I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

help PSA 9.7

User
Posted 24 Jul 2018 at 16:53

Hi this is my first post.

I am 62 white British. My older brother has recently been diagnosed with Pc so I had a PSA test came back 9.7  in 2013 was 2.8

Urgent appointment arranged with URO he has asked for scan with dye injected (is this a multi parametric)  wanted me to have biopsy but I cancelled because I can't handle it at the moment been reading too many horror stories about people having a negative result but with lasting ED or urinary issues .

was depressed for years due to no libido but doc put me on TRT with fantastic results never felt better. I'm so afraid not just of Pc diagnosis but no more TRT etc.

Any advice please

User
Posted 05 Aug 2018 at 20:19
So, Matron,

I think we ought to agree to disagree about the TRUS biopsy versus template biopsy, to save our breath (or these days, keystrokes) in the future.

When I see the eminent Professor of Urological Surgery - he who cannot be named - next Tuesday, I will enquire of him as to his opinion regarding TRUS vs template biopsies.

That will be my last post on the matter, except if a ‘newbie’ needs advice, whereupon I will advise against a TRUS unless there are extenuating circumstances precluding a template.

Cheers, John

Show Most Thanked Posts
User
Posted 24 Jul 2018 at 17:29
Your urologist has sent you for a cat scan, nothing to do with multi parametric. Your TRT may have contributed to a heightened PSA. You should discuss this with the consultant. Personally, I would not shrink from a biopsy, if a DRE has shown anything suspicious about your prostate. But you don't mention having had one. You may just have a normal, soft but enlarged prostate with no cancer. You need to find out which Itbis..

If you have PCa, very big "if" at the moment, the treatment will likely involve a period in which to prevent the disease spreading, you will be advised to take pills or have injections to reduce your testosterone. This will reduce your libido. Nothing to be afraid of, if the alternstive is to let PCa rule your shortened life....

AC

User
Posted 24 Jul 2018 at 17:39

Thank you. forgot to mention DRE showed enlarged 60cc prostate with possibly slight firmness on one side.  Also I have suffered from Chronic prostatitis in the past but have not had it for about 3yrs

 

User
Posted 24 Jul 2018 at 18:03

Originally Posted by: Online Community Member

Urgent appointment arranged with URO he has asked for scan with dye injected (is this a multi parametric)  wanted me to have biopsy but I cancelled because I can't handle it at the moment been reading too many horror stories about people having a negative result but with lasting ED or urinary issues .

 

It seems you have looked at some rubbish websites - biopsies do not cause ED or urinary issues (although I guess there will be some men who get ED simply because they are frightened of having cancer). It is the treatments that may cause ED / incontinence. Better to know whether a) you actually have PCa b) it needs treatment or could be manged through close monitoring. A slight firmness is a concern so I can see why the urologist wants to start diagnostic tests. 

You could ignore all of this and not get a diagnosis if you wish but it is important to understand that if indeed you do have PCa which goes untreated and becomes advanced, you will end up with ED and incontinence anyway plus you will die much sooner. And a PCa death is not usually an easy pain-free affair. Basically, avoiding diagnosis does not avoid the side effects you fear whereas treatment does not automatically lead to those side effects. 

If you get the all-clear, you will have a baseline for future monitoring. 

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

User
Posted 24 Jul 2018 at 18:30

Thank you for taking the time to advise me I know you're right but I'm such a coward. I have been feeling so much better the last couple of years now it all seems under threat.  For me no libido seems like game over.

How fast does it spread if I have got it? could I get a couple more years maybe before it does for me.  Rather that than another 10 with no libido and hot flushes etc. (I say that now LOL)

I have read that there are blood tests for enzymes and free PSA and bound PSA. Also other types of MRI that may be an alternative to a blind biopsy.

Also if I have a biopsy and it's negative but my PSA remains high, they probably think I still have it and it was missed so maybe more biopsies in future??

User
Posted 24 Jul 2018 at 19:28

O

It was nearly five years ago, but I remember describing my Trus biopsy as a walk in the park.

Thanks Chris

User
Posted 24 Jul 2018 at 20:27
I had a template biopsy (the "gold standard" for PCa diagnosis) yesterday. Seriously, it's no big deal. I didn't know a thing about it - one moment I was in the anaesthesia room, and an instant later I was waking up on the recovery ward. I felt nauseous from the anaesthetic and had trouble peeing for a few hours due to the swelling of my prostate, and today it's a little sore when I sit down, but that's it. It's absolutely nothing to be scared of.

User
Posted 24 Jul 2018 at 20:37

That's really helping Chris thank you.

Does anyone know why we are offered the Trus type more frequently than the template type. Would my Uro think I'm being awkward if I requested the template type?

 

User
Posted 24 Jul 2018 at 20:38

Chris, did you have any blood in your pee or in anything else?

 

User
Posted 24 Jul 2018 at 20:57
Yes, when I start peeing it's pink, then goes clear. I had a TRUS biopsy at the start of my diagnosis, and the same then. Took about two weeks for the blood to disappear. Absolutely nothing to worry about - it's entirely normal.

As to why is a TRUS biopsy more common, I think the simple answer is that it's a much cheaper and more straightforward procedure. In my case I was subsequently referred for a template biopsy because the findings of the TRUS weren't really consistent with my relatively high PSA of 32, so my urologist wants to find out if there's something more aggressive lurking in the part of the prostate that a TRUS can't get at.

Biopsies are honestly nothing to be scared of. Please have one - it's the only certain way to find out whether or not you have prostate cancer.

Chris

Chris

User
Posted 24 Jul 2018 at 21:08

Thanks to all that are trying to help me.

I just found this info on NHS England web site it's exactly what I've been looking for.

Would really appreciate those with more knowledge giving their comments on how I might get this instead of a biopsy.

https://www.england.nhs.uk/2018/03/nhs-one-stop-shop-for-prostate-cancer-means-faster-and-more-accurate-diagnosis/

User
Posted 24 Jul 2018 at 21:20
Unfortunately it's not as straightforward as that article makes it sound. I had a multi-parametric MRI scan as my first diagnosis test, and it came back clear. I then had a biopsy, and it found cancer. Small prostate tumours often don't show up in MRI scans. Seeing cancer cells from a biopsy under a microscope is the only way to be sure.

So yes, as the article says, if an mpMRI shows something suspicious, it can then be used to guide a biopsy. The problem is that "false negatives" are common. A clear MRI does not mean no cancer.

Chris

User
Posted 24 Jul 2018 at 21:25

oh I give up. thanks Chris.

User
Posted 24 Jul 2018 at 21:53

Absolutely. My Multi Parametric MRI showed only one significant lesion. The scanner was a t1.5 and I commented to the technician why it wasn’t a t3 (latest tech) he told me that they were being used in research. I said they give better definition he had no answer. Injections are a die and relaxant. Slight sensation of sickness due to drugs.

Professor contrasted my saturation biopsy vs image and was surprised that significant tumours did not show on the MRI. He assumed biopsy pot error.

You can elect to do biopsyunder general anaesthetic if you want. I think my surgeon preferred it because he was more able to manover the body into different positions. My biopsy stopped a partial prostectomy call. They may have left significant tumour behind if I only had an mri guided biopsy targeting the single lesion. Your large prostate works in your favour. Mine was measured at 19ml so your PSA would be higher naturally. My DRE negative, yours positive. Welcome to the lottery

Post biopsy symptoms - soreness, bruising, blood in pee slightly uncomfortable to pass, burning sensation in coccyx. Nothing to worry about

The weird thing about transitioning from the world of complete ignorance to knowing you have an elevated PSA comes home fast when you lay on that scanner bed it suddenly becomes very real and quite emotional. You are quite likely to say your first prayer at that point.

Fresh

 

Edited by member 24 Jul 2018 at 22:00  | Reason: because auto correct was invented by Satan

Base jumping without a parachute should be frowned at, never criticised. Fresh

User
Posted 24 Jul 2018 at 22:01
Your uro has already booked scans for you. The most reliable route to diagnosis is a biopsy and an MRI; which order they come is less important than making sure that you do have both. My husband had TRUS biopsy which found cancer, the subsequent scans were clear. He had the biopsy on his way to work and didn’t really think about it again until he got a letter saying to come for the results. No blood or any other problems.

Don’t confuse loss of libido with loss of erectile function, they are different things entirely and most men keep their libido. And even if you did have cancer and did need treatment, the vast majority of men can get erections with or without help.

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

User
Posted 24 Jul 2018 at 22:04

Thanks Fresh. Just read your profile.

Can I ask what your treatment is going to be?

Also seems like your saying no alternative to getting my Prostate turned into a pin cushion.

User
Posted 24 Jul 2018 at 22:11

Thanks lynEyre

You are helping but what's the point of an erection with no Libido should I take up pole vaulting. No offence intended just trying to keep a sense of humour whilst drowning my sorrows in alcohol.

User
Posted 24 Jul 2018 at 22:23

My treatment was RALP (Robot Assisted Laparascopic Prostectomy). You May take an alternate route- don’t rush to take that decision. You need a lot of info before you make that or any call. My choice was influenced mostly by a belt and braces approach. Surgery left Radiotherapy on the shelf if needed. 

I interviewd a surgeon who does operate (selectively) on Radiotherapy patients with reoccurrence. He described how it was like cutting through concrete (his words) and risky plus the natural surgical planes are broken down as the prostate is radiated. Etc .... lots to discuss. 

The biggest point here though is that you owe it to everyone else in your life to take it seriously and the guys in this forum who are fighting major late stage disease. plus coutless other lives that have qued up in hope for trials, and sat in control arms of trials and died to get us this far.

The alternate is I can take you BASE jumping which I guarantee will cause incontinence and erectile function loss and probably poopy nickers as well.

Fresh

Base jumping without a parachute should be frowned at, never criticised. Fresh

User
Posted 24 Jul 2018 at 22:35
Suggest you download or obtain a hard copy of the 'Toolkit' from the publications section of this charity. It will give you a better understanding of PCa and various treatments, if/when treatment is needed.
Barry
User
Posted 24 Jul 2018 at 23:39

Originally Posted by: Online Community Member
Your uro has already booked scans for you. The most reliable route to diagnosis is a biopsy and an MRI; which order they come is less important than making sure that you do have both. My husband had TRUS biopsy which found cancer, the subsequent scans were clear. He had the biopsy on his way to work and didn’t really think about it again until he got a letter saying to come for the results. No blood or any other problems.

Don’t confuse loss of libido with loss of erectile function, they are different things entirely and most men keep their libido. And even if you did have cancer and did need treatment, the vast majority of men can get erections with or without help.

Latest research would say MPMRI is diagnostic on its own for significant (ie needs treating) prostate cancer. It is definitely better to have the MRI before biopsy, MRI after biopsy is clouded by the damage from the biopsy needles, it also provides a target for a susequent biopsy..

User
Posted 24 Jul 2018 at 23:51

Originally Posted by: Online Community Member

Latest research would say MPMRI is diagnostic on its own for significant (ie needs treating) prostate cancer. It is definitely better to have the MRI before biopsy, MRI after biopsy is clouded by the damage from the biopsy needles, it also provides a target for a subsequent biopsy..

 

For many yes, but not all cases. Those prostate cancers that do not show up on scans would be left unchecked if mpMRI was used to rule out biopsy. I am particularly thankful that John had it the other way round - the wait of two weeks after biopsy to ensure MRI is not skewed is not such a long time in the bigger scheme.  

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

User
Posted 24 Jul 2018 at 23:54

Originally Posted by: Online Community Member

Thanks lynEyre

You are helping but what's the point of an erection with no Libido should I take up pole vaulting. No offence intended just trying to keep a sense of humour whilst drowning my sorrows in alcohol.

 

But if you either don't have cancer / have a low grade cancer that does not need any treatment / have a contained cancer and choose surgery, your libido will be unaffected AND you will most likely still have erections. If you have a contained cancer and choose radiotherapy or brachytherapy you may be advised to have hormones for a period of time and you may lose your libido but it comes back when you stop the hormones. 

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

User
Posted 25 Jul 2018 at 00:19

lynEyre

you are sounding like my saviour. how come you know so much about prostate issues?

thank you so much for this post. I'm truly helped. 

User
Posted 25 Jul 2018 at 08:17

Originally Posted by: Online Community Member

lynEyre

you are sounding like my saviour. how come you know so much about prostate issues?

thank you so much for this post. I'm truly helped. 

Read Lynns profile... 3 men in her life affected by it 

User
Posted 01 Aug 2018 at 16:27

Hi all I saw my GP to discuss the fact that I can't face a biopsy and I can't get hold of my Urologist to discuss with him.

GP had my PSA result and it's come down to 6.2 he says he would not refer me to a Uro if the original test had been at that level and that he will write to him requesting an app to discuss this and my MRI which I had 2 days ago.

I read recently that PSA level is related to prostate size, since mine is 60cc about twice normal size then PSA of 6 is expected, anyone agree?

Any comments?

User
Posted 01 Aug 2018 at 18:23

I did read that  it can be usual for a man's PSA to be as high as 10 percent of his prostate weight  in cases of BPH.That  in your case could account  for your PSA of 6.

 

However it's not as simple as that as I have seen only too well on here that men can have PCa with very low PSA's. Some prostate cancers just do not produce much PSA.

We don't know how much of my husband's PSA could be attributed to his existing  BPH and how much to the cancer. His pre-op PSA was 9.2 and his prostate on removal weighed 70cc but we cannot assume the cancer just produced 2.2

 

Best Regards

Ann

User
Posted 01 Aug 2018 at 21:58
Bit shocking that your GP wouldn’t refer a man with a PSA of 6 ... pity any other men who go to him / her for advice. My husband’s PSA was 3.1 and it had already spread to his bladder.

I can see the sense of waiting to hear the specialist’s interpretation of your MRI results. However, if there is any concern, believe me that having uncontrolled prostate cancer is far worse than having a biopsy.

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

User
Posted 01 Aug 2018 at 22:15
You really need to ask yourself which is the more serious issue: your (very understandable) nervousness about having a biopsy, or finding out for sure whether or not you have prostate cancer.

As several people have now told you, a biopsy involves minor discomfort at worst. Is it really worth putting your life at risk in order to avoid that?

It's now 9 days since I had my template biopsy and all side effects have entirely vanished. No more blood when I pee, and no discomfort when I sit down.

Chris

User
Posted 02 Aug 2018 at 10:04

Originally Posted by: Online Community Member

Hi all I saw my GP to discuss the fact that I can't face a biopsy and I can't get hold of my Urologist to discuss with him.

GP had my PSA result and it's come down to 6.2 he says he would not refer me to a Uro if the original test had been at that level and that he will write to him requesting an app to discuss this and my MRI which I had 2 days ago.

I read recently that PSA level is related to prostate size, since mine is 60cc about twice normal size then PSA of 6 is expected, anyone agree?

Any comments?

The problem is it might be twice the size because it's stuffed full of cancer, my GP palmed me off for a year with the "large prostate" excuse - guess what it was large because it was full of cancer! !

If it was an MPMRI and it doesn't show any areas of concern there is some evidence that you can take this as being clear of clinically sibnificant cancer. 

 

User
Posted 02 Aug 2018 at 11:30

Originally Posted by: Online Community Member

Does anyone know why we are offered the Trus type more frequently than the template type. Would my Uro think I'm being awkward if I requested the template type?

 

It’s purely down to cost, as the TRUS is much cheaper for the NHS, not involving a general anaesthetic. My friend who had BUPA cover had a template biopsy right away, TRUS was never mentioned.

I imagine your your urologist would respect your request for a template, as he knows it is the most accurate biopsy. You may have to wait a while - I did, just a few weeks.

User
Posted 04 Aug 2018 at 23:08

Thanks to all for your comments. I was feeling quite positive about things until I read them.

I know you are all trying to give me the best advice and I am grateful for it, but doesn't anyone think it's good that my PSA has come down quite a bit?

Surely if I have cancer then it would stay the same or go upwards?

User
Posted 05 Aug 2018 at 00:33
It is good that it has fallen but it is still twice as high as it should be. You might just have a big prostate, and the 9.7 could have been down to a bit of infection but until you have discussed the MRI results with the specialist you can’t know for sure what needs doing next.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Aug 2018 at 00:42

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

Does anyone know why we are offered the Trus type more frequently than the template type. Would my Uro think I'm being awkward if I requested the template type?

 

It’s purely down to cost, as the TRUS is much cheaper for the NHS, not involving a general anaesthetic. My friend who had BUPA cover had a template biopsy right away, TRUS was never mentioned.

 

That’s not the full story though, is it. The main reasons that men are offered a TRUS more often than a template biopsy are because

a) there is less risk, particularly where a general anaesthetic is concerned

b) research indicates that spread via needle tracking is more likely with template than TRUS

c) for the high number of men diagnosed with a significant tumour, the TRUS is efficient at finding it, particularly if there is a target to aim for based on the scan results

d) the current guidelines / cancer pathway focus on speed of referral and diagnosis - not all regions can offer template biopsy and there are long waits at some of the hospitals that offer it which cause too much delay to diagnosis. 

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

User
Posted 05 Aug 2018 at 08:11

The incidence of needle tracking following either a TRUS or TPM biopsy is considered to be extemely rare.  I researched this prior to having my own TPM biopsy and the below link was the latest information that I could find on this.

https://www.google.co.uk/url?sa=t&source=web&rct=j&url=https://sperlingprostatecenter.com/truth-biopsy-track-seeding/&ved=2ahUKEwibsbvup9XcAhXBK8AKHS8nAEAQFjAAegQICBAB&usg=AOvVaw3ciQrvAr8fC-GwCy-4OjBo

Also the risk of sepsis (although still low) is much greater in a TRUS biopsy vs a TPM biopsy.

User
Posted 05 Aug 2018 at 15:27

I had the biopsy before the MRI, but had to wait six weeks for the MRI having being told this was to give the bruising time to subside to facilitate good MRI results.

User
Posted 05 Aug 2018 at 15:34

While discussing my options with the surgeon he made the point, twice! that if RT doesn't work surgery is, seldom, a successful later course of treatment.

User
Posted 05 Aug 2018 at 15:50
I developed sepsis 2 days after the Trus biopsy, luckily it was diagnosed quickly and just spent 3 days in hospital. The Biopsy itself is nothing to worry about, I was just unlucky.

I’m booked in on the 21st for my RARP.

User
Posted 05 Aug 2018 at 16:22

Luckily I had researched the 2 types of biopsy and even a “low risk of sepsis” was too much, sepsis can be a killer.

 When I went in to see my oncologist I asked her if I could have the template biopsy as I did not want the trus biopsy and she said we don’t do the trus biopsy anymore only template biopsy as there is a risk of sepsis and it’s not as accurate.

that is Weston area health trust,  there probably thousands of patients that had trus biopsies without any issues  and every patient is different but I’m just glad I had the template biopsy as it found I was Gleason 4:5 T2c

User
Posted 05 Aug 2018 at 16:26

Originally Posted by: Online Community Member

The incidence of needle tracking following either a TRUS or TPM biopsy is considered to be extemely rare.  I researched this prior to having my own TPM biopsy and the below link was the latest information that I could find on this.

https://www.google.co.uk/url?sa=t&source=web&rct=j&url=https://sperlingprostatecenter.com/truth-biopsy-track-seeding/&ved=2ahUKEwibsbvup9XcAhXBK8AKHS8nAEAQFjAAegQICBAB&usg=AOvVaw3ciQrvAr8fC-GwCy-4OjBo

Also the risk of sepsis (although still low) is much greater in a TRUS biopsy vs a TPM biopsy.

as the Template Biopsy goes through the perenium it doesn’t puncture any organs containing faeces? So sepsis risk must be close to zero?

 

User
Posted 05 Aug 2018 at 16:28

Originally Posted by: Online Community Member

I had the biopsy before the MRI, but had to wait six weeks for the MRI having being told this was to give the bruising time to subside to facilitate good MRI results.

that rea seems strange way of doing it? I had DRE on 7th Feb, MRI 8th Feb, Template Biopsy 1st March, results 15th March

User
Posted 05 Aug 2018 at 16:58

Yes risk of sepsis negligible for TPM biopsy and from what I've read, between 3% and 5% risk with TRUS biopsy.

Also risk of sepis whilst in hospital on the increase according to this BBC report a couple of days ago

https://www.bbc.com/news/amp/health-45045438

 

Edited by member 05 Aug 2018 at 17:07  | Reason: Correct hyperlink

User
Posted 05 Aug 2018 at 17:54
You don’t need to be a consultant in colo-rectal surgery with a specialty in lower bowel, to realise that multiple perforations of the intestine to obtain biopsy samples from a prostate is fraught with possibilities of infection.

Despite enemas, and post-operative anti-biotics, s*** happens! With the inevitable risks of infections.

The template perineal biopsy avoids all of that.

User
Posted 05 Aug 2018 at 19:08
Yes but I bet most men would rather risk a treatable infection than cancer spread
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Aug 2018 at 20:19
So, Matron,

I think we ought to agree to disagree about the TRUS biopsy versus template biopsy, to save our breath (or these days, keystrokes) in the future.

When I see the eminent Professor of Urological Surgery - he who cannot be named - next Tuesday, I will enquire of him as to his opinion regarding TRUS vs template biopsies.

That will be my last post on the matter, except if a ‘newbie’ needs advice, whereupon I will advise against a TRUS unless there are extenuating circumstances precluding a template.

Cheers, John

User
Posted 09 Aug 2018 at 12:56

ok so the URO called me yesterday and stated that he received the letter from my GP and understood my concerns regarding a biopsy.

He also said that the scan I had was a MP MRI.  Strange that the staff that operate the scanner did not know themselves that their scanner was MP MRI or not??

He said that the outside of my prostate showed clear but the inside was intermediate risk? but said that it could be caused by prostatitis and he will try meds that make it easier to pee.  I said I have no problem with pee and he said yes but your bladder may not empty properly and possible causing infection. He said try this for now and PSA test in 3 Months. He will see me in person on 17th to explain further.

Would be interested to hear from Bollinge re pros and cons of TRUS and template particularly which is most risk for causing prostatitis, ED and incontinence.

You probably all think I'm mad but thanks in advance to all who care to comment.

User
Posted 09 Aug 2018 at 13:34
When I met the Professor on Tuesday, he was running late and so we had no time to discuss the TRUS vs template debate. Sorry.

All I know is that when I was diagnosed, two friends told me independently not to have a TRUS, as they had had one and then were recalled for a more accurate template biopsy. And this forum is littered with stories from men who endured the exactly the same.

I don’t think either of the biopsies carry much of a risk for the conditions you mention.

User
Posted 18 Aug 2018 at 09:22

Originally Posted by: Online Community Member
Your uro has already booked scans for you. The most reliable route to diagnosis is a biopsy and an MRI; which order they come is less important than making sure that you do have both. My husband had TRUS biopsy which found cancer, the subsequent scans were clear. He had the biopsy on his way to work and didn’t really think about it again until he got a letter saying to come for the results. No blood or any other problems.

Don’t confuse loss of libido with loss of erectile function, they are different things entirely and most men keep their libido. And even if you did have cancer and did need treatment, the vast majority of men can get erections with or without help.

Very true Lyn. After 5 months on Triptorelin and 9 fractions of RT my wife and I still enjoy penetrative sex. Yes, I don’t initiate a session, as I have lost the initial desire, but with external stimulation, usually a video and my loving wife’s efforts I can manage an erection and a typical dry ejaculation.

IMHO men on hormone therapy should persevere and not give up blaming lack of testosterone. I accept my opinion may change after my 20 fractions and a year on Triptorelin, but we certainly won’t give up easily.

can I just say that I have heard a lot of bad stories about the effects of Prostap and for that reason alone I am glad I am not on it. Having researched the price of drugs to the NHS, Triptorelin is the cheapest ar £207 per Injection, so as my GP was given the choice of Triptorelin. Zoladex or Prostap, by my Oncologist, I guess his choice was the cheapest, but in my experience, the best

 
Forum Jump  
©2018 Prostate Cancer UK