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Pirads level 5

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User
Posted 22 Dec 2019 at 16:15

Hi 

I’m new to the forum. I’ve just had an MRI scan and it’s showing a level 5 Pirads. So it’s a biopsy next month. The MRI scan is showing a small abnormal mass. However I’ve no symptoms. PSA IS 7.4. 
I’ve always been against a biopsy as to me the chance of complicit too high. Infection etc etc. I’m a bit of a it’s it’s not a problem then leave alone. 
Any advice welcome. 

User
Posted 22 Dec 2019 at 20:43

Hi Ian,

You'd be taking a big risk if you don't have the biopsy.   The NHS must do going on for 100,000 a year and the vast majority just have the standard problems that aren't long lasting.   Prostate Cancer at psa 7.4 is usually curable, but as time goes on the probability of it being incurable increase.

The biopsy is the key to your treatment, I'd recommend you get on with it and don't delay.

All the best
Peter

 

 

User
Posted 23 Dec 2019 at 08:40
I totally understand your worry about the possible complications associated with biopsies. It worried me too because at that time I had a rising PSA and a lesion on my Prostate but the consultant did not know if it was cancer. Being optimistic I thought it was not cancer and with all the talk about active surveillance, the worry about biopsy complications was all I could think about. Sadly there are risks with all forms of medical tests and treatments so you must way up the benefits and risks. When I found out my cancer was 4+4 I was shocked but glad that they had found it early. Looking back the worry about biopsies is now put into perspective. This forum has some great advice and the hospital nursing team are extremely helpful, maybe you should phone them and talk everything over.
User
Posted 23 Dec 2019 at 11:00

I had both a TRUS and subsequently a template biopsy. The TRUS was uncomfortable, certainly, but in terms of actual pain it's on a par with having a filling at the dentist. The template biopsy was done under general anaesthetic, so no pain.

I've been on this forum for a while now, and I honestly can't recall anyone experiencing urethral damage as a result of a biopsy.

 

Edited by member 23 Dec 2019 at 11:02  | Reason: Not specified

User
Posted 24 Dec 2019 at 10:09
As I recall, the biopsy was unpleasant, but not (to my mind) as unpleasant as the MRI, and a sight quicker! Yes, they give you 2 sorts of penicillin to take for 3 days after, because your bowel has been pierced by the biopsy needle, but I was told thet few people get an infection if they take the tablets. The blood in the urine is a bit startling at first, but if you are expecting it, it's not a problem. And once the biopsy is done, you will know for sure if you have cancer or not. Then you can decide what to do about it, or breathe a big sigh of relief.

My recovery continues steadily (6 weeks after the end of radiotherapy). The 'messy' side effects (blood in urine, blood and mucous from the rectum) have gone, and the main problem now is fatigue and lack of stamina. But that will get better if I work (gently!) at it. First follow-up appointment in early January, and I am quietly hopeful.

In the meantime, today is Christmas Eve. PCa or not, let's all try to have a good time.

Hermit.

User
Posted 24 Dec 2019 at 10:49
Sorry to have to contradict you Hermit but a Biopsy does not always show for sure whether you have cancer or not. It shows that nothing has been seen in the cores extracted or in the case of a template any tumour not seen is less than about 5mm. It's rare but we have had men on this forum who have had to have up to 3 biopsies before suspected cancer has been found. This is not intended to scare anybody but it has to be told as it is.
Barry
User
Posted 24 Dec 2019 at 15:47

Hi Ian,

Think of the bigger picture. The biopsy is like someone nipping your backside.  Treatment will extend your life.  If there's nothing wrong you're a lucky guy.

You could ask for a 24 pin biopsy under general anaesthetic.  You then go to sleep and wake up done although it's a longer process.  After an MRI they should be able to target it better with 12.  All the best, Peter

User
Posted 31 Dec 2019 at 09:13
There are no options during tests, Ian. It's a standard set of diagnostic procedures: an MRI scan, then a biopsy, then (if the biopsy finds cancer) a bone scan to check for spread outside the prostate. Only after all the tests are complete do the results go to MDT where experts in all the appropriate fields discuss your case and recommend one or more treatments. You are going through the absolutely standard test process, and there are no options to discuss until it's all complete.

Best wishes,

Chris

User
Posted 31 Dec 2019 at 12:42
A thought here is if Ian is not prepared to even have a relatively simple and frequently performed procedure such as a biopsy, logically he would be far more opposed to having a Prostatectomy which carries a greater risk for severe side effects if cancer is found. That would probably leave RT and HT along with other systemic treatments for consideration which he might also find off-putting.

His choice!

Barry
User
Posted 31 Dec 2019 at 13:11

Originally Posted by: Online Community Member
Hopefully one day men will be offered a choline PET/CT scan instead of the old fashioned needle biopsy ( wishful thinking I know).

They don't fulfill the same diagnostic role.

User
Posted 31 Dec 2019 at 16:35

Hi Ian, I have been following this forum since my husbands diagnosis last September and today was the first time I have written anything but when I read your dilemma  I felt I had to.  I am sure anyone on this forum and who are on this journey all felt like you do, anger, frustration and total disbelief that this is happening. Tbh Keith was a real mess, together with myself although I did try to hide it, but as he has gone on this journey and eventually we met his Oncologist who had all the results and went through everything with us, Keith really felt he was in good hands and has put his faith in this Consultant and moves forward each day. I hope you have someone to talk to as you will need support.  From what I’ve read on this forum, the Specialist Nurses are brilliant.

Keith and I wish you all the best for your future.

Ange

User
Posted 02 Jan 2020 at 00:54

Ian,

You will be aware that the NHS is struggling due to shortage of clinicians. This means that they do not have the time to discuss in detail with each man after he has an MRI why they feel it shows possible cancer and the need for a biopsy to try to confirm this. So you then progress to biopsy with a bone scan also done where considered appropriate. Where cancer has not been found in a biopsy where strongly suspected, on occasion men are asked to have another biopsy, perhaps a Template one, When the MRI, and bone scan (where done) along with biopsy and histology are all available, the case of an individual is considered with others at a Multi Disciplinary Meeting. The patient is given his diagnosis and where cancer has been found told his options to dealt with it. The type, extent and positioning of cancer will be some of the factors for these choices. In some circumstances a recommendation may be made for a particular form of treatment but this is often left to the patient to decide as there are pros and cons for each type of treatment including after effects. These are all detailed in the excellent 'Tool Kit' on this site. At this point and where there is doubt or you just wish to obtain another opinion before adopting a particular form of treatment (which includes doing nothing but just being monitored until treatment is advisable, ie Active Surveillance), you can do so. But I don't see any advantage of getting a second opinion until this point. It should be noted that sometimes a biopsy is done prior to an MRI, This is gradually changing as the reasons for doing the MRI before biopsy outweigh doing it the other way round.

To put it frankly, hospital Consultant's time is at a premium so they may not give detailed explanations and reasoning before and between each scan/test, of which the technicalities would be lost on most patients anyway.

Another thing to bear in mind is that often the administration is poor in many hospitals but the quality of treatment overall is very good.  Also, don't assume that because your clinician is someone of few words that he/she is not highly competent.  Ultimately, early diagnosis and appropriate treatment affords a better chance of beating PCa or at least significantly slowing it's advance.

Well Ian, you are aware how the system works and that you are not being treated differently to others, so it's really down to you to consider whether indeed this is really your objection or if you won't have treatment regardless.  It could be like a situation I have with my wife now.  She says she won't fly any more because of all the waiting at airports but when pressed agrees it's really more because she is afraid of flying now having previously enjoyed this for many years.

I wish you well.

Edited by member 02 Jan 2020 at 01:48  | Reason: Not specified

Barry
User
Posted 08 Jan 2020 at 23:06

Good luck Ian. It'll be a little uncomfortable and inconvenient, but that's all. If you're lucky they won't find anything. 

Mine was TRUS, I had to lie on my side whilst the doc shoved every bit of hospital equipment he could find up my arse, meanwhile a nurse sat on the other side i.e. facing me making small talk, about what I had for breakfast, to try and distract me from what the doc was doing. Poor little me with my aspergers; I hate small talk, I just wanted to count how many small yellow tiles were on the wall behind her.

Keep us updated. 

Dave

User
Posted 08 Jan 2020 at 23:11

Wishing you all the best for tomorrow Ian.

 

Ange

User
Posted 09 Jan 2020 at 12:01

Delighted to hear it, Ian. Good decision. It sounds too as if you've established a level of trust with the people who'll be treating you, and that's absolutely essential.

Very best wishes,

Chris

Edited by member 09 Jan 2020 at 12:04  | Reason: Not specified

User
Posted 09 Jan 2020 at 13:13

Difficult decision to have made.  So pleased to hear you went ahead and that the Medical Staff were excellent.  My husband Keith can’t fault the NHS and all the Medical Team he has encountered during his journey so far.  He keeps saying it is what it is and you have to make these difficult decisions and move forward.

We hope you receive good news in 2/3 weeks time.

As you say Ian, onwards and upwards.

Best wishes

Ange

User
Posted 10 Jan 2020 at 22:41

If the TRUS biopsy doesn’t show cancer, they’ll sometimes ask you to have a much more thorough template biopsy to get more detailed information. That’s what happened to me, but it’s not that common an occurrence. A template biopsy is done under general anaesthetic, so you won’t know a thing about it. It just leaves you with a rather spectacular bruise on your perineum.

The normal way forward now, if the biopsy finds cancer cells (which one would expect it to given the scan results) would be a bone scan to check for mets (very unlikely that it has spread with your low PSA, but it’s a standard test) and then all the information would go to MDT to discuss the results and what treatments are recommended. They may come back with a recommendation for a specific treatment (that’s what happened in my case) or you may be offered a choice, which would generally be between surgery and radiation. If given a choice, you’d have a meeting with a urologist to talk about surgery, and an oncologist to talk about non-surgical options. It would be up to you then to go away and decide what your preferred option was.

The important thing to remember is that when caught at an early stage, prostate cancer is a relatively easily treatable condition, not a death sentence.

Best wishes,

Chris

Edited by member 10 Jan 2020 at 22:49  | Reason: Not specified

User
Posted 13 Jan 2020 at 17:14
Standard procedure, without doubt. Two to three weeks wait between having the biopsy and getting the results is absolutely normal.

Best wishes,

Chris

User
Posted 24 Jan 2020 at 18:11

As someone who has just finished 18 months Hormone Therapy, my advice would be try Radiotherapy first. The side effects of HT are life changing, that’s a proven fact and is what I’m experiencing.
IMRT Radiotherapy is both very accurate and effective, it’s what I had and it involves getting key points on your body tattooed and the RT is targeted and aligned with recent CT scans, your tattoos and live images.

Some people would advise the Watchful Waiting policy, but personally I would not want to live like that. Some CCG’s might not give you an alternative to WW as there are schools of thought that some cancers are “over treated”, like in your case, where it is not advanced, as Prostate Cancer is slow growing 

User
Posted 24 Jan 2020 at 22:09
Agree with what Dave has said. You don't have to rush into a decision but do have some grade 4 cells so will need regular monitoring if you go with AS. Although the cancer seems to be well contained there is no indication of how much of it there is, apart from it being in a small area. It is likely that unless there are other contraindications it is likely that you will be offered surgery or radiation as well as AS. However, you might be a suitable candidate for HIFU which has milder effects but is slightly more likely that you may need either a form of radiation or surgery at some time in the future - certainly worth asking about.
Barry
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User
Posted 22 Dec 2019 at 20:43

Hi Ian,

You'd be taking a big risk if you don't have the biopsy.   The NHS must do going on for 100,000 a year and the vast majority just have the standard problems that aren't long lasting.   Prostate Cancer at psa 7.4 is usually curable, but as time goes on the probability of it being incurable increase.

The biopsy is the key to your treatment, I'd recommend you get on with it and don't delay.

All the best
Peter

 

 

User
Posted 22 Dec 2019 at 20:54

Ask if you can have a local anesthetic transperineal (LATP) biopsy.
Having said that, either your hospital does them, or it does TRUS biopsies - you almost certainly won't have a choice. Like Peter said, it's essential you have one to prove if you have prostate cancer or not, and what type.

User
Posted 22 Dec 2019 at 20:57

Having no symptoms is absolutely typical for localised prostate cancer, and when it’s still localised is when it’s curable. Having a biopsy and looking at the cells under a microscope is the only way to confirm that you do have cancer and, if so, what type and how aggressive it is. You are literally putting your life on the line if you don’t have a biopsy at this stage in the game. For the overwhelming majority of men, a biopsy is free from complications; the only side-effects that normally result are blood in your urine for anything up to a couple of weeks, and in semen for a couple of months.

Best wishes,

Chris

Edited by member 22 Dec 2019 at 21:21  | Reason: Not specified

User
Posted 22 Dec 2019 at 21:21

Have the Biopsy. Hopefully Trans rather than Trus.

User
Posted 22 Dec 2019 at 21:44

I was pirad 5 and had a trus biopsy.  Didn’t have a choice which type of biopsy.  Had no bother with the trus.

Ulsterman

User
Posted 22 Dec 2019 at 23:40
I’ve had both and it’s no big deal. They are uncomfortable but you are gambling with you life if you don’t have it done. My trus biopsy found nothing but the trans perineal biopsy found a single core with 4+4 cancer. My PSA was also 7.4. My advice would be don’t delay getting the biopsy. Good luck.
User
Posted 23 Dec 2019 at 00:11
I think sometimes, knowledge is unhelpful. John was told he needed a biopsy, he didn't read anything about it, he didn't ask any questions; just went to the hospital, had the biopsy and then went to work as usual. No blood, no pink urine, no infection, no problem, no worries because he didn't know other people worried about it.

On the other hand, if your approach is already that biopsies are pointless and to be avoided, you should think carefully about what you would do if you were diagnosed with cancer ... if there is a good chance that you would refuse treatment then yes, save the NHS some money and don't bother having the biopsy. For the very small proportion of people who would refuse cancer treatment regardless of their staging, it is perhaps better to just not know until they are at the end of life stage.

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

User
Posted 23 Dec 2019 at 00:13
PS hardly anyone has any symptoms of prostate cancer until it is too late.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Dec 2019 at 03:16
It’s 2am and once again my sleep pattern is disturbed with my mind racing with what ifs ? You know I’ve read the replies and I thank everyone for taking the time to do so.

To put some perspective I had the scan then I received the a letter to go for a biopsy.

No explanation why I had to have the biopsy was given and I did not receive any result about the MRI.

The biopsy will be at Gartnavel Hospital in Glasgow.

I then had to chase up an explanation and after I made enquiring eventually made contact ether a specialist nurse She was very helpful and explained the procedure.

So the complications in my life are that I’m on blood thinning tablets as I’ve been diagnosed with Atrial Fibrillation. I had to find out if I should stop taking the blood thinning tablets and for how long before the biopsy.

The appointment letter made no reference to this.

My consultation which basically lasted about 5 minutes tops before the MRI went along the lines of. Oh you’ve been referred to us for a raised PSA. 7.4. What health conditions are you in , I explained about the Afib. Oh ok you’ll get an MRI 4-6 weeks good bye.

Then the letter for the biopsy no explanation given.

After speaking to the specialist nurse I found out that the area affected was very difficult for the scan to detect due to its proximity to the urethra.

So bearing in mind that a } I’ve had to find this information my self. b ) I’ve been given no explanation about why and how this will interact with me coming off the blood thinning tablets.

With regards to the atrial fibrillation just a few days ago this kicked in and what happens is my heart rate spikes for no reason. It’s raises itself to around 150 beats per minute for no reason and thus can continue for several hours sometime in the past it’s gone to 220 per minute whilst I’m resting. The blood thinning tablets prevent the blood from clotting obviously and the risk of stroke.

I’ve bent given no direction on this and what to do if I stopped the tablets which I should for 48 hours before the biopsy.

So at this point my continued my treatment is rock bottoms down damage the .

What if they carry out the biopsy and damage the urethra and find nothing of concern but they leave me with urinary problems.

Yes I know they may mind PC and it should be treated but what if they don’t and they damage what is otherwise healthy area.

I totally get the you must get the biopsy but I don’t get the but there is a risk.

Probably because so far there has been no medical risk assessment given or offered.

Hope this all makes some kind of sense.

To complicate matters my dad had two serious strokes and prostate cancer. The cancer was a secondary matter in his eventual death.

User
Posted 23 Dec 2019 at 08:40
I totally understand your worry about the possible complications associated with biopsies. It worried me too because at that time I had a rising PSA and a lesion on my Prostate but the consultant did not know if it was cancer. Being optimistic I thought it was not cancer and with all the talk about active surveillance, the worry about biopsy complications was all I could think about. Sadly there are risks with all forms of medical tests and treatments so you must way up the benefits and risks. When I found out my cancer was 4+4 I was shocked but glad that they had found it early. Looking back the worry about biopsies is now put into perspective. This forum has some great advice and the hospital nursing team are extremely helpful, maybe you should phone them and talk everything over.
User
Posted 23 Dec 2019 at 11:00

I had both a TRUS and subsequently a template biopsy. The TRUS was uncomfortable, certainly, but in terms of actual pain it's on a par with having a filling at the dentist. The template biopsy was done under general anaesthetic, so no pain.

I've been on this forum for a while now, and I honestly can't recall anyone experiencing urethral damage as a result of a biopsy.

 

Edited by member 23 Dec 2019 at 11:02  | Reason: Not specified

User
Posted 24 Dec 2019 at 10:09
As I recall, the biopsy was unpleasant, but not (to my mind) as unpleasant as the MRI, and a sight quicker! Yes, they give you 2 sorts of penicillin to take for 3 days after, because your bowel has been pierced by the biopsy needle, but I was told thet few people get an infection if they take the tablets. The blood in the urine is a bit startling at first, but if you are expecting it, it's not a problem. And once the biopsy is done, you will know for sure if you have cancer or not. Then you can decide what to do about it, or breathe a big sigh of relief.

My recovery continues steadily (6 weeks after the end of radiotherapy). The 'messy' side effects (blood in urine, blood and mucous from the rectum) have gone, and the main problem now is fatigue and lack of stamina. But that will get better if I work (gently!) at it. First follow-up appointment in early January, and I am quietly hopeful.

In the meantime, today is Christmas Eve. PCa or not, let's all try to have a good time.

Hermit.

User
Posted 24 Dec 2019 at 10:49
Sorry to have to contradict you Hermit but a Biopsy does not always show for sure whether you have cancer or not. It shows that nothing has been seen in the cores extracted or in the case of a template any tumour not seen is less than about 5mm. It's rare but we have had men on this forum who have had to have up to 3 biopsies before suspected cancer has been found. This is not intended to scare anybody but it has to be told as it is.
Barry
User
Posted 24 Dec 2019 at 11:06
I stand corrected, Barry!
User
Posted 24 Dec 2019 at 15:47

Hi Ian,

Think of the bigger picture. The biopsy is like someone nipping your backside.  Treatment will extend your life.  If there's nothing wrong you're a lucky guy.

You could ask for a 24 pin biopsy under general anaesthetic.  You then go to sleep and wake up done although it's a longer process.  After an MRI they should be able to target it better with 12.  All the best, Peter

User
Posted 30 Dec 2019 at 22:25

So my biopsy is due on 9 th January. I’ve read many posts on here and I salute the bravery of all that have gone through the many routes of prostate cancer. However I’m staying with what’s not showing any problems shall remain untouched. I’ve no confidence in the medical staff in my area and I’ve no intent in letting them open up and leave me in a much worse place. My reason ? You can live with PC totally unaware and without the need for medical intervention. I’m taking my chance. 

Edited by member 31 Dec 2019 at 05:31  | Reason: Not specified

User
Posted 30 Dec 2019 at 23:01
Yes, many men do indeed live with untreated prostate cancer, but once it spreads from the prostate into the bones and other organs, it’s then incurable and WILL kill you, and death from advanced prostate cancer is certainly not quick or painless. Prostate cancer is the second biggest cancer killer in men, behind only lung cancer.

When the cancer is confined to the prostate it’s treatable with an excellent chance of a complete cure. You’re honestly going to throw away a high probability of a cure because of an extremely low probability of significant complications from a biopsy?

I wish you all the best, but I think you’re making a catastrophic error of judgment.

Chris

User
Posted 30 Dec 2019 at 23:03
Seems a bit odd to put the NHS through the cost of a biopsy then?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Dec 2019 at 23:06

I’m not having the biopsy so no cost. 

User
Posted 30 Dec 2019 at 23:11

True Chris but their management of my treatment so far has been appalling. I’ve no confidence that will improve. I know it sound irrational I accept that but to give me no explanation or appointment to explain my MIR result and have an appointment clerk give me advice to come off blood thinning medication with no counter measure if my heart goes into a sharp heart rise I’m talking up to 170 beats per minute with the high risk of stroke for 4 days with no advice to counter act this is just unacceptable. 

User
Posted 30 Dec 2019 at 23:18

Have you spoken to your GP about your concerns?

One final point: you say that you have no faith in the "medical technicians" in your area. You are aware that biopsies are carried out by experienced surgeons, not medical technicians?

Best wishes,

Chris

 

Edited by member 30 Dec 2019 at 23:30  | Reason: Not specified

User
Posted 31 Dec 2019 at 00:39

Originally Posted by: Online Community Member

I’m not having the biopsy so no cost. 

My apologies; the way you worded your post makes it look like you are having the biopsy on the 9th? 

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

User
Posted 31 Dec 2019 at 05:36

Absolutely correct I’ve changed my predictive text to medical staff. Yeah it will be surgeons However the very same surgeons have taken no time to explain to me my options. My consultation lasted 3 mins to send me for an MRI. Slightly elevated PSA refereed by GP he said 4/6 week wait , goodbye he said. 

User
Posted 31 Dec 2019 at 09:13
There are no options during tests, Ian. It's a standard set of diagnostic procedures: an MRI scan, then a biopsy, then (if the biopsy finds cancer) a bone scan to check for spread outside the prostate. Only after all the tests are complete do the results go to MDT where experts in all the appropriate fields discuss your case and recommend one or more treatments. You are going through the absolutely standard test process, and there are no options to discuss until it's all complete.

Best wishes,

Chris

User
Posted 31 Dec 2019 at 10:44
I think Ian is probably right not to go ahead with further diagnostics at this point and we should cut him some slack. Seems to me that he is so distrustful of the medics that it could only end badly, anyway.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 31 Dec 2019 at 11:28
I just hate to see someone throwing their life away, Lyn. No matter how badly a biopsy goes it’s nothing compared to dying from advanced prostate cancer 😢.

Best wishes,

Chris

User
Posted 31 Dec 2019 at 12:42
A thought here is if Ian is not prepared to even have a relatively simple and frequently performed procedure such as a biopsy, logically he would be far more opposed to having a Prostatectomy which carries a greater risk for severe side effects if cancer is found. That would probably leave RT and HT along with other systemic treatments for consideration which he might also find off-putting.

His choice!

Barry
User
Posted 31 Dec 2019 at 13:03

Hopefully one day men will be offered a choline PET/CT or PSMA scan before the old fashioned needle biopsy ( wishful thinking I know).

Roy

Edited by member 31 Dec 2019 at 13:08  | Reason: Not specified

User
Posted 31 Dec 2019 at 13:11

Originally Posted by: Online Community Member
Hopefully one day men will be offered a choline PET/CT scan instead of the old fashioned needle biopsy ( wishful thinking I know).

They don't fulfill the same diagnostic role.

User
Posted 31 Dec 2019 at 13:26

Originally Posted by: Online Community Member
A thought here is if Ian is not prepared to even have a relatively simple and frequently performed procedure such as a biopsy, logically he would be far more opposed to having a Prostatectomy which carries a greater risk for severe side effects if cancer is found.That would probably leave RT and HT along with other systemic treatments for consideration which he might also find off-putting.

A long shot, but if he gets a clear bone scan (which is pretty non-invasive except a single injection in the arm), I wonder if they might be prepared to just do HT+EBRT on him? The gleason score, and cancer mapping in the prostate don't matter for this treatment. They could treat it as high risk (his PSA isn't, but staging and gleason are unknown and therefore would probably have to be treated as high risk, and the PIRADs hints at it), which would mean treating seminal vesicles and pelvic lymph nodes too, which ups the risk of radiation side effects to the rectum a bit.

OTOH, I wouldn't be surprised if they refuse RT without a biopsy. RT is the expensive treatment option, and doing it without being 100% certain it's prostate cancer in the first place might not wash. (They wouldn't treat me when they were only 90% certain, which is why I had to have additional diagnostic tests, although that was because they regarded 90% certain as not high enough to justify the side effects, it wasn't due to the cost.)

User
Posted 31 Dec 2019 at 13:46

Hi Ian, I understand your concerns about stopping your medication for four days.  My brother has been taking blood thinning medication, following a stroke, for some years now and in February this year he was diagnosed with colon cancer and required an operation and there were concerns because of his blood thinning tablets having to be stopped. His Consultant changed his medication to injections and he had the operation and stays on the injections as he now requires a liver operation as the cancer has spread. Maybe a discussion with your GP could help with your concerns.  With regards to the biopsy, my husband was advised to have this following his MRI on his prostate, he had not had any symptoms and was very concerned about having the biopsy, lost a lot of sleep worrying about it, but decided to go ahead.  He said it was uncomfortable and yes he worried about having problems but took the prescribed antibiotics and no side effects at all.  We are all thankful that he did as he was diagnosed with cancer, Gleason score 3+4 and the bone scan revealed a lesion on his right hip which he is now having 6 sessions of chemotherapy (docetaxel).  Fingers crossed that this will give him many more years. Ange

User
Posted 31 Dec 2019 at 14:53

If they had the common decency to explain the result of my MRI either over the phone or by appointment then I’d have more trust in the next step. They didn’t they just sent a letter to forward me into the next stage of a biopsy. The appoint clerk advised I stop the blood thinning medication 48 hours before. 
I live on the west coast of Scotland and our health service is in crisis. 
Your  your replies are so helpful and I can’t thank you enough that you’ve taken time out to reply. So much construction valid information of which I agree with it all. 
But my issue is not what I’m hearing on here it’s what I’m not hearing from a prospective surgeon as to why they want to do this. Yes I know in medical terms the biopsy should be pain free that’s not my concern it’s the lack of information as to why I need it. 
I think I should stop posting on here because I’m just not making sense. I’m probably more fearful of what they find. Tbh one reply nailed it in that I wouldn’t want any further treatment if they do find cancer. Sorry for wasting your time folks but to be truthful the who idea has spooked me and I’m not good at dealing with this. If you knew me I’m one of life’s problem solvers  I give out constructive advice but I just don’t deal with my own issues. 
Thanks again and good luck with your journeys from here. 

User
Posted 31 Dec 2019 at 14:55

Such a brave man , Ange. 

User
Posted 31 Dec 2019 at 15:03
I hope you do go ahead with the biopsy next month. It should tell whether you have cancer or not, and if so, what grade.

Your surgeon and anaesthetist will be fully up to speed with your medical condition when you go for your pre-operative tests, and they won’t put you at risk if they feel you are not OK with the biopsy procedure.

Once you have the facts you can weigh up what treatment (if any) you want to undergo.

Best of luck for 2020!

Cheers, John.

User
Posted 31 Dec 2019 at 15:22
The reason the surgeon wants a biopsy is because the MRI scan cannot definitively say if you have or have not got cancer in the prostate. I’ve had 3 MRI scans over the past three years and the only thing it told the surgeon was that I had a lesion / abnormality. This lesion did not increase in size and at one point when my PSA started to decrease It looked like I was in the clear. It was only after a second biopsy that they found a single core with 4+4 cancer.
User
Posted 31 Dec 2019 at 15:22

Originally Posted by: Online Community Member

A long shot, but if he gets a clear bone scan (which is pretty non-invasive except a single injection in the arm), I wonder if they might be prepared to just do HT+EBRT on him? The gleason score, and cancer mapping in the prostate don't matter for this treatment. They could treat it as high risk (his PSA isn't, but staging and gleason are unknown and therefore would probably have to be treated as high risk, and the PIRADs hints at it), which would mean treating seminal vesicles and pelvic lymph nodes too, which ups the risk of radiation side effects to the rectum a bit.

OTOH, I wouldn't be surprised if they refuse RT without a biopsy. RT is the expensive treatment option, and doing it without being 100% certain it's prostate cancer in the first place might not wash. (They wouldn't treat me when they were only 90% certain, which is why I had to have additional diagnostic tests, although that was because they regarded 90% certain as not high enough to justify the side effects, it wasn't due to the cost.)

 

Honestly, would you be prepared to treat him on this basis? I wouldn't. If Ian is this angry about what seems to be a fairly normal diagnostic process, can you imagine what it would be like if treatment caused side effects? Claims, counter-claims, PALS, threats of being sued, 'no-one told me there might be side effects', 'no-one told me that not having a biopsy might mean the RT was targeted to the wrong area', etc, etc.  

 

Ian, I hope that with a little time, your urologist will either agree to see you and explain in more detailed or you will find another urologist that you can trust more. Or you could phone the number at the top of this website and order the toolkit which explains everything you need to know. 

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

User
Posted 31 Dec 2019 at 15:47

Originally Posted by: Online Community Member

If they had the common decency to explain the result of my MRI either over the phone or by appointment then I’d have more trust in the next step. They didn’t they just sent a letter to forward me into the next stage of a biopsy.



This is perfectly normal. You aren’t being singled out for special treatment. They do all the diagnostic tests and THEN you have an appointment to discuss the results.

Quote:

But my issue is not what I’m hearing on here it’s what I’m not hearing from a prospective surgeon as to why they want to do this. Yes I know in medical terms the biopsy should be pain free that’s not my concern it’s the lack of information as to why I need it. 

Why they want to do it is because looking at cells from your prostate under a microscope is the only way to know what type of cancer it is, and that determines what the optimal treatment is. A scan can see a tumour, but it can’t tell what type of cancer cells are in the tumour.

Quote:
I think I should stop posting on here because I’m just not making sense. I’m probably more fearful of what they find. Tbh one reply nailed it in that I wouldn’t want any further treatment if they do find cancer. Sorry for wasting your time folks but to be truthful the who idea has spooked me and I’m not good at dealing with this. If you knew me I’m one of life’s problem solvers  I give out constructive advice but I just don’t deal with my own issues. 
Thanks again and good luck with your journeys from here. 


Forgive me, but I find the idea that you’re willing to risk dying from cancer when you have what is in all likelihood a perfectly treatable condition to be truly bizarre, but it’s your life to throw away if you wish. I wish you all the best for the future.

 

Chris

 

User
Posted 31 Dec 2019 at 16:35

Hi Ian, I have been following this forum since my husbands diagnosis last September and today was the first time I have written anything but when I read your dilemma  I felt I had to.  I am sure anyone on this forum and who are on this journey all felt like you do, anger, frustration and total disbelief that this is happening. Tbh Keith was a real mess, together with myself although I did try to hide it, but as he has gone on this journey and eventually we met his Oncologist who had all the results and went through everything with us, Keith really felt he was in good hands and has put his faith in this Consultant and moves forward each day. I hope you have someone to talk to as you will need support.  From what I’ve read on this forum, the Specialist Nurses are brilliant.

Keith and I wish you all the best for your future.

Ange

User
Posted 31 Dec 2019 at 19:23

Originally Posted by: Online Community Member

Hi Ian, I have been following this forum since my husbands diagnosis last September and today was the first time I have written anything but when I read your dilemma  I felt I had to.  I am sure anyone on this forum and who are on this journey all felt like you do, anger, frustration and total disbelief that this is happening. Tbh Keith was a real mess, together with myself although I did try to hide it, but as he has gone on this journey and eventually we met his Oncologist who had all the results and went through everything with us, Keith really felt he was in good hands and has put his faith in this Consultant and moves forward each day. I hope you have someone to talk to as you will need support.  From what I’ve read on this forum, the Specialist Nurses are brilliant.

Keith and I wish you all the best for your future.

Ange

 

thank you Ange for such a lovely reply. 

User
Posted 31 Dec 2019 at 21:04

Hi Andy

sorry i think you may have read my post prior to my changing the wording from instead to before, as I realised it could have been misleading. What I was trying to say was that the choline or PSMA scan could reveal the cancer if the necessary receptors are present and if so a biopsy could then be performed to gauge the Gleason score. Sorry if I confused the situation.

all the best

Roy

User
Posted 02 Jan 2020 at 00:54

Ian,

You will be aware that the NHS is struggling due to shortage of clinicians. This means that they do not have the time to discuss in detail with each man after he has an MRI why they feel it shows possible cancer and the need for a biopsy to try to confirm this. So you then progress to biopsy with a bone scan also done where considered appropriate. Where cancer has not been found in a biopsy where strongly suspected, on occasion men are asked to have another biopsy, perhaps a Template one, When the MRI, and bone scan (where done) along with biopsy and histology are all available, the case of an individual is considered with others at a Multi Disciplinary Meeting. The patient is given his diagnosis and where cancer has been found told his options to dealt with it. The type, extent and positioning of cancer will be some of the factors for these choices. In some circumstances a recommendation may be made for a particular form of treatment but this is often left to the patient to decide as there are pros and cons for each type of treatment including after effects. These are all detailed in the excellent 'Tool Kit' on this site. At this point and where there is doubt or you just wish to obtain another opinion before adopting a particular form of treatment (which includes doing nothing but just being monitored until treatment is advisable, ie Active Surveillance), you can do so. But I don't see any advantage of getting a second opinion until this point. It should be noted that sometimes a biopsy is done prior to an MRI, This is gradually changing as the reasons for doing the MRI before biopsy outweigh doing it the other way round.

To put it frankly, hospital Consultant's time is at a premium so they may not give detailed explanations and reasoning before and between each scan/test, of which the technicalities would be lost on most patients anyway.

Another thing to bear in mind is that often the administration is poor in many hospitals but the quality of treatment overall is very good.  Also, don't assume that because your clinician is someone of few words that he/she is not highly competent.  Ultimately, early diagnosis and appropriate treatment affords a better chance of beating PCa or at least significantly slowing it's advance.

Well Ian, you are aware how the system works and that you are not being treated differently to others, so it's really down to you to consider whether indeed this is really your objection or if you won't have treatment regardless.  It could be like a situation I have with my wife now.  She says she won't fly any more because of all the waiting at airports but when pressed agrees it's really more because she is afraid of flying now having previously enjoyed this for many years.

I wish you well.

Edited by member 02 Jan 2020 at 01:48  | Reason: Not specified

Barry
User
Posted 08 Jan 2020 at 21:04

Tomorrow is my biopsy appointment. It would appear that’d it’s a Professor at the hospital that is doing the biopsy. Is this normal that a Professor is going the biopsy as I thought it was the specialist nurse that would do the procedure ?

Edited by member 08 Jan 2020 at 23:22  | Reason: Not specified

User
Posted 08 Jan 2020 at 21:09
Nurses wouldn't usually be allowed to undertake surgical procedures. For many men, the biopsy is the only time they ever meet their urologist!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Jan 2020 at 21:09

I thought you weren’t having a biopsy, Ian?

As I mentioned in an earlier post, biopsies are carried out by urological surgeons. I’ve never heard of a nurse performing a biopsy.

The forum rules prohibit naming medical staff, by the way. It would be advisable to edit your post and remove the name.

Best wishes,

Chris

Edited by member 08 Jan 2020 at 21:11  | Reason: Not specified

User
Posted 08 Jan 2020 at 23:06

Good luck Ian. It'll be a little uncomfortable and inconvenient, but that's all. If you're lucky they won't find anything. 

Mine was TRUS, I had to lie on my side whilst the doc shoved every bit of hospital equipment he could find up my arse, meanwhile a nurse sat on the other side i.e. facing me making small talk, about what I had for breakfast, to try and distract me from what the doc was doing. Poor little me with my aspergers; I hate small talk, I just wanted to count how many small yellow tiles were on the wall behind her.

Keep us updated. 

Dave

User
Posted 08 Jan 2020 at 23:11

Wishing you all the best for tomorrow Ian.

 

Ange

User
Posted 08 Jan 2020 at 23:27

Thanks for the replies folks. The specialist nurse told me quite specifically that she carried out standard biopsy’s but because mine was in a difficult place , her words the surgeon , professor would be doing the procedure. Again I’ve been misled by a medical team. I’m attending the appointment but I need a lot to of answers before I’m letting them near me. At best they’ve still to reach a level of incompetence. 

User
Posted 08 Jan 2020 at 23:32

Originally Posted by: Online Community Member

Good luck Ian. It'll be a little uncomfortable and inconvenient, but that's all. If you're lucky they won't find anything. 

Mine was TRUS, I had to lie on my side whilst the doc shoved every bit of hospital equipment he could find up my arse, meanwhile a nurse sat on the other side i.e. facing me making small talk, about what I had for breakfast, to try and distract me from what the doc was doing. Poor little me with my aspergers; I hate small talk, I just wanted to count how many small yellow tiles were on the wall behind her.

Keep us updated. 

User
Posted 09 Jan 2020 at 00:52
So it's a TRUS biopsy you are having as template is more involved and is a theater procedure. Specialist nurses are now being trained to do more things which provides more scope and responsibility for them and saves time of a surgeon. (Why a Professor in your case I can't say). A TRUS biopsy feels like being flicked with a rubber band as each core is taken, usually between 8 and 12 times. Quite frankly I would rather have this than a tooth pulled or filled. Shortly after the TRUS I drove home, no problem.

Good decision to go ahead having had the MRI I think.

Let us know how you get on.

Barry
 
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