Me as well

User

Posted 09 May 2021 at 03:29

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 08:17 | Reason: Not specified

User

Posted 09 May 2021 at 09:31

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 17:32

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 05 Jun 2021 at 00:47

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 10:17

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 11:18

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 11:35

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 02:55

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 06:25 | Reason: Not specified

Barry

User

Posted 06 Jun 2021 at 19:02

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

User

Posted 10 Jun 2021 at 15:00

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 16:34

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 17:05 | Reason: to highlight link

Barry

User

Posted 10 Jun 2021 at 22:07

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 09:23

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 12:26 | Reason: Not specified

User

Posted 11 Jun 2021 at 16:23

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 17:01

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 10:59

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 11:00 | Reason: Not specified

User

Posted 14 Jun 2021 at 17:11

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 11:56 | Reason: Not specified

User

Posted 14 Jun 2021 at 17:27

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 18:56

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 19:13

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

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