an MRI followed by a biopsy, we now await the results. 


It is really hard all this waiting, many on here say it's the worst part. As you will see, a lot of men on here live good, productive and happy lives no matter the outcome and this I find comforting. This is a supportive place filled with quite knowledgeable people.


I wish you and your husband all the best.


Janet

User
Posted 14 Dec 2018 at 12:52
Hello Vannessag,
Sorry to read about your situation. It is true that urine infections, recent sexual activity, or cycling can all cause raised PSA levels. But, given the prostate “didn’t feel great” it’s best to get things checked now.
If he doesn’t have prostate cancer great but if he does treating as early as possible is crucial.
The waiting is very difficult but it’s best to find out one way or the other. Ignoring it isn’t a good idea.
Please let us know how he gets on and come back with any further questions.
Also if there is a Maggie’s centre within a reasonable travelling time you could make an appointment to speak to someone there, they are there for cancer patients, spouses/partners, family and friends.
Maggie’s has been a great resource for me when I needed it, they are very knowledgeable and caring.

Ido4

User
Posted 14 Dec 2018 at 22:15

Dont forget the PCUK specialist nurses


08000748383 


they are fantastic about all things before and after diagnosis

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

User
Posted 14 Dec 2018 at 22:29
Back ache is a common symptom of kidney stones. His PSA is high but we have had men heee with PSA of 70-80 who got the all clear; 20 doesn't tell you anything except that it needs checking out. The kidney stone wouldn't cause the PSA rise but if the kidney stone is affecting the efficiency of his urinary tract, unfmduagnosed UTI would push his PSA up.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Dec 2018 at 06:49

Thankyou everyone for your replies.  I got his PSA wrong it is 21.3 which is even worse.  Reading previous posts and it seems everyone has am MRI and a biopsy, our consultant hasn't mentioned a biopsy yet, should I be asking for that to get a date in the diary?


The waiting as everyone says is destroying me (my Husband seems to be dealing with it better). I have a stash of sertraline in the cupboard that I was prescribed but never took, so have decided to take them (I shall make an appointment with the GP at some point to discuss this).   Am getting paranoid about everything my Husband does, every little cough or expression or falling asleep in the chair I find myself watching and analysing, have even been listening to him weeing and trying to figure out if it is normal. It really is the worse torture and I do have a feeling of dread that I just can't shake off

User
Posted 17 Dec 2018 at 08:06
I have a feeling the biopsy will be booked if it is required once the MRI is analysed.
Have you been to a Maggie’s centre or phoned the PCUK nurses?
I think you would find that helpful.
The waiting is awful and the staff at PCUK or Maggie’s will help put things into some kind of order in yiur mind.
Take care.

Ido4

User
Posted 17 Dec 2018 at 08:14
Hi Vanessa,

As others have said, the waiting is the worst part. You'll feel better when you know the results, no matter what they are, because that takes away the uncertainty.

If I may inject a note of optimism, a PSA of 20 may very well indicate localised prostate cancer, but it's not a death sentence. It's a curable condition, and the overwhelming majority of men diagnosed with it go on to live normal lives after treatment. So if (as I strongly suspect it will) the result does come back positive, don't worry about it. It's a medical condition that can be and will be treated and then you can get on with your lives.

All the best,

Chris
User
Posted 17 Dec 2018 at 10:32
Hi Venessa

There is not much more I can say other than my wife was much the same as you until I had my diagnosis and we were able to talk to a McMillan nurse and have everything explained she sill worries a bit but knows that’s it is curable

The most annoying thing is her asking me very 5 minutes if I’m OK

Bob
User
Posted 17 Dec 2018 at 16:57

Thankyou everyone for your help and advice.  I have spoken to the consultants secretary and she has made us an appointment for this Friday morning  (MRI being done this Wednesday) and we can discuss the results and what the plan of action is needed then.


I have also spoken to the Macmillan nurses, who were very helpful and helped to reassure me and gave me some good advice.


Thanks again 

User
Posted 17 Dec 2018 at 17:18

Good to hear that you now have an appointment. With a PSA of 20, regardless of what the MRI shows, the next step will probably be a biopsy. Unfortunately it's not terribly uncommon for prostate cancer not to show up on an MRI, and a biopsy is the only way to know whether or not cancer is present.


If a biopsy is arranged, don't worry about it! It's a minor, routine procedure. The worst bit about it is the 2-week wait for the results,  unfortunately.


All the best,


Chris


 

Edited by member 17 Dec 2018 at 17:19  | Reason: Not specified

User
Posted 18 Dec 2018 at 00:01

Chris


I recognise you are trying to give some support but you are not a doctor. The poster is reporting her husbands PSA as >20 and you are telling her this is a curable condition with little knowledge of the specific case.


From my perspective this is bang out of order, I was diagnosed in August this year with incurable PCa with bone mets on a PSA of less than 14, how can you make a rudimentary "diagnosis" on Vanessa's husbands prognosis with no medical knowledge of the case?


It's not helpful or supportive.


 

User
Posted 18 Dec 2018 at 00:34

Thankyou all for your help, but I think maybe I should not read anymore comments until I have spoken to the consultant on Friday.

User
Posted 18 Dec 2018 at 08:10

Just wanted to wish you all the best for Friday. Take care.


Janet

User
Posted 18 Dec 2018 at 10:09

Originally Posted by: Online Community Member


Chris


I recognise you are trying to give some support but you are not a doctor. The poster is reporting her husbands PSA as >20 and you are telling her this is a curable condition with little knowledge of the specific case.


No, I did not. I said that:


1. A PSA of 20 may very well indicate localised prostate cancer.


2. Localised prostate cancer is a curable condition.


Both of those statements are absolutely true.


The appropriate tests will of course reveal what Vanessa's husband's diagnosis actually is, but there really is no reason for assuming "doom and gloom" at this stage in the proceedings, and every cause for optimism.


Regards,


Chris


 

Edited by member 18 Dec 2018 at 10:17  | Reason: Not specified

User
Posted 21 Dec 2018 at 14:47

Hi Everyone 


Just to update you all.  Husband had mpMRI on Wednesday and we met with the consultant this morning.  There is an abnormality in the prostate (as we expected) however it hasn't broken out.  Next step is a CT on his kidneys (suspected stone), and a biopsy booked in on 7th January (fusion biopsy MRI?).  Also a bone scan is being arranged. The waiting has been torture (even though things are being done very quickly), trying to carry on as normal with 2 teenagers has been very very hard, however we are encouraged by this bit of news and feeling a little more positive. 


Vx

User
Posted 21 Dec 2018 at 15:38
Thanks for the update. It’s good that the abnormality seen on MRI hasn’t broken out.
Best wishes, Ido4

Ido4

User
Posted 21 Dec 2018 at 16:41
Reasonable news, Vanessa, and the tests are entirely as one would expect. It's a template biopsy under general anaesthetic that your husband is having?

All the best,

Chris
User
Posted 21 Dec 2018 at 17:41

Hi 


He said it wasn't a template biopsy, it is a fusion guided biopsy under GA


Vx

User
Posted 21 Dec 2018 at 19:12
Thanks. A fusion biopsy and a template biopsy are essentially the same procedure in terms of the physical process of taking the samples, the only difference being that in a template biopsy samples are taken using a rectangular grid of holes (the “template”), while in a fusion or targeted biopsy sampling is guided using the results of the MRI scan.

Very best of luck to you,

Chris
User
Posted 22 Dec 2018 at 23:29

Thankyou....Had a copy letter from consultant to his GP today, stating a Pi-Rad of 2/3 and 4, and that there will be a Trus fusion biopsy.


The one thing we are worried about is at what stage could it spread from being localised to breaking out?

User
Posted 23 Dec 2018 at 04:34

Looks like he is getting the best treatment with ‘The Full Monty’ of tests, with a kidney stone as a bonus!


Most prostate cancers are usually very slow growing, so don’t worry too much about the capsule being breached in the next few weeks or months. In any case they can’t really tell until the prostate is biopsied after surgical removal, although they have more idea with a template biopsy as to the exact location of the lesion. Mine was thought to be contained following a template biopsy with 42 cores sampled, in the event it was not. Am I bovvered? No.


If and when cancer is confirmed following the biopsy, you will have plenty of time to consider options for treatment (if any at all), and make sure you obtain second opinions whichever treatment plan you go for.


Enjoy your Christmas.


Cheers, John.

Edited by member 23 Dec 2018 at 05:29  | Reason: Not specified

User
Posted 24 Dec 2018 at 11:18

Hi Everyone


I'm just rereading the consultant letter and am unclear about something and my interpretation of what the consultant has said...


'MRI has shown some PIRADS 2/3 and 4 lesions within the prostate gland."


Now does that mean 4 lesions that are 2/3, or lesions that are 2/3 and 4? 


Thankyou for all your support x

User
Posted 24 Dec 2018 at 11:37

Originally Posted by: Online Community Member


Hi Everyone


I'm just rereading the consultant letter and am unclear about something and my interpretation of what the consultant has said...


'MRI has shown some PIRADS 2/3 and 4 lesions within the prostate gland."


Now does that mean 4 lesions that are 2/3, or lesions that are 2/3 and 4? 


Thankyou for all your support x




Hmm .....All a bit ambiguous innit! 

My interpretation would be lesions that are PIRADS 2, 3 and 4.... 
Otherwise the consultant would have written it as you describe.... 4 lesions that indicate PIRADS 2/3 ? 
Which perhaps is why they are going ahead with a Biopsy? I may well be wrong ( I hope I am ) 
Others may have a different take on it... 

Best Wishes 
Luther 



User
Posted 29 Dec 2018 at 23:01
Hi Everyone, another question (and it may sound really stupid).......when they do the biopsy could that disturb the cancerous cells and allow them to spread from the prostate? All sorts of questions going through our heads......
User
Posted 30 Dec 2018 at 01:42
There are no known cases of needle tracking (cancer spread through the spaces where biopsies are taken) with TRUS biopsy. There are a handful of reported cases with template biopsy but the risk is very small.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 30 Dec 2018 at 18:24

This is interesting on the subject of needle tracking by the Sperling Prostate Center (who incidentally are often referred to for the (Focal
Ablation Treatment (FLA) they administer. The risk of biopsy needle tracking for PCa is minuscule, although increased for some other cancers.
https://sperlingprostatecenter.com/truth-biopsy-track-seeding/


 


 


 


 

Barry
User
Posted 31 Dec 2018 at 16:46
Thankyou both for your replies, so it wasn't a silly question lol All sorts of things go through my head!
Bone scan done today, biopsy next Monday. On his MRI the other week the consultant said there was no spread to the lymph nodes but I'm wondering why he is having a bone scan as would the cancer not travel to the bones that way?
Thankyou x
User
Posted 31 Dec 2018 at 17:04
A bone scan is a completely normal diagnostic procedure, and is just done as a precautionary check. It absolutely does NOT mean that anyone thinks that the cancer has spread, so do try not to be concerned about it (easier said than done, I know from personal experience).

You're almost at the end of the diagnostic road now, and most people find that the toughest time from an emotional perspective. Things get a lot easier once you know where you stand.

Very best wishes,

Chris
User
Posted 31 Dec 2018 at 17:47
Thankyou Chris. How would the cancer spread to the bones though?
User
Posted 31 Dec 2018 at 17:49

Cancer spreads to the bones through the bloodstream.


You can have mets to the bone but not the nodes or organs, spread to the nodes but nowhere else, mets to soft organs without spread to any other place, or mets to lymph/bone but still contained in the gland. 

Edited by member 31 Dec 2018 at 17:53  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 07 Jan 2019 at 13:59
Biopsy day today, all went well. Appointment for results in 10 agonising days.
User
Posted 07 Jan 2019 at 14:27
Which biopsy is he having?

Best of luck.

Cheers, John.
User
Posted 07 Jan 2019 at 18:05

It was a trus fusion MRI ultrasound biopsy. Went well and not too sore 

User
Posted 08 Jan 2019 at 14:39

Originally Posted by: Online Community Member


Looks like he is getting the best treatment with ‘The Full Monty’ of tests, with a kidney stone as a bonus!


Most prostate cancers are usually very slow growing, so don’t worry too much about the capsule being breached in the next few weeks or months. In any case they can’t really tell until the prostate is biopsied after surgical removal, although they have more idea with a template biopsy as to the exact location of the lesion. Mine was thought to be contained following a template biopsy with 42 cores sampled, in the event it was not. Am I bovvered? No.


If and when cancer is confirmed following the biopsy, you will have plenty of time to consider options for treatment (if any at all), and make sure you obtain second opinions whichever treatment plan you go for.


Enjoy your Christmas.


Cheers, John.



 


John


Have just tried to PM you but your inbox is full

User
Posted 08 Jan 2019 at 14:54

My email is re.vision@btinternet.com


Cheers,  John.

User
Posted 16 Jan 2019 at 19:44
Just back from consultant appointment for biopsy results. We have a result of locally advanced Pca, 34 samples taken and 11 showed cancerous, Gleason 3+4 (7). MDT meeting next Thursday and appointment a week on Monday, and if we decide surgery, in a couple of weeks. Feeling strangely less stressed now we know what we are dealing with.
User
Posted 17 Jan 2019 at 03:44
Well it could be worse. A friend is G3+4=7 and he has been on active surveillance for four years, although his PSA has risen to 11 now, so I guess he’ll have to come off it soon.

Something definitely worth taking advice on at your meeting with the MDT?

Best of luck.

Cheers, John.
User
Posted 17 Jan 2019 at 07:28

Thanks John


That's reassuring that your friend has been on AS, my HB PSA is 21.3 so not sure if that would be an option. But TBH he wants the damn thing out ASAP.


Vx


 

 
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