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First time post , needing a little help !

User
Posted 12 Aug 2018 at 17:26

Hi guys , my husband is 43 , had a psa of 3.0 then down to 2.9 we have had urologist consultation and basically the doctor went from not being too concerned, followed by the dre which he then said the prostate was hard , and gave us leaflets on biopsies and prostate cancer , we are going for mri next sat. My husband has been having night sweats and frequent toliet trips approx 4-5 times per night, he also has a family history of prc . A few questions , 1, if the mri shows nothing abnormal will he still need a biopsy ? 2, how long after the mri to results? 3, does still  he need the biopsy  to either confirm or rule out anything sinister? 

Hope I haven't rambled on to much, thank you in advanced ;

 

Hannah xx

User
Posted 12 Aug 2018 at 17:59
I would hope that they will offer a biopsy regardless of the MRI result, because of the prostate being hard. What kind of biopsy it is and how long you have to wait for it will be determined by a) where you live and b) what the MRI shows.

The question of how long to results rather depends on which area of the country you live in - it is extremely variable.

When you say there is a family history of PCa, what do you mean? Is there a family history of close male relatives being diagnosed under the age of 60 and / or close relatives diagnosed young with breast or ovarian cancer? If not, the single biggest risk to him is not some male relative having PCa but the fact that he is a man. The vast majority of men have some cancer cells in their prostate - 60% of men in their 60s and 70% of men in their 70s - and we are certainly seeing more men diagnosed in their 30s and 40s.

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

User
Posted 12 Aug 2018 at 18:17

Thank you for your reply, very informative , we are trying not to think too much , but it's hard to escape the big black cloud feeling

User
Posted 12 Aug 2018 at 23:55

MRI’s are useful but unfortunately produce indeterminate results in 40% of cases (or miss altogether) - that info comes from UCLH where they are probably performing the most advanced imaging techniques. From my experience they rate risk of PCa after MRI on a scale of 1 to 5. 5 being the urgent risk category and almost mandatory to have biopsy. It’s interesting that even levels 2 to 4 are all referrals or highly recommended referrrals for biopsy.

What is the use of MRI you might ask. Well from my point of view it’s value is only for targeting visible lesions. if you are able you could ask for a referral to the INNOVATE trial at UCLH where the new bio marker/VERDICT scan protocol is being trialled. Funded by Prostate Cancer UK

Short answered though is get the biopsy. And make it a saturation biopsy.

Fresh

Edited by member 13 Aug 2018 at 01:34  | Reason: Not specified

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

User
Posted 13 Aug 2018 at 03:35
Hello Hannah,

If your man has to have a biopsy, check out the pros and cons of a TRUS biopsy vs a template biopsy (I think the latter is what Fresh means by a saturation biopsy). Many men who have the TRUS first, subsequently have to have a template biopsy, usually under general anaesthetic, for greater accuracy.

I was advised by two friends who had been in exactly that situation to avoid the TRUS altogether, which I did.

Best of luck to you both.

Cheers, John.

User
Posted 13 Aug 2018 at 18:44
My first MRI result was "nothing found" my urologist still went ahead with a TRUS biopsy and that found the Pca. So, do not assume a clear MRI means all is OK, I would advise that a biopsy of any sort is essential. My urologist refused a template biopsy on cost grounds!

By the way my second MRI shows the Pca very well, not sure why, maybe a better technique?

Now awaiting my Brachytherapy treatment.

John

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2 

User
Posted 13 Aug 2018 at 21:25

Thank you all for your responses , it's so kind for you to take time out to offer advice , I 've told my husband, he contacted the specialist nurse , and the nurse will contact him next Friday after the consultants have reviewed his case on Thursday, we will try and push for the template biopsy. 

Feeling so much better after receiving all your advice , Tims going to join the group , we know we can't second guess the diagnosis at this stage, imagination runs wild , I smacked him a couple of times during the night to make sure he was still breathing , this then woke him up and needed the toilet, crazy wife is not what he needs right now , he did see the funny side thankfully ! 

User
Posted 13 Aug 2018 at 22:26
Just to be clear, there are strong personal views on this forum but the state of play 're what kind of biopsy he gets is:

- If the mri shows clear areas of concern, he doesn't need a template biopsy as they know where to target

- if he is offered template biopsy ask whether it is possible to do it with a spinal block rather than general anaesthetic. Some hospitals do and some don't.

- if you live in an area where template biopsy is not allowed unless there has been a TRUS biopsy first, you would have to go out of area

- if you push for template biopsy that was not otherwise going to be offered to you, the hospital target for diagnosing and starting treatment no longer applies ie the clock stops ticking

- in some areas the wait for a template biopsy can be a few months unless you have cover or can afford to pay

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

User
Posted 13 Aug 2018 at 22:41

Thank you, I think if we have some , if limited knowledge at this stage  it at least starts the conversation of choice, if indeed there is one! I have a burning question ,  can a hard prostate be anything else ? The consultant was very dismissive when I asked if it was enlarged, he said his was hard and didn't give any further info on the enlargement front. 

I feel a bit of fraud asking all these questions whist still not having a diagnosis or all clear;

 

User
Posted 13 Aug 2018 at 23:15

Wishing you all the best with your treatment John 

User
Posted 14 Aug 2018 at 01:02
A hard or lumpy prostate at DRE is more concerning than an enlarged prostate. The prostate continues to grow throughout adulthood so lots of men have an enlarged one as they get older.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Aug 2018 at 17:53

Thanks Lynn, I really appreciate the info you are providing; I have a million questions  however it seems futile in asking them until we have the facts 

Hannah xx 

User
Posted 23 Aug 2018 at 15:05

Hi there , 

Just a quick question , will a normal mri give a pi rad score ? 

Thanks

Hannah 

User
Posted 23 Aug 2018 at 16:40
No
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Aug 2018 at 15:04

So at 8.00 am this morning T got a text saying to urgently ring the specialist nurse , who then told him he needed an urgent biposy and could he make to the hospital in the next hour and half , I was at work , left thinking the worse , kids dumped and grandma's. When we got there , something is on the mri with a pi rad of 3 ??? Which seems to mean inconclusive ? trus biposy performed , 14 samples taken. He is in pain and we both a little freaked out by the speed of things. 

 

User
Posted 24 Aug 2018 at 19:06

No point freaking out - a pirad score of 3 should be rather consoling in the circumstances. I can see why the nurse would freak you out but it could be a miscommunication - perhaps they had a cancellation and saw an opportunity to slot you in?

Edited by member 09 Oct 2018 at 21:02  | Reason: Typo

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

User
Posted 24 Aug 2018 at 19:20

Feel a bit embarrassed about my last post, yes I think you are right , all the talk about urgency, cancer , possible treatments made me hit the panic button. Feet back on the ground now. 

User
Posted 09 Oct 2018 at 20:34

Hi, 

So Tim had a Gleason score of 3 and 3 on the trus biopsy , at first we were told it was negative and to have psa levels checked 3 monthly, and basically back to gp care. Then we got a letter asking Tim back to see the consultant who told us his notes have been amended following the mtd , he had his flow rate checked , which was very poor and given medication for this. We also found out that his prostate was originally measured at 20cc by consultants dre, it's actually 47cc from mri measurements. He has just had another psa that has risen to 4.69 . I really don't understand What's going on!  

 

 

User
Posted 09 Oct 2018 at 20:58

Hi Hanna

I just want to begin by saying I totally understand your panic, all your questions which you think are crazy and the cloud of fear you feel is intruding on your life. This was me in March of this year. I had all the same frightening issues when my lovely allan began his journey with a very high PSA level of 18!

He began with a biopsy of 12 and that was followed by a template biopsy where they took 100 samples. He had all the side effects of having a biopsy but came through ok and we managed to stay positive throughout. 

He will be seeing the consultant next monday after a 4 month wait at which point we will see if anything has grown etc. I suppose what I’m trying to say to you is you are allowed to have all the feelings and fears you have experienced over the last few months.. but never feel you are alone as this forum/support is always here and is fantastic! Normal people going through the same and they never tire of giving advice and support. So always ask .... you will get some answers and always a kind and Caring shoulder . Good luck with everything  Pat G ❤️

User
Posted 09 Oct 2018 at 21:02
Sorry you have been distressed, and suffering more worry.

As I said back in August, cases like Tim’s really deserve a template biopsy. I just read this week that between 20-30% of TRUS biopsies are succeeded by template biopsies to get a better picture of the state of the tumour.

I think that would be his best bet going forward, and then take it from there.

There is a school of thought now that says Gleason 3+3=6 should not be referred to as “cancer”, and should be referred to as “a little difficulty down below” or some more medically correct term.

I hope I have reassured you a little bit.

Cheers, John.

User
Posted 09 Oct 2018 at 21:10
He must have been borderline if he was first graded G5 or below and it was only upgraded at the multi-disciplinary team meeting. That is a big prostate so a PSA of 4.69 seems reasonable. Continue with the regular PSA tests - did the consultant give the GP a threshold for re-referral? Is there a plan in place for annual MRI (and repeat biopsy if thought necessary)?

It is important to clarify this - it seems your OH has been put on active surveillance which NICE guidelines stipulate should include 3 monthly PSA with annual DRE and MRI - accept nothing less!

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

User
Posted 09 Oct 2018 at 21:10

Thank you both so much , yes I thought Gleeson 3 and 3 was a great result! But  the psa has jumped in such a short time. I made your point about the template , but they said as they could see some thing on mri a target approach would suffice. We will be really determined for the template biopsy now. 

Really appreciate your time and kind words xxx

User
Posted 09 Oct 2018 at 21:11
PS which medication have they put him on for bladder issues? Some can affect PSA.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Oct 2018 at 21:14

Hi Lynn , thanks for the response , yes they said if this one is higher , they will repeat in a week , and then another biopsy , gp has written a letter to the consultant today. Yes that makes perfect sense about the upgrading, and reassuring to know your thoughts about the enlarged prostrate to the psa levels , he has been given tamsulosin, which seems to be working. 

User
Posted 09 Oct 2018 at 21:16
Template biopsy seems unnecessary at this stage but there is no harm in asking. The issue is, at 43 is he prepared to opt for radical treatment with all the attendant risks if the results were worse? If not, then AS is a good holding position until there are signs that the cancer is developing / progressing.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Oct 2018 at 21:17
The tamsulosin is good news - it doesn't affect PSA readings.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Oct 2018 at 10:15

I am concerned that the psa has jumped in 3 months, if it's the enlarged prostate causing the rise , then I am also concerned how a prostate has doubled in size in that time scale. If the consultants estimate to begin with was off the mark , then surely his psa would of been higher at the first two readings. Again I am sorry for asking all these questions when you guys are dealing with much more serious conditions xx

User
Posted 10 Oct 2018 at 23:14
Unfortunately, when Prostates are sliced in the lab after Prostatectomy, it is occasionally found that the 3 in a Gleason is actually a 4 so yet another uncertainty, as there is with so much of this disease.

An increase in Prostate size which happens to men to varying degrees as they grow older can account for some increase in PSA but this is usually a slow process but may be accelerated by growing tumours. There are so many variables and consultants with the tools that are available to them plus histology are best placed to give an opinion on a specific case . That being so, perhaps is is best not to speculate but seek more precise opinions from consultants, particularly when what they say may appear to be contradictory.

Barry
User
Posted 11 Oct 2018 at 10:08

Thank you Barry , wise words indeed xx

User
Posted 24 Jan 2019 at 18:53

hi guys , we still here lurking in the background, hope you amazing people are all well .

So from psa 2.9 in August we now find ourselves at 5.2, psa tests every 6 weeks have seen slight increases  every time, we have said we really want the template biopsy now , although still low in psa terms , are we right to be concerned that a Gleeson score of 6 previously, that some further action is warranted? 

Feeling deflated , probably phycological as hitting a whole new number 😥😥 advice would be very much appreciated xx

User
Posted 25 Jan 2019 at 00:08
This situation with attendant concern has been going on for too long and I would push for a template biopsy in the circumstances.
Barry
User
Posted 25 Jan 2019 at 00:24

Originally Posted by: Online Community Member
Template biopsy seems unnecessary at this stage but there is no harm in asking. The issue is, at 43 is he prepared to opt for radical treatment with all the attendant risks if the results were worse? If not, then AS is a good holding position until there are signs that the cancer is developing / progressing.

It is not common for a Gleason to change from one thing to another (ie G3+3 becoming a G4+4) but it is possible that the G3+3 is very active and / or that there are other clusters elsewhere in his prostate that are a higher grade. 

I stick with my previous comment though. If he is not yet ready to have radical treatment then it seems pointless having a template biopsy. If on the other hand, he is thinking "I am only 43, this cancer needs to be dealt with now" then he can go straight for the radical surgery / radical RT option. I am not sure what a template biopsy adds either way. 

Anecdotally, it often seems the very young men diagnosed end up having a more aggressive, more determined cancer. I think if this was my brother or friend, I would be pushing for more detailed scans and radical treatment.

 

I can't remember whether you have completed your family yet? If not, time to deal with that aspect might be the only really persuasive argument for delaying treatment now?

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

User
Posted 25 Jan 2019 at 13:13

With your age and family history i think that a template biopsy is not an unreasonable request.

My template biopsy put my initial stage at t2a...it was infact a 2tc - in both sides of my prostate - on pathology. 

All the best. 

 

Edited by member 25 Jan 2019 at 16:09  | Reason: Not specified

User
Posted 25 Jan 2019 at 17:42
Surely, the logical approach is to get the fullest information on where you are (rather than speculate), then look at all options and then decide which of the options including just further monitoring you wish to go with? Although scans have improved, they do not always show or show the full extent of tumours and more definitive conclusions can be obtained by a template biopsy.
Barry
 
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