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help PSA 9.7

User
Posted 24 Jul 2018 at 15:53

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 24 Jul 2018 at 16:29
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 16:39

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 17:03

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 17:30

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 18:28

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 19:27
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 19:37

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 19:38

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

 

User
Posted 24 Jul 2018 at 19:57
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 20:08

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 20:20
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 20:25

oh I give up. thanks Chris.

User
Posted 24 Jul 2018 at 20:53

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 21:00  | 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 21:01
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 21:04

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 21:11

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 21:23

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 21:35
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 22:39

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..

 
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