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User
Posted 06 May 2021 at 15:04

Having found the conversations useful and informative, I thought I would detail my particular journey.

Following the revelation by several personalities in 2018 of being diagnosed with prostate cancer, I decided at age 60 to take a PSA test myself. Rather than burden the NHS, I opted for a private do it at home pin-prick test and subsequently received the news that my PSA reading was 6.26. I reported this to my doctor who had me in, felt my prostate ( it was slightly larger than normal) and tested my PSA level. It came out at 3.58. Roll on 3 years, because I had been suffering hot sweats for around 4 months (Oct -Jan), I arranged to have another at home pin-prick test. The result this time was 7.54 and, as before, I reported this to my doctor. On 10/03/21, as well as having an ECG , a number of blood samples were taken, resulting in a PSA reading of 5.32 (apart from the blood reading for my liver, which was slightly outside the "normal" range, all the other blood test readings were fine ). Further blood tests were taken on 12/04/21, resulting in a PSA reading of 5.76 (the liver test reading had returned to "normal"). Because of the elevated PSA reading, my doctor referred me to Addenbrookes for an MRI scan , which I had on 21/04/21. The results of this are:

M4 lesion, 15mm x 8mm in sector 3a/14asr.Prostate size: 55ml

I am now awaiting a date to attend hospital so that prostate biopsies can be undertaken.

 

 

User
Posted 08 Sep 2021 at 12:17

An Update

 

I have just received the results of  the PSA test I had on 06/09/21 and was told by the consultant who phoned me today that my PSA has slightly increased to 6.01 (It was 5.76 in April). He advised that because of the increase and because I am on Active Surveillance, he would book me in for a general anaesthetic transperineal prostate biopsy so that more (30) core samples could be taken. I had a local anaesthetic TP Biopsy in June,  when 13 core samples were taken (details are on my profile), and the surgeon now wants to make sure that nothing was missed.

 

No need to comment, unless you want to, the update is for information only

User
Posted 08 May 2021 at 13:07
I, to offer a contrasting experience, had a "full skeletal scan" MRI and not a nuclear scan. I was told by the PCUK nurses that this was the "gold standard" for detecting bone mets. I'm sure the reality is that all these tests are good, and that it depends on the equipment available at the site where you're being treated.

Cheers,

Chris

User
Posted 08 May 2021 at 16:27
I'm sure you will have a bone scan of some type during the diagnostic process. It is normal to do so, because although they're unusual, there are types of prostate cancer which don't raise PSA levels significantly.

Sounds as if you're in safe hands, anyway.

Best wishes,

Chris

User
Posted 04 Jun 2021 at 16:32

Well, I had my TP biopsy under local anaesthetic  earlier today at Addenbrookes and found the procedure to be much better than I expected. Did not really experience any pain, though being chatted to by a young attractive female doctor during the procedure might have helped as it kept my mind off what was going on. The consultant, who was excellent,  told me when a sample was going to be taken (saying  "small prick now": just as well I knew he was not talking about my manhood!), with the whole procedure taking about an hour. Obviously, some bleeding and some blood in my urine but apart from that nothing else. I should be told the results of my biopsy in around 2 weeks. Interestingly enough, I was told that if surgery was necessary, I could have the operation within 2 weeks. So no waiting list. 

 

The consultant also told me that 1 in 5 men over 40 have prostate cancer, that most men of my age (63) have it and all men over 80 have it.

User
Posted 10 Jun 2021 at 14:00

Well, in less than a week (my biopsy was on 04/06/21), I have today received a letter from Addenbrookes informing me of the following:

Procedure: Targeted Transperineal Prostate Biopsy under LA

(25ml Lidocaine 1% Ciprofloxacin 500 mg)

Prostate Volume: 55 ccm

Target in Right anterior: 3

Right mid 2,   Right posterior 2,  Left anterior 2, Left mid 2, Left posterior 2

The hospital said they would contact me again once the histopathology of the tissue has been discussed in the multidisciplinary team meeting, but, in the meantime, would anybody knowledgeable like to comment?  

 

 

User
Posted 10 Jun 2021 at 15:34

I was not aware that some hospitals were now doing the Transperineal Template Biopsy using deep sedation instead of GA but I found this out personally this week when I experienced this first hand https://community.prostatecanceruk.org/posts/t27361-Changes-to-Template-Biopsy

The medical people usually  don't want to give a final diagnosis until all the tests have been done and scans studied.  It can be a frustrating wait but can make sense as you get a more comprehensively considered opinion.  Back in 2007 I was told my staging was T2A and surgery was a most likely option.  However, this was before the MRI, following which my staging was upgraded to T3A.  I remember saying at the time I wish they had waited and given me my diagnosis after the MRI as on the preliminary assessment I was prepared to have surgery but  after this changed to T3A following the MRI, surgery was not recommended.  Nowadays the MRI usually precedes biopsy,  so that is another thing that has changed over time.

Lets see what treatment options you are offered.

 

Edited by member 10 Jun 2021 at 16:05  | Reason: to highlight link

Barry
User
Posted 14 Jun 2021 at 09:59

Thanks & with a bit of luck I will be contacted today.

 

According to my MRI scan, though that can change when biopsy samples are taken, my 1.5 cm lesion is contained  within the prostate and is in just one area (the right anterior). No other focal lesion was identified. So, if my reading of my biopsy results in the hospitals letter to my doctor are correct (and they may not be), then the only cancer present (3) is in the right anterior (the lesion) and it is low grade. If that is the case, then a decision has to be made as to whether to leave it alone for the time being or to take (some) action against it.

 

By the way, I understand that bone scans are fairly routine after a biopsy

 

Ivan

Edited by member 14 Jun 2021 at 10:00  | Reason: Not specified

User
Posted 14 Jun 2021 at 17:56

I agree Dave, it is very confusing and it would be so easy not to be. At least I get the letter that the hospital sends to my doctor, some on here don't even get that. When I phoned up Addenbrookes on Friday for clarification of what the numbers on the letter meant the lady on the phone did not know (understandable perhaps), but a nurse who was asked didn't know either. So the point you make is quite salient. I will certainly thoroughly question the surgeon/consultant  when he phones me tomorrow (Tuesday) to discus the findings.

 

Thinking through my message below, the findings suggest that the samples taken from all over my prostate are  mostly 3 plus 4 = 7 (Grade 2) or where the lesion is, 4 plus 3=7 (Grade 3). Now I am not sure that all of my prostate can have cancer cells and would have expected at least a little part of it to be normal i.e. 3 plus 3 = 6 or less.

 

Still, I should,hopefully, know the full state of play tomorrow.

 

Ivan

User
Posted 14 Jun 2021 at 18:16

Sorry you've got me wrong.

Lived and worked in Spain

Wished I'd moved there 2 years ago instead of West Wales

The Eu the free world!

 

User
Posted 14 Jun 2021 at 20:12
Ah yes, I forgot that some departments report grade groups rather than Gleason scores. You could be right.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Jun 2021 at 11:38

Well, I have just had my telephone call from the Surgeon/consultant and thought I ought to post what was said before I forget what was said.

First of all, Lyn was correct in that the letter I got detailing the numbers against various parts of my prostate that were sampled were indeed the core samples taken. When I asked why underneath those numbers was the statement " The study was performed and the findings are summarised above"  no comment was made. I pushed the point and suggested it would have been better if the statement had said and the core samples taken in each are as above, but, again, elicited no response.

All of the samples taken were graded 1 & 2 (see my earlier message re what that actually means) and it appears that Addenbrookes no longer use the Gleason score ( 3 plus 3 = 6 etc). So, based on the core samples, my prostate cancer is likely not to grow or only grow very slowly. The surgeon advised that  based on my cancer grading only 5% of men with my grading would over 15 years gain a survival benefit by taking action at this time i.e. 95 % of men would still be alive, and possibly have died of something else, if no action was taken. So, for me, a good result.

Whilst typing out this message, I was contacted by the specialist nurse assigned to my case, who introduced herself and discussed what the results meant for me. She will send me some paperwork today and then phone me again on Friday to discuss the matter further. The view of the surgeon and the specialist nurse is that active surveillance in the short term might be best.

 

Edited by member 16 Jun 2021 at 09:39  | Reason: Not specified

User
Posted 15 Jun 2021 at 11:51

Yes, right chuffed as one always thinks the worse.

 

My fingers are crossed for you and even if the results are not as good as mine there are many treatments available that can make a big difference. My hope is that immunotherapy will provide, in the years ahead, a breakthrough in treating all cancers  and eventually stop it dead in its tracks. If as much money was poured into cancer treatments as was invested in  dealing with Covid I am sure that the breakthrough would not be that far away.

 

Let us know how you get on

 

Ivan

User
Posted 15 Jun 2021 at 16:37

That is really good news. 

Ido4

User
Posted 17 Jun 2021 at 18:53

Thanks, Dave ,for your response.

 

You are correct the consultant's figures were lifted from the website you mentioned and I used it myself just to clarify the various scenarios. In my case it suggested I could, potentially, gain another 3 years of life by having surgery. But, with medical science advancing at the rate it is, the outcome could, in the near future, be even better by doing nothing.  To misquote from Dirty Harry, " Do you feel lucky, Punk? Well, do you?  

User
Posted 17 Jun 2021 at 22:11
A 15mm lesion doesn't mean that you have a tumour in your prostate that measures 1.5cm - it just means that the MRI picked up an area of concern from which samples needed to be taken - the 3 positive cores from 11 will presumably have been from the 5mm area.

People sometimes imagine that prostate cancer grows as a distinct tumour, like you would imagine a ganglion getting bigger and bigger, but it isn't like that.

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

User
Posted 18 Jun 2021 at 08:57

Thanks, Chris, for your comments.

Reading your profile suggests that you have been on a roller coaster and though your initial results were not quite as "good" as mine, I wonder whether with hindsight you might have done things differently?

User
Posted 18 Jun 2021 at 17:12

Oh Dear. On diagnosis I said I didn't want treatment but had surgery, on recurrence I said I wasn't having salvage RT but did, so I am consistent. 

On diagnosis my consultant said without treatment I would still be around in 10-15 years, but would I have coped with knowing the cancer was spreading through my body, probably not and there would have always been "what ifs"in the back of my mind.

It is often said that outcomes of treatments are similar. That means about 30 percent of primary treatments will not eradicate the cancer or put another way 70 percent of men will have a successful primary treatment. I know guys who had surgery over 15 years ago and are still here. Not all side effects are guaranteed.

I have replied in the past that I would 100 percent follow the same route. We have an amazing ability to adapt to our "new normal". My surgery side effects were all manageable or fixable. My side effects of Salvage RT are not common. My SRT side effects are manageable but not fixable, but I don't think it is fair to compare RT with SRT.

Good luck with whichever choice you make.

Thanks Chris

User
Posted 09 Sep 2021 at 10:15

Further Update

I  have just been advised by Addenbrookes that my biopsy (earlier message refers) has been booked in for next Thursday (16/09). They don't hang about at Addenbrookes, I am pleased to say.

User
Posted 09 Sep 2021 at 15:52

Wishing you the best of luck with the biopsy.

User
Posted 17 Sep 2021 at 15:18

Great to know you came thru ok and had a reasonable experience.

You can see why in the last year they were only doing TRUS biopsies, as the theatre time, no of staff, procedures etc are much smaller! Hopefully the TP one will be the norm....less risky (apart from the GA) and probably easier to get their targets with the patient being comatose!

Best wishes for the results.

I'm on week 3 of HT....known as the Village Eunuch!

 

User
Posted 17 Sep 2021 at 17:41
Yet another example of the next-to-useless TRUS biopsy!

There have been guys here who have had FIVE TRUS procedures before a definitive diagnosis via a transperineal biopsy! I know three guys personally, who had an inconclusive TRUS and had to have a proper one later.

I don’t suppose your test will give you the ‘all clear’, but I hope your results will give you some low figures.

Cheers, John.

Show Most Thanked Posts
User
Posted 06 May 2021 at 15:29
The first thing to say is that most men of your age have prostate cancer. You'd be in the minority if you didn't have it, so don't get too stressed about it. Most cases go untreated and don't require treatment. Men die with it, not from it.

Given your slightly elevated PSA, you're being sensible in having a biopsy, but the important thing to stress is that prostate cancer really is basically a matter of being a man and living long enough. It's essentially just part of the ageing process. If your diagnosis does come back positive it may very well be the case that "active surveillance" is recommended - basically keep an eye on it. If more drastic treatment is recommended, it's not too awful. I had prostate radiotherapy just over two years ago and now get on with a normal life.

Keep us informed about your progress!

Best wishes,

Chris

User
Posted 06 May 2021 at 15:42

Thanks Chris for your response.

 

Yes, it is clear from my research that most men of a certain age have prostate cancer of one sort or another and that most of them in the past had no idea they had it. Obviously, the screening process that is available today, which is a good thing  but can, obviously, make some people very worried when they get  a "bad" reading, has made many more people aware of their condition.  I have no doubt that all cancers will, at some stage in the future, be curable and lets all hope that that day is not too far away.

Edited by member 06 May 2021 at 16:43  | Reason: Not specified

User
Posted 06 May 2021 at 16:06

Hi,  I'd not heard of pin prick psa tests.  It looks like they come out quite a bit higher than a formal test.  I wonder where they're analysed and if it puts a shadow on all the at home tests, e.g. cholesterol.

Your prostate appears quite large.  I recall being told my lesion was 13mm in the apex and trying to compare it to a prostate of 37ml.    The prostate sectors are also new to me, although I found an article about them, I haven't found a simple map, yet.

Possibly, overall your psa isn't very high and your large prostate might be giving off more psa than a normal sized one and we don't know what the lesion is.   I was told mine was near the edge which set alarm bells ringing but no-one has said anything to you of such concern.   Those alarm bells made me ready to decide on treatment immediately.

If you're on private treatment you may be treated faster although there are at least 5 more years of tests ahead and you might check who will do these if your private insurance is work related and you're near retirement.

All the best, Peter

User
Posted 06 May 2021 at 16:42

Hi Peter

 

The pin prick tests are ones I bought from a medical company  online and, yes, it does appear that the home testing kits may well be over or, in some instances, under reporting the results. Once you have taken your test tube sample (not an easy process and I am sure that the blood cells are compromised and/or damaged when doing so) you send it off to be tested. The nurse who took my needle in the arm blood test suggested, without actually saying so, that the pin prick blood tests were not, because of the way they were taken, terribly reliable.

According to research, my prostate is either medium or large in size (the numbers for either overlap by quite a margin), so the lesion is perhaps not quite as large as it first appears.

I am retired (retired at age 54) and do not have private medical insurance, so will at the moment rely on the good old NHS. I may well go private if I think that is necessary.

Many thanks  for responding to my message

 

Edited by member 07 May 2021 at 09:32  | Reason: Not specified

User
Posted 07 May 2021 at 09:11

I am surprised that you went to a private lab for a PSA test when a simple request to your doctor should have furnished you with a blood test form, and with a result of over six a probable swift referral to a urology specialist.

Three years down the line...if you have got cancer you may console yourself with the fact that most prostate cancers are slow growing, but the earlier they are caught the better, of course.

When you have the biopsy, may I suggest you request / insist on a transperineal one, rather than the less accurate and more risky TRUS (rectal) biopsy which is being phased out in many parts of the country.

Now that you are suspected of having cancer, you will be on our new ‘Covid Health Service’ fast-track programme for diagnosis, with prescribed time limits for each stage. So no need to consider any private medicine at this point.

Best of luck!

Cheers, John.

Edited by member 07 May 2021 at 09:12  | Reason: Not specified

User
Posted 07 May 2021 at 09:30

Hi John & thanks for your message

It just seemed easier at the time to have the test kit sent to me and to then send if off for the result. The actual NHS result back in 2018 was 3.58 (the private test came out at 6.26) so it is very unlikely that at that time any further action would have been taken. Even 3 years on the NHS test result is "only" 5.32 & 5.76 (the private test result was 7.54), still  higher than one would like but not the high numbers that would cause much more cause for concern. But, yes, if I knew back in 2018 what I know now, I would have insisted on then having an MRI scan and would have gone private if that was not agreed to by the NHS.  The lesion may well have been smaller then and perhaps easier to "work on".

Thanks for your advice re the type of biopsy to go for. I will certainly mention this when I am next contacted by Addenbrookes .

 

Regards, Ivan

User
Posted 07 May 2021 at 20:20

Quite a few on here recommend the template biopsy. 

Not long ago the biopsy was done before the MRI.  Now they do the MRI first so the doctor knows where to put the needles.  You could say that makes the TRUS more accurate than they were.

That said, the template is, I'd feel sure, more accurate in that there are around 24 needles each positioned by a template.   Whereas the TRUS method uses 12 needles 6 on each side positioned by the doctor.

In my case only 1 needle found any cancer on 5% of that needle's sample.  So it was nearly a miss with a lesion of 13mm, Gleason 4+3, which seems a pretty big target to me.  I hadn't had an MRI though and actually 3 of the needles had no sample for some reason.   I wondered if that was because I clenched my muscles at one stage and was told to stop doing it.  It's not painful but like a dull discomfort.

TRUS uses local anaesthetic and Template usually General Anaesthetic.  At the end of the day they only need to find one sample on a suspected lesion.   If you imagine a walnut with 12 or 24 needles being stuck in although yours is quite a big walnut. 

I'd never had a General Anaesthetic and I seem to recall a reluctance to have one so I'm not sure I'd have gone for a template and if they'd said it would need a wait of a few weeks longer it would have been a factor against it.

I recall the doctor saying to me he'd rather take a few extra weeks to get a better diagnosis and I said, amicably, I'd rather he had enough information and got the whole process done as fast as he could.   Some patients share his view.  

The decision isn't quite so clear cut and can depend on your attitude to carrying a lesion and if you trust the TRUS.  All the best Peter

User
Posted 08 May 2021 at 02:20
The leading prostate cancer oncologist at the Royal Marsden Hospital stated at a seminar a couple of years ago: “the...trial has shown us that the TRUS biopsy is as bad as we thought it was...”

Some hospitals now do transperineal / template / target biopsies (more or less the same thing, I think) under local or epidural anaesthetic. I had 42 cores sampled.

There are some men here who have had three TRUS biopsies! And countless who have had one TRUS only to have to have a transperineal biopsy subsequently. Buy one get one free!

Cheers, John.

User
Posted 08 May 2021 at 09:32
I'm not an expert though I know a lot more now than when I was diagnosed in March. I'm kicking myself that I didn't take control much sooner, but i took the nhs advice without question.

If you are prepared to pay the PMSA PET scan is the gold standard now for detection. Results from mine downgraded my T score from T3 to T2 Its not going to make a great difference to anything except how I feel. But it was worth it.

User
Posted 08 May 2021 at 09:37

Thanks, Peter, for your message and for the useful information

 

My understanding, after speaking to the doctor on 30/04 who conveyed the results of the MRI scan I had on 21/04, is that Addenbrookes carry out transperineal/template biopsies under local anaesthetic. Once you have had the procedure, you wait 15 mins or so then go home. The doctor said it was not recommended that I cycle home.I can fully understand why!

Yes, the need to get things moving/resolved is strong, so I understand why you didn't want to delay matters when you knew that something was not right. The trouble is, is it better to go with your instincts ( one often knows that something is not right) or take account of the expertise of the doctor/surgeon. Both I suppose is the best answer.

I certainly have a few things to think about and to discuss when I am called in for my biopsy 

All the best, Ivan   

User
Posted 08 May 2021 at 09:44

Hi John & thanks for your message

 

I am with you on the issue that less is better, so will certainly discuss this point with Addenbrookes.

As you will see from my response to Peter, Addenbrookes do not appear to carry out the TRUS procedure. So, hopefully, one less thing to have to think about.

 

All the best, Ivan

User
Posted 08 May 2021 at 09:56

Thanks PogromXX for your message.

Addenbrookes, where I am being treated, does have a PMSA Pet scan but whether that was used on me I am not sure. I did have fluids pumped into my arm via an intravenous drip before and when I was in the scanner, so it is possible that I may have had the "gold plated" scan.

 

I will find out when I next speak to the hospital.

 

Regards, Ivan

 

User
Posted 08 May 2021 at 12:18

Originally Posted by: Online Community Member
I'm not an expert though I know a lot more now than when I was diagnosed in March. I'm kicking myself that I didn't take control much sooner, but i took the nhs advice without question.
If you are prepared to pay the PMSA PET scan is the gold standard now for detection. Results from mine downgraded my T score from T3 to T2 Its not going to make a great difference to anything except how I feel. But it was worth it.

The statement that the PSMA is the Gold Standard for detection needs qualification.  Between 5-10% of men do not express sufficient PSMA for the scan to work, as at least one of our members has found, in which case it may be necessary to have an MRI, bone scan or other scan.  In fact no scan is 100% reliable although for men who express sufficient PSMA, the 68 Gallium one is usually the best of its type available in the UK.

As regards knowing whether you have had the PSMA one,  as questioned later in this thread, you should certainly know if you had this as it is a nuclear scan prepared specifically for an individual according to the person's weight.  The person receiving this scan is given specific instructions and is radioactive  for several hours after it and is pre warned not to get close to others, particularly pregnant women, for some hours after it. 

 

 

 

 

 

 

 

 

p

Barry
User
Posted 08 May 2021 at 12:30

Barry

Further to your message, based on what you have said I did not have the PSMA scan

User
Posted 08 May 2021 at 13:07
I, to offer a contrasting experience, had a "full skeletal scan" MRI and not a nuclear scan. I was told by the PCUK nurses that this was the "gold standard" for detecting bone mets. I'm sure the reality is that all these tests are good, and that it depends on the equipment available at the site where you're being treated.

Cheers,

Chris

User
Posted 08 May 2021 at 15:04

Hi ohdear,

The fluid injected during an MRI is called contrast. I don't know exactly how it works, I think without contrast the solid matter shows up best and with contrast the blood shows up best, so by having both sets of images they get a much more detailed view of the prostate. (I know I have massively simplified the above explanation, and it is not entirely accurate but the principal of what I'm saying is correct).

With your relatively low psa I would not expect Pet and PSMA scans, possibly not even a bone scan unless the biopsy shows something worth looking at.

I am right behind you on taking private psa tests, I think the NHS is excellent, but trying to get GP appointments for a minor test is too time consuming and bureaucratic. If you can afford to organise the test yourself and then only get involved with the NHS if something shows up that is better for everyone. Of course if you do need treatment or further tests use the NHS you have been paying in all your life, and the treatment is pretty good. BTW though I talk about bureaucracy at GP surgeries I do have to say I am very pleased with my GP I do think I get good service. 

Dave

User
Posted 08 May 2021 at 15:10

Thanks, Chris, for adding to this conversation

Yes, I am sure that where you are treated and the equipment they have is a factor to take into account when deciding  whether the correct decisions are being made. Addenbrookes where I am being treated is, certainly according to their website, one of the best prostate cancer treatment centres in the UK, so I am, hopeful, that I will receive the best care.  

User
Posted 08 May 2021 at 15:33

Thanks Dave for adding to this conversation

You mentioning the contrast fluid has reminded me that is what I was told was being injected into my arm. At the time there are lots of things being said but little, in my case at least, being retained.

I am hopeful that my relatively low PSA score is a good sign, but because I take 15 mg of Lansoprazole on an almost daily basis for my acid reflux it is possible that this medicine has reduced my actual PSA score. I did mention to the hospital staff that I took it and a 2.5 mg pill of Lisinopril for blood pressure, but they made no comment when told whether this would affect my PSA reading. A Japanese medical report of several years ago suggested that many medicines affect PSA, with Lisinopril being one ( a reduction of around 20%).

 

I agree that it is often difficult to book up a doctor's appointment (around 4 weeks at my surgery) so having a private PSA test (it cost around £40) and then contacting the surgery if there were issues seemed a no-brainer. My doctor has been excellent once there appeared to be a "problem", as indeed has the hospital. Certainly no complaints from me on that score. Depending upon the results of my biopsy, and if the NHS will not fund it, I may go private if all the evidence suggests that Focal Therapy (at a possible cost of £13K) may be my best option.

 

All the best, Ivan

 

 

User
Posted 08 May 2021 at 16:27
I'm sure you will have a bone scan of some type during the diagnostic process. It is normal to do so, because although they're unusual, there are types of prostate cancer which don't raise PSA levels significantly.

Sounds as if you're in safe hands, anyway.

Best wishes,

Chris

User
Posted 09 May 2021 at 02:29

So, Ivan,

May I suggest, in the words of the late-lamented Michael Winner, that you ‘Calm down dear’?

A cancer diagnosis is devastating for anyone, but again, you may console yourself that PCa is about the least worst one you can get. If you had pancreatic, lung or liver cancer it’s unlikely we would be corresponding for too much longer.

Great news that the Cambridge hospital does not offer the TRUS biopsy, and frankly, you can’t do much until you get the results of your biopsy. Otherwise you are just thrashing around in the water, looking at treatments for a cancer you still might not have.

If you are diagnosed with PCa, and depending on the extent of it and its grading/staging, there are plenty of guys here to offer advice as to treatment regimes.

Please speak with a surgeon and an oncologist, and if you want, get second opinions from two more.

Everyone in your situation searches the web for ‘alternative’ treatments such as Nano-Knife, HIFU, etc. A tiny fraction of men try them, and most are at the trial stage. ‘Old Barry’ here knows more than most about HIFU, if you feel the need for it.

I am afraid there is more waiting to be done, first for your biopsy date, then some weeks for your possible ‘Dear John’ results consultation, and then another wait whilst considering treatment options. So just carry on and try to concentrate on more important matters than a potentially curable affliction.

Cheers, John.

Edited by member 09 May 2021 at 07:17  | Reason: Not specified

User
Posted 09 May 2021 at 08:31

Hi John

Yes, it was a bit of a shock getting the news that the scan showed a lesion on my prostate but, as you have said, it is not the worse cancer to get.The ones you mention are much worse and are a death sentence. I am actually quite chilled out and obviously won't know until the biopsy what the state of play is.

It is in my character to find out as much as possible about something "new", whether it be purchasing a new car or researching something I have been diagnosed with. The collective knowledge that exists on this forum is very useful, the reason why I joined.

Thanks for your viewpoints, which have been useful and thought provoking

 

Regards, Ivan

 

User
Posted 04 Jun 2021 at 16:32

Well, I had my TP biopsy under local anaesthetic  earlier today at Addenbrookes and found the procedure to be much better than I expected. Did not really experience any pain, though being chatted to by a young attractive female doctor during the procedure might have helped as it kept my mind off what was going on. The consultant, who was excellent,  told me when a sample was going to be taken (saying  "small prick now": just as well I knew he was not talking about my manhood!), with the whole procedure taking about an hour. Obviously, some bleeding and some blood in my urine but apart from that nothing else. I should be told the results of my biopsy in around 2 weeks. Interestingly enough, I was told that if surgery was necessary, I could have the operation within 2 weeks. So no waiting list. 

 

The consultant also told me that 1 in 5 men over 40 have prostate cancer, that most men of my age (63) have it and all men over 80 have it.

User
Posted 04 Jun 2021 at 23:47
Well that's interesting. Fingers crossed I will be having a Template Biopsy next week at UCLH. I was not offered anything other than the procedure being done under General Anaesthetic which means I must not drive within 24 hours of having it. The hospital is sending a car from London to collect me from my Devon home on the day and will take me back after the biopsy, so clearly considers GA most appropriate. (Last time I had a TP I drove and used public transport to the hospital and was accommodated in a ward overnight. However, due to Covid precautions and isolating, they would not do it on this occasion).

I was scheduled to have this Biopsy last month but due to a mix up between my local surgery and the hospital, a urine dip test was done instead of a culture test and the biopsy was cancelled almost at the 11th hour. The following is the gist of a message sent from the hospital to my surgery to ensure that a culture test is done as part of the pre OP tests this time.

"Patient above has been listed for prostate surgery and we require a MSU that has been cultured. Microscopy alone will not be sufficient. If possible please can you kindly carry this out? I have informed the patient also.

On the basis that we are carrying out a urological procedure that can seed the prostate with bacteria present in the urinary tract, it is our local policy to rule out the presence of asymptomatic bacteria in the urine as well, which becomes increasingly common in older men with urinary symptoms, and a history of prostate/urological procedures. This policy is agreed with our hospital microbiology Consultants specialising in Urology."

Another advantage of the Template Biopsy over the TRUS is that going through the Perineum rather than the rectum reduces the risk of infection. Ruling out an infection before either kind of biopsy is therefore sensible.

Barry
User
Posted 05 Jun 2021 at 09:17

Hello Barry

 

Thanks for your message

 

I think the biopsy you are having and the one I had are one of the same. I was told that the procedure is usually carried out under a local anaesthetic (as mine was), but that a general anaesthetic is used for patients who experience severe pain or who found the simple finger examination of the prostate very uncomfortable ( I did not). I was told I could drive home, but should not ride a bike or undertake any heavy lifting or stretching for a few days. My son is now waiting on me hand and foot, which is rather nice, But I better not milk it too much!

I took a urine sample to the hospital when I attended the biopsy and that was tested for any sign of infection (there were none). I also took a flow test just before the procedure to check out how well my bladder emptied. Having to go to the hospital with a full bladder when it was pouring of rain was probably the most uncomfortable part of my day.

I was told I could not leave the hospital until I had had a pee (they needed to make sure that there was no blockage) and when I did go there was initially a deal of blood. Subsequent peeing has resulted in only a little blood coloured urine and now ( a day later) none at all. I was somewhat concerned that my bowel movements could be affected but have found that that has not happened.So, overall, I am very pleased how well the procedure went and now only have to wait for the results.

 

Good luck with your hospital visit and have a good drive up to London from Cornwall.

 

Ivan

 

 

User
Posted 05 Jun 2021 at 10:18
Ivan, are you sure you had a template biopsy? It sounds more like a TRUS or image guided rectal biopsy to me? Are your puncture wounds on the outside between your anus and scrotum?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Jun 2021 at 10:35

Morning Lyn

 

No, I am not entirely sure, but was told it was a transperineal biopsy. I did have a MRI scan 6 weeks earlier and was told that that would be used to help guide the procedure.  I am not sure where my puncture wounds are but know that I did not have a TRUS procedure. Addenbrookes do not offer that.

User
Posted 06 Jun 2021 at 01:55

What the Prostate nurses say about the 'Gold Standard' scan does not accord with what I have heard.  I remember an Australian Professor saying the 68 Gallium scan is better than the nuclear bone scan and should replace it as is also better for imaging than standard CT scan and full body MRI*  Australia is more advanced with the 68 Ga scans.  Here is an easily read link https://www.prostate.org.au/news-media/news/benefits-of-psma-pet-scans-for-prostate-cancer-diagnosis/

Found it!   This is a very long but interesting talk about scans, particularly the 68 Gallium PSMA one, where it is used and the difference it can make to treatment etc.  https://www.youtube.com/watch?v=0H-g047os6c

Since this video, Australia has opened many facilities providing the aforementioned PSMA scan.

Edited by member 06 Jun 2021 at 05:25  | Reason: Not specified

Barry
User
Posted 06 Jun 2021 at 18:02

Thank you Barry for the message and the links. I found both links well worth reading

User
Posted 10 Jun 2021 at 14:00

Well, in less than a week (my biopsy was on 04/06/21), I have today received a letter from Addenbrookes informing me of the following:

Procedure: Targeted Transperineal Prostate Biopsy under LA

(25ml Lidocaine 1% Ciprofloxacin 500 mg)

Prostate Volume: 55 ccm

Target in Right anterior: 3

Right mid 2,   Right posterior 2,  Left anterior 2, Left mid 2, Left posterior 2

The hospital said they would contact me again once the histopathology of the tissue has been discussed in the multidisciplinary team meeting, but, in the meantime, would anybody knowledgeable like to comment?  

 

 

User
Posted 10 Jun 2021 at 15:34

I was not aware that some hospitals were now doing the Transperineal Template Biopsy using deep sedation instead of GA but I found this out personally this week when I experienced this first hand https://community.prostatecanceruk.org/posts/t27361-Changes-to-Template-Biopsy

The medical people usually  don't want to give a final diagnosis until all the tests have been done and scans studied.  It can be a frustrating wait but can make sense as you get a more comprehensively considered opinion.  Back in 2007 I was told my staging was T2A and surgery was a most likely option.  However, this was before the MRI, following which my staging was upgraded to T3A.  I remember saying at the time I wish they had waited and given me my diagnosis after the MRI as on the preliminary assessment I was prepared to have surgery but  after this changed to T3A following the MRI, surgery was not recommended.  Nowadays the MRI usually precedes biopsy,  so that is another thing that has changed over time.

Lets see what treatment options you are offered.

 

Edited by member 10 Jun 2021 at 16:05  | Reason: to highlight link

Barry
User
Posted 10 Jun 2021 at 21:07
Ohdear, this letter doesn't give you any information about what was found - it seems to just be confirming how many samples they took from each area of your prostate. Looks pretty routine in terms of the number of cores taken.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Jun 2021 at 08:23

Thanks, Lyn, for your response.

 

I must admit I thought the numbers might be the Gleason score for each area and thought that because under those numbers is the comment:

"The study was performed and the findings are summarised above"

 

Ivan

Edited by member 11 Jun 2021 at 11:26  | Reason: Not specified

User
Posted 11 Jun 2021 at 15:23
It is possible but the findings are rarely described as a single number so you would have been more likely to get something like "Right anterior = 6 (3+3)"

If it turns out that these are Gleason grades, it is saying that there is no cancer in the right or left mid, right or left anterior or left posterior, and the cancer found in the right posterior is of the lowest grade. But my instinct is that it is just saying how many samples they took.

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

User
Posted 11 Jun 2021 at 16:01

I will be able to clarify the state of play when I am contacted (after the team have met and discussed the findings), but if the numbers are not a Gleason score then I shall question their use of English on the letter i.e. why use the word "findings" are summarised above when they mean the number of samples taken from each is.

 

I have contacted the hospital for clarification and am awaiting their phone back- which may be Monday.

Obviously, my fingers are crossed that the numbers are Gleason scores for each area (perhaps the highest grade only for each area is recorded).

 

Ivan

User
Posted 14 Jun 2021 at 09:41

Hi Ivan 

I hope you get your results soon.

It is a worrying time.

All I know is the the radiologist said the cancer was at the apex and likely T3b

They must be concerned as a noticed I was listed as a priority case and a nuclear bone scan is scheduled for 3 weeks time.

 

 

 

User
Posted 14 Jun 2021 at 09:59

Thanks & with a bit of luck I will be contacted today.

 

According to my MRI scan, though that can change when biopsy samples are taken, my 1.5 cm lesion is contained  within the prostate and is in just one area (the right anterior). No other focal lesion was identified. So, if my reading of my biopsy results in the hospitals letter to my doctor are correct (and they may not be), then the only cancer present (3) is in the right anterior (the lesion) and it is low grade. If that is the case, then a decision has to be made as to whether to leave it alone for the time being or to take (some) action against it.

 

By the way, I understand that bone scans are fairly routine after a biopsy

 

Ivan

Edited by member 14 Jun 2021 at 10:00  | Reason: Not specified

User
User
Posted 14 Jun 2021 at 16:27

I do get annoyed with doctors for not using units when giving results such as PSA 28.2, but it is meaningless without units. The Gleeson system is not very clear and I can see some need to simplify it. The problem is not only that you are not sure what the numbers are, but is everyone in the MDT sure what they are? and would a member who wasn't sure be brave enough to show their ignorance in the presence of all those other senior professionals, or just stay quiet and agree with everyone else. In a much earlier thread I mentioned how PSAs in Manchester were reported as Free PSA rather than Total PSA for a few years before someone called them out.

See if you can get someone to confirm what the figures mean, and then ask them how they know that's what they mean?

Dave

User
Posted 14 Jun 2021 at 17:56

I agree Dave, it is very confusing and it would be so easy not to be. At least I get the letter that the hospital sends to my doctor, some on here don't even get that. When I phoned up Addenbrookes on Friday for clarification of what the numbers on the letter meant the lady on the phone did not know (understandable perhaps), but a nurse who was asked didn't know either. So the point you make is quite salient. I will certainly thoroughly question the surgeon/consultant  when he phones me tomorrow (Tuesday) to discus the findings.

 

Thinking through my message below, the findings suggest that the samples taken from all over my prostate are  mostly 3 plus 4 = 7 (Grade 2) or where the lesion is, 4 plus 3=7 (Grade 3). Now I am not sure that all of my prostate can have cancer cells and would have expected at least a little part of it to be normal i.e. 3 plus 3 = 6 or less.

 

Still, I should,hopefully, know the full state of play tomorrow.

 

Ivan

User
Posted 14 Jun 2021 at 18:08

I agree.

If I hadn't asked at my biopsy, I wouldn't have known I was PIRADS 5.

If I hadn't asked for my records...I wouldn't have known that the mri said T3b...

It's all treatable... hopefully.

But I wish they would level with us...

Meanwhile drinking a super Lebanese wine at £26.... fantastic

Let's hope I've more years of this...

 

 

 

User
Posted 14 Jun 2021 at 18:13

The fact that you are aware of the cancer and are taking action I am sure you have many years left. Thirty or more years ago most men were not tested and had no idea that they had prostate cancer and probably died of it (it having gone elsewhere in the body) earlier than they should have.

 

You obviously have fairly expensive tastes in wine. Glad to see you are buying non-European wine. I haven't bought European wine since 2016

User
Posted 14 Jun 2021 at 18:16

Sorry you've got me wrong.

Lived and worked in Spain

Wished I'd moved there 2 years ago instead of West Wales

The Eu the free world!

 

User
Posted 14 Jun 2021 at 18:22

Well, we will have to beg to differ.

 

Europe is fine it is the EU, to my mind, that is the problem

User
Posted 14 Jun 2021 at 19:36

Originally Posted by: Online Community Member

Now I am not sure that all of my prostate can have cancer cells and would have expected at least a little part of it to be normal i.e. 3 plus 3 = 6 or less.

Well mine was >90% cancer in all cores, so yes they could all have cancer.

 

Dave

User
Posted 14 Jun 2021 at 19:55

Thanks, I think, for that!

 

Will report back tomorrow once I have spoken to the surgeon

User
Posted 14 Jun 2021 at 20:12
Ah yes, I forgot that some departments report grade groups rather than Gleason scores. You could be right.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Jun 2021 at 11:38

Well, I have just had my telephone call from the Surgeon/consultant and thought I ought to post what was said before I forget what was said.

First of all, Lyn was correct in that the letter I got detailing the numbers against various parts of my prostate that were sampled were indeed the core samples taken. When I asked why underneath those numbers was the statement " The study was performed and the findings are summarised above"  no comment was made. I pushed the point and suggested it would have been better if the statement had said and the core samples taken in each are as above, but, again, elicited no response.

All of the samples taken were graded 1 & 2 (see my earlier message re what that actually means) and it appears that Addenbrookes no longer use the Gleason score ( 3 plus 3 = 6 etc). So, based on the core samples, my prostate cancer is likely not to grow or only grow very slowly. The surgeon advised that  based on my cancer grading only 5% of men with my grading would over 15 years gain a survival benefit by taking action at this time i.e. 95 % of men would still be alive, and possibly have died of something else, if no action was taken. So, for me, a good result.

Whilst typing out this message, I was contacted by the specialist nurse assigned to my case, who introduced herself and discussed what the results meant for me. She will send me some paperwork today and then phone me again on Friday to discuss the matter further. The view of the surgeon and the specialist nurse is that active surveillance in the short term might be best.

 

Edited by member 16 Jun 2021 at 09:39  | Reason: Not specified

User
Posted 15 Jun 2021 at 11:42

That's very good news....i await my call... although with a likely T3b, I doubt the diagnosis will be the same...

User
Posted 15 Jun 2021 at 11:51

Yes, right chuffed as one always thinks the worse.

 

My fingers are crossed for you and even if the results are not as good as mine there are many treatments available that can make a big difference. My hope is that immunotherapy will provide, in the years ahead, a breakthrough in treating all cancers  and eventually stop it dead in its tracks. If as much money was poured into cancer treatments as was invested in  dealing with Covid I am sure that the breakthrough would not be that far away.

 

Let us know how you get on

 

Ivan

 
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