Me as well

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

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

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

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.

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   

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

Barry

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

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. 

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

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

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

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.

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

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

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

Further to the messages below, I am due to be contacted by a surgeon tomorrow (Tuesday). In the meantime, I have undertook some research and believe I have ascertained what the numbers on the letter mentioned below refer to. I think they refer to the Grade Group as detailed below

Gleason score 6 (or 3 + 3 = 6) Grade Group 1 The cells look similar to normal prostate cells. The cancer is likely to grow very slowly, if at all Gleason score 7 (or 3 + 4 = 7) Grade Group 2 Most cells still look similar to normal prostate cells. The cancer is likely to grow slowly Gleason score 7 (or 4 + 3 = 7) Grade Group 3 The cells look less like normal prostate cells. The cancer is likely to grow at a moderate rate Gleason score 8 (or 4 + 4 = 8) Grade Group 4 Some cells look abnormal. The cancer might grow quickly or at a moderate rate Gleason score 9 or 10 (or 4 + 5 = 9, 5 + 4 = 9 or 5 + 5 = 10) Grade Group 5 The cells look very abnormal. The cancer is likely to grow quickly

Edited by moderator 07 Dec 2022 at 10:56  | Reason: Not specified

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

Well, we will have to beg to differ.

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

Thanks, I think, for that!

Will report back tomorrow once I have spoken to the surgeon

Prof Z. That will be a Chateau Musar from Lebanon probably. There is a Lesson in Hope against Adversity. They have continued making wines in that area throughout all the ghastly conflicts.